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!

It will only be 3m. There is no way on this earth I would jump off the 10m! nor the 5m… 3m is only 2m above 1m…

I can do words. I don't really do humour. So it won't be funny. It will be fucking rude. Or at the very least sarcastic. I can do sarcasm ok, but it's hit and miss whether it's funny.

Oh I like sarcasm and fucking rude

losty I love that technique for reading. I might have to try that with DS, as he loves us reading to him, but he has no interest in learning letters, at all^. I know, he is only 4. But, he is a whizz on the computer! A good bribe I think

the Biff (?) books are good. Oh what are they called? goodness you will know that? the ones about the two children who go on magic adventures, designed for helping children who are learning to read, DD read those last year when in yr2. Some of those books have guides for the teachers in the back, which I quite enjoyed reading and doing some of the exercises with DD - questions about the story, key words to focus on and ask about etc. I have no idea if it helped her at all, i suspect not, it was more about doing, doing, doing, then one day it was like a switch. She just got it over one summer. Went from learning to read, to reading.

when I was pregnant with DS, I had hyperemisis and was on a support thread here, we designed a t-shirt with something along the lines of 'if you mention ginger I will fucking hit you'. It hit the tone quite well I thought.

Oh yes the desire to snarl 'no fucking ginger biscuits will NOT do the trick' . I could apply similar to my dad and his belief that if only I used voltarol gel properly my back would be fine.

We have the same books here but they are called Onw (on-oow) and similar. I hate them starting to read but it is like magic when they suddenly get it and can just read. I am so happy that I have done the three of them now and don't have to go through that again!

haha, yes had same experience with the f-ing ginger brigade - you know what they do with that to horses, don't you? would make them run in the other direction ( i never had HG, just nausea- that is hardcore).
it's late, i will post more tomorrow, had a shitty day today, tell ya gals about it in the am, will go to sleep trying to think of D inspirational posters.

on the tube yeaterday had to do the "looking all around the carriage slowly as none of the ignorant twits have got up yet, slowly..ah thank you sir" rigmarole. In one shop a couple of guys actually sniggered at me and said oh look there's someone on crutches. Were they 4? makes me really respect those that have to do it all the time.

Shocked
Someone on my FB group (RL friends I've kept posted about my progress) has just upset me.
I put up about having been differing nausea and headaches and finding out it's been cos I came off drugs too quickly at advice of pain team who I didn't quite understand how many days to leave between cut downs / maybe it's just my body / mind not adapting in synch. My memory isn't good. I hadn't realised and they weren't around on the phone at the weekend when my symptoms started to get bad.

Anyway, a friend said I was being 'irresponsible and harmful'. WTAF!!!!
So I responded with:
'I took the direction of the Pain Team. I'm not controlling my own pain reduction. I'm following the bloody instructions! They just omitted to tell me how to pace it (a day or a week between reductions). Please don't accuse me of being irresponsible or harmful. Pretty harsh and accusative. Not at all appropriate accusations of someone dumped out of hospital and back home with too little good, clear guidance.

Fucking hell, man! Some people have clear issues.

Matilda
Thank you for the school gate response line. Will they not then ask 'what was / is actually wrong?' Followed by a swift 'I had no idea!' Saw a school mum who never even smiles glide past and stupid me did my usual 'recognise a face, smile n say hello in friendly tone' idiot move. Only to be met with a flat line grimace. What the actual fuck?!
I'm so sick of these rude bitches and wish I wasn't so ... friendly. It's a killer.
They really don't give a fuck. I am tempted to send a class email outlining the above

Not in so much pain. Bit withdrawal sickness n headaches were pretty bad. Cramp-like squeeze feelings in arms n legs too that made me feel sick. Sadly (as means have to take OxyNorm) pain team were right, I do have to take one a day again (no biggie but I've huge aversion n fear of taking this addictive shit and also want to put it all behind me. Shitty fucking nightmare). Don't know what id do without you girls to support me. Hope I give back at least some of what you all give in support and 'camaraderie'.
Friends moaning about colds, chicken pox and wanting to move to the midlands are currently getting right on my tits... and the real possibilities of health dangers in life seems so much more real and scary.
Good thing I'm going back to that counselor next week. Lol
Off to read second comment now (only read first since my last dumping and seems like you're all on a mission to get to 1000)!

Lost, if you want to play golf into your 80s, you CAN.
AND when you go to your golf club, you'll have to drag your golf clubs less distance as you'll have VIP parking!
Blue Badge is cool. Don't use it on 'good days' if you don't feel comfy. But the way I see it, it makes my life and my family's easier to counteract the shit. Why not!!!! Remember, disabled badge holders and consultants park together. VIPs

Lost, get into a golf buggy vs waking to first green anyway. Or, like me, be lazy n do something easier

Lost, I am laughing out loud with the vision of your blue badge t shirt in my mind. Hilaaaaaruous

I suppose I'm trying to think of mine as a temporary medical/ pain (blue badge).
It would indeed be different (far, far harder) to process if I thought it was permanent. she says refusing to acknowledge Malt's question about what pain I'll be left with, the chronic disk erosion and bone erosion found and featured on my MRIs. Fill me with dread and alarm.
So, Lost, I really hope I've not upset you with my jovial and minimalising take on the BB. It's all I've been able to handle in processing it for myself. Kind of a 'get what I can / there must be some benefits to this shit.'

But seriously, does having a BB mean we are registered as disabled now mixed feelings arising... and wondering whether I'm entitled to same cinema benefits as my dad lol-ish

WTAF with the consultants: told me hip pain was not related to tumour n would have to deal with that down the like once healed from op.
It's ... negligible already (on my own Scale of Hip Pain). I must add that considerable research was carried out (by me) to ascertain pain readings over years - well, at least two. Possibly up to 6. Lol-ish

Shit, girls. Pleeeeeease tell me I'll sleep beyond 4am again.
My sleep has been fucked for so long but had thought it was cos of pain, pregnancy related n worry/pain. Now... WTAF (can you tell I've been watching Ja'mie Private School Girl on iplayer?).

Pavlov... aaaargh to DD taking another fall AND to thought of jumping off board together.
You're a lovely mummy. If not slightly self-sacrificial. Lol

I felt bad yesterday. Took my DD to farm but left her there with childminder. I could've should've give round with her but had arranged to sit in a cafe with a friend. DD had lovely time but I feel bad at not being able to go round farm. Will try to make up for it over Easter as DS in camp and a few weeks off.

Questions for the experts (you more experienced lot):

Could it be OxyNorm keeping me awake this morning (took it at 3pm yesterday and woke at 4am so doubtful but need hope that won't be waking eternally at 4am).

Does having a Blue Badge qualify me as / mean I'm labelled 'disabled'?
I feel a total fraud if it does as I'm entitled to park more closely to stuff cos, I've interpreted it as it's easier at the moment'. That's all in my mind.

Lost, I'm a serial Briber Mumma. So I love your reading before computer thang. Can relate.

Does OxyNorm make me hungry?
Wanting second meal and it's only 6.35AM

Fizzlebiscuit: I'm soooooo sad to hear you've been in such pain and r having such a stressful time. How did you sleep? How are u now? Must've been just awful having that MRI!
Biiiiiiiig hugs

Maizie, grrrrr to the '4 year olds'. Fuck Witts

Oxford Reading Tree are the stupid Chip, Biff n whatever books. Have a peek at this:
Read with Biff, Chip & Kipper: Library by Gazoob appsto.re/gb/YopxH.i

I agree with the daily reading thing. Doesn't matter what it is - as long as it's a phonics / beginners' reading scheme or a reading programme. Libraries stock good First Readers. So important, the daily practice thing and necessary to have an adult to support (positively).

I've got another job interview today and I'm feeling -dare I say it......ok ish this morning so don't have to take the zombie meds

Pav if you go off that diving board you are a much braver woman than me!

Ooooh 17, sooooo excited for you!

Reading ideas:
Rent audio stories for your lucky little niece. Library (children's section) will have a lovely range, I'm sure. Don't make my (DH's) mistake and take then out on your adult card - more costly fines). Use a child's card and get them back/ renew in time.
This will provide the story structure, enjoyment and vocabulary she'd receive through reading/ being read to on a daily basis at home. Ish

Obviously, the above will do nothing for her reading fluency. I'd suggest, IF her parents can't be persuaded to read with her at least on alternate days, that you give her a reading programme (as well as night time audio story CDs - some are called Talking Books and come with 'matching books'. CDs are unabridged) such as the Word Wasp Literacy Primer or good veryold Toe by Toe. Introduce an 'incentive scheme' such as getting M&D to listen to her read one to threes columns of sounds (5 mins max.) and you'll listen to her at next week's Aunty Visit. If she has scored three ticks in a row, including one from you on all items, she'll earn points towards a ... did I mention I'm a briber? lol

Look at this on eBay:

Pick n Mix Teacher Reward Stickers Stars, Smiley etc & Free Pocket Reward Chart

bit.ly/13z9k2C

The Hornet Literacy Primer by Harry Cowling www.amazon.co.uk/dp/0953871428/ref=cm_sw_r_udp_awd_4kShtb00171HG

Or

Toe by Toe: A Highly Structured Multi-sensory Reading Manual for Teachers and Parents... www.amazon.co.uk/dp/0952256401/ref=cm_sw_r_udp_awd_JlShtb1NJVE2K

I don't suggest doing one without the other (i.e. Children's audio books without reading programme, or vice versa). Obviously, I'm only digesting these as easier for parents to 'take on' than keeping up the practice of reading with a child every day if it's really not something that they'll be able to continue with.

Pleeeease ignore reading suggestions if I've misinterpreted your post. I thought you were asking how to help her. Memory of ... can't remember what. Lol

goodness sorry for the insensitive question about residual pain? How the hell would you know or want to consider it? Hope the sleep gets sorted, long term tiredness is a killer. Do you sleep early? Actually seems like you lot don't really do sleeping, so much chat after I'm in bed! I'm neither a night owl nor an early bird. I peak between about 11-3!

For the school bitches mums:
(After the fragile comment)

They: so what is actually wrong?
You : well, sarcoma( very puzzled voice)...I've known that quite a few weeks. I forgot you haven't been in touch so didn't know that. Sorry, can't stop now I've got yet another appointment.

You then go to get your nails done, have a massage or meet someone who does give a fuck. I guess just how rude you go depends on if you want to retain the 'friendly' bit in time. I think I'd be calm, rather distant and very busy for quite a while until the flowers and offers of help arrive .

The reading thing is ok, I've bought some books from amazon which have been used for KS1 testing. The Snow Lamb we read yesterday. It's got beautiful illustrations. We really discussed it all along to check her comprehension. Little bro, 4 wanted to join in too! But...parents both work full time, get in after six, have to cook etc. they do get read to every day but not reading practice. My little bro, their dad is very stubborn so me pointing out the bleeding obvious isn't necessarily acted on. SIL isn't English and though she speaks very well the reading bit isn't her forte either. The kids loved reading with me...

I'm attempting rehab Pilates today. First class in over two years so a bit excited. Hope I manage. The physio/teacher is nice and assessed me and the class will be small.

Have a good day!

Oh, can't remember who asked but there's no such thing any more as Registered Disabled? I guess having a BB and or D benefits amount to the same thing? Actually, having the BB has made certain sections of my family etc sit up and listen a bit more and hopefully added clout to my many applications.

Cross posted! Thanks, I'll take a look. Stickers good. I also got a beautiful book bag and notebook for writing in like a reading diary. Actually, I've spent quite a lot...

I just need to persuade them to incorporate a bit of practice with the nightly stories. They have heaps of books and CDs etc just been lazy about practice. Think I might have to back down and see how it goes. I'm enjoying a little challenge. I used to love going in to be Mummy Helper.

Matilda, you weren't at all insensitive.
Hadn't even registered on my Offended Radar. It's fully consumed with accusations of being irresponsible and putting my children in danger (WTAF) by reducing meds in the order instructed by the pain team. Actually DO want to tell her to fuck right off.

Loooooooove the retort suggested to 'What's actually wrong?' Do I want them to go and google 'sarcoma' over coffee at their exclusive bitch-fest coffees?
I am on the Did You Hear list. Not the Give a Fuck list.

Has anyone else differed from a horrendous degeneration in language as well as memory since diagnosis/ pain? I honestly didn't used to swear! Rarely and not this often or strongly.

And where IS that plane?

F. Biscuit (have forgotten first part of your name), how are u this morning? Really hope you're ok.

Hahaha
Before my op I made my DH go on a dry slope lesson with me. (Had an inkling urge to do I'd not be able to do things like that post surgery.

Mat., you're such a cool Aunty. Sounds like you couldn't possibly do any more than you are already. I'm sure that your niece will really benefit from all that you do to support her. Also sounds like her parents couldn't be expected to do much more, either.