Learning to live all over again
We, with a debilitating disease, like Myositis or MD know all about side issues. They are an integral part of the disease but are quite often lumped into the description and symptoms of the disease. Headaches, stiffness, high blood pressure, elevated cholesterol levels, lung infections, itching, swallowing difficulties, high sugar levels, arthritis, foot drop, swelling, body fat gain, back pain and the list goes on and on.
These side effects could be caused by the medication being prescribed for the disease, or due to the fact that our immune systems have been compromised by the disease.
I can remember just such a case when I was put on high dose Prednisone for 6 months. My personality changed from passive to aggressive, I put on weight all over, I developed a bump at the base of my neck at the back (sometimes referred to as a buffalo hump), swollen feet and hands, dizzy spells, headaches and mood swings second to none. At that time I felt like I could quite simply just chew paint off walls I was so highly strung and on edge ready to attack at the drop of a hat, then just as suddenly could burst into tears. There just didn’t seem to be a happy medium.
I had to come to terms with the fact that I had an incurable disease with the added stress of the side effects of the prescribed drug.
After it was ascertained that these drugs were not having their desired effect on my disease I was weaned off it, much to my satisfaction, although I never returned to my old self. I kept the weight, swollen feet, headaches, edginess and occasional mood swings but the buffalo hump got smaller. I have also heard of incidents where drugs were administered for, say, high cholesterol, only to cause patients to have such severe counter reactions that it would necessitate hospitalisation.
Now added to the side effects of medication are the other ones like aches and pains in joints and muscles, itches that cannot be scratched, limbs that cannot be moved without help, eating or drinking are difficult and may require assistance, getting into and out of bed, turning over once there, sitting down or standing up, walking, opening doors and windows, personal hygiene, toileting, cooking and cleaning all pose the problems of having any debilitating disease. The norm is no longer. (It has become abnormal), which in turn is our normal. In fact virtually everything that we once considered normal becomes abnormal and basic living skills have to be relearned. It is like being reborn in an adult body. (A battered and broken body for sure, but still a body). Walking, eating, washing, sleeping, sitting and everything else has to be approached from a different angle or has to be relearned from scratch. Even simple tasks like scratching an ear, brushing of teeth and hair present new challenges to us.
Connected to this is the fact that some normal activities can just no longer be carried out and we then have to concede defeat and reluctantly add this activity to the “No can do list” which steadily gets longer and longer despite our best efforts. There are numerous disabled aids and equipment on offer at exorbitant prices from various equipment suppliers but sometimes these items also become redundant over time. They often serve their purpose very well for a time but then the old body deteriorates further and renders them useless.
The struggle of rebirth and the relearning of new “old” skills will continue indefinitely while there is still debilitating disease undermining our once healthy bodies.
Years of experience with Disability, it’s complexity and survival are tackled head on in these articles. Roly has been wheelchair bound with myositis for some 10 years now and he has numerous articles published in magazines in South Africa and on various sites on the internet. Article Source:http://www.articlesbase.com/disabilities-articles/learning-to-live-all-over-again-1375861.html
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