Growing up I did not realise I was different from any other child, just that I was unlucky in catching most of the 'bugs' that went around. This did mean missing school which I was not happy about however I did not mind too much as I knew I would spend the day on the sofa, wrapped in a blanket, a big bottle of lucozade, bag of sweets and my favourite Disney movies...... not too much has changed there!
It was an accumulation of little things that started to make me realise. The first one being that none of the other children were allowed sweets when they were ill nor were they off school as often as I was. I continuously had tonsillitis and eventually had my adenoids removed. I used to go through phases of what my mum called 'growing pains'. Mum would have to massage my legs as I would cry with the pain. I still get these and obviously I am no longer growing. It is a build up lactic acid in the muscles which is one of the traits of MCAD.
I also continuously had terrible ear infections and bad hearing. For years I was taken to and from the ENT specialist. They put gromits (small tubes that open the ear canal) in each ear, I had to sit in one of those horrid booths and click a button every time I heard a noise (I am certain this has given me mild tinnitus) and constantly had magnifying glasses shoved in my ears. After approximately 7 years the diagnose 'she is probably just daydreaming'. Really????
I have recently learnt that specialists believe people with MCAD are susceptible to inner ear problems (I agree) and degenerative heart disease (I damn well hope not).
The second realisation that I was different was when I reached the end of Primary School and as a treat the school would take the 'Leavers' on a week away. My mum sent my paperwork back with lots of forms and on the day of departure I was given lots of energy sweets, as were the Teachers. Throughout the trip the Teachers were constantly asking me if I was OK. I thought there must have been something wrong with them to keep asking me.
It was at this point I was told that I had MCAD and that it meant I was different but I did not understand why. All I knew, keeping eating sweets.
As I started secondary school and puberty set in (what a pleasant experience that is!) for the first time I started to notice I was different. As your body changes and your brain rewires itself for adulthood a lot of energy is used up. I became easily tired out. I had to wear a Medic Alert bracelet for the first time. Teachers would tell me off for wearing jewellery and then when I showed them what it was, the other girls would make a fuss. I had to keep energy tablets in my bag, the other girls thought these were sweets and would harass me to have one. In the end I became so conscious of being different, I dumped the sweets and took off the bracelet. Once at school my reserves were so low I asked friends if they had any food they could give me. No. I asked if they could take me to the shop so I could buy something to eat. No. I slumped in a locker room and cried, barely enough energy to lift my own arms. I did not know what to do. I called my mum, who called the school. A teacher found me and gave me a cereal bar.
That was a traumatic experience.
It was at this time also that I went to Cardiff University Hospital which has a Metabolic Genetics department. Here I met my Consultant and Dietician, who thought it would be a good idea to tell me, at 13yrs old, 'when you have a baby you can be our Guinea Pig'. WHAT??? That has forever haunted and frightened me. I have 'sacked' them now. They finally got the hint that I would no longer attend the appointments. On every occasion I have been ill and the on-call Doctor has tried to contact them for help, they were either unavailable or not there at all. My Dietician told me I could not eat Coconut. I asked why 'because your not supposed too'. Wow, thanks. That's a great answer. They were more concerned about taking samples of blood, trying drugs, measuring this, that and everything else but they could not offer support and help to me. I think I will stick with Mum thank you.
As a teenager I had/have terrible skin and cramps were a constant problem. I was told I would grow out of both. That was 15 years ago. I am trying my second treatment for Acne and have to avoid certain foods and have an implant for the cramps. I believe underlying all of this is the MCAD. If it can cause problems in your inner ear why not your skin, digestive and reproductive organs? I am the only member of my family past and present, to have had the problems I have. Usually these things are hereditary.
Every month like clockwork us ladies have a great time.....not. From the age of 13 - 24, I spent one week each month lying in the bath tub with my head over the toilet throwing up bile as there was nothing else left in me. I would be as white as a sheet, sweating, weak and exhausted. That works out to be approximately 572 weeks or 4004 days vomiting. I had been assessed by almost every gynaecologist in the county, given every type of pill and pain killer. Nothing worked. Again I was told I would grow out of it. This did not happen and each time I would almost breakdown crying at the hospital. They did not understand that with MCAD it was dangerous to my health to be this ill each month. Some months were so bad my eyes would glaze over and I had not enough energy to support my own head.
After years of my constant campaigning to the doctors, a new treatment came in. Success something seemed to work. Then as always the cramps, nausea and lethargy came back. This time the diagnosis was IBS. Bollocks to that. It has to be the MCAD. It does not take 14 years to diagnose IBS. This just proves the point that MCAD is still very unknown. Guess what? The cramps and nausea have still not disappeared but are not as violent as they were.
Starting University and leaving home was the hardest thing I have ever done. The first time I had to look after myself 100%. This was the second time I trialled the drug 'L-carnitine'. It didn't work. When my Mum and I were filling out all the paperwork, we went into great detail about my condition. It was decided by my local council that i would get and extra £30 a week to help cover the food I needed. They also classified me as Disabled. I do not remember filing out that part of the form!
The following year we repeated the form, as you must, only this time it was decided I was not disabled and that I was entitled to no extra help. I am not quite sure what changed, it certainly was not me.
I found at University I was met by ignorance when it came to explaining my condition. The amount of times I have been asked 'Will you die?'. Firstly, that's rude. Secondly, yes I will, as we all will. Again I learnt the best thing to do was keep it quiet and get on with it. This led to my Mum and Step-dad driving to my University to bring me home. I became depressed I suppose. There I was trying to make my own way and failing miserably. I thought I would never be able to stand on my own two feet. I was signed off my course and I took the decision to quit, come home and start over.
I still made a lot of mistakes and tried to push myself so that I could keep up with my peers but my body could not handle it. It took almost 6 years of learning about myself, my limits, my alcohol tolerance, my body's warning signs, to finally be comfortable knowing that I can deal with my MCAD. I still have moments of worry but I have learnt to accept that I am different. I have learnt that people are ignorant of things which are different and it is my responsibility to educate them.
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