This whole thing has been bad on both of us. Some people can be lovely we are receiving lots of great support in the local community. As with any community there are those who like to spread vicious and untrue rumours. We hate being in the public eye but to get our Hudson back we are willing to put up with this.
People are spreading rumours that my wife is not really ill and debating the severity of her condition. My first response to these people is Where is your Medical degree? I never want to get into arguments with these people but feel I need to clarify a few things. My wife suffers from M.E. (Myalgic Encepholomyeltis) sometimes referred to as CFS. It has been classified by the World Health Organisation as a Neurological Illness.
Symptoms of ME/CFS
What are the symptoms?
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time.
Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.
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. A minority of patients may experience severe symptoms such as blackouts, temporary partial paralysis, loss of speech, loss of swallowing function. These symptoms are severely disabling.
The condition is variable and patients in the extreme have died Sophia Mizra died in 2005. The coronors court in Brighton concluded that the cause of death was:-
'acute renal failure as a result of CFS'
a link to her story is HERE.
My wifes condition has varied over the past few years as M.E. does. The past few months she has been almost totally bedbound with a few days of respite. In the days of respite we have sometimes managed to get her out in her wheelchair. If you have seen us its quite a sight with Rosie wrapped up warm in layers and her legs on the wheelchair raised. Sometimes we have had to do this just to save her sanity. You just imagine being stuck on the sofa for weeks on end only being able to stand a little light. In constant joint pain and with frequent migraines. So if some of this eases off you are willing to put yourself through more pain just to get a change of scene to stop yourself going totally mad, even though you know that by pushing this could make you relapse.
We have managed probably two of these type of days since december. You can now also understand what a comfort a cat like Hudson is. If people wish to find out more about the illness take a look at SLEEPYDUST. Its a great site with lots of information.
One of our friends informed us that people are leaping on the littelest word. Most M.E suffers have to spend too much time defending there illness and fighting for correct and appropriate treatment. It seems to be one of the few illnesses that if you use a turn of phrase like 'Pop in' people leap on it. Why I don't understand as no one ever says
'I took two steps into the building then I went up two more I took another two steps and turned the door handle. I then took one more step into the building and closed the door. I then took three more steps into the building.'
They say we popped into the building. So why should an M.E sufferer have to describe every step and the pain it causes and how hard it is to hold yourself steady on your crutches without falling?
If a person is an amputee or blind or has Cancer no one ever questions it. So I have never understood why people question when someone has had various Consultants with years of Medical Knowledge in various specialities diagnose M.E.
As a carer of someone with M.E I can tell this illness is real and you really don't want it. I personally would never question anyones illness or disability. For those that do question someones illness or disability I think it says far more about them and there nature than the person being doubted.
I hope some of this will encourage people to do some research on the illness. I hope it also shows you what a comfort a cat like Hudson is and why we will continue to campaign.
Posts
