Fibromyalgia Stages of Grief

All your fibromyalgia experiences, questions and answers.

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Re: Fibromyalgia Stages of Grief

Postby whoami » Wed Jul 10, 2013 5:12 pm

Grief.........is it a deep distress caused by the loss of something? Something, being what should have been, what should have happened, what it should be like

I don't know if I have, will or can go through the stage of grief with having an illness. My life is what it is. Like others, with or without illness, it is the way it is.

To say I grieve for the life I had....I had that life. That life I lived is gone, illness or no illness...gone. There were wonderful, beautiful parts I cherish. There are also parts I would never want to experience again. They happened, they are in my past, gone.

Now to say I grieve for the life I could have without illness. What would that life be? Would it be the perfect life, life without sorrow, disappointment? Would it be a life like I had before illness, sometimes wanted, sometimes not? Tell me, what should I grieve for?

I can't grieve for something that is not there. I can't grieve for something, something I have no idea what it would be.
I do not know what my life would be like if I did not have illness.

I could say, well I wouldn't be suffering from this fibro if it was like it was before fibro. True. I could also have a future life with other types of pain, loss, disappointment.

We have no idea what our future would have held if we did not have illness any more than if we do.

I try to look at what I have. I enjoy my life. There are many things in my life I love to participate in, yes they are enjoyed totally different to how they were before illness.. I have great kids and precious grandchildren. I have a hubby who is the world to me. I live!

I can look around and see others without illness but in another type of pain. Do they have the perfect life?

We can't grieve for something that is out of our control. For something that has not happened yet.

My thoughts on life ....Expect the worst, you won't be disappointed!

People may think that is depressing, being pessimistic. I look at it being optimistic. If you are prepared for the worst in life then anything above that is a bonus, a gift,
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Fibromyalgia Stages of Grief

Postby superee » Thu Jul 11, 2013 12:58 pm

This piece about the stages of FMS after diagnosis is so good and has helped me to understand things a bit more. Just like the piece For the Non Believer's that was also written by Shazq. Anyway, I didn't even think that there would be stages to the acceptance.

Initially when diagnosed, I hadn't even heard of Fibromyalgia, so did a bit of research as most of us probably did. I have encountered people that believe I am a fake, a lot who have no idea what it is and even people who for some reason tried to say they had it and that it was nothing, they had lived with it for years. That was the worst reaction because I then started to believe I was a fraud.

However, since then, I found out that this person did not have it, never did but no one could explain why they would say that. So, in a way I was forced into denial. The anger unfortunately is still with me a bit. The mood swings and angry because I can't do what I used to. I feel humiliated because at 43 I can't walk properly or very far, I can't bathe or shower myself.

I couldn't dress myself but I have just starting to change things so I can. I invested in the new bras advertised everywhere as I can step into them plus they are comfortable. Bit by bit my wardrobe will change. I can't even prepare meals or lift pans etc. I got a bad burn trying to lift a baking tray out of the oven.

The truth is, I am finding it hard to accept that I am disabled and feel so useless and that I am a burden. I have had mental health issues before I got the FMS (which I had for years before being diagnosed by Rheumatology). I already suffered from depression, severe anxiety and panic disorders.

I know many people have gone through this or are going through this and that is why I joined the forum, so I had people to talk to who understand. I admit there are times I feel sorry for myself. However, I can't help that I cry because I am so frustrated. I try to laugh and put on a brave face all the time so people won't think I am weak.

Anyway, I could go on forever, but I just wanted to say that what I am reading is answering questions and hopefully I can get people in my life to have a bit more awareness about FMS. Thank you to Shazq for the articles and to everyone who talks about their experiences and gives advice about FMS.
Last edited by FluppyPuffy on Thu Jul 11, 2013 3:02 pm, edited 1 time in total.
Reason: Split into smaller paragraphs for easier reading.
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Re: Fibromyalgia Stages of Grief

Postby FluppyPuffy » Thu Jul 11, 2013 3:20 pm

:cow-wave: :cow-wave: superee and :welcome: to our little escape from it all :bear-dancing: :bear-dancing:

Nice to hear that you're finding things to help you understand a little more about things. Not knowing about FM when you were dx'd and coming across people who don't believe FM is real or actually know of the condition are things that most of us have also experienced, so you're in good company on here :bear-dancing: :bear-dancing: :bear-dancing: As for the person who said they had FM, had lived with it for years and that it was nothing, then for it to come out that they didn't actually have the condition, if we would, we'd send Arnie out to explain a thing or 2 to them :shooting: :shooting: :shooting: I can never understand why someone would want to say/pretend they have an illness/condition, given a choice, I'd love to say the complete opposite and be able to :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: while I was saying it :teddy-bear: :teddy-bear:

I think the sort of feelings and thoughts that such reactions stir up will stay with you, to a degree for quite a while. I've been part of the club for far too many years now, and I still have some unpleasant thoughts and feeling stir up about things that were said and done in the early days :( :( :(

You've started taking some brilliant steps in the right direction to make things that bit more comfortable for yourself, so please don't think of yourself as being weak or a burden. If this were the case, then you wouldn't be looking into these different things to try and make things a bit more manageable.

We're of the same age, and I understand all too well how humiliating it can feel when things that were so easy to do pre~FM are now so difficult to start, let alone complete :facepalm: :facepalm: :facepalm: Have you considered looking into a referral to your area's Occy Health/Therapy type people to see what they may be able to provide to help you with things?? Even being able to do just a little more than you currently are able to do could help give you a nice boost :grouphug: :grouphug: :grouphug:

There's lots of other info and advice on here, as well as support and understanding, and even a bit of fun now and again, to help with getting thru the FibroDays, so keep having a look and see what else there is that might help you.

Anything that you want to know about, all you need to do is ask about it, and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: Fibromyalgia Stages of Grief

Postby superee » Wed Aug 21, 2013 12:49 pm

Sorry for delay in doing this, but Thank You for such a lovely Welcome Fluppypuffy. Knowing I am not alone had helped me a great deal. I went through a rough patch lately that was why I hadn't been on, but feeling better. You all do a brilliant job on this Forum and I am glad I joined. You give positive advice and made me look at things differently. So Thank You So Much xxx
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Re: Fibromyalgia Stages of Grief

Postby felinefine » Sat Sep 28, 2013 11:16 am

Hi

I registered here a little while ago and posted a hello but now can't find it. I am sitting here feeling my way around the forum and just read this. In tears, I live alone and not worked since July as off sick after a few TIA's (mini strokes) and the damage thereafter. My Fibro has kicked in terrible since. I am so grieving for my previous life and can't accept it. finding it so so tough at the mo. My garden is like a jungle and I'm waiting for my 84 yr old Dad come to help, it doesn't feel right.

Its a great place this an I hope to find some way of also contributing in a positive way too

x
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Re: Fibromyalgia Stages of Grief

Postby bekindtoyou » Sun Sep 29, 2013 12:33 pm

Hi Sorry to hear how sad you are and I am am also trying to find my way around the site its all a little precarious, sure we will get there in the end. You are not on your own with your tears, I posted some of the same sentiments a couple of days ago, feeling sad and lost and my thinking was soooo sad. It was kind of scarey. I miss my job terrible and the whole life change thing is really one to grapple with isnt it. Looking through the stages of grief is so spot on don't you think. Mornings are my worst at the moment, but I do find if I can get out of bed and not say the things I want to say first thing in the morning the day goes sort of better!!

Are you able to get into the garden at all ? My friend taught me a great little trick to do the garden.
She took me outside and gave me a towel to sit on the floor next to a border of weeds and said see this patch here, start there. And dont do any more than that. She has had illness too so has learned this along the way, Initially I felt a bit silly as previously I would be like a whirl wind but I so enjoyed it and I did it well. I felt a massive sense of achievement. It was about 2 square foot and that was that for the day. That is how i garden now. And yes the big tasks I have to rely on others which is what you are having to do and how frustrating it is isn't it? If I am on my own I take a drink, sometimes a flask, and a biscuit into the garden so I don't have to go back in the house i can just sit in one place. LOL sounds like I am going on a hike and I am only walking about 10 yards:0

Well you've already contributed to me feeling better, along with others that posted messages of comfort and energy to me when i was low the other day cause it helps to know there are people out there fighting the same fight. Massive hugs too you and lets hope if you've got a bit of sun in your garden you can find a little patch and a trowel and have a potter..be good to hear how you get on. Take Care
Last edited by FluppyPuffy on Sun Sep 29, 2013 1:29 pm, edited 1 time in total.
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Re: Fibromyalgia Stages of Grief

Postby SchroedingersCat » Mon Sep 30, 2013 11:14 am

Just re-read the stages for the first time in ages, and concluded that, 3 years after starting to suspect FM, almost 2 years since initial tentative diagnosis by GP, and over a year since confirmed diagnosis, I am still in the denial phase. Can't see that changing any time soon....oh well..
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Re: Fibromyalgia Stages of Grief

Postby dawn.magness@sky.com » Sun Oct 20, 2013 5:44 pm

Many years. Ago I went to a chronic pain coarse lasting for 3months 1afternoon a week it was great to meet people LIKE ME !!!
We each stood up and said a few words name, age ,how long I'd been ill and I said that it was like grieving for the lost person ME !!!!
I was so right and now I realise that it's used to help people come to terms with THIER illness !!!
But after 14yrs I tell myself not to think back think forward BUT sat here day in day out you realise that you continually go through the
Stages ALL OF THEM !!!! When you reach acceptance you rewind and start all over again !!!! AS MUCH as I tell myself don't go there again
I find myself crying because I miss work , friends MY LIFE !!!! I couldn't possibly go back to work or even go out at nights
With friends !!! I miss my social life but it was me that stopped turning up because I couldn't stand the stress or didn't have the energy to last the night !!! It's not all doom and gloom because I have some great times I have taught myself how to bake and I love that my family seem to love my cakes !!! I can't do all that fancy stuff , I stop a lot and spend days preparing so I don't have to do it all in one go and I'm really enjoying myself !!!! I spent my life trying to better myself and then I came to a complete stop !!!
Having a new skill baking it's given me strength !!! Even though I'm not the same person I believe I'm still a good person and I still have a lot to give !!!! Good luck to all and stick with it there's lots of life out there to live !!!xx
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Re: Fibromyalgia Stages of Grief

Postby jillyfrench » Wed Nov 13, 2013 11:40 pm

Totally agree with stages of grief, I seem to go back and forth through the stages, denial, anger and acceptance are all too familiar, but do our loved ones also go through these stages, most of the time I feel like a hypochondriac with pain in one place or another, or being over tired and cannot stop yawning, no two days are ever the same, and I would just love one day free of the pain, free to do whatever I want or just to be free. Much love and soft hugs to all fibro's. xxxx :-)
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Re: Fibromyalgia Stages of Grief

Postby felinefine » Wed Nov 20, 2013 11:53 am

Hi all

I tend to feel like I'm getting somewhere in adapting my life and accepting that I have Fibromyalgia. Then it hits me, like wham, how am I going to cope with this. Today I can hardly move as I dared to go out last night and sit in a different chair and got a bit cold. I have stopped being so house proud and do not hoover, dust etc as I used to. This is hard as I have 8 rescue cats, all with their own needs. Most mornings I cant even reach down to place their food bowls on the floor. I worry about them.

I got another sick cert today for another month, this brings it home how scared I feel about my future. But I do try very hard to take each day as it comes.

Has anyone got through the stages of grief and not looked back through them again?

x
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Re: Fibromyalgia Stages of Grief

Postby SchroedingersCat » Thu Nov 21, 2013 2:10 pm

I've had another think about this, and actually, I think I'm swopping constantly between denial and acceptance. I've not gone through any of the other stages.

On a really good day, I tend to plough into everything the way I always have with no thought of consequences. On a really bad day, I will leave everything undone and just got to bed after work, accepting that there's nothing I can do. I am constantly aware that there is no cure for this and I am stuck with it for life, but as a colleague remarked yesterday, I'm amazingly upbeat for someone with a life sentence.

Not sure I fit the pattern, tbh....
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Re: Fibromyalgia Stages of Grief

Postby FluppyPuffy » Thu Nov 21, 2013 3:29 pm

SchroedingersCat wrote: Not sure I fit the pattern, tbh....

There isn't really a pattern where FM is concerned. Whilst we share a range of symptoms, and go thru similar experiences, we do so in our own ways, in our own order, and at our own rate.

I wouldn't reflect too much on how your FibroQuest differs from others, you have your jorney, just as I have mine. Paths may run parallel or even cross at times, and even have happenings that help each other, but they will still be unique. And whilst we are aiming for that Holy Grail of Acceptance, what may be acceptance for you could well be something difference for me, but that doesn't mean that one is right and one is wrong, or that one is more acceptable than another, it's what is best and right for you.

After nearly 14 years with this condition, I still flit up and down the Stages Of Grief, and probably will do for another 14 years plus :shock: :shock: :shock: Sometimes I'm pretty upbeat about things, at other times my mood is lower, and all I want to do is go back to how I was pre~FM, but these darker, cloudier times do pass, then I'm back to :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: again.
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Re: Fibromyalgia Stages of Grief

Postby andycrazy » Tue Nov 26, 2013 7:19 am

I read the stages of grief and must admit I have never felt anger with regards my condition. Perhaps its because I have had it comming on for over 20years and I have always had to make small adjustments to my life style evry year. Every year since I was 28 my condition has been getting worse and 18months ago I had a really big flare up which resulted in me having to stop working, It was heart breaking that I had to give up my old hobbies, I am a qualified rescue scuba diver, and had to sell my equipment and boat. But to compensate I thought about what I can do on the days I feel bad - this helped a lot with the stage of grieving for my old life, I now have some new hobbies which I can do both indoors when I cant get out and outdoors when I can, and on really bad days instead of feeling sorry for myself I think and plan what I can do when I am moving again. This helps one to get to the stage of acceptance and helps keep one out of the very big dark black hole that fibro will lead you into if you let it. I find feeling negative emotions like anger and frustration will feed the condition and through meditation and doing little positive things the blackness will descend less and less. Hope this helps.

Now wheres my torch - its dark down here!
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Re: Fibromyalgia Stages of Grief

Postby FluppyPuffy » Tue Nov 26, 2013 2:13 pm

What you need to remember is that these are stages that MAY be experienced along the way. It's not written in stone that they must all be experienced and/or in any specific order. FM stirs up a lot of thoughts, feelings and fears, esp when you're first told that you are now a full member of the FibroFamily, so having an idea of what may pop up/be experienced can help with dealing them when they do put in an appearance :teddy-bear: :teddy-bear: :teddy-bear:
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Re: Fibromyalgia Stages of Grief

Postby lala1980 » Wed Jan 29, 2014 11:59 am

I think im bouncing between denial and searching for answers Boo hope this gets batter soon x
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