Having a chronic illness means you come to expect very little, least way's thats my opinion. Endless hospital appointments and the total misconception of a disease that no one has ever heard of, except the ones closest to you, it kind of makes you feel unwanted or just plain neglected.
It's no surprise that depression goes hand in hand with scleroderma or other related illnesses. The truth is that we've all had a life before the disease struck, it's not something we were actually born with, although some would dispute that. It's so confusing and much better for the medical profession to hold up their hand and say, "We just don't know?" rather than add their two pennies worth of knowledge.
I've been very worried about my daughter recently. She's shown some signs of having poor circulation and now has IBS. At 17 I did not expect her to be tested for sclero but I suppose in the grand scheme of things it's a wise move. I went along to her hospital appointment. It's true to say that the medic was more interested in me than he was in my daughter, and then went on to conclude that the CREST varient of sclero can be hereditary. This confused me because here I was with a doctor who knew very little about my condition, telling me that it's hereditary?
My doctor is based in Manchester -- a specialist in sclero! I've asked numerous times if my condition could be passed on to my daughter. She's never actually said no, but not a shred of evidence has been produced to testify that it is hereditary. So, there I was facing a different doctor in another city telling me that it is. I could scream!
My next appointment with my sclero specialist will be one of anguish. I want answers and I want my daughter testing thoroughly. Thinking back to what that doctor said, he asked that if they did find markers in my daughters blood -- would she want to know? And that is a very good question! She may or may not go on to develop symptoms but with the possibility of it being within her blood, who could blame her for worrying?
It's a conundrum, and one in which there is no real answer. If it was me facing the prospect of diagnosis --- I would want to know because diagnosis for me was long and stressful, and if I think back, I was 19 when the whole thing started, and then I was branded a hypochondriac for much of my youth.
Last week was just a plain nuisance -- a dented car, a road that I cannot travel on. This week the car seems so irrelevent, it's made of metal and can be put right. The road will be fixed so that even more traffic will use this little country lane, but it's all so trivial compared to what's really important. If only life was that simple.
My moan for today has been one of complete negative thoughts. At least summer is around the corner and there is much to look forward to. Greece is beckoning and I can almost feel the warm sun on my back and the smell of herbs and greek music in my ears! Ah, happy days!