The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Had a fabulous afternoon. Strangely nearly everyone looks just the same. Handbag was complimented! Business idea has legs, I feel. Pity I don't actually have any relevant skills. Perhaps I could just advise.

maizie, that all sounds very positive. How long are you in Surbiton? It's round the corner from me. Let me know if you fancy a coffee when you're feeling better.

pavlov. The Festival Queen. Jealous.

It's so important to have things to look foward to. Must schedule something. though have neither income or money in the bank.

Have just gone completely mad. Have emptied and crushed ALL my medication for the week. I've had enough.

goodness??? Hope you are ok.

GoodnessKnows - are you ok? Are you on your own?

goodness lovey, that's seriously not a great idea. You won't be speeding up your recovery. Come back and talk to us.

I'm a wee bit worried about you. Talk? Please?xxxx

We all understand.

goodness it's shit being on meds. It really is. But you need these now. And you need support to reduce them. As others have said, who is with you? Can you talk to them? Talk to us. Do you have any reserves to take, or did you crush them all?

Bless you all. Sorry you were worried. I had a serious wobbly. Just wanted the whole tumour-emotional trauma, op, cancer thing, CT repeat to be done with n swept under the carpet. Sick of everyone saying how surprised they were that I look so well. I know they were sincere and normally it'd be a commie t. But my emotions had not caught up w my physical recovery (stagaringly rapid, thank gd). I found it too much but find it hard to sound anything but ungrateful if I mention it. "You're doing really well!" is all I hear. No. I'm not. Not really. Not emotionally. It's all on the surface. Inside, I am still in shock and confused. It's like my head can't catch up with my body. My head is only just going through the op. I know that sounds weird. I don't want to spend any time with my children (sad and shameful). I don't want to go near school even if not driving. Can't face pity smiles or questions. Can't bear people thinking all is fine as I look ok. But neither can I get it through to people.
After DH thought he'd need to get me sectioned for crushing my pills (which was because I don't want to continue with the reminder of everythkng SIX times a day, with no pain to substantiate them.
He called my parents who called a dear friend of theirs who had been through a similar reactionary thing, apparently. She called me (my mum's age) and I had a cry to someone who understood. I had thankfully cut down pills, according to voluntarily sought out pain team advice, enough to be able to eke out fresh meds for another week. I'll take my bag of crushed stuff to GP to show him, when he tells me how well I'm doing, how I'm NOT feeling it. Maybe. Rather that, than he thinks I'm stashing it. Lol
It can't be that unusual of a thing to do if my mum's Friebd did the same with hers? Or am I loony? Lol

Anyway, all this probably explains my inability to read or absorb what you lovely lot are writing and I'm so sorry. I can remember the reunion stuff but all medical thjngs are just tippexed out. It's like I just can't see it or take it in. I'm maxed out.

goodness ok so you have enough meds to not be in pain or struggle with withdrawal from the lot? TBH that is what I was worried about, that you were left, over the weekend, with nothing to take. I do completely understand how you feel. I have said before, felt bound by drugs and I have several times chucked stuff away in a defiant 'i'm not bloody well doing it' moment. Refusal to accept it. That is fine. You have been through a hell of an ordeal, of course emotionally it's not over. You had no real time to deal with anything emotionally, so that is going to hit you now. You are not a loon. You are human.

I, for one, totally and utterly get the whole thing of looking fine and feeling rubbish. Physically and emotionally.

Counselling has been a bit helpful. Maybe something to consider?

Don't feel bad about the dc(ok, I know you do, so just try not to). You are a great mum but currently unwell. They are fine. You will be fine. Maybe a different kind of fine but still ok.

Hang on.xx

Pavlov, thank gd I'm not the only med-chuck wobbly-thrower!

Matilda, thank you. Xxx

How you feeling after your reunion? Get the feeling that it was better than you semi-dreaded thought it would be. Bet u looked fab. Hope you felt fab too.

Hi goodness glad you sound okish and found someone to talk to. I think you are entitled to throw the odd wobbly after all you have been through.

I posted an epic tramadol fueled post earlier. The ipad ran out of charge and the charger pulled out, lost the lost! So, to summarise:

matilda hope you are doing ok after your lovely reunion, not in too much pain. Bet you looked fab!

maizie so glad the op was successsful, shame you didn't get to stay in but perhaps being with family will give you more TLC, sounds like you are being cared for. Hope your boy is ok in your absence.

sublime. your gp is fucking shit. Sorry. I was initially sent to osteopath via primary care route for back pain. They ordered MRI when caudial injection didn't work. They ran out of options after that when they felt surgery would not help the clearly seen disc prolapse but it gave me ammunition to take to the GP, to say 'look, I DO have a disc problem, here is the evidence, I need you to refer me to the neurosurgical route' obviously that's presuming it's your disc, whatever it shows, you will have an idea what to ask for, pain clinic referral etc. And, tbh, you should ask for pain clinic referral too. You might stand a better chance of someone listening then. If you get no luck. Go though PALS. I think they deal with GPs, if not, see who does and ask them to get the proper back pain management route followed according to PCt guidelines. It means fighting. but, you have to fight. I have sort of lost the will to fight though, I must admit, it's too hard.

goodness it's ok to wobble, ok to chuck your toys out the pram, but, don't make yourself physically ill because of it, it's not what you need. Are you normally quite physically active? I found when I stopped being able to move around (used to be really really active) and was not moving, hardly walking, i went stir crazy, like a caged animal sometimes. Not doing normal stuff can make us lose our sense of routine, energy isn't expelled and that's without all the other shit going on for you.

thanks for the virtual chocs and bears like ds would snap them up. He is still having a bad time. Dh is going to take him back to the doc on monday. Both of us had a lot of ear infections as little kids.
gosh isn't that a coincidence matilda- I am probably here for a few days but dh and i agreed we are just playing it by ear and if it needs to be longer it's fine. I think at the moment he doesn't another person to look after with ds so poorly. It would be great to meet you- that is very kind of you I like a good coffee now and again and I am keen on my tea too. Have you been to that great coffee selling shop in Surbiton high st where they grind whatever you want there while you wait. I grew up round here when there was only "Traders" on the high st- no starbucks or anything like that.

goodness you sound like you are having a really shitty time of it. Do you find it hard to let the truth out when people get it wrong and say the wrong thing- then it bursts out later with emotional reactions to things like the meds? You have been through a horrible experience lately- and one with several layers of trauma. You are doing amazing just to be where you are now, I dont blame you at all for going a bit crazy- maybe you had to express the craziness to move past it? Be good to yourself, you do deserve to be cared for and made better in all ways- mind, body, soul.
I am going out on a limb here but I sense that you feel guilty about this experience and conflicted about the meds because of this or maybe that is a way to express that and communicate to the people that keep telling you how good you look- why are they telling you anything, they should be asking how you are or feel- it's kinda a bit arrogant, although they probably mean well but the result is that they are upsetting you. I may have got it totally wrong but I relate to the frustration you are telling us about. I used to be an uber-active person, I used to be a gymnast at school, then as an adult I was a chef, very active, worked out 3/4 times a week, I nearly won an arm-wrestling bet with a 25 yr old guy, friends joked i was "freakishly strong like Monica on Friends" and now I am so far away from that it seems like a dream sometimes.

I am a terrible control freak- is anyone on here one too? I think it often goes along with people that need alot of exercise to feel "on track". I need some way to work off anxiety and stress of the day. I used to do yoga a lot too and I miss it all. I hope I can get back to some of it soon. Exercise won't make it all better if you are feeling depressed but it can help- well I can only speak for myself, everyone is different and all. The worst depression I ever had was after I snapped my knee ligament and couldnt do gymnastics any more- I never really realised at the time how much influence that event had to the next few yrs. I think I had been using the gymnastics to stabilise my mood for yrs- like a kind of self-medication similar to when people sometimes take drugs recreationally or drink to keep stable if going through some shit. I would never change my past though because if i hadnt had my knee injury I never would have met my dh.

sorry goodness i am rambling a bit (blame all the post-op drugs!)but it is coming from my heart if a bit jumbled. I have a self-destructive streak that gets its way sometimes. When i was younger I went through some stuff that made me want to look as bad as I felt- do you feel like nobody around you is getting the chance to see what you have gone through because it has been kinda "invisible" and now they think it's all over? but it's not and you are still in a healing process, it's not done yet. But it's not fair on you to make yourself ill or in pain to get through to them. It is your body and your right of course, but you dont deserve to feel awful, babe I hope some of your friends and family can give you a bit of love and support over the coming days and weeks- it sounds like close ones care the world about you- sometimes well meaning friends that arent so close get the wrong end of the stick. What you said about your head still being in the op- it's not weird at all- It can be just like that. I had a traumatic birth with my ds and I replayed the memory over and over, which sounds bad but it helped me to get my head sorted over it. Would your doctor offer any counselling for going through this- or is it not really something you want anyway. Sending you big hugs anyway- plus , and , oh and here's a bit more and another - repeat as required

this has turned into another massive post- but I am chatty as f*, sorry. I am so in awe of the stuff you've all had to put up with- I was getting pretty cheesed off and down and it had only just started to get shitty. Have to hope that things will get better for all of us.
pavlov- it is sooooo annoying when you lose a long post. I know some people auto copy when it gets long in case that happens but I hardly ever remember to do that. That sounds like a good plan pavlov has for you sublime- i think i missed your message about the gp but you dont deserve to get given the run around. so ironic that we have to fight most when we are in a state that makes it nigh impossible to.

getting late ladies, havent even taken my amy yet, hope you are all getting restful pain free sleep and talk more in the am

ps pavlov think you are right - it was good to be out friday and somewhere i knew, with family and they were giving me lots of tlc, cups of tea and distracting conversation. Plus although i thought it was hard on my dad to pick me up friday, he said he preferred it so that he didnt have to do anything saturday and could just relax, etc. ds is not ok but dh is giving him lots of tlc and tbh I would not help much- plus he is sometimes more teary when i am around, mum-stuff versus dad-stuff. He went to get changed out of a dirty nappy and when dh dropped it in the toilet ds said "p, o, o, poo"- this is great progress- no really! hope your little ones are happy and enjoying a slightly more happy mummy while you are having a few good days

Maizie, yes yes and yes. But no to having been sporty before. I do think that exercise would be therapeutic though (if I could do any), going on the exhilarating experience of throwing my pill box hard against the wall. Quite satisfying. Sound effects decent, too. Maybe I'll take up boxing.
I'm chatty too. Usually. Brain a fog. I know you've told me / is a million times which op you've had but I can't remember. You still in hospital or home? Sorry to make u repeat?
I suppose I tell most people I'm ok and v lucky cos I feel guilty as I am - physically and the guilt is cos most people who have the big C ... don't get off quite so easily. Gd forbid I'm ever in that situation. Then I REALLY would lose it. Seriously.
This is hard enough.
Most people I meet on a professional basis. Very lovely people and I adore my job. It keeps me going at the moment. But I save all my energy for it.
Taken my pills. Am confused as pain team said first to cut this, them that but if that doesn't work reintroduce this and ... as u know, my brain is a fuzz. But I'm doing ok. Well physically with that, too.
DH away tonight until Saturday in India. Not as bad as it sounds as I've a childminder who usually works while I teach and is doing pretty much everything. This is another guilt factor. Drugs make me sleepy and feeling down makes me - lazy. So I let her get on w it and stay in my room unless I'm working or someone visits. Not a terrible thing as need to rest. But did culminate in my loopy-loo moment.
It'll pass. But may seek out some counseling. Doc recommended one but it's not one I'm comfy with. They don't say anything. Not 'hello, pls sit down, how r U?' Awkward!!!
There's a cancer charity that offers some. Wasn't going to go but now I have changed my mind. It is traumatic. So many aspects. Even to know it was in my body - this thing we all associate with death.

Lol maizie I see you were feeling chatty last night! Hope you are ok this morning.
One thing I have noticed on this thread is that we all give very sensible advice about going steady and pacing yourself, but we all go crazy sometimes and overdo it, just wanting to be normal and get stuff done. It is so frustrating not to be able to do things, especially family activities and stuff like that. Also with a back problem sometimes you can push yourself to do things, but pay for it later. That sounds ok as I write it but really having to spend a day or longer in agony because you walked too far or lifted something heavy is not fair at all. But throwing your meds away is along that line as well of just wanting to get back to normal.
It doesn't help that a lot of backpain advice you read is always about exercising more, taking less drugs and continuing your normal activities. Its like this advice is aimed at people who go to bed with a sack of drugs at the slightest twinge. But from what I have seen most people with back problems are trying to get on with life, don't want to take drugs and often hurt themselves by overdoing it.

Oh yes goodness I would not like that weird counsellor who does not say anything, ok they can't say anything wrong that way! But just try another. I think its just like having a friend to moan to, the thing is it can be hard for friends to deal with lots of negative emotions and you don't want to upset them also not all friends are good listeners, still I don't think you need some weird psychological approach to listening. Just someone nice and understanding. I am quite lucky with my mum as we are very close and both love a good moan so I normally talk to her. She is actually a mental nurse and spends some time counselling people with MH problems but she doesn't mind listening to me as well, and she does cheer me up by saying I don't have a MH problem.

Talking of doing too much. I walked just a little bit too far yesterday. Went to a place called Stover, a wildlife area, beautiful. Walked in a loop and about half way around i was like 'ok, that's probably enough...!' but had to walk back to the car! It felt like a rubber band was being pulled tight from my back down my leg, like something was caught, and that is definitely sciatica and back related, rather than something else.

Tramadol and AI to ease the pain, which meant less pain but wide awake until 1:30am! And again at 5am when DS woke me up. Shattered now!

Just booked the yurt for our beautiful days weekend. We are going to make a week of it - go to the yurt on the monday, do some visits to local area, Dorset and around there, chill out by the fire on the Thursday, festival at the weekend! DH has agreed that US might not be a good idea in Summer, and also that his mother has not actually spoken to him at all about it, and probably has forgotten she had the conversation with me! he thinks we should presume it's not happening.

goodness yes,yes,yes to counselling. It's hard to define whether it's actually helping me but I like it. She's not silent! Having said that I do even bore myself by rambling on. I suspect you might also benefit from some later, too when your perspective has changed a bit. You sound as if you are retreating to your 'cave'(bedroom) at the moment which is quiet and therapeutic. Do you have friends coming over to take you out etc? My friends have probably quite literally saved my life and sanity. I know not everyone is so fortunate. They have kept me going and amazed me with their continued love and patience. I'm guessing you do cos you've talked before about your fb group. Can you take a big breath and post on there telling how it is? I'm sure they'd be there for you in a flash. Trouble is that when the crisis (ie the surgery itself) passes people can go back to their usual busy lives.

Anyway, sounds like your DH got a good fright and your parents know that you're fragile so hope they will help.

pavlov yurt is dreamy sounding. It will be like the old Timotei (?) advert. You might be too young to remember. All flowing locks and fresh linen frocks in a beautiful meadow! Yup, ditch the states.

maizie blimey you're a night owl. Give me the nod if you're up for coffee. Have time mostly unless off wasting it elsewhere! I, too was very fit. Swimming and Pilates. Luckily both things I can still do in some capacity. Sorry to be forgetful but did you have hip dysplasia? I did, too and was a very bendy child .

So, we're all agreed that pain and physical limitations are a total headfuck. We go round in circles, beat ourselves up, do too much, throw our toys out of the pram and pretend it's all ok. Not ideal so shall we all try to be just a little less bright and cheery when asked how we are? Say it as it is and give some poor soul a fright.

Finally, thanks to you all for asking. Reunion was lovely, lovely. 17 came and had a huge catch up. We mainly had kids quite young so they are all getting grown up. Nearly everyone had dogs...obviously a nursey/ nurturing thing. Couple of them have had horrible things happen, one in particular. Her DH had an ear infection which migrated into his brain and very nearly killed him. Three months in itu then massive rehab. Then, when recovering he was diagnosed with breast cancer and had to have a mastectomy and chemo. Shit, indeed. However, it was a happy, jolly occasion and my bag was much admired! After thirty years it was weird how little anyone had changed physically. Some, though were actually nicer, softer somehow. Like you get to a point when you've got nothing to prove. It was good.

I am, naturally a bit sorer than average but not too bad.

Have a nice day and be nice to yourselves. That's a bossy order .

had a lie in until 11.30! feel better for it
goodness don't ever worry about forgetting details- I have a weird memory that is massively crap for some things but have great retention for others- totally uo and down. I had an arthroscopy on my hip to "look see and tidy up" they found small tear in the labrum and tidied accordingly. It was due to a slight dysplasia so yes to matilda and isnt that similar for alot of us to have been vry sporty and have these issues. It might not be that exercise has caused damage- i have a pet theory that some people gravitate towards exercise and have a particular need for it because it is "keeping us together" both physically and mentally (either/or) and then when life events conspire and we cannot do it- problems of many types arise. This would help explain things like why some psychological symptoms seem to get associated too. It must be quite a complex relationship between all these physical and psychological issues ) i am thinking paticularly of fibro-fog because i have experirnced that getting aleviated by some exercise, both yoga and skating for me). clearly there is still much to be researched on all this. At least some people are taking the relationship between mind and body more seriously- and that it can go both ways.
sorry to hear you are suffering a bit for your fun days pavlov - hope you had a good sleep tonight to get back on track. I found the last few months tht a bad night with kids waking and getting up through the night was the most reiable predictor of bad back pain the next day. Everything feels worse when you are dead-tired.
goodness can you not do any exercise honey? what about water aerobics or tha chi? water aerobics really helped me through my 2nd pg. got to go now as family have returned from shopping- chat more later xx

Laughing at myself cos I fell for thinking I could read all the way from where I'd written and actually remember the things that popped up as I read. And so, I now remember...
NOTHING
Something about a tear in your hip and exercise-emotions. Got those. But know I had comments to write as I read other things and about other people.
Sorry.
Again
Oh but I did bear all (emotionally - no pics) to my friends on FB. It had gone VERY quiet and nobody was coming over much. So I broke the silence somewhat.
Here's a giggler for you all:
While in hospital, I was curious about The Scar. It extends from the top of my bottom all he way up to belly button height. Anyway, I couldn't move easily enough to take a photo with my iPhone. It was awkward. Can't remember what cock handed way I was trying to do it. Anyway, the results were 'interesting' and I managed to catch a few snaps of parts of my anatomy I certainly hadn't intended to!
My DH now tells me what a shock he had when, at work, he looked through his photos on his phone. Apparently, our photos stream into each other's. Pics of my noony came up!
He was shocked, but quite delighted all at the same time!
I, on the other hand, am horrified, terrified and begging him to delete them!

Big hugs to everyone.
Nighty night
Xxx

The thing is goodness sometimes people you usually communicate with on fb are busy, or forgetting to check posts etc- but it seems like they are dodging you when they r not- that's the prob with this kind of comm, it can make you assume stuff coz of lack of feedback. I have done it myself a few times and then when i have spoken or seen the person, found out a reason for radio silence.
well jel of your upcoming yurt-mini-break pavlov, it'll be wicked fun.
That is great that the reunion went well for you matilda - sorry referesh my awful memory- was it school linked or an fb group or something else- sorry if u have said recently.
watched "Bridesmaids" this evening- Kristen Wiig is hilarious in it, and it has Chris Dowd from the IT crowd- I loved that show, it stands up to repeat watching too like "Black Books". Any of you looking forward to Game of thrones starting again soon ( told you i am a film and tv nut, be so warned).
lol about your scar photos- but he does love and lust after you, that's not a bad thing as long as he takes car not to show them to all and sundry by accident.
Hope you have all had fun weekends and not too much pain today. My hip was great when i woke up- bit sore after each physio but i'm doing it ok, have strained my shoulder somehow (crutches?) Thought today was a good day for pain but i realise i am still taking a butt load of pain meds. I have felt my back and butt ache sneaking in more and more today- bit worried it is coming back because the anaesthetic is draining out of my system, tried to save some pills back and manage on less today in case that is the case. ( in the hosp they always think pain trajectory will only go down, down, down). probably wont make it in to uni on weds- maybe stupid to consider it but i hate missing lectures, sweet dreams all xx

ps I remember the timotei ad!