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.