• Anna - The M.E Years

    I'd always been on-the-go. For as long I can remember I'd worked during the school holidays, even before I was 16, helping out at a holiday camp for children. Looking back that means I'd never really had a proper break.

    I was the sporty one at school, joining any club that was going. I was in the school plays and music concerts too. I also did well academically. I was 'the-all-rounder' apparently.

    I graduated from university in July 2010. I did a three year History degree but also worked as a nanny during my final year, making the two hour commute to university for the few lectures I had. Two of the three children had special needs and so nannying was full on.

    I finished work at the Summer Camp in August, having done six weeks of solid work and two of those weeks were one-on-one with a child with special needs. We then had a weeks family holiday in Majorca. We were all exhausted after a Summer of work and I don't remember feeling particularly worse than anyone else. Looking back though I remember feeling like I was on my last legs. I certainly wasn't myself.

    It was the first week of September 2010 when things kicked up a gear. The symptoms started: neuralgia pain, visual disturbances, fatigue, grogginess, fogginess. I knew the doctors would send me to the opticians so I made an opticians appointment first. Friday 10th September. That night I had a night out with friends. I now see it as my last night of freedom. I carried on with the nannying while looking for full time work and helping out with my parent's business. Then on 25th September I woke up with a hangover from a quiet(ish) night before. That hangover has never left. I'd just started a job as a respite carer for a teenager with tubular sclerosis. I only managed two shifts.

    It was the Tuesday after that it hit me that something was terribly wrong. I made an emergency doctors appointment because the symptoms were so overwhelming I couldn't wait. The fatigue and the heavy legs was so intense. The doctor was lovely and sympathetic. He asked if I'd been abroad recently. Yes, I said, where I'd been bitten and had some horrible mosquito bites that seemed to swell up. He suggested a virus and told me to come back in a week.

    The next week I saw a different no-nonsense doctor who sent me for blood tests. Now I can be a bit of a wimp so the fact that I actually marched myself to get my bloods done straightaway (by myself) highlighted how poorly I really was.

    The next week I went back to see a different doctor. I was given antibiotics. If memory serves me right my blood results showed a higher white blood cell count. My body was fighting something. The antibiotics didn't work. I went back to this same doctor. She referred me to a neurologist and back to the opticians as she was worried about my eyes. The optician found nothing. The referral came through for mid December.

    By is time it was October. On the 8th October I drove for the last time. I now felt too ill and unsafe. My arms and legs weren't strong enough. I therefore couldn't do my nannying job so my mum had to step in and help me out. (Eventually I had to give up completely. It broke my heart.) Friends ferried me to the doctors. I slept while the children were at school and then went straight back to bed after they'd gone home. (I was having to look after them at our house with my mum's help by now.)

    It became clear that we couldn't wait until December for answers. My walking was incredibly slow and unsteady. I could no longer use the stairs so a bed was made on the dining room floor. The words 'brain tumour' were mentioned because of the pressure behind my eye. My symptoms matched those of M.S sufferers and brain tumour patients.

    I went back to the same doctor who'd referred me for the third time in as many weeks. All she could do was refer me privately. My grandparent's said they would pay and we got an appointment for November.

    The next week we went to see our family doctor for peace of mind more than anything. He said whatever I had wouldn't worsen in the time I had to wait to see the neurologist. We happened to bump into a family friend in the waiting room on this occasion. He is a cancer survivor and despite all he has seen and been through he said he has never seen a person looking poorlier than I did that day. I could barely speak or walk.

    In October half term we went away as a family. My extended family had a huge shock at the state of my health. That week though I somehow managed to climb to the top of a waterfall! Alas I could barely function the next day.

    On the 18th November 2011 I was diagnosed with Chronic Fatigue Syndrome. The experience of being in a private waiting room with leather chairs and coffee machines while the NHS patients sat behind a screen on old, plastic chairs was not my favourite. A half an hour appointment cost so much money that I actually rang to check they hadn't charged us twice. The neurologist didn't think I needed an MRI and advised my GP to prescribe me amitriptyline to help with the restlessness and inability to sleep. He advised me to 'have a quiet Christmas' and see how I was in the New Year...

    Nobody knows the cause of my M.E but it is thought my body was just incredibly burnt out after years and years of working three jobs at once and studying, etc...I personally think those mosquito bites have something to do with it too.

    My 22nd birthday came a few days afterwards but I have next to no memory of it because I was so ill. I saw my family GP again who referred me to the local CFS/ME clinic. I saw them in January 2011. By this time I'd worked out for myself that I needed a better routine and to start retraining my brain after it had apparently shut down. I stopped myself from sleeping in the day and got changed out of my pyjamas to remind my brain that sleep was not for daytime.
    It was incredible to talk to an M.E specialist. I wasn't going crazy! These symptoms were real. I was enrolled on their eight week group therapy sessions.

    Now this was a huge shock. The sessions were two hours long. I was a million times more severely affected than everyone else there. I was so weak I couldn't even get the lid off the pen to write my name on the name badge they gave me. The severity of my condition shocked the occupational therapists too and they wondered if I would manage. I was so upset and ill after that first session that I nearly didn't go back.

    The clinic introduced me to activity diaries and target sheets. I've stuck with them and can look back and see the huge improvement I've made so far.

    After following the advice given in those eight sessions to the letter I had a relapse in the Summer of 2011. The clinic rang when I didn't manage to make their catch-up appointment in August. They said they'd expected a relapse due to the severity of my condition but that I was doing everything correctly. After a brief time of being able to use the stairs I ended up back in the dining room, this time with a proper bed and furniture. This relapse was severe. I was spoon fed and had help to dress and wash, even to clean my teeth. I stayed in bed or got wheeled to the living room or the bathroom.

    In October 2011 things were starting to pick up again. An M.E specialist physio was sent from the clinic to help build up my strength again. I was given the simplest of stretches to try once a day and the gradually build them up. By November I was able to sleep back upstairs in my room. I've managed to stay up their since.

    Unlike many others I haven't picked up many coughs, colds, bugs or viruses. I've had one stomach bug that was too horrific for words but other than that my immune system is on such high alert constantly that I avoid the germs. Like many others I have experienced ignorance from the very medical professionals who are meant to help us. The benefits system has been more than just a little obstacle too.

    In October 2012 I hit an all time low emotionally. I just couldn't do it anymore. I couldn't deal with having to pick myself back up after yet another dip in my health. What kind of life was it to be stuck in bed and feeling so incredibly poorly? My good old Mum set me straight once again though. She told me "Tough. You haven't got a choice." As always, she was right. So I started a blog to help educate my loved ones and to get things off my chest. It has given me a bit of purpose back.

    I have seen progress in the time I've been ill with M.E. I have started to get back to driving again and I'm ticking mini milestones of my imaginary to-do list. I can sometimes boil my own eggs for lunch and make my own cup of coffee! Simple pleasures. As of November 2012 I am no longer classed as a severe sufferer. The CFS/ME clinic are delighted with my continued improvement. It is always one step forward ten steps back though.

    I try to look on the bright side and live in the here and now. The future seems too bleak to look at it indepth anyway. I am lucky in so many ways. I can always see the silver lining. I have an incredibly supportive family and group of friends. These 'M.E Years' couldn't have come at a better time. I'd got my degree, moved back in with my family and hadn't yet entered full time work. I have a new found appreciation for everything. There have been good things to come out of being chronically ill and, although they don't outweigh the negatives, it is important to acknowledge the good.

    I'm still finding my feet. It's a huge learning curve but it has helped to meet people online who are in the same boat. The road ahead is long and my life is not going at all how I had planned or how I imagined it to be, but I am getting there. Very, very, very painstakingly slowly but surely.