30 March 2013

Just what I need. The other week Holby City featured a man with MS and this evening Casualty had one. I know it should be a good thing - raising awareness and all that - but with MS being so individual and the superficial way in which TV drama deals with these things all it shows is a tiny glimpse of what is a vastly varied disease..

A little knowledge can be worse than ignorance.

26 March 2013

What a day. I thought it was going so well - aside from the usual bunch of things washing round in my head.

I discovered that, without realising it, I have just made the most deep and meaningful explanation of how I feel. To my ex-wife. Permit me to explain.

I have helped her with her Uni work on and off. I have, I suppose, been a sounding board. But this time her assignment was about "The Life Course", and interaction with health and social care. She asked if I minded her writing about me. So the past couple of days I have been talking about myself.

Generally I don't talk about me, or at least not about the real me because I write it here and send it off into the ether. That is my catharsis.

When I talk about myself it tends not to last long, as I watch people's eyes glaze over. Plus I'm always aware that "the definition of a bore is when someone asks how he is, he tells them". But what I say is always truthful, sometimes to my detriment.

This evening I discovered that what I was telling my ex was more than she expected and maybe more than she was prepared for. She hasn't as far as I know ever read this diary. She could have. I've offered to give her the URL. But now she has heard it from the source. Edited highlights, of course, but raw naked truth. My truth, told my way.

23 March 2013

Who gives a fuck?

It's rhetorical.

But really.  Who would care?  People drop out of sight all the time, and who notices?

22 March 2013

I hate the way I feel. One minute on a high the next with no idea where my life is headed or if it has any point. I think it's only my weakness that keeps me going.

If I knew what the point of it was then perhaps I could figure it out. But I can't.

What is the point of life with no purpose? (Or is that a tautology? It's certainly rhetorical. But then, aren't all questions posed in a diary by their nature rhetorical?)

I'm talking to myself. This is too close to desperation. I'd better stop. The catharsis has failed me. Thank god W drew stumps. Feeling responsible for dragging someone else down would be the final straw.

21 March 2013

Had a visit from social services today. I've seen the lady before and she remarked on the difference in me, that I wasn't as cheery as before.

I said that I am struggling to figure out what help I need, but I know I need more help. She's going to speak with her manager and get back to me with a plan. We'll see.

I've spent most of today trying to figure out what was so transparent about me and how I feel. Then it dawned on me. I am usually the quintessence of eloquence, but today I was struggling to find my words. It annoyed me. But then maybe that's the 'real' me, inside.

Frightened and unsure of myself is not how I want others to see me.

20 March 2013

For the first time since my diagnosis, I think I know how Johnny Hicklenton felt. It's nothing to do with pain (I don't have much) or even being a cripple (although that's no bed of roses).

It's the feeling of total fucking isolation. That a visit from social services marks a high point in my week. It's the intense envy that I feel towards everyone and everything.

I hate that in myself. It's not me, or at least it never has been up to now. I have always been generous, wanting the best for others but now I really don't give a toss.

Worst of all, I just reread that last paragraph and didn't want to change a word. Not one. And that scares me.

I need to make sure all my affairs are in order, just in case.

19 March 2013

Today was a good day. For the first time in ages I was able to do something for somebody else. I have no way of knowing if it will germinate, I'm just the 'marriage broker'.

Just to be clear,I've not started a new career; a friend has been unable to find a job so I sent a message to most of my network, and a guy I've known for much of my career came back almost immediately.

It felt so good. I hope something comes of it, but the buzz is there again. If I never feel it again, at least I know I've got it.

---------------

It seems I have my mojo back. Just had a shower, and found myself singing. Eek! I may be turning normal. Saints preserve us.

18 March 2013

I don't know. Really I don't. I thought I did, but I don't.

Not that I expect much (or anything) so I guess I'm coming out about even. I just feel like there must be more, to make it all worthwhile. I feel so selfish, wanting 'things' my way. But why? Why what?

I feel that I should be drunk, or stoned, to be writing such utter bollocks. But I'm neither. My darling best friend suggested I see a hooker. She's been making the same suggestion as long as I've known her. I don't want or need sex. The things I need can't be bought.

She was right about one thing though; it's a good thing I partook freely when I could.

Now there's a useless observation. Like telling someone with AIDS that at least they had a good root. Truth is, all I want is to be loved and cuddled. I'd give pretty much anything for that.

Maybe that's what keeps me going, the stupid pointless belief that I might find love? I may as well give up now.

17 March 2013

Another day in paradise. It was actually better than that sounds.
Both of my boys came round which was lovely as always. And there is a night of one of my favourite social events next month so lots to look forward to.

I'm still unsure of what to do about my personal care. It's a real dilemma. I know I need some help but I'm not sure what or when or how often. I do know that I have to get it sorted before I start dating again; I can't run the risk of things falling apart because of the MS. But having a carer will be so intrusive; where will my privacy be?

What price fecking independence? I'm sure that nobody ever thinks that independence is more than not living in an institution.

Maybe I will try to talk it over with W. she did say she'd help me to sort it out. Truth is I don't know where to begin. How stupid is that?

------------------------------------------------------
My youngest brother has just popped round.

I took the opportunity to voice my fears and my needs.

What is clear is that W wasn't  just my lover and friend, but her being here allowed me so much freedom and independence, it's impossible to explain (to anyone who doesn't already understand.

She was my Jiminy Cricket.  When we were going out, she would rein me in, reminding me that letting her do things was conserving my energy, so that we could do more together.  I was also able to push myself harder, knowing that she would take up the slack.

She gave me more independence just be being here.  Not, I hope, that it was a one way street.  I gave what I could.  But in the end, I knew that it wasn't enough.  That was the reason for my tears so early on; without knowing quite why, I knew that it couldn't last.  And that is the bitter, unpalatable, regrettable truth.

15 March 2013

Today is shaping up as a good day. Got up early basically because because that's when I woke up. Seemed like a good idea.

Plus I'm going to the second and final stop on my 'farewell tour'. Yes I know that's not much of a tour, but I want to do the things that are special in my memory before too much time has passed so that, although she's not said anything, I'm not intruding on my friend.

The two places are both special because they hold fond memories, which I so want to etch on my mind. There is one other place, a beautiful gardens where we had tea, but I think that can be done another time, without fear of intruding. More public and more space.

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Talk about spoke too soon.  Just as one door closes, another slams in your face.

I know I didn't take her for granted.  Never.  And I knew it was all too good to last.  Yes at times I felt a twinge of resentment that she always drove the car; just a twinge, but it was more frustration than anything else.  I knew it was irritation that it was the sensible thing to do, because it left me with more energy.

What I hadn't realised was how I was coming to depend on her.  And that is a painfully unhealthy position.

It reminds me of the time, early in our relationship, when she was pushing my wheelchair in Windsor, and I burst into tears.  I feared more than anything that I would fall in love with this angel, and that it wouldn't last.  How prescient was that?

And now, everywhere I want to go is too hard, too far, too inaccessible.

It really is one step forward (metaphorically) and two steps back.

14 March 2013

I am struggling. I am torn. I have never felt so alone, so unsure of myself. I can only write this knowing that she will never see it. And that matters. It matters because she has already done the most courageous thing a person could do.
She didn't leave me because she was weak. She did it because she was strong enough to walk away, when it was clear to her that I am not the man she wants.
I, being me, could see how painful that decision had been, but she had the courage to tell me to my face. How could I not, seeing her bravery, her decency, how could I not do my best to make it as drama-free as possible?
All I want, all I've ever wanted is for that one person to love me, unconditionally. And I thought, I dared to believe that just maybe she was that one person. Now I know that it was the triumph of hope over expectation.
For the first time I understand the truth in that trite greeting card maxim:
"If you love something, set it free; if it comes backs it's yours, if it doesn't, it never was."
I've done that and all I'm left with is sleeping in the centre of the bed with that fucking 'Clinton's moment' ringing in my ears.
I don't envy her being able to go out with friends and socialise and do whatever she wants. Not for a moment. I envy ALL those who are able to do that.
I am jealous of all the people with their carefree lives. Whatever millstones they think they have around their necks, I'd swap places with then in a heartbeat, just to have my freedom back, to taste the independence I worked so hard to achieve, never thinking that just when I thought I was winning, that all I was doing was running up a down escalator.

12 March 2013

Today is a good day. 

I took the bull by the horns and had a shower on my own.  Not such a big deal?  With three different seats in the wet-room and having to manoeuvre between them without a safety net, I thought it was a big deal.

And now I've slain that dragon I think I will have the confidence to do it again.  Funny how the little things take on greater significance.  If it hadn't been for 'the curious incident in the slippery wet-room at the Leicester Travelodge' perhaps I would have had more confidence  I don't being found on the floor, I would rather it wasn't butt naked.

12 March 2013

Oh my, I've had the seeming ambiguity in my reference to my 'farewell tour' pointed out to me. I was merely referring to the likely lack of opportunity for me to visit a couple of places where i have so much enjoyed being, given changes in my relationship status (how pompous does that sound?). Ok, since I was dumped (oh dear, now that sounds bitter). Take 3: Since the resignation of my most recent chauffeuse (bloody hell, it's getting worse). Right. My last partner lived a good hour's drive away and, ceteris paribus (that's not pretentious, I just like to give my Latin/Economics nomenclature the opportunity to stretch its legs), I'm not so likely to have the opportunity to go to places over in her neck of the woods.

So if that's clarified things, I'll get back to the business of coating these pages liberally with the minutiae of the trials and tribulations of my existence, until such time as I shuffle off this mortal coil.

08 March 2013

So where was I.

Ah yes.  I went out last night.  Just a social thing with some friends in a pub.  But the pub's in Putney, about an hour's drive away.  No biggie, thought I.  And it wasn't, really.  Got there ok.  Parked no problem.  Then it got harder.

I'd put my FES on, so walking was a bit easier, but every step was an effort, not helped by the rain on the ground.  I was continually wary of my sticks slipping.  But I made it to the door.  A very nice man held the door open.  As I stepped through, my sticks slipped on the wooden floor boards.

Quite how he caught me I shall never know, but he put one arm out and steadied me.  I made it gingerly round to where my friends were sitting and collapsed onto a chair.

I enjoyed the 1 1/2 hours I spent there.  But I'm not sure I'll go again.

I think of it as part of my 'farewell tour', a last trip to places where I have been so happy.  I sat next to my ex; the conversation was cordial, but maybe a little strained.  That made me sad.  Not surprised, but sad.

I know I'm not easy to be with, and I certainly bear her no ill-will.  She looked beautiful.  But I had to accept that we will never be more than friends.

05 March 2013

I'm back again. To be honest, I'd almost forgotten about you.

Today has been another shitty day.  Having found the girl of my dreams, turns out she wasn't.  Christ I hope that's not my lot in life; a seemingly endless stream of girlfriends who disappear like the morning mist.

I can't blame her.  It's not everyone's dream, to be shackled to a cripple.

Anyway, back to today.  Was meant to be going to the theatre with said ex, who is sick so that left two choices: ask one of my family to go as my 'carer', or skip it.  I chose skip it; I've no doubt it would have been good, but having somebody else accompany me wouldn't have been the same.

So I decided to try one of the jobs I've been meaning to do for a while.  It was then that I made a mistake.  All too often these jobs involve sitting on the floor.  And I couldn't get up.  Then the doorbell rang.  Who rings my doorbell at 9pm?  The nice man delivering my prescription is who.  By some feat of endurance, I managed to haul myself up.

But.  I suddenly realised how alone I felt.