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.

Tuesday, 8 May 2012


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.

Tuesday, 1 May 2012

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 ;)