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Archives for: March 2007

I'm so cool!

by tiredboy @ 23 Mar. 2007 - 03:46:52 pm

I've been wanting to make my own bread for ages. I'm a great lover of good, wholesome, clean food with no additives in. I also have problems digesting wheat, yeast and sugar, so standard bread is out. I've been eating 100% rye bread over the past year, but at £2 a pop and about 2 loaves per week, it ain't cheap. (£200 a year on bread, yikes.) Someone recommended me a wonderful book about bread and bread-making a while ago – Bread Matters by Andrew Whitley – and a couple of weeks ago I started making bread the traditional way, by making what's called a sourdough (letting flour and water ferment naturally over a few days and then baking the result). Last week I made my first loaf. While it wasn't entirely a disaster, it wasn't really edible.

On Wednesday I had another go, and baked two wonderful, fresh, deliciously tasty loaves. I can't believe how ridiculously excited I've been about this. I had to keep taking them out of the cupboard, feeling them and smelling them.

I'm looking forward to baking the next batch. Yum yum!

Home-made rye bread


 
 

The days are getting longer

by tiredboy @ 21 Mar. 2007 - 04:41:56 pm

From today, the days will be longer than the nights. This is A Good Thing.

Puttin' it together

by tiredboy @ 19 Mar. 2007 - 11:19:09 pm

A couple of weeks ago I bought myself another jigsaw puzzle. Doing jigsaws is one of the most therapeutic activities I've found. The wonderful things about jigsaws are:

It's an activity which can be thoroughly absorbing yet take very little energy. So I can enjoy something I'm doing and pass some happy hours this way, without feeling exhausted in the way I would had I been reading, writing. talking on the phone, going outdoors, and so on. Even watching TV can be too much for me when I'm more ill.

It does involve mental activity, but of a far more basic form that reading etc. It's simply a case of recognising shapes and colours. This is a huge relief for my mind, which struggles with so many of the demands I put on it. In this way it's quite meditative.

It is something constructive, in which I am achieving something. And as other people with CFS will know, being able to achieve anything brings a huge sense of satisfaction. I am constantly reminded of all the things I can no longer do, and to sit down and quietly do something I can do is wonderful. It doesn't matter if I can't put many pieces trogether in one sitting; I can put it to one side for as long as I like and there is no train of thought to lose, as there is in reading, having a conversation, watching TV, etc. It doesn't matter how good or bad my concentration is; when I come back to it, the pieces will be exactly as I have left them and I can pick up from where I left off with no problems.

It also, no matter how slowly, always progresses towards being completed. I can never do something which will set me back, as happens all too frequently with so many other activities.

Anonther thing is that, with the right subject matter, it's a very real way of bringing the outside world into my flat. The jigsaw I'm currently working on is a lovely autumn park scene, with trees with multi-coloured leaves. So as I complete it, a scene of beauty unfolds before me. This in itself is hugely therapeutic.

This is the one I'm doing at the moment: http://www.clivenichols.com/website/html/products/jigsawsmain.htm

Return to sender

by tiredboy @ 17 Mar. 2007 - 05:11:10 pm

I wish I could have done exactly that to the two pieces of post I received on Wednesday: one was a summons for unpaid Council Tax, the other was to say my appeal for Disability Living Allowance (DLA) had been turned down, and I would have to take them to a tribunal if I wished to receive any money.

These were both nasty shocks: I believed that the council owed me money for Council Tax, but it turns out they still haven't processed my exemption from Council Tax from last April; and I had been receiving DLA for 4 years prior to my most recent reapplication, and in that time my condition has deteriorated, so I am definitely eligible for it. Both of them are down to bureaucratic ineptitude. Thankfully my mother has been able to sort out the Council Tax for me, and we will have to deal with the DLA now.

It has brought home to me just how far I am from being able to look after myself: from being a fairly hard-working, independent adult I have been reduced to relying on my parents for help in day-to-day living. Receiving these bits of post also made me feel more like I'll have to move closer to my mother in order that she will be able to do more of these tasks for me. That's a very tough thing to consider for me.

It is interesting how shocks and stresses such as the above make my symptoms much worse. It has taken me since then to recover to a degree where I'm well enough to make this entry, and it'll take a bit longer before I'm as strong as I was before receiving this news.

To cheer myself up I managed to buy myself some lovely flowers yesterday. As I can't get out of my flat very often, flowers are a wonderful way of bringing a bit of the outside world into my home.
Spring flowers

One silly thing happened yesterday: after about 18 months without a working turntable (I have two, neither of which work) I managed to get a friend to drive me to the nearest Rega dealer to get it looked at. The service engineer wasn't very pleased with what he saw, but I think we managed to get the immediate problem sorted out. So I got it home, ready to start listening to all the vinyl I've not been able to hear for so long, only to discover that he had forgotten to put the drive belt back. So I still can't play my vinyl! Have to wait for the belt to arrive in the post.

Oh well, that's it. I hope my next entry will  be able to be a bit more positive, but as this blog is to give me an outlet for difficult situations I encounter related to my health, there are going to be some entries where I feel I've hit a brick wall.

Should I stay or should I go?

by tiredboy @ 13 Mar. 2007 - 08:23:05 pm

The big decision facing me at the moment is whether I stay in London or move out. I'm reluctant to move out because this is where I have made my life and where almost all my friends are. And I'm really reluctant to have to move simply because of my state of health, as though that were the governing force in my life (which, to be fair, it is). Plus, I've never lived in the countryside and have no idea whether I'd be able to cope with it!

It feels as though, if I move out to the countryside, this might help me to recover, but this is an unknown factor and therefore a risk. While I'm happy to take risks under 'normal circumstances', in my current, weakened condition, it feels as though, if the risk doesn't pay off, it might become overwhelming and I would not be able to sort out the situation as I would be able to were I in good health.

Much of the time, and especially when the noise and pollution in London are getting to me, I feel as thought it would be wonderful to live somewhere more quiet and peaceful. However, I have to be realistic and accept that this is an idealisation of what it might be like to live in the countryside. It's difficult to know what it would really be like to live in the country, it's also impossible to know whether it would help improve my health, and it's possible that if I moved outside I would be unable to move back in to London until I was well enough to work full-time and support myself, which could be years away.

A real quandary. I'm bound to post a lot more on this over the coming weeks as I try to come to a decision.

I must be a cheap date

by tiredboy @ 12 Mar. 2007 - 03:54:36 pm

Interesting. Just experienced a first for me: I was accused of being drunk by a trio of teens on bicycles, I suppose because of my tottering gait. I wouldn't mind, but I've not toched a drop! (Honestly, ossifer.)

So tired!

by tiredboy @ 12 Mar. 2007 - 03:04:57 pm

Tired by name, tired by nature.

I've had a slightly more active few days, which has been wonderful. Caught up with an old friend for coffee on Thursday afternoon, and saw another friend on Friday. Have felt quite weary over the weekend and last night I conked out at 9.30. Slept for 11 hours and today feel ridiculously tired. Note: tired, not fatigued.

I differentiate tiredness and fatigue in my case, even though I know the words mean the same. in my case, I use fatigue to describe the various symptoms of the illness, and tired to mean the effect of other things, e.g. lack of sleep or more activity than I'm used to. The kind of tiredness everyone feels from time to time.

When the symptoms of the illness are worse, walking feels like walking knee-deep in honey (imagine it) and I sometimes have to consciously think about putting one foot in front of the other. It also includes mental effects: for instance, I can't think clearly and my emotions go haywire. And any sensory input – light, sound etc – makes me feel very queasy.

Today I feel tired, produced I think by doing a bit more than I'm used to. I hope this does not mean I'll see a return of the fatigue. As I'm currently looking after myself and think I've kept within safe limits of activity, I'm confident it won't lead to another bout of fatigue. Having said that, I am finding it difficult to think clearly today, but I think that's because I feel so sleepy after such a heavy sleep last night.

Fingers crossed!

Stuck to you like glue

by tiredboy @ 10 Mar. 2007 - 11:47:09 am

I thought I'd post a message while I was eating my breakfast. I had prepared some porridge but forgot it was cooking, and it was on the stove for over an hour but thankfully didn't burn. However it has taken on a consistency somewhere betwen thick wallpaper paste and glue. It's not at all unusual for me to completely forget what I was in the middle of doing. Cognitive dysfunction is a big feature of CFS and has really impaired my decision-making, and has made me very forgetful and 'absent-minded'. This sometimes has comedy results, such as forgetting breakfast, but can be very frustrating and even distressing at times.

I've been feeling quite a bit stronger for 3 weeks ago now. It's been such a relief not to feel ill every moment of the day and to be able to get outside; the fact that there's been a lot of sunshine over the past couple of weeks has made this even more of a pleasure.

Being able to do spontaneous things has been a joy too. When I'm at my most ill I can't cope with any changes to routine, but over the past couple of weeks I've had a couple of friends pop round at a few moments' notice, went to the pub with one of them, and on Thursday got a call from a very old friend, whom I've not seen for a couple of years, and went to meet him for a coffee. He's suggested coming up this weekend and should arrive in a couple of hours. Will still have to ensure I get time to rest and don't get sucked in to doing too much just because it's fun. (I'm going to ask him to do some tidying up for me while he's here, because this place is a tip.)

Happy weekend to everyone.

Talkin' 'bout the weather

by tiredboy @ 08 Mar. 2007 - 12:50:55 pm

How very British to talk about the weather.

This morning, and for the past few days, there has been intermittent sun streaming through my windows. This makes such a difference. While I've never been able to identify a seasonal pattern to the course of my illness, sunshine – light, in general – makes me feel more lively and more alive. I've always been quite affected by the dark months of winter. I've had a lightbox (one of these)for the past couple of years, and it helps when the skies are grey and gloomy for days on end, but it's not the same as real sunshine.

I've been feeling a bit stronger over the past couple of weeks and am now able to get outside into the gorgeous sunshine. Plus, in the few patches of green that exist in this area of the city, there are crocus and daffodils sprouting everywhere.

Spring crocus bloom

While this doesn't actually improve my state of health as such, it does help me to feel less bad.

Here I am

by tiredboy @ 05 Mar. 2007 - 11:06:08 am

About 3 years after someone first suggested I start a blog, I am. How's that for leaping into action?

This blog is going to be an outlet for thoughts and feelings I have about living with chronic fatigue syndrome (CFS), which I have lived with for 6 years. In fact, while thinking about how long it's been, I've just realised that the first day I had to leave work with what became CFS was 6 years ago today. That is a bizarre coincidence.

This will be a rather single-issue blog, as I'm planning to use it as an outlet to save me harping on to friends and family; so, if you don't want to read a single-issue blog on living with CFS, please just navigate away from this page.

I'll be adding to it sporadically, depending on energy levels, and it will be esoteric, as I'll be jotting down thoughts on anything that impacts on or arises from my state of health.

Tired Boy


 
 

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