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!

How cute! It's so nice when children make big milestones. My oldest is potty training - with very limited success - but it still makes me so proud to see him wear big boy pants.

I am looking forward to the mri tomorrow, even though I know the results won't be for a while.

GoodnessKnows - sorry to hear about your tumour. Are you having treatment for this? I will look through this thread to read your story.

Thanks for your reassuring words. You sound like an amazingly strong woman x

Strong? No. I'm lazy and a complete scaredy cat. Lol
Tumour out. Was cancerous. They got it all out. I'm v lucky but it's all happened within the last 3 months. I'm an emotional, self-obsessed wreck. But getting support on here, just met with a counselor and have strengthened friendships (grabbed passing hands. Lol) and my relationship with my mum. I'm grateful for all of those things. Need to deal with the emotions and complete the healing process now it not take things too quickly - hard. My guilt thjng now is that I'm in a mess emotionally but think I ought to b (virtually)skipping with gratitude all the time as it could have been a whole lot worse.

Ladies who've been lucky enough to come off meds pleeeease tell me:
Does it make you feel sick as a fucking dog? I've quickly come off gaba, ami, oxycodone. Sicky headache AND stomach for days

Goodness knows - how old are your kids? They must be so proud of their mum.

And how long were you in pain before your diagnosis.? I am so pleased they got he tumour out, what an absolutely awful thing to happen. It's funny how relationships form and change when something like that happens. And as thinking you should be happy, that's just not normal. People want to hear that things are getting better and feel that you should be super positive about things, but it doesn't work like that. You have been, and are still going through a life changing experience

Xx

Terrible memory ever since diagnosis (approx 3 months ago) - sent me into a frenzy. Seriously can't remember more than one question / comment at a time so really with multiple mini comments. Lol

Pain before hand was over 2 years. I used to refer to it ask 'achey hip' --and have a go at DH as thought we needed a new mattress. Stupid me - HIS hip was fine
I now know it as chronic nerve pain.
DS 6 (and 'tricky' / Little Man Tate - eccentric).
DC 3
Both children were upset and a bit 'disturbed' by it all. So wonderful to be able to say I'm fine now even if I do feel like puking all the time and can't sit on a fucking chair/ sit up in bed (even more painful) I'll get there. You will too!!!!!

Goodness, poor you. You are really going through it. I hope you have lots of friends to help. X

Fiz I initially had very severe back pain and no leg pain at all though I did go on to have some leg pain and pins and needles. Every doctor asked about shooting pain in the leg and then said it wasn't a disc prolapse. It most definitely was.

I unfortunately had major problems after a micro discectomy and now have chronic sciatica as well as back pain.

I really feel your pain. Mine was like a gunshot wound. Now it feels like I've been hit with a cricket bat. I found people understand more if you can describe the pain in this way.

Can you cuddle your toddler and read stories together? Good luck with the potty training. That took some time in our house!

Goodness I would strongly suggest that you have somewhat rushed the weaning process. Are you off everything yet in too much pain to sit? Its a bit like the blue badge. ..

live don't tell your DD then that my DD is currently sat in front of a film nursing quite a deep gash to her knee, a scraped bum/thigh, cut to her chin and ripped trousers having just got back in from a super fast crash.

Seriously though, thank goodness she was wearing her helmet, make sure your DD always wears hers. It would have potentially been much worse as she landed on her head as well as the rest of her, but she should have been wearing her knee pads. I felt like such a bad mother - it was down a loooong hill, she had gone down it fast a few times with me at the top. A little girl said 'ooh she's good!' and then she promptly wobbled at top speed (had taken her feet off the peddles) and fell off in a spectacular roll that had a zillion mothers going . I was almost in tears as a stranger got to her before I did because I couldn't run to her (and looked at me in astonishment as it looked like I was not at all bothered as I was sort of nonchalantly strolling down the hill) She told the stranger she was fine, and that her mummy was coming, and as soon as I got to her ran into my arms and burst into tears! Then I had to walk with the bike and DSs scooter, and the helmets to the car which was miles away with blood dripping from her knee!

She is actually ok, milking it by having a film, getting ice cream for pudding etc I on the other hand am not so ok, having picked her up and cuddled her, dragging her bike a way to the car, then carrying her from the car to the door. I know, I know, I shouldn't have done that, but sod it, it was bad enough I couldn't carry her to the car, and that I could not run to her and be there straight away, that she had to stand there holding back her tears until I hobbled to her. So I am just gonna have to suck up the pain. But, ouch!

Sorry, that was very self indulgent

It is amazing when they ride their bikes for the first time though without help. Makes me realise how grown up they are!

And yes, yes, yes to good friends. Life savers and I love them all.

Goodness I'm in the process of thinking up some one liners for you to use at the school gate for the flakey 'friends' who weren't there for you.

Pav the exact same thing happened to us years ago. Horrid.

17 nope, it doesn't mean that! I am not that word and when I applied, I laughed when they gave it to me as I was like yeah! I don't know how that happened! But, we need to take all the help we can in our lives and be less 'get on with it' about things. Do It!

goodness did you read my horrendously long post about what can happen with quick withdrawal? yes, it can make you fucking sick! I was really unwell with 'amy 'withdrawal which I did without any GP advice (so I could drive the car to Eden project for halloween one time) and as it made me physically sick about 2-3 days after, for around 4-5 days, it also meant I inadvertently withdrew from tramadol too as I could not hold that down. I was taking 400mg of that at the time and GP had to give me anti-sickness meds (I didn't tell her that I had stopped the amy, as it didn't register that was why I was sick until I just wouldn't stop then I felt very silly!). How long has it been since you stopped it all? It will definitely explain the pain, and most likely the sickness too.

Um, about I kind of think we should be using it. Don't hate me, please? We are all smart,intelligent women with serious disabling injuries. We look completely fine. We need to educate the world that disability comes in many forms. Its not a word I relish applying to myself but hey there's plenty of issues I'm not happy with.

Matilda - thanks for your response. Cuddles are good but I can't have any pressure on my back because it causes it to spasm. But my husband lifts him up so I can get a kiss from him. I can get baby cuddles when lying down and that's the best medicine I can have.

I get numb hands every day but not in legs.

So sorry to hear about the complications with your surgery xx

matilda I know. You are right. I say I am disabled out loud and it feels wrong. Not that I don't like the word. But, that I feel like a fraud to say it. Even when I am shuffling along with a crutch. Even when I can't run to my DD who had a big tumble off her bike. Even now when I am reaching for the meds to cope with the pain of a simple day out with the children (including bike falls, that's just normal life isn't it?) But, actually. Yes, I am. It sticks in my throat though, like some kind of denial I suspect.

But. Actually, let me be honest. I don't like the word. Not at all. It means people form assumptions and judgments. Based on what someone who is disabled should look like, should act like, and they are often very negative. And as we know ourselves from our own experiences, the negative stereotypes are mostly very very wrong. That in itself won't stop me using it though as I am not one to shy away from the judgment of others. Occasionally I quite actually like a stereotype challenge! I just, as I said, feel like I am a fraud, that soon I am going to be fine. ha

Oh my Pavlov that sounds awful poor you and dd. Hope she is feeling better now.

I feel so down this evening

Pain yes. But that's normal. I feel so sad that I can't be there for my babies when they need me. ok, DD was fine, she has a cut and some scrapes, she is now intrigued about the little hole in her knee and is excited about showing it off at school tomorrow. But, what if it were more serious? I would not have got to her quickly enough. I feel like I was unable to protect her, keep her safe, take care of her. DH is right that I could not have stopped her from falling from her bike, but, I should have been right there at the bottom waiting for her. Or, able to run down to her, and not watch her at the bottom of a loooong hill waiting for me, not knowing how ok or not she was.

I should be able to have been there immediately and picked her off the floor and let her tears fall on me, crouch on the floor and inspect her injuries. Instead I just wondered down like I had all the time in the world, while crying inside that I could not get to her fast enough, as I could see her waiting for me. An when I got to her I could not properly look at her knee as I couldn't get to the floor easily. DH reminds me that she is aware of my disability and understands. But she shouldn't have to. She is 7! She should have seen mummy drop everything and run to her immediately. To know I would do anything for her. But I didn't. I couldn't.

These are the times when my inability to do much more than survive is glaring and it makes me so fucking mad, so sad. And I don't know what to do about it any more.I don't know what is wrong any more, or how I can fix it. Basically, I can't do more than simply take them to a park with swings or for a walk if I am on my own. It's so fucking ridiculous.

I don't want it like this for them. Fine, when I am in my 50's, let whatever is meant to be happen then. They won't need me to scoop them off the floor then (well perhaps they will ). But not now. I am only in my 30's.

Pav if it makes you feel any better, I went over the handle bars of my bike when I was 8 and my mum was about 100 ft behind me. A stranger got to me first because my mum just stood there in a state of shock for a few seconds and then couldn't run because of the heels on her boots!

I only remember this because she told me -I was much more interested in my broken teeth and the stitches in my knee and milking it for all I was worth

Your little one was not seriously injured and you can guilt trip yourself all you want with what ifs -but she's fine (apart from the scabs) and more importantly she knows you love her and care

wow that really was a smacker of a bike fall 17 Did you smash your front teeth completely? ouch. DD did a roll polly so I expect with no helmet there might have been smashed teeth and without the thick cord jeans (they were very lovely ones) her knee would be shredded as the cords have a huge hole in! She is like [wow!] now, and completely ok. I'll feel fine tomorrow, just got me down.

How you feeling now after your trip without your stick yesterday? feeling a little better?

I broke my 2 front teeth in half and chipped the 2 teeth either side -it was impressive

I had a really bad night last night and had to get up in the night for pain killers which I very rarely do

I have done precisely nothing today and its easing a bit now but I'm in a very funny position on the sofa -just can't get comfy

It turns out spending a day making bread leaves my hands quite hopeless for typing, eating bread on the other hand not a problem :-D

Pavlov that sounds so hard but please don't beat yourself up, sorry you are so sore ATM though.

Goodness, listen to Pavlov about reducing meds

I have made all the appropriate faces reading your posts. Orange is the new black has made me because of all the lovely recent handbagness!

you put it well goodness - normal is what you are used to, not what everyone does necessarily. I tried to approach feeding in the same way as i approached the labour- I tried to avoid the epidural but let others counsel me that it was ok when it was needed. As it was bf-ing went ok for both of mine but I had alot of back pain after both the births because of the spd so I had to judge if we could do it without it causing more extra aches and pains. I fed lying down a lot and my back pain improved a lot after a few months so just see how it goes and make the decision that is right for you and your family- everybody has their own unique situation and other people can only give advice, they wont know what is right for you. I loved feeding both of my kids and found the closeness a very positive thing to have but we moved my second onto a bottle at 8 months and I still felt that feeling giving her a bottle so it doesnt have to be one way to form close bonds and secure attachments. I did also get that physical feeling of being uplifted mood-wise at each feed, the oxytocin rush etc- helped me stay on the right track emotionally. My dh has a very close bond with both kids too and clearly he has never bf-ed either of them It should be the case that we are liberated by having more choices- not pressured or intimidated. There is always going to be someone who disagrees with how you choose to bring up your own kids but it is really not their business. I can really empathise with the worrying once you have knowledge because i was away recently for nearly a week when i had a hip op and i was worried that it would damage Robyn's attachment to me - emotions get involved and erode reasonable thinking. It was fine of course and she just switched onto my dh.

matilda is very kind but I am just a beginner to the world of psychology. I started a foundation integrated Bsc last September. It is 4 yrs. I would like to do a phd after that (havent quite got my head around whether u also have to do a ma or not) and become fully qualified psychologist but i am interested in several areas so I dont know yet what i want to work as. Lots of options appeal.

I did a bit too much today- had gone up to town for a try-out for something and on the way home I had to walk to the next station as that one was closed, then took the wrong line, then went wrong direction and had to double-back. The lesson of this story is don't take morphine and ride the underground! I also found I got alot of looks for having the crutches and though most people were kind and helpful I still felt alot more self-conscious than i thought i would and coming home the crowds were a bit terrifying. I only had the crutches to give a bit extra support while healing but for someone who relies on them to stand the tube must be very scary. Feeling back to normal now- just, I will try not to overdo it again, got a bit stranded on the sofa for a few hours this evening.
sorry- massive post as ever, i am a terrible chatterbox, u may be all used to it by now sweet dreams and long sleeps to everyone, dear goodness hope you have a better night.

Matilda, yes. Off all but frequent n maximum doses of ibroprofen extra strong n paracetamol
Not in pain at night - wonderfully. First time in YEARS
But can't sit.
Not for longer than 20 mins without feeling like there's an old people's bowling ball behind me.
Watching Ruby Wax while sitting sideways on a bowling ball was 'funny'.
F, I'm ok. I do have friends. I didn't know that I had them before. Ironically they've turned out to be the lovely acquaintances. Sadly, the close friends have not been there for me as I thought / would've expected them to have been. Neither have the school mums. At all! I definitely mistook friendly for friends, there!
Wonderful ones have been the friendly acquaintances I expected nothing from (parents of some tutees,
Slimming World girls, etc.).