Sticky Blood-Hughes Syndrome Support
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can anyone help please


I'm really sorry I haven't been around for a while, like many of us I've been struggling and with my diagnosis of AVN to both legs, and having undergone my first surgery I have been finding it really hard both emotionally and physically :-(

However I wonder if someone can help me, I know there is a letter of explanation to give to our family and friends.

Does anyone know where i could get a copy please?

4 Replies

Hi there, nice to hear from you, hoping you are as well as you can be, and Happy New Year to you! I have found this - They may be a good support for you and your family, perhaps they have some good fact sheets/leaflets and also an additional forum, although, please don't leave us.... MaryFx


Thanks Mary, and no not leaving you're all too nice to leave :-)



Hi Lesley, Lovely to hear from you and sorry you have not been feeling so well.

There is the Spoon Theory. That is a very good way of explaining things to family and friends. Here is a link.

Also, I had this sent to me from another community, however I think it applies to any chronic illness. It can be shared so there is no copyright providing it is not changed.

There are the things I would like you to understand before you judge me...

Please know that being sick doesn't mean I'm not human. I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don't say, "Oh, you're sounding better!".

I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't mean that I can stand ten minutes, or an hour. It's likely that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, and the next I'll struggle to reach the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author.


This 'Spoon theory' is great analogy! I can remember being on top of the world before I was diagnosed and thinking anyone lying down in the middle of the day was just plain lazy! Oh dear! It's come to haunt me. Today I used up nearly all my spoons when I tripped crossing the road and cracked a rib. I was alright until I got home (I think I used my adrenaline rush to get home) My Husband says he sometimes forgets when I look "so well," that some days are a struggle. I think I'll make a special spoon jar to leave in plain sight!


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