Struggling with autoimmune problems and daily life

Hi there, know exactly what that feels like. I also have asthma. I am also sensitive to medication and fillers, cleaning products etc. I also have amongst many things fibromyalgia and the only way I can feel anywhere near comfortable in bed is to wear a fluffy dressing gown and have a large standing fan on most of the night. I also have to have windows open to create a draft and if I put the heating on if I am cold, within minutes I suffer sweats etc too. I feel for you but knowing there are others out there who have similar symptoms helps a little. Am interested to know how others with autoimmune conditions which produce a variety of daily symptoms cope with relationships, friends etc. Am really struggling at the moment. x Any suggestions and coping mechanisms would be most helpful xx

20 Replies

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  • I have three autoimmune conditions but none of them cause any problems at present. Do you have a problem with a thyroid gland dysfunction too?

  • Hi there shows thank you for replying

    Yes, I have Hashimoto's, Sjogrens syndrome, underactive thyroid which never seems to relate to what my tests say, fibromyalgia, asthma, chronic agitative depression the list goes on. I have lost nearly all my friends and two jobs because of my health and needing to cancel things etc. Now I face losing my home because I haven't had any money for food since last June (2014) when my ESA was stopped. I have been through all the appeal processes and the 2nd tier Tribunal Judge has now directed to have a new 1st tier Tribunal hearing. My meagre savings will run out before long (well money I have been left by a relative) and although my previous work pensions cover just about mortgage rent and bills, I am not entitled to any help whatsoever. I don't usually feel sorry for myself, but nobody in authority really seems to care. I have no idea when the Tribunal will be heard again or if I will get my benefit back. I am at my wit's end mentally and physically as all this has had an impact on my health even more. Sorry to have gone on, but I am just exasperated!!!!

  • I am not surprised you are exasperated as well as extremely worried, plus the stress of having your ESA removed more than 1 year ago.

    Have you spoken to your MP - and ask him to take up your case. It's scandalous that you are under such financial pressure and with 3 autoimmune conditions and hope it is resolved very soon. Is there any charities that can give advice as well. It's just too much, I think and must cause you additional symptoms.

  • Hi shaws thank you for replying. Been down MP route when first lost ESA, no joy although he did refer to DWP and Atos who recommended I appeal lol!! Just don't know what else to do. Yes, has affected my health big time just feel really depressed about the whole sorry episode !! x

  • Go back to your MP and tell him you've done as he suggested and hopefully he has another suggestion.

  • Starlet, what an awful situation you have. There have been others here describing similar predicaments and the absolute negligence of the NHS is at the crux of the matter. They send people off with "normal" blood tests and leave them to deteriorate. They have probably caused job losses and put more people on government rolls.

    I'm in the U.S. so I don't know the UK system but perhaps you were talking about unemployment benefits. Can you refinance your home?

    Autoimmune conditions often come from the exact same source, leaky gut. If you can avoid gluten, it may help and then go on eating whole foods. You probably don't want to spend additional money on probiotics but get some RAW sauerkraut and have a little with each meal. I know it's cabbage but it will be worth it to add good probiotics to help you reform your gut bacteria. If you are hypothyroid, you need good protein and unfortunately that also costs, but I think eggs, soft boiled centers provide choline. I hope you are not allergic.

    Do you think you have adrenal problems, Star? Cortisol goes too high when you are in fight or flight from stress. Just a short period of concentration can relieve some of that.

    Use white vinegar or even lemon to make your own cleaning solutions.

    If you are hypothyroid, it is possible to supply yourself. What are you taking? We need to private message for that.

    I hope people in the UK can help with some other solutions for you. You don't deserve to be suffering like this.

  • Hi Starlet,

    Hugs!

    Have you phoned CAB for some help? I know that it can take a couple or three weeks to get an appointment but it really is worth getting some support. They may be able to offer a home visit if getting out to the local office is too hard. (E.g. I can't really walk anywhere so know that getting into a local office would be difficult).

    Relationships - hmmm, yes they have been trashed by this condition. My social life used to be very much linked to work (in a professional sport industry) and only two of the many 'friends' I had via work have stayed in touch. No more Friday night rugby, lunchtimes with 'the lads', lunches with the staff team or impromptu get togethers with a ball for a kickabout (haha, I only watched and chatted but it was still a social thing).

    Old friends, those who I've known for many, many years have been lovely - I guess we have supported each other through lots of life's ups and downs - and those old friendships are built on years of mutual trust and admiration. Most of these friends I do not see very much but we text and talk on the phone.

    Relationship with my lovely partner (MLP) - I can't begin to imagine what a drain looking after me must be on his energy. Of course some parts of our relationship is effected, especially those more intimate moments. Having the duvet touch me hurts sometimes, it is therefore unlikely that physical intimacy is going to be happening!

    I love going to gigs and used to buy tickets months in advance, now I'm selling those tickets as I know that I can't go to them. I've decided that I'm going to one in December and will phone the venue to book wheelchair space so I can go. No more mosh pit for me I think!

    How am I coping? Not terribly well but I use this forum to log how I feel, let out some of the anger and frustration by recording it and 'letting it go' and I try to find a positive - no matter how small - in something every single day. And I use humour, lots and lots of it!

    I really hope that you can find some support to help your practical situation and now that you've found this forum you can be sure that you have a safe place to express your feelings and share ideas.

    X

  • I agree with LizzieMaybe, CAB helped me years ago when I had a work problem, they came to the tribunal with me, I won my case.

  • Hi there, thanks for replying. I did contact the local CAB at the beginning of the Appeal process to be advised in no certain terms that they did not help anybody with Appeals now as funding had been cut. Eventually found somebody at my local Law Centre attached to a University to help with the 2nd tier Tribunal Appeal which has now been sent back to the 1st tier Tribunal to be heard and decided again. How do these organisations think you can live without money? I don't even know if my legal representative will be coming to the Appeal, I have asked but have not received a reply. (have sent several emails). Exasperated is not the word.

  • Sorry to hear that about CAB, I hope you can find some help, its not fair the fight we have to go through to get the help we need . Good luck with the appeal!

  • Talk to CAB again. They may be able to help you negotiate with your mortgage company/landlord, they should be able to advise where you may get other practical help too.

    Please let yourself be helped in any way that you can be. It may not be with the tribunal but perhaps someone can help with supporting you at home. There are some great volunteer organisations that have folks who are willing to help. Whilst few of us have cash to donate to others, many people have time - time to help others when they need a bit of support and TLC

    Have a little Google of Timebanks - you can get help now and give something back to someone else at a later date when you feel improved or strong enough.

    X

  • Poor you! I too have asthma and various autoimmune problems which so far have not been diagnosed properly though I'm hopeful. I found when doing forms for benefits the advice at benefits and work benefitsandwork.co.uk/ were very helpful. Have you applied for DLA or PIP (depending on your area)?. My husband used to get ESA WRAG group which was stopped several years ago (and yes we had to go to appeal) due to savings but I persuaded him to apply for PIP and we got the award for 5 years with only one medical. Private message me if you just want specific help with any forms or just to rant about how stressful the system is! It is very hard and has pushed many people in the UK over the edge. The campaign at black triangle may also be able to help blacktrianglecampaign.org/t... although I can't read their stuff as I get so upset about the amount of suffering people are having.

    I had a diagnosis of CFS 20 years ago which I coped with by careful pacing and very slowly graduated activity. I have partly gone back to these techniques to cope at the moment, it means I have lists everywhere to compensate for brain fog and have to plan the slightest thing but it also puts the control for my condition back with me which I find helpful. I also find diet very important and control of my living conditions such as no perfumes in the house good.

    Lots and lots of good wishes in your struggle!

  • Hi Starlet. It's tough. I have lots wrong with me including hypothyroidism and fibromyalgia like you. I used to go out a lot with my friends, walking, parties, theatre , holidays- yes its really tough not to be part of it. Acceptance is generally the way forward. See what you can do just where you are. Helping others - like your posting on here. You are not alone and many of us are constantly trying to find away through our difficulties. Can you invite a friend round for a chat? Regarding your struggle with the authorities might I suggest you telephone the House of Commons and ask to speak to your M.P.'s secretary. I have always found them very helpful. Please let them know how desperate you feel. If you don't want to phone, although I firmly believe this will be the fastest route, the next best would be to e.mail. From expeience I have found letters not to have reached my MP. This happened on three occassions last year - apparently they just go missing? I rang my MP's secretary to find this out and then I was sent my long awaited reply. Good luck and my very best wishes.

  • Star, there are lots of organisations that can help. A severely disabled friend was left with £40 a week to live on, with a mortgage and debts to psy, when her money was stopped through a technicality. black triangle is one, obviously the cab, DPAC is another. She fought for a year with their help, got her claim reinstated and they were ordered to pay back some £6000 that they owed. That took another year, but she won. Please dont give up. The night is darkest just before the dawn. ❤️

  • Thanks to everyone who has replied to my post. The phone call to the House of Commons is a possible line of help. It is good to find understanding people on this forum, I find that most people don't or don't want to. I seem to have lost everything because of my health problems, jobs, friends, relationships, and I just can't face losing my home that I have struggled to hard to keep through all the bad times. Am trying desperately hard not to feel sorry for myself but it's difficult!

  • Dear Starlet, I hope you are still coping, I also found another very useful online community which is TPAUK and they have benefit advice and help up and also some local meetings and groups so you can actually meet some fellow sufferers face to face (none near me at the moment Shame!). Thinking of you and wishing you well!

  • Thank you so much for your message and good wishes bd79og I will look into your suggestion. x

  • Thank you everyone for your posts, it is always good to bounce things around with people and get suggestions. Sending very best wishes to everyone I also grateful for your help. x

  • All the best to you. Please dont give up.

  • Thank you MrsRaven x

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