Saturday, October 16, 2004

Living beyond baseline is causing a downturn

Here is something I have written in the past week or two. I am posting it here as a reminder that for a solid week I was unable to post to my blogs. I managed to write and send four emails.

Every day I wake up hoping to be able to blog it - but while the base of my spine tingles, I know I must resist every temptation at continuing to run on empty or I will cease to function for many weeks, months and maybe years. Right now, I am feeling so ill I wonder if I am walking a fine line between being at home and independent - or in hospital. I cannot bear the thought of leaving Ophelia behind for six weeks to go to hospital that is a three hour drive away from here. It must be preying on my mind because I wake up in the night with nightmares of being parted from Ophelia.

The trouble causing this major flare up is that I am having to manage food preparation and cooking by myself. The new lady I hired was to be the answer to my prayers. Others I'd hired could not cook and needed too much of my input which defeated the object. The new lady is a trained chef and home economist but has thyroid problems. She is undergoing treatment that is not working - her symptoms are similar to mine - so it's pretty pointless in her struggling on and getting and worse to help me - so I have to wait to see if she gets better, which might take months. I am not up to finding anyone else right now. Food is the major problem and general day to day living is the other major problem. Heh.

If I could just lay here with my laptop and Ophelia next to me, have earplugs to rest from noise, dark glasses and a peaked hat to rest from bright day light, blink my eyes twice for food and it appears on my lap, blink my eyes three times to have anything else taken care of, have telephone conversations without having to speak, received visitors without saying a word ... the company of people ... to listen to conversations - I could move mountains with my brain and heart .... and rest my body to enable whatever is wrong to heal.

It's been five years October 10 since I fell ill and, apart from the skills I've learned to manage this illness and keep down the pain, there has been no improvement. I am less mobile now than I was four or even three years ago.

Except for three weeks late Dec/Jan when there was nothing to do, food was all prepared in advance, no visitors, nothing to have to deal with or handle, no opening and closing of doors, people turning up unexpectedly -- ever since then, I went on all sorts of trials, trying to pinpoint what gave me that three week window of feeling an improvement - I almost felt like my old self - thought it might have been food, I hadn't eaten bread or oranges over Christmas - so I cut out bread and went on a gluten free diet - I cut out citrus fruits - some of it may have helped but that you'd notice.

The eyeopener I had for those three weeks was that my body felt no permanent damage, it didn't feel weak, and the pain that is etched on my face started to disappear, palor no longer white or grey, complexion got colour and eyes looked more clear and wide open and less ill.
- - -

Found this other item in my drafts folder. It is interesting to me because I was feeling deathly ill and barely functioning at the time - too ill to call anyone for a chat or manage visitors - felt desperately isolated - and uncared for. Wrote it to myself for something to do, to stop from going out of my mind and jumping out of my skin. I recall using every fibre of my being to make the writing sound the opposite from what I was feeling. I am surprised to see the quality of writing and spelling - muscles from head to foot burning, heel of foot burning, brain was in such a fog, ear was aching, throat sore, back tooth throbbed, lips dry, even scalp felt sore and hair on head felt heavy, could barely see out of burning glazed eyes, arms ached and hurt having to hold them out in front of me to rest hands on keyboard and type. Here is, unedited, what I wrote to accompany a report on Ampligen (see next post above):

These past few weeks I am feeling worse than usual and am still too ill to concentrate well enough to produce commentary on a technical post such as this. I have no-one prepare food and cook food these past few months. I am having to manage myself and it's set me back. Not that there has been any improvement over the past five years. Quite the contrary. I wasn't bedbound 23.5 hours a day in the first year. Could still manage to get to the doctors without feeling like my innards and skeleton were collapsing and body and brain getting so inflammed, I couldn't imagine meningitis feeling worse

Limited stamina means exactly that. When it runs out, it's gone and no matter how hard you try or are determined, you cannot function until something settles enough within the body. I've said it before - my feelings are that cortisol stress hormone is one of the culprits. It's the only explanation I have for the sudden trickling sensation of something that to me feels like battery acid oozing into the veins that flares up the muscles making them burn and sting and feel inflamed right into the brain affecting the eyes and ears where visual and audio stimulation

It's been said the quality of life for people severely affected by ME/CFIDS is comparable to end-stage AIDS, and that the pain and suffering experienced is the same as dying AIDS sufferers in the last two weeks of life. The reason I have written that, while what I am experiencing is clear in my mind, is that while being plunged into the depths of this illness, I wondered how it was possible to feel so ill for five years without it being terminal.

I know of only one person who suffers in the same way as I do. I have never met, only on the phone. She is 71 and more mobile that myself but has been ill for 14 years without respite. Recently a GP doubted her diagnosis of M.E. and tested her for Lupus. Nothing showed. She travelled to London to see a private specialist and spent thousands of pounds for a body scan. Results showed ageing bones is all. Her GP then sent her to her local hospital to see what they could do to help. When she turned up, they more or less asked her what she was doing there, because there was nothing they could do.

Worse than the pain and suffering and isolation is not being believed or understood. People see you using your limbs, standing and walking to front door OK. But they don't understand why you can't walk some more. Or sit up long enough to go out in a wheelchair.

Some friends say: "if only you would get out for a walk into the fresh air, I am sure you would feel better" ... "When you are housebound you lose your confidence in going out and so won't go out" ... Yes, I do have a choice but if I go out I become too ill to manage when I get back. I'd need to be wheeled on a flat bed or lay down during a car journey - just cannot sit up long enough to manage a visit somewhere and the return journey. Not that the body gets paralysed, it feels like the skeleton and innards can't handle being vertical. It's called orthostatic intolerance. If you don't lie down you will collapse. Body temperature changes, the slightest movement or distraction causes stress and something trickles and seeps into the veins and muscles like battery acid. A medical journal once described it as the body going into (medical) shock.

3 Comments:

Blogger Hazel said...

So glad that you are posting again, though I hope you aren't posting too much to cause a downturn again. I had meant to email but I didn't want to bother you if you were having a bad time. I'm never sure whether its better to make contact in a situation like that. I understand a lot of what you write here. We'll be asking my gp again about ME when we see him next. I hope you get your housekeeper situation sorted out.

October 16, 2004  
Blogger Carrie said...

I am very concerned about you. Are there any agencies that can help? Someone who could come in to cook and clean and that you didn't have to pay for and who is healthy?

October 22, 2004  
Blogger Ingrid said...

Hello Hazy and Carrie, thanks for stopping by and saying hello.

It sure feels strange over here in this other blog. Doesn't feel like "home" at all - like an empty room. I've been looking for another template and will change it one day when I can settle on the one that's right. The one by Kevin MD is a custom made job by a site professional software designer.

Yes, I am still posting too much but there is nothing else I am able to do and I get so tempted because it makes me feel as though I am doing something and am connecting to other people. When you see me post reports without any commentary I am giving into the temptation but trying to cut corners and save energy. Lately I've been so ill, the days have gone by in a blur - didn't even know what day of the week it was - felt like I was hanging on to life by the skin of my teeth.

Last month, when I needed to start ordering cards in order to get them done in time, I'd decided against ordering and came to terms with letting Christmas pass me by this year.

I'm not sending out any cards or doing anything food and decoration wise like I've done this past four years. It's just too much. Cannot manage the extra activity. If someone was here to do all the thinking and planning and organising, fine, it would be lovely - I love Christmas - but the 3 month ordeal during summer of the building paintwork and balcony redone - and lights put in - has set me back coupled with the lady who cooks being ill.

If I don't put up decorations or switch on TV, it won't seem much like Christmas which will help to try and forget about it. Except the guilt when cards start arriving ... I'll just have to deal with and get over.

A friend recently told my illness is caused by my domineering mother. I despair at people and things they say nad get so upset over the lack of understanding it is making me withdraw more and more from visitors. No matter how much I explain - nothing gets through.

Another friend that keeps telling me to get outside for a walk in the fresh air was seconded by another friend who said - "well you see, there is someone else saying the same thing ... sometimes other people know what's best for you, better than you know yourself".

None of these friends are here to help me manage the minituae of life on the days and weeks and months following "going out for a walk" .... OK, people do mean well and are trying their best to think of ways to help - but they just don't seem capable of understanding my one request: to please believe what I am saying is the truth: if I say I cannot manage it, I don't need cajoling" I cannot manage the constant battling of people who think they know what is best, when really they have not a clue no matter how much you explain.

Only another sufferer knows exactly what I am talking about. Most of them experience the same thing not only with the illness but with people, visitors etc. Must close now. It's been on my mind to respond to the comments here - not managing it over at my main blog because I am leaving comments a few comments here and there at other blogs I'm reading.

A friend recently brought by a weeks worth of frozen meals that are produced using 100% organic produce. They are produced by a large health food store but in another town. I am to try these meals and see which ones I like best so I can order in bulk and the friend will bring them to me.

One drawback is that the meals are in tinfoil tubs so I can't defrost and heat in microwave. I have to remember to take one out the night before which turns out impossible on bad days. If this happens, and I can't wait all day for it to defrost, I'll try and remember to put it straight in the oven and see what happens. There are days when I am so ill, I cannot even think this through and grab a packed of dry crackers instead - cannot coordinate, think, plan - it has to be experienced to be believed that one can be incapable of heating a ready made meal. Maybe it's natures way of stopping a sick person from getting into life threatening situations, like cooking and burning pots and leaving stove rings on etc.

I've tried three people to cook here - including an agency - none of them, believe it or not, had any feel for food or cooking and could not whizz something together off their own initiative - not even an omelette. The problem seemed to be that they would not take responsibility for their jobs and needed constant input from me. I paid double the going rate to try and get the best help I could find but money may help maintain someones reliability but not improve their capabilities if they do not love food and cooking.

I don't have neighbours here - they are all holiday lets or second homes - others that I know live in the surrounding towns - and a dear friend who was of enormous help to me has been stricken down with an illness for which she is undergoing treatment right now.

Thanks for your concern - I can see how you understand the difficulties and all what is involved. The Care Agency I called doesn't have anyone who can cook. Seems anybody who needs to work and knows how to cook works in the catering not the caring field. It's not a case of money - I get a Disability Living Allowance - the problem is not being able to find the right help in a small seaside town. And it is too much of an ordeal for me to keep chasing this through until I find the right person. If I was well, I could have managed it by now. I guess in a very large town or a city like London one might be spoilt for choice of agencies, cooks etc.

Must close now. Sorry for this rambling comment. It's easier to ramble than it is to concentrate on being succinct right how. Eyes and brain are already burning with exhaustion and it's only 10.30 am.

October 23, 2004  

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