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'.