Tuesday, 26 August 2014

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 1st 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. 

Tuesday, 14 May 2013

Survey for people with RRMS

RRMS Survey

I've been keeping up to date with this blog as I've been busy doing an Access to Higher Education course, which is now coming to an end!
As part of the course I need to do a research project for Sociology and my chosen subject is the impact of RRMS on identity.
If anyone stumbles across this and has a spare 10-15mins to fill it out I'd be eternally grateful!

Sunday, 14 October 2012

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.

Tuesday, 14 August 2012

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.


Thursday, 9 August 2012

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.

Thursday, 2 August 2012

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'.


Thursday, 31 May 2012

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.