SUSAN

(submitted 22nd May 2004)
Email Susan
I'm not sure where to start with this as I find it hard to think back to how hard things were before I was diagnosed with Fibromyalgia. I'm 23 and have been married for two years to my wonderfully supportive husband Kenny and have been blessed with two boys Scott 4 and Andrew 1. Not long after I had Andrew I was diagnosed with Fibro. I was in agony from before I had him with a hip displacement. So when we came home it didn't feel like I had come home with a new baby. All I could think was why can't I just take them out for a walk, give them their bath's like any normal mother should, why can't I run over and comfort Scott when he fell over. Then months passed and as the boys got bigger and Andrew started crawling I finally had a way of playing with him, but really all I was doing was calling him to crawl over to me. I'll admit that there was a bond between us as the best thing I could do was give him his bottles and cuddle him for as long as I could. I know I seem to be going on about my kids but since getting Fibro I have changed from someone who was working as a bar supervisor and running around playing with Scott, always somewhere doing something to being bedridden for months then doing the one great thing women can do and having a baby. Then coming home and it's as if your whole world comes crashing down and from out of nowhere something is stopping me from doing the things that had come naturally, to look after the people I love. When I was diagnosed I was so happy to know that It wasn't in my mind, I actually had something wrong with me and for weeks I was delighted about it. Even my doctor found me funny as I was so happy to be able to I do have something wrong with me, that was until the Rheumatoligst told me that there was no cure, no magic tablets that got rid of it. then my happiness had a grey cloud hanging over it. I thought yes I'm going to get everything back to normal. I have a great husband and family who are really supportive and helpful. But it took everyone a while to understand what was wrong with me, how it affected me, how I had changed into this person who was needing a lot of help and support to get used the thought that I would never be the active person I'd been before. Naturally it was my mother who knew this was hard for me, she understood how it was going to affect me and she was the one who explained to my family what it was, my husband was telling people for months I had arthritis ( which made me laugh). My mother is the one person who really helps me even though she is ill herself, she still comes and helps me with the kids, helps me to have a shower or washes my hair, takes me out to shops, knows only by hearing my voice on the phone that I'm feeling down. But what would you expect she's my mother and if I didn't have the help and support that I get from her and all my other family I would be totally helpless. I also have to say my husband is great again as he is a chef and before my fibro I did the cooking but now when he comes home he doesn't go and sit down, he finds something to do that will make life that little bit easier for us as Fibromyalgia doesn't just affect you it affects everyone around you and that is why my family are so much more important than before. Also I need to say that my father now is a hands on grandfather and not just a Papa who comes around every now and again but a grandfather who has my boys running to him the minute he comes in the door to give them their baths because when Kenny is working it's them I need to do one of the things I can't. Hopefully one day we will find a way of stopping Fibro from taking over our lives and we can all return to our normal self's. I just wanted to let others who have no children that I somehow manage to keep my spirits high and have never had depression with it "touch wood I wont" and I don't know why but even when the pain is so bad to the point I'm near crying then one of the kids come along and get me to do something , It's as if Scott knows that I'm sad and cheers me up. One thing I forgot to put in my story and it's really left me feeling bad for forgeting it is about Scott. He has been so understanding about my Fibro. In the begining he found it very hard to understand why I wasn't able to do the things we allways did, but he turned into the best son any woman would dream for.For the last couple of months he has helped me get out of bed when I was too sore to do it on my own, he picks things up for me, helps me with shoes but most of all he is really good at playing with Andrew. He does have his moments like any boy does but I don't want to make it sound like I'm making him do too much at home but he loves it as when he helps me he gets a new toy car. He goes to playgroup then comes home and either they watch a video or they play outside. But most of all he dosn't care about going out with me and my stick. I haven't said much about Kenny but words can not decribe how much he helps me and how much our lives have changed and what he has had to cope with for the last 18 months but everyday he finds a way of coping with this horrible thing.

macaulaysusan@yahoo.com