Wednesday, 19 March 2008
A Golden Opportunity Part Three
So there I sat . . . a little hopeful. Maybe just maybe I was going to get a diagnosis at last. There was no examination though, no looking through my list of symptoms, no discussion about my Hashimoto's and my concern that I seem to be losing a lot more hair lately when I wash it – or that my once pronounced eyebrows are getting a bit, well . . patchy, or that the hairs on my legs have stopped growing. The latter usually a sign I need to take more thyroxine. No discussion about any of these things. He looked at my year old blood tests and said I was on plenty of Thyroxine . . .er what about the symptomatic approach . . . I explained that my Doctor and I were happy with the dose – the consultant didn't comment.
So the pronouncement . . .
'You have, (not may have, but have) Functional Somatic Disorder' . . . .
'Functional Somatic Disorder.'
'Ok so what is that exactly?'
And the answer was 'well we can't medically diagnose you. All the blood tests done by the Rheumatologist are coming back negative. And I know the Rheumatologist very well.' Uh huh sticking together here me thinks. 'And when there is no clinical diagnosis then you come under the umbrella of Functional Somatic Disorder.'
Ah so I don't have Functional Somatic Disorder, but I come under it's umbrella?'
'Well lots of disorders that we can't diagnose with tests come under this M.E., Firbromyalgia, PMS, IBS . . . blah blah blah and studies have shown that psychology plays a part in these diseases.'
'So are you suggesting this is all in my head?'
'No not at all, just that certain personality types fit into this bracket. As studies show.'
' OK! So are you saying I have M.E.?'
' . . well you have a lot of the symptoms although your fatigue doesn't seem to be that severe.' He then drew a diagram with all the various illnesses and explained how the symptoms all overlapped and I was in the overlap somewhere . . .somewhere . . .where?
Wow how clever – he had seen me for ten minutes, on a good day and had already worked out that my fatigue wasn't that bad (really!) and he had worked out what was wrong with me when no-one since the 1970's had been able to. And all this without discussing any of my symptoms and despite the fact that my symptoms aren't typical of any of the things he had mentioned.
He did say that he would arrange for me to have a blood test for my Adrenal Glands, but wasn't expecting anything abnormal. He then went on to say that once I'd had the test then he would ask my Doctor to arrange to Cognitive Therapy to help me cope with my symptoms. I asked about the mouth biopsy that said I had mild chronic inflammation. The consultant flipped through my notes and said he had no such letter! 'But my Doctor is under the impression that I have inflammation in my muscles', I insisted, not that I particularly want inflammation in my muscles, 'but my Doctor was so definite about it.'
' Well the evidence I have here is that you don't,' pronounced the lofty consultant. He then printed off a self help manual on M.E. To be collected at the front desk and said goodbye . . . .
Berlimey . . . do I have M.E, I thought he said I didn't? What is going on. He told me he was printing off some information about Functional Somatic Disorder and gives me a manual on ME.
My first reaction was to be very upset. I didn't want a disease, disorder that had such a stigma attached to it. A disorder that was once thought to be 'yuppy flu' and like depression all you had to do was 'pull yourself together'. Once the consultant had made his pronouncement it was very clear that he was 'done' and just wanted me gone. I felt like a time waster. There was nothing to prove I was ill. All I had now was exactly what I started with – how ill I feel. . . my word against the world. Much much easier in some ways to have a definite disease.
A lot of this reaction stems back to nearly being sacked from work with my days off due to migraines. My employers didn't believe me and wanted me to go into a work when I had a migraine so that they could see for themselves how ill I was. Go into work – but I was constantly throwing up . . . anyway that is another story and discussed in a previous blog. I was and am worried what if 'they' have got it wrong. My vet was diagnosed with M.E – later on turned out he had Q disease. I can never get to grips with people not believing me. I was brought up to tell the truth and am always gob-smacked when I realise people think I am lying. The situation with the migraines and my work cut very deep.
I guess I was worried too about what people would think of me . . . Would people even believe I was ill. After all most of the time I look alright and on the surface can function ok. It is only in private that I know the extent of my illness. Some days I ache, but have energy and feel on top. Some days I ache, have no energy, but still feel on top. Some days I ache, have no energy and feel so down and tearful and doing even the simplest task seems impossible. My aching seems to target different areas on different days. Sometimes my legs and ankles and feet. Sometimes my hands wrists and ankles, sometimes my shoulders – sometime altogether. But always there are specific points. If I knock myself, or hurt myself the pain felt is completely out of proportion with the injury. I fell over in the mud yesterday and know have pain in my hip and back and running down the front of my leg. I know this will last a few of days and be impossible to get comfortable – but from experience it doesn't usually last any longer than that.
One thing I have found is that my World is shrinking. I no longer do drama, have turned down the Uni course I was going to do on person Centred Counselling. I have resigned from all the committees I was on. I do go to the village at least once a week, but rarely go out in the evening now. I was so worried about how I was going to be when KittyB and Faith were here – but I was ok. Same with Blossom, except for one evening I was ok there too. I walk everyday for an hour, or more. Sometimes I come back from the walk still aching, but energised and coping. Other times I struggle to walk. I avoid planning anything in case I can't do it – I hate letting people down. The level of aching does go up and down. I have had periods where it is only just there in the background and I have been able to function pretty normally. Then it all comes back again and I have to live, as now, day to day.
So in short Thursday's sentence left me feeling tearful, and generally pretty hopeless. I was left with an illness, disorder, whatever, that was making my shrinking life hell and although it wasn't causing me any damage and wasn't going to kill me there was no indication of how long it was going to go on for. Interestingly my cousin who has Hashimoto's – also had M.E. We hardly ever speak though . . . Her's lasted two years.
I have started to read my self help manual and so far I am already doing all the self help things they suggest. And have already found out that resting actually seems to make my symptoms worse. Whereas generally I can push through, there are times when I have no choice but to rest. A nasty quirk of nature is that my illness, as with many illnesses, it causes sleep disturbance and like last night once awake the pain keeps me awake. Then I am tired as well as fatigued the next day which means I don't cope as well. I am very reluctant to take pain killers as at one point with my migraines I was taking 15 paracetamol and codeine a day – usually three every three hours when I had a migraine – I don't want to go down the addiction route again. I save them for when things are really bad.
So this was where I was last Thursday at stage one – through the weekend I was rapidly to go through other stages . . . . but will tell you more about that in the next few blogs.
P.S Today is the day I joined CL a year ago year!!!!!!
COMMENTS MOVED OVER FROM NOW DELETED HEALTH BLOG
It'd difficult to know how to comment, except to say that you are so constantly cheerful, amusing and such a good Headmistress, and also going through all that too. Very brave.
19 March 2008 06:56
Thanks ED - sorry yes I think alot of people are finding the same - that it is difficult to know what to say - the blog is being looked a,t but no-one is commenting.
For my part it is something I have been going through for years now and I needed to write it all down and my process of working through it all and how I am coping. I want to get it all out of my head and down on 'paper' and also to share it in the hope that it will reach out to someone. Gawd that sounds terribly noble - but you know what I mean.
19 March 2008 07:10
WW If it does turn out to be ME there is not stigma about it nowadays. It was years ago that it was called, rather unkindly, yuppie flu, and then only by the really ignorant.
I have know children with ME and there are a lot of things that a person can do to manage the illness, but I am sure you know that as well as anyone.
I have no suggestions to make it better, but i guesss cyber friendship won't make it any worse. So lots of love LWB
19 March 2008 11:55