Hi, I also suffer from epidural fibrosis following spinal surgery, i have constant pain in my lower back as well as nerve damage in both legs, my feet are numb and tingly all of the time, I am taking strong medication constantly, everyday, I am unable to try physio and hydro as I did before the pain became to bad, I have to have my partner help me wash and dress, I have accidents that are out if my control, am Now being told that I am able to work, all because my mental state is OK, even though I slumped into depression about a year ago, all due to my back problem and not being the person I was. Can anybody help and tell me what kind of job there is that doesn't involve, bending,lifting,sitting or standing for long periods, plus employers that don't mind me taking time off sick due to back pain, is there anybody that has EF and has found work they can do, just so I can have some idea.
Kind regards ☺️
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Kellee75
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Hi, I have not yet appealed the decision, I was asked to find others in my situation and find out what work they can do also with EF,my head spins in confusion as I receive enhanced rate of mobility awarded by PIP, SO SLIGHTLY CONFUSED!!!!!
Are you on PIP? Who was it who said you were fit for work PIP or ESA? Either way you need to appeal the decision ASAP you shouldn’t be working or at least not working out of the home.
Do you have any qualifications that could get you to work from home? X
Hi, yes I am in PIP, I receive the enhanced rate for mobility, unfortunately I do not have any qualifications to work from home, yet my next interview with universal credit, they want to discuss the decision made about me being able to work and to see what work I can do that suits my ability,
Kellee75, it's Fancy1959. Could you please tell me who has decided you were okay to work because your mental state is okay? Obviously this person knows very little about the many different pain related, numbness and tingling, inability to stand for long hours or squat for any length at all and incontinence to boot that MS can wreak havoc on us with. Once you let me know who this genius is who has decided you can go back to work then I will have ideas for you. Please get back to me when you're able and then we will brainstorm some ideas together. Until we speak again please take care and remember together we are stronger. Fancy.
Hi I asked for help to get a job that wouldn't make my condition worse, that was 5 years ago and I'm still asking now I am 62, I've been told you cannot get any help in training or job because you are to old and Disabled, so I'm in a job that is making my condition worse slowly. Two weeks ago I got a email from Anna Soubry's office that £250 million is being put in a scheme to help the over 50's and Disabled to get in work. The scheme will come into force in 2028. I bet they spend all that money in setting it up. So and bother them at jobcentre, and any other people who say they are to help you.
Thank you for your comment Jeffmett, can't believe they expect you to work, yet are unable to find anything that suits you, I agree that the scheme will still not benefit anyone who is classed as disabled, but who knows, if I could work and my body would allow it, then I would be able to return to the job I was doing before my spinal surgery was done 2 years ago, but unfortunately I am not, so I am unsure what they expect of me with regards to working, I am going to start the appeal against the decision they have made about me, I wish these people could live in my body for a while, just to see what it is like living in constant nerve related pain, that disables me day in and day out, here's hoping!!!! 🤪
I have a very similar condition, and I managed to find 1 part-time job a few years ago. Very flexible hours, and I worked from home almost all the time. I haven't found any more. I'm considering studying video game programming, or just programming, because apparently one can work from home doing that (a friend of mine does).
I'd see if you can find a counsellor/therapist/pain psychologist to talk to about the changes in your life. I fell into a massive depression when I became disabled, because I essentially lost my whole life. Eventually I went to a counsellor, and she she helped me to grieve my old life and begin to look forward.
Your words are comfort in what seems an impossible time, could I ask what kind of job you were able to do part time, I would love to be back doing the job I loved so much and that was a carer, I was able to make a difference to the people I cared for, depression also hit me as I felt like my independence was taken from me also, I am attending pain management who I also hope to help me overcome the fear of living the rest of my life In Pain, Fingers crossed that I am able one day to find something that suits my capability without causing me further pain x
I hear you. It's awful to have your career, hobbies, etc. suddenly taken from you. You're still independent, tho, in every way that counts - mentally, spiritually, etc. Needing to ask for physical help sometimes takes some getting used to (I was massively independent before my back injury), but people who care about you won't mind helping you out. You will probably need to grieve for awhile - you've gone through a big loss! If you can get some support, it would probably help. Give yourself time. Once you're starting to feel better, try thinking about what you might want to do in your new life. In a way, this is an experience that few people go through - a second life to plan, when you're old enough to have a good idea of how life works, and what you want to do.
Dunno if that's any comfort. I try to think of it that way (I don't always manage it).
I used to be a field geophysicist, but hiking around putting seismometers in is no longer my forte. :/ I thought about my transferable skills, and realised that a lot of what I did was research and writing, so I looked for research assistant jobs. I was lucky to find one.
If you love caring for people, is there a less physical caring profession you could switch to? Counselling, perhaps? If you're in the UK, you can take counselling classes at a lot of 6th form colleges. I'd love to become a counselor who helps other people through life transitions like this, or perhaps through adjusting to chronic pain. Unfortunately I have 0 money, so.
My back injury happened 10 years ago, and I've found that I've adjusted somewhat. I pace better, I do a lot of stretching, some physio, etc. Massages were great, as was osteopathy, when I had money. Oh, and hydrotherapy 💓. I find that a TENS machine and heat helps a fair amount. I've also learned how long I can sit/stand/walk for, and how long to rest before trying again.
The pain clinic may well be able to suggest other meds, and perhaps some interventions (spinal injections, a denervation). I found relaxation exercises helpful too. A lot of what I found helpful was just learning about chronic pain. Try searching for Lorimer Moseley on YouTube. He gives really good explanations of what chronic pain is, how it affects people, etc. (because it isn't just pain, as you know! It's a massive change. Most pain patients get depressed, at least at first. My pain consultant put me on anti-depressants the first time I saw him.
Chronic pain patients often get scared of moving because they worry that they'll hurt themselves more, but most of us won't cause more damage by doing physical things (although I can set off spasms...) We tend to catastrophise too (e.g. My life is over, I'm going to be in agony for the rest of my life), but we can use CBT techniques to stop thinking that way over time. We also tend to do too much on a good day, which causes the next day to be a bad day, when we can't get much done. On the next good day we try to catch up and do too much, causing another bad day! If we keep up this cycle we tend to get weaker over time. Pacing is the key to keep this from happening, and I find it to be one of the most useful things I've learned.
Distracting ourselves is also a useful way to deal with pain. Video games? Listening to music? Ever wanted to learn crotchet? I've become quite good at spinning wool and knitting. Sometimes I make a bit of money by teaching others. Craft groups are a great way to get out and meet people, as are political groups, discussion groups, etc. Please don't become a hermit; isolation is bad for your mental health.
Is there something you've always wanted to learn, but never had time for? One of my chronic pain friends tried calligraphy, and it turns out he's good at it! Now he makes money by creating wedding scrolls and other similar things for people. He also makes funny little stop-motion videos. Ever wanted to write a blog? You have time right now. Don't push yourself too hard, though!
With respect to always being in pain, it is difficult, especially at first, but over time you can learn how to live with it. Chronic pain is actually fairly common (up to 2/5 of the population have it!), and people generally come to some kind of accomodation with their pain. You can too. Over time it may even get a bit better - mine did.
My Pain Management Programme suggested that instead of thinking of the pain as a big scary enemy, think of it as a small, fierce little kitten. It's really scared and it's decided that you're safe, so it's attached itself to you with those sharp little kitten claws. No matter what you try, you can't seem to get rid of it.
Sometimes it's sleepy and kinda cute, other times it's whiny and annoying, and occasionally it gets all mad and hisses at you. It's a bit tiring and inconvenient to carry it around, and you have to do things differently now that you're holding it all the time. When it's really mad it'll dig those little claws into you, and you'll probably have to stop and take care of it (and yourself!) for a bit. People might look at you a little funny sometimes when they notice it 😼, but whatever. You can live with it, work around it, get annoyed/angry at it, maybe even feel some compassion for it, but it's not bigger than you, and it doesn't control you.
I found it helpful to stop thinking of it in an adversarial way.
Hope something in there helped! Feel free to DM me.
I'm sorry that you are going through so much, and having to worry about work and paying bills doesn't help. Don't know whether this will help at all. I am a finance assistant and my wonderful employers enable me to work from home. It involves using spreadsheets and online systems. I don't need to use a printer. My pain eases when I am sitting down on the sofa, so I have the laptop on my lap and am able to do my work. I get up and walk around for about 2 minutes every hour (can't walk for more than 2 mins at a time). The pain wakes me up at about 4.30 am and I have to get up. I then take 1 Lansoprazole tablet and have my daily dose of caffeine aka a strong coffee. I then start work at 5am. I have found this works for me, I am on slow release morphine and the drowsiness and nausea hasn't kicked in yet at this time. I then work until 12 noon and have an hour for lunch and then work until 2pm. This really works for me as I then have the whole afternoon to rest and relax. I keep in touch with my colleagues at work through Skype and we have little chats throughout the day. Hope this has been of some help xx
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