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11 May 2010 @ 01:09 pm
M.E. Awareness Week (and my bit...)  
Well, ladies and gentlemen, it's M.E. Awareness Week. What does this mean? Basically, it's a week in which various charities, including  AfME and AYME (Action for M.E. and Assocation of Young People with M.E., respectively) and their members go out into the public arena and discuss what life is like for the average sufferer. Alongside this, it raises money for relevant research, charity services and local support groups. When I was sixteen, I decided to discuss M.E. on a regional radio station in order to boost awareness. It got a lot of positive feedback, and many of my family and friends became more aware of the debilitating nature of the illness I had suffered from for such a considerable portion of my life. Here, in essence, I am going to tell you all about how I got diagnosed, some of the obsctacles I encountered and, above all, the impact it has  had on my day-to-day living. If you aren't interested, don't read it. If you'd like to know about something that has shaped me and made me the person I am today, continue on. It's behind a cut, as I have a propensity to ramble on...

I was diagnosed in May 1999. It was simple luck that led me to a Paediatrician who specialised in M.E. Had it not been for him, I would've been placed under the care of Social Services as a victim of parental neglect (not uncommon, unfortunately). I originally became ill in October 1998, but had experienced a wealth of M.E.-related symptoms up to a year before then. At 10, I was suffering from chronic migraines that left me exhausted, slurred my speech and destroyed my short term memory; when I turned 11 and started at a local high school, I developed a nasty stomach infection. At first, it caused cramping and discomfort but soon, as the 'infection' took hold, I became tired, lethargic and experienced agonising joint pain. This was, initially, put down to a rogue virus and 'growing pains'.  Yes, the fact that, on occasion, the pain became so bad I would simply cry for hours on end was down to puberty. Admittedly, it didn't seem too far-fetched at the time, but looking back I am incredulous that my GP could put it down to that without further investigation. Anyway, as the months progressed, I had more and more days off from school, fell behind in classwork and found myself unable to socialise.

A particular day that comes to mind is one involving myself and my friend, Kelly. We decided to go swimming one afternoon together, and took a bus into town to get to the local pool. We got in, had a swim, and after ten minutes or so, I began to flounder. Quite literally and metaphorically. I got out, waited for Kelly to mess around for a bit, and sat on the spectators bench. My head began to droop, my eyes grow heavy and my limbs weighed me down. I struggled to talk properly, slurring my speech and, within moments, I had a massive migraine. The sunlight hurt, sounds made me shudder and, most prominent of all, hypersensitivity caused my muscles to flinch at human contact. Even being brushed past caused my body to jump, as though a thousand bolts of electricity had shot through me. It was awful. I got home, Kelly sat looking at me with her head cocked to one side, trying to comprehend the state I was in but even I didn't know what was going on. Mum bustled about, covering me up with a blanket, giving me something to eat, and handing over painkillers. It was just a migraine, she said, and I'd get over it in a little while. True to word - within an hour or two, I was back to my 'normal' self. A couple of weeks later, I was sent home after virtually collapsing during class one morning and, eventually, Mum started to nag my GP into getting me a referral. Unfortunately, what we didn't know was that he'd been in contact with a counsellor I'd been seeing at school and they had openly decided I was simply a product of my own Mother's insanity, and I'd need to be taken out of her care if we didn't attend a family meeting. She was causing my health problems.

With that, I had a new Doctor in a different surgery. She saw the problem straight away and sent me for blood tests. A few months later - lo and behold, I had this strange, virtually unheard of condition called M.E.

You might say from that moment on, my life was changed. In actuality, for the first year or so, I struggled against this so-called illness and dragged myself to a new high school part-time. I would grit my teeth some days, determined not to admit failure but, by Year 9, I was incapacitated beyond belief and on walking sticks. I stopped leaving the house, developed other health problems and eventually, was so isolated I stopped answering the phone, and resorted to writing to friends I'd gotten in contact with through AYME. My symptoms weren't as bad as they could have been - I knew of much worse, and it scared me - but I developed some unpleasant issues that left me embarrassed, exhausted and sick of my own body:

- Tiredness
- Joint pain
- Headaches/migraines
- Nausea
- Irritable bladder; I couldn't leave the house without being ensured of a toilet in the nearby vicinity. I constantly needed to go, and it was agony.
- Irritable Bowel Syndrome; I spent weeks constipated, then I would double up in agony as my body refused to keep anything inside. Again, it made going out exceptionally difficult.
- Short-term memory problems
- Depression
- Period problems; I stopped having a period for seven months.
- Psychological issues that are part and parcel of the average 14 year-old being trapped indoors: eating disorders, social awkwardness/anxiety, panic attacks, Obsessive-Compulsive Disorder, controlling tendencies, anger and fear of the outside world.
- Muscle twitches/nerve pain
- Massive sleep reversal

I was on countless tablets, and forever chopping and changing my dosage in order to find the most suitable amount. I was put on Melatonin for my sleep pattern and it caused such damage when I eventually came off it, I refused to go near another sleeping tablet. I have yet to submit to that, and would rather spend days awake or on little sleep than ever, ever get addicted again. At this point, due to muscle weakness, my Hypermobility Syndrome kicked in properly; I would dislocate, slide about, and worst of all, the discs in my spine would wiggle and pop when I bent down, or leant forward. I could grab something off the floor and find myself fixed at a right-angle, unable to move back into an upright position without a very distinct shredding sensation.

Eventually, after a stay in Hospital (part gastric infection, part sleeping tablet withdrawal), I decided I wouldn't struggle against myself any longer. I was 15, and I wanted so many things in life but I knew I needed to reassess my health and work with what I had. I stopped high school, home tuition (and boy, did I have some insane tutors...) and put a halt on any activities guaranteed to exert my body beyond capacity. Instead, I took up simple things: I sewed, I read, I listened to music and I started emailing other people with my illness. I dabbled in web and graphic design, commenced blogging through Diaryland and then, through Livejournal and eventually, found myself able to manage college part-time at the age of 16. That's not to say I didn't have problems. Once I'd gotten over the very worst of the physical issues, I had to combat the exhaustive social displacement I'd experienced throughout all of it. I didn't know how to talk to people properly, still refused to communicate on the telephone - other than text, if I could - and backed out of meeting up with people at the last minute, through sheer fear of talking too much, entering into uncomfortable situations (drinking, smoking, hanging out with boys) and I couldn't bring myself to really connect with any one person. I felt as though I let a lot of my friends, at the time, down. However, on looking back, I knew I couldn't fix myself and pretend to be a healthy person without, first, understanding the nature of the illness I still suffered from but managed with a much better attitude.

I guess it wasn't until this time last year that I knew - I knew - I needed real, solid help. I'd taken overdoses, self-harmed, sobbed away days and nights because I mourned for the loss of my younger years. I had no real sense of self, had never understood people my own age and continually ached to go back in time and rewrite the past. Now I realise I have no other choice than to accept my circumstances and be the Kim I am right now; sure, she's not perfect, and she's anxious, a little OCD, and occasionally, there's a lot more talking than she's entirely entirely comfortable with but she's me and I am her. Had it not been for my illness, I may not have discovered the music I love now, the literature I adore, the passion I have for mad hair colours and eyeliner, the people I am close to or the experiences I am stronger for.

M.E. is an illness that turns your life on it's head. You will never be the same for it, but if you choose to remember that there are people who care and that life is about the simple pleasures, you'll be enriched and happier for it than stuck in a bind of self-pity and misery. I don't preach about knowing what the worst of the worst days are like - some of my friends have been tube fed, carted off to Psychiatric wards, developed life-threatening illnesses and, yes, people with M.E. have died because their body can no longer support itself. But, in telling my story to you all, I'm allowing you to see a piece of myself that few have ever had the privilege of. My parents know of it, some of my closest friends and a few people who have asked out of concern for their own health. And yes, it's a relapsing and remitting illness, and I am in the middle of another relapse but, my goodness, I have gone through a lot more than the average person and I'll be damned if I'm going to let this illness strip me of the life I've carefully, tirelessly built up for myself. If you know someone with M.E., admire their strength, their resilience, and let them cry when they need to cry, or spend their energy stupidly when they just need to get out of the house. Keep in touch with them, let them know you care, and offer hugs or an ear. It's a lonely condition, it destroys families and alienates friends and it needs as much awareness raised as possible.

There you have it. My little piece. As always, if you have any questions - ask!
 
 
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Trialiatrialia on May 11th, 2010 12:22 pm (UTC)
*hugs you a lot*

I hope I don't come across as being self-centred when I say this, but I want to tell you something:

What you did at 15 is more or less exactly what I'm having to do right now, and so many people, even those I love (and some mutual friends), don't understand that. I'm so grateful to have a friend as awesome as you who can, even though I feel bad that I can't help you more. I just want to tell you that. Out of all my friends, you're probably the one who is most familiar with what it's like to be me the way things are right now.

Hang in there. *hugs* The relapse will pass, and I hope sooner rather than later.

Thank you, again, for writing this.
...oh_kimberley on May 11th, 2010 12:26 pm (UTC)
It feels exactly the same for me - you're the only person who knows what it's like, and yes, there are still plenty of people I know who see it as sheer laziness and a lack of 'get up and go' but, as I cheerfully point out to them, when your 'get up and go' has 'got up and gone' before you've had chance to grab it, you're a bit scuppered. They can't argue with that!

You hang in there too, sweetie :). *massive squishy gentle hugs*
thedinster on May 11th, 2010 12:51 pm (UTC)
Reading this made me sad :(

Growing pains? Insane mother? That fucking makes me livid - what idiot doctors!! They should be fucking fired.

Also, you are an incredible, strong and positive person, to have gone through all that and to be how you are today. The first couple of times I met you, I knew you had ME because you told me, but I would never have said you spent much of your youth so ill and isolated and miserable - you're an interesting, fun, strong and positive girl, a good friend and have a huge personality! I admire you, big big kudos and hugs.

xXx
...oh_kimberley on May 11th, 2010 02:20 pm (UTC)
Apparently, my case was pretty mild in comparison. I've known friends who got carted off by Social Services, heard stories of kids being thrown into pools to 'scare' them out of being ill (in Hospitals), and admitting others into Psychiatric wards for anorexia when they've simply been too tired to eat. It's grossly misunderstood but it's improving bit by bit. One day, I hope, they'll know what's caused it and how it can be treated...
thedinster on May 11th, 2010 10:27 pm (UTC)
Scare them out?? omg :( did they drown?
moomin_puffinmoomin_puffin on May 11th, 2010 07:48 pm (UTC)
Much love for you

huggles
Brent: Mostuncertain smokingmostuncertain on June 4th, 2010 04:53 am (UTC)
want top be friends?