Too tired to work

My name is Claire, I am not new to this site, but have not been on it for a few years.

I was diagnosed with FM when I was 32 and then at 40 with MCTD and RA. I now have Lupus also,

Sleep apnoea (81 times per hr) and I think I have spinal stenosis, but the MRI didn't show anything.

I can only walk short distances before having to sit down, and the pain gets so bad if I try to carry on walking. I have to take a camping chair everywhere, if I want to go out.

I am on hydroxychloroquin, methotrexate, humira and 15mg of steroids (30-40mg when I have a flare).

I run my own business with 6 employees and I do now get a lot of help from my daughter and my husband, but I find I am now really struggling to get anything done as I fall asleep or I'm too uncomfortable to sit in one place for long.

I started work at 16, but have a gap where I was earning under the tax bracket, so I probably have at least 5 years to go before I have paid enough stamp for a full pension.

Should I apply for PIP, how ill do I need to be? My mother was waiting for a hip op, and couldn't walk for 18months and even then they told her that she was entitled to the lower payment, although she did end up getting more.

I haven' looked into getting disability, but have a blue badge, which they sent straight away without having to see anyone. Is there a way of wording that sometimes you feel ok, but other times are dreadful.

Hope you can help, I don't want to give up work completely, but it is now such a struggle.

Claire

20 Replies

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  • Hi claireie

    I am so sorry to read that you have been suffering so much with your illnesses and I genuinely hope that you can find the answers that you so desperately desire an deserve.

    I think if you have disabilities then it is always worth applying for the benefits, and let them decide if they feel that you warrant a payout? The DWP have forms that ask questions, the assessors that come and see you and then others looking at your claim, and people who approach your medical specialists, so if they agree to awarding you disability benefit, then you deserve it!

    I have pasted you a link to the GOV.UK pages on how to claim PIP (Personal Independence Payment), and I want to wish you all the best of luck with your claim. It is a non-taxable benefit and can be claimed regardless of whether you work or not:

    gov.uk/pip/how-to-claim

    Since you are new to all of this, it may be prudent to seek help and advice with filling in your forms? The Citizens Advice Bureau can help you with this?

    All my hopes and dreams for you

    Ken x

  • Claire PIP is awarded based on how your illnesses affect you not how ill you are. I would advise you to complete the form as though it was your worst day. There is a lot of advise on here about benefits and I am sure there will be others along shortly to give you more advise.

    Personally I was recently retired early from teaching due to my health but did not qualify for PIP, though I have asked for it to be reconsidered.

    Good luck with everything, Linda.

  • Hi Claire I would send for the forms for PIP ask your GP and anyone else who you see to for any letters of support in place now as they can take a few weeks before you receive them as the more evidenceyyou have helps when they look at your claim also make copys of all information you send also send it recorded delivery as they lost my first forms .Also it is worth getting CAB to help you fill them in.It is common for first claims to be turned down but allways appeal hope this helps and Wish you look xx

  • Nice to have you back but sorry to hear you have been having such a bad time of it. You can find out where you are towards your State Pension with a Pension forcast the details of how to obtain it can be found on Gov.uk . They will tell you how many years you have paid in and approximately how much you can get when your due retirement date comes around. Of course it has now moved from the usual 60 for ladies on a sliding scale but you now only have to have paid 30 years of contributions in usually. PIP has two parts care and mobility so even if you could only get mobility it would be a big help. The Benefits and Works sites have some really useful guides and you can also get good information from the CAB's Advice net and other organisations like that. If you can get help with filling in the forms please do so as the experts know exactly how to word things. I haven;t had to apply for PIP yet that pleasure, ha! ha! comes next April for me so haven't got my head around the difference between it and DLA but the nos. of points rules seem to be tighter and I know they have taken some of the things out which I scored on before so I reckon I am going to miss it by a point on my calculations but always worth going for. Try and get the support of any medical professionals you see as I know that their letters carry alot of weight. I would just start doing a diary recording pain levels and the things that you find difficult to do like dressing or washing and how long they actually take you as we all get used to our disabilities and what is normal to us isn't exactly normal if you know what I mean and you might be surprised on how long it takes you to do things. Best of luck with everythingx

  • Hi Claire, i recently received a pip award and it was based on evidence from gp amd hospital i attend and an assessment by a senior nurse at an nhs centre. It is important to tell them how your illness affects you in all aspects of your life. One of my problems is remembering and another is finding the words i need to describe things, so i started by writing down things as they happened or as i recalled them. I then had all this informarion to fill in the forms. I then went to cab and they filled in forms on my behalf as they know how to word the forms correctly. I must say they filled them quite differently to how i would have, but at my assessment the nurse explained why they were right to do this, we are not experts on forms, but are the only expert on how this or other illnesses affect us. Pip is available to people who can still work and those who cannot, it is to improve quality of life, cover extra costs incurred by illness and disability and to help people take part in their commumity. I hope thi is of some help, all the best

  • Hi I had to stop working in jan and lost my job in July ,I know I haven't payed enough stamp as my ex husband told me to pay the minimum one when I went back to work after the children ,I don't know what I will do but I can't work ,I just trust it will be ok I can do no more ,I to have had similar experiences with health, I am at the MCTD point and I take a camping stool everywhere also ,I also have a mobility scooter , for walking the dog , I am being treated by gps as if i have lupus ,which I have been told is standard procedure but everyday my body is now putting new hurdles I up I have to clear ,stress is not going to help you you need to be kind to yourself my illness has come on rapidly because I would not except I was unwell ,and kept pushing myself till I nearly gave myself a heart attack I am now on total rest please be gentle ith yourself , let others do the worrying let your husband do the work perhaps, and you just be the face of your buissness and take a step back ,take care. Chris

  • Hello Claire,

    You've received many comments with advice, so can iI please provide you with this link;

    fibroaction.org/Pages/Benef...

    Plus mention to you we can send you guides for PIP via email which may be helpful, please email info@fibroaction.org for these.

    I look forward to your email

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Hi Claire I have worked for 40yrs and was told 2 years ago that 37 yrs of NI contributions mean I could later claim full pension, however, I believe that this has changed because everyone will get the same pension , if they have worked for 50yrs + or never at all. This is because those who never worked or worked very little could make up their lower pension with benefits so in essence get the same anyway. Check it out by giving pensions & revenues a ring, they were very helpful to me when I enquired. Good luck and I hope you get what you deserve as it's bad enough being I'll without the added stress. X

  • Hi Claire

    Like Emma was saying you have so many useful advise, I am new to this member, but all of them are very helpful, even though I was suffering from over 15 years I was not this bad, I kept working until 18 months ago, when suddenly just like Ken (the author) I was started to have a black out - where I have no choice to resigned from my job, but I got diagnosed ages ago, I went to join my local FM group, there was a lady who helped me filling the form ''at my worst'' stage, I sent the form, six weeks later I got my letter to have appointment to be assesed by ATOS then 6 weeks after I have got a letter from DWP in awarding me. So the process seems pretty quick if you have:

    1. Support from the GP.

    2. Letter from your Hospital (specialist)

    3. Your Local Group - (the head of my FM local group put a note on my form as well)

    Anyway, well come back, we all are here to support each other, we hope you feel better.

    At least you are not the only one, together we feel stronger.

    Best of luck, but space your time.

    B2WC

    X.O

  • It is possible for you to apply for financial support from DWP to enable you to employ a support worker under the Access to Work scheme (unless this benefit has been axed). This will allow you to get support to maintain your business with you having a PA to drive, take over tiring/heavy duties, etc. Contact the local Jobcentre Plus to speak to a Disability Employment Advisor (DEA).

    For PIP application help, you can get supportive leaflets from benefitsandwork.co.uk. Their knowledge is superb.

    As a fellow RA, Fibro & Sjögrens sufferer, I wish you well.

  • Hi All,

    Not sure if I have submitted this several times!!

    Many thanks to you all for the advice and kind thoughts. I feel much more positive about doing less hours at work and hopefully receiving financial support. I will check out all the links soon and see how I get on.

    MANY THANKS and I hope all your spoons are plentiful.

    Claire

  • Hi,

    I believe there is still an option to apply by phone... not sure.

    If so I would say don't do that, request the forms sent to you. I have word finding problems, mobility, extreme fatigue, pain and lots of other stuff, so phone conversations do not work for me at all, along with yourself too.

    Importantly express in fullest your worst days and the effects and limitations on you. Info on fluctuating conditions are hard to describe, consider using a score system to express this .

    Took me weeks to slowly complete !

    Good luck, of course if you feel you fall into criteria you should apply hun.

  • Hi claire nice to meet u xx I wd say try to claim it dont cost to do it xxxx

  • Definitely go for it! I found Benefits and Work guides to be invaluable in wording the answers for DLA. I haven't had to apply for PIP yet but am waiting to hear if my award has been ratified or if they have decided not to award me higher mobility. The first time I applied, I was turned down but go to appeal. Xo

  • Hi Clare, bless you, you really do have so much to contend with. I suffer with Fibro/CFS/ME, & lots of other ailments. One of which is an extremely rare one; Elhers Danlos Syndrome, it is a Connective Tissue Disorder, that has some similarities to your MCTD. I am also currently being investigated by Immunologist for RA & Lupus as done extensive tests & seem to think this could be" Diagnosis " but unsure until I see Immunologist this month.

    My son has Sleep Apnoea (169 per hour!), I would think you should be entitled to @ least Care Component for the Night with Sleep Apnoea!

    I would imagine you are on Sleep Apnoea Machine with your Count!!

    I think the best advice has come from other Members re contacting Citizens Advise Bureau as they would know precisely which Benefits you are entitled to? I would also imagine that you are entitled to a Blue Badge or even Disability Living Allowance? Especially with all of your Ailments! You can still work with DLA! Also have you been referred to a Chronic Pain Clinic yet? They are extremely helpful with Psychologists. Physiotherapists, Doctors, Nurses ect who specialise in living with Chronic Pain. Who would also be able to advise you with the correct Medications/Treatments for all your conditions?

    There maybe a "Waiting-list" and my sons & myself were out of the area but it is one of the best things we both did to help us live/cope with Chronic Pain, on crutches or Wheelchairs?

    I would imagine you are entitled to some sort of Benefits, without giving up work if you still wish to work & are able to, that is what they are there for but like I said advise off other Members I would certainly pay a visit to CAB to see where you stand?

    Your Rheumatologist can refer you to Pain Clinic, some are Residential & others Out-Patients, we both found them most beneficial!!

    I sincerely hope/pray you can get all of this resolved asap, as it is only what you are entitled to!

    Good Luck Clare, every blessings & best wishes to you.

    (((Gentle hugs)))

    Lynn XX

  • Hi hun

    Sorry to hear your suffering I go true stages that I just can't work either true pain or tiredness but try hang in there as they are just stages and I hope passes soon for you just no your not alone :-)

    Best wishes Mary :-)

  • Hi I haven't read the other replies yet so I may be repeating something, so sorry about that. But I did want to reply to your message. It sounds as if you have an awful lot to deal with and I admire your ability to work. I am also in work and am fighting to keep it that way, but I have been off so much they are making it difficult. That's not what I wanted to talk about. I wanted to tell you that I am on DLA which is gauged on how your body is affecting your life, not whether you are working or not. I get the mobility part which enables me to be on the Mobility Scheme where I lease a Mobility Scooter, but it could have been a car. You cannot be on the scheme if you do not have disability support like DLA or PIP. Its great because I have independence and can pop to the shops or walk the dog. Not currently because my back won't let me go over the bumpy pavement or road. But normally. I also use a wheelchair for distance so I can get from A to B more easily, although that is limited as my wrists won't let me push myself for too long. However it does enable others to help me by pushing from time to time. I have thought of one of those walking frames that includes a seat, as it also has wheels so wont be a problem to carry, but I am not there yet. I am proud of my scooter and have dressed it up so it is mine and not old personish!

    Right, more to the point, when you fill in any paperwork about your health to claim either PIP or DLA you must think along the lines of your worst times. If you sometimes need help dressing, getting into/out of the car/bath etc. You must include this. If you don't they get upset with you and think you are lying to them somewhere else! Seems odd but its true - in my experience that is. Maybe sit down and list everything you can think of that causes you problems. Start with the top of your head - migraines etc and work down to your toes, cramps etc. Then start with when you wake up to when you fall asleep - do you need help with dressing/undressing, standing up, walking etc etc etc. Include absolutely everything and ask those nearest and dearest to you if they can think of anything you might have missed. Fibro Fog does not help you with this, it messes you up!

    You can also get help filling in the paperwork from Citizens Advice, but make sure it is someone with experience helping you.

    Welcome back. I hope something helps you on here and I look forward to hearing your PIP is successful. If you find you are off sick you can also contact Access To Work who will try to help you get back to work and will assess your environment giving you advice and support too. This can even mean they will pay for things to be done.

    By the way, I am worse when I am talking! Chatter box me! Take care!

  • So sorry sweetheart, I think you would qualify my darling as I don't know how you have worked as long as you have!!! Bless your heart!!! xxx Mitzi

  • Thank you so much for all your kind words and advice.

    I don't think I will be able to work for much longer - I seem to make so many mistakes and my memory is making things worse. Trouble is, I don't know what I am going to do. I have worked since I was 16, with very little time off, and I am 50 now. My father was ill from around 53 and made redundant due to his inability to do the job, and he has done nothing for the last 27 years! I have already been ill for 18 years and find that as time goes on, I am able to do less and less. Having MCTD, I jumped the NICE protocol and went straight on Rituximab and then Abatacept and Tociluzimab, but nothing seems to work apart from steroids which I have been on for 10 years, so I will probably have problems from that in the future.

    Sorry, I am just feeling sorry for myself at the moment and I just want to be able to carry on doing the job that I love and have been doing for the last 28 years, I just have no stamina or willpower to carry on.

    Claire

  • Hi again, just read your reply, please do not be too hard on yourself as you are facing a bind that is affecting your entire way of life! You are clearly an amazing and wonderful person who has worked hard and deserves to be protected by the state, after all, you have paid in plenty!

    Take care

    Ken x

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