My brother has M.E. It takes all he has to hold down his job. Almost every day he invariably gets home exhausted. By the time weekends come around he is often a spent force, with little if anything left for living a life. I am sure it has shaken his social skills. He has one friend, no woman in his life (ever as far as I know) and goes out little. He immerses himself in his hobbies and enjoys steam rallies and air shows and the like. But getting to them is an ongoing battle. I have lost count of the number of times he has made plans, even spent hundreds of pounds on tickets for this or that - and then not been able to go, flaked out on his bed.
Sometimes, for days, weeks or even if we are lucky, for a few months, he can be more or less fine, and then - bang, all his strength and energy and motivation just abandons him. One moment he can be fine and then just as sudenly he is not. It is like he has hit a wall. What with that and the related crippling migraines one has to be so careful. There have been times when we have attempted days out and a few hours in he has turned to me and said "time to go" and that's it, there is no arguement: day over, no matter what else we intended, because I know that shortly he will be flattened with fatigue and illness and if we hang about he'll have the nightmare of being stuck like that while out, still needing to get home somehow.
Basically he has to literrally take one day at a time, even each hour at a time, making the most of the good times, just getting through the bad times. And the bad times have been very bad. Back in his teens and early twenties he suffered badly with depression over the dibilitating nature of his M.E. He had always wanted to join the R.A.F - had joined the Air Training Corps as a kind of preperation, but the onset of M.E had brought all that crashing to the ground around him. The death of his dreams was a hard thing for him to handle. At one point he seriously considered suicide. Thankfully he told me as much in time for me to talk him out of it and show him that life was still worth living. At times he still gets dips and lows but with his parents support and mine he comes through.
He too has had Doctors dismiss his situation. The worst was when he was too ill to work and had to go for a medical to justify getting benefit, and when he mentioned he had M.E, he even had one tell him "I'll be the judge of that" - even though my Brother had suffered from it since his school days! (He is now in his thirties). That same person with whom I do not wish to share my lembas bread incidentaly, then turned to my Mother -who had accompained my brother because he was so bad - and had the affront to ask "and why are you in a wheelchair?" !!!
Even today there is an incredible dismissive snobbery in the medical profession. lt is getting better, but there are still far too many jerks out there who make life for my brother far more difficult and stressful than it needs to be. Unfortunately such swine tend to have influence and power.
For years my brother struggled with work. Luckily for him he is a very intelligent and talented fellow and he always proved his worth, but he has also always had a lot of sick days. Naturally there have been times when that has become a problem. Fortunately he now works for a very understanding and tolerant boss, who allows him to arrive late and leave early if need be - or take complete off days as and when required - all so long as the work is done by a certain time. This arrangement makes all the difference for my brother and for the first time that I know of he is happy in his work - though as I said, it still takes all he has and more to hold down.
I sympathise completely with you Sally and wish you all the best in your ongoing struggle. All my best Wishes,
Scutatus
