Relapse Schmelapse.

My lack of updating in this blog just goes to demonstrate just how skewed a picture of a treatment can be when taking user reported experience - with people much more likely to be vocal on a subject when it is not working. I get surprised when the MS nurse says to me that they would not expect me to have relapses on tysabri, because after all, it is not a cure. However she did say that of the 30 people currently on the treatment at Addenbrookes hospital, none have ever had a relapse on the treatment - until this year when two people did who had been on it since it came out. This is a very different picture of the drug than the one that you build from googling and reading diaries and trawling forums, because if it is going well, who wants to keep going back to say 'it's going well still thanks'. Not many - most want to forget about MS and get on with their lives save for the four-weekly trip to be infused. 

That is not to say that this update is because tysabri is no longer working for me - it is. But I might have had a small relapse last month. I went to my last infusion (number 7, number 8 is tomorrow) and reported having experienced a re-occurrence of certain symptoms, namely those of bladder and bowel disturbance along with a new experience of blurred vision in my left eye. The MS nurse said she would hedge her bets it was a urine infection, but that if I tested negative for that it could well be a small amount of new MS activity. It was an odd feeling to be sitting in a room with other people on drips and have a nurse report that 'everything was okay with the sample' with a distinct tone of disappointment and sympathy, instead of the usual cheery tone that would accompany the delivery of such news. I didn't see the MS nurse again after the negative urine sample but she said she would 'note it in my notes' and I guess that is all there is to it really. It isn't bad enough to want or need steroids, and I definitely don't want them to take me off tysabri, so when new symptoms appeared this month I thought it best to keep quiet about it. After all, if this is a relapse, it is much milder than any pre tysabri relapses, but I don't know if the NHS are willing to keep someone on a drug that costs them 30k a year if it isn't 100%  doing 'what it says on the tin'. Nothing anyone has said has given me that impression, at least not in relation to MS and tysabri, it's just my own personal concern based on other decisions NICE and the NHS and PCTs take when it comes to things being 'financially viable'. 

So do I report to the MS nurse tomorrow about the numb tongue I had for half of this month? Or the three numb toes on each foot (although to be fair to MS I think that was from my stupidly brazen attempt at wearing heels for a night out.)

I still like tysabri even if this is a relapse, I don't really care in regards to the tysabri. It makes me hate MS all the more for not ever thoroughly pissing off, but that I knew that anyway.

Imagine.

Imagine these three steps as a whole stair case, tilting threateningly toward you.
Imagine a crowd of people jostling in front and behind.
Imagine that to those people, the stairs appear normal, and as far as they are aware so are you.
Imagine how you feel standing there, looking up at the top. Knowing you have no choice but to make what feels impossible, possible.
Imagine how you feel as you hold up those behind you.
Imagine someone comes down the other way, and you have to let go of the rail you are desperately clinging on to for them to pass.
Imagine you finally haul yourself up. You can't celebrate your achievement, you can not rest.
Imagine that is just one of many obstacles you face when you leave the house.

Next time you judge a seemingly healthy person for taking the lift one floor, walking frustratingly slowly, or parking in a disabled bay, try and just imagine what might be going on for them.

UTI's DLA and other Acronyms.

Continuing the theme of it being a pretty shitty four weeks, the day I finished the anti biotics for the infection I had after getting bitten by a bug, I got a nasty UTI, cystitis to be specific. And it was well beyond the cranberry juice stage.
I was bumbling to and from the toilet with no problems beyond the burning dribble of pee every couple of minutes. Like my experience with heat, I had read about infections making MS worse. It didn't appear to be happening, and I even started doubting I had MS at all. After about an hour or so, as if to prove a point, my leg just suddenly went.
I spoke to the local practise nurse at the GPs surgery, and she said that because I had back pain I had to have more anti biotics, luckily just a three day course.
So it was a pretty sedate weekend, mostly spent sleeping, peeing, drinking gallons of water, and generally feeling sorry for myself.

To top that off, I got my DLA renewal pack in the post today, obviously totally expected, as I knew it was coming up to that time. When I first claimed it, a charity (I think they are a charity anyway, maybe an organisation, I don't know to be honest) called Disability Cambridge helped me fill in the forms. The guy said to just ring him when it came up to renewal and he'd help me again. So I rang them as soon as I got the dreaded forms in the post, only to discover their funding has been cut, and they are no longer taking new cases. However when I gave him my address, he did say the guy I saw last time was still trying to help people in the City if he could, but it was up to him so I have to wait to hear.
It just makes me so fucking angry, another Tory thrust knife in the back of the disabled. I am sure this service in itself can not cost much at all. However by cutting services like this, there will be more people that will now not be able to claim for things to which they are entitled because there is no one there to advocate for them, tell them what help they can get, and generally help navigate some of the many minefields that having a disability can bring. And I am sure that is exactly what The Big C's want. Take away much needed help, so that the disabled have less of a voice and are pushed back underground.
So much for the big society. You can be a part of it, just so long as you can do everything for yourself.

**and breathe**

Back to the main reason for this post, which was that after the infections I spoke briefly to the MS nurse, who said that it will still be fine to have the tysabri infusion next week and that they only tend to delay the infusion if someone is showing signs of the beginnings of an infection, so getting over one is absolutely fine.

Infusions 4 & 5...."It's That Time Of The Month Again Dear"

Oh dear, it really has been a long time hasn't it. How am I ever going to become a world famous blogger with this level of posting?! (I jest, I jest. But still, sorry for not updating this a bit more regularly.)

So I believe I last posted after my third infusion. Things have been going really rather well since then, on the up and down scale of things.

The fourth infusion was very uneventful, apart from the usual tellings off about my blood pressure being too high, a fact I was quite disappointed with considering I had stopped smoking (since 8th June, thank you very much) and come off the birth control pill. I didn't see the MS nurse again at that one, and was the only patient in the room, so it really was a very quiet and mundane affair. Although I was kept alert by a very sharp pain in my arm where the cannula was. I couldn't move the arm at all even to turn a page on my magazine. As the boyfriend had dropped me off and gone off to do some chores, it did make it a bit of a boring and awkward one armed two hours.
The nurse couldn't explain why the pain was as it was, it was far beyond usual cannula pain - which once in is pretty much nil. The only thing done differently was some bloods were taken out of it first. She suggested that perhaps it was because they had only ever used that vein and to remind them to use the other arm next time.

I still had to wait the hour after, because apparently they have had a patient who had an allergic reaction during the sixth infusion. I should imagine the causes of this are still being looked in to, but while they are, it's still a two hour job for now.

The next four weeks went pretty well, although I did get a very noticeable slump when due for the next infusion. It kind of takes me a week or so to get back up to form after the infusion, and a week before it things are really rather rubbish, so I have two weeks in the middle where things are good. That is, if I am lucky enough not to have other factors come in to play, such as a period, hot weather, or an infection from a ridiculous bug bite - as has been the case this month. I sort of feel like I have been cheated out of my 'good spell' this month. It does make me feel pretty angry at times, but then I just figure there is no point in getting angry, because what is that going to achieve. A worsening of symptoms if I'm not careful, that's what!
I've always said one of the hardest things for me about this illness is the unpredictable nature of it. Well at least now it is predictable. I would rather have one fairly shit time every four weeks, that I can schedule in to the calendar and plan things around, than have a really shit time roughly every four months that takes weeks and weeks to recover from, with the possibility of not even recovering fully.
So this is definitely better.
It is also all about perspective. I think that how I feel the week before the infusion, is only ever as bad as a mild relapse. It tends to manifest in terms of reduced stamina for walking and standing, fatigue, vertigo and vision issues when I am tired (which obviously, when suffering from fatigue, is a bit more often than just at the end of the evening).
Between the fourth and fifth infusions, I definitely had some of the best days I've had since all this started. I was even able to manage on as little as seven hours sleep some days! This, for me, is nothing short of unheard of lately. I had got it down to an average of between ten and twelve a night, to be able to get through the next day without a nap. I also started going swimming, which is a really big deal for me. I felt so much better in the water, I could swim further than I could walk! I can't compare my ability to swim to how it was pre tysabri though because I haven't swum in years due to reasons other than MS (mainly the usual girly self confidence ones).

The fifth infusion in itself was much of the same. It was the first time I'd had one in the 'usual' place, because they were being done in what is meant to be the discharge lounge, because the lift had broken up to the outpatients neuro ward. It broke like over a year ago, but they didn't have the monies to fix it until the new financial year started in April, then they were fighting over where the infusions would go because the outpatients ward is too far from the main hospital if someone has a reaction, but the inpatient ward didn't have room. But this time the argument had been settled, and they have landed back in to where they always were, in the outpatient ward. This meant it was a lot more cramped. Instead of one big room, on the ground floor, sitting on my own, opposite an open door looking out at a tree.....it was in a room about a fifth of the size, with the three infusion chairs directly next to each other, looking towards a blue hospital curtain that divides off that bit of the corridor, behind which is the toilet. Details details, the drug still goes in the vein either way.

The MS nurse was there this time, so it was good to talk to her as I hadn't seen her for a few months. She reassured me that my new found love of swimming was a good thing. I had been slightly worried about the risk of infection, namely of the JC Virus. She said it is so unusual to get infected with it as an adult, it is usually something you either have or you don't by the time you are grown up (ha, I'm grown up!), apparently it's a 1 or 2 % chance of getting it. She said that there is a slightly increased risk of colds and things, but not a massive increase. I've only had one cold since I've had MS I think, and that was when I worked in an office where people think they are being gallant by coming in to work and sneezing their germs on to your keyboard.

My blood pressure was also down to ridiculously healthy levels, for the first time in years! So that made me happy. However at the end of the infusion, it had shot up to 167/90 or something along those lines, apparently it isn't an uncommon reaction for peoples BP to rise during it. I don't think it is simply 'whitecoatitis' though, because it really was a lot higher than when I arrived at the hospital when you'd think I'd have been more stressed if I was going to be stressed, and it was after I had been resting reading my book in a comfy chair for an hour.

I had a few days of the lovely boost feeling after. It is really quite strange, I suddenly feel like the days are so much longer. I think 'isn't it time for bed yet' not because I am tired, but because my mind simply isn't used to dealing with so much without a break for sleep! However, as I alluded to earlier, outside factors have come in to play and buggered me side ways a little.

**shut your eyes boys** 
 My periods are all over the place, since I stopped the pill. They are also a lot more heavy and painful - the reason I was on it in the first place, that and my crazy moods when I'm pre menstrual.
So this last week I have felt like my period is starting any minute, and it hasn't, which is really rather irritating, because it is taking up valuable time when I should be feeling good.
  **okay you can open them again now**

We also had summer last week, I shouldn't complain because I know it was only for six days or something, which even by British summers is pretty darn short, but it was hot. I coped with it remarkably well for the first two days, but then whilst coping with it, I got bitten by a bug when lazying by the river and that promptly put at end to the feeling good.

I've had the hollow feeling in my entire legs that is usually present in only my thighs when I have bad PMT, or all over when I am having a relapse. I've also been very tired, we're talking fifteen hours on Monday night. I am hoping it is just a mixture of PMT, this weird bite (for which I am just finishing anti biotics), and the warmer weather.
Oh that reminds me, I have to share this, because these things should be shared, please enjoy this brief interlude.................
****insert flashback music****
So, a few weeks ago, before this really hot weather, whilst we were still in Regular Rainy British Summer I had thought I was immune to the heat making MS worse phenomenon. I was having one of my 'I FEEL GREAT I CAN DO ANYTHING' days. I was with my friend in the jacuzzi (the best kind of exercise) and we got kicked out so they could, I dunno, add more chemicals to it or something. We decided to go in to the steam room. I had tried it once, for about ten seconds and vowed it wasn't for me. I never liked those things anyway, and I'd obviously read about heat and MS. However, being the superwoman that I clearly was, I was going to be fine to steam myself silly. And I was, for a few minutes. Then I sort of lost the ability to make coherent sentences come out my mouth. Not to worry I thought, I'll just get out of this steamy environment and cool down in the shower. This is what I did, where I promptly pooed myself a little bit. 
Moral of the tale? If you think you are superwoman, you probably aren't. And don't go in the shower at the gym after me.
****insert back to present day music****

The next infusion is going to be three days late, so I'll have a few more days of feeling pants to wait if I get the pre infusion lull like the last two times. This is because I usually have it on a Tuesday, but because this is the six month one I have to see the neurologist too, and they only do that on a Friday. I can't have it the Friday before the Tuesday because it would be too soon apparently. So it should be due two weeks yesterday, but I'll be having it two weeks Friday instead.
After that one, I am going to tune my body so that all shitness happens at once, so that I get my two weeks feeling good. Oh yes I am.

You should have seen the look on the boyfriends face when he realised there were now two 'times of the month'.

Infusion Number 3

I've been quite quiet here lately, mostly because my MS has been fairly quiet and so that makes me want to just try and get on with a normal life and not focus on my MS persona.
I want to not do that though, I am consciously in a place where I can have a life and MS at the same time, and not ignore one in favour of the other, however subconsciously I do seem to try and avoid MS related things when my own MS is behaving.

The other reason it's taken me a week to get round to writing about the third infusion, is because it was very uneventful. The MS nurse wasn't there so there isn't even any interesting MS related conversations to report on.
I felt good again after the infusion, and this last week since having it has been really, really good. I've been less fatigued, walking further, and just generally less bothered by day to day MS symptoms.
This is the sort of feeling I've had for perhaps a day or two in the past, and then it's been BAM another relapse hits. However this time, it seems to be lasting. It's only been a week, but it's still lasting, and for now I will take that. Just fingers crossed it keeps on lasting and the Tysabri does its job at keeping the relapse that I am now 'due' for at bay.
I do feel a bit nervous, all the happiness I feel at this improvement is tentative because I don't trust it yet. I had the odd day like this before and like I said, it was always preceding a relapse. MS has taught me the lesson to not expect, anything.
I no longer get excited between relapses thinking 'this could last for months, or even years' because every time I've thought that before, MS has come along and given me a cold hard slap in the face to remind me who is boss.
So I am cautiously hopeful, that this time, Tysabri is boss. That this good spell will last.
Don't get me wrong, it's not feeling like any miracle cure just yet, I still have the standard day to day symptoms, my life has changed beyond recognition from its pre MS form, however it is a life that I am happy in, and if Tysabri can manage to maintain it then to me, that is a welcome miracle.

Dermatologist

I just realised I hadn't posted about much practical stuff lately, and part of what I missed out was my visit to the Dermatologist.
In the bumph I was given by the hospital before I began Tysabri, it said you would be automatically referred. The neuro then said this was no longer the case, but because I had a couple of moles on my back which had been slightly changing anyway, he'd refer me just to be on the safe side.
I had the appointment with the Dermatologist last week, and it was fine. Apart from the fact he was a moody bugger, which seems to be a common thing amongst Dermatologists from what I hear!
He asked if I'd had much exposure to the sun over the years, I joked 'No, that's probably why I have MS' He asked me to repeat myself, which I did (but the moment was lost by then) and he just looked and me, said 'hm', and scribbled down some notes - they probably said 'the patient has a bad sense of humour'
Any how, he didn't seem concerned about them at all, and said the one they did have a photo of from six years ago hadn't changed at all.
The took new photos so they have them to compare it to if anything changes, and that was that.
I was glad to have gone because it is reassuring to know they have these photos should they start changing, and I can now have a clean slate so to speak, with the Tysabri.
If anyone is starting Tysabri and has any moles you're worried about, I'd definitely recommend getting them checked out. According to the Dermatologist the link between a higher risk of skin cancer and Tysabri is unproven, it could easily be a statistical coincidence, but whilst it is still unknown it is better to be safe than sorry in my opinion.

Wasted Energy

Today, I needed to be up for 9.30. This might not seem like a big deal for a lot of people (although here I am sure many will understand) but for me this is huge. 
I'm only just coming out of my fatigued haze that was here a couple weeks ago, and although it's a lot better it is by no means absent. 
The planning for such an 'early' morning doesn't just start that day. Sunday I tried to go to bed early so that I didn't sleep too late Monday, so I could get to sleep earlier Monday to be up for 9.30 Tuesday. 
I woke up and felt like crap, I'd only had 7hours sleep *shock horror*. A big clue to me that I need more sleep when the alarm goes off is how long the double vision stays around for. Most mornings it is there when I first open my eyes but goes away very quickly (a few seconds) but if it stays around for more than that, I know my day is pretty much doomed. In a lot of situations, that can be quite useful, as it is a really good indicator of how the day will pan out. However it isn't so good when I have to just ignore it and get out of bed anyway. 
That is what I did this morning, got up, dragged my electric bike out the hall, and cycled to the doctors.

As I was cycling to the doctors, certain facts started to dawn on me. I always have appointments set in my phone with a 24hours reminder.....why didn't I get woken up to that yesterday morning? I then started to try and work out what date it was, (being unemployed, these facts often escape me) I remembered someone saying yesterday it was the 7th. That meant today was the 8th and I would've remembered having an appointment made on that day as it's a date that always stands out to me as it was my great grandma's birthday. Then it dawned on me...just as I arrived at the doctors, the appointment is on the 9th. The 9th is tomorrow. I checked my phone, and lo and behold there is the 24hour reminder flashing up.
On getting home, I was so tired, I decided to have a nap for another hour, but ended up ignoring the alarm (only half consciously) and sleeping until 3pm. Now I am very annoyed that I've ended up getting up even later than usual, this could be a problem when it comes to getting to sleep early tonight. And I still feel like crap. If I get out of bed when the double vision is like that, no matter what I do, I feel crap for the whole day.I'm not just tired, the headache is back, and my arms ache and don't work properly. 

Pre MS, this is something that would've been annoying at the time, but I would've quickly got over it and gone about my day. With MS, anything that wastes energy is super annoying, because the ramifications of doing some things is huge, so to do something that has given me a big fall out, only to realise it wasn't necessary, is beyond annoying it is down right exasperating.

Now, to do it all again tomorrow.
 

The Beast Vs The MonSter.

One of the hardest thing about MS is the lack of control. The unknown. As I've mentioned here before, I've a history of mental health problems. BPD to be precise. In the past, the BPD part of me, has always really struggled with uncertainties in life. Now, here this Beast has been thrust upon me, who can come and visit any time and wreck everything.
Every single plan I make, is made in the knowledge that MS has the capability, at any time to come along and quash it.

Everything from saying 'I'll Cook Tonight Honey' to 'Let's Go On Holiday Next Summer'.

There is the day to day fluctuations, one day I might wake and symptoms will feel relatively mild. I might be able to go out in the day AND the evening if I'm lucky. Another day, I might wake up and struggle to make it from bed to sofa.
You can just about get used to the day to day fluctuations by pacing yourself (a technique I practised in the Mindfulness sessions). I never over plan, I always under plan - then if it's a good day I'll see if I can make last minute plans.
Then there is the wider uncertainty of relapses. Looming on the horizon, like an axe swinging above my head ready to drop and cause damage any time. I am hoping this feeling will recede somewhat if I manage to go longer without a relapse on the Tysabri. But for now, it is there, like an ominous grey cloud on a hot summers day.

People with progressive MS often say they don't envy the unpredictability of relapse remitting MS. I can see what they mean. Although I personally do not envy those with progressive MS in the slightest.

I have my access course starting in September. I AM excited about it. But MS looms, threatening to destroy it. It's no different to having mental illness looming really. It's just that with mental illness gives more of an illusion of control, because you always hold this belief that somehow you have a choice in it, even though you damn well don't. But because it is 'of the mind' you seem to think the mind can somehow keep the control and sway the power in the direction it really wants. However experience has taught me over the years, that mental illness has access to the same licence as MS when it comes to being able to come along whenever it wants and disrupt life.

Don't get me wrong, I am happy 'n all. In fact, I am fucking surprised and how well I have coped with this MS lark. For the reasons above, the uncertainties, which before I have never quite coped with in life.
I think it was a mixture of being mentally strong enough at the point the diagnosis came along, and it being a real do or die situation. Everyone expected me to go totally off the rails, I expected I would if I'm honest. And I didn't.
Now that does point to a certain element of self control in the situation of mental illness. Maybe there is to some extent.......but it isn't anywhere near as simple as saying 'I am going to cope with this' and therefore coping with it. Sometimes you just can't no matter how hard you try. Sometimes you can.
Again, comparisons can be drawn here with MS. MS is out of my control, for the most part, but there are still things I can do to give my body the best chance of going longer without a relapse.
With both mental illness and MS, all you can do is arm yourself as much as possible against each Beast, but ultimately - when they decide they want to come out and play, that is what they do. You have to work hard to make sure you are as strong as you can be in order to try have the best possible outcome when they do decide to rear their ugly heads.

The mental health things I've been through in the past probably gave me better capabilities to deal with the MS. I was armed with years of advice from various therapists running through my head.
It wasn't easy, but it wasn't the crisis that it at one time, would have been.

So yes, MS is hard because, aside from the physical challenges, the uncertainty and unpredictability is a huge mental challenge. However it also brings many rewarding aspects to life. So much of my life has been changed by MS, but if you wrote them all out in a list I am pretty sure the good side would beat the bad. On the bad side would be 'I have Multiple Sclerosis', which granted is pretty damn crap. But on the good side would be a list much bigger in numbers than those four little words.

Maybe for my next post, I will compile said list ;)

Infusion Number 2.

I had my second infusion on Tuesday. It all went smoothly.  I didn’t get that fog descending over me this time, and I didn’t feel extra tired of flu like after either. Am very glad to have the second one out the way as it is the second one that has the highest risk of allergic reaction. I think that next time I won’t have to wait for the hour after it, they’ve said I can if I want to but I don’t have to. It was really quite a nice experience in one way, because the same MS nurse has been present throughout both infusions, and obviously we don’t sit and talk for the whole two hours, but because each time I’ve been the only one there for most the time, I can ask her questions that I remember as I sit there. Usually in a ten minute appointment, even with a list, there is invariably things that get forgotten, so having a whole two hours just chilling and sitting in a comfy chair with a coffee means that I remembered all sorts I had been meaning to ask.

One of the things we managed to ask that had been on my mind, was does the Tysabri start working instantly, or does it take a few infusions for it to be giving you the full ‘protection’. She said it should work fully from the first infusion, so that is good. 

I also asked how often you see the neurologist when on Tysabri and she said every six months, which is better than I thought because I had been told it was three monthly, and I don’t fancy seeing the neurologist after the infusion (because it involves a trek across the hospital) and just makes the whole day much longer, so it is good it is not so often.

Throughout the infusion, the did the usual observations, blood pressure and temperature. My BP was apparently quite high, they asked if it is usually that high. I couldn’t remember, but then thinking about it, I have had it bordering on ‘too high’ on the odd occasion I have had it taken over the last couple of years. The nurse suggested I get it monitored outside of the hospital in case it is a case of it just being high in the hospital when I might be more anxious. So I’ve made an appointment with the GP for Monday. I also need to discuss ‘the pill’ because I am over the ‘safe weight’ limit to be having it, but have got away with having no pill checks for the last two years. The nurse at the surgery did tell me that if I gained another 2lbs I wouldn’t be able to have it anymore, that was about 2 stones again…..so I guess I really ought to address the issue and come off it.

I suppose I ought to address here how things have been over the last month too. I’m a bit loathe to do so, because they haven’t been good at all. I have been really tired, and for the last 2weeks have had a headache constantly. It is also accompanied by that rushing / throbbing in the ears which I believe is pulsatile tinnitus. It drives me mad because when it happens I can’t lay on my front at all because the whooshing noise is just too much and the head pain becomes much worse. It is symptoms like this that make me feel there is some connection to a blockage in the veins in my neck. I mentioned this to the MS nurse and she said I ought to get it looked at by the GP, in the context of a different problem rather than linking it all to the MS. She said at the moment there is no evidence towards blockages in veins and MS but that there would be research in coming years, and that if it is something I feel is relevant at the moment, it should be investigated as a separate issue to the MS. When I mentioned it to the GP before, and asked for a referral to a vascular radiologist, she said it would have to go through the neurologist. I said that to the MS nurse and she said it should definitely be treated as a separate issue, and that the GP should just refer me for a simple Doppler scan.

Anyhow, perhaps the headache is connected to high blood pressure, so I will mention this all to the GP and see what happens.

Part of the problem with the fatigue over the last month, could have been made worse by the pregabalin. My own fault because I forgot to take it / skipped some doses in the middle of the month, this made me feel terrible. What I didn’t think about though was that even after I was back to full dose, it could still be making me more tired.
I was definitely a bit less tired in the week leading up to the infusion, and some of it was definitely connected to the infusion because it began when I had the first one, but it is possible I made it worse buggering about with the pregabalin.

I am also going to ask the GP about reducing that, although the withdrawal scares me, I don’t want to be on it forever without testing to see how I am without it. So I am going to very gradually reduce it over the coming months, whilst I am not working or studying, and see how it goes.

Sorry this post is all a bit disjointed, since the infusion (2 days ago) I have actually done a fair bit, which is definitely a good sign, but I still have the headache. Whilst I was having the infusion, the headache dispersed, and I hadn’t had any pain killers that day either, so I was hoping it was gone for good,  but it came back by the evening and is as bad as it was before now. So I am not feeling too lucid within this post, but I wanted to write it as I want to keep the monthly updates about the infusions going.

Overall, I am happy I have started the Tysabri. I am glad to have got the second infusion out of the way. I am excited about making it more than four or five months without a relapse. The big test as to if it is working will be if I make it to the end of June without a relapse because then it will have been over six months since the last one. Fingers crossed!

The Fatigue Fairy

Calling it a fairy doesn't really do it justice. Fatigue is a monster, a bloody horrible grey cloud of a beast that engulfs every ounce of your being.

Since the Tysabri infusion, I've been so tired. I've had fatigue on and off before with the MS, but never for such a prolonged period as this. The last relapse I had, in January, it was the fatigue that was the unmanageable aspect and the deciding factor in starting steroids. Back then, I couldn't be awake for more than a few hours, and when I was awake my eye lids were drooping, I couldn't hold my head up, I was just going through what felt like obligatory motions of being awake, waiting until I could get back in to bed.

This fatigue isn't as severe as that, but it is relentless. Since the infusion I have gone up North for a long weekend, went in to town briefly for shopping, then the next Thursday I went out for the evening. The following Saturday I had an evening out at the pub. I had a roast dinner at a friends house over Easter. I met a friend for coffee. Went in to town shopping for one hour. I had a lovely day out punting followed by beers for a friends birthday. Went to Sainsburys once. And a day out in the pub this Tuesday. 

It may sound like a lot all written down like that, but that is IT for a month. Don't get me wrong, I am really happy I have still been able to do those things and to enjoy them. But if you read the above and instead of looking at what I've done over the last month (well, just over 3weeks) imagine all the gaps in between. 

It really is hard to describe fatigue to people, because tiredness is something we all feel a lot of the time, people assume that the fatigue is a symptom they can relate to

I am fed up of people trying to attribute 'normal' reasons for the tiredness. "Oh well you've probably had too much sleep/not enough sleep/done too much/not done enough/drunk too much/not drunk enough/eaten the wrong things/watched too much TV/not enough fresh air/too much fresh air"

NO. It is not THAT kind of tiredness. Believe it or not, there was a time when I didn't have MS. I do remember what it is like to feel tired for all of those reasons. I do remember going to work after little or no sleep. But there is the crux, I still went to work. Yes it was hard, I am sure I was not as good a worker on no sleep, but I could still do it. Now, if I don't get at least 9 hours I have little hope of leaving the house even to put the rubbish out. 

I remember what it is like to lay awake unable to sleep, watching the clock, worrying about the day ahead and how much worse that day would be on such little sleep. I still have that (although it is rare to be awake watching the clock at the moment) - I still worry about the day ahead and managing it on little sleep. However now, my definition of little sleep is wildly different, and the ramifications of having 'little sleep' are much greater. 

Think of how you feel when you have had just a few hours sleep for several nights in a row, been working during the day, gone out in the evenings too. Think of that moment when you finally get some time to yourself and you are laying on the sofa just so tired, trying to focus on a conversation or some tv programme but your eyelids just keep drooping. Now imagine feeling like that ALL the time. That is the closest I can get to describing it in a way that it relates to 'regular tiredness' but even that doesn't fully explain it. 

It is different to that kind of tiredness in that it sinks in to every single part of you, and the hardest thing mentally is there is no relief from it.

I get up, I don't feel refreshed. I sleep for 8 hours solidly, I feel like I've had about 4 hours. I sleep for 9 hours solidly, I feel like I've had 4 hours. I sleep for 12 hours solidly and feel like I've had about 4hours. Saying it feels like I've had 4 hours isn't even doing it justice, as it is not comparable to any tiredness I have felt before -pre MS. It permeates every fibre of me. Every bone feels like it's made of foam, every muscle and tendon of jelly and my brain a sloppy mess of both. Trying to form a thought is like wading through mud, trying to move is a huge effort. 

Of course I can still do things, as I've shown above, I have done things. But I've been so tired when doing them, and had to save up a lot of energy in the preceding days and spend another couple of days after renewing it again. I've had to cancel a few things, because I've had to really prioritise my time. If I am going out one evening, I have to clear my diary for the next two or so days, so when I do go out, it isn't going to be something that I don't really want to do. I can't accept any invitations out of politeness, it just isn't possible. 

I have no inclination to do anything for myself. I get up in the morning, (no that isn't true, I get up early afternoon) I have a cup of coffee, beating myself up for once again not making it out of bed before midday. Maybe do the dishes or some other menial household chore and that is it, I'm knackered. I then laze on the sofa for a couple of hours before moving on to the next menial chore. 

Before the infusion, I still wasn't doing much because I wasn't working, but I was trying to go out the house most days, spreading out things - buying bread one day, milk the next.  Now, I text the boyfriend and he gets the bread and milk. I could go to the shop and buy the items, but then have no energy to do anything with them. Before the infusion I could also be spontaneous to a certain degree and if I was having a good day, I could go out for a drink on a whim.

My evenings are now pretty much spent waiting for bed. But I delay it, because I hate the bed now. Until now, I always loved my bed. I loved getting in to it and snuggling in to the covers, inhaling the smell of the pillows. Now all those things I have come to despise. The bed symbolises the prison that is this relentless tiredness. 

It is making me angry, frustrated and bored. I am mad with myself for not having any 'get up and go', for never achieving anything. I feel like I am wasting my life. What kind of life is this, if this carries on? I won't be able to do the Access course, I won't be able to work. I'd rather take my chances with the MS thanks.

I am sure it is from the Tysabri because it has been here ever since that first day. It has lifted a small bit this week - enough at least to collect my thoughts enough to write this - just as I am due for the next infusion (in 5days). If it doesn't lift, I won't want to carry on with it and that thought in itself scares the bejezus out of me. I have however read of others who have had a similar experience and it has improved after a few months, so I am really hoping that is going to be the case for me too.

This isn't just any tiredness, this is MS tiredness. And it SUCKS.

At Least I Gave It A Go.

Last weekend we travelled up North to see the boyfriends parents. They live in a lovely part of the world, full of moors and rolling hills.
One day, we decided to go for a drive and try out a walk. I fancied a forest, stream, waterfall type affair. We decided to drive to a little place called Beckhole. We got there and went to a very small local shop where we asked about the two main walks to the waterfalls. The first path started out alongside a stream, was very rocky and narrow, they said that was about a 20minute walk each way. The second path, looking at it initially looked like a much easier terrain and they said was about 30minutes each way. We stood at the crossroads eyeing up each path. I obviously wanted to take the shortest one, but peering along the stream looking at the rocks, I got too worried about it, just one slight slip and it'd be Mustard in the stream. With my balance still not perfect, and my new penchant for tripping, we decided to go for the slightly longer route.

As we started, I knew that an hour long walk was likely to be far too long, but I wanted to do it, I really wanted to do it. I thought let's just start out, and see how it goes. As soon as we started I began to get a bit edgy, knowing that as far as I walked I would have to walk back as there was no way the boyfriend could have gone and got the car to pick me up should my legs decide to fail me. It is difficult in such a situation, because you know you have to save enough energy to walk back, but you still want to push yourself to the limit just to see where that limit is. There often isn't much warning when my legs get to the point of failure, and even if I sit down and rest for a while they still don't recover completely.
We had a nice amble along a flat path for a short while (about 5minutes) then the path took a sharp ascent. There were steps built in, nothing to hold on to. I stood at the bottom and thought 'how the hell am I going to get up there?' We'd been to an art gallery over four floors the day before, and I'd only managed to see two floors of it, legs protesting about the last two flights of stairs. However a stubborn determination kicked in and I felt hell bent on getting to the top, so up I went.
Half way up, as I sat on a rock, these two walkers passed us, all kitted out with rucksacks, boots, maps. The kind of walker I used to be on such holidays. They sped up the steps with such ease, envy prickled inside me as I watched them go off in to the distance.

I finally made it to the top, and sat right down on the grass. Unable to go any further at all. I had walked all the way up, only to have to walk all the way back down, and still hadn't got to the waterfall.
We sat for a bit, nibbling at pick and mix and sipping water, as if the dry patch of grass in the middle of some trees at the top of the path was a perfectly normal place to stop for such activity.
Eventually my legs recovered enough to be able to carry me back down the steps. The boyfriend kept asking if I was okay, obviously sensing I wasn't very happy. As we got near the bottom I burst in to tears. Seeing all the walkers in their hiking gear, made me miss the person I used to be and the things I used to be able to do.
I used to love going walking in North Wales. Okay, I did moan every step of the way up the mountains, waiting for the picnic, the pub meal after the descent, but I thoroughly enjoyed the majority of those walks. It suddenly hit home that I probably will never be able to do that again. It's not like I didn't already know that. Before I even had my first MS symptoms, I'd had the thought in my head that I would never walk up a mountain again, I blamed it on my weight, my laziness. However in hindsight, I think the MS had already started.
We stood hugging for a while as I babbled on about wanting to be able to do more.
We got back to the shop and pub and sat down and had a drink.
I tried to get my head back in to its usual positive space. Started to realise that the length of the walk, was something that, if I'd done back home, I'd have been proud of. We probably walked for about 10minutes, but part of that was very uphill. I started to see this as an achievement rather than a failure. I'd had an emotional wobble, but that was understandable because being in that setting had made me grieve for the person I once was, but that in itself is no bad thing either. It's healthy to recognise these perfectly natural emotions. So I stopped beating myself up for not making it all the way, and we had a toast to the fact I'd given it a go and how far we had gone, rather than lamenting about how far we had not.
I might not make it up an entire mountain again, but the physical and emotional effort of my short walk in the woods had been just as much as all the times I'd walked up Snowdon put together, and that, surely, is just as much of an achievement.
At least I gave it a go.

Up In The Air

Last night I was thinking how that, at the moment, it really feels like everything in my life is coming together. This led me to think back to when did it fall apart to the point of needing to be put back together?

All the parts of my life had been thrown up in the air and were just there, floating about above me, banging in to each other, and just hovering with no particular order, rhyme, nor reason.

It's only on looking back now, with everything feeling like it has landed in to some kind of tangible shape, that I realise just how up in the air everything had been.

So when did that happen I started to think.

17th January 2010. I knew at the end of that year, that it had been a terrible twelve months, but I was still so in the midst of it all that I couldn't hold all of it together in one place.

On that date, I received the devastating and mind shattering news,  that a close friend has committed suicide. That is the first time I have written those words. She was my friend, and she took her own life. It still hurts and my eyes are prickled with the threat of tears as I write this now. I am sure I don't need to explain in any further detail, the emotional turmoil that followed in the massive shadow that is grief.

9th July 2010. Physical symptoms hit for the first time, in a big way and quite literally knocked me off my feet. I was given the life changing news that it might be M.S. That physical turmoil continued throughout the rest of the year, culminating in my diagnosis on 21st December.
As as result, the difficulties of 2010 did not, sadly, get left behind with a drunken chorus of Old Lang Syne, although not through want of trying!

2011 brought about a lot of changes and adjustments to life because of the M.S. I started a treatment (Copaxone), it didn't work. I moved house. I faced a redundancy and ill health retirement situation at work. I stopped doing the job I'd done for eight and a half years on 5th December, the same day that a family friend sadly lost his battle with M.S.

In two years, there had been two deaths, a life changing diagnosis, moving house and leaving my job. No wonder everything had felt up in the air for so long.

This year, 2012, I decided I needed some help in dealing with all of this, in order to stop the vicious cycle of thinking that I had gotten in to, before it spiralled in to my own self destruction.
I asked my doctor for help, perhaps a short course of CBT, I suggested. Sadly, a mental health history is akin to having a criminal record in such situations, and no help was available. As far as the NHS were concerned, here was someone with a history of mental health problems, but who was currently sane enough to be asking for help. Unfortunately funds do not stretch so far as to cover preventative measures.
Sink or swim time had come. I grabbed hold of the sides with both hands and started kicking fiercely, doing everything I could to be able to swim with the power of my own strength,
This is when I booked on to the mindfulness course, pursued ill health retirement (rather than redundancy); started a new treatment (Tysabri); began a numeracy course and applied for an Access [to Higher Education] course.
With all these things happening, my life is once again changing, but this time it is for the better.

The answer now as to where all this began, is glaringly obvious, but it is only now that it has all fallen in to place, that I can dare to look back and see just how difficult the last two years have been.

That was going to be the end of this post, right there. However, as I write this, I am sitting in a beer garden soaking up the sun and feeling full of hope and excitement for the future. I felt I had finished writing, put my iPod in and turned to face the sun.
The I realised, one massive part of my life is not mentioned in this post: The Boyfriend.
He isn't mentioned, and he should be. He isn't included in the above reflections because they were reflections on the bad in my life. However he should be mentioned now, because he has been there by my side, through all of it.
When we got together, in 2009, I was so ridiculously happy. I remember sitting on a bus and listening to 'One Day Like This' by Elbow, and just feeling so happy. The words reflected that happiness perfectly.
Since 2010 I have not listened to that song. I have heard it a few times in passing, but I have not really felt the words like I did on that bus in 2009.
Today, after writing most of this and listening to the iPod, I remembered that song. I put it on (repeat, of course) and for the first time in more than two years, I really felt the happiness again.

So, to The Boyfriend, if you read this, thank you for being there with me through the last two years and for still being here now. You make me just as happy as you did when we met, and here's to the next two years being focussed on us, just as the last two should have been.

I'll leave you with the lyrics of One Day Like This - by Elbow, as they really do sum up just how happy I feel right now, and how relieved I am to have shaken off the darkness that has been the last two years.

Drinking in the morning sun
Blinking in the morning sun
Shaking off the heavy one
Heavy like a loaded gun

What made me behave that way?
Using words I never say
I can only think it must be love
Oh, anyway, it's looking like a beautiful day

Someone tell me how I feel
It's silly wrong but vivid right
Oh, kiss me like the final meal
Yeah, kiss me like we die tonight

Cause holy cow, I love your eyes
And only now I see the light
Yeah, lying with me half-awake
Oh, anyway, it's looking like a beautiful day

When my face is chamois-creased
If you think I'll wink, I did
Laugh politely at repeats
Yeah, kiss me when my lips are thin

Cause holy cow, I love your eyes
And only now I see you like
Yeah, lying with me half-awake
Stumbling over what to say
Well, anyway, it's looking like a beautiful day

So throw those curtains wide!
One day like this a year'd see me right! 

Infusion number 1.

Today I had my first Tysabri infusion. It all went very smoothly. I was most nervous about them getting the cannula in but the nurse was obviously a pro, even that was fine.
The first and second infusion are the ones that carry the risk of an allergic reaction, so I was also a little bit nervous about that, but I knew that if anything did happen, it'd be fine because I was in a hospital with two nurses (which was a nurse to patient ratio of 2:1!)

The chair was really comfortable, which was the other thing I was worried about, imagining it being like sitting in a waiting room for 2hours, but instead it was a proper recliner kind of lazee boy style chair. Although the recline didn't work because they had no place to plug it in, but that didn't matter!

Once the cannula was in, the infusion started to go in, it felt a tiny bit cold but nothing more than I would expect from any kind of fluid going in to a vein. The MS nurse came down for a chat, and stayed for the whole infusion, hence the 2 nurses, so that was nice and reassuring.

I got a slightly odd taste in my mouth after about half an hour, nothing drastic no where near as strong as with steroids although a similar metallic taste. Around the same time I also suddenly felt really tired and like some brain fog had descended. I sent the boyfriend off to get some sweets and shut my eyes for a bit. He came back with a paper on which I could only get one clue on the crossword (it's the one I often do with not much problem, certainly better than one clue!)
I know a lot of people have described feeling tired either during or after the infusion and this is often put down to the busyness of the day and having travelled to the hospital etc. However I really don't feel that was to blame in my case, it was quite a strong level of tiredness and going to the hospital isn't exactly a huge journey as I'm lucky enough to live locally to it. I've done more than sit in a car for 10minutes and then in a chair for 30minutes over recent weeks and not felt anywhere near as tired. I'd had a good nights sleep and had a quiet weekend, kept hydrated etc etc, and generally tried to make sure I was in the best health possible ready for today. Maybe it was the relief coming out at having been a bit nervous, who knows, either way, I was tired and my brain wouldn't think.

The infusion took an hour altogether, with an hour to wait after to check for any allergic reactions. They said that after the second infusion I won't have to wait that hour if I don't want. The did 15minute obs (just blood pressure and temperature). My blood pressure went down each time they took it over the the two hours, I guess I must have been chilling out the longer I was there in the reclining comfy chair, sipping nice chilled water from the machine.

When we got home, I really just had to go to bed. I didn't feel ill, just really tired like it was bed time. I had weird sleep to start with sort of in and out and more just laying there not moving, I didn't even want to turn over and put the radio on though which is most unusual for me. I just felt I wanted to lay in the dark and quiet and just be for a while. Eventually I did drift off and the boyfriend woke me up for some tea after about an hour and a half. I still felt pretty pants, my face felt quite flushed and my hands and feet were all cold and clammy. That only last about an hour though and then I felt right as rain. Or, well, as right as rain as I ever do!

I am hopeful about the future, just got to get the second infusion over and I'm on the home straight. The nurse said that it is meant to reduce relapse rates by 70-80%, which is the best of any DMD (out of interferons, copaxone and fingolimod). So I am very happy to be having this treatment, and to be JC negative. The thought of no relapses, or even just one a year, just seems too good to be true, but I am more than ready for some good luck and definitely up for some reduction in relapse action! I am just getting to the point where I started feeling good again after the relapse in January, (apart from a cold at the end of last week which really knocked me for six, but that is mostly gone now) and usually I only feel that way for a couple of weeks before another relapse hits, the thought that this feeling could last and dare I say it even get better than this, is really quite an exciting prospect.
Tentatively excited I would say is how I feel mentally, and physically exactly the same as before I had it, which at this point has got to be a good thing.

Tysabri Tuesday

I saw the Neurologist yesterday for the follow up appointment following the one in Jan where we discussed Tysabri and he ordered the MRI scan. The appointment didn't hold any surprises because I had already received a letter about the scan results.
They had only done a scan of my brain, and a lot of the symptoms I've had in recent relapses have been synonymous with spinal lesions, so I was worried they wouldn't find anything at all thus making me not eligible for Tysabri. However they did find one small enhancing lesion. Apparently the radiologist had written up the report saying that there was no new lesions but when it was looked at by two neurologists they both agreed that there was a new lesion. He showed us the scan and the lesion was in a very similar place to an old one, but when he flicked between the two screens you could see it had moved ever so slightly.
I had always wondered why exactly MS was so hard to diagnose. I mean, I get that it is hard to get to the point of seeing a neurologist and having a MRI, but I've always thought that surely once you get the MRI and it shows lesions, it is obvious right? Now I see where I was wrong in thinking that. This lesion, although obvious, was open to interpretation and the radiologist obviously had different views to the neurologists. If this had been my first relapse, it may well not have led even to a diagnosis of CIS. As it was, my very first scan was so covered in lesions it left no one in any doubt of the cause. For this I do feel lucky, to have had such a BAM first relapse, meant that I didn't have that huge road to diagnosis that so many unfortunately do.
It was hard enough waiting the 6months between the first relapse and diagnosis, I can't imagine how hard it must be having to be in limbo land for years and years.

In the bumph they had given me to read about Tysabri, it said that you are automatically referred to a dermatologist to check you don't have any skin cancers present, because Tysabri has been linked to an increase in that condition. I asked him about that, and he said this was no longer routine, and that it was at the start when 'people were scared about it'. I showed him a mole on my back that I've had concerns about for a while, and he decided to refer me anyway, just to be on the safe side.

He also confirmed I am negative for the JC virus, which is very good news, meaning my risk of PML is minimal. He wrote 1 in 1000 on the consent form, but it really is much much lower, only a theoretical risk for if I contract the virus whilst on the treatment, which in itself would be unusual as an adult, and even if I did, would take several years to develop to PML.

I also asked him about vitamin D, if it is okay to be taking it without a blood test to show I am deficient. He said a blood test would be a difficult thing anyway because what is deficient? He said if you took a cross section of people in Cambridge and tested them all, and took the average, it wouldn't mean anything because it is quite likely most people this far from the equator are all deficient. He said that he would think any dose up to 5000iu's a day would be safe. I had been taking only 800! He said that 5000 is equivalent to just 20minutes in the sun, that really surprised me. After, we were wondering just how much of your body has to be in the sun for that 20minutes to absorb 5000iu's?! Is that just your face, or topless sunbathing? Surely it makes a difference?!


Anyhow, the upshot of the appointment was that I can start Tysabri this Tuesday! I am excited, I am hopeful and I am nervous.
Nervous more of the procedure itself, having the cannula fitted and all that hassle with finding a vein. Sitting in the discharge lounge of the hospital with my gross arms on show. (The neuro ward has been shut for months because the lifts are broken, so now its various functions are dispersed around the hospital in 'temporary' locations. I suspect they have no money to fix the lift, and that perhaps in April when the new financial year kicks in, it'll get fixed. Because, really, can it take 9months to fix a lift?!!)

I am not thinking too much about what if Tysabri doesn't work. Of course I have in my head an awareness of other options and am not in total denial about the possibility of it not working, however I feel that for now a positive attitude is for the best.
It will work, and I will not have any more relapses for a very long time.

New Life Begins Here.

I had my interview for an Access Course yesterday, that I want to start in September. I've wanted to go to Uni for years but it's always seemed such an overwhelming goal, to give up my job and bite that bullet. Now I've lost that job anyway. I'd been browsing through jobs and all the ones I could do with my limited qualifications were boring boring boring. I really had to think to myself 'is this all I want from life?' 
The answer was no.
The next question was 'how do I get more?'
The answer was further studying. 

So I started seriously looking in to ways to do this, and an Access course seemed the best route considering my background with education. (Those who've read my Spartacus blog post will know I left school at 14 with no qualifications whatsoever.)

Luckily, in 2001, I went to college and did an English GCSE. I've never 'used' it since, in that having that alone as a GCSE has never come in to play. Now, it does. For the Access course you need to already have either maths or english GCSE. I've was initially under the impression I would need to do maths alongside the access course. My maths is soooo bad, no, let me rephrase, my numeracy is sooo bad. I decided to undertake a numeracy course under the 'skills for life' scheme to prepare for the seemingly unavoidable maths GCSE. I had an assessment a few weeks ago and have done two weeks of the course (is just one evening a week). 
Having now researched the university courses I want to do, none of them require it. 
So the best news of the day, I don't need to do a maths GCSE at the same time as the access course!! Wooo! 
The second best news of the day, is I got accepted on to the access course. 

The level of help available at the college is simply astounding. When I turned up for the interview, there were dozens of people waiting for various 'welcome events' in a corridor, no seats of course. I managed to find a small window sill to perch on and rested my chin on my stick.
A lady then came along and said to about 5 of us who were waiting for the Access course interviews to follow her. We went down a few corridors and I was trailing behind, I was about to loose them as they turned yet another corner when this other woman, who I'd never seen before, came up to me and said 'Are you Sarah?' Wow, the relief that came over me at that point.
She stayed with me throughout the interview, literacy assessments and everything. She is going to sort out a scribe to take notes for my during lessons, a carparking space wherever I need it that is closest to where I am having classes that day, a key to the lifts, longer time to sit exams if required, a padded and high backed chair. 
It was all done with such ease and no hint of patronising. I didn't have to ask for any of it (in fact I was resisting some of, particularly the scribe) but I am simply overwhelmed by the support available. I don't want to appear different to the other students by having a support worker sat with me in classes, but they soon allayed my fears about that. The said the support worker would just be like part of the class, taking part in debates etc. In fact the support worker seemed so keen to sit in on this course she was chomping at the bit to have me accept her help! 
I decided to put aside my memories of school, of being bullied because I had a learning support assistant attend every lesson with me. That was for entirely different reasons though (ones I didn't agree with at the time and still don't) and with an entirely different sent of people. A group of 30+ 14/15yr olds are going to be generally much less accepting than a smaller group of mature students. 
So I accepted all the help they offered. I am still not sure on a scribe, but having done a short written test before the interview my arm was very weak and painful, so I thought maybe it wouldn't be such a bad idea.

I then did the literacy test and flew through that, beating myself for getting one wrong, only to be told it was a very good score, so that was a confidence boost.

There is however, one blot on the landscape, how the hell am I going to pay for all this. Tuition fees aren't a problem, (there is enough help available for them) but how will I pay my bills? The course is technically full time (16hrs a week at college, 16hrs at home) and I've been told that DWP often turn one down for ESA if you are doing what the college label a full time course. 
Money schomey. I WILL do this. I CAN do this. 


And why is my life going in this direction? Because of MS. Every cloud and all that. 

Breathe through THIS? Are you SERIOUS?!

I don't know why I've come to a bit of a block with my blog. I need to get over it and so have just opened a new post and started typing with no intent other than posting a post.

So, what's been happening? Mindfulness is still going well, although I've not been practising it as much as I should, it is still a really useful tool for dealing with anything in life not just pain. I've been finding myself much happier just being, not having the constant need to block everything out. I never used to be happy sitting in silence, now I am quite comfortable to sit, soberly, with no music or television on and just exist and inhabit my body and mind as fully as I can. To start with when doing the Mindfulness, I really struggled with the concept of 'moving towards' the unpleasant. Surely not I thought? How on earth can concentrating on something like pain make it any better? For a couple of weeks I really couldn't get my head around this idea. Then it sort of fell in to place. By blocking out the unpleasant, we also inadvertently block out the pleasant. If I'm constantly trying to ignore a pain in my shoulders I am not just blocking out the pain in my shoulders but numbing myself to all bodily experiences. There is also the realisation that all pain is fluid, ever changing. When blocking out pain, we can't actually totally block it out as we are always aware that this pain exists. For example recently I've had a really bad neck that has been very painful indeed. By moving towards this pain I was constantly aware of when it changed and as such the times when it was better. Even though it was one of the worst pains I've experienced there were still moments where there was some relief from it and this in itself was a very pleasant experience. By trying to ignore the pain I would've, got up thinking 'I am in pain today' and then done everything I could to ignore the pain. By moving towards the pain, there were times when I was, for example, laying on the sofa and I realised the pain level had actually dropped quite significantly. So rather than it being 'Today I Hurt' it was 'Today I Hurt and......' Pain doesn't have to be solid, if we focus on it we soon realise the even smallest fluctuations in it.
 The same goes for mental pain, if I'm feeling like a bout of depression is coming on I usually try and resist it, yet by doing this I am also blocking out any nice feelings I might be having at the same time and also not looking at the reason for why the depression might be appearing. If I move towards the fact I'm not feeling so chipper, sometimes I can find a reason for it and as such work on that reason or even just by having found a reason begin to feel better. I think with depression I get so scared of NOT finding a reason and it being clinical (which in my experience is harder to move through) that I do everything I can not to think about it, but more often than not this just prolongs it with The Beast grumbling away in the back ground and I'm aware of its threat hanging over me. If I face up to it as soon as it appears, it no longer seems like The Beast, more of a small ant or something - it can be dealt with, doesn't have to be feared and also has its uses.

I haven't had to apply this thinking in a real depression situation as yet, and I am sure that when (if?!) I do, it will be much easier said that done. Let me tell you, with that neck pain it was very very difficult to breath through it and move towards it. There were points when I was thinking "f**k this hippy crap, this f**king hurts go away go away go AWAY" and I am sure I will have times where I have the same response to mental pain. Yet I can already see and feel the benefits of changing my way of thinking about myself, about others and about the world, so I shall continue to do this and practise it and hopefully get better at it with time.

My Spartacus Story

I wrote this just over a month ago, before I had this blog. I was thinking of writing a blog post about being out of work and realised it might be a good idea to contain a bit of my history within this blog so that future posts have more context, so here is My Spartacus Story that I wrote as part of the campaign against the current changes happening from the Welfare Reform Bill.

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MY SPARTACUS STORY (abridged)

I am writing this now because I have a physical disability and am relying on DLA and soon probably other benefits too as I face the loss of my job. I did however, have experience of the welfare system as a young adult, and so have included my earlier experience of mental health problems. If you wish to skip that part and go directly to my current circumstances, and fears, then go straight to paragraph 6.

As a teenager I suffered from mental health problems. I began self-harming at the age of 11 and by the age of 13 teachers, and subsequently parents, found out. I was seen as an outpatient and given Prozac; this gave me terrible panic attacks. I was admitted to an adolescent psychiatric ward in January 1997 for 2months, where I was put on seroxat, no panic attacks, but first ever suicide attempt followed soon after. I returned to school, but the ridiculing at the hands of others at my difference and unusual absence was too much to bear and I took an overdose not long after being back. Not to mention, the school had not let me be part of normal lessons contrary to what they had promised the hospital at the discharge meeting. After this overdose I was unofficially expelled, just wiped off their records and asked never to step foot on the premises again. The year book produced just under 2years later lists ‘those who left us early’ and includes those expelled for drug dealing, bulling and other atrocities, but none so serious as mental health issues, for which I was inexplicably deleted from the memory of the school.
In October of that year, now 14years old, I was readmitted to the same hospital for a 2week assessment. This two weeks became a year in total. In the February I was detained under the Mental Health Act on a Section3 (6months) due to repeated attempts to take my life. The next October, 1998, I was transferred to a secure unit, where it became apparent that this could easily be my life for the next few years unless I did something about it. I appealed against my section, and won, much to the dismay of the consultant who had said “You definitely won’t get off at this one or the next one, you could win an appeal at the one after that, but I wouldn’t support it” – they were 1year sections by that point too. So he had his idea of my life bagged up, secured up even, having met me for probably less than 3hours in total, for the next 3years. I was still very ill, but not as ill as those who sat alongside me in the smoking room. I had a supportive family, and a place to be looked after by loving parents, which is more than most the other patients had.

I left the secure unit in May 1998, moved back in with my parents, and attended a therapeutic community day centre. After 6months, I moved in to a supported living hostel. Despite all the love and support my parents gave me, I had become institutionalised and used to the structure provided by anonymous staff rather than loving parents. I also wanted to live in the town and not have to do the the 2hours bus journey every day to get to the day centre from my parents village. Hear began my journey with the welfare system. I put in a claim for income support, as I was still attending the therapeutic community daily for 6hours, and so there was no way I could work. As soon as I moved in to the hostel, I put in an application to the council for accommodation as there was a 3year time limit on staying at the hostel so it was standard procedure to apply as soon as you moved in. Due to my mental health history, they put me in a high medical needs band and I got a flat of ‘my own’ within a few short months. By August 2000, a couple of months after turning 18, I had moved out and in to totally independent living. I had expected to be staying in the supported living hostel for at least 2years, so it was a bit of a shock. I was still attending the therapeutic community daily, still self-harming, still suicidal, battling an eating disorder, but doing everything I could to get better and stay out of hospital. I was receiving DLA by this point, it was, if I recall correctly, set at £200 a month & helped me in my move to independence. In Sept 2001 I got a boyfriend, he wanted to move in and as he was working, he couldn’t do this legally with me claiming benefits. So after a while, I ditched everything and got a full time job, at a nursing centre. Having not particularly worked before save for the odd pub shift, I called up the benefits office, proudly declaring my intentions to work and that I no longer needed their help. I lasted 3weeks in the job before meltdown. I went crawling back to the benefits office, admitting defeat, asking for help again but because my boyfriend was living with me, his earnings, of about £10,000  a year, were considered enough for us both to live on. He paid all the bills, rent etc. I lived on my DLA, trying to get over the humiliation and set back I had put myself through of going in to work and failing after such a short time. After a few months, I applied for a part time job, just 2 days a week, I did this for a few months before the job became full time. I was by no means ‘well’ at this point, there were still many incidents of self-harm which remained secret from loved ones and employer alike. Such was my determination to work and be part of what is considered normal and accepted in society, that I managed to carry. Sometime during this period, my DLA was turned down at renewal, I forget why but it was, and that was the end of my journey with the benefit system for some time.

In 2003 I applied for a job working for a large public sector organisation and was lucky enough, somehow, to be successful. During my time working there, my mental health has been far from perfect. Up until 2005, I was still having weekly therapy sessions with my key worker from the day centre. In 2005, this service was shut down due to budget cuts at the Primary Care Trust. A particularly serious attempt on my life followed, leaving me in a coma for several days with the doctors unsure if I would wake up (I had two weeks off work in total).  After that, I could no longer cope with the job I was doing (having been made redundant due to centralisation from the first one) and I put in another claim for DLA, this was awarded for 1year.

Due to being awarded DLA, I could apply for a part time job that came up in a department I had always wanted to work in, it kept me in work and off full benefits, I was still paying all my rent, still paying tax and national insurance, and still had the dignity of being in work. During that year, I really took time for myself, I saw a brilliant psychiatrist who put me on new medications being very forward thinking that he was. Most psychiatrists in adult services see you ever 6months and prescribe medication, but no therapy would be involved. I was lucky enough to get this lovely doctor on his 1year rotation, his special interest by my diagnosis.

Being part time at work meant I could start new medications on the days I wasn’t at work. Take one day a week to have therapy. One of the medications had to be increased every two weeks due to the risk of a fatal rash developing if it was increased too fast. Every time I increased it, I became suicidal, I knew it was down to the medication but it didn’t make it feel any less real at the time. I could time all this to not miss work, and to stay in my part time job, having DLA enabled me to do that. After a year of working and having time to finally stabilise things whilst being largely ‘out of the mental health system’, I was ready to go full time and a position came up so I didn’t attempt to renew the DLA, not feeling I needed it anymore, and along things plodded, in stability and relative happiness. I got a boyfriend (the last relationship ended in 2005) and we were so happy, and in love (and still are). Then there was the fateful summer of 2010.

I woke up on July 9^th 2010, one of the hottest days of that year so far. I got out of bed and the room was spinning, I felt like I’d had about 8pints of cider. I stumbled about, exclaiming to my boyfriend as I staggered about how odd this feeling was. I put it down to the heat, but feeling rather weak, got on a bus instead of cycle, and got the train to London for a hen do. I stayed sober throughout, not drinking much at all, no longer dizzy, but slightly not right still the same. I stayed at my friend’s house in London, waking up to the phenomenon that is double vision, or diplopia as it became on my medical notes, along with the room spinney dizziness that had returned. I kept rubbing my eyes, blinking, assuming this would go away, that I just hadn’t woken up properly yet. I walked about and waited, still no improvement, laid back down, my two friends still fast asleep. Skip forward a few days, couple of GP appointments, and a diagnosis of labyrinthitis, I was told by a GP I needed to get to A&E, I was rather shocked at this suggestion, A&E for an ear infection, surely not?! Anyhow, I managed to get a lift to the hospital and waited together with my boyfriend for hours in the waiting room. Eventually, they started mentioning brain scans, and I started getting scared. All this time, however, I didn’t believe myself. All the years of having mental illness, physical illness was always blamed on stress, or something I’ve done to myself, I didn’t believe there could be anything really wrong with me. It must be all in my head I thought. They did a CT scan, which came back clear, and stuck me on a ward by about 4am, about 15hours since I’d got there. The next days are all a bit of a blur, but the included the starting of going numb down my left side, getting woken by severe stabbing pains in between my shoulder blades, losing  the ability to walk. I had a brain MRI which showed lesions, patches of demyelination. I had no idea what this was, but was told it was a one off, probably as a result of a gastric bug I had picked up when I visited a friend in Ukraine a month before. After a week, I was discharged, using two crutches for short distances and a wheelchair for anything more, which was unavailable on the NHS so I went to the Red Cross who loan them out on a temporary basis. Over the coming weeks, my walking gradually improved, the feeling slowly returned and the pain in the shoulders eased. My walking however did not improve completely, the sensation did not return to normal sensation and the pain did not completely disappear. In September, I returned to my job on reduced hours, where I continued to try and build them up to get back to full time. By early November, I could walk probably over a mile, I was back on my bike, I was going great guns. Still getting tired, still not back to ‘normal’ but so much better. Then suddenly one day, I just couldn’t. I had no idea why, nothing I could put my finger on as such, I just couldn’t walk as far and could no longer balance on the bike. I had a follow up scan and a neurologist appointment on 20^th December, where they confirmed that I had new lesions (oh so that’s what the suddenly being able to do less was) and gave me the diagnosis of Relapse Remitting Multiple Sclerosis, and gave me some steroids for the relapse.

In February 2011, I had another relapse, more steroids. Still not over the first two, but was told that it can take up to 6months for the healing to fully occur, but that after 6months any symptoms are permanent. So that pain between my shoulders that stops me sitting on certain chairs, sitting for too long? Yes, permanent. That seeing double on looking to the left? Yes, permanent. That weird sensation down my left torso where I can’t tell if something is hot or cold and it feels like I’ve been slathered in tiger balm? Yes, permanent. Getting so tired I can’t do anything? Yes, permanent. I was still not able to work full time, and considering my job was meant to be covering a shift pattern and because of budget cuts the office was already running at 25% less than it should be, I was worried I was going to lose my job as it became apparent I wasn’t going to be relieved of the symptoms that were stopping me being there, working full time and working shifts. I was there, but not in my full capacity. I got in touch with a disability charity, who helped me put in a claim for DLA which I was awarded for two years, until February 2013.

After another bout of steroids, and all the fun this brings -side effects include sleeplessness, constipation, bitter taste, feeling like you have a second skin, frequent urination. The side effects are okay though, it’s the withdrawal symptoms where you feel like every joint is sprained, can’t walk, can’t use crutches, just have to stay in bed for 2days until it passes. I started daily injections of Disease Modifying Drugs (DMDs), to try and slow the progression of the M.S. I got horrible site reactions, each one swelling up to the size of the biggest mosquito bites I’ve ever had, itchy like crazy and hard lumps, some of which still remain. The site reactions however, feel like nothing to deal with compared to the possibilities of the alternatives. Basically with DMDs for M.S, you initially have two choices, the Interferon’s or Copaxone. I was directed to the M.S decisions website by the M.S nurse, and my decision was based mainly on what I read on there, and other reputable online sources. Interferon’s, although generally don’t give site reactions, have the common side effect of having flu like symptoms for 24-48hours after injecting. Depending on which interferon you go for, this is anything from one to three times a week. Interferon’s are also not recommended for people with a  history of depression. I was, and still am, trying to desperately cling on to my job, so for the stability that Copaxone felt it could provide by comparison, I decided that daily injections and site reactions were much easier to deal with than flu symptoms and depression.

So on 1^st March 2011, I began Copaxone, full of hope that it would stave off what appeared to be rather regular relapses. In July 2011, another relapse hit, I also got very depressed. Was it a symptom of the relapse, or a natural response to dealing with having been diagnosed with a degenerative illness? Who knows, not me, but it was what it was. I stayed at work, but just felt so bleak. In the September, I had a routine appointment with the MS nurse, who wanted me to see the neurologist as things still hadn’t improved, I informed him of some of my newer, more embarrassing symptoms (let’s just say there were of the bowel) and he confirmed it was a relapse and gave more steroids. Too early to consider Copaxone a treatment failure for him, and too early for me to give up on it given the alternatives, we carried on with it. I have expressed my fears of going on to an interferon to the neurologist and to the MS nurse, that I would lose my job if I had to have more time off to get used to it, and also my fears with depression. The flippant response has always been “oh well, we’d just treat that”. They have no idea that it is not that easy. They say they would monitor me, would they? Of course not. Unless, by monitor, they mean carry on with the 3monthly appointments that I have now, and leave it up to me to call if I feel depressed and if I do refer me to the GP for some jolly old Prozac. Little do they know, I can’t take Prozac, seroxat, citalopram, sertraline, venlafaxine, lofepramine, amitriptyline or anything other tricyclic or SSRI. The only anti-depressant I’ve ever responded to is moclobemide, one of the newer MAOI’s, with which, one can’t take any cold & flu remedies, which if was to be on a drug which makes me feel I have flu 3times a week, ain’t gonna be much fun and ain’t gonna make for staying in a job for very long. All of that aside, the flu, the depression, I could probably cope with if it wasn’t for the fear of losing the job. I could also maybe cope with the depression, if I had some kind of back up or offer of help from the mental health services. Remember those budget cuts I mentioned from 2005? The ripples are still being well and truly felt. After the bout of depression in summer 2011 I asked my GP if there was any chance of getting some Cognitive Behavioural Therapy, as I had responded well to a short course of that as a young teen, and it is recommended for dealing with M.S. She referred me for an assessment, which came up a blank. There is no mental health support for someone who has a history of mental illness and is newly diagnosed with a degenerative illness. I can cope with this, but understand it does make me somewhat nervous to try a drug, or new situations, that might push me to the point of not being able to cope.

Oh, yes, this is probably the point where I should explain a bit about the job situation. After all that timing of the drugs, choosing the DMD partly based on work, taking steroids so the withdrawal symptoms are at the weekend, I am losing my job anyway, due to the centralisation of the office yet again. As well as centralising, meaning a commute that I couldn’t manage, the job itself is changing, meaning shifts I couldn’t manage. Even if I could get there, the setup of the new office will be such that it would be too much back ground noise for my poor concentration levels to cope with. The job itself requires too much cognitive function which I feel I have lost. So my only option is to ask for medical retirement, or redundancy. Obviously redundancy would be a one off payment that might see me through 2months, 3 at a push, and then I’d be stuck. So medical retirement and a pay-out of the pension I’ve been paying in to for the last 8.5 years, seems like the best option, to keep the metaphorical welfare wolf from the door as much as possible.
Once I found all this out, and it became apparent I was losing the only job I’ve ever felt safe working in, ever enjoyed, the environment I’ve known for the majority of my adult life, I was rather stressed, and as much as I tried not to be, I was. Thus, making symptoms worse. This, coupled with the death of a family friend (who sadly lost his battle with his own M.S journey), meant my being signed off for a month over Christmas. I was due to return this Monday, today, but sadly, after toiling away online last Tuesday, reading about the Spartacus report, and trying to do my bit, I’ve had another relapse and am on another course of steroids. This relapse bought fatigue like I’ve never experienced before (able to be awake for about 5hours a day if I did nothing), both legs buckling when I walk, head spinning, nausea.

I am gutted I can’t go back to work; I want to go back not just fade out. The office is moving at the end of April, so I have to be gone by then anyway. I am filled with fear as to what I will do.
It seems the Copaxone is not working, so I need to consider interferon (Oh, did I mention, after interferon’s is another option a monthly infusion, which has the lovely side effect of sudden death), but if I take that, am I going to be able to hold down another job? Is a new employer, if I’m lucky enough to find one willing to take me on,   really going to tolerate the level of sickness that taking an interferon could bring?  So do I push for this change now, & try and be stable by the time I need a new job? Or do I not take the risk of depression in an already stressful time, and ask to jump straight to the one with sudden death as a risk?

At the moment, I am still lucky enough to be being paid full time, however obviously when I lose this job, I will look for a part time job, as I just can’t manage full time. I can’t work enough to support myself, living in the cheapest accommodation I can, a one bed council flat. I am not in a mansion, I am not asking for the world. I am asking to be able to manage my life in the best way I can, taking as little from the state as I can in the process. DLA enables me to do this, without it, I'd be out of work altogether, thus claiming housing benefit, council tax benefit, employment support allowance, not paying income tax and not paying national insurance. Aside from all that nonsensical ridiculousness of it all, I don’t want to be sat around the house all day, my GP doesn’t want me to be sat around the house all day, and this will do no good for my physical or mental health. I NEED DLA to be able to work, to be able to pay income tax, national insurance, council tax and rent. I NEED DLA to have my dignity, health and happiness. I could go in to the ins and outs of what else DLA pays for, but I think that you should be able to imagine that now, with the rather lengthy history I have provided, and after all this isn’t a DLA application, it is a piece of writing from the heart. Needless to say there are many other ways in which DLA helps me, but what can make more sense than being able to stay in work, costing the state less and making a contribution?

I am so scared for my future. To summarise the fears I feel I face are, losing my job in April this year, hopefully getting medical retirement, but this is a whole battle I have still to face. Once I am gone from this job, I will look for part time work; I may or may not find an employer willing to take on a disabled person with an erratic and unpredictable illness. If I am lucky enough to find a new job and get settled, I then have the DLA renewal to face early next year. With PIP being introduced in April 2013, I really can’t imagine a DLA renewal being awarded 2 months before. If this is turned down, how do I live? I will have to quit the job I might have just started settling in to. And when do I fit in the change of medication to all this? The change of medication that isn’t to manage day to day symptoms, but something that needs to be done to try and slow down the progression of this beast that is M.S. Every month this is put off, is potentially a month taken from my future. I am scared, I am scared of M.S, scared of not knowing how long my body will hold out, scared of not knowing with each relapse what symptoms will remain with me forever, scared of depression, scared of feeling suicidal, scared of dying at my own hands, scared of dying of M.S, scared of how this is affecting my loved ones. However more than all of those fears, I am scared of David Cameron and his Welfare Reform Bill and the ability that one small group of people with no experience of life on the bread line, has to make all the things I, and millions of other disabled people and their carers, have to face anyway, so much harder.

None of these things in my life can be helped, they are the hand I was dealt and I don’t proportion any blame or expect special treatment or sympathy because of it.  But I do expect to be able to LIVE, ideally, with some dignity, although in the current climate maybe dignity is just too much to ask, but living? Surely not.