I'm back, thanks coronavirus.

Well, hello blog. I almost forgot I had this little space of internet in which to vent my frustrations and thoughts. Since I last wrote here, I've had two children and done a degree, so while numerous blog posts have begun in my brain, they've never had time to translate into the written word. Then along came coronavirus, and suddenly, I - along with billions of others across the world - find myself in what would just a few short months ago, been an unimaginable position, one in which time is suddenly in abundance.
I've been obsessed with reading about coronavirus since initial reports started coming out in January of a strange virus in Wuhan. My anxiety levels about it have been very high, like many others, I've known this was coming. My partner has COPD, meaning he would be at high risk of complications (or death) if he were to catch it. This was what was predominantly occupying my thoughts over the previous months, I was constantly on at my partner to recognise his own status as a 'vulnerable person' in relation to covid-19, saying he must follow the government advice for this category of people once it was released. However for some strange reason (that I'm sure a psychologist could have fun trying to unpick), I never at any point considered myself to be vulnerable. Since the news that people with MS are also classed as vulnerable, this last week has been an emotional rollercoaster as a reality for which I was completely unprepared, despite months of obsessing about covid-19, began to become starkly clear.

On Sunday 15th March, our 6 year old son came down with a random fever, meaning with the advice as it was then, we had to isolate him for 7 days. On Monday 16th March, Boris Johnson gave a press release stating that if anyone in a household had symptoms (namely a fever and/or a new continuous cough), then all members of the household must isolate for 14 days, and that anyone over the age of 70, or with certain pre-existing health conditions, or who is pregnant, must, from this weekend, be 'particularly stringent with social distancing measures'. So in the space of 48 hours, I went from planning to be going out swimming with my kids, seeing family and friends, planning for school trips and events over easter, to being at home for the next 13 weeks. Once I realised MS was on the list of pre-existing conditions, the reality really began to sink in. That meant as a family of four, comprising of two vulnerable adults, a 6 year old and a 20 month old, we all had to stay home, and not see anyone else, not even our closest family. How do you explain that to such young children? That the grandparents they have seen once or twice a week, every week of their lives, they suddenly cannot see for at least 3 months? The thought of my children's inevitable emotional distress was too much to bear, and that evening I broke down in tears as the reality of all of this really hit home. I couldn't sleep at all that night, mainly worrying about what would happen to my MS if I could no longer receive my infusions were the healthcare system to collapse when it became overwhelmed by covid-19 cases.

It is now Thursday (I think? maybe it is Friday?....*checks calender*.... oh yeah, it is Friday) and after a very emotional week, I feel like I am finally turning a corner in terms of being able to maintain a positive outlook; I think a turning point for me in that was confirmation from my MS nurse that I would still be able to receive my tysabri infusions. It is a huge adjustment for all of us, and I've decided that I need to start blogging again to have some kind of outlet for my thoughts, that I previously would have been able to deal with in other ways. So expect to hear more from me in the coming weeks and months, as I go through the ups and downs of this very emotional rollercoaster that is self isolation as a family of four.

The Light At The End Of The Tunnel I Don't Want To Leave.

Today I found myself seeing a light at the end of the tunnel, but it’s a light I didn't want to be seeing.

I've been breastfeeding my son for 12 months now, it’s been a rocky, but amazing journey, and one that I hoped to continue until such a time that we both felt ready to stop. Unfortunately, MS seems to have other ideas, and after some relatively relapse free pregnancy and post natal months, it has come back with a bang.  I had a small amount of activity a couple of months ago, and then last weekend just in time for my sons 1^st birthday, a whole host of new symptoms made an appearance. So it seems the MS is returning to its aggressive ways of pre Tysabri and pre pregnancy and throwing me a relapse every couple of months. With this one being as debilitating as it is, it is clear that I can no longer ignore it and I need to do something. The only something that I have up my sleeve is to go back on Tysabri, and to do that, I have to stop breastfeeding.

I always thought I’d put my son before me no matter what, but now here I am faced with - what feels like - a decision between my health and his well-being and happiness. He loves boob, it nourishes him; it comforts him, it settles him to sleep for naps, for bedtime and for the multiple times he wakes up in the night because he’s a normal 12 month old baby, it provides him with a boost when he comes in to contact with germs that his underdeveloped immune system can’t fight, it soothes his pain when he hurts himself, it is a special relationship for which we have both worked hard to get this far. I am a strong believer in ‘attachment parenting’ as is in vogue to label it these days, I prefer to call it simply, ‘parenting’. I firmly believe that if dependency needs are met in these precious formative years then independence will naturally follow and our children will flourish. So here is my struggle, my son does not want to stop breastfeeding, neither of us are ready for this part of our relationship to end, it goes against everything I believe in as a mother to wean him before he is ready. But he needs me to be healthy too. Breastfeeding meets a lot of his needs but it in no way meets all of them anymore. Gone is the newborn for whom the answer was nearly always boob even if it wasn't the original problem. He is one year old and his needs are more complex now. He needs me to cook him healthy meals, he needs me to dress him and change his nappy, he needs me to be able to pick him up and cuddle him when we go new places and he is scared but curious and he wants to see the world from the security of mums embrace. He needs me to be able to take him places, to lift him up slides and push him on swings, he needs me to chase him and tickle him, and most of all he needs me to be able to laugh with him. MS is stopping me being able to do those things, he needs me to be a whole mum to him, not just a pair of boobs that can’t do anything else. So that is how I have reached my decision to put my health first, because I can’t be a mum to him if I don’t.

Now, you’d think that was the hard bit, making the decision. Oh no, carrying it out is the hardest part by far. I have no idea how to stop breastfeeding, no idea at all. And when it comes down to it, on a day to day basis, seeing as that neither of us want to stop, it makes it pretty hard. I've read countless articles on weaning, and the loud and clear message is don’t stop cold turkey. Okay, so, now what? We've had limited success at cutting out daytime feeds, there are distractions;  spinning tops and spades and toast and the cat and the cat’s biscuits, and other things that factor highly in the world of a one year old. But night-time feeds are a whole other story, he’s never fallen asleep for the night without boob, he wakes up at night a lot and boob settles him right back down, it makes life easier for everyone. I have no idea where to start and it breaks my heart that I have to. He’s only ever drunk from a doidy cup, which is an open topped cup and therefore not practical at all for night. I've never been able to get him to use any other kind of cup or bottle. This evening however, he drunk his water through a straw, and very pleased he was too, and closed beaker with a straw spout and he sucked away on it excitedly in between mouthfuls of roast chicken. And so there was the little glimmer of the light at the end of the tunnel that I hadn't wanted to see. I could finally see a way of him at least being able to have a drink in the night that wasn't boob and without it waking him up fully by getting the inevitable doidy cup drenching. No big deal, just learning to use a straw, just another step in the journey. 

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.

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.

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.

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.

Tysabri - hope or fear?

I’ve been on Copaxone now for 11months, and in that time have had at least 2, if not 3, relapses – the same rate as I was having them pre-Copaxone. After pointing this out to the M.S nurse a couple of weeks ago, she said I needed to see the neurologist and booked me the appointment, which wasr yesterday. The M.S nurse had warned me that it would be likely that the next step to be considered would be Tysabri, or Natalizumab as it is also known. I had the usual neurological examinations which are becoming all too familiar now. Hop on one leg, walk in a straight line, touch my finger then your nose – I often wonder if it’s the same test used by the police to see if drivers are inebriated. I hope not because if I had that test they’d probably decide I was off my face. It annoys me how the neurologists never seem to comment on the results of these various tests. I had particularly wanted to know if my reflexes had ever come back after I lost the leg ones during my first relapse. Someone did point out to me that I could just ask for his findings, so this time I did ask how my reflexes were. He said “a bit frisky but not too bad at all”, so I’m still not really clear as I am not sure that one’s reflexes being frisky is a proper medical term!

Anyhow, once I was sat back on the chair, shoes and socks safely back on my feet, he got straight on to the business of discussing Tysabri. In order to be eligible for it, I need to have had two disabling relapses in one year that can also be seen on MRI scans. So I am having another MRI to check if it shows new activity since the last one. He explained that as long as it shows some changes I would be eligible, the lesions don’t have to be actually active at the time of the scan. So in an odd way I am now hoping for activity on the scan to show. It does seem a bit arse about face to be hoping for new damage to my myelin, but that’s the way it goes I guess. It’s funny, even after being told by the neurologist that my M.S does appear to be starting off aggressive, I still feel like I am making it all up. Part of me is still convinced none of it is real and they will do the scan and it will show nothing and everyone will doubt me and think it’s all in my head. I feel like I’ve suddenly been planted back in to limboland and a lot of what I am feeling is very similar to how I felt in the 6months following a diagnosis of Clinically Isolated Syndrome and waiting to be diagnosed with full M.S.

The discussion with the neurologist about Tysabri also meant the inevitable discussion about PML. That big grey blob looming on the horizon of hope that is Tysabri. I was given some information from the hospital about Tysabri, so instead of trying to explain PML in my own words, I shall refer to the leaflet.

“Progressive multifocal luekencephalopahty (PML) is a rare side effect of Tysabri. It is a rare brain infection caused by the JC virus. PML causes damage to the myelin sheath around the nerves in the central nervous system. It is an aggressive condition for which there is no treatment. PML is not always fatal, but can lead to death in as little as 6months.

The JC virus is commonly found in the general population and usually causes no symptoms or harm. However, if the immune system is weakened or changed with medication, the virus can lead to PML. We will take a blood test to find out if you have been exposed to the JC virus as this will indicate if you are at a lower or higher risk of developing PML.

If you have NOT been exposed to the JC virus, the risk is extremely low. There is only a theoretical risk of developing PML of 1 in 5000, based on the possibility of new infection in the future. About 2% of the general population are infected by the JC virus per year.

If you HAVE been exposed to the JC virus, the risk of developing PML is 1 in 2500 in the first 2 years of treatment. In the third year of treatment the risk increases to nearer 1 in 400. In the years after this, the risk may go down again but this will become clearer in the future”

I remember when I first got diagnosed and was reading up about Disease Modifying Drugs, I read about Tysabri and the PML risk and I remember thinking that I’d never want to take Tysabri. I never felt it would be worth that risk. I also remembering thinking “I never want to be in the position where I am offered Tysabri”. Now, I am in that position and my thinking has totally changed. I don’t see it as a choice at all, the risk of PML suddenly seems much smaller and all I can think about is getting on the drug and the possibility of actually going longer than 5months without relapsing. The thought that things could actually get better. That I could actually have more of a life, go for walks, and hold down a job. All of these are things that I can see losing all too soon if I don’t take Tysabri, and if I do, I have some hope for the future.

I have decided to stop the Copaxone straight away. The neurologist said he would rather I was on something but he could understand if I wanted to stop it as it doesn’t appear to be doing anything. I was finding it harder and harder to inject myself every day since this last relapse. It’s funny how your motivation can change so quickly. It’s like my total turn around on Tysabri. When I started the Copaxone I was so strict with it, setting my alarm to do it at the same time each day with not a jot of resentment, because the hope was, it was doing some good. Now that I feel like it is doing sweet f.a, the thought of doing it each morning is horrible. I am not usually squeamish with needles and have had no problems injecting for the first 10months or so, but as soon as I decided it wasn’t working, just the actual physical act of puncturing the skin with the needle was so hard to bring myself to do – and coming from an ex self-harmer, that is saying something! It was so nice this morning to get up, take only one tablet, have a coffee and not worry at all about finding a space amongst all the lumps to inject myself. I suddenly want everything Copaxone related gone, I want the syringes out my fridge and sharps bins out of sight.

My other reason for wanting to stop the Copaxone is what if it actually IS doing something? Okay I am still relapsing at the same rate as before I was on it, but what if I would’ve been relapsing even faster without it? As I’ve just had a relapse, I’m kind of breathing a sigh of relief and feeling a bit like I am in the clear for a few months. I know M.S doesn’t work like that, but it is too easy to see it that way. I think it is only natural for the mind to try and find an order and reason for something that is just so unreasonable and unpredictable.  M.S is, by nature, totally irrational but in order to cope with it, I find myself constantly trying to rationalise its behaviour and make sense of it all. Anyhow, I digress; my point was that if I stop the Copaxone now I will have a break without taking anything before [hopefully] starting the Tysabri. If I suddenly start relapsing at a quicker rate, it will suggest that perhaps the Copaxone WAS doing something. It then means I could hold Copaxone in higher esteem and it would be there as another option and hope if for any reason I can’t go on Tysabri or if I do and it doesn’t work. As much as Tysabri is a glimmer of hope it is also a shade of fear. It is pretty much the end of the line with DMDs as they currently stand. If it doesn’t work, what next? That is one of my biggest fears, probably bigger than the PML fear. I really don’t want to be in that position. So by stopping Copaxone now, one of two things can happen. I won’t relapse any quicker thus confirming Copaxone wasn’t working and Tysabri is the right decision and I will get a couple months off from taking it. Or, I will relapse again thus suggesting that Copaxone was doing something, and I’ll still be able to keep it as a possibility in reserve for the future, lessening the fear of if Tysabri doesn’t work. A win win situation right?!

So now, here I sit feeling rather like I’m on a similar track of where this roller coster ride began. Waiting for an MRI, waiting for the results, wondering if the scan will show anything or if it is all ‘me making a fuss’. As is all too common a feeling with M.S, waiting to see what will happen next.