27 June 2009

I'm an addict. It's sort of true at least. I'm addicted to 'House'.

I watched it avidly when it was on TV, and now I'm re-watching it. I was trying to figure out why and came to this conclusion: I identify with House.

I like his attitude to the world. I love the way he refers to himself as a 'cripple' - a term I love to use about myself that seems to alarm everyone that hears it. What is it about a simple, descriptive, word that causes people to recoil in horror? According to the OED: cripple n. archaic or offensive, a person who is unable to walk or move properly through disability or injury. What could be more perfect? It describes my state, in a clear and unequivocal way.

Why should is be any different from gay people reclaiming terms that have been deemed offensive, so that they are perfectly acceptable when used by the 'in-crowd' though they remain offensive when used by others? It strikes me as entirely reasonable, and I intend to continue.

I am a cripple, not entirely happy with crippledom, but content.

By the way, I also like the way House gets into arguments with sick people by playing a kind of disability Top Trumps, where he continually outbids them. I don't feel the need to do this, but I admire him for it. Yes, I am a happy cripple, and I don't care who knows it!

21 June 2009

It's been a strange week. I've done more this week than for a very long time - more walking, more driving, and had less rest than normal. But today I had more energy. I was out driving for nearly six hours, with only minimal rest. Sure I felt tired whilst driving, my legs felt wasted as usual. But my recovery was so much better.

Now, I guess I could put it down to a number of things: I was happier this week than usual; I was more active than usual; I had little time to reflect on things, so depression was less of an issue. Perhaps it was none of these, or all of them, or a combination of two or more. I'm not about to try to conduct some kind of scientific experiment on myself to find out, even if it were possible, but nor am I going to dismiss it.

Being happy and positive is a good thing. I have laid some of my demons to rest too, which can only be positive. Being active is definitely a good thing, as is getting out and about.

The lift in the building was finally fixed on Friday, which was a major plus, but I think perhaps I'll try using the stairs sometimes too. It can't do any harm, and if it does some good then what the hell!

I've no idea what it all means, but I have to admit that I'm feeling more positive than I have in a long time. Life is good - not just in the way that I so often say it, as a way of avoiding admitting that life with MS is pretty shitty (which it is), but in the truest sense.

14 June 2009

I think too much. That's the conclusion I came to, whilst doing the washing up just now. I was mulling over why it is that I bother so much about things, and why I get my knickers in a knot about that over which I have no control.

Obviously to an extent it's a defence mechanism: should I cross the road or wait a bit longer; do I really believe that an email offer can solve my penile deficiency (and if so, do I really want to make her scream); is that one day out-of-date piece of fish safe to eat.

But I think about other things far too much, when I really can't have any influence over them. All it does is tie me up in knots. I think about why MS does this or that, why (no matter how good a condition my muscles are in) my legs get ridiculously tired ridiculously quickly. ~Things that I can't understand bother me. I know the basic physiological reasons. They've been explained to me by numerous professionals. The nerve messages take longer than they should to get from A to B, blah blah blah. Ok, so that explains why I can't run, why my balance is shot to pieces, why I trip over the slightest uneven surface. But they don't explain why I have lost the ability to push myself, why I have to just give up when fatigue hits me, why the apparently boundless untapped resource of strength in my muscles is no longer available to me.

I know that many things that I want to understand are beyond my reach, and will probably remain so, but it doesn't stop me thinking, or wanting to understand. But I have to accept that some things are what they are, and whatever I want is irrelevant.

13 June 2009

I have been thinking. Yes I know, it's hardly rocket science, and not something that's a rare occurence for me, but this time I think it's been more productive.

For some time it's been bothering me, the relationship thing, why they haven't worked for me and so on. Well I think (which is always a slightly dangerous thing to do) that I have figured it out - with the help of a friend. Talking things through always seems to clear the mist, and the more I talk, the more openly I talk, and the more I listen, the more the mist seems to fade and the clearer things become.

I'm probably waffling; it has been my way for far too long, so perhaps it's time to cut to the chase. The thing is, I have always thought that people are open and honest and direct in the way they relate to me. Perhaps that's born of my belief in the fundamental 'goodness' of everyone, I don't know. Anyway, I've realised that when push comes to shove, not everyone can be open. It's human nature perhaps not to want to talk frankly when things are falling apart, even if you do so in the good times - and it's a big assumption that even that happens.

So, that leaves me open to confusion. I always want to believe that the feelings and candour that are so often clearly there in the early stages of a relationship (after all, why go into a relationship if you don't feel that you understand a person?) may just switch off, in the same way that the love and affection switch off.

In my last two relationships I have been told of a desire to remain friends, even that one of them told me she was still friends with most of her exes. On reflection, this has to be complete bunk. If you experience the intensity of feeling implict in a strong relationship, then how can that just morph into the more casual connection of a friendship? Combined with the lack of candour that seems typical in a break-up, it then makes no sense that anything can remain afterwards. Perhaps my idealism is at fault; believing that the love that is expressed in a relationship can form a basis for something after the break-up is a recipe for disaster.

So, I've reached a conclusion. Not everyone is open and honest and direct all the time. I can't expect that others will be as comfortable as I am at expressing their feelings. If I cling to my belief in the basic, fundamental goodness and honesty in people, then I am setting myself up to be disappointed, confused and hurt.

It all comes down to pendulum swings. The higher the highs, then the lower the lows. Everyone wants to protect themselves, and the way to do that is to just shut yourself off. Painful though it has been, that it the reality, and only by accepting that can I protect myself, and move on.

So, it's taken some time, but I genuinely believe that I have now found peace, I have found the understanding that has been so elusive. And from that flows contentment. And I feel very contented now.

11 June 2009

This morning counts as the beginning of a good day I think. I decided that I would use a bit of my energy reserves to dispatch the 'Robinson Crusoe' look; I had a shave. It seems stupid to be thinking of such a basic thing in terms of using up energy, but that is life today.

So now I am spruce and ready to present myself to the world. I don't have anywhere special to go - well, taking my younger son to school is special, to me, but not in the grand scheme of things. I retained the 'soul patch' (one of the more polite euphemisms) mainly because it seems to bother so many people! My kids look at it with disdain, it has to disappear for job interviews (companies are so conservative!), but I like it. And there aren't that many ways that I can express my anarchic side these days!

So I am looking forward to the rest of the day.

10 June 2009

I've been wondering why I've been so tired lately and I just realised why. For the last week the lift in my block has been out of order. Some problem with the brake linings, apparently.

Now I used to avoid using the lift at all. Not through any fear of small spaces, or fear of a lift that appears well past its 'sell by date'. Simply that it was better - healthier - to use the stairs. That, however, was pre-MS. And substantially since my diagnosis. After all I'm only on the first floor, and one of the physios advised me "use it or lose it", which I have taken very seriously.

But more recently I've been taking the lift as a matter of course, because stairs are a struggle. I can deal with them when I need to - in other people's houses for instance. But it's less of a drain, less of a struggle, not to have to.

When I was recently assessed by social services to find out my needs, I told them that without the lift I'm a virtual prisoner in my flat. This is no exaggeration. Whilst I avoid going out unless I need to, now even going out when I need to has become something to be avoided. I now consider whether I *really* need to.

This morning I have an appointment with the physio, so I really, really need to go out. I know the lift won't be working, since it wasn't working last night when I came home. So I will gird my loins and face the challenge of a single flight of stairs. It makes me angry that something so simple has become an Everest-like challenge (ok, I'm given to hyperbole, but you get the idea). I'm not sure who or what I'm angry with: the MS for making it hard; the lift for going wrong; the engineer for not fixing it. But whatever, life is just tha little bit harder than it needs to be at the moment.

7 June 2009

Just when you think everything is going so well...

It seems there is a limit to what the Gabepentin will do. Starting on 100mg, then when that didn't do it any more, 200mg, then when that didn't work, 300mg. Now it seems that is no longer working. Woke up a couple of times last night with pain all down the side I was laying on, from my shoulder to my thigh. Maybe I need to try sleeping on my back. Not normal for me, but perhaps that's what I need to do. I guess it's still a minor issue in my life, but it's still a bitch.

4 June 2009

A strange day. It feels like things are finally falling into place for me and yet I still feel unsettled. Like I'm missing something.

The benefits situation seems to be getting sorted out, the MS is (touch wood) stable, and I'm thinking about dating again. Everything should be peachy.

I've had some longish conversation recently that have helped me see things more clearly. Things like I don't need to understand the reasons for the break up of my last relationship. Not that it doesn't matter - it does. But it makes no difference why it happened. Maybe it was because of the mistakes I made, maybe it was because of the MS, maybe it just went stale. It could be any or all of these, or something else. But it doesn't matter.

I got hung up on the idea that if I dont understand the reasons for past failures then I am destined to repeat them. And there's a lot of truth in that. But it's also true that I know where I made mistakes. The MS is what it is. If the relationship went stale, that's just how it was. Mistakes that I made, I understand and can avoid in future. The other things, I can do nothing about, so the next person (or the one after that) will have to be someone who wants me for me, doesn't care about the MS (and I mean really doesn't care, rather than saying one thing and meaning it with fingers crossed) and is prepared to put up with the ebbs and flows of life with me.

I know it was probably optimistic of me to say that I didn;t want to be treated like an invalid. I didn't. I don't. Even if I end up in a wheelchair pissing down a tube and shitting myself without warning, I still don't want to be treated like an invalid. What I want, what I need, is for someone to understand that, but to know that what I want and what i need are two different things. That I'm just a man, and it's not easy for me to accept that I can't do the things I want to do. Hell, that's not being a man, it's just being a human being.

I need somebody who understands that I'm not a possessive or jealous person. That I dont feel the need to be babied, or included in everything, every second of the day. That I am quite comfortable being in a relationship with someone who needs time to themselves, who will go out with her friends, who will go shopping or walking in the hills of shooting rapids without me.

I know this because I know myself, better than ever. I know that having time apart can be just as important as time together.