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!

Maizie, do u have a friend who could record the lecture for u? iPhone or dictaphone. It might make u feel a bit more connected or less worried about it. Quality won't b perfect but better than missing completely?
Hope your pain isn't ramping up and won't last u long

That is a good idea about recording the lecture, you will stay in touch that way but not have to travel.

Hello! Back from a few days of navel gazing and feeling sorry for myself it's been a year since Bil's accident and everything in our whole lives changed let alone for him, he was sporty and funny and had the best gang of friends in the world and it's just not fair that he is in a hospital bed for the foreseeable future.

Anyhooo, new week, new start. Lovely and sunny for the dog walk (well take dogs to beach, watch dogs run!) this morning and ooh what's this, a parcel from John Lewis containing some Benefit make up? I wonder how that could have happened...

goodness loving the scar porn pics story! I also forget everything, even what I'm talking about mid sentence. It's very annoying. I live by the list. I also find things around the house that I started then forgot about. Not good. Hope you got some response from your fb friends? Keep offloading here. I think it helps..

Have a good day, everyone.

lost, re your bil. That's awful.

re benefit makeup. Naughty!

Hi Losty sorry you've been down. in case you missed the daff i posted for you on St Davids day here's some more

Lost, Johnny Lou Lou sent you a (Benefit) present? They must've known you were quite understandably feeling sad and angry at the awful situation your BIL is in.

M, glad you like that funny-nunny story.
I can't remember what else u said but know it reassuringly normalised my nuttiness!

Talking of nuttiness, I called a community counseling centre this morning, broke down into tears to the receptionist and was offered a slot at 12pm. I've got weekly slots from now on. Isn't that great! DO, DEFINITELY feel better. Kind of wish I'd gone along with the advice of contacting them before now. Will raise money for that charity at some point, too.

Can't let them 'get me' toooo normal, though. Need a bit of spark

He's good like that our Jonny I took a new profile pic for FB and everyone was going 'you look amazing' 'you look so young' it's worth it's weight in gold that stuff. And very good for your mental health, should be on prescription really .

Goodness that's brilliant about the counseling I pay someone and see her every week and it's amazing. Even if I just sit there and list my weeks grievances I feel loads better plus when you are having a bad moment you can think, it's ok I'm going to the talking thing in a few days I'll save it for there. Being normal would be boring

I saw the daff livelab, thank you, have they gone again already? I didn't get to use them [daff] [Wales][St David]

Nope they are gone. I love daffs IRL so springlike. Must get some for the house.
goodness glad the counselling went well.

Good old Johny Lou, he sent me my new handbag last week. Such generosity.

Counselling. Yay. good things can happen. Funny how your views change. Who knew you'd be celebrating about a counselling session.

I've overdone it, what's new? Have loads to do tomorrow. Have written list and not much I can cross off. Hoping to meet maizie though so that's good. Hope I don't forget .

Spoke to my parents today and dad said 'can you let us know about September soon?' I'd completely forgotten they invited us on holiday. Now that's a big forget. Totally no recollection at all. Even goodness hasn't forgotten a whole holiday.

Hahaha on a number of things - most of which I've forgotten in the space of reading that one comment.
I must try to get on the right side of Johnny Lou Lou again!
Here's a brain fog I've had in the past (pregnancy): put my knickers in the washing machine, only to close the fridge door with the realisation that I'd got the wrong machine. Lol
Glad I realised before anyone needed anything from the top shelf.

I'm feeling better. I've psyched the children up for pancakes in the morning. Must be mad. No getting out if it now. Then their school run lift (for now as aspie is being 'interesting') us coming for an English lesson, someone's calling for tutoring tips, quick shower and a friend is coming to get me out for an hour.
Big morning for me.

How exciting to met in RL M&M! Fantastic.

okay gals, you are gonna have to fill me in on the Johnny lou lou thing coz i'm lost- i barely managed to get the pain transfer device gag
had a quick jaunt out with crutches today for a coffee with my dad and it felt good to get a change of scenery and some air. Looking forward to meeting up with matilda tomorrow- i'm sure you wont forget matilda .Good to start having short bits of activity but taking it slow too. Thinking about going home wednesday maybe coz I am missing my sproglets so bad Ds is all better though
goodness that is a great idea but I think I have just come to terms with missing a bit, it is not a great deal and i can do my own reading- the lecture is always just a starting point anyway. it's cool, i have ti stress about stuff sometimes to get through to the other side iykwim?
lost that is shitballs for your bil, bet he was happy to have you visit though. it is unfair when crap happens to good people, so unfair.
wow that was quick to get a slot goodness hope it helps to talk to someone regularly. I have thought about counselling recently when this stuff has been getting me down but I have a few friends/family to talk to usually that helps ok. No danger of being normal here- I've always had people say i'm a bit weird/crazy, used to it by now.
haha to the brainfog story goodness - best one i've done is either trying to "dial out with 9" from my OWN phone, or trying to enter numbers into a computer by punching them into a CALCULATOR sitting next to the computer!! both explained by overwork! maiziebrain, maiziemonkey that's me
oh and once i tried to open my door with my travel card ! but i had been fasting for a resting glucose test so i had an excuse. getting to the end of my hospital -given meds- what will they do if i am still in pain when they run out? have had back pain ramping up a bit today ( but weirdly very little hip pain- it is still transferring?) I think i'll ring the ward tomorrow am as she said to if i had problems at all.
hope you all get good night's comfortable and well-rested sleep, x
oh lastly, had lovely chocolate and chickpea cake made by my sister, no wheat/gluten, it was scrummy- had it with caramel ice-cream and respberries yum

totally diff subject but what you all think of these super-light down jackets in uniqlo?

Maizie. - Jonny Lou Lou is john Lewis
I get the coming to terms with it stuff
R u worried about pain increasing without increasing drugs? I found once pain was under control in hospital (my own hip pain was nerve pain so needed non morphene drugs: gaba, ami, oxies). Now I'm able to cut them down gradually (or throw them at walls rapidly). Sounds like you are worried pain will INcrease vs decrease as time goes on.
Anyone else can help or advise her?
I'm doing my best here but don't think I'm being v helpful

So excited about M&M day. And Choc n chick pea cake sounds fab
Lovely
Tummy-safe, too

maizie I think they expect you to see your gp for more meds, can you arrange something at your parents? I'm sure if you show your discharge paperwork (though usually illegible) they might help?

M&M meet up sounds brilliant, I am jealous

Goodness I proper cackled at pants in the fridge, not that I've ever done anything like that

I don't know if Bil is happy to see us. I'm sure he knows who we are and he squeezes the boys hands which they love but he normally has such a frowny face on when we are there. So hard to know how much of him there is inside there. I feel so bloody guilty when I should be there for DH and his family but instead I do the best I can but am a drain on DH as well as everything else, I feel I can't complain about stuff because everything is so negative anyway but I can't help it! I don't think I've cried as much in my entire life as I have the last 12 months and that is so bad for my skin!

lost how horrible for you all. I wonder if the frowny face is due to muscular contraction as opposed to feeling cross? Though it sounds like he'd have plenty to be cross about if he was aware.

I guess the only possible conclusion is that shit really, really happens so we should live our lives well and make the most of each day. ( starts to sing and clap on tambourine )

I've just been to see a nice physio/ Pilates lady with a view to joining her Pilates rehab class. I'll keep my one to one sessions but I miss the class aspect. She has agreed to let me join and I will rest during certain exercises that might not be good for me. I'm getting to be a busy girl .

Before Back Gate, I was a super busy girl, always rushing to the next thing and I miss having structure to my day.

I'm very excited about my RL meet up today. That's two lovely ladies I've met. Another thing to add to my Look On The Bright Side list. I'm happy to share my extensive experiences of pain and analgesia. Lucky old maizie!!

That's great Matilda tell us all about it. I hope you find a coffee place with comfy chairs!

Lost, big hugs. Crying is good for your skin. Not bad. You'll end up with tension headaches n wrinkles otherwise. Maybe. Benefit is fab but If you're ever go to covent garden, visit Charles Fox. I'm a big fan of concealer and lip stain. It's a make up place for actresses n make up artists. Anyone can go in. The stuff I buy is cheap but incredible! DERMA COLOUR camouflage creme.

My latest purchase is a fabulously practical aaaaargh (wait for it...)

new pill box holder.
Still waiting for the day they'll sell 6 dose a day ones. It's good. Really good
For a fucking pill box.
Lol

Friend came over for half an hour. Pulled the plug on taking me out. I expressed the level of my depression when she have me the 'talk yourself out of it' angle. I'm ducked off. I'm hormonal and STUCK IN.
Thank gd (her) she took me out. Just sitting in a cafe amongst a bunch of grannies and drinking herbal tea. I was happy!!!!!

Came home and paid up for children to do Easter camps gulp and our local amusement type farm annual membership. Now I'm exhauuuuusted. Pooped.

We have a Physio with Pilates post op classes in radlett. Is it the same as yours?

The Pilates is run by a Pure Sport clinic which is attached to our David Lloyd and is called rehab Pilates so hopefully ideal for me though an hour will be too long so I'll be sitting bits out.

I have had the loveliest afternoon chatting with the lovely maizie. She's doing fantastically well and most definitely doesn't look like a few days post op. And the hair which was much discussed last week is fab. Well, I don't think we drew breath, there were so many similarities it was uncanny. And we both understand pain. Unfortunately. So, meeting in RL is good for anyone considering it.

goodness glad you put your friend straight about the need to get out. Staying in is not good for the soul. Your pill box sounds a crap thing to have to buy gorgeous. . What colour did you go for? A seasonal pastel, perhaps.

Hope everyone is on a low pain level. I'm lying on my bed with dog, hottie, iPad and drugs. Glamorous me.

How was the M&M experience? So lovely!

I have ONE more week until I can burn my hospital surgery stockings and get in my car to drive!!! Woo hoo!

I would give my right arm for a glamorous looking pill box, we should go into business, we can't be the only younger women who love orange handbags who are also held together by good drugz . So glad you got out, makes such a huge difference.

I've met a few awesome people through MN Matlida, sometimes it feels a bit like online dating but for friends. IYSWIM. I have an amazing gang of women who I meet up with regularly in RL who I 'met' on here. They've kept me going this year. MN is amazing because I, fortunately I suppose, wouldn't come across people who understand what it is like to be young(ish!) and in constant pain. I am sick of people who just expect me to get better and almost act as though I'm not trying.

Well I did a daft thing and did far too much today, sometimes I think I must just be a lazy cow but no, I did, ooh, about 20 minutes of moving more than normal and carrying stuff and I was FUCKED by tea time. I could have cried making the pancakes. So, lesson learned!

Pilates sounds fab, got to be good for you if done properly.

losty oh have a huge one of these that is so shit for your BIL. Really, really shit. and your family But, please don't think that means you have no right to complain about pain. It's still really fucking shit for you too you know. Just a different type and level of shit, but, well. I know what I am trying to say just can't say it well. Yes we do have to put things into perspective and say 'well, we are lucky, we have lots of positives to look forward to' etc, but that does not mean it's easy and ok for you it's unfair for you to never be able to feel upset and in pain. I mean, how can you marry that up, your pain versus his? your experiences versus his? You can't as he would win hands down, but it's not a competition. And if it is, there are a fuck of a lot of people ahead of you, and many more people behind you in the pain stakes. Oh I don't even know how to say it. You don't have to pretend here. That's the nutshell of it. Definitely use this place as the place to come and say how your day is shit, or your pain is high, as we know that is not you not being ungrateful for your 'lot'.

I have not absorbed much more, have read, nodded, but am tired and in pain this evening. Sorry ladies. I sometimes use a notebook you know. Should I not say that? Should pretend I have a fab memory?

Oh but maizie enjoy coffee with matilda, she is lovely. Proper social butterfly that she is!

I have had a good few days of pain, and done too much probably. I have however not been good with taking my meds. it has been 1) fabulous as I have been slightly less brain fogged AND in not too much pain. I have almost felt 'normal', (although apparently I still walk like an old woman, seems to be my default walk these days). I have been able to sit a little more at work, and thought 'oh typical just as they get me a new desk (arrives next week, moves up and down electronically!) I am now better' Ha! Why did I think that?! so, my 1) is that I have enjoyed work, really actually felt productive, getting back on track, not just staring at my screen trying to figure out what I was doing, I actually felt like my old self, good at my job. YEY! so 2) today, huge relapse. Pain through my back, sharp, sore, flu pain, through my pack, into my disc, down my legs. I couldn't bend to pick up money I dropped in the library after school run, I had to do some weird sort of bending shit, straight leg forward, other leg bent, looked like a right fucking sight. I tried to 'walk normally' but DH and three colleagues said my pain levels had increased in how I was walking, how I was moving, how I was behaving, in my face. I try hard to hide it but it's so fucking obvious.

I was going to write more about how I feel. But it's too long and boring. So I shall sum it up. I feel fucking fed up.

matilda and maizie sorry just x-posted! so glad you had a fabulous catchup!!

goodness we should have a Stocking Burning Party