What is M.E?

Myalgic Encephalomyelitis
(My = muscle) (Algic = pain) 

(Encephalo = brain) (Mye = spinal cord) (Itis = inflammation)

I have a chronic illness, I am disabled.

M.E. took away the opportunities of youth. While I should have been going out, having fun, experimenting, I was trapped in a body on fire with pain, barely able to stay awake. When I did manage to do something 'normal' what people didn't see was me afterwards behind closed doors in tears. 

I was diagnosed in 1998 at just 18 years old I am lucky that I got the message to rest and that I had parents who supported and cared for me. It was the time before such easy access to the internet - we didn't even have a home computer, seems like a life time ago. I was isolated in an illness that I didn't understand. My doctor told me about the ME Association and they became my window into this new world. My Mum and I learnt so much and I greatly value the support I received (and still receive). From learning the importance of not 'pushing through', the need to rest, pacing and even the stories of hope - for some it was possible to go on an live a near normal life. 

I am one of those lucky ones - sadly not everyone is so lucky. Around 25% of M.E sufferers are trapped in pain and suffering - light, noise, heat intolerant - locked away in darkened rooms. Unable to swallow, eat, move. Invisible. And then there is the largest group, trapped in pain and exhaustion, barely able to cope day to day - invisible. Us 'lucky' ones get to go out and work and do some things but we too are invisible. 

I am in pain. Sleep is nice but I would love to wake up and not be tired. A day without a headache would be good. Living without fear of getting an infection would be nice. To never have another allergic reaction would be awesome. To not have the threat of anaphylaxis over my head. To not be intolerant to the medications that might help me. To not having to sign to pick up a prescription and then again to get it filled just because its a controlled drug. To not hear the words but you don't look sick. I don't know what sick is meant to look like. And even worse the well meaning how are you feeling today, any better? 

By all means ask me and well us how we are feeling but maybe ask if there is anything you can do to help to make today just that little bit easier. 

And so I am the crazy one embarking on a highly physical challenge that actually and I am not going to lie could cause me to relapse and make me very sick. 

So why am I doing it?

It is a highly personal challenge - I'd be doing it anyway but if I can raise some money and awareness along the way then woohoo.

When I was 18 I was largely house bound, sometimes bed bound. With support, rest and pacing I was able to attend university when I was 20. I was then able to enter full time employment. I have never been alone I have always had support. I was then able to leave home. All was going well until 2010 when I had the beginnings of a stress induced crash, I dropped to part time, had extended sick leave, tried to return to work (in not the most productive or helpful way) and eventually lost my job. 

I thought I knew how to deal with my ME and I did, some things I did right, some things not so right. But what I hadn't taken into account was changes over time and re-learning how to deal with things and that sometimes we put the needs of others before our own, but it was one of those major life events and I wouldn't change what I did I can never regret all the time that I spent with my Mum while cancer took her life. But I wish after I had spoken out and been selfish and taken the time that I really needed. I hadn't really been listening to my body any more - it took some pretty serious chest infections, paramedics picking me off of the floor, being barely able to walk and a serious episode of anxiety to make me listen. 

It wasn't the pain, the exhaustion or the cognitive issues (brain fog) that scared me the most it was losing most of my mobility - though I have to say almost setting fire to the kitchen was a low point. Walking has always been a constant for me and activity that I loved. A severe back spasm was the reason and that was that. But I thankfully was able to get a place on a back care and pain management course and my goal was simple - to be able to walk my dog. 

And I did it. It was hard work, it hurt, but I did it. Then I was brave and asked the doctor for more physiotherapy, I also have a lot of joint issues, and slowly I learnt that increasing my muscle tone to get my muscles to support me like they should helped to stabilise wonky joints and reduced pain. I have had loads of physiotherapy in the past without success but something this time round seemed to make it all click and make sense. 

And so my greatest balancing act began - combine the need for physical with the need to pace and rest (I don't always get it right).

I am not even sure what made me thought of running. I was always told that I would never be able to run. I guess part of it was a stubborn streak (I get that from my Mother) and well it's meant to be free. I took my first steps 12 July 2013 - 'spur of the moment decision wearing impractical shoes (fitflops) - run /walk. I didn't to much but I felt that I could do more'. I carried on for a month and actually got up to around 6 minutes, but it was boom and bust and I never a plan or a real way to measure my progress and so I gave it up. 

But the idea was still there. When I lost my job in January 2014 I knew that I needed to build my stamina up again to have a chance at working again and I thought well now was the time to do it. 24 February 2014 I started the NHS couch to 5k plan, the 9 week plan took me 13 weeks to complete. My goal was simply to be able to run at least once a week and honestly I did not think when I started that I would get beyond 5k or that I would even carry on once the challenge was completed or that I would be able to carry on once I got a new job. 

But I discovered that I can run further and for longer than I can walk - yes I still struggle to walk 5k (3.1 miles). 

I started a new job August 2014 and well I did not think I would be able to carry on the running. At first I did stop and then I built it back in slowly. I was very ill that winter and running took a hit, work were fantastic, we knew that a relapse was a possibility, we knew that it was likely I would get an infection or two having not been in an office environment for a while. What we did not expect was how sick I became. And I never realised how much I would miss running.  Slowly things got back under control and I was able to start running again. 

January this year I did one of the most amazing things I have ever done, I volunteered to help at a women only beginners running course - I was the tail runner (the person at the back making sure no one was left behind). I can not really begin to explain how amazing it was. It was doing this that I learnt that I could increase my distances and I got up to being able to do around 10 miles in a day over split runs. If I can do 10 miles then I can do half a marathon. So now I need to turn those split runs into a single run. 

I need to pace and rest. 

And I will do it and I won't have another crash. 

I can only do this because I have a lovely husband who looks after me, does the house work, cooks and takes away my trainers when I need to rest. I have an eager training partner - my sprocker spaniel, and I also have a very supportive running club - Notts Women Runners.

Please note:
I don't want people to read this and get the wrong idea and think ME is made better through exercise. It isn't. I know my body, I know when and where I can push or try to push my limits. I know that I have had periods when this would have been lunacy and would have made me worse and jeopardised my future.

Please don't use my experience to try and push someone who it isn't right for or they are not ready as it could further damage their health.

For people with chronic illness/disability exercise and making a positive change doesn't have to mean getting all sweaty there are many simple stretches that you can do in a chair and some that can even be adapted to do in bed (search chair exercises for limited mobility), but again I urge caution it is not right for everyone. If you or someone you care for do decide that you/they want to try and increase fitness my advice is always to consult with your doctor first.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.