Sunday, 29 January 2012

The Silent Ilness

Since being diagnosed with ME I've done enormous research and delved into every media report/story about the illness and have campaigned to have the illness more widely recognised and after reading some of my earlier posts I'm beginning to realise how selfish and self centered I really am and for that I apologise. What I have failed to discover is that like ME there are other illnesses out there that people don't recognise or acknowledge. These are known as 'Silent Illnesses'. Its an illness that is going on on the inside of the body as well as the outside but no-one gives it the time of day. These illnesses are debilitating and hurtful and horrible for the host who have them and they suffer, sometimes in silence, sometimes with conviction and sometimes shouting from the rooftops to just cope with each day with their symptoms. I applaud these people and just because we may not look sick on the outside doesn't mean we aren't sick on the inside. So for this I am learning more about these 'silent illnesses', some more than others. I will never be an expert but I do think that if I give some time to learn more about these illnesses the way I would like others to learn about ME then these illnesses wouldn't be as silent anymore and if each of us gave some time then we can drop the silence altogether.

Some 'Silent Illnesses':

PCOS - Polycystic Ovary Syndrome
MS - Multiple Sclerosis
Mental Health
Crohns Disease
Ceoliac Disease

Blimey.....Its Been A While

Yes, it has been a while and I apologise. Two apologies in fact as I seem to recall in my last post I was going to make more of an effort to blog and I haven't. In my defence I have been settling into my new home in yet another new part of the country. Actually, that's not entirely accurate, I know this part of the country well as I originate from here but it is still a move with the Armed Forces. I have also been unwell. The ME has struck again, in fact what it did do was lull me into a false sense of security. My symptoms seemed to ease for quite a long time. I was only having one or two bad days a week which for me was pretty good but then it all changed. Those one or two bad days turned into three to four days to practically every day I would feel like crap. Socially though I was improving, meeting some fantastic people, settling in really well and aside from the illness I was happy. I still am if truth be told but I've had some ups and downs and some deep drops to get here. My health isn't improving but I'm managing it with the support of my family and the amazing friends I have made here who aren't put off by my ME. They help me, not necessarily physically in cases but emotionally as they constantly remind me that if I need anything (and I need to learn to ask for help) that they are there, they will come and they will help even if its to just stick the kettle on and make me laugh.

I have also joined Twitter (Becs654) and have found a lot, and I mean a lot of people that have ME and Fibro and there seems to be some debate going on as to the classification of ME and CFS (Chronic Fatigue Syndrome). I have read this debate go on, even commented on a few 'tweets' and the more and more I read the more and more I am starting to believe the patients and not the medical professionals in their understanding of ME. Currently, ME is classified as a Neurological Disorder, which I agree with but it is still being tagged with the diagnosis of Chronic Fatigue Syndrome. Whilst I do believe that CFS is a REAL medical condition, it is not a significant diagnosis for ME. Chronic fatigue is just that, chronic fatigue, it does not define ME. It is one symptom, whereas ME has a wide range of symptoms of which chronic fatigue is just one of. ME then has further symptoms like severe joint pain, muscle pain, headaches, earaches, sore throats, brain fog, dizziness, insomnia, stiffness, trembles, confusion, lack of concentration, lack of co-ordination, IBS, weight gain and so on. Some people have described ME as being as bad as having cancer but without the terminal issue. I wouldn't know but what I do know is that it is real, its not in our heads and it cannot be treated by CBT or GET or any other therapy to train our brains to convince us we aren't ill, its just a way of the medical profession trying to show the rest of the world they are doing something without really doing anything about it. Which can be said about a lot of 'silent illnesses' which in my opinion is bang out of order. There are new strains of virus's, cancers and other illnesses diagnosed everyday and are recognised within the medical world so why can't ME? Oh, I know why, it has no bio-detector, meaning it is diagnosed once everything is ruled out. Well that shouldn't rule it out as a proper illness. Our immune system is compromised, our nerves are shot, our brain stems don't function normally and our bones are weak yet its all in our heads!?! Well, my head hurts along with the rest of my body and believe me, that feels pretty real to me!