There are many speculations about why someone may develop M.E ranging from lifestyle to genetics. Visit www.supportme.co.uk/causes here for more information regarding the research findings into the causes. I'll also go into this in a future post, so you can all do some homework beforehand. In the post 'where it began' I mentioned my rather large set of notes, in fact they are now so large that I am now onto a second folder. There are people in their 90s with smaller files than mine and good on them. The reason I mention this is because it's intriguing to know whether any of this could have had any affect on why I developed M.E. So in this post I'm going to talk about the physical aspects of my past health. Brace yourselves.
Other than being born my first experience with hospitals came at the age of 6. It was the eve of my school Christmas concert and I was all set to be a squirrel, yes a squirrel! Apparently us Welsh have our own version of the Bible where squirrels are an important part of the Christmas tale. Come to think about it I think it may have been Red Riding Hood. I came home from school and was getting into my squirrel costume when my mum noticed that my ankles were bright purple and swollen and when she took me for a wee it was completely red, so she got a sample and rushed me straight up to the doctors and then the hospital. Of course I was just disappointed that I never got to show the world just how good a squirrel I could be. Thinking back I must have been in agony but of course at 6 you don't know any better.
I was diagnosed with Henoch Schoenlein Purpura, http://www.nhs.uk/conditions/henoch-schonlein-purpura/Pages/Introduction.aspx here which is where the white cells in your blood start attacking the red cells; hence the big purple patches and it also affects your joints and stomach. As I say I was 6 years old so I don't really remember much about that time, apart from being sick all over my doll, wanting to always play with the dolls house and getting upset if someone else had it, my sisters visits where she would draw me pictures of sheep with Wellingtons on, riding skateboards. I thought she was the coolest person ever and the other thing I remember is some boy became my mortal enemy for stealing my wheelchair and taking it for a joy ride. However my my Mum tells me that I was not a well bunny at all. I remember being allowed home for Christmas and got absolutely spoilt rotten, I got my very own dolls house but it was a Sylvanian families one, now that is being spoilt. Even back then I knew that they were pricey so I was very pleased. Of course Father Christmas had footed the bill anyway.
Over the next year or so I was to and throw from the hospital. I remember getting cystitis a lot and I couldn't keep anything down or in. I was constantly violently sick or had diarrhoea. My Mum had to make makeshift nappies and carry towels with her if we ever needed to go out. Mum worked at home fortunately but I'm sure the children she looked after didn't really appreciate being puked on. So my sincere apologies. I was so thin that I had to have those build up milkshakes. In time though I got better and went back to school which was quite daunting, it was almost like starting all over again.
Moving on seven years and apart from needing an x-ray on a sprained thumb and all too many hospital visits to relatives I had little to do with hospitals, until that is one day at the age of 14 I came home from school feeling sick and had blood in my urine. Of course the first thoughts are the Henoch Schonlein is back but as it turns out it was an ovarian cyst that had heamorraged. I tell you it's not very often the gynecologist visits children's ward but he explained that he would put me on the waiting list to have the cyst removed.
To cut a long story short, after the operation to remove the cyst I was still experiencing chronic abdominal pains and going to the toilet a lot more. As it turns out they also thought that I had irritable bowel syndrome, which had probably been aggravated by the cyst and ibruprofen. Ever since I have had a trouble with my stomach and bowels. I have seen several gynecologists (I know they don't do bowels but they were looking for other causes such as further cysts or endometriosis), gastroenterologists and dietitians. I have had a camera up and down and all around (the less said about that the better,) scans, x-rays and non of them ever came up with anything conclusive other than the IBS and yet I was still in pain. So all these appointments and tests constitute a large section of my notes.
When I had the severe abdominal pains two years ago and was admitted to hospital 6 times (creating more notes) they decided to really push the boat out to try and get an explanation that was more consistent with my symptoms. Afterall each time I was admitted I had to go through the same rigmarole of them thinking it was my appendix and being dosed up on oramorph. I had the MRI scan that I mentioned and a capsule endoscopy. MRI scans are pretty scary but I wasn't as nervous for this one as I'd had another in the past, however when they scan your small bowel you have to drink this medication, 1 and a half litres of the stuff! Now it says in the guidelines that is a very slight laxative but what it does is help them get clearer images of your dietary tract, however of course my stomach being the hyperchondriact that it is decides that world war 3 has struck and everyone must evacuate. The doctors said they'd never had that happen before but then again that is why I was having the test. Of course I needed to not lose any more of the medication for the scan to work but every time I went to get on the scanner I'd have to run off. In the end I had to wear one of those big granny pad things like a nappy and thank god managed to get through the test. I think it was the longest half an hour of my life. They also have to strap these imaging plates to your stomach so you are literally strapped in. Not good at all and apologies if I've grossed anyone out. Trust me though! Capsule endoscopies are quite rare as most conditions can be confirmed through scans and other endoscopies but basically what it is is a capsule that you have to swallow that has an imaging device inside it and it photographs the inside of your digestive system. How very sci-fi. Tom I know you will be having film ideas. The capsule actually flashes too, which is rather disturbing, but it just means that it's working and sending information to the belt pack that you have to wear, which is attached to lots of patches and wires on your belly. It's really quite heavy and all very weird but it makes for an interesting tale. You have to wear the pack all day and then it takes a few weeks for the results to come through as it takes thousands of images which all need reviewing. When the results came back they showed I had a hiatus hernia and some ulceration of the small bowel, which just so happened to be in the 'large area' between the gastroscope (the one you swallow) and the colonoscopies reach.
It was a huge relief to finally have answers and luckily I can manage them with medication. My gastroenterologist at the hospital did say though that he saw no reason why this should be causing me pain! What?! In fact his letter to me said that the findings of the capsule endoscopy where 'inconclusive' and yet he'd told my GP about the hernia and ulcers. I phoned up his secretary and even she was baffled as she'd seen the images. Sometimes doctors baffle me but thank goodness they let me have the further tests and in my eyes that's what I have and had been causing the pain.
Physically I have also had to see the rheumatologist because during my undergraduate degree I had a lot of pain in my wrists and lost some grip in my hands. No naughty jokes please! So this meant more scans and x-rays and a nerve conduction study to test for carpal tunnel syndrome. This test is another strange one, so I'll give you the details. They place electrodes at specific parts of your arm and then run a small current through it to measure how long it takes to get from one point to the other, to check for nerve damage or blockage. This is really strange as when the current goes through your arm twitches and at one time it makes you wave like the Queen. However all the tests came back clear, so they sent me for occupational therapy to teach me how to do simple tasks easier. Like using a thicker pen to write with so your hand isn't as cramped up and using both hands where possible to spread the weight. Soon enough though they started to improve. It was all very strange but I guess that's me.
So there are a few things there that might have contributed and some things that are otherwise unexplainable. It would definitely be interesting to know if anyone else that has M.E also had Henoch Schoenlein when they were younger, as it implies a weakened immune system. All together I think it's definitely left my body weakened and it always seems to have been long illnesses that as time progressed I've just tried to live as normally as possible with. At one point I even put back an operation as I didn't want to get the lowest mark for an assessment and let people who hadn't been showing up get a better grade than me. Maybe this has had some effect too as I've not been allowing my body to recover and not listening to the pain signals; switching off that signal from brain to body that tells you too slow down and rest, which is a major part of having M.E.