Hi my name is Aileen. I am a 51 (nearly 52) year old mother of two girls and grandmother of four.
I was diagnosed with Crest in 1992. At the time we had not long purchased a very rundown small stonefruit property. To pay for it and to rebuild the property we both had to have full-time jobs. I worked as a Packing Manager for a very large grape and avocado export property, the position meant very long hours, (about 60 per week) lots of responsibility and heaps of stress, it also gave me great job satisfaction and a chance to meet a lot of very different people from all walks of life. It made me become more tolerant and taught me to never judge a person by what is on the outside, always scratch the surface and take a look underneath. Of course at the same time we were working very hard on our property so there was no time for relaxation or too much sleep.. I had no idea that to continue with this work would be detrimental to my condition. The information I received from my doctor was confusing and not very clear, in fact I didn’t realize at all what a difference this disease would ultimately make in my life. As time went on I found things happening to me and when I would ask my doctor he would be very vague with his answers, I was working long hours and was in a lot of pain most of the time. I was told I should expect this, as it was part of Crest. All my questions seemed to be avoided and it was becoming very frustrating. I had to leave work in 1997 as I found it impossible to continue, by lunchtime I would be totally exhausted and would have to push my body through the rest of the day. The pain in my body was never ending and I was miserable all the time but tried to hide it with a smile and a joke.
Even though I was no longer working I found that I was still plagued with overwhelming fatigue, then came rapid weight loss, and stomach problems. As no one could give me a good reason I decided to look for myself, (we had not long connected to the Internet) I typed in Crest in the search bar and there it all was, everything my doctor had never told me. It was the first time I knew that the disease I had was Scleroderma and that Crest was one branch of this disease. I sat in front of my computer in shock for a short while. I was alone as my husband was at work, so I went and cuddled up to my German Shepherd dog and cried it out. My poor dog was quite distressed and I felt guilty after for using her, but I also felt better and could think things out before my husband came home.
I went to my doctor armed with printouts from the Internet. When faced with them he said to me that he really didn't know very much about Scleroderma, that no GP does because they rarely deal with it. I was amazed that this man who I had trusted could have dealt with me this way, I could not understand why he hadn’t sent me to someone who did know.
We sold our property and moved to the Northern Rivers region of NSW where our children and grandchildren were living, and I went looking for a doctor, I was very lucky as the first one I saw said he couldn’t help me as it wasn’t something he knew much about, but he knew someone who did. I now have a wonderful doctor who understands what I am talking about and who closely monitors my condition. I have tried a naturopath as well who has a very good reputation, he said he could get rid of the fatigue in a couple of months, but after taking heaps of different herbs each day for a year there has been no improvement so I have ceased the treatment. Maybe it works for some but for me unfortunately it didn’t. My hands are a bit better here as the weather is not so extreme.
I am taking Losec tablets for my stomach as it has streaky ulceration. They seem to be working as the pain is now almost non existent. I have trouble if I eat spicy food (which I love) so I try to stick to plenty of fresh fruit and veggies. I eat meat but not as much as I used to. I can’t put my weight back on no matter how much I eat. I take nothing for my hands, but have gloves stashed everywhere, I find though that if my hands aren’t warm when I put my gloves on they are useless. Avoiding situations where I will be out in the cold as much as possible seems to be the best solution. I don’t know about any one else but I find shopping difficult, especially for groceries. No matter how hot it is outside when I walk into that air-conditioned store I have little white stalks for fingers. I drop heaps of things and as for putting loose fruit and veggies into the plastic bags- forget it!!. The absolute worst bit used to be when I would reach the checkout and go to pay for this food.
I read in an article that you should forget about the things you could no longer do and concentrate on making the most of what you can do. I have trouble with this, as my motto in life is to give everything 100% then add a bit more. For me my loss of strength and endurance has been a hard blow. I can cope with increasing pain and hands that are mostly not very user friendly, but I feel very keenly the loss of the ability to go on a hike through the bush. Stairs are now a very large obstacle, I stand at the bottom and look up and get angry and frustrated because two years ago I would have run up them. I love to swim in the ocean but it is very tiring and I can only stay in a short time. Mostly though it is not being able to pick up my grandchildren, if they want a cuddle I have to sit on the floor and pull them close. I can’t play and run with them and as they are only small they don’t understand why. I always go down in a big heap after they have been out to visit for the day. I always did things at full pace and never stopped until a job was finished no matter how tired I was. Now I can’t walk up a hill let alone run. I get angry when things that came very easy are now totally impossible for me, I get angry when family try to wrap me in cottonwool. I get so angry that I push myself to the limit and then spend days trying to get back to square one again. Luckily this only happens occasionally but I can see that I have a bit of a way to go before I come to terms with the loss of my mobility and freedom. I try not to fall into a poor me mode but just occasionally I will feel sorry for myself and have a bit of a cry, it's only for a minute though then I give both my hands a good whack and say stop it and off I go again.
I have a wonderful husband who gives me unconditional love and support all the time. His life has changed a lot too and I sometimes feel guilty over that fact. He is a very special person, I know he doesn’t really understand how I feel but the same goes the other way, I have no understanding of how he feels inside. We have been married for nearly 32 years and he is truly my soulmate.
I feel strongly that life is what we make it and by being positive and believing anything is possible then it is. I know that one day a cure will come for this disease so until then I will keep fighting with a smile on my face.
I would love to hear from any one who has a problem with fatigue or just any one at all. I think in America there is an awareness of Scleroderma, but here in Australia it is not a disease that many people have heard of and at times it makes you feel very lonely.
Aileen -dhickey@one.net.au
or desleen52@hotmail.com December 17th 2000.
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