Wednesday, 28 March 2012

Up In The Air

Last night I was thinking how that, at the moment, it really feels like everything in my life is coming together. This led me to think back to when did it fall apart to the point of needing to be put back together?

All the parts of my life had been thrown up in the air and were just there, floating about above me, banging in to each other, and just hovering with no particular order, rhyme, nor reason.

It's only on looking back now, with everything feeling like it has landed in to some kind of tangible shape, that I realise just how up in the air everything had been.

So when did that happen I started to think.

17th January 2010. I knew at the end of that year, that it had been a terrible twelve months, but I was still so in the midst of it all that I couldn't hold all of it together in one place.

On that date, I received the devastating and mind shattering news,  that a close friend has committed suicide. That is the first time I have written those words. She was my friend, and she took her own life. It still hurts and my eyes are prickled with the threat of tears as I write this now. I am sure I don't need to explain in any further detail, the emotional turmoil that followed in the massive shadow that is grief.

9th July 2010. Physical symptoms hit for the first time, in a big way and quite literally knocked me off my feet. I was given the life changing news that it might be M.S. That physical turmoil continued throughout the rest of the year, culminating in my diagnosis on 21st December.
As as result, the difficulties of 2010 did not, sadly, get left behind with a drunken chorus of Old Lang Syne, although not through want of trying!

2011 brought about a lot of changes and adjustments to life because of the M.S. I started a treatment (Copaxone), it didn't work. I moved house. I faced a redundancy and ill health retirement situation at work. I stopped doing the job I'd done for eight and a half years on 5th December, the same day that a family friend sadly lost his battle with M.S.

In two years, there had been two deaths, a life changing diagnosis, moving house and leaving my job. No wonder everything had felt up in the air for so long.

This year, 2012, I decided I needed some help in dealing with all of this, in order to stop the vicious cycle of thinking that I had gotten in to, before it spiralled in to my own self destruction.
I asked my doctor for help, perhaps a short course of CBT, I suggested. Sadly, a mental health history is akin to having a criminal record in such situations, and no help was available. As far as the NHS were concerned, here was someone with a history of mental health problems, but who was currently sane enough to be asking for help. Unfortunately funds do not stretch so far as to cover preventative measures.
Sink or swim time had come. I grabbed hold of the sides with both hands and started kicking fiercely, doing everything I could to be able to swim with the power of my own strength,
This is when I booked on to the mindfulness course, pursued ill health retirement (rather than redundancy); started a new treatment (Tysabri); began a numeracy course and applied for an Access [to Higher Education] course.
With all these things happening, my life is once again changing, but this time it is for the better.

The answer now as to where all this began, is glaringly obvious, but it is only now that it has all fallen in to place, that I can dare to look back and see just how difficult the last two years have been.

That was going to be the end of this post, right there. However, as I write this, I am sitting in a beer garden soaking up the sun and feeling full of hope and excitement for the future. I felt I had finished writing, put my iPod in and turned to face the sun.
The I realised, one massive part of my life is not mentioned in this post: The Boyfriend.
He isn't mentioned, and he should be. He isn't included in the above reflections because they were reflections on the bad in my life. However he should be mentioned now, because he has been there by my side, through all of it.
When we got together, in 2009, I was so ridiculously happy. I remember sitting on a bus and listening to 'One Day Like This' by Elbow, and just feeling so happy. The words reflected that happiness perfectly.
Since 2010 I have not listened to that song. I have heard it a few times in passing, but I have not really felt the words like I did on that bus in 2009.
Today, after writing most of this and listening to the iPod, I remembered that song. I put it on (repeat, of course) and for the first time in more than two years, I really felt the happiness again.

So, to The Boyfriend, if you read this, thank you for being there with me through the last two years and for still being here now. You make me just as happy as you did when we met, and here's to the next two years being focussed on us, just as the last two should have been.

I'll leave you with the lyrics of One Day Like This - by Elbow, as they really do sum up just how happy I feel right now, and how relieved I am to have shaken off the darkness that has been the last two years.

Drinking in the morning sun
Blinking in the morning sun
Shaking off the heavy one
Heavy like a loaded gun

What made me behave that way?
Using words I never say
I can only think it must be love
Oh, anyway, it's looking like a beautiful day

Someone tell me how I feel
It's silly wrong but vivid right
Oh, kiss me like the final meal
Yeah, kiss me like we die tonight

Cause holy cow, I love your eyes
And only now I see the light
Yeah, lying with me half-awake
Oh, anyway, it's looking like a beautiful day

When my face is chamois-creased
If you think I'll wink, I did
Laugh politely at repeats
Yeah, kiss me when my lips are thin

Cause holy cow, I love your eyes
And only now I see you like
Yeah, lying with me half-awake
Stumbling over what to say
Well, anyway, it's looking like a beautiful day

So throw those curtains wide!
One day like this a year'd see me right! 

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.

Saturday, 24 March 2012

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.

Wednesday, 21 March 2012

New Life Begins Here.

I had my interview for an Access Course yesterday, that I want to start in September. I've wanted to go to Uni for years but it's always seemed such an overwhelming goal, to give up my job and bite that bullet. Now I've lost that job anyway. I'd been browsing through jobs and all the ones I could do with my limited qualifications were boring boring boring. I really had to think to myself 'is this all I want from life?' 
The answer was no.
The next question was 'how do I get more?'
The answer was further studying. 

So I started seriously looking in to ways to do this, and an Access course seemed the best route considering my background with education. (Those who've read my Spartacus blog post will know I left school at 14 with no qualifications whatsoever.)

Luckily, in 2001, I went to college and did an English GCSE. I've never 'used' it since, in that having that alone as a GCSE has never come in to play. Now, it does. For the Access course you need to already have either maths or english GCSE. I've was initially under the impression I would need to do maths alongside the access course. My maths is soooo bad, no, let me rephrase, my numeracy is sooo bad. I decided to undertake a numeracy course under the 'skills for life' scheme to prepare for the seemingly unavoidable maths GCSE. I had an assessment a few weeks ago and have done two weeks of the course (is just one evening a week). 
Having now researched the university courses I want to do, none of them require it. 
So the best news of the day, I don't need to do a maths GCSE at the same time as the access course!! Wooo! 
The second best news of the day, is I got accepted on to the access course. 

The level of help available at the college is simply astounding. When I turned up for the interview, there were dozens of people waiting for various 'welcome events' in a corridor, no seats of course. I managed to find a small window sill to perch on and rested my chin on my stick.
A lady then came along and said to about 5 of us who were waiting for the Access course interviews to follow her. We went down a few corridors and I was trailing behind, I was about to loose them as they turned yet another corner when this other woman, who I'd never seen before, came up to me and said 'Are you Sarah?' Wow, the relief that came over me at that point.
She stayed with me throughout the interview, literacy assessments and everything. She is going to sort out a scribe to take notes for my during lessons, a carparking space wherever I need it that is closest to where I am having classes that day, a key to the lifts, longer time to sit exams if required, a padded and high backed chair. 
It was all done with such ease and no hint of patronising. I didn't have to ask for any of it (in fact I was resisting some of, particularly the scribe) but I am simply overwhelmed by the support available. I don't want to appear different to the other students by having a support worker sat with me in classes, but they soon allayed my fears about that. The said the support worker would just be like part of the class, taking part in debates etc. In fact the support worker seemed so keen to sit in on this course she was chomping at the bit to have me accept her help! 

I decided to put aside my memories of school, of being bullied because I had a learning support assistant attend every lesson with me. That was for entirely different reasons though (ones I didn't agree with at the time and still don't) and with an entirely different sent of people. A group of 30+ 14/15yr olds are going to be generally much less accepting than a smaller group of mature students. 
So I accepted all the help they offered. I am still not sure on a scribe, but having done a short written test before the interview my arm was very weak and painful, so I thought maybe it wouldn't be such a bad idea.

I then did the literacy test and flew through that, beating myself for getting one wrong, only to be told it was a very good score, so that was a confidence boost.

There is however, one blot on the landscape, how the hell am I going to pay for all this. Tuition fees aren't a problem, (there is enough help available for them) but how will I pay my bills? The course is technically full time (16hrs a week at college, 16hrs at home) and I've been told that DWP often turn one down for ESA if you are doing what the college label a full time course. 
Money schomey. I WILL do this. I CAN do this. 

And why is my life going in this direction? Because of MS. Every cloud and all that. 

Wednesday, 14 March 2012

Breathe through THIS? Are you SERIOUS?!

I don't know why I've come to a bit of a block with my blog. I need to get over it and so have just opened a new post and started typing with no intent other than posting a post.

So, what's been happening? Mindfulness is still going well, although I've not been practising it as much as I should, it is still a really useful tool for dealing with anything in life not just pain. I've been finding myself much happier just being, not having the constant need to block everything out. I never used to be happy sitting in silence, now I am quite comfortable to sit, soberly, with no music or television on and just exist and inhabit my body and mind as fully as I can. To start with when doing the Mindfulness, I really struggled with the concept of 'moving towards' the unpleasant. Surely not I thought? How on earth can concentrating on something like pain make it any better? For a couple of weeks I really couldn't get my head around this idea. Then it sort of fell in to place. By blocking out the unpleasant, we also inadvertently block out the pleasant. If I'm constantly trying to ignore a pain in my shoulders I am not just blocking out the pain in my shoulders but numbing myself to all bodily experiences. There is also the realisation that all pain is fluid, ever changing. When blocking out pain, we can't actually totally block it out as we are always aware that this pain exists. For example recently I've had a really bad neck that has been very painful indeed. By moving towards this pain I was constantly aware of when it changed and as such the times when it was better. Even though it was one of the worst pains I've experienced there were still moments where there was some relief from it and this in itself was a very pleasant experience. By trying to ignore the pain I would've, got up thinking 'I am in pain today' and then done everything I could to ignore the pain. By moving towards the pain, there were times when I was, for example, laying on the sofa and I realised the pain level had actually dropped quite significantly. So rather than it being 'Today I Hurt' it was 'Today I Hurt and......' Pain doesn't have to be solid, if we focus on it we soon realise the even smallest fluctuations in it.
 The same goes for mental pain, if I'm feeling like a bout of depression is coming on I usually try and resist it, yet by doing this I am also blocking out any nice feelings I might be having at the same time and also not looking at the reason for why the depression might be appearing. If I move towards the fact I'm not feeling so chipper, sometimes I can find a reason for it and as such work on that reason or even just by having found a reason begin to feel better. I think with depression I get so scared of NOT finding a reason and it being clinical (which in my experience is harder to move through) that I do everything I can not to think about it, but more often than not this just prolongs it with The Beast grumbling away in the back ground and I'm aware of its threat hanging over me. If I face up to it as soon as it appears, it no longer seems like The Beast, more of a small ant or something - it can be dealt with, doesn't have to be feared and also has its uses.

I haven't had to apply this thinking in a real depression situation as yet, and I am sure that when (if?!) I do, it will be much easier said that done. Let me tell you, with that neck pain it was very very difficult to breath through it and move towards it. There were points when I was thinking "f**k this hippy crap, this f**king hurts go away go away go AWAY" and I am sure I will have times where I have the same response to mental pain. Yet I can already see and feel the benefits of changing my way of thinking about myself, about others and about the world, so I shall continue to do this and practise it and hopefully get better at it with time.