Partners coping with our condition

I hope this is alright to ask everyone and if I a, asking anything to personal please remove.

I have only been married for 6 years in September some say the newly wed should still be active. But since we got married I have been ill with fibromaglia and now told I have CFS and is considered severe.

My poor husband he is struggling and despite hi holding down a full time job and looking after me he is grumpy and always stressed, he has now been told his blood pressure is so high and his weight loss he needs to take better care of himself.

I wondered if anyone else has found ways to help support their husband or partner through the really bad days. I feel helpless and I know he loves me and tries so hard to be understanding but I am finding myself saying sorry everyday which is making me feel worse and upsetting me. He is only human.

Dianne xx

10 Replies

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  • hi waterbottle i have ben with my partner for 11 years we have been engaged for 9 years a lot of problems my stepson was diagnosed with cancer in 2010 he is still having to have treatment he is now 20 so we dont have much privacy i have asthma underactive thyroid fibromyalgia .perifual neuropathy that is severe nerve damage to my feet .osteophorisis .overactive bladder .and my partner is so very stressed with my healt problems and his sons we are unable to have a normal sex life as i am in so much pain but you can try diferant positions you can google this sex life for disabled person or speak to your doctor or nurse yes your husband is stressed but so are you you have to deal with constant pain every day the most important thing is for you to stop saying sorry and to talk to each other you are both scared stressed and tired .get some help get your husband to se the doctor .the more you talk about the problems you both have the easier it willl be .we talk we argue we get our problems and flustration out in the open it helps i can asure you i am here for you dont bottle things up good luck .

  • My husband works twelve hour shifts and still comes home and cooks, tidies up, hoovers etc. I also feel dreadful and hate him doing it. However I do try to get as much done as I can. I'm nowhere near as house proud as I was. I manage by doing ten minutes work (max) and rest for fifteen. On a good day I will have a meal ready for him when he gets home.

    I also try to be as cheerful as I can and not to burden him with every new pain I have or moaning about having a bad day.

  • Feel for you as like you ive been married same 6 years September 09. No activity whatsoever as since my diagnosis with fibro my body is racked with pain. I can't sleep even with the tramadol gabepentine amytriptoline pain killers nothing touches my pain. The sorrys are constant, hubby works so hard and he feels helpless not being able to help. Like you I would like to ask the same question as to how am I supposed to support him ??? Im finding myself just keeping quiet these days sick of hearing myself moaning on about my pain :(

  • Hi I have been on my own for 8 years I think (forget when but might be 9) anyway did have partner for several months but recently split because he couldn't cope with my condition and wanted me to take of him and he got me so stressed I became incontinet ,I have a friend with fibro and her husband is amazing he at first didn't understand and was resentful but he was sat down by a doctor and he went to a pain and fatigue clinic to help him understand how he could help her and himself to pace. That also have an autistic son , he has now given up works and concentrates on being a carer for his wife and son. And they are really happy ,

    I would suggest the pain and fatigue clinic and see if there is a support group on your area for carers and maybe see if there's any additional support for you if you live in Wales the Welsh assemble have given funds for support works for people like us a buddy type system to helps achieve small tasks like getting out bit more or help to achieve things in home like cooking a meal once a week etc Cantreff

    Hope this helps

    Shadow

  • My husband has dreadful hours he starts work at 3pm and finishes 2am he does 5 nights and then has 3 nights off and if he can't do those hours he will be out of a job. We don't claim any carers money and wondered if I would even be entitled to ask? Ian does everything in the house apart from when I can manage a little bit of cooking but getting things in and out of the oven is not possible anymore.

    He is tired from working those hours let alone looking after me xx

  • Hi water bottle. My husband works in a supermarket and recently asked for a review of his hours/shifts due to my condition. HR agreed to change his hours so he could look after me more. Is it something your husband could look into? We have applied for every benefit available to us and hope to get some of them! Never claimed before so we live in hope. My doctor referred me to the pain clinic which was a great help. I was able to talk frankly and received helpful advice about personal issues. It is so hard to have to sit back and watch others do what you used to do. Life can throw up some challenges which are difficult to face. Perhaps speaking to a friend who knows you well, might help you to find ways to support your husband more. When you are in pain and feeling low everything seems too much to handle. My husband has Addison's so I feel guilty that he has added stress. We try to add humour to our situation and have learnt to talk to each other when we feel things getting out of hand. Hope that helps and remember you always have your fibro friends.x

  • Hi Dianne

    It is a horrible position to be in but always remember you married "For better or for worse" and even though life is a struggle you are in it together. I have been with my husband since we were16 and at school (you are allowed to bring out the violins) and have had a really tough life and I have a horrible and if anyone offers feeling today as he is at the hospital with his youngest brother that it is going to get tougher.

    As others have said try to keep a sense of humour about things I can sometimes hardly breathe when I get in some stupid situations because of fibro fog or thinking I can do something I can't and getting stuck. I have always been a creaking hinge since I was a child ad throughout our marriage have had periods of illness even though for most of that time I worked. My OH had a breakdown and had to give up work and more or less to the day a year later I became ill and work finished me a year later. However, is best on the day helps the other.

    I would get an appointment with someone like the CAB to see what Benefits you might be able to claim. See as others have suggested if there is any leeway at his place of work to adjust his hours. Have a word with Social Services about having an assessment to see what help can be given and if anyone offers you help accept and swallow your pride.

    Cut out the clutter, don't try to cook meals from scratch we have become advocates of M & S ready meals. If you can afford it if Social Services can't help get a cleaner even if it is only every 2 weeks to do the more back breaking work.

    If it is a bad day say so they are not mind readers. I say "it is a bad one today forgive me if I am snappy it is the fibro talking not me". You can still have a cuddle and a kiss (well a very gentle one) and remember to say "I love you and I appreciate everything you do for me."

    If we can't change our life we sometimes just have to try and go with the flow.

    Have to go now as I have people coming around to look at the house and OH not back.

    Take care, chin up. Soft hugs.x

  • Thank you so much for your comments my husband firm has told him he can use holiday but not at short notice which is not helpful. It is strange the friends. You think would understand say we'll push your self they really have no idea and I think unless you have this I can't expect them to understand.

    Having recently been told I also have chronic fatigue and waiting for an appointment at the pain clinic at Horton general Oxford, as my local hospital told me that I had tried one treatment which had not helped and therefore couldn't have anything else as we are only allowed one treatment at a time.

    I hope you feel well today and thank you for taking the time to reply what a wonderful group this is

  • Despite my Fibro and other health conditions, I always take heed that I am not as ill as my wife who has Primary Progressive MS. So I do everything that I can to take care of her. It is not easy and I struggle a great deal of the time but I have my hobbies and interests and my work which helps focus my attention onto other things.

    I want to genuinely and sincerely wish both you and your husband all the best of luck.

    All my hopes and dreams for you

    Ken

  • Wow you have so much to cope with makes me feel like I am to be more grateful for just having myself to worry about.

    I have lots of hobbies as well I knit, sew crochet, tapestry and Swedish weave. Without those I would be lost.

    I would like to wish you both well and have a wonderful weekend.

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