Tuesday, 7 May 2013

M.E - that thing that can ruins lives

It's been a while since I posted here but since it's M.E awareness week next week I thought I'd write something now while I have time. If just one person reads this and learns something or changes their view of M.E, then it's worth it.

My nightmare started just over 8 years ago. After a severe bout of flu, I became very weak and constantly in pain. As a 14 year old, I should have been in school studying for my GCSEs but instead I was laid on the sofa with a headache so bad, the sick bucket was my companion. Pain racked my already weakened body. There was nowhere the pain didn't affect, it hurt to walk, it hurt to cough, some days it even hurt to breathe. The pain left me exhausted and yet I couldn't sleep. Fatigue came in waves. Walking to the toilet left me feeling like I had run a marathon and yet having a rest did nothing to help.

Doctors didn't believe there was anything wrong with me other than slight anaemia. I saw a number of doctors before seeing one who finally believed me and referred me.

I have questioned my sanity so many times over the years! When doctors asked me to see psychiatrists; when people have commented on the fact that I don't look ill.
Even last night after long years of pain, sleepless nights, heart palpatations, headaches, I still question my sanity!

It's hard not to wonder if maybe it is all a figment of my imagination when you have so many people telling you it's not real, so many 'specialists' saying that since no blood test shows abnormalities how can it possibly be anything other than mental illness?
When you get to the point that you no longer tell people you are ill, it's worrying! Why do I feel the need to hide my illness. Maybe it's shame or maybe just the fact that with telling people comes the inevitable questions from people who only understand what the papers tell them of it. 'Oh, so you are just tired all the time?' and 'Thats's that thing where you get tired doing things you don't want to do isn't it?'

Yes...when I spend a day taking photographs of the dogs at the rspca and walking, cleaning the kennels, something which I love, I come home and collapse. Yet I couldn't think of anything I would rather do than this. I still suffer for it, the headaches start before I even get home, the pain shoots through my spine, tremors attack my legs and I couldn't be happier that I have spent my day doing something I love.

Oh but if only some people have that choice! People have died from M.E! People don't just die from feeling a little tired after doing the washing up. People die from the ignorance of the medical profession, people die because it is too much to suffer the constant pain, fatigue, sensitivities every single day in a darkened room, praying that the next day brings just a slightly less painful day.

'M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely'. And yet there will never be a time where everyone will accept it! It's hard enough being permanently in pain without being reproached for being so. 

Every night I go to bed and even though I'm not religious, I pray to whoever the hell is listening that I will be able to get out of bed in the morning. That I'll have the strength to get through another painful day and that the pain won't drive me to my knees! 

M.E is a neurological illness that affects every system in the body, it affects different people in different ways and it ruins lives. The symptoms are so diverse that it is incredibly difficult to make sure all are mentioned but here are just a few to give you an idea of what sufferers content with every day...

Fatigue: Utter exhaustion, often to the point of collapse.

Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. Skin sensations such as skin crawling and pins and needles may be felt.

Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

Other symptoms: Body temperature disturbance, dizziness, vertigo, postural hypotension, sensitivity to light and noise. Possibility of sleep disturbance, nausea, loss of appetite, gastrointestinal disturbance, mood swings, panic and anxiety, acquired sensitivity to food, medication, alcohol and chemicals.

The best way I can describe what it is like to live with M.E is it's like living in a perpetual winter where everything is grey with flecks of colour that quickly turn to black once you admire or enjoy them.

It's very easy to focus on all the damage that a long term illness so early on in life can cause...losing friends, dropping out of education, missing out on the life you would have had if your body didn't fail you at every turn...but when I really think about it, yes I would change the fact that it still hasn't buggered off but I wouldn't change the lessons it has taught me. In the beginning I was so focussed on being alone with no friends to rely on but it made me realise that I needed to rely only on myself, no friends could get me through the agonising nights of pain and exhaustion. Sheer will and determination would!

My ideas for my future are those distant fading dreams that you can almost remember but if you don't think about it, it disappears completely. I wanted to travel the world and volunteer in far off countries, study criminal psychology and forge a career. The degree went down the pan when I couldn't cope with the workload and just to think of travelling the world is exhausting. But sometimes you have to redirect your dreams to fit with your ability. So I may not be able travel the world in one go so I'll do it one little holiday at a time and mark off everywhere I go. I'm keeping my fingers crossed that one day I'll be well enough to volunteer abroad but in the meantime, I'm content to spend my time working with the fantastic people at the local rspca and making a difference close to home.

A degree may have been too much but I've managed to complete a photography course which I didn't think I'd have been able to manage and currently studying for a Criminal Psychology diploma from home.

Also my family are completely amazing!! I imagine it's not easy seeing your child go through this illness, being confined to a wheelchair and spending days laid on the sofa because to walk around is painful but no matter what, my parents have been there for everything I've needed...to wash my hair when I'm too exhausted to do it, push me in my wheelchair just so I can get out of the house for a while and so many more things, I couldn't possibly write it all down. Without them, I definitely would not have survived this.  

Mark, my partner has been there for the past 4 and a half years. Through all the pain and turmoil this illness causes, through all the shoulder soaked nights when I question if I can really get through this. It can't be easy to live with someone who comes home at the end of the day and sometimes doesn't even have the energy to give you a hug and instead just collapses on the sofa or sits there just wincing in pain yet knowing there is absolutely nothing he can do it ease it. He is definitely one of the reasons to fight the damned thing with everything I have.

And finally comes admiration. I have met so many sufferers of this dreadful illness and what always amazes me is that regardless of how ill they are, how long they spend in a darkened room, they are always determined to survive and forever hopeful that one day they'll be pain free or even just a little better so they can spend one day doing something they enjoy.

So if you have learned anything by reading this, I hope it is that there is often more to an illness than the Daily Mail tells you. I hope that when someone, be that a friend, a family member or a new member of staff, tells you they suffer from M.E, you don't tell them 'Oh that's that tired thing' rather you ask them how they are or how it affects them. But don't treat us like lepers! We are just normal people trying to live a normal life, dealing with a little more than most.

Quote of the Day:  ''Strength does not come from physical capacity. It comes from an indomitable will -Mahatma Gandhi'