Hi all

Just a little note to interest me. I'm Dave,forty seven and recently moved home to Wales after a lot of years in London. I was an actor and comedian, but have had to give those up recently.

Medically, I've had Fibro for about four years. It has progressed in that time from three or four intense flares a year to the point where I have no respite from it. I had to fight my last GP to be believed, eventually diagnosing myself as I couldn't get a referral.

I also have dyspraxia and severe hearing loss. And I'm also a carer for my wife, who has MS, and my mother, who has dementia.

I also recently bought a franchise business to allow me to work from home, and I have a very active ten months old puppy.

I just can't go to bed and risen out the worst as no one else can take care of the family. I know what I should do. In a former life I was a benefits campaigner and social worker. Ironically I can't bring myself to ask for help. It would be like admitting defeat. I'm too ill to work much of the time, but force myself to plough through it. If I stay in bed my wife doesn't get the support she needs, and I'm too brain fogged to make a plan. I can't talk about this to friends or family, but I'm failing, and pretty soon everything is going to fall apart.

Other than that I'm a happy go lucky sort of chap.

Sorry about the unfocussed rant. There used to be so much more to me than this.

18 Replies

  • Hi dave i think we all feel the same i gsve up my job 2 years ago as a support worker iv tried doing a little agency but it just makes me feel worse! So thats that can u not get help with your mum and wife it myst be a strain and cant help u with the fibro x

  • hi Lovelydai, (love the word play :) ) I'm sorry to hear that you're having so many problems. Please apply for all the help you need. It's not admitting defeat, it's accepting that there is help available to help that can make your life a bit better. How would you have advised me if I had written this post?



  • Hello Dave

    Welcome to our FibroAction community forum

    You can talk here as we understand about living with Fibro and we have many members including other men who will be able to comment on your post who'll be able to be of support. It sounds like you have worries & concerns about your loved ones that may without you realising it, be causing stress and therefore exacerbating your Fibro.

    Have you any local family or support networks for your Mother & Wife like a Carers Trust etc ? I am sure you are a very caring supportive Son & Husband and enjoy looking after your loved ones, however everyone needs respite at some point. Don't feel your not strong for having a few days of feeling you cannot cope or admitting defeat, we all have to sometimes and it doesn't mean you cannot get up fighting again !

    This is a lovely community and members report to FibroAction that it is of help while they live with Fibro everyday.We, FibroAction are glad it seems to be helping so many. I think if you talk to others here, you'll feel more supported, as all members use the community to support each other.

    If you are finding your symptoms are getting worse, you are welcome to visit our website where you will find a wealth of up-to-date evidence based information. We have factsheets you can download & print which may include treatments you haven't tried yet that you may wish to speak with your GP about. Here's the link;


    I hope you enjoy the community and if you need to contact FibroAction you can info@fibroaction.org

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Hi Dave, You sound like you really have your hands full! I know the feeling, I am a mother of five, I became ill after giving birth to my youngest just over two years ago. It has been and still is such a battle. I am a carer for my 4 year old son who has epilepsy and global developmental delay. Also for my husband who suffers from spinal erosion disease and spinal stenosis. Luckily I have 2 teenage daughters who help me but life seams to be a roller coaster of exhaustion. Just a little thought for you, i had got to a point where it was all getting me down, i just couldn't cope with the amount i had on my plate. My mother used to be a home help, so i came to the thought that i may be able to get some support with the house work at least. I went to my GP who said I need to contact Adult Social care who will give me an assessment. This seamed scary as I have children and did not want them to think we couldn't cope looking after them. But its not about not being able to cope looking after them its just help with all the other things that take my energy and attention away from them, like hoovering, mopping floors and cleaning the bathroom out. So i had an assessment, they were great and they gave me a support plan. I found the care company wonderful and great priced, i use the same one the council use. Just thought it might be helpful, they can put you in touch with occupational therapy who can help with supplying supporting aids for around the home. Good luck and always remember there is a lot of support and some wonderful people out there so you never need feel alone with it all :o)

  • Hi Dave

    Firstly, welcome to the forum and I sincerely hope that you find it every bit as useful as I do.

    I have read your post with a heavy heart and pain inside for your current situation. I would like to say very openly to you that you sound like the most wonderful human being in the whole wide world! You care for your wife and mother whom you clearly love without reservation and have expected nothing in return and I know from personal experience that many men would not. I would also like to say openly to you that no matter what happens you are definitely not any kind of failure and never will be!

    You have worked and obviously paid your taxes and therefore whatever you can claim in benefits is not a sign of defeat but the sign of a civilised society taking care of its members who have paid into the system. So please make a claim for the money that you are legally entitled too. If not for your sake, but for your wife and mother who are probably worrying about your welfare and not their own, because they love you as much as you love them!

    You said that you cannot talk to your friends and family. However, I would like to suggest to you; that to your friends and family that you ARE the most special person in the whole wide world. They probably either, don't realise of your plight or are worried about you but, 'just like you,' they cannot start the conversation themselves. So please be open with them and I am sure you will find a whole avenue of support, love and warmth awaits you.

    I would like to tell you a bit about me. I am a 50 year old professional author, and I am a husband, a father and a grandfather. My wife has MS and is very poorly. Late last year I had a very serious fall and I needed the same help, love and warmth that you now find yourself needing. My children now move heaven and earth to ensure that my wife and I are fed, cared for and want for nothing. They have been amazing! Simply because they love us without reservation. Love is the most wonderful and cherished gift that we have. Please do not be afraid to reach out for help.

    Please feel free to PM me whenever you want. I am always here if you need somebody to talk to.

    Take care my friend and good luck.


  • Hi Ken

    How are you doing? xx

  • Hi zeb73

    Thank you for your post, it is lovely to hear from and I really appreciate your friendship. I am not too bad at the moment thank you apart from my sleep pattern has disappeared for a while. I was at the hospital last Wednesday and the doctor changed a couple of my medications and I think I need to get use to the new ones.

    How are you? I hope that you are as well as can be?

    Take care my friend

    Ken x

  • Likewise :)

    Its typical that isn't it? just as you're getting used to something they go and change it :o I hope the new meds aren't knocking you sideways too much :)

    I'm just the same little ole me, I must say I've had the most strangest sleep pattern for a week or so now. I'm used to it changing though and have no commitments so can sleep when I like.

    Glad you're doing okay my friend and sending a rainbow of sunshiny healing fluffies, for you and your wife, infused with pain busting powers of course :)

    :) xxxsianxxx :)

  • Hi lovelydai, it sounds like you have a lot to cope with and it's not surprising you're struggling! I think like others have said here you need to sort out the benefits that you are entitled to and deserve and also you need to ask your GP to arrange possible home help for your wife and mother for your sake too!

    I can sympathise as I have brought up a son with aspergers and an autistic daughter who also has spinocerebellar ataxia which is a progressive brain/mobility disorder. She can't walk much and falls over all the time and is in pain. I can't drive anymore and can't take her anywhere and so we just stay hone and it drives me potty! I have Fibro, Lymphoedema and a mental health disorder and I really struggle to cope. I do now get some direct payments for my daughter to hire a personal assistant for a few hours a week to help us both. I think you should get something similar sorted for you and your family to ease the pressure a little. There are lots if people here to chat to, good luck and take care


  • Hi Dave, what a good choice, to move from London to Wales :-) I'm sorry you are having such a difficult time at the moment,

    I think you have had a lot of good advice from people with experience similar to yours. I live alone and don't have anyone else to care for (except two terriers :D) so I don't have a great understanding of your situation, but I would say that if I were in your situation I would approach your local CAB and see if they can point you in the direction of some carers or through social services.

    I really hope that things start to improve for you very soon and I am sending lots of positive healing vibes in your direction :-)

    Foggy x

  • I cannot add anything to the advice given. Except step out and look in .sending you positive healing on a big fluffy cloud xx

  • Hi Dave,

    you found a wonderfully warm and supportive site. Fibro is the pits but these folks make the fibre journey a little less painful.



  • I'll second that. Fibro seems the biggest, happiest group under healthunlocked - don't know why. Don't want to name names, you've heard from some of the best and there are plenty of others. I'm confident you'll hear from them soon.

    There's "Making Space" for dementia. Just click on <Communities> then <find communities>. There's not one for MS - again - don't know why. There is the MS Society. I get regular stuff from them as my daughter has it. Alzheimer's Society is great, I'm an occasional volunteer for them.

    You have a lot to contend with. Having paid your taxes and been a respectable citizen, perhaps you deserve a bit of help. From my reading of previous posts that practical help seems the hardest to get and getting it causes more grief than the condition. Gentle hugs :-)

    Lookout for pic of the day. It keeps me cheerful

  • Hello Lovelydai

    Welcome to the forum where we are all akin and hope you'll have a mooch round our Mother site too fibroaction.org where there is a wealth of information.

    It sounds like things are a bit more than hectic for you right now and focusing on one thing seems impossible :o

    You are right, making a plan is important not just for you but your wife and mother too. Brain fog can be a nightmare can't it !?!

    ...............It does like to interfere when you least need it :o

    I tend to break things down into smaller tasks then they don't appear to be quite as daunting and one step at a time tick them off the list when done. I put it up where I will see it a lot so it reminds me its there and there's things to do :) I mean I also do it so my OH know what needs doing to, which is one of the main reasons why I do it ;) LOL ;)

    Everyone has already given you some some lovely support and advice about the Citizens Advice Bureaux and I'd like to suggest Adult Social Services. You can go on line and fill in a form requesting an assessment of your needs and someone will come out to see you. You could get help with things such as equipment. Applying for PIP is a good idea too. All three of you may qualify.

    Well I'm looking forward to seeing you about Dave keep strong and don't lose faith :)

    Calming fluffies on route to you to help you with relaxation

    :) xxxsianxxx :)

  • Dear Dave,

    It sounds like you have found yourself in a tricky position, but perhaps your perspective could be altered if you look at it like a business review ( I am sure you have read many of these over the years):


    You have a had a full and exciting life and you felt you can cope with looking after your wife and Mum, as your time management skills have been honed over the years.

    Now, however you have additional time requirements due to your ill health.

    Therefore your must prioritise the time you can effectively and usefully give to your wife and mother and to ensure their care is of the level you would ordinarily be capable of giving them.


    your can make the decision to engage a specialist to ensure the level of care remains as excellent as you have given so far, whilst ensuring that your own health is managed well - thereby making sure that the time you do spend with your wife and mother allows for a level of positive interaction and happiness.


    As a business review statement ti looks a lot more sensible, and realistic to say you will take on help.

    You are not failing, you are not letting anyone down you are making a well educated executive decision, to ensure that your health is managed so that the time you spend with your loved ones is good, positive time, and you do not wear yourself out - where you would be no use at all.

    You are not asking for favours - you are ensuring your loved ones are well cared for - who could ask more?.

    Please, please do get some help. It would benefit all three of you.

    In the meantime - Big hugs to you :-)


  • Thanks to so many of you who have been very welcoming and thoughtful.

    I should clarify, Ruth is far from helpless. She is a working barrister, who works with the police by phone from home. She gets DLA and Mobility.

    My mum is in an excellent care home, about fifty miles away. I'm still very much involved in her care, but no longer on a day to day basis. Ironically I did more practical caringnwhen I was 200 miles away.

    I can cope with everything when not in flare. Once in a severe flare I'm not much use.

    There is just one thing too many in my life. I just need to decide which would be the least traumatic to discard. Right now that would be the business. But that would mean we would have no pension and would lose our savings.

    I walk threw miles a day with the dog, whether or not I'm in agony. I really wouldn't qualify for anything more than Carer's Benwfie, which I currently receive.

    As a carer I'm always half awake in the night in case I'm needed. It's instinctive. That's what's causing the flares.

    So this is stage one and Twp of the Plan:

    1) Collect AND TAKE prescribed meds. Its the moveable feast on my To Do List.

    2) Visit my new GP to set the wheels in motion for a formal diagnosis of Fibro.

    Once I have that I can explore options.

    Thank you all again so much.

    Right now I can't focus or feel my mouth, which is a new one!

  • Aw Dave :)

    I'm glad you've sorted a plan for yourself and am sure your mind will settle a bit once you've followed it. Its lovely to hear such positivity here on the forum as it nudges some of us into helping ourselves a bit more.

    I used to breed Russian Steppe Lemmings until I went for surgery last year and was left not being able to do it anymore (I had 32 at one point). I missed the routine of the mucking out and playtime I had to give each and everyone of them. They kept me strong and on my toes whether I was in pain or not as they were part of my personal pain management plan. I am currently looking into acquiring some more for the comfort and affection they bring aswell as giving me something to do, only a hobby this time though not breeding :(

    Its amazing how our beloved animals help us through the pains and anguishes of life not just Fibro ;)

    Take care Dave and I look forward to reading your posts

    :) xxxsianxxx :)

  • Good luck with this Dave. I always think if we have a plan of action then the battle is halfway won. Please try to keep positive as you sound like a real genuine chap that is having a really bad time. I sincerely hope that soon you will come out of the other side in much better condition.

    All my hopes and dreams for you.


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