Sick of everything — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Sick of everything

mawg
mawg Community member Posts: 4 Listener
Hi, I've been a sufferer of palmoplantar pustulosis, which is a psoriasis condition for the hands and feet for nearly 20 years now. I haven't worked for over three years as the condition gets so bad. I cant wear shoes anymore as they make my feet feel unbearable, I in the past few months continually get constant pain in my feet after standing for only 30 minutes. my hands are becoming worse where its painful to even pick anything up, and even just plain water on my hands stings like crazy that I don't even want to shower or bath. I even ended up in hospital for over a week due to previous medication I was on that has badly affected my liver. 
 But mentally i'm a mess. As a 40 something man I feel I should be working, but my condition only ever gets worse and it makes me feel so helpless and hopeless. I even sit at home sometimes while my wife goes to work and just cry to myself, I just don't know what to do anymore and sometimes I just feel like it would be easier to just not be around anymore, at least I wont be in pain. I guess im just asking if there is anything else I can do. im sick of all the just snap out of it comments from people close to me as though these feelings are easy to shake but a constant feeling of being low, sad, no energy, maybe depressed just gets me even more down

Comments

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @mawg and a very warm welcome to the community. Thank you very much for sharing your story and we hope you find this a supportive and helpful place. I understand you are struggling mentally and this must be very difficult for you. Do you currently have any mental health support?
    Scope

  • mawg
    mawg Community member Posts: 4 Listener
    No I don't, and the last time I saw a doctor about it they just told me to join a gym, which was firstly more than I could afford and secondly I can't lift much with my hands anyway. Just felt like they didn't really care
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I am sorry to hear this. I would recommend going back to your GP. Even if you printed out what you have written above as it may help you explain your situation more clearly. I hope you are having a good day and the community is here to support you 
    Scope

  • jacmae62
    jacmae62 Community member Posts: 4 Listener
    I know what it is like to suffer from constant debilitating pain for different reasons. I have severe osteoarthritis both in my spine and hips and can only walk a few steps indoors before experiencing agony. Like you, it has led to me sitting indoors all day alone and crying about my situation as I had to give up work almost 5 years ago at only 50. My husband goes to work and I feel guilty as I had a really well paid job and he bless him is only on minimum wage so we have struggled. I did a 'Mindfullness' course which my GP referred me to when I first started experiencing feelings of worthlessness and suicidal thoughts. It is free and is usually 5 to 8 weeks long with like minded people. It involves a lot of meditation and staying in the moment and banishing negative thoughts that upset us. Please give it a try. It helped me relax and accept my pain. Stress heightens everything and once you feel more relaxed you may find your condition improves a little. I still hit the wall at times and have experienced problems with alcohol. Forums like these do help and I spend a lot of time on Facebook.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @jacmae62 and welcome to the community! Thank you for sharing your story with us all and I am glad to hear that mindfulness has helped a little!
    Scope

  • feir
    feir Community member Posts: 397 Pioneering
    Helplessness can be a symptom of depression and depression is anger at yourself.

    I'm finding it really hard also to accept i'm incapable of doing anything much now, it's only been a year for me and sometimes i also feel like i'd be better off dead as i have no quality of life at all and the support i need does not exist for me but i have kids and so i sometimes wallow in my own misery for a while and then think about leaving them to fend for themselves and how that's not fair (and then i wish i hadn't had kids at all) and then sometimes i think it's my right to take my own life and they'd be better off without me anyway (which is a part of depression) and then i cry loads and stop caring after a few days of this.

    The only thing i've found easy to accept is that my body is failing. That's all i can accept, that my body is dying, i just can't accept everything that comes along with it like the pain, loss of mobility and ability to function properly, and that there is no cure, that's all too hard to really take in and accept. I'm thinking to go on drugs off the doctor so i can tune life out until medical science and society has something better to offer than it does now. I used to be very anti-drugs until developing a chronic pain condition and loss of my life, now escape often seems more enticing.


  • mawg
    mawg Community member Posts: 4 Listener
    mikehughescq i'm not claiming any benefits at all. my wife works so I don't know what to do, thankyou for the link. I have made an enquiry to see a gp today so i'm waiting for them to call me back.
    the worst part of all this is the feeling of hopelessness. i'm allergic to all the topical creams for psoriasis, and I cant take any drugs due to a liver issue, so i'm stuck with nothing to help.All I can do is sit at home and wish it could all end. I physically and mentally cant take much more of the pain
  • jacmae62
    jacmae62 Community member Posts: 4 Listener
    You may be entitled to contribution based Employment Support Allowance. This isn't means tested and is based on your level of NI contributions. You should also claim for Personal Independence Payments which is for people who need help with personal care i.e washing, dressing, special adaptions i.e bath boards etc and whose mobility is impaired. It comes in 2 components, the personal care component and mobility component. Personal Independence Payments are also not means tested. You can apply for both benefits on line or over the phone. Go to www.gov.uk/employment-support-allowance and www.gov.uk/pip

    I claim both these benefits and my husband is also working. I would advise  contacting citizen advice if you need more advice. I hope this helps.  
  • mawg
    mawg Community member Posts: 4 Listener
    thanks for all your support, I'm definitely going to act on some of your suggestions. doctor prescribed antidepressants and morphine patches as well as referred me to a psychological department, so hopefully I'll be heading in the right direction
  • jacmae62
    jacmae62 Community member Posts: 4 Listener
    Time and patience. Not always easy and being accepting of the fact that we are as we are and are doing our best! I hope you kind some peace and hope that things will get better and the dark cloud that we are often under will be gone. Do please claim your benefits. If you get the enhanced rate of mobility, you will be entitled to a car which is taxed, paid and insured for your, MOT, services so you just put in the fuel. That will give you a reason to leave the four walls on good days and freedom. Let us know how you get on.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Glad to hear some progress @mawg that all sounds like things are going in the right direction. Thank you for keeping us updated and I wish you the very best of luck. Please do stay in touch with the community :)
    Scope

  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    It is never easy to accept that our bodies are failing us. I think it would make an interesting discussion, one I have had in the past, between those that have become ill after knowing a "normal" life and those that never have.

    I started to become ill at age 49 and last worked when I was 48. It has been a long process but has also been accelerating. I suppose I have been fortunate in a way in that my body copes with large doses of the strongest pain killers and so have been able to keep walking (in a way) until recently. However, now I am housebound as well as in constant pain and have been told that they will no longer increase the pain killers. It appears all the bullying I have done to keep them being increased has back-fired and now am suffering because of what the guide-lines state.

    Mentally I have struggled with more and more issues and it has become a daily battle with both getting up for the first time each day and forcing down the suicidal thoughts at the same time. I lost my partner very early on and now have pretty much lost my children too because they simply don't understand what it takes to keep going when everyone else seems to expect me to give up.

    All I can say is that you have much still to lose and too many close to you to harm in such a way. Suicide hurts those close to you and they will, to a greater or lesser extent, blame themselves and consider it their fault in failing you. However, if you really are serious about it then talk to your partner about it, their reaction will show you just how bad it would be for them,

    Whilst I am still absolutely certain that my death would be better for my children I still remember seeing them arrive at the Intensive Therapy Unit and seeing how glad they were that I had come out of the coma I put myself into. It's the one thing that has kept me going at the worst times.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • jacmae62
    jacmae62 Community member Posts: 4 Listener
    I started being ill at age 42 and had to admit defeat at age 50. It was a very hard cross to bear and me and my partner struggled financially. As well as being in constant pain, I was diagnosed with breast cancer Jan 2016 and had to have a double mastectomy. I coped well with the treatment but it has left me with chronic fatigue and I feel like I have been butchered and can't bear to look at the scares which are horrendous. I tried to raise a complaint about my surgeon but I was basically told in a very cruel fashion that the outcome of the  surgery was a result of me being overweight. There have been very dark days struggling to get around the house and coping with what amounts to  a deformity.  I spend all day alone as my husband works and have to try and keep myself occupied otherwise the dark thoughts come peaking through. I have never attempted suicide but have contemplated it and even made plans . But I never was able to do it even though I don't have kids. I still wonder every day what is the point of going on when there is no quality of life. A life of being disabled has immense challenges as even though the 2010 Equality Act required that employers, shops, transport made 'reasonable adjustment' so accessibility would be better, it just hasn't happened. So every trip out is a military operation making sure entry points are wheelchair friendly and there are disabled toilet facilities. I booked an accessible room with the Travelodge in May only to get there and find there was no walk in shower, on a shower over a bath. I had to strip wash for 4 days which itself was a task as I cannot stand for more than a minute at a time and can no longer walk. So, yes it is very difficult to lead a 'normal' life with so many obstacles
  • justJohn
    justJohn Community member Posts: 17 Connected
    Hi mawg so sorry you feel the way you do , to suffer as you have for 20 a really feel for you wish I could say something that would make you feel better . I got a feet thing not got a clue what it is  just I can not use them even put them on floor with pain I got my 77 year old mum who I love and would be lost without her . My feet bottoms feel like I held a electric drill to long but aw pain I woke other week vomiting black unable to walk it was everywhere blood test come back ok but where blood come from I not know . I would like to find out what is problem with feet just so I can put name to it . A lot of my problems I got after hip replacement  I got scalerosis on sacroiliac joint with widening think it in my pelvic region so may be my feet pain . I just got so much is over load at doctors and due to pain I miss or forget a lot what she saying  . But you have a lot of experience is there anything to help with feet pain . I do hope things pick up with you and good luck 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    I understand only too well. I began having chronic pain after spinal surgery for a slipped disc at the age of 33. I didn't work for 6 years. Then I got a very very flexible part-time job for 2 years, but it wrecked me, physically and mentally. I couldn't finish the contract, and it took me a couple of years to get over it. I guess that was when I accepted that I'm never going to be the person I was before. I was always a super-achiever, very active, a hiker, a canoer, a dancer, a gymnast, a cyclist... I won't ever be those things again, and it still hurts. I felt so alone, so depressed, so ashamed that I couldn't work. Sometimes I still feel that way. However....

    I found a community through a craft group. Many of the members are disabled (we have a lot of time on our hands and little money, so sitting around knitting is perfect - not for you, obviously, but maybe you can find something like this too?). I could only go every so often, but sometimes they would come to my place, which was great. The group broke up last year, but I have a good friend from it who I'm still in touch with. He's also disabled, but mobile, so he comes to visit me. We just drink tea and talk ****, but that time with someone is invaluable to me. 

    I was living as a lodger with a "friend" who became abusive over time. He couldn't deal with my disabilities. Eventually he threw me out, making me homeless. It was awful, but I ended up moving into a cooperative living place, and now I'm surrounded by people who also have problems, some like me, some different. They understand. I still get depressed, or have a back spasm, and stay in my room for days at a time; I still have bad periods; but when I'm a bit better I leave my room and there are interesting people around, a picnic table to sit at for a bit, a garden with flowers in it. I try to focus on those things. I smell a flower and concentrate very hard on how beautiful it is, how nice it smells, how the grass that was just cut feels under my feet (spiky at the moment), the breeze on my cheek.... I guess this is mindfulness. Appreciating the beauty in the world, which is present in all kinds of everyday situations, has really helped me. I even do it sometimes just when I'm washing my hands. The feeling of the water on my skin (obviously this wouldn't work for you), the way it glistens.... There must be beautiful things in your life. Look for them, even if it's just a sunbeam coming through a window. 

    Another thing that has helped a lot recently is that I got 2 kittens. I was suicidal before that (very bad mental health dip after PIP refused), but now I have these tiny fluffy adorable creatures which keep me company, distract me, do ridiculous things which make me laugh, love me, wake me up with purrs, and make me spend a fair amount of time cleaning up after them, feeding them, etc. It takes an awful lot of spoons, but I adore them, I'm so much less alone, and I couldn't leave them now. Unlike the people in my life, who would be very upset if I died but would recover, the kittens depend on me absolutely. I've been their Mum since they were 8 and 10 weeks old, and I couldn't leave them. They follow me to the bathroom and whine outside the door, come to the kitchen with me and catch the bloody moths infesting it, sleep pushed up against me, wake me up at 5AM to tell me there's no food, and I don't even get upset. Maybe you could get a pet? I started off with plants, found that I could care for them enough, and then graduated to kittens. Having something to care for really helps. It gives you company, distraction, love, something to care for, a reason for being here.

    I hope something I've said might help. If not, know that we're here, listening.

Brightness