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We are struggling to cope

JpcJpc Posts: 14Member Listener
edited January 7 in Disabled people
hi I have ME and chronic pain. I’m a single mum with one teenager and am currently killing myself to work 20 hours a week.

i only see my daughter and mum a couple of minutes a day because every spare second is spent fighting through work or laying in my room. I sometimes sleep up to 20 hours and worry about pressure sores.

im terrified of the future - my mum is getting on and currently does all the household work, including parenting my child and cooking and cleaning. I contribute a large chunk of my pay but she subsidises us massively.

when my daughter turns 18 I will lose most of my tax credits and I don’t know how I’ll survive.

my mum also has rheumatoid arthritis and is limited in what she can do too. Our house is beginning to feel like a prison to all of us and it’s affecting all our mental health. I’m so depressed about everything and I know my mum and daughter are struggling too.

i don’t know what to do. I’m a member of several Facebook support groups and they help me feel less alone but from a practical point of view I feel stuck. My health is deteriorating and my family is suffering because of it.

Replies

  • steve51steve51 Posts: 5,865Community champion Disability Gamechanger
    Hi @Jpc

    Good Evening & Welcome it's great to meet you today 🌝

    I am very very sorry to hear about your current situation!! 

    I have also got "Chronic Pain 24/7. This started in 2005 following more" Brain Surgery"

    I have also had to take "early retirement" due to "ill health"

    Please please let me know if you need any help /advice???

    @steve51 
  • JpcJpc Posts: 14Member Listener
    Thank you - I don’t know if I can get early retirement due to I’ll health  - I’m in a very low wage job and am 32
  • steve51steve51 Posts: 5,865Community champion Disability Gamechanger
    Hi Jpc

    Many thanks, yes I was in my early 40's. I loved my job but it was "far too much"

    I had to stop and take "stock"

    Things worked out really well in the end!!!!

    Please please let me know if you need any further help!!!!!

    @steve51 
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    Hello and welcome. I was wondering do you get any disability benefits as you can get advice on here about that? Also what your teenager is doing affects your benefits not necessarily their age. For example whether they are in full time education or not or if they are in training. So if you need any advice about that I have personal experience. You can message me if you want to. I work part time and I have fibromyalgia and chronic pain, I know how you feel it’s hard to cope sometimes but for me my job helps me feel I’m taking an active part in my life after years of not being able to. So think hard about your job. Do you enjoy it? Can you decrease your hours? Good luck x
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • JpcJpc Posts: 14Member Listener
    Hi thank you for replying.

    no I don’t currently get any benefits- I’m not convinced I could get them and I’m worried the stress of months of applying and interviews and waiting would make life worse.

    i don’t much like my job, no. It’s hard, stressful, unrewarding, and badly paid. I’m educated but can’t use my qualifications because I was never able to work full time or get in ‘on the bottom rung’ as it were. I don’t have enough energy or awake time to freelance so I’m stuck. I can’t even look for a job that is a better fit because every shred of energy I have goes on getting through my next shift.

    im seriously considering cutting my hours again but I’m already living on a shoestring and I feel so guilty that my mum is having to supplement my income, as well as run the house and do all the parenting that I should be doing.
  • steve51steve51 Posts: 5,865Community champion Disability Gamechanger
    Hi @Jpc

    Good Morning!!!!!

    Yes I had the same dilemma a few years ago now.

    I loved my job!!!!!!

    I had increased my hours to full time after my “Stroke in 1998.

    But following my last brain operation in 2005 I ended up with my “Chronic Pain”

    From then I “Desperately” tried to return to work but that was “killing” me.

    I had no choice but to take “early retirement”

    Please please let me know if you require any further help/support??
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Hi @Jpc, and a warm welcome to the community!

    Thanks for sharing this with us, and I'm so sorry to hear how tough things currently are for you and your family. I can tell from your message that you're trying your best to be pro-active, and I hope we and our members can help.

    As has been suggested, it definitely sounds worth looking into benefits entitlement. This online PIP self-test may be a good starting point, and a PIP award also entitles you to many other helpful adaptations.

    I'd also recommend arranging a needs assessment, to see if there is any assistance your local authority can provide. I hope this helps you get started, and please do keep us updated.
  • thespicemanthespiceman Posts: 5,336Community champion Disability Gamechanger
    Hello @Jpc Sorry what you are going through.

    Reading your post I want to add you are not alone.

    We as a community are here to reassure you.

    The main aspect of the issues you have is the condition you have.  Which is causing you problems and a lot of stress.

    We as a community can help and advise you. I know from personal experience having the qualifications and experience.

    I do think you need to sit down and revaluate your goals and aims.  What would you really like to do?. Remember it is not all about money. 

    Do you need support from the benefit system?

    Please if you do .  Please have a look at the above links.

    Do you think could do something else.?

    Do you think your employer could be more understanding and help you with adjustments  To your place of work..

    https://www.disabiltyjobsite.co.uk.

    https://www.scope.org.uk.support/services/employment/

    https://www.evenbreak.co.uk.

    Are employment agencies and employment support from organisations that help and assist disabled into work.

    Some are run by disabled people them selves.

    Do you need anything else other support . Please ask.  Mental health support.

    Have action for ME.  https://www.actionforme.org.uk.

    Helpline 0844 576 5326 

    Sorry if I have given you a lot of information to digest and look at.

    I am one of the team off community champions. I want to help you.

    You are a valued member of our community.

    Pleasure to meet you.

    @thespiceman






  • poppy123456poppy123456 Posts: 14,963Community champion Disability Gamechanger
    Hi,

    Are eligible for SSP? If you earn more than £116 per week then you will be eligible for this and it's payable for 28 weeks.

    PIP is also an option but it's not awarded based on a diagnosis, it's how your conditions affect your ability to carry out daily activities based on the PIP descriptors. See the links above in Pippa's post but having some understanding of what it's all about will also help. Evidence will be needed to support a claim and a face to face assessment will most likely be needed. It can take several months, sometimes longer to claim this, so it's not something that will happen over night.

    Do you rent your home? If so, do you claim housing benefit?

    Once your daughter reaches 18 child tax credits will continue if she remains in full time non advanced education.

    The benefit system is very complex and it's very difficult to give advice on an internet forum. I'd advise going to your local CAB for a full benefits check.

    As for your health and those that care for you, have you thought about a carers assessment? contact your local social services about this and someone will come out to assess your needs.  Do you have a physical disability? if so, you can self refer yourself to an Occupational Therapist who will come out and assess you for aids around your home to make your life a little easier. Again for this you'll need to contact your local council.
  • crackercracker Posts: 305Member Pioneering
     have to choose between medication, food and heat. Social  Security, main income for retired and elderly, have been cut by $200.
    Thousands are working without pay. Benefits for disabled, poor  and elderly 
    are being cut. Also those for children's programs, too.

    The country is falling apart.

    And all because of a wall...?
  • crackercracker Posts: 305Member Pioneering
    Lost first sentence -  meant  poor, elderly and elderly
  • JpcJpc Posts: 14Member Listener
    Thank you for taking the time to respond Poppy123456 I think I’m probably eligible for SSP but even if I could get any of the awful people st my local surgery to sign off on a sick note, it wouldn’t really solve my current problems. I’m really trying to stay in some amount of paid work as long as I can - I’m terrified of not having any independence at all. PIP worries me because my doctors surgery is very unsupportive and getting access to any care has been a nightmare. I don’t think I’d have the proof the assessors would require because my surgery can’t or won’t refer me to any specialist or clinic. Because of my income and inability to keep s home or look after my daughter, I have to live with my mum. She owns the house (with a mortgage) so Even though I pay rent, I’m not eligible for benefit. At the moment, i expect my daughter to go to university after A Levels so I only have four more years of tax credits. I’m Very worried about how I will manage once that is gone. I will try to get some information from the CAB. One of my problems is that I’m asleep almost all the time I’m not at work, especially during daytime hours. It means accessing anything including medical and business things is really difficult. I have ME which causes severe fatigue, pain, brain fog, migraine, and digestive problems. My health has left me very depressed. I have a bath bench which I bought myself but I’m afraid of using mobility aids - I think a wheelchair would Give me a lot more hours in the day but my job wouldn’t allow it because of health and safety. And I feel self conscious because I can walk a bit. I don’t know how my mum would feel about a carers assessment. If you have family that can be there for you, presumably they say you’re not ‘needy’?
  • poppy123456poppy123456 Posts: 14,963Community champion Disability Gamechanger
    If i were you then i'd be thinking about changing my GP. Having a GP like that isn't the best place to start when you have a health condition. The most important thing is having a GP that is understanding. Why won't your GP refer you to anyone? have you asked?

    For evidence to support a PIP claim, you don't need to ask your GP for anything. Letters written by a GP aren't the best evidence to send anyway because most GP's have no idea how our conditions affect us against the PIP descriptors. You can also access your medical records and have digital copies free of charge and for this, they can't refuse you. They will only charge if you ask for paper copies.

    For help with aids around the home you can self refer for an Occupational Therapist to come out and assess you. They will give you all the help you need. For this you just have to contact your local council adult social care. I did this for myself about 6 years ago and my OT was extremely helpful. There's no need to buy these things yourself.

    The carers assessment will assess your mum because she cares for you. Have a read of this link about carers assessment. https://www.independentage.org/information/support-care/support-for-carers/getting-a-carers-assessment

    I requested a carers assessment last year because i have health conditions but i have to care for my daughter who has autism and a learning disability. It's extremely difficult most of the time because she can't be left alone for any length of time, she's unable to cook her own food or go out alone. The carers assessment results were amazing.

    She now gets 8 hours of support each week and has a support worker to take her where she wants to go and do the things she wants to do. She also helps her in the kitchen and change her bed once a week. I know it's only 8 hours but it all helps. It's also all paid for by my local council through direct payments. On top of this i was also given £2,000 for respite. This means that my daughter can go on holiday and take either her sister or support worker and it's all free up to this amount. They are there to help you, not to judge you.

    Once your daughter leaves college and goes to university she will be able to have a student loan. This will help her through her university life and should be something she should look into applying for when the time comes. How much she'll get will depend on your income. Most students have the student loan, without this they wouldn't be able to go to uni. Along side this most students have to work to support their self. I know your benefits for her will stop but if she moves out of home and lives else where that will be one less mouth to feed/clothe and you'll be amazed how much you'll save.

    If she still lives and home when she starts uni, her student loan will be slightly less but they she'll give you money for living there.

    My daughter started uni 3 years ago and moved out. I too was very worried about how i would manage without the extra money i got for her. I soon realised that what i was paying out for clothes and food exceeded the amount i used to claim for her, so i was better off financially.

    Do consider starting a PIP claim and get some help to fill out the forms. Hope this helps.



  • JpcJpc Posts: 14Member Listener
    Thankyou that’s really helpful. Just to see an organised list of things I can do helps.

    i have thought long and hard about changing surgeries but my next nearest one is about twenty minutes in the car rather than four minutes to my current one. There’s virtually no parking either and the roads are narrow. There’s a one way system too, which confuses me.

    I worry that I might change gp  and find they are just as bad, so I’ll be travelling further and potentially need someone to accompany me, for the same bad care.

    I have asked for help yes. I’ve asked for a pain clinic, any specialist with a connection to ME or chronic fatigue, just pleaded for help sometimes. They won’t budge. I think they have labelled me as a nuisance or a hypochondriac. They really don’t seem to care or want to offer me help.

    I managed to get a referral eventually to see cardiology for possible PoTs (a heart rate problem from standing upright) but to get it I had to collect months of heart rate data on my own and convince the doctor to show it to a consultant because she “didn’t  know what I was talking about” and “my blood pressure was low” (which is irrelevant). She was clueless and completely uncaring. It took many months and fruitless  appointments for her to give in. Eventually she agreed to send my report to a consultant and when they looked it over THEY asked HER to refer me.

    its been a nightmare.

    thank you again for taking the time to outline what I can look into. Just knowing someone out there cares is a comfort.


  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    I'm glad our members have helped move things forwards for you, @Jpc. Do you mind me asking where you're based? I have ME/CFS myself and may be able to suggest some local support/clinics.
  • JpcJpc Posts: 14Member Listener
    I’m on the south coast in Hampshire.
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