Quote of the day - "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. - Albert Einstein"
Tuesday, 22 May 2012
My partner, Mark bought me some extension tubes for my camera but the weather has been absolutely pants so not had chance to try them out. However, the sun decided make an appearance and I had some spare time so made the most of it and these are the best three that I took today
Tuesday, 8 May 2012
When you are sat in that clinical room and the doctor says 'We are diagnosing you with ME', your first reaction is 'ummm, okay then...so what do we do?' And their response? 'We'll put you on a course that teaches you how to cope with it'. Your mind races...is that it, all they can offer me is how to cope? What about all the other options that are offered to those with cancer, diabetes....don't I get more than just how to cope? It's not until you get home and read the leaflets they gave you and inevitably turn to good ol' google that you realise there are no options! At at that very moment, the one thing you had before you were diagnosed leaves you completely....Hope!
At any age such a diagnosis is difficult but as a child it's unimaginable. (I'm not saying it's harder to bear, just my experience) At fourteen, if there is one thing you have in abundance, it's hope. It's the time in your life where all your plans for your future education become important, where the opportunities to have a career in a job you've wished for all your life start to have significance and yet in that single day that started with a trip to see the specialist, your entire life is blown to pieces and you are left clinging to the straw-like strands of hope that are slowly slipping from your grasp.
It seems the turmoil I went through has faded into just a painful but vague memory now so it's difficult to put into words but I know I cried alot! Insomnia was a major issue for me so on just three hours sleep, I forced myself to school for six hours a day just so I could sit my gcse exams and not be a complete failure and then I would come home and collapse on the sofa or in bed and feel that maybe if my body just gave up the fight, it would be better than this constant battle through hell for just a tiny semblance of normality. When this is your daily existence, it's almost impossible to look beyond it into the future that still holds the possibility of being well again. It's difficult to see how it is humanly possible to take so much pain, fatigue and lack of good sleep and still live!
But as the years drift by, the education plans fall away into forgotten dreams and the initial turmoil you felt when you heard the words 'no cure' becomes a ghost of a memory. I don't remember when I finally accepted this as my life. I know hope didn't factor into it but it was a kind of resignation. There are only so many tears you can cry and so many times that you can punch that poor pillow before you exhaust yourself to the point that you fall into a fitful sleep and at some point, you accept it. You accept that this thing, whatever it is, that they call ME is always going to be there and eventually from somewhere, a little thing called hope comes back to you. It may not be hope for the future you once envisioned as a child but hope that one day you might be well enough to enjoy a day out to the seaside without being confined to bed for months afterwards or complete an evening course in a hobby you once enjoyed so much before the illness came.
It's easy for you well people on the outside to think 'Well her life doesn't look so bad' and I agree hell isn't so bad. Once all the anger and raw emotion drops away, this hell that is my life may be agonising, exhausting, humiliating and depressing but now there will always be that little cloud with it's silver lining hanging above reminding me to never let go of that tiny strand of hope because if I do, everything I have achieved despite this illness will mean absolutely nothing and in the end, I refuse to allow ME to take that away from me.
Quote of the day: 'We must accept finite disappointment but never lose infinite hope - Martin Luther King, Jr'
Monday, 7 May 2012
It's that time of year again where ME (Myalgic Encephalopathy) gets just a little awareness that is positive rather than the usual negative press the illness and it's sufferers usually get.
The photograph encompasses the main symptoms that have plagued me since becoming ill 7 and a half years ago. There are many more symptoms than just those four which range from light/sound sensitivity to nausea and dizziness. It's an illness that affects pretty much every bodily system that you could possibly think of and yet not one test done would show up that anything is wrong at all. (I promise there is a positive bit near the bottom so keep reading!) =]
I'm as healthy as can be (according to my blood tests) but inside it feels like my body is dying with every minute I spend doing something physical. My knees give way randomly, my joints creak, my muscles hold all the tension caused by the simplest of actions.
Twenty four hours a day, I can guarantee that some part of my body is in pain. Sharp twinges in my chest make me keel over and it has on occasion forced me to stop in my tracks until it passes. Nerve pain that can't be touched by any painkillers, so I just have to put up with it and ignore it the best I can. And this barely compares to what some sufferers face every single day. I'm lucky that I can still function despite the pain.
I'm lucky in that I very rarely have to use my wheelchair anymore but there are some sufferers who can only leave the house if they use a wheelchair because walking causes too much pain and fatigue.
When I say fatigue, I don't mean that tiredness at the end of the day just before you go to bed. I mean the utter exhaustion you would feel if you ran a marathon while having the worst case of flu you could imagine and no sleep for several days! It's difficult to imagine if you haven't felt it but it's what we are faced with every time we wake up. With ME, you could sleep for hours and feel absolutely no benefit.
ME is a neurological illness that affects most systems in the body though it is not known what causes it's onset and there is no cure. Many sufferers begin to get symptoms as a result of a virus such as the flu or glandular fever. 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.
I promised a positive....
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 one of 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. 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.
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.
And without my partner Mark, I wouldn't have achieved so much of what I have in the past few years. We've travelled to Prague and Venice, bought a house and almost finished the renovation. Yes, I'd have probably done the travel eventually but I certainly didn't think a renovated house would have been within reach when usually the only thing on my mind is getting through the day. If you ever read my general blog, you will know how much buying the house and making progress like that meant to me so to achieve it, is beyond amazing.
So if you're still with me, I applaud you! So back to the main point of this blog post. It's ME awareness week and if you now know more about ME than you did before and you have a tad more insight into how difficult life can be with a long term illness, then my work here is done.
If you want to know more about ME then visit http://www.meassociation.org.uk/ or http://www.actionforme.org.uk/
Quote of the day: 'Strength does not come from physical capacity. It comes from an indomitable will -Mahatma Gandhi'