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To not know what career path to try and follow because of my health?

(22 Posts)
JustBeingJuliet Thu 27-Oct-16 00:49:00

Long story short - I have degenerative disc disease, had one lot of steroid injections into my spine which have now worn off, can have a maximum of 2 more then possibly looking at surgery. Also have long term issues caused by a brain injury almost 3 years ago, which led to a haemorrhage (headaches, extreme tiredness, memory issues etc). With my back, I can be fine for 2-3 months (well, not in agony but always low level pain), then be laid up for a few weeks followed by a month or two of functioning but in a lot of pain and in a lot of meds. My other issues are always present and just make me feel like shit all of the time. A locum gp last year said I'm displaying all the symptoms of fibromyalgia but my regular gp says it's all a side effect from the brain injury and I should be grateful that it wasn't worse. Which I am, but I can't function like this.

I lost a job last year due to having too much time off with my back and not being able to cope with being on my feet all day. I then took a working from home job, which I thought would be perfect but I hated it with a passion, plus sitting in an office chair at a computer for 10 hour shifts was killing my back and I was making mistakes due to being so god damned tired.

I'm now working 20 hours per week in an admin type job, but having to drive an hour each way in rush hour traffic, which hurts like you wouldn't believe. At the minute I'm in so much pain I don't know what to do with myself. Cold weather always seems to trigger my back off and where I'm working is very much a mix of being in a nice warm office and being outside on site in the cold.

I just want to cry. No, scratch that, I am doing. I'm a single parent and need to bring in an income, but I just can't cope with being in pain all the time. My gp has prescribed my antidepressants as he says my mood is low, and I felt like he was fobbing me off and thought a lot of it is in my head. I probably am depressed, but I wasn't before my health problems started. I just don't know what to do. I can't sit for too long, can't stand for too long, driving too much makes my left leg go numb and I can't get out the car then, yet sometimes I'm fine and can do my job ok. I'm not disabled enough to be disabled, if that makes sense, yet I'm struggling to cope with working. I need to find something that I can do that brings in a good enough wage but I haven't got a clue what.

Sorry for the long post, I'm just feeling utterly miserable right now.

fabulousathome Thu 27-Oct-16 00:58:41

Something from home so you don't need to go out? Can you teach some kind of craft? or tutor from home?

Could you start a home based business, perhaps with a friend?

I used to know a lady that sold party stuff from home. She supplied items for party bags, the bags and other stuff that kids used for parties. It was appointment only.

Do you have any special talents that you could pass on, for a fee, to others?

I know of someone that works as an administrator for a Private Health company. She works when she wants to fit in with school hours. Not sure how she got the job though.

EveryDayIsASchoolDay Thu 27-Oct-16 01:01:15

Hi Juliet sorry to hear about your problems. It sounds horrendous. Could you speak to CAB or something similar to advise if you would be entitled to any financial assistance (pip, esa etc)? If you had some help then the pressure to work x number of hours a week could be reduced. It sounds like you need to only do a few hours a day. 10-2 or similar to avoid rush hour. Probably being in an office or at home is better than outside/onsite somewhere.
Before I had to take early retirement due to ill health (in my very early 30s) I went from ft to 4 days in wk and 1 day wfh, then only working 4 days then down to 20 hours over 4 days. Then a huge period of sick leave to now. It's hard going and I certainly can understand you feeling down.
I hope you can find an appropriate "body" to speak to for advice. Good luck xx

EveryDayIsASchoolDay Thu 27-Oct-16 01:02:47

For you op wineflowerscake

JustBeingJuliet Thu 27-Oct-16 01:04:04

I'm utterly rubbish at crafty type stuff unfortunately, unless it's painting furniture or building stuff but I'm a bit restricted when I can do that eyes flat packed stuff that's gathering dust in the corner of the living room and wall that needs decorating when I'm well enough

I've thought about trying to do some admin type stuff from home, but really need to hit the ground running so to speak and earn enough to feed us and pay the bills. I've even thought about becoming a student and getting a degree in counselling, as that's something I've always fancied doing, but not sure how I would finance that!

JustBeingJuliet Thu 27-Oct-16 01:08:43

Everyday I claimed esa briefly after losing my job last year, but was then told, after an assessment, that I was fit enough for work. Also got turned down flat for pip as I'm not bad with my back all the time. My other health issues are always present, but I can cope with working part time, it's just when my back flares up that I can't. It's just so damn frustrating. I've always worked full time and I feel like I should be able to cope. I've got 30 years til retirement age and I can't even think about feeling like this for that long sad

ThatIsNachoCheese Thu 27-Oct-16 14:25:02

Your post really resonated with me as I have suffered from debilitating back pain since a fall 3 years ago.
I've just had surgery and had 6 months off work. I'm in worse pain than before the surgery and am just back at work.
I have to work, I know I won't get ESA or PIP as they're so difficult to get, but I have no life at the moment.
The only thing I have that may help is a sit stand desk which is coming next week. Do you think that one of those may help?
I'm so sorry youre having to deal with all of this. It's completely all consuming to be in pain all of the time flowers

JustBeingJuliet Thu 27-Oct-16 20:50:42

I think if I were sat all the time, one of those desks might help but my current job is a mixture of sitting, standing and jumping in and out of cars. I've not been in this job long and I'm terrified of losing another one because I can't manage it, which means I'm pushing myself to do stuff that's hurting me even more. It's a vicious circle. What employer is going to want someone with back problems who is likely to take huge chunks of time off, when there are 50 other people after the same job? It's so frustrating. I just can't imagine what I'm going to be like in 30 years if I'm this bad now sad

SheepyFun Thu 27-Oct-16 20:59:55

That sounds really hard. My only thought was, if you're working from home, do you need to use an office chair? I have minor back issues, and find using a laptop on my lap while sitting in an Ikea bouncy chair much more comfortable - my husband used to have a bouncy chair at work because it was better for him too. Might that help you to work at home for longer periods of time?

JustBeingJuliet Thu 27-Oct-16 21:20:20

When I was working from home, the company provided a chair, desk and desktop computer, so I was tied to that for up to 10 hours a day which all but killed me. I'm now working less hours with a mixture of sitting and standing, but I'm still struggling. I just need to find something I can commit to long term, which isn't going to make my health any worse, and which brings in enough money to live off, but it's easier said than done.

fabulousathome Fri 28-Oct-16 18:48:28

There are many, many counsellors OP so may I respectfully suggest that it's best to be sure that you could earn a living before you embark on a degree in this.

Google to look for counsellors in your area and see how many there are around to compete with.

Do you have any friends that want to start a business? They might have the skills and you the admin experience. I can see it is very difficult for you.

JustBeingJuliet Fri 28-Oct-16 22:05:34

It's just something I've always fancied doing that's all. To be honest, I'd be prepared to retrain to do anything if it meant I could work without being in agony.

H3ll0w33n2016 Fri 28-Oct-16 22:23:23

If you work in an office you could ask your employer to provide you with a specialist adjustable chair

If you work in an office you could ask your employer to provide you with a desk that moves up and down, so that you work sitting or standing
Evidently there are studies that have proved that working standing up can improve health
I think in the future all new offices will have this type of desk installed

There are costs involved, so your company may need to investigate

I have experienced an injury in the past. I returned to work and I was still in pain for a couple of years. However I was lucky that working took my mind off the pain. I would try to stay working as long as you can. I think being surrounded by other people helps. When working you may also receive other benefits from your employer.

Would a car share travel to work help ?

JustBeingJuliet Fri 28-Oct-16 22:45:11

It's not an office as such, more on the counter so it's fixed terminals that I can sit or stand at. To be honest, there's no chair or desk in the world that's going to make the pain go away as it's constant even when I'm at home lounging around. I'm just feeling sorry for myself at the minute as I'm in agony and can't even get comfy to sleep properly.

MeadowHay Fri 28-Oct-16 22:50:13

From what you describe it really does sound like you are entitled to PIP, and possibly ESA as well, although ESA would be more difficult.

I strongly advise you to apply for PIP again. Did you get any help with your application? CAB can help you fill in the forms, and if you get knocked back again they can help you appeal the decision. I know I'm making a snap judgement here based off little information but I know PIP quite well and I really think you would be eligible for some of it. There is some really good info on the CAB website about PIP and eligibility, maybe something you could look at if you need more info? Another charity who could help with a PIP application would be FightBack. Also just to clarify you can claim PIP whilst working.

I can't really help you in terms of jobs unfortunately although I don't think what your doing now sounds suitable at all given that you are having difficulty with the travel to/from work and the repeatedly getting into and out of cars. I think it sounds like you need something where you stay working from home or stay in an office and not so much rushing about moving like that. A sit-stand desk sounds like a good idea, as well as the most ergonomic chair you can afford. There used to be a fund that would pay for alterations at work for disabled people but if I'm remembering correctly the Conservative government scrapped this, otherwise it would have paid for you to have a suitable desk, chair etc.

As a disabled person your employer is obliged by law to provide you with reasonable adjustments to your work place. This could mean more suitable equipment (chairs etc) for the job, or for example splitting your breaks up into smaller, more frequent breaks if that would be helpful, or even adjusting your hours slightly (could you come in earlier and leave earlier or anything like that to avoid having to travel for so long?).

I really feel for you and it's a stain on this country that someone like you has been denied PIP when the whole point of that benefit is to support people like yourself!

YelloDraw Fri 28-Oct-16 22:51:37

Too sick to work full time... and too well to receive incapacity benefits. It is a shit place to be.

YelloDraw Fri 28-Oct-16 22:53:28

I honestly don't know how people in these situations manage. flowers op

JustBeingJuliet Fri 28-Oct-16 23:00:25

Thanks everyone. Meadow I didn't get any help, no, but I might make an appointment at the CAB and try to apply again. It just feels like I'm giving up doing that though, if that makes any sense? I don't want to be claiming benefits, I want to be well enough to work. I hate feeling like this sad

Eehbaguhm Fri 28-Oct-16 23:02:45

If you haven't already then it may well be worth arranging an assessment from Access to Work. They provide adaptive equipment to help people with disabilities at work, no charge to the employee and often not one to the employer. You could also look into whether there are any retention schemes available in your local area from organisations such as Remploy; your JCP or CAB could advise on this possibly. Support is available to help people with disabilities remain in their roles via these schemes, they can look at reasonable adjustments or help with sourcing an alternative role if necessary. Good luck.

HollaHolla Fri 28-Oct-16 23:03:38

Hi OP. I've got a similar history. Three surgeries (disc removal, laminectomy, nerve root decompression) in the last 2 years. Started when I was 37, and now 41.... I'm in constant chronic pain, with permanent nerve damage. I feel it - it's shit.

Pain and chronic conditions aren't competitive, but, for me, working is what keeps me going. But this works because work want me there (I'm really very good at what I do! I sound like a Dick!)

I do a 40-50 hour week, with a 90 min commute each way. I manage on a day from home every couple of weeks, a posh chair and varidesk, and a balance of drug cocktail.

For me, my mental health is so much worse if I'm not at work. I've only had 2 days off in the last year - although I'm about to be off for injections again, so 2-3 days again. I don't sleep, and am always in pain - and totally shattered.... But what's the alternative? I know I wouldn't get any benefits.

Can you work with your employer to find a way forward? Maybe some adjustments and a balance of working from home? A bit more standing/sitting balance, and am opportunity for 10 mins of pilates every lunchtime? Just some thoughts. If you and they both want you there, you can manage a way forward. Good luck.

HollaHolla Sat 29-Oct-16 10:27:38

Also - I've found it's really absolutely worth the effort (and fight) to find a Pain Consultant who really 'gets' you, as an individual, and is willing to work with helping you find your balance. I went through a few who weren't willing or able to understand me.

MeadowHay Sat 29-Oct-16 15:02:23

I'm not at all suggesting you should totally give up work. Benefits and work are often not either/or situations. PIP is not an income-based benefit; you can work and still claim PIP. It exists to help you with the extra costs of having a disability. You don't need to quit work to claim PIP. If you want to continue work, and are able to continue work, then I totally support you in doing so. I think work is often super helpful for people, but it has to be work that isn't doing more damage to your health and it doesn't sound like what you're doing right now is particularly appropriate. But regardless, you can apply for PIP now, and continue working anyway, it doesn't look at your income.

I would recommend looking at FightBack and the CAB website first and starting your PIP application asap. I'm still busy filling out my 'how my disability affects me' form and I've had to get an extension on it because it's taking me so long to complete, and at the moment the wait from when they receive that til you get a decision on your claim is twenty-six weeks. So the sooner you start your application the better because it will be a long time before you receive any money from it unfortunately.

Also have you contacted Scope? They might be able to give you some advice on PIP/benefits and/or employment as well. They're a charity for people with physical disabilities.

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