The black hole...

I can’t organise myself. Fact. I don’t know why. Well I think I do, I never used to be like this, it just keeps getting worse. My consultant says that it is down to the fact that I have a stressful job, MS and a baby, he doesn’t seem to think that it’s necessarily getting worse. But it is.

I am so organised at work, I have to do lists that are very organised and concise. I don’t have them sprayed around on post it notes so that I am overwhelmed. In meetings I mark very clearly what actions I have to do and by when, but that’s where it ends.  I don’t know why, neurological reasons or not, but I just don’t do them, I don’t even look at my actions or to do list? Maybe I have a legion in a place that is my organisation system? I know that in some very unexplainable way, I just cannot remember directions, at all. Not even “down the corridor and second door on the right”! It took 3 weeks of sat nav to remember how to get to my new place of work. It was off the motorway, left at the first roundabout, straight over the second, left at the third and right at the fourth. Three weeks for that!?? My brain obviously has a place where it wants to store this information, but it can’t. Rather than finding another place to put this crucial information, it simply dumps it in what is now a black hole. Well this seems to be true with organisation and remembering to do tasks, remembering to remember to do the day to day. Unless it’s really routine, like brushing my teeth, I need a calendar reminder on my phone to remember to do it and that’s only any good if I remember to do it after I have seen the reminder!
This is a problem, a big problem with my job and I constantly battle this day to day, constantly wondering what I have forgotten, what I have done wrong, when will I get caught for not doing something I should have or said I would. It’s soul destroying and more tiring than I care to know. Always on edge when people talk to me and when they ask if I’ve do this or that. On Monday morning, I fear when people ask what I did at the weekend, I just don’t know. I often look a fool and I’ve found my way to get round that. Ive come up with stock answers that I can use and that generally gets me through without embarrassment, unless of course I am with someone that was with me on Saturday or Sunday! Why can I remember stock answers and not what I did? Is that a different part of my brain that isn’t affected? Can that really happen? Is this the MS? I don’t know, all I know is that I’ve seen my brain scan and it looks like a Swiss cheese, of scars and legions, from a picture in the 1800s in black and white!!

Either way, I can manage that, it’s just a job and people get over it. Whether they know I have MS or not, it makes no difference. If you have MS, you get it, if you don’t, you just think that it’s a bit odd but normal, but what they don’t feel is the hurt and embarrassment.

My biggest issue is when it encroaches on family. I have an amazing family, I love my little family with all my heart. My wife is incredible and so outwardly supportive of me. She gets me and gets what I’m going through. She’s done research into MS and does all that she can to understand and empathise.  The problem comes when my organisation affects my little 20 month old daughter.

I work long hours and don’t see her during the day. If I’m lucky, I see her before she goes to bed and I’m very lucky to have all day Saturday with her, it’s just amazing! But what really kicks me is that my missing organisation is beginning to encroach on family life. I can organise her just fine and if we go out, I generally have enough stuff that all is good, nappies, food, spare clothes etc. This is organised in a way that I know how to do and can remember and preschedule, just like brushing my teeth. The issue is bigger than that. I’m going to work tomorrow and I don’t know where my daughter is going to be! My wife juggles an extremely challenging occupation where by she tutors and does supply work at various schools, constantly juggling where she has to be, by when and most importantly what she needs. I do not envy that task. In fact, I don’t know. I don’t know any of these details about my daughter’s day, well, snippets at best unless I write it down. But do you know what gets me? All I have to do is ask. Ask my wife where my daughter will be tomorrow, what did we organise, what can I do to help, just to ask about her day. But I don’t. I don’t know why, but I don’t. It’s not because I don’t care, oh my god I really do. I just don’t. Maybe I do ask? Sometimes I get told on the 4th time of asking that I’ve already been told what the plan is for the morning before nursery, where she is going, who she will be with, but I just don’t remember. The saddest thing happened this evening and this is what prompted me to write this blog. My wife asked me to organise her lunch for the morning and get her ready before I went to work, a perfectly valid and normal request, after all, we are both working tomorrow. The sad part is that I couldn’t even say what she was doing tomorrow, I didn’t know where she was going to be and when. The worst thing, I didn’t even know what she ate for lunch. What?? How can I not know that? That’s routine right? Like brushing teeth? I should know that, I can do that! No, not the case.
Her lunch routine seems to be constantly developing. The amount, the content, the timing. It’s different depending on whether or not the food can be cooked or if it has to be cold in a lunch box. It’s a minefield of options. It’s scary. It’s ever changing. It’s fallen into one of the black holes, my brain just cannot store it. I wish could explain, but I can’t. It’s by far the most frustrating thing. I can fumble through my day and I learn to live with the feeling and thought “what have I forgotten to do today” what ball have I dropped”, but when it affects my family, that hurts.
The worst bit of all is that I don’t even remember to ask the important questions. Why dont I ask? Why dont I ask my wife what my daughter is doing for childcare tomorrow? Why don’t I ask what food she is now eating at lunch? Why don’t I know it without asking?? Why do I even have to remember to ask, I should do that anyway? Shouldn’t I? That’s normal, after all I used to remember. That is right isn’t it?
I wish I knew the answer to this, I wish I could explain it and understand. I often think to myself, if only I had a switch and if a pressed it, you would feel what I feel. Feel the worry that I feel minute by minute, that I have forgotten something, missed something, messed something up, just for 1 second and then you might get it. But I can’t and it’s not their battle to fight, it’s mine and do you know what, I’m winning!! I’m getting there!
I have a loving family, a beautiful and amazing wife and the most gorgeous and loving little girl. I really couldn’t ask for more. MS does not define me, I do. I have my issues, my battles, but I have my family, I have my experiences, I have my life and I love it and live as best I can given the circumstances. Yeah it’s tough, but it’s worth it. Turns out, Swiss cheese brain or not, I am a lucky man!

Dear MS...

A while back I was asked to write a letter to my MS to say, hi!  Well really, it was to say exactly what I thought of it.

This was a wierd request, one that I thought I would never have got had I not been asked to do it by my therapist.  She asked me one day, that if I could bring myself to do it, would I write a letter to my MS to say exactly how I was feeling about it being in my life? Well I thought that this was going to be a bit hard and if I'm being honest a bit weird! The thought of sitting there writing a letter to something that doesn't really exist seemed really weird...or did it?  Whilst my MS isn't real in the tangible sense, it is real to me, every day!  She said to me that it was a letter in which I wasn't to hold back, no matter how aggressive.  Well, aggressive it was!!  

My letter really didn't hold back at all, everything that I thought about my MS was there to see, plain as sight in all its glory.  I said everything that I ever wanted to say to it, all the way from picking me as its prey, to its relentless attack on my body and the emotional strain that lies heavy on mind every single day.  To say that I was angry was an understatement and the way in which I wrote it most certainly reflected that!!

So off I went to my next appointment with the counsellor, letter in hand, and she sat quietly reading the letter.  Her comment, once finishing the letter was, very calmly, 'well that was an angry letter'.  No shit!!  We spoke at some length about the letter and other thoughts that were floating around at that time throughout the session and any issues related to it before reaching the end.  Her finishing comment was 'why don't you write another letter this week?'.  Well I thought that was a ridiculous request to make! Why would I write another letter having written one already?? Is she mad? Is her memory worse than mine? Surely that's not possible!!  So off I went, thinking is she for real, or just crazy?

Well, a week later, there I am say writing yet another letter to MS, another rant at this unwelcome intruder in my life...well, so I thought.  My letter started off really quite friendly:

'Dear MS,

Sorry for my tone in my last communication, I was not thinking with a straight mind.  The first thing that I would like to say is thank you...'

THANK YOU??? What was I saying?! Well it turns out, I was speaking the truth! The truth is that I hadn't really spoken to anyone properly about my thoughts around my MS and that they were just building up.  Who better to vent at than my MS itself? In doing so, I had found a vehicle to accept a little bit more the strain that it had inflicted on myself both physically and mentally.  I had now written a letter in which I was thanking MS for showing me the strength that I have inside, for the friends that I have around me, for the supportive family that I have, but most importantly, the new outlook that I have on life, to have a life well lived!

What was going on?? I showed the letter to my counsellor and she said that by writing the first letter, I could finally say to MS just how it made me feel, no matter how angry I was. In doing so, I could get a tiny bit of closure, just enough that in my second letter a week later, I could begin to appreciate how it has actually brought some significant positive changes to my life.  Because of my new outlook, I am much more positive about my future and I am facing it with a much stronger 'live for the day' attitude which has made me appreciate more my job, my friends, my family and of course, most importantly, my amazing partner.

Who would have thought that 20 minutes writing a couple of letters to what I thought was a subject that I didn't want to talk about could bring me this much closure!  I didn't appreciate just how little I had actually been able to get off my mind until I wrote that first letter - it wasn't pretty, but it was most definitely the vent that I had been missing over the last 4 years...who would have thought?

Tysabri number 8, plug me in!

I promised when I started this blog that I would track the progress of my Tysabri so that those of you who are considering the benefits of it, would have another view point as to what to expect so here it is!

I am due on Thursday for my 8th Tysabri infusion.  In terms of actually taking the drugs, it is pretty routine for me now and is just another part of the day.  The infusion of tysabri still takes an hour, but the saline flush is now down to half an hour now, so it only takes a couple of hours max in total once you factor in parking, blood test, blood pressure, cannulation and de-cannulation after.  The only negative issue now is the ridiculously uncomfortable seating - i sometimes wonder if half of the pins and needles I have are from those blummin' seats rather than MS!!

I used to find it a bit squeamish with the cannulation process and the thought of it in my arm, but now i'm good with it - I even managed to build up to watching it go in last time!  The other MSers in the room with me are really good and it is so nice to be able to talk with other people that are going through exactly the same thing as me, and to see the funny side of all of the symptoms - I dont feel so lazy any more, especially when it comes to the amount of time I spend veging on the sofa and sleeping!

But what about the result, is it working?  Well, its hard to say, because what is 'working'?  It was sold to me as a drug that will help reduce the number of relapses and some of you guys on twitter said that it actually improved the MS.  Well I can say that I have not had any major relapses, so in that respect, it is hopefully doing it's job.  I still feel very tired after the infusion for about 3 hours, but after that I am fine and I even feel fine the morning after, where as when I started, I was out of action the next day.  I definitely have more energy and I would say that my legs are a bit better than before the treatment.

So all in all it's been a really positive step in choosing to take Tysabri and for me, 8 months down the line, the reward and its potential definitely outweighs the risk. If anything, it's just brilliant to have 2 hours in the month where i'm plugged in and cant possibly do anything and so dont feel guilty about being 'lazy' !! :-)

Welcome to Tysabri!

I wanted to write this post because when I was first told that I was having Tysabri, a lot went through my mind and I wanted to share my experience with anyone out there going through the same 1st dose worries.

When I first got told that I would be given Tysabri instead of Rebif, I was over the moon.  I remember saying to the nurse on the end of the phone that she had made my year!  This was a bad thing to say in front of my work colleagues that dont know about my MS because it of course had prompted questions.  When they asked, I just said that it was medical news about a test and all is good, or something like that, and of course they thought it was something like my wife was pregnant!!
The reason that it was the best thing I had heard all year was because I was told that due to the postcode lottery, I wouldn't be able to have infusions until space free'd up in the ward - this could have been 2 years I was told!  Fortunately for me and many others, a new clinic was opened due to pressure from the consultants, a nurse was employed and we were in!

My First infusion:
The first dose was the worrying one.  After having the risks of PML rammed down my throat for half an hour, I was about to sit with a drip in my arm for 2 hours putting something in me and I had no idea what it would do to me.  The night before was the worst, I didn't get much sleep and I was up all night thinking the dreaded 'what if?'.  Next morning came and off to hospital I went with my wife.  The nurses were lovely, very supportive and the cannula went in as if my arm was anaesthetised, didn't feel a thing.  Then the Tysabri started...5 minutes, felt fine...15 minutes, felt fine...60 minutes and I still felt fine!  I was starting to question if this was some kind of placebo and just water!  The hour passed quick and I was swapped onto saline to flush through for an hour - the only bad thing was the seat, it was so uncomfortable!  My advise, take a pillow just in case.
Leaving the hospital, I was thinking "well that was easy" and it was.  Sat in the car with my wife driving and I had the only side effect that I have had for the last 3 doses - I fell asleep - for 2 hours in total.  Now given all of my worries, this is not bad!
The next day proved to be a slow one, but no major difference in fatigue overall.  As my doses have gone on, 3 in total, all that has changed fatigue wise is that I am tired for longer - I can now feel it for 2 days after, but after that I am good, in fact better than before, I think that I can remember things more now and my mobility is slowly improving, result!

They tell me that it takes up to 8 infusions to feel the real difference and that can only give me optimism!  If you are awaiting your first dose and you have the same worries that I had then don't panic, the worst thing is the cannulation, but the nurses are great and it will be alright.

Tysabri is the best thing out there for us and we have to embrace it, PML and all - Here's to the next dose!!

So it finally happened after all...

They said when it all got confirmed that I might find it easier if I set up a blog.  They said it would give me a forum to share my story but importantly to help me remember what is going on!  I found the blogs that I have read very helpful in dealing with the rollercoster that is MS, so thank you all!

As I sit here now hiding from my old best friend, the sun, I can be quite grateful that I now have 6 weeks in which time I can recuperate after the hardest term I have ever taught and give my body a chance to put all the weight back on that I was trying to loose for that all important 'summer figure' or as I keep telling my friends, the 'mankinni body'!

It was as a teenager that I was first aware of the hereditary link with MS, probably not the best source, but well done Susan in 'Neighbours' for pointing that one out!  I now know that it is very unlikely to be passed on, but with my Auntie having had MS and my Mother having SPMS, I had my concerns. Watching the journey that my mum took from being invincible to wheelchair bound wasn't easy, but the one thing that I have learnt is that she is the strongest person I know and probably ever meet.

It was in 2007 during a hot build up to the summer and having drunk far too much the night before (pretending that I was still at uni!) that I woke up with the mandatory splitting head and wobbly legs, but this time it was different...I couldn't see properly out of one eye!  Now I know that I probably did get blind drunk that night, but not literally!  In a panic, I booked an opticians appointment, but he had no idea what was wrong and I felt that he almost didn't believe that there was a massive dark spot in my vision.  In seeing the doctor, he sent me to an ophthalmologist who confirmed after many odd tests (i'll come back to them another time -  I loved running around the hospital waiting room with electrodes stuck to my head!) that it was retrobulbar neuritis -  a classic precursor to MS :-(

So off I went and told the Mrs, which was difficult as she had seen my mum progress over the previous 5 years and then of course I told my mum and dad - that was hard.  In true parent fashion, they were positive that it would never develop and it is with regret that it eventually did.

The next 5 years was a frenzy of over analysing every odd feeling that I had outside of the ordinary and then trying to convince myself that it wasn't a symptom, it was normal, my memory wasn't getting worse, it was just age!  It was in October of 2012, however, that I eventually had to admit defeat and see a neurologist when I got the weirdest feeling that someone was pouring warm water on my leg when I looked down and that a colony of ants suddenly took residence all over my hand!  So I guess it turns out that all those odd feelings weren't normal, they were symptoms after all, boooo!  When I spoke to my parent's about it, my dad summed it up the best.."Oh sh*t", exactly what I was thinking!

So there it is, my journey to this point in brief.  Don't get me wrong, this really is a rollercoster.  For every down there has to be some massive ups, along with plenty of mini victories - one of which for me recently is the prescribing of Tysabri, something that I have been very lucky to be offered after some very ineffective alternatives.