Help!

Hi all!

Just wondered if other members have problems with spouses understanding what you are going through, mine doesn't seem to realise how difficult everything is for me! Sometimes I feel he resents me not being able to work anymore, I spend most of the time in bed as I'm not comfortable sitting. I sometimes think he hates me 😢😢 and I already hate myself enough! I've got fibro, myasthenia gravis, neuromyotonia, severe spinal problems/degenerative spine disease (had six spine ops), registered severely sight impaired/blind, have urticarial vasculitis, severe depression and severe back pain that never goes away!

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  • Hi Raeben so sorry to hear everything you are going and gone through. My husband has never understood the pain and discomfort I am in on a daily basis. I am lucky and manage to still work in a very demanding job, so his belief is if I can go out to work I can't be suffering as much as I say I am, he will never understand.

    When I was first told I had fibromyalgia, I found a written piece of work about fibromyalgia and it was addressed in general to the family, going into what the symptoms of fibromyalgia does mentally, physically and emotionally draining it affects you on a daily basis. I will have a look for it and send to you as it may help your spouse to have a better understanding. Sometimes our spouses may look as not believing us how difficult it is for us and say hurtful comments but deep down it is their fears and anxieties of seeing the suffering and deteriorating of the person they love, that drives these negative remarks and they don't mean it. It is because they have no control over helping u not to suffer xxxx take care sending love and prayers

  • You certainly have many things to deal with but it is also very hard for partners of very ill other half's, I know as I am one, it's frustrating, at times annoying, worrying and sad, where is the life we planned and hoped for, it's nobody's fault, these things happen and we deal with it the best we can but it is so so hard. Apologies if I have said the wrong thing but I have to support partners out there who are also struggling.

    I wish you both well and hope you can work through this hiccup xx

  • Hi

    I am so sorry to hear about all your health problems, it can't be easy for you to cope.

    I can imagine life for you stuck in bed can be quite isolated and boring. Let alone the pain your in constantly. Do you get home visits from your dr? Are you on anti depressants? Do you have a carerer?

    I think our other halves do find it difficult to relate to how we suffer with constant pain. I asked my hubby to read about fibro etc and to come with me to the Drs, where I broke down and said I didn't want to go on any more. It shocked him and when we got home we had a long talk. He is on face book and has joined something on there about fibro and gets quite excited if he can quote something from there I didn't know or something to help me. He said, that it was difficult to imagine me in constant pain and he did resent the illness and was angry with it (not me), for taking my life away etc. He also said that it was hard for him to see me in pain and not be able to help me and he was scared that the pain might make me do something silly. Maybe your hubby needs to speak to someone, as maybe as your so I'll he doesn't want to tell you and upset you.

    Don't get me wrong, my hubby can say he'll help more and then watch me struggle to do something, or be selfish and unthinking. I just have to remind him every so often. It can be upsetting, but non of us are perfect.

    Do you have friends or family around who can visit you and help to chear you up?

    Do you watch tv in bed or listen to talking books, to keep you from stressing over problems? Might listening to a relaxation or self help book be something that might help your mood? Have you got a sun bed or something that you could lie on in the garden in the sun (if we get any more), so you can get some vit d and feel part of life again. Being stuck upstairs away from everyone can't be good for your mood either.

    Take the bull by the horns, when you feel mentally strong enough, ask him to sit with you with a cuppa and ask how he's feeling and coping with your illnesses. He may not realise that if he talks to you about it and gets it off his chest you can both work together and make your relationship stronger.

    Good luck and best wishes. 👍😊🌺🌸

  • Raeben98 , I'm so sorry that you feel this way.Your husband may not understand but that doesn't mean he hates you...Please give yourself a break as our mind can play all kinds of games on us when we are down.Be blessed.Peck🐤

  • Hi Raeben98

    I am so genuinely sorry to read of this, and I sincerely hope that you can get through to your husband about your condition. I have pasted for you below a link to the FMA UK information booklet about Fibro. You could show it to your husband or print it off and give it to him?

    fmauk.org/what-is-fm-highli...

    You really do have some serious medical conditions blighting your life, and I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Sorry you have so much to deal with and hope things will improve for you soon.

    My husband seemed to understand and supported my move to a warmer country where I felt much better, we still spent 50% of our time together. However he left last year saying he was fed up with being my carer. Not just spouses that don't understand my sister has always been unsupportive.

    I did note recently that my husband's girlfriend was on crutches and he was caring for her and she is a lot bigger than me.

  • Hope you feel a bit better today and good luck.

  • so sorry to hear this, my other half if like this, i dont know if he is angry at me or the illness, he dosnt talk about it, he dosnt talk about much anyway. I do feel very isolated in my pain, and it seems to fall on deaf ears when i tell him I can't do something, i think he wants what used to be and not what is to be. I know we do love each other but he is not a communicator. I muddle on through and that is how i cope. personally i think he is frightened but like all men they dont acknowledge it, stiff upper lip and all. I hope you get sorted out and that you can get through to him, gentle hugs and much love xx

  • I used to be very physically strong ex army fit and outdoors type guy. Know I would struggle to lift a light shopping bag in than plan, stock up and take are of everything on a camping trip which we all used to love. My wife won't talk though not a bit. She has the Irish disease can wax lyrical on any subject for hours but mention an emotion and watch the fuckers run for the doors about a missed appointment, golf lessons and picking the kids up..... All at 23:00 hours!! Lol They can write, sing make poetry and films about it around the world but never murmur a word at home. After the MoD I became an NLP trainer dealing with stress, saying no, emotional intelligence, working as a team and trust issues so I'm a bit of an odd aware, Anglophile fibro fish! Just to add a the icing to the cake my wife is a very experienced Intesive care Sister who will quite happily corner any senior consultant to ask a direct question which they will splutter out in order to beat a quick retreat! Saying that it is always here they ask for when a difficult case kicks off. I guess I just have to accept the words of a far far greater man than me who said give me anyone to analyse, anyone! Except the Irish, would you like a cup of tea now that's all been cleared up?!

    Patrick x

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