My Secret Life – Living with Fibromyalgia

My daily challenge of living with the struggle with fibromyalgia is something very few of my family and friends know about. However, its debilitating effects on my life are presently greater than those challenges presented by CP.  In the main many of those significant in my life assume much of the changes in my outwards  appearance and increasing struggle with daily tasks is due to deterioration in my CP and side effects of medications. This is not the case! The condition of CP can not deteriorate – one can not incur net brain damage without sustaining further injury, thus CP is a static condition. Having said that the effects of the aging process on someone with CP are considerably marked. In my case the effects of the aging process on my body can all ready been seen. See following internet address:
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Cerebral_palsy_causes_and_implications
like many people my age with CP I have begun to use a wheelchair and need increasing assistance to live independently in my own home. I must say after two years I am still struggling to come to terms with this and remain unsure as to how much to rely on my wheelchair.
However, over last few months my reliance on my chair has definitely increased. For some mysterious reason the period of remission from the silent disease known as fibromyalgia has ended. Not that I have been completely symptom free during that time. The symptoms and their severity vary from one patient to another. Fibromyalgia is closely related to Chronic Fatigue Syndrome and by many in the medical field is considered the same illness with different strands of symptoms. However, some of the literature reports patients displaying symptoms of each illness independent of the other, thus appear to have only Fibromyalgia or Chronic Fatigue Syndrome. Over the last twenty years I have be diagnosed with both. Currently my GP considers the two are independent of each other and the current debilitating symptoms I am experiencing are those of Fibromyalgia.
Rather than share long medical definitions and an exhausted list of symptoms I want to share how this silent illness is affecting me personally. Moderate exercise or physical activity is activating discomfort and the pain of Fibromyalgia worse, this includes muscle pain and soreness. I feel achy and tired, most of the time, but particularly after physical activity, such as exercise, shopping, walking, standing for periods of time, and even typing. The fatigue from activity may be felt for hours after. (However see below why it is vital keep as active as possible.) Other symptoms I struggle with are: - sleep disturbance (insomnia and restless leg syndrome); sensitivity to sound (particularly when in busy shopping centres) and touch; muscle weakness resulting in problems with standing and balance; numbness and tingling sanitations; feeling dizzy on faint, irritable bowel syndrome (intermittent); jaw pain; hormonal problems; body temperature regulation problems; weight changes; recurring flu like symptoms and immune system deficiencies.

Just a note about exercise difficulties - Moderate intense exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse. This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.

Reference from: - http://www.fmnetnews.com/basics-symptoms.php

Well I guess that let's the cat out of the bag doesn't it!

Encounters in the Community

Today I breathed a shy of frustration, after years of educational programmes and countless campaigns focussing the abilities of people with disabilities, so many people in the community still hold misconceptions and condescending attitudes concerning those with disabilities. I find it somewhat disappointing at times that community attitudes seem to have taken a back step. Ten years ago people with disabilities were being viewed as belonging in the community, where as through my eyes those with disabilities are viewed as belonging to a distinct sub group of the community, who in the main interact with each other rather within the community as a whole.

In part I can not help feel some of the blame lies in a shift in government policy for current community attitudes, as restrictions in funding to the disability sector at large. There has been a notable swing away from providing individual client services back towards group activities and centred base care. Therefore, once again people are becoming accustomed to seeing people with disabilities accessing the community in groups i.e. 'group outings'.  It is increasingly my observation that people assume if people with disabilities are out with someone in the community it is with a carer or family member.

I feel uneasy when a friend is referred to by a member of the community as my carer, mother or sister. I can't help ponder why these conclusions are drawn. On one hand I know incorrect assumptions are made about the relationship between people and sometimes people assume others friends are their mothers. But to be asked if your a relative and when you answer 'no'! and then to be asked if you're a carer. Isn't quiet the same thing.

This was the situation I faced when I had coffee with my friend Sue this week. A lady asked her if her daughter would like some chips they could not eat. I felt like sliding under the table as there is only an eleven year age gap between us. I think despite us both having a smirk on our face, we shifted in our seats. Sue explained that she not my mother and asked if I would like the chips. I said no.
The lady then asked my friend if she was my carer. This time our reaction was Errrh! Why does everybody ask that when we're together. My friend then explained we were friends. I am not sure my friend has gotten used to being referred to as my carer? I made some smart remark on the way the car. 'Sue, people with disabilities don't have friends. . . Well unless their friends have disabilities too.'

It is on this premises I draw my feelings on the attitudes on the encounters I have in the community.

Disclaimer: The opinions I express are independent of any organisation that supports me or organisations I volunteer for, which may be listed in my links below.