Monday, 22 December 2014

Getting an M.E Diagnosis.....and how others react!

So you've been feeling as if things are not right for some time, you know that there's something wrong with you. You've been experiencing a host of numerous and seemingly random symptoms. 
Obviously lots of different scenarios and possibilities are running through your head. (Which doesn't really help matters at all!) Finally you make an appointment with the doctor to discuss what has been going on and talk about all the symptoms you have noticed.
 The doctor records what you've said and tells you that they will do some tests to see what is going on.
You wait patiently as you get blood tests done and are sent for an MRI - basically all the tests they do to rule out various possible conditions and illnesses.
 You've waited for the results to come back to the surgery and to see the doctor again, hoping that it's nothing serious, but if it is - that it's something treatable! 
The doctor sits you down and tells you that all of your tests and scans have come back clear, luckily you don't have anything fatal  - you have M.E. M.E? 
Yes, we've ruled out any other conditions or illnesses with the various tests and scans and I can confirm that your diagnosis is M.E!
I felt a short burst of relief when I heard it, it's not a terminal illness, I've not got 6 months left to live, the doctor knows what it is. Thankfully I now finally have an answer to what has been going on with my body for all this time, all of these symptoms now make sense.
 I don't know about others but I grew up as a child with the false ideas that adults knew all the answers (well, you have to learn as you grow up so surely you know everything when you're old?) and doctors know all about illness and how to cure them or at least treat them!
 Sadly, where M.E is concerned most doctors don't know all about it, many know very little about it, some know nothing about it, others deny it's existence completely and they definitely don't know how to cure or treat it!
My G.P told me that he had no information on M.E but the best thing that I could do was to go home and Google it. A strange thing to hear from a doctor. because they generally give out about patients using the internet to search for medical problems 
 I think many people look up one symptom they actually have and then come to see the doctor armed with a list of about 10 conditions that they think they possibly could have!
When most people hear M.E they recognise the name, I remember as a child hearing about M.E and the words 'yuppie flu'. Used widely in the 80's and having been born in 82 it was a term I'd heard quite a few times.
I've a vague memory of seeing something on t.v about it as a young child and thinking it was when people who worked got really tired. So I wasn't starting off with any real knowledge about it at all.
I did as the doctor suggested and looked it up online. It helped, as there were lots of things that had been happening over time that I'd not paid much attention to or would have even thought of that suddenly made sense. 
Products I'd become sensitive to, why I was especially tired after activity, problems finding words, problems with memory, always feeling like I was really low on iron. 
There seemed to be lots to explain symptoms of M.E, but nothing to cure it. I looked into the history of M.E a bit, wondering how people could feel so awful, with so many symptoms and have it compared to flu? Apart from that, my research at that stage pretty much stopped there.
I tried to explain to family and friends that I'd had on going symptoms for a while,  I'd been through various tests and scans to see what was causing all the symptoms and finally got a diagnosis.
 People asked what type of symptoms I'd had? I explained I was always exhausted, rest/sleep didn't make any difference, I'd a lot of pain, headaches. Several people said it sounded awful and asked me what the doctor had said? 
I explained to them that I had a diagnosis of M.E. I was surprised at how many people came out with similar responses. "M.E? That's that yuppie flu thing." "So your just tired?" "That's not a real condition."
I wrongly assumed that like myself they had just heard and understood little about M.E and like myself, if they found out some information about it, they would understand what it is and how the illness affects people. 
I tried to explain that M.E is a neurological disorder and has been classified as such by the World Health Organisation since 1969, it's not a case of 'just being tired'. It causes extreme fatigue, problems with memory and concentration, causes pain, problems with muscles, affects your bladder and bowels etc 
Well, I may as well have been speaking to myself. No matter what was said by me, the World Health Organisation, the NHS, GP etc - there was nothing wrong with me. 
From then on my neurological disorder M.E was referred to as 'aches and pains'! I made several more attempts over time to help them understand but my efforts were wasted and I was regularly asked; "How are the aches and pains today?"
Realising that there was no cure, I had went back to the doctor's surgery and saw several doctors over a period of time hoping that they could help me manage the pain and improve other symptoms I had. 
I was in my early 20's with a young baby, I wanted my life back. The amount of insults, comments and disbelief that I received from various doctors about a medical condition I had been diagnosed with was absolutely shocking!
"There's nothing wrong with you that getting a bit of exercise wouldn't cure" "You're depressed, a good anti-depressant and you'll be fine" "As long as I'm a doctor - you'll be in pain" "You're lying about doing nothing instead of getting up, going out and living your life" "M.E? there's no such thing"
Everything that the doctors were saying to me was wrong. I was active and independent, to the point I'd bust my C-section open 4 days after my baby was born because I didn't take doctors advice and not over do things after having major surgery. 
I was back working within mental health within a few weeks of having my baby. I was studying counselling at the local college and had started a psychology degree online as well as playing in a band. 
When I couldn't sleep I'd spend hours on the dance mat, trying to loose the baby weight waiting for my wee boy to wake up for his feed at night. It definitely wasn't a case of me lying about doing nothing! 
As for being depressed, what could I possibly be depressed about? I'd the most beautiful baby boy, my plans for work a career and a good future for us both were taking shape. 
Everything I wanted was falling into place - the only problem I had was the M.E which was impacting more on my life as time went on and making it harder for me to live my life the way I wanted.
I decided to go back to the GP who had initially diagnosed the M.E. I spoke to him about the problems I was having and the fact that I wanted my life back. 
He was very honest and said that he couldn't treat my M.E but he would do everything that he possibly could to help manage the symptoms. 
I'd also told him that I was having an awful lot of pain and using my arms to try to do a simple task like drying my hair left me feeling like I'd pulled and strained every muscle in my arms. 
He did a lot of poking and prodding at various tender points on my body, asked a series of questions and then told me that he was also diagnosing me with Fibromyalgia. 
When I asked what it was, he told me that it affects  the muscles and caused other problems but like M.E it was not terminal and not curable. 
That it would be dealt with in the same way as M.E - by trying to help manage the symptoms. So off I went, armed with a vast collection of new medications away home to get on with my life!

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