they don't understand

hello fibro buddies,

im feeling so worn down and exhausted. im recovering from a chest infection which has left me extremely achey after constant coughing and being sick. I returned to work last night in my supermarket; I really struggled to do the basic tasks I do every week. my managers have been great as I no longer work on tills as I made simple mistakes and looking from screen to customer to screen tired me quickly. so I do floor work.

I know my job inside out and do enjoy it but over the last year or more im struggling to complete my tasks. ive gone from working in 5th gear to 2nd at a push,i cant explain clearly what I mean. my body is really slow and my brain is fogged and I often say wrong things or say them backwards. I usually laugh them off but its getting to me.

my confidence has taken a massive blow and everyday tasks at home are wearing me out, I do pace myself as ive had lupus since 2005 and fibro since feb this year. I can tolerate the endless joint pain, ive toughened myself up as meds wernt working for me. my appraisal is due and their were jokes made about me not being any better in 3 years (a question on my form) they just see me on the outside NOT how I feel. I don't say much as I get bored hearing myself explain lupus & fibro to people.

but its the fatigue, it wont ease, it has been with me everyday (not lying) since 2005. I cannot make enough money living this way,we have sold treasures to pay bills and to eat. my hubby works full time and we don't splurge money on rubbish the bills and rent eat it all. we are not entitled to financial help as hubbys wages are ment to be plenty to live off. I have worked either full or part time depending on my childrens ages,my hubby during the day and me at evening/nights we are like passing ships , ive paid my dues but now are told im basically not ill enough for any help. I don't understand how it all works. we are weeks away from losing our home. I have to find a way to ignore this fatigue; my legs are like lead and hip joints are stiff and painful. im constantly telling myself I can rest when im dead,im missing out on life too. I have to cancel dates with friends,some no longer ask me now.

my husband and family do not understand how my life has changed, as I used to work 16 hour shifts and run a home and be a good mum, I hate this weak person ive become,i don't recognise the person staring back at me in the mirror, she looks worn out and older; a lot older than her years. they ashume as I should be better as ive been poorly since 2005. I hate lupus and fibro,its robbed me of a life I loved.

sorry this post is a moany one but I need to talk to somebody, I know you will understand.

love, caninecrazy x

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13 Replies

  • Hi, hope you don't mind, I tend to shorten people's id, so is it ok to call you CC?.

    You really do have your hands full don't you?. I had to look up Lupus. I really feel for you because my children have grown up, ( but as people say, they never really move on lol). My hubby doesn't fully understand what Fibro is, tho he knows I get tired, and in pain.

    However he also gets over protective, I'm 53, diagnosed only with Fibro, had Cancer 5 years ago, and am only now coming out in the open and admitting to people that have Aspergers,

    (So sorry, I try not to do long posts but mostly fail at that),

    So yes he gets over protective because, as I was used to doing before Fibro I was extremely fit, had a really physical job and two young sons, so even with the Fibro I still try and go get.

    I know that I will suffer for it afterwards and that's a price I'm prepared to pay, but hubby acts as if I'm going to be very ill.

    It's just pain, and fortunately for me my husband is very caring and I don't have to worry about "am I going to be able to get up tomorrow morning for work".

    So I have every admiration for what you are doing CC, I don't know about you but I'm very, well if it's got to be done then needs must, and I do it without complaining.

    Are you sure you're not trying to continue as normal and carry your share of the load?, the strain of carrying so much stress is unimaginable to me, and of course stress/tension makes Fibro worse.

    I'm so sorry to hear about your house, it's not fair. Do you get like a feeling that everything wrong is swirling around you continually, you can't think straight, you can't carry on a proper conversation because words just fade from your mind, you pause in mid conversation because your mind has gone completely blank? You can't think of simple words?.

    You don't say if you have sought medical help, I mean you have medical help for the Lupus and Fibro, but what about depression? I wouldn't be surprised at all since you are trying to carry what your family have seen you carry before.

    Perhaps they can't understand why you would continue on doing all you do if you are suffering.

    You have just been quite ill, but because of the way you are personally, and because of your circumstances you've hauled yourself back into work, do your loved ones say that you are strong minded or stubborn?, because maybe they feel like they can't tell you to rest because you may well listen to them, but then you'll do what you want.

    I'm so sorry, I don't want to sound critical, but something must give and your family can't afford for that thing to be your health, I know you cannot afford to lose your house either, I feel you need to visit your GP quite quickly and tell them everything.

    I don't feel that you can perform or deal with what's going on whilst possibly suffering depression plus all the other health problems, especially since you seem to be saying about not being able to perform well at work, forgetfulness seems to get worse the more we worry about being forgetful.!

    You don't say about whether you have DLA?, which you probably should do, as far as losing the house, I don't know what to do except to speak to the Bank/Building society and find out what their procedures are for you, that some kind of deal must be reached?.

    I really do wish you well, I hope that things can change for the better.

    Kind Regards

    H xxx

  • Hi CC :) apologies also hope you don't mind

    I'm not surprised you feel the way that you do with all those stressful things going on for you and your family right now. It is perfectly ok to come and express your feelings and emotions here as there will be many that can associate with what you are going through.

    It never seems to stop and we never seem to get any reprieve as a result, which is why I personally think we end up so fatigued. When I'm really stressed like you are at the moment I find it difficult to switch my head off resulting in me not sleeping at all. I'm guessing that you may also be having sleep issues too due to the worries and wondered if you'd spoken to your doctor about how you are feeling and what is happening?

    Losing your home will be devasting and can't begin to imagine how that makes a person feel as i have never experienced it but can imagine the pain.

    When it came to a point when I couldn't work anymore money was the one thing that had always made me persevere so deciding enough was enough was never easy. My tolerances waxed and waned too much for me to be reliable anymore, which crushed me inside as it was one key skill that I'd always excelled at, alongside hard working :( My knee wouldn't stop popping out and other parts started to do the same on top of the chronic pain disorder, anxiety and stress which somehow, ironically, altogether made it an easy choice in the end :)

    It's taken some people in my life nearly 20years to start to 'get it' as it were and even then only little things :o

    I hope you don't mind but I tried to find you some links that might help you gather information regarding what to do and where to go etc just in case you lose your home.

    This link is for and gives information regarding repossessions, emergency housing and evictions, maybe your local council can help you.

    This link takes you directly to their section: Emergency housing if you're homeless

    Apologies if you have already checked CC :O

    Regarding benefits have you checked eligibility on

    I personally suggest contacting Welfare Rights or CAB to ask for help and make the applications because it's the best way to get anything that you are entitled to...................... even if it does take an eternity!!

    This link takes you to the benefits advice section of our Mother site which has a useful list of resources at the end

    I hope things improve for you and there is always someone listening CC I hope the links are ok and that I haven't overstepped the mark. Please keep in touch :)

    Fluffies for you

    :) xxxsianxxx :)

  • Hope the clouds part a bit for you and your family so that you can find a way through.

    Wishing you the strength that you need.

  • Hi canine crazy, I'd been suffering the same symptoms for bout 12 years and finally I told the doctor I had fibro. No one at work understood wat was going on with me, because we look "ok". They carnt imagine anything to be that bad. CC please take 5 mins to Google "The Spoon Theory" print off and giveto family aand friends this will help them to "get it" I did this and people were amazed at wat was going on inside and the pain I was suffering. Xx keep your chin up chick, sending lots of gentle hugs. Hope this helps xxx

  • Hi caninecrazy

    I so sorry to read that you are struggling and suffering in this way, and I genuinely hope that you can find some relief and resolution to all of this!

    My first reaction after reading your post was how hard you are on yourself! You do so much, you work, look after a family and run a household. I can say to you right here and now that I could not do all of this! So please, please give yourself some credit for what you do manage to achieve?

    I can easily imagine (although you may disagree?), that many people who you know may think that you are an amazing and incredible lady for everything that you do? As they may feel that they could not cope with everything that you are going through?

    So, please be a little kinder to yourself, as you are a unique amazing individual.

    All my hopes and dreams for you

    Ken x

  • contact the cab and ask for an emergency app't - due to your house problem.

    ring your mortgage people and tell them of your difficulties.

    offer to pay them a manageable sum each month - if the person you talk to says "we can't do that," ask for their supervisor and keep on asking for the next one higher until you reach the one who can. they'd rather have some money coming in than none.

    there's also the money advisory service ("talk to Ma")

    and, if you're over 50, ageuk.

    DLA is changing to PIP but you should put in for it asap.

    phone your local council and ask to speak to a welfare benefits officer. also ask them for a number for an advocate for vulnerable adults ( which your lupus & fibro qualify you for)

    talk to your gp about how you are struggling, and to hr at work - under the disability guidelines you are entitled to adaptations and adjustments to your work.

    there is an hu forum for lupusuk

    Please let us know how you get on.



  • a big heartfelt thankyou to you all, your kind words have made me feel a bit stronger today. I will be brave and apply for PIP, I have been hesitant for a long time to do so as I know many of us are refused help. ive been to the job centre back in 2005 when I first became poorly and it was degrading having to beg for financial help.

    I do have depression, since 2004 when my twin sister suddenly died, multiple organ failure was the 1st cause and lupus the 2nd. I had always been fit and healthy before her death, I buried myself into work; I was a twilight manager and worked 12 to 16 hours aday. it was a year before I realised I had gone from a size 16 to a size 6 as I couldn't eat,sleep or cope with life. I collapsed at work and it took me 15 months to be strong enough to stand up for more than 30 mins. my health hasn't ever been the same since, I was diagnosed with post tramactic grief in 2006, and my depression has slowly gotten better as the feeling of being so low that I no longer want to live are very far and few between now. I rarely feel happy,i put on a brave face as we all have to but I cannot cope with things again.

    im due to see my rhuemmy tomorrow, its an assistant so maybe she will believe whats happening with me and not just give me a bundle of prescriptions.

    I gave the spoon theory to my family, I wary of giving to my employers as they are always busy running the shop,im only a small cog in the machine. I was a manager and now a S.S.G.A (sub-standard general assistant) as I cannot do till work or lift heavy stock/crates.

    I have to be the strong one and hold the family together, my sister has lupus, my brother has M.E. (theyre twins aswell) and my mum has always been poorly but no definite diagnosis, so I cannot ask for their help as they've enough to juggle already.

    thankyou everyone, had a cry and a cuppa. youre welcome to call me CC , my name is nina x

  • I think you are allowed to moan :) I am sorry I can't add to what you have already been told and I hope it made you feel a little better being able to talk about it to people who both understand and care. I hope you can get everything sorted out, maybe if you were a little less stressed you would start to feel a little better, I certainly hope so.

    Big hugs being sent your way :)

  • Does your doctor really think you can cope with working while having lupus and fibromyalgia? If so you need a new doctor. Doctor's with compassion will help you get your disability. I don't understand the way people treat others, when they have NO IDEA the struggle we go through!!! I pray you find the help you need sweetheart!!!! Are you going to a pain clinic? If not, please go. It makes life at least bearable. God Bless You. xxxx Mitzi

  • Hi Nina, I just hope I wasn't too forward. With Aspergers I can tend to be a bit bullish. A big hug from me, I'm so glad we may have been able to support you like this even from a distance, even if we did kind of make you cry:).

    Do go for the PIP, I'm sorry you felt like that about claiming money, right from the beginning of welfare, our benefit system was to help people who, through little or no fault of their own, became vulnerable and unable to survive, God forbid that we should go any where near a social system such as work houses or poor houses again.

    With love Deb

  • Ps, is that really your job title!? Sub standard general assistant? It makes you sound like some defective robot....

  • dear 1hope,

    I never thought you were forward, I appreciate all advice given. its all become overwhelming to b honest and needed to tell people (my virtual friends :) ) as I knew you all understand how im feeling.

    yes I am a S.S.G.A , its because I no longer work on tills so I am classed as not a full G.A. lol. maybe I am a little bit of a robot as my batteries are desparate for a charge ! lol x

  • Aww love just know how you feel love I too lost my friends through fibro I can't cope with the fatigue either love take care hugs love Jill xx

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