Support is lacking

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I came on here not knowing who else to talk to without biased opinions from my family and my closest friends have struggles of their own. Does anyone else find issues with support are not helping? That CFS Sufferers have enough to go through daily?

I have had CFS for atleast five years, am currently seeking help and this has been the worst year by far. In the last month alone I have caught a sick bug, had severe neck pain and lastly had a cold ontop of the condition.

It seems everytime I have a support meeting my husbands support lasts for a short time (If it arises at all) and then he plays a guilt trip and goes completely the other way. The last group we stopped off and got a drink after because I was thirsty and he said we would sit down and try to find a time to talk about it and since then it has been all about his work and what he needs and about how good it would be if I worked full time. I have been incredibly supportive and looking after him but I just dont feel like I get that support back.It makes me so unhappy I wonder if its worth even going to the group in the first place to avoid it. And i know that people can say why are you still with him but its just like saying to people with cfs why are you lazy, we are all tired.

Where do you find all find support to help cope? Fight the battle on your own or does anyone have that special someone?

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9 Replies

  • Posted

    Hi Mema,

    I'm afraid I'm in the same situation. I'm currently waiting to see a chronic fatigue specialist (after years of going back and forth to numerous GPs!) My partner dosent accept that there's anything wrong me as according to him I'm not diagnosed despite having all the symptoms and all started after having glandularfever as a teenager.

    After being off sick from work for a month I final got a different GP to listen and am now waiting for the referral! I have reduced my hours from full time (5 days) to 4 days to try and cope better at work and it also happened to be a promotion despite being same work that I was doing! My other half isn't happy all he can say is that I should be working full time not part time so he can ease up on overtime (which he's only doing because he wants to!) I'm expected to look after him and our home plus work but like you get no support from him! If I'm having a bad day I'm expected to just get on with it and cope basically do what we are told not to do and push myself! Or else get accused to leaving it all up to him!

    I don't think they understand I've even asked if he's looked up CFS which of course he hasn't to try and help him to understand. Like your other half mine isn't a bad person he's just so caught up in his own world that he can't see or understand! At least your other half attends groups with you and accepts your condition. Don't let him pressure you into doing full time just do what you can and come on here for support. I don't always post but read a lot of the discussions!

    I hope he becomes more attentive and supportive for you

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    • Posted

      Hi Sarah

      Thank you for your reply. Im sorry to hear you are in the same situation. Its very hard as it is but sometimes people just don’t seem to understand or recognize it. Im really pleased you have seen a different gp and are able to reduce your hrs. I can imagine it being so hard when your having to work through it. It is funny, my husband is working over time (not because we are desperate but because he wants to).

      I was very lucky, the group I go to will be introducing a friends and family session so they can come along and understand it. I was luckily offered a pre-session but we have come back from it and I feel worse because I was so quiet and respectful not to have a go at him. But mine too, hasn’t read any information. When he is around other people he will make out he will help but then reality is it just never happens. I just continue to take care of everyone.

      I look after our 2 children,do all the housework, gardening and diy (which I don’t get round to) and I also clean a house once a week and look after another child twice a week which I thought would keep him happy but the truth is it does me in and he doesn’t appreciate it. There is no way I can work full time.

      I would like to think it will get better but on my hardest of days, when the support isn’t there it makes it so much harder than it has to be. I wish you all the best and hope your other half is able to find acceptance and support you too

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    • Posted

      Hi Sarah,

      Just read you message to Mema.  Please go to Action for ME site, this may also help you.  Also, when you are officially diagnosed with the condition, you are covered by the Equality ACt 2010 as far as work is concerned and they have to by law make reasonable adjustments for you in the workplace.  (This is all on the site).  Also, you both will be entitled to PIP (Personal Independence Payment), and you can claim this even if you are still working, and it is not means tested.  Action for M.E. will take you through everything step by step.

      As with Mema Good Luck

      Tx

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  • Posted

    Hi Mema,

    Really sorry to hear about this, but I think alot of us are in the same boat so to speak.  I have had CFS/ME for 7 years now, and my husband finds it extremely difficult to cope with at times.  He has never been to a meeting with me.  My nearly 19 year old daughter has a better understanding, but she went to Uni last year, and comes home at weekends.

     After losing my part time job last year, I felt worthless, on the scrap heap and just out of touch with everyone especially socially.  I then found this forum and it has been a tonic because I can messge people, real people who are going through what I am going through.  I have improved greatly emotionally since I joined and it is brilliant to see what others do to help themselves etc.

    For guidance and information on benefits, and how to explain to family what your condition is about, please google "Action for ME", which is a brilliant site which gives you all the information you could possibly want, even down to where to go on a holiday that can cater for you, employment and your rights.

    On this site you can pull off a fact sheet for your family to read which may hel.

    I wish you all the very best and remember you are certainly not alone.

    Tx

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    • Posted

      They are just not interesed in it so there is not point. I thnink they just don't want to know, wait till it happens to them. Sorry feeling very down
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  • Posted

    Ditto. I have had M.E. for 32 years now. The last three months have been dreadful after a fall due to no fault of my own. I have ended up with a frozen shoulder. Previous to that my M.E. was really bad and I jokingly said to my husband 'do you think I would get support from friends and family if I broke a leg'. The thing is I am still not getting any for my M.E. and hardly any for my frozen shoulder. I am so down about it. We went to a garden centre today and I suddenly started crying out of shear frustration, I am not able to do any of the things that kept me going and took my mind off my M.E.. I am so upset and if only friends would at least try and understand. I have supported them no end with all of their problems, so now I have decided just not to tell them how I am.

    If they want to know they can ring me up and ask me. I have told them exactly how it is for me and it is being ignored, it is not as if I havr gone on and on about it in the past.

    I don't understand why people are like this about others with M.E. Maybe someone could do some research on this.

    my husband is often not understanding and I am to very unhappy. he never backs me up in front of friends when I try to explain to them he just keeps quiet. Do they think I am making it up I wish.

    Best of luck, I must have a sleep now so exhausted.

    Alison

     

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    • Posted

      Hi Alison,

      You are the first person I have come across to have M.E. for that lenght of time.  You have shown us all at least you can survive it.  You have my sympathy with regard to people not understanding and family can be the biggest culprits.

      I too feel like that I am not be listened to and it is so frustrating especially when at times you feel so tired and ill.

      Please do not be unhappy, as there are so many of us using this site who can relate to what you are saying and in very similar circumstances.  Remember we are here to listen to you, we understand, we have all shed the tears, and you are not alone.

      Hope to hear from how you doing in the future.

      Look after yourself and  "Raspberries" to the rest of them. (Trying to be polite) Lol.

      Best wishes

      Tx

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  • Posted

    How can he recognise your problem when you say

    I have been incredibly supportive and looking after him

    Why does he need looking after, does he have something wrong with him? If not, that is going to be the start of your problem, if you keep doing everything he won't see anything is wrong. When he comes home and there is no meal on the table, no ironed shirts, maybe he might start to realise there is a problem and you need help. Oh and if he gets funny say that single people have to work and do all these jobs and that you are ill and need help.

    When I was first diagnosed many years ago I tried the professional route but got no help there at all and I paid privately. Because I am single I constantly boom and bust because I do too much when I feel good.

    The inspiration for me to try and get better actually came via my GP who told me about another patient she has with CFS who was now training for a major sporting event. I asked how I could do that and she said pacing. A combination of pacing and sheer will power I am getting there. Its not easy and there are many ups and downs.

    BTW I get absolutely no support from my family they don't get it. A couple of my friends are understanding and others see me doing things and think I am fine. Its very frustrating but I ignore it and get on with my life.

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  • Posted

    I wonder if your  husband doesn't respond t your needs in a way you expect because he is scared to acknowledge it too Mema2015. In accepting you are ill he is agreeing there is a problem to address and he possibly doesn't know how to.

    Men are classically not such open communicators especially when it is about emotions.

    i am sorry you are feeling so unsupported. I am finding it hard with that support but I agree with others posts in that people don't get it and cannot see how you can be ill if for an evening or a couple of hours you are animated and smiling.

    they also don't appreciate that making that effort comes at a cost to us.

    i do hope that the situation improved for you sincerely 

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