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!

Matilda, I have a job as a teacher covering those on courses, etc. I don't want to be drugged up while driving (quite far, for me- 30-45mins by car) and a looooong day. I'm doing this on Wednesday and it's a job I rarely get to do and am so keen to be well for. That has also spurred me on to reduce the meds.
Won't be driving there or back though. If I made it there, I know that I'd not be for to drive home. Long day. Full on. Then I'll have two tutees waiting (who I really ought to cancel but don't want to as I've missed so much work as it is).
Nutter!
Will call Pain Team today though. Thank gd for them!

Oh Pavlov. Oh poor you AND your DD

Hope her knee is getting better and thank gd you'd put a helmet on her. Can well imagine how u must've felt (appearing to be sauntering, nonchalantly to your DD's aid). Sometimes I with I could wear my ie badge on my forehead. People look at me and say in shock with the expression of 'you've duped me / disappointment "You look great. I thought you'd be laying down/ unable to move!" Last night, a lovely friend told me "You've never looked better!" And she meant it. And I DO look well. It is astonishing. But I don't yet feel it (as you know I've moaned only too well. Lol).

Jeez Pavlov. Idiot I am! No. Hadn't read prob had read and ... FORGoTtEN in unusual post-diagnosis style your withdrawal thread warning. Shit. Wish I had. But don't feel sick yet today!

goodness I really admire your determination. I hope Wednesday goes well. I don't know if you've been using heat patches but that might really help you to get through the day ( though they can make one feel a bit hot).

Thursday might not be your best day ever so can you factor in some serious rest?

Calling the pain team sounds a good idea. Did the surgeons imply that you should be completely pain free eventually? Or will the bone and disc erosion mean you will be left with residual pain? I carry a cushion in a canvas bag a lot of the time. It helps a bit with sitting but other than that I avoid sitting nearly all the time or fidget around annoyingly .

Now, first one liner for the school gate mob:

They: 'Oh Goodness, how are you?!'

You: 'Well I'm still rather fragile, of course but the pain is improving. Thanks so much for asking'.

Don't just say 'fine'. They should be so ashamed of themselves.

pavlov you are right about the age issue. I've thanked my lucky stars a million times that I don't have young kids anymore. Having said that I will < whispers very quietly > be 50 next year and having this problem still isn't great or idea. We were hoping to be travelling, working and enjoying life. Not so much just now.. But I do get your point. It's crap for you and all who have small or even not so small dc.

Still, the sun is shining and that makes up for a lot. Have a good day everyone.

Oh, and don't forget I'm seeing my MP next week to rant about ATOS. Anyone got any comments or experiences to add?

I have no idea what to say but can you surreptitiously take a couple of photo's, he's quite lovely looking .

I have applied for a blue badge today it's a bit disheartening writing down how little you can do. My grandpa used to to 18 holes of golf well into his 80's and I couldn't walk to the first green! Shocker .

Has everyone had a lovely monday?

Having a day from hell.

I have developed a cough which causes my back to spasm every time I cough, even with all the diazapam I'm on. I couldn't move this morning and my Mum and Dad nearly called the ambulance. But after two hours, they got me up and I made it to my mri. It was impossible lying gown and not coughing, it was awful.

I'm now completely stuck on the sofa and my cough is now affecting my asthma. I know where this is heading - I usually end up in hospital when I get a cough as my asthma is so bad.

I just want an epidural to stop the spasm pain whilst I cough.

:(

It's not really done on mn but...

((((((((( Fizzlebiscuit1 )))))))))))

Do hope you improve. Maybe going to hospital is actually the right thing to do. At least someone would look at the MRI and try some better analgesia. Glad you have help. Not much to say in terms of advice but sending some warm vibes your way.

lost the blue badge certainly is bitter sweet. I didn't use mine at first, I just couldn't face it. It is such a ghastly confirmation of the D word.

It is useful, though.

fizzle it certainly sounds like you should be seen,I hope you are feeling better soon. Well done on getting to the mri,I can imagine how hard it was to keep still. for lost, the blue badge is just a tool,a way to keep living.

matilda firstly NO WAY! you look much younger. And secondly, i plucked that figure out of the air as some medical dude at the spinal pathway clinic told me that by the time I am 50 I will probably be pain free. And I was like, I would prefer to swap and have this then than now, as the children won't need me physically then. I apologise if it sounded that I meant it's ok to be in pain and disabled when you get to a certain age. losty good for you applying for the blue badge, it's a tough thing to do, as you said reminds you of what you can't do. My MIL is now 80, and she is definitely fitter than me. I think I said before that she climbed mount kilimanjaro when she was like 74/75, she just took off from US to Tanzania and sorted it all out when she got there, on her own! She has only just stopped doing aerobics in the last year or so after getting new hips as she was told to go carefully on them

I had a discussion with DH about the use of the word 'disabled' today following from our mini convo here. I was saying to him something like 'i guess I should feel more comfy about it, seeing as DLA see it as a disability, I have a blue badge, it's recognised as a disability at work under the equality act…' and he said 'and….seeing you are disabled…' His view is that we should not shy away from it. We are, as all disabled people are, normal people with medical conditions that impair some aspects of our lives. He said it is the government have claimed the word as theirs now to do as they please with, and they are using it for negative reasons and we should stick our fingers up to the government and say we fuck you! we are disabled, we exist as part of this world, so fuck off we shall use it without you encouraging the daily mail to make it out to be bad! (my time on MN rubs off on him whether he admits it or not )

fizzle I would go to A&E, the very least they will do is make you more comfortable than you are now. Score your pain on 1-10 and if over 7, go (and don't minimise). I remember being told (I ignored the advice, wish I hadn't) that if I cannot manage the pain at home on the painkillers I have been given by by own GP/OOH then that in itself is an emergency.

You can take baby in with you if you want to/need to/feel it's appropriate, well, I say that with some certainty, but am not entirely sure that's correct, but know that a friend of mine was admitted as emergency and they helped her keep her baby with her.

pavlov, thanks for the compliment! I wasn't annoyed by your comment, it's true that having disability with young dc is terribly difficult. It's just that whilst I'm glad beyond glad I don't have that to cope with, it's still crap .

In respect of the government 'claiming' words and making them feel unworthy or ashamed, what about 'benefit claimant'. Now that's really tinged with shame.

fiz agree with pav. A&E if you can't move or breathe. Call ambulance because you will avoid being left in the waiting room for hours and it is an emergency. Cry. Cry a lot. xxxxx

maizie, wow! Crutches on the underground, you are brave!

You lot really are amazing. The other face of disability? We do as much as we can in really difficult circumstances and just once in a while some tangible government support would be quite nice.

Sorry, ranting again .

fizzle you poor poor thing, I can't imagine how crap you must be feeling, did you at least get the MRI done? Can you get your emergency lovely GP out again. I know going into hospital seems like a good idea but being at home at least means you can roll around and get as comfy as you can, I hate GP waiting rooms, let alone A&E! This WILL get better you know. YY to call an ambulance if you need to, look after your chest.

Pavlov I've been thinking about the whole D word label too, I decided that as I am technically disabled because I am 'hearing impaired' I don't mind if I get in on a double . If I get the blue badge I may get a t-shirt made up with a clear pouch in for it. And wear it to football training.

matilda Isn't it just awful that journos and the government have turned simple factual words into something that has negative connotations. I work in a world where some people take advantage of whatever they can and I have no clients who don't work who live in luxury, who have regular holidays and big TVs etc. It is just not something that happens to the scale it's made out to be. It's so false an impression done on purpose. It makes me mad. It's ok for those in their ivory towers to sit and judge those who are in positions they will never find themselves in, it's easy for them. And really, the conservatives in particular, they simply do not care for anyone less fortunate than themselves either financially, health or other ways.

Rant over.

You are right though. When i am 50. this is still going to be shit. And I am probably going to live to like 90 knowing my luck, another 54 years of back pain!

Maybe we should get some t-shirts made up with catchy disabled supporting slogans on. I can't think of anything witty right now so will need to work on that. losty you can start us off

Nothing is touching my leg pain. It's constant stinging, fuzzing, burning, throbbing in both legs into feet. But, two more days then a week off work! YEY! Just got to go steady.

DD took another tumble today, tripped over a step and landed awkwardly onto some concrete, bit graze right alongside her other one on her thigh! and a grazed elbow to boot. I might not let her out of my sight for a while. Least this time I was right there to scoop her up!

It reminds me (it was after her diving lesson). Do you think I can jump off a 3 metre diving board? Nothing silly like doing a pike fall or other dive, just a simple pencil jump (not even a tuck jump). I want to take DD to the public diving session to practice her techniques and she is a little nervous about going off the 3m on her own as she has the instructor next to her normally. I said I will jump off it with her. Have I just said something I can't do?

I went to do my Auntly Reading today with my naughty niece. She did quite well but I'm struggling to convince them, as a family that she needs to do a bit every day, not just once a week with me plus limited one to one at school. I think I'm right? I always did reading with my boys. We loved it.

Anyway, she proudly showed me the plaster on her knee following a fall off her bike yesterday . Must be the warm weather? Maybe there should be a government health warning?

Oh, pavlov, not so sure about the diving board. Sounds jarring, but then I'm a bit more cautious than I used to be. Maybe try the springboard first?

DD said I should limit myself to the springboard! There is a 3m springboard but I am not sure if I am brave enough for that, and nothing to do with my back . Maybe I will just do the 1m and try to persuade her from there. It's not due to any huge desire on my part, I have never been good with heights but I want to encourage her to get over her own fear of jumping from the higher boards, seeing as that is what divers do! So, you think, if I jump from the springboard, and lift off with my toes and keep my body straight, no attempting fancy assed jumps, I should be ok? There is no impact on the water is there if I go in feet first?

I completely agree with reading every day to get it set in stone. It's like being good at anything, you can't do a little bit every now and then, it has to be repeated and repeated and repeated. DD's diving instructor has a son same age as DD he is an amazing diver. Like one of the best there. this little kid somersaulting off the 10m boards. But he practices every day for about 2 hours while his mother teaches. Same with reading, reading has to be done every day and it has to be fun. It can be comics and magazines and story books and poetry and fact books, but yes yes yes to every day. But, if you do struggle to convince them, she will get there, just will take a little longer with you persevering. And when she is there, she will sneak into bed with a torch at night to read when her parents think she is asleep!

We have read to our children from the day they were born. DH used to just read whatever he was reading to them! We read to them every single day before bed unless I am playing them some french nursery rhymes, then that replaces the stories. I am not looking forward to the day they don't want stories any more. DD is not there yet, but soon she will be I think, sometimes she asks if she can just read to herself now

and yes it certainly sounds like bike falling weather!

ah tramadol I curse you! I cannot sleep despite being tired. I cannot focus on editing despite being wired.

But. It has taken the edge off. Oh wait no. that's lying down flat that's doing that.

I don't think enough can be said for the whole lying down flat business . As for jumping off the high board, I really don't know. Only you know what you can and can't do and I imagine that is outside your current sphere if experience. I would go for it and see but then I really like jumping into the pool! Are you 100% that you can do a nice pencil jump from that height? I think fucking up and rotating or having your legs forced apart would probably not be so good for you. I can't do t-shirt slogans I am good for the maths not the words.

Matilda I go in and do reading at DS3's school every week, I love books and reading so it's my attempt to be useful since work is a bit thin on the ground. There is a good correlation between the good readers and how much they do at home but it isn't set in stone, some of them just take more time to click no matter what the input. I'll have a look out for the books the girls enjoy but as I read with years 3 and 4 but they only start English in our school in year 3 I'm a bit out of sync with what the equivalent in an English school should be. Ds3 is an awesome reader but that is because he is addicted to the computer so he has to read before he is allowed on. I am a scary mummy!