The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

Oh MNHQ are very kind! They just changed the name outing me instead of having god delete the whole post! It does mean I duplicated so, sorry bout that. Shall I blame the drugs?! Thank you MNHQ!

fishandjam you found us! So sorry for the diagnosis, it sucks knowing it's going to be here forever. I am slowly realising then denying that this is going to be a problem forever, sometimes I am so like fuck that shit and determined it won't get the better of me, and simply refuse to let it stop me living my life, and other days refuse to accept it's never going away, following by realising that good days, bad days, it is nevercg no away and I get very down.

I love diazepam! It has seriously made the difference between this being horrific, and only a bit shit. I am walking stiffly and like a robot, but I am moving a bit. Have leg pain, but as bad as it thought it would be. A gentle day today.

reviving I do that all the time with name changes. Forget to change back! This time I gave my real name you need to take it all so easy. If you are having a backwards step, slow down. Use some heat, take your painkillers, maybe go for a gentle walk but nothing more than that.

cowmop I had jam sarnies, quickly made DH got me some left over risotto later but by that time I was full! and high as a kite

Oh dear, tales of woe as soon as I turn my back! Do hope you are all feeling a bit better and enjoying your drugs weekend. It's so bloody frustrating.. Just a hint of normality and it all kicks off.

I am on question no 10 of the dreaded PIP form. That's page 23 of 40. Have been granted an extension on getting it back as doing it within their timeframe was impossible. I'm trying to do one question a day and have typed the whole lot up. Unfortunately that means sitting. When I'm doing it for 15-20 minutes I get absorbed but am in agony when I stand up. Meh.

Also was randomly sent a new ESA form with no explanation. For those who are not following my life story with bated breath, I have been waiting for an ATOS medical assessment since last March. So I call up to ask about the new form (it's a whole book) and say I've been waiting for a medical and or decision and the girl says after a long pause 'so don't you want to apply then?' How are we meant to remain calm and polite??!! So I call ATOS and am told I will hear 'soon'. No further information can be given.

It's a damn good job I haven't actually starved to death in the meantime.

Off for drugs now. Went to see the Fascinating Aida last night. Bloody hilarious. Here's their most famous song but there were loads, all fantastic.

m.youtube.com/watch?v=HPyl2tOaKxM

Welcome to newcomers. Sorry you had to join our club but their is, I think, some comfort in not being alone.

Oh, and big slaps on the wrist for me...my physio says I've burned my back with my patches. Must apply to vest not skin.

There, not their.

matilda those forms are so bad, I suspect there are a LOT of people who are entitled to the benefits that just simply don't apply because a) they are encouraged to think they won't qualify by the wording of the questions (despite struggling with day to day living) and b) because it takes a lot of time, willpower, english literacy and if you have a disability that means you need to apply, likely pain, to fill it in. Sort of part of the test almost. I cannot imagine how hard it must be if someone is managing an illness that affects their emotional wellbeing. Not everyone has support or guidance to fill these in. I know there are support groups out there, but you need to know about them to utilise them.

I am feeling so so much better. Very delicate, like the slightest thing is going to have me back in bed not moving, but for now I am able to move gently, slowly and with caution, but moving nevertheless. I decided not to go for a walk with friends, they were very kind and took the children (but I am a little bit sad as they have gone to a beach, beautiful day for it, but it will make me sadder to go as this is the perfect weather for a sea swim, I can't imagine that zipping myself into my tight winter wetsuit would be easy!). DH is at work and friends are coming back here for dinner, so I have pottered and done a little tidying - before you tell me off, not hoovering or emptying the dishwasher, just a bit of moving some paperwork, moving plates from kitchen table to side and wiping table down, using my grabber to pick up some toys, dusting at standing level. Just enough to not feel completely useless.

Oh, and I had a bath in some new lavender and geranium natural bubble bath, and am now sipping some new Pukka cleansing tea. I have reduced my painkillers a little so I am not floating in a bubble when my friends return, and no diazepam today as that will just leave me blubbering nonsense and looking out of it. If I am having muscle spasms before bed, I shall take 2mg.

How is everyone else? Hope you are having an ok day? Any more improvements on the relapses?

What I can't work out is how the 'underclass' in this country are so able to claim benefit when the system has utterly defeated me?

Did I study the wrong subjects at school? Take the wrong exams?

It's a mystery.

pavlov I think you I might have caught your pain! Only stood up from eating tea and bam, some bugger kicked me in the bottom of my back and now I've got a painful leg and pins and needly feet to complete the trio. Deep joy. That's what I get for baking and cooking tea. Glad you're feeling more normal though!

Matilda I often wonder about all the forms. They seem mind boggling. My sil has MS and is terrible on her feet and constantly worn out and so doesn't work. She is bombarded with questionnaires and forms and told to report here once a fortnight and reassessed there every 6 months. It's a bit of a joke really when you see some of the folk on TV that seem to be able to claim everything. It seems like nearly a full time job for her! I hope you manage to slog your way through your pile before you loose the will to live .

fishandjam I think I've got a similar thing to you. They couldn't entirely decide at the hospital but thought a degenerative disc condition was most likely the cause of my pain as quite a few have gone or are bulging in different parts of my spine and also my sisters spine is the same in her lumbar region. Feel free to moan away, I know I do.

Have a relaxing Sunday ladies.

Argh, D&V today! Will post tomorrow.

you have to remember that this benefit scrounging group of people who claim everything under the sun, they don't really exist in droves, like they are portrayed to. The encouraged view of benefit scroungers in the daily mail etc is designed to make people shy away from claiming benefits to which they are legitimately entitled, and should get because we live in a world that looks out for those who fall on tough times for various reasons, out of shame. There is more money in unclaimed benefits than there is being paid to people claiming more than they are entitled to. More money is spent trying to catch people defrauding the system than there is wasted in people defrauding the system. In particular disability benefits. The approximate fraud rate for DLA/PIP is 0.5%.

cowmop sorry you have had a bad relapse! I hope it is not long lasting! I appear to have a catching type of back pain as several people at work now have bad backs

I took it fairly easy today and my back started to feel a lot better, then I suddenly got . bad case of indigestion which I don't normally get. So back in bed for the evening.
pavlov glad you are a bit better.
cowmop you will have to take it easy this time, hope you feel better soon.
matilda that is terrible about the forms, my friend has a m.h issue and is put off claiming by all the forms plus fear of not being believed. hope you get them all done soon.

That fear of not being believed, it's so horrible. I still have it now, some feeling that I am a fraud and need to 'man up' I kept expecting when I hadmy MRI and saw the neurosurgeon etc that at any stage someone would say to me 'there is nothing wrong with you'. Not helped I this by an Lester at the beginning telling me that stress/how my mind perceives it can make the pain worse(which, at the time, was the same as telling me I was making it all up and it really upset me and made me doubt myself). I still find now, when I am in low level pain in particular, that grinding you down but got to keep going because it's not so bad you can stay in bed level of pain, I wonder if it IS in my head. Because you can't 'see' it. Because I can't 'see' it. Maybe it's not real. I mean, I do not it is, but I regularly doubt myself even though I had surgery. I remember waking from the surgery fully expecting the surgeon to tell me there was nothing to remove, nothing wrong with my spine!

Bit stiff this morning but not bent double. I have stinging through my butt and legs, and into my groin which is bringing tears to my eyes, hopefully it will reduce as the day wears on as felt reasonably human by end of the evening yesterday. I guess I need my painkillers, taken them but they got to take effect yet.

reviving so glad you feel bit better too.

I am on a health kick! I am looking into food that have anti inflammatory properties, done this before but not with real enthusiasm 0, took much other stuff going on I guess, but now, being January, I am being healthy! To start with red wine has anti inflammatory properties, did you know that? I am ignoring the info I read about tomatoes and peppers being inflammatory, as that is a staple diet for me! I am drinking herbal tea, and appantly things like nettle and liquorice are anti inflammatory, so is peppermint. I am not going to be unrealistic and stop drinking coffee, which I drink too much of, but I am eating breakfast!! My skin has gone to shit too this winter to big big move to get my skin lovely. So porridge is big in my list!

pavlov, you have absolutely hit the nail on the head: I do feel complete shame to be applying for benefits. Thinking about it, it's ludicrous and outrageous to feel this way when I am so incapacitated and disabled.

It's also fucking outrageous that they can demand the forms are completed in such a short time when they, apparently have any length of time to 'consider' the claim before telling you to fuck off or sending you a new form to complete whilst, in the meantime I have literally no income.

It's truly draining and the fact that I have four separate 'claims' in progress, yes, it is a bloody full time job.

I feel a trip to my MP coming on. (Have yet to meet Zac Goldsmith, might be able to ask other, interesting questions on marital affairs and the life of the uber wealthy .

Health kick a lovely idea until you start to read the lists of items you have to exclude...my skin is rubbish, too, though. I'm sure it's the drugs. I also have hideous lines around my mouth like a 60a day girl, fro screwing up my face from pain. Laughed at the wetsuit thing. I might put that on my form 'donning my very attractive wetsuit causes great difficulties and I definitely cannot so so without the assistance of four strong men' .

Hey oh, the sun is kind of shining. Have the best day you can, everyone.

I have a friend who is completely unashamed to ask burly surfers to help her out of her wetsuit after a surf, its part of the reason she goes alone I am sure of it

I am not really going to exclude too much from my diet, I don't eat red meat, and am relatively fussy about what I eat so I will starve if I am too much more selective! But, will definitely increase the things that are good, and things that I love but don't eat much of are good like avocados, green veg, which we need more of in our diet here.

I have a thread about bad skin! I shall post a link to it, but the best tip I got was to be vitamin e capsule, eat one and cut the other open and spread the content on your skin. I have to say, it's working a treat, and it's meant to help soften wrinkles, Yey! Let's hope so. I also think it's the medication, or at least in part. I also think for me it's not looking after myself enough on the days I don't feel brilliant. And although they are not as bad as they used to be where some days I didn't eat at all, I am sure I don't eat as well as I used to. I am going to change that.

I really want to go for a run! Like really. A friend posted on fb that her DH has just done his first 10k of the year, and while I have never been a 10k runner, more like 2-3 miles, it makes me feel very jealous. I feel so unfit!

I honestly wasn't having a go about claiming benefits, just wondering how anybody who does cheat gets away with it or can even be bothered if my sil's experience is anything to go by. I think a job would actually be easier for her than the stress and constant to and froing she currently does, but she just isn't well enough and it's made worse by "the system". She has been to see her MP Matilda, I think he got her in touch with people to help fill the forms in.

I know what you mean about not being believed, I felt this most strongly at my one trip to pain management. All he seemed to care about was whether the pain was a symptom of depression and a lot of the questions on the form pointed in this direction as well. As a result I ended up being all jolly to try and show it was pain and not in my head and when we came out dh was really cross with me for not stressing how bad it is. TBH I don't think there's much they can do so it doesn't make any difference. I also get it a bit at school ifrom a couple of mums in the form of "oh, how do you manage that with a bad back?" type digs. The obvious answer being, well if not me who else? You do it despite the pain even when it's quite bad because A) there's no other option and the pain is there regardless and B) my children will only have one childhood and I can't miss it or have them missing out because of me. Maybe I'm reading more into than I should because I feel guilty!

A health kick is a good thing, does today's consumption of banana loaf and minstrels count?

wouldn't it be great if we could plug our doctors /partners /skeptical workmates in to feel our pain for twenty minutes so? I often wish I could do this with my very very patient but extremely horny other half when sex is the very very last thing on my mind because it will hurt a lot.

Haha, I'm somewhat with you both there. I was quite lucky earlier this year because my DH did do some incredibly minor very serious damage to his back. He did admit that it gave him some insight into my situation.Empathy Lasted approx twenty minutes...

I'm loving the idea that doctors should feel our pain. Maybe they should also experience a range of their clients plights...dementia, syphilis, obesity...we could have a vote each month for what each doctor should sample next

Hope everyone is in ok shape. fish is your tummy better?

Big question...will pavlov make it into work. Please not if not up to it. So hard.

I agree with a plug for colleagues, and Managers. Yes, managers. DH is relatively understanding, he has had back pain before, out for several days with it, so does understand the acute pain, but probably not that knawing, permanent chronic pain that stays following the acute pain. He does know how tired I get though.

I am off to work. I got ready in two minds, and now am wondering if it's a good idea, but, it's only 5 hours right? . I have so much to do today, I can't have another day off and let my colleagues take the flak, I am not popular with my comings and goings as it is.

I danced (ha! not sure you can call it that) to some music with the children to get my mood going and pretend there was no problem, instead of my normal exercises. Probably not the best idea in the world, but, I feel upbeat despite the pain, and that's half the battle yeah? I was like, fuck it, I'm in pain anyway, the children want to dance, so lets dance! Their faces as we bopped was prize enough for the payback I shall get for that! I don't do it enough.

I have taken some painkillers, charged my iPod so I can plug myself into music and not talk to colleagues when I am not seeing clients. I just hope my boss doesn't ask to observe my practice today (it happens randomly as part of our professional development, completely pointless imo). I have some numbness creeping back in which I am not liking, around my groin area, as well as my toes, it comes and goes, but had that before, and it's not 'internal' so to speak, it's the skin. I will keep an eye.

Hope you all have low pain days, and take it easy whatever you do today.

meant to say fish, do you take anti-inflammatories, are you taking them with food and do you take a stomach acid reducing medication with it if you do, like omeprazole or similar (there are a few versions I think). I am just wondering if the AI's have caused your indigestion. hope you are feeling better.

I am going back to work today too. It is only a pt job but as I say it is in a kitchen so must be very careful. Luckily my boss has been understanding and put me in as a helper to someone else. I can stop if necessary also my mum is going to drive me about so I don't have to drive as well. Good luck with your days all and get on with your forms Matilda x

reviving hope your return to work was ok, and as easy as it can be.
matilda any closer to finishing? You will need a glass of wine or two when your forms are done! or a holiday!

me. work was not a great idea. I am in a lot of pain. pain that travels from my back, into my stomach, groin, down my legs, into my feet. It is brining tears to my eyes and I have to catch my breath. I am walking straight though, so you really wouldn't tell from watching me walk, apart from it being slow and cautious, and occasionally stopping to wince. I stood up for much of my working day, which itself meant my legs ached and hurt, but, when I sat down, it was like sitting on knives.

But, I made it through, although I almost asked my boss to let me go home early and suggested I wouldn't be in tomorrow, but I don't want to look like I am planning time off, neither do I want to take tomorrow off now as I have not planned it and have too much to do, now thinking he will be cross that I didn't warn him! So, I shall go in. I have to keep going, as this is not disappearing any time soon [sigh]

And, I took DD to her diving lessons. And collected DH from work. Although I literally crashed as soon as we got in. We are now all about to eat Pizza in bed, as a family

My back is not so bad. I can bear that/control that relatively well with heat/AI/muscle relaxants if needed and painkillers but not this leg pain. My other nerves feel a little sore, not sure if it's transferred pain, or, DH asked me could it be something else more sinister ? But, I doubt it, just referred pain I guess.

Had enough today.

sorry, a proper moan.

I hurt. I really fucking hurt. I don't want to take high dose of meds as it will goof me for work tomorrow

But I can't get comfy

Oh no pavlov sounds like it is really bad, I think you should take the painkillers if you have tried everything else. You won't do a good job at work anyway if you are exhausted and in a lot of pain.