Monday, September 19, 2005

I feel my luck could change

I had my… seventh physiotherapy appointment this afternoon, I have only managed to attend two so far and this time it was the physiotherapist who phoned in sick. Fantastic! I fear this whole experiment is doomed; the particular guy I was seeing was only on a six-week secondment to Whitby. Bugger.

And today it hurts a lot. I am going to have to make another one of those trips to the doctor where I try to ask for a higher dose of painkiller without sounding like a wimp. Added to what I hope is only an increased tolerance to the medicine, my lymph-nodes have been up, my throat sore and my temperature all over the place for over week now and it’s getting worse. This is a dangerous time of year for me, much as I love the autumn. Here is a lovely picture taken in the Lake District last autumn by my genius yet ginger brother-in-law Adrian Taylor. I was there and it was that lovely.

I hate the up and down nature of my illness – it is the worst element. It makes it very difficult not to be anxious about my health because if I relapse now it could mean a crappy week or a crappy month or it could be Christmas before I’m back to where I am now. Of course, I can’t do much about it anyway so I really shouldn’t worry, but the uncertainty of the situation is intrinsically stressful. I would have to be in denial not to be just a little bit nervous.

Still I have been reading about Buddhism and disability, in particular the difference between pain and suffering. Pain is a physiological event, a combination of electrical and chemical activity. Pain only becomes suffering, the theory goes, when the mind thinks that it shouldn’t be happening, when the mind resists what is a natural and inevitable part of our experience. I am too tired to discuss why this might be a useful concept, but I think it might.

I owe a great number of letters and e-mails so please bear with me. Thanks to everyone who voted in my poll – wowza - I hope to be modelling the results for you at the end of the week.


Lady Bracknell said...

Lady Bracknell wonders whether the Goldfish might be momentarily cheered by sight of the accompanying portrait?

Her ladyship has learned over the years to live in the present and not to ponder on what physical horrors the future might hold for her. She consider this to be the only way to retain her grasp on her sanity (or what remains of it).

The Goldfish said...

I am indeed cheered by the sight of Lady Bracknell's friendly face and warm smile... to say nothing of the ridiculous hat.

Of course, she is quite right - I mean to say, you are quite right because this is my blog and I'm allowed to speak normally here.

I never worry too far into the future. I don't worry about what might happen in five or ten years time, it's more tomorrow and next week.

The biggest deal is that I was hoping to be able to go to see an exhibition of Picasso and Matisse tomorrow, I've been looking forward to this for about 6 weeks and now it's not going to happen. No great works of art ever come within a 50 mile radius of here.

Thing is, it's okay; the exhibition goes on until the 30th October, but I'm catastrophising and have convinced myself that if I can't go tomorrow I ain't ever going to go and I can never do anything and everything is useless. Boo hoo!

[throws all her toys out of the pram]

At the same time, I feel guilty about the physiotherapy because if I had been up to it and the physiotherapist hadn't been sick I was half thinking I would abandon the course of treatment just so I would be up to go looking at pictures of folks with their eyes in the wrong place tomorrow. But don't tell anyone that...

Lady Bracknell said...

If Lady Bracknell put all the tickets to theatre events which she had been too frail to attend end to end, she would have.... well, she would have a lot of tickets.

She had front row seats - booked six months in advance - to see Patrick Stewart in a Ben Johnson play in Leeds. She also missed Paterson Joseph's Othello. Not to mention Adam Hills. Developing the capacity to live with these disappointments, and not to be embittered as a result of them, is one of the hardest lessons she has had to learn.

This is why Lady Bracknell gets very angry when she hears people spouting arrant nonsense about disabled people being able to do anything they set their mind to. There are a great many things which her ladyship cannot do, and some of those are things she used to enjoy very much. No amount of wanting to see a particular performance will make her able to attend if her body has decided it will not play the game.

As her parameters grow ever narrower as a result of her impairments, the challenge to derive pleasure and enjoyment from what such few options as remain to her becomes more demanding.

But it is a challenge which she and her fishy friend MUST rise to, or they will go mad. (This is not to say that neither of them should have days when everything seems intolerably bleak. Just that they should endeavour to recognise these days for what they are, and not to fall into the false assumption that every day henceforward will be of an equivalent bleakness. Experience has shown that it will not.)

Courage, mon amie!

Katie said...

Hi Goldfish, Sorry to hear that you're not feeling well, It must be hard for you, but you have to bear it and hopefully things will look better for you. Keep at it goldfish, you will be better soon I hope.

I have to keep telling myself not to be afraid or upset about the future but it still scares me as to what will happen. maybe to cheer yourself up, you could do something you love doing like watching DvD's or listening to your favourite music that makes you feel great, or in my case listen to my TV theme tunes CD I bought today that celebrates ITV's 50th Birthday. The Strike It Lucky tune really gets going and happy!!!!

Hope this helps and you feel better soon, honey!

Anonymous said...

Goldfish, I do know how you feel. What is so often forgotten when discussing the experience of becoming disabled , is that although it is a process of bereavement, those of us with chronic degenerative conditions experience repeated bereavements, and these take such a toll on the spirit.

Lord Moran (Churchill's doctor) said that "courage is something whereof no man has an unlimited supply" and although he was talking about battle-fatigue, I think it applies because it is courage we use up in confronting pain and frustration and disappiontment. Byrhtnoth's motto ceases to apply at some point.

There are times when you just have to say "This is what I would like to feel 24 hours a day, but fuck it, this is how I feel now," and go with the flow for as long as it takes to recharge the batteries.

True, fighting pain is as wearying as the pain itself, so ceasing to fight it is not "giving in" as well-meaning motivators suppose. Nevertheless, the Buddhist belief could be a burden in its turn, if one is not careful, because trying to persuade oneself of "appropriate feelings" which one doesn't in reality feel, is the cause of attrition and depression in itself. The "I shouldn't be reacting like this, it's wrong, I am a bad person" syndrome.

I don't think there are any answers to this.

marmiteboy said...

I realise how easy it might be to believe that you won't feel any better in the future. It is as Lady B says much better to live in teh present. I have long sinced worried overtly what my condition will be like when I'm old and grey (well grey anyway, for alas I'm old already). What will be wil be, I think the old saying goes.

There is much disappointment in not going to things that one was looking forward to, I can understand that entirely. And it is easy to think that things aren't going to improve enough to let you to do the things you want in the future but it's so important that you get well again. Rest up, try and relax (note to self, take this advice yourself Marmite) and with any luck you will be well enough to attend the exhibition by the end of October.

And by the way, I don't think you are a wimp by getting stronger meds. Pain control is there for a reason, it helps us lead some kind of life, where would we be without them. If someone thinks your a wimp cos you need something stronger then that's there problem. If stronger meds help you cope a bit better, go for it.

Take care and hope you feel a whole lot better soon my friend.

imfunnytoo said...


And you aren't a wimp for asking...

Those days when everything seems just too big to even think about, let alone, do anything are the tough ones.

Be well. When you can :)