Tag Archives: Chronic Fatigue Syndrome


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Doing it to myself

I guess that’s what most things come down to. I do it to myself.

I write and delete, write and delete … block up completely as soon as I think of other people reading my [insert derogatory term of choice here] output.

I think therefore I stop.

I have a new job. Hoorah! It is fun and an adventure, it is in the best place I could think of being … and … then … I start thinking. It’s the same as any other job because people are the same all over. Just because they are more like me than anywhere else there are still the same elements. I’m the same. Loyal too quick, want to do well, want to be worth something, want to feel like I’m worth paying …

My condition is back (never went away really, I’d just reduced activity to the level where I thought I was coping with it). I wanted to hide it, I wanted to be accepted. I wanted so hard to just be good at something. I tried not to be me but three months in and I’m too tired to smile and I’m trapped in my head and I know I’m just making it worse.

Do you remember how you tell if you’ve got ‘flu or a cold? I heard it was that with a cold you could bend down and get that £5 on the floor. If you had ‘flu, however, you would just leave it. The new job is a contract and I get paid when I go in. To my mind I’ve left quite a lot of money on the floor and, frankly, I just don’t have the energy to do anything about it. Well, other than beat myself up over it.

Amazing. No matter how tired I get there is always enough energy left for my own scorn. A constant well of derision, a babbling brook of self loathing. You could hide the Loch Ness monster in the depths of my self loathing. All the therapy. All the talking … and then the brain fog hits and I forget the words that are clever and are my job and once I’ve fallen through the planks in the rickety pier of my self esteem there is only the deep and the cold. Always waiting.

I have tried the pep talks to myself. Even with my basic interest in maths I know how useful a job can be, and this one would be very handy to stay at. Allowing for putting money aside for holidays, a new boiler, the over-the-top and completely unnecessary side-by-side black fridge freezer (to match other appliances in same range) etc etc this is half my mortgage paid off in 4 years.

Money is no motivator.

My sister in law asked me how I thought it was going and the words came out before I knew they were there. Comparing 4 months in the house, barely speaking, barely seeing people to 3 months of interaction, laughs and ‘being worthwhile’ I found I preferred it just being me and the cat most of the time. The cat might not pay me, but equally I don’t have to cope with public transport (let’s just not go there) or the bone deep pain as I walk or the random phone calls that this job entails, or …

… or the fact that I am with people and I like them and I don’t want to let them down, or be weak, or be flaky. Some of them seem to like me. Maybe it would be easier if they didn’t.

The more people I know the more people there are to let down. I do it to myself.

UoM old

Alan Turing Building, University of Manchester

Maybe I should try to hold on to the idea of what there is outside the windowless room in which I sit. Outside is the University. Outside there are things other than me.

I can go and look at the Shabtis in the museum. Maybe to remind myself that I don’t have to be one, maybe to show myself there is dignity in accepting I am one. Maybe one day I’ll stop doing it to myself.


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When is sick not ‘sick’?

I think it’s a bad sign that even I am uncertain when I’m ill.

The thing is, ‘ill’ is my default setting so when am I ill enough to be off work? Yesterday was just one of those days.

I’ve gradually been getting slower and slower, moving around has got harder and this most unusual English weather has reduced the quality of my overnight sleep from ‘getting by’ to ‘farcical’. So, yesterday, I got up out of habit then realised nodding off again in the shower was probably not a good sign. Then came the tricky thing of trying to decide whether or not I was ill enough to ring in sick.

  • Pain in joints – check. Full set? – double check
  • Not really wanting to be too far away from toilet – check
  • Difficulty supporting body weight – check
  • Brain not working – uhuh, you betcha

And then, on top of this, is the extra little frisson of stress absolutely guaranteed to wipe me out when I have to make the phone call. I hate it. I hate admitting not just that I’m ill, but that I’m weak enough to give in to it. I hate the reaction at the other end of the phone, the “just you take it easy and look after yourself” when I don’t have it in me to believe it. I know it is meant well and I know that the voice knows I’m not putting it on. It’s just this … thing … with me

Back to where I started. When is sick not sick, when is it sick enough and when am I ever ‘better’?

My hands hurt today (typing this has not been fun), my feet hurt (hello plantar fasciitis my old friend), hips and elbows ditto. But I’m only mildly nauseous, and lying down for most of yesterday has to have done me good. Hasn’t it? Clearly I’m now well enough for work …

 

 

*Edit* 29th July – a number of revisions were suggested today. Unusual to get feedback, so I’ve been giving this a bit more thought. (Apologies if I get this wrong, some of this is literally occurring to me as I type and my shrink is on holiday.)

All the little conversations I have with myself – ‘am I worse today?’ ‘how much real sleep benefit am I getting?’ ‘can I keep running on so little?’ and my classic of ‘is this sick enough to be off sick – have precursors in my first marriage and first really screamingly obvious self esteem problems when I had no idea how bad was bad enough.

All the times I should have been confident in my own ability to decide whether or not I’m too ill for work, or have been able to tell myself to take a break; all the times there is a voice telling me to take care they can’t hear the shouting voice telling me I’m worthless.

When a sensible person would have said enough is enough I let myself be shouted at, when I should have gone I told myself I’d made a promise (“it’s not like he hit you”), when I was pushed into the cupboard (“it’s not like he hit you”), when I was so scared I could not say no (“its not like he hit you”), dropped on my head, the slip down the stairs, when he raped me (“it’s not like he hit …”).

I’ve no idea where I was in that time of fear. Just a couple of years and so many people have it much worse off than me. Even afterwards I was ashamed of my shame, no esteem for my pain.

Clearly there must have been a problem before the days when I thought it was normal to be told that I was stupid, that I would never get a good job (i.e. like him, in IT), that I was just a waste of space as a fucking arts student. And the shouting. The nonsense rants that went on and on because he thought it funny that I was so confused and small and scared and silent. And so I waited. I waited for it to be bad enough to somehow justify getting rid of him because I didn’t think I had the right.

Why did I have to wait for it to get to rape?  And then why did I pay him off just to be rid of him instead of doing anything that would actually validate me? I paid him to go away, and never mentioned it because I didn’t think I was worth the bother. I downplayed it, it was just a thing that happened that didn’t mean anything …

I got through the day in the office on Friday, I dragged myself back there again today feeling sick and tired and so very, very, old. Today was bad. Today the mantra was ‘two more days then holiday, two more days then a rest. Tomorrow the mantra will be counting down the hours while I try and make sense of what is in front of me.

When is sick not sick? When I’m the idiot trying to work it out.

 


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Hell is other people

Ok, so Jean-Paul Sartre beat me to the comment but, apparently, it might be appropriate for me.

I’ve been having trouble for a while with my hearing (have I mentioned this?). Not that I’m going deaf or anything, just that when there is a lot of noise I have difficulty in filtering out the background static from the things I should be concentrating on. As I spend a lot of time concentrating on the little voice in my ear (telephone headset, not the ‘voices’ you understand) the background chatter in the office has become something of a problem.

I’ve always been a bit picky about sounds. Not as bad as my brother (he’s moved house a few times just to have that gap between him and anything that might generate noise), but enough for it it cause noticable problems for me as I’ve got older. No idea what I would do without an iPod to cut me off from the outside world some days. It’s a bit of a shame, though, that an iPod while eating meals is not considered appropriate as hearing someone else eat is pretty much guaranteed to make me stress out. (I guess I should say I also can’t stand hearing myself eat or even be aware of the sound of my own breathing.)

Certain smells/combination of smells also seem to have an effect. Whatever you do, don’t come close to me or touch me unexpectedly unless I have already touched you first. Once the reaction has been triggered it’s like I’m sensitive to anything – if you are close to me I feel the warmth from your skin, speaking to me makes me cringe inside when I feel your breath if you look at my face while you do it. If I ever look so down and forlorn that all you want to do is give me a hug then don’t. Just don’t do it. One person can give me hugs (briefly and infrequently), anyone else does the same and it makes me want to run away screaming. The fact that in many cases this might not be an ‘appropriate’ response means I might stay put and let you trap me.

I was brought up to be good and polite. It made me docile. It took away my voice so much that I never even felt that I had the right to say “no” and to protect myself from the things that make me feel antsy. A year into the talking and my therapist has now suggested that I might be somewhere on the spectrum of having Sensory Integration Disorder. I need to do more reading on this. Potentially it could explain a lot for me. Equally it could just be some fancy excuse for me being a moody sod annoyed by just about everyone and everything. Is this just a title for something everyone has on a bad day? It’s not like anyone is going to suggest I’m autistic (middle-aged, female, communicative, terrible at maths, unable to draw from memory or do any other mythical autistic cool stuff).

I’m wondering that maybe, just maybe, there is a connection between this nebulous idea of Sensory Integration Disorder and my ME. Basically – am I exhausting myself mentally coping with the externals and therefore exacerbating the annoying drag of the fatigue and other associated symptoms that I have? It could even be the other way around. I have ME and that strips out my ability to cope with the day to day shit of having to be with other people.

What do I know? I’m just the weirdo in the corner.

 

 


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On not appreciating what I had

A few years ago now I started to feel ill and began the merry-go-round of doctors, tests and – needless to say – problems at work as I went through phases of just never seeming to wake up.

Symptoms: fatigue, thirst, nausea, pain in joints, sweats, burning skin, itching, loss of concentration, insomnia, increased irritability. Did I say fatigue? Oh and forgetting words at work! It was so frustrating. If I could get to the end of a sentence I couldn’t remember the …. did I say fatigue?

And what seemed to bring all this on? I had hit forty and joined a gym. I had bought a pair of trainers that corrected the pronation in my ankles and could run for the first time like ever without pain. At the point of going to the doctors I had been at the gym 3 times a week and was running at least twice a week. Not doing anything mad, I’d just gradually built up over time in an attempt to correct the damage of years of neglect. The week before I had a bit of a collapse when my legs just didn’t seem to want to work any more I remember that I had never felt so good and everything seemed to be going well – I was happy at home, work was good and I’d gone from being over a size 16 to being an easy size 12.

Test start and questions are asked, given my age and the fact that I had lost about 2 stones in weight (total weight loss ended up at 3 stones) diabetes was an early contender. But no, I’m not diabetic … just glucose intolerant. Two months of tablets for this mystery intolerance and I’m back at the doctors feeling no better just to be told that “oh no, glucose intolerance has no symptoms, that was just what we found.”

Nearly 2 years in all to get a diagnosis of M.E. (Chronic Fatigue Syndrome, or whatever is the current fashionable description). Nothing really very scientific, they just tested for everything else and when it was proved not to be Cushings, or Addisons, or a pituitary tumour, or anything else that might have been treatable we ended up with M.E. as the last man standing. The only thing was not seriously suggested was anaemia and I had begun to think that could have been highly likely with the amount of blood that I lost in the process. It was a good thing that I have always been vaguely interested in medicine and have absolutely no shame about collapsed veins and bruises on my arms.

Maybe I have been one of the lucky ones, there was a neurologist in the area who ran and M.E. clinic so I got onto a management program and have also found a sympathetic ear at occupational health. I know I could be much, much worse off.

I still work. I have had to reduce my hours but I do still have my job. The people I work with are quite understanding, they are used to seeing the zombie in the corner and know that some days she just can’t make it in. The people I work for say very little. What can they say? Though I never wanted to have the words said it seems that I am now protected by the disability discrimination act (that sounds so wrong and potentially unfair to those with more ‘real’ disabilities).

I am now low sugar, low fat (high cholesterol was the news flash last week), low/no caffeine, and low dairy (oh, but increase the cheese because of risk of osteoporosis – can you see a problem with that?). I’m still on the tablets for glucose intolerance. When asked what the point was of taking them I was told that it was to avoid diabetes in the future and that I couldn’t come off them unless I lost a lot more weight (“Hang on”, thought I, “you said the weight loss was part of the problem …”).

I am also now quite low on fun.

None of my symptoms have actually gone away, they just come and go mostly according to stress/excitement. Going for a night out and having a laugh can cripple me the day after. Bad news can set me off. Making the effort for social interaction definitely takes it out of me. Strangely enough the gym has been one thing that has kept me going, I have just had to learn the exercises that cause me problems and work around them. I can manage a massive 6 – count ’em – 6 lunges in total and can now skip for 1 minute before knowing I will collapse later in the day. I no longer attempt to run any distance. In contrast I seem to be able to do sit-ups, push-ups, some planking and punch like anything with no apparent ill effect.

I’m not certain but I might be one of the few M.E. suffers who kept their gym membership and users time off work to see a personal trainer. Odd though it might seem this is the only time I get encouragement to try and see what I am still able to do. I may no longer be losing weight (how all this started in the first place) but my body fat has gone from 29% to around 22% so for a forty something woman with a sedentary job that’s not too bad.

Wikipedia have a cracking article at http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome It scared the daylights out of me when I first read it, now it’s like an old friend.