Disabled people
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Hard times

TopkittenTopkitten Member Posts: 1,263 Pioneering
I have now been housebound for 18 months and even though I have been out occasionally the doctors would have a fit at the medication I need to take to do so, so I tell no one. I have been fighting losing battles with the hospital, GP's and Social Care which means I am crippled sooner than necessary, I am unable to move around at home as I should and I get virtually no assistance except a very small amount from one child out of three.

Things seem all the worse since I used to be a popular, "life of the party" sort of person and have avoided entanglements with women for their benefit rather than my own since I realized just how ill I am and would become. I am struggling with not only illness both physical and mental but also with loneliness and neglect. I know some people have suffered far longer than me and maybe not knowing anything different would make it easier to cope with but I know of no way to compensate my life to make it remotely worth living.

I often wonder if others feel the same or whether they have managed to avoid the sort of situation I find myself in.

"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Topkitten, thank you for taking the time to share this with us all. I am sorry to hear you are struggling at the moment, things certainly don't seem easy. 

    If there is anything we can do to help then please do let us know. I hope you have a good weekend. :)
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  • chiariedschiarieds Member Posts: 7,918 Disability Gamechanger
    Hi @Topkitten I'm wondering if you might contact The Salvation Army? I've just been reading online about a 'Good Neighbours Scheme' https://www.salvationarmy.org.uk/edie-shares-her-story where this elderly lady is visited weekly, so if such a scheme were available near you, as you're housebound, then visits for you too might be arranged.

    I have a genetic disorder (but didn't know about it for decades), which has resulted in generalised osteoarthrosis & painful neurological problems. Not knowing about it when I was younger meant I went ski-ing for example, which probably wasn't the best thing for me to do, but was wonderful! But at least I did some things that perhaps another person growing up with different problems may not ever have the chance to do.

    It's hard to know, but I think it feels like you lose one thing after another that you used to be able to do, but you're still the same person inside (& young in your head too!)

    Take care.
  • MisscleoMisscleo Member Posts: 646 Pioneering
    Me too.
    I used to do loads of things that I can't anymore.
    A neighbour has complained to the council that I can't do my garden as well.
    Iv tried to find a charity that could help me with my garden I only need 2/3 times a year.
    I use my garden for my.health, but now &then I need help.
    Age UK. Promised for 6 months but they didn't do anything all boosting wasted my time.
    May be salvation army could help me 
    I'll mail them 
  • chiariedschiarieds Member Posts: 7,918 Disability Gamechanger
    edited October 2019
    Hi @Misscleo I do hope The Salvation Army can help you; it's worth a try.

    I love my small garden....it's not much, just raised beds; one with herbs; one with flowers, & 3 for growing vegetables + lots of containers. This year my joiner added a small greenhouse & trellis for me. I know what you mean, a garden undoubtedly helps your health.... it gives me a reason to go outside, &, as I rarely go elsewhere, it helps me enormously.

    3 years ago, in addition to everything else, I fractured my hip. When I got home, having to use my elbow crutches even in the house, I looked into my garden thinking I'd never get out there again.....but it was the garden that got me out.

    I do hope you get the help you need with your garden.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Thank you people, I appreciate the replies.

    I'm stuck really. My house has only had adaptions as far as a wet room and an odd rail or two. However, the corridors and doorways are too narrow for a chair and I really shouldn't walk at all due to neurological pain at excessive levels. I don't even have ramps to get a chair in and out. I am in an unfortunate situation as regards pain medication as although I can tolerate very very high levels of opiates I cannot tolerate neural pain killers hardly at all. Consequently I spend almost all day and night in a recliner chair. I requested an assessment by Social Care in April 2018 but it wasn't done until March 2019 due to extreme continued incompetence and even then the report made no sense due to Social Care still covering up mistakes made 2 years ago. It seem these people never forget. A month ago I was reassessed by SC and they agreed I need help and need the report rewritten but I have heard nothing so I guess they never meant to do anything just shut me up.

    With walking being so painful I haven't used my garden in years but at least the council keep the grass down, just wish they would get rid of the weeds on a badly laid patio,

    I will try to be more forward thinking but at the moment I have pretty much given up trying.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • chiariedschiarieds Member Posts: 7,918 Disability Gamechanger
    edited October 2019
    Hi again @Topkitten I'm with you on being able to tolerate high levels of opiates....I had a very understanding GP who believed me when I said with Fentanyl patches they barely lasted 24 hours (instead of 3 days), so he suggested I had one on each arm & change 1 daily. When I knew I was going to move house, & therefore have another GP, I decided to slowly come off them. My current GP has me on the highest medication level he can prescribe for my neurological pain, which only dampens it down a bit...but, unlike yourself, I do at least get some help from these meds. I'm in pain as soon as I'm upright, & sitting worsens this. Such pain I know is an awful thing & wears you out.

    You do seem to be in a dreadful situation. Has your GP tried different meds to help with your neurological pain? We're all different, & some work, & others we can't tolerate. Might you consider cannadidiol? This is cannabis without the THC component that makes you 'high' & is legally available in the UK just sold as a 'food supplement.' Cannabidiol can also help some with mental health problems.There are other avenues to explore.....

    Can you change your GP & request an Occupational Therapist visit to assess the difficulty you're facing, being literally stuck in your house?

    Might you consider The Salvation Army? I don't know if they might advocate for you....

  • MisscleoMisscleo Member Posts: 646 Pioneering
    My council hasnt been of any use with my garden.
    I.think it's getting to speak with the righ person.......Im still trying to find him/her
  • herroabiiherroabii Member Posts: 20 Connected
    I might be of no use to you but, I'm 24 now, I was housebound from 18-23 long story short my medical record got mixed up with someone elses, I had physical issues, they had mental issues, so I was seen by a number of people who thought I had solely mental issues. This obviously didn't work as I kept getting physical issues so I ended up on lorazepam for a long time. In the end they figured out they'd messed up, I ended up receiving a ton of the right medication and I started going to a group. It's horrible, I really feel for you. When I'm ok as I will be, mine sort of go worse and are incurable, I want to be a support worker for housebound people because honestly unless you've been there ( aimed at social workers ) you just are clueless to how much it hurts.  I know my illness and stuff is irrelevant, just I know sometimes it helps to know other people have similar issues, and yes we know how bad it sucks. As for social services, it's just as off where I live! Mine FORGOT to put through something meaning none of mine actually got paid for a year!!!!!!
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @chiarieds, I basically went through the same with the Fentanyl patches but I had to work mine out on my own after suffering memory loss and blackouts from draining the patches too fast. I figured out to change them 1 a day in a 3 day cycle ( I used 3 patches totaling 125 microgrammes / hour) and then had to tell the GP to stop them altogether when I was going through withdrawal 2 days at a time. Instead of helping with working it out all I got from the GP's was to blame my problems on not taking the meds as prescribed. I do know that at least Buprenorphine is available in tablet form so I assume Fentanyl is too but my GP's are too stupid to work out using them as replacements unless I tell them it needs to be done. As opiates are of little help I haven't bothered. I do have one advantage over you though and that is that I cannot become addicted to ANY medication, opiate or otherwise and withdrawal, though uncomfortable, is easy to get through so long as it isn't continuous as it was on the patches and this means that I could just stop / start opiates at any time and at any dosage with minimal side-effects. Btw, I timed the rate of exhaustion of patches and it was 7 hours for a 25 Microgramme, 14 hours for a 50 and 20 hours for all three at once (2 x 50 and 1 x 25), those timings work out as over 900 microgrammes / hour and that's what caused the memory loss and blackouts..

    @Misscleo, sorting out the garden is an optional service and I don't think all Councils support it. It used to be free here but now is charged for. Contacting anyone in Housing Support should be enough to find out if it's available.

    @herroabii, as I stated some are worse off than I as I was pretty much healthy until I was 49. In a way though that hurts me more, knowing I used to be able to do so much that I cannot do now. Being healthy meant I was able to be married twice and have three children. Unlike me though they do not support me the way I supported my Mother. Perhaps family values no longer exist?

    I know I should change GP Surgery but I have been with ALL 6 local ones and had problems with them all in different ways. They are not really happy to take on housebound patients and have no procedures for it and there is also the problem with changing the source of delivery medication. I know it can be done online but my existing system involves a chemist located in the same building as my GP and who are also included in their computer system. I'm worried that if I change there could be issues and I cannot cope without the meds I can take as without them the agony persists even when lying down. So much so that I simply cannot do so. The meds might only take the edge off but that edge means that at least I can lie down mostly in little pain. Sitting, standing and walking (in that order) sends pain through the roof to levels I never understood existed. Even the ambulance "gas & air" combo is useless (I know this because I've tried it).

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • chiariedschiarieds Member Posts: 7,918 Disability Gamechanger

    When I fractured my hip, I also found the gas & air treatment I received whilst waiting for an ambulance, didn't work; nor did a nerve block once admitted to hospital. I had said that local anaesthesia doesn't work for me, but they wanted to try!

    Like you (well at least if I lie down for about 30 mins), my pain eases, but just starts all over again within less than a minute of standing. We're sorry mortals indeed.

    I 'think' Drs. are often at a loss when they feel they can't help you; they hope to solve problems, but if you have intractable pain or a disorder they can't help, they don't know what to do.

    I'm truly sorry to read about all you're going through, having some understanding of the pain you're experiencing. I know that you feel you have done all you can do, so who am I to say more? I wish there was an advocate to better help you. Anyway, I would always appreciate hearing how you're doing any day.
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