I've just been diagnosed with Fibromyalgia. We're not 100% sure of the diagnosis and shall get a second opinion but the chances are it is right. The good news has been the definite ruling out of far worse conditions. Slowly over the last year or so I've found things more and more difficult day by day. The final straw for me was the day of the V and A preview when I wasn't sure I could make it up the stairs from the ladies loo. I did, but I doubted my ability. I crowned that with having to crawl to the door of the London cab to get out of it. Sometimes the pain makes me feel like crying, sometimes it's tolerable and just there in the background.
A Facebook friend sent me in the direction of this site as a way to explain this to others as well as myself, here.
I lie in bed most night with plans for the next day. Tomorrow I will this, tomorrow I will that and sadly often nothing gets done. I'm hoping I WILL get better and I WILL make more quilts. I'm hoping.
Sally, the site you cited is a tremendously helpful one to help the rest of us understand what you're going through. You are such a huge talent in the quilting world, and I join my hopes to yours that you will improve and be able to continue your quilting.
ReplyDeleteI have a friend with Fibromyalgia and the Spoon Theory explains her life exactly. At times lately I have been wondering about myself. Are the feelings and pain I have been having just stress related from taking care of loved ones or is there something really wrong with me phsically? Some days I try to ignore the pain that I think is weather related, but less and less is getting done at my house. I have a Doctor's appointment in June and will discuss the matter with her.
ReplyDeleteBest to you and I hope you get back to doing some of the things you love on your "good" days.
Peggy
I'm so sorry Sally. You take your spoons and do what is most important to you. We'll understand when you don't blog or quilt. I have a SIL with Lupus (among other things) and reading that link made me cry so much.
ReplyDeleteI hope you feel better and I hope you have lots of good days.
Norma
I don't know enough about the condition but I have heard enough to know that it is a real adjustment to your life. The part in that story about learning to do less (and to decide which things not to do) would be a big challenge in itself. I wish I could hug you but I've heard stories that even hugs hurt physically. Please keep us posted and help educate us so we can help those who have it and live near us.
ReplyDeleteI had never heard of fibromyalgia before Sally, and so googled it (there's a myriad of sites out there!) and learnt a bit more. There's a lot of talk about the different drugs available and I do hope that you can find some relief very soon. As you say, at least you now have a diagnosis, which doesn't help the disease, but must at least remove the other fears you have had. My fingers are crossed that you will soon feel more like your old self. Take it easy, and big internet hug! x
ReplyDeleteThanks for telling about 'spoons'....it was very inspiring and I certainly have a different attitude toward anyone who suffers. I hope that you will find good days with extra spoons to quilt or just enjoy your day in any way you wish.
ReplyDeleteSally please know that we are all thinking about you and hoping that you can cope with this dreadful thing - the 'spoons' idea is a great one and I am sure you will find ways to make it work for you, so that you can have some time sewing and doing the other things you like to do.
ReplyDeletebig gentle hugs (((((((((((((((((((((Sally))))))))))))))))))))
from Brenda
Oh, that really sucks, Sally. (((Hugs)))
ReplyDeleteI am so sorry to hear this, Sally. Having Rheumatoid Arthritis myself, I so recognise the "lying in bed making big plans"-thing, - and then only getting a fraction done. I came across the Spoons-site some years back, and thought it was a very good illustration of what some days are like.
ReplyDeleteI believe there is good medication for Fibromyalgia these days. A quilting friend of mine also has fibro, and she got much better after getting the right medication, - having been quite bad for years.
will be thinking of you.
Heal as soon as possible very much I am sorry for your illness .
ReplyDeleteCan as soon as possible to continue you wonderful beautiful work ,the patch sewing .
Everything works well already I can observe your blog.
Marika is my loving embrace for you..
Oh Sally sorry to hear your news. I have fibromyalgia too. I was diagnosed in November 2008. Your description of the difficulty getting up stairs rings bells and at my worse I was crawling up the stair at night, each step being agonizing pain. I take anti-inflammatories from my fibro, and that helps some, but isn't a fix all. You'll have good days and bad and it is all about pacing yourself. Fibromyalgia is getting more credit than it use to and practitioners are getting better at recognizing it and treating it. Keep me posted and let me know if there is anything I can do to help.
ReplyDeleteJust wanted to send best wishes for dealing with life in spoons - your irrepressible spirit will come through.
ReplyDeleteSo sorry to hear this - may your 'cutlery drawer' always be full.
ReplyDeleteGish, Sally, I am so sorry to hear this. I really hope you can heal and get back to all the things you'd like to be doing. You are so talented and have so many quilts to make, so I wish you a speedy recovery!
ReplyDeleteI'm sorry, Sally...hope you start finding relief soon, and ways to ease the symptoms. I suffer from some "unknown"...probably fibro...but my doctor is one that just looks at you and says "don't even go there" when you bring it up. Whatever it is, it isn't as severe as yours sounds, and rather comes and goes in bouts. Anyway, I hope you are doing better soon.
ReplyDeleteI used to have fibro..
ReplyDeleteMy doc says she can't find any evidence anymore..
Do yourself a huge favor and completely cut out any sugar, corn syrup, Nutrasweet or wheat flour products...
I know if I eat much of any of these, the symptoms come back..and the more I eat of them, the longer it takes to feel better..
I hope you at least give it a try..
I have used this spoon theory for the last couple years. Its quite amazing eh?
ReplyDeleteI'm so sorry you are hurting:(
G
I have fibromyalgia, too. It can be rough going, but eventually you learn the 'dos and don't' of everyday life and *poof* you're off! All my best from the US.
ReplyDelete