30 July 2009

I have struck gold. The cleaner has arrived and is fabulous. She admits to being a little OCD, which seems to me the perfect quality for a cleaner! At last my flat can be clean, I can hopefully keep it a bit tidier, and all will be so much better.

I confess that it feels strange, having someone cleaning my flat. I've never felt very comfortable having anyone doing that, but at the same time I don't have a choice now. It's simply too much for me to do. Before it was a case of I'd keep it manageable, do it when it looked a bit feral, and that was that. Typical bloke I suppose.

When the MS struck, curiously I wanted things to be cleaner. But I couldn't do it. Correction, can't do it. I decided to hoover, and it took me a day to get the hoover out and do the hall, a day to do the other two rooms. And that was all I could manage. It totally wiped me out. I just wanted to sleep and sleep. It's just so stupid. A little bit of exertion - and let's face it, putting the hoover round isn't exactly trekking to the north pole.

That was, and is, one of the biggest frustrations for me. Anything just takes too much effort, or at least more effort than I have energy for.

But for the moment, I have an angel in my flat, making it clean and sparkly.

29 July 2009

Today I feel energised. That might be a slight exaggeration, but it's there or there abouts. I feel the need to tidy my flat. Not a nesting instinct, since I can't be pregnant, but the impending arrival of some help. At last.

Yes, I'm finally getting help to clean my flat, so I need to have a tidy up. In the past, whenever someone has very kindly helped me clean or tidy (which has always been very kind) they have also tidied away a load of stuff that I am attached to. And then I end up having to rescue it before it makes its final trip to the bins.

This time I want to be proactive, not least because I have warning that the cleaner is coming. So time to at least try to protect the things that are precious to me. Yes, they may be junk, but if they're not in the way, and tidy, then what's the harm? We all get attached to things, feel a little less complete when they're gone.

Bugger, I'm tired now. Need to have a bit of a sleep, then I'll continue. Now where have I heard that before?

24 July 2009

It is amazing that however crap I think my life is, there is always someone worse off - facing bigger challenges, more uncertainty, greater disappointment. It is the wonder of the internet that it allows me to get in touch, and stay in touch, with so many people of disparate backgrounds and varied lives that no matter what trials and tribulations might present themselves, I can constantly be humbled.

I'm not going to go into specifics - that would be wrong, and intrusive into the lives of others - but suffice it to say that I consider myself very lucky. I have a wonderful supportive family who understand as much as anyone not living with MS can, wonderful friends who don't give a toss about the MS and will make allowances for my limitations, and most of all two awesome sons who give me all the unconditional love and help that I could ever wish for.

I suppose this means that today I am feeling very positive about things in general. Sure, life is uncertain, but in general I know what I know, I know what I don't know, and I guess that I also don't know that I don't know some things. That sounds appallingly like something a US general once said. Ah well. My point is that I am content with the things that I know, and the rest is so remote that I'm not going to worry about it.

Life is almost disturbingly stable. I said almost. Stability is never disturbing.

22 July 2009

Today, today, today. It has been a very good day.

Yesterday I was fitted with a foot/ankle orthosis, which basically means that the foot drop is much less on a problem. I can almost walk like a normal person, that's how good it is!

And I had an interview for a job, the rearranged one from last week. It went well, I got there ok and performed to the best of my ability.

All of which adds up to a very good day indeed.

16 July 2009 (II)

This has turned out to be one of the worst days for a long time. I had a job interview. I was excited about it.

I judged things wrong, of course. I forgot how long it takes me to get dressed in my suit. I allowed 45 minutes before I needed to leave - plenty of time I thought, given that I used to be able to get up and out for work in about 20 minutes. It wasn't enough. Not when I haver so much trouble with buttons, when showering and shaving takes so much longer when I'm trying not to fall over, when even putting my shoes on is a major exercise when my ankles are swollen with gravitational oedema.

So, it didn't start off well, I ended up leaving too late to catch the train I'd planned to get. No problem, there was another from another station, only a short drive away. And at least I can still drive. When I parked the car, I could barely walk - or more accurately drag my feet - to the station. But I persisted, figuring that sitting on the train for half an hour would do the trick - well, it usually does, when my legs get tired a bit of rest usually makes everything right.

How wrong could I be. When I got to London Bridge, I could barely drag myself the length of the platform, and then down the ramp. When I was nearly at the Underground, I knew the game was up. A very sweet man on the barrier saw me struggling and asked if I needed assistance. Who'd have believed in these days when we've ceased to be passengers and become customers that there would still exist a member of railway staff who gave a toss?

I declined his kind offer and struggled to the roadside of Tooley Street, where smoking is permitted. I lit up, and phoned my elder son to bail me out. I dropped my cigarette after a couple of drags. My fingers don't do too well at the best of times, and this wasn't the best of times. I gave up and dragged myself back into the station to wait for a train home. It took me so long to get onto the platform that the train pulled in as I was about half-way down. So when it finally pulled into my station, I had an unwelcome distance to drag myself. But when I finally got there, my boys were waiting for me. I am always pleased to see them, but never more than today.

They took care of me, made sure I got into my flat and made sure I had food and milk. Then they left me, as always respectful of my desire to be independent. Without them I don't know if I would have got home, or when.

16 July 2009

The mists continue to clear. I think I now understand why my legs get so tired, whilst being in as good condition as they've ever been.

It seems it's all to do with my balance. Because my balance is a bit shot to pieces, my leg muscles have to work much harder, in ways that they aren't designed to work, to keep me upright. So whilst legs only conventionally have to hold a person up, mine have to deal with something akin to me standing on the deck of a boat in a gentle swell.

The action of continually needing to adjust to support and correct my shifting balance must be giving them a constant workout. Which is pretty cool. All the effect of a leg press at the gym without the subscription or the sweaty locker room. The body is indeed an amazing machine. If only it could figure out how to repair itself and expel the MS, life would be just peachy.

But then that would perhaps be cheating; then I wouldn't be able to spend so much time wondering why and how and what if. And where would be the fun in that?

11 July 2009

It just occurred to me that I no longer feel frightened by the MS. A little uncertain for sure, but no longer scared.

MS is a part of me, there's nothing I can do about it, so there's little to be gained from being frightened. It is what it is. Within me, but not me, if you see what I mean.

That's not to say that I like it. I don't, not one little bit. I despise it for the things it has done to me, the way it has forced me to adapt, the relationships it has wrecked (with a little help from me, if I'm totally honest). But we seem to have reached an understanding. It leaves me alone and I tolerate its existence. A kind of medical détente. A cold war without the Berlin Wall.

And for as long as it keeps its side of the bargain, I'll continue to be content. Not happy - I look elsewhere for the happiness in my life - but content that this part at least is settled.

9 July 2009

In a reflective mood again. After a few email exchanges with friends, it just occurred to me that I've been stable (if that's the right term for someone whose balance is dodgy at best) now for about ten months. That's ten months with no relapses, no deterioration, nothing. My MS has become really boring!

Not that I'm complaining, far from it. Having had 18 months prior to Copaxone of gradual deterioration, it's nice to be in a state of non-flux. I guess I could moan about having had two years of uncertainty while the MS was being diagnosed and then not treated, but it is what it is. Only when I'd deteriorated enough could I get fixed. One of life's paradoxes, but that's just how it goes.

I'm just grateful that now, for the first time in ages, I can look at life with a degree of certainty.

8 July 2009

Today is a sad day.

Not for me. I'm as happy as a pig in whatsit. But for people I got to know quite well whilst taking part in a drug trial last year. One of them in particular has been fighting for the promised continued use of the drug after the trial finished.

The problem stems from the drug company, safely ensconced in Switzerland, using a professional bunch of guinea pig trainers who recruited and dosed us up and monitored us. Said guinea pig trainers made us all aware of the risks, made us the promises of the drug etc etc. But the drug company has now decided to can the drug and has instead licenced a drug from a US company which puts it at the forefront blah blah blah...

End result? The guinea pigs who took the risks and made the sacrifices get diddly squat. Now this doesn't bother me especially as I had a relapse a couple of weeks after the trial as a consequence of which I now stab myself daily and have been relapse-free since then. But there are those for whom self-injection isn't something they like doing, or the drugs don't work for them or whatever. I've got a therapy which seems to work for me. But I feel for those who haven't, who are getting worse, who had pinned their hopes on this drug.

Life isn't always fair, but it doesn't make it any less unpleasant when you experience it first-hand. I was a keen advocate of participating in drug trials. Now I'm not so sure.