More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

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.

So come and join us for moans, advice, downright rants or just a laugh.

[GoodnessKnows]

Nobody said anything about post operative depression. Think I may have a bit of post traumatic stress. Or maybe just need to balance out as I had 12 veeeeeery stressful weeks and have only been recovering from op and back in the real world for a few days (2 little public appearances this weekend that depressingly wiped me out!!!). Didn't expect this exhaustion n don't understand it.
Sorry
I'm going on
I'm a bit of a negative (fearful) person by nature - saved only by a warm heart and a witty sense of humour. The SOH muscles got a good workout both pre and post op. Definitely stronger! Lol

[GoodnessKnows]

But when I was out this weekend (stayed with DD at kids' party when DH dropped us off), and the next day went to bigger kids' party with lots of people and then to local tea room/ park for an hour - I was quiet, overwhelmed. So much more self contained than usual. Than my normal self. I honestly think that's possibly a good thing. But I didn't like feeling it was all too much / too intense. And both days I had to go home and spend the rest of the day in bed. My parents want me to do school pick up soon. I can't. I tutor 5-8 which is tiring but I enjoy and am doing just a good a job at as ever - just couldn't do school run and then work and... can't face crowds of mums who didn't contact me (despite chatting at the gate for 1.5 years on a daily basis). I feel angry and hurt - uncared about. Someone put it really well - I mistook 'friendly' for 'friend'. I DID find a few lovely people were unexpected friends I'd previously thought of as acquaintances though.
Even my close friends didn't pop in every week. Once or twice in 6 weeks!!!!! I know life's busy but...
I hope I'd never do this to another school mum if she suddenly 'disappeared'. It's quite upsetting.
Anyone relate?

[Matildathecat]

Yes. Actually I'm pretty sure we all do in one way or another.

I've told you about my work 'friends'. A brother who didn't call me for five of the worst months of my life, and more. So much more.

The whole thing is and was totally traumatic and unreal. I got lost in the whole ghastly mess. Life thrown upside down in a moment.

Post traumatic stress or depression sounds more than a possibility and probably getting the counselling is the best thing. It won't make any of the crap go away but you haven't begun to process it yet.

And time. Yes, quite a lot of it. I've talked before about the amount of energy being used up in fixing your body but also in calming your Mind. Just allowing yourself to be. Although dull the mindfulness apps are calming. (And you do still sound panicky).

It's great you have had your cancer removed but you are still a cancer patient so take whatever is on offer. I mean it, you absolutely qualify and the cancer charities do have resources.

Pain...it's just way, way to soon to say if it will go. If it is nerve damage, wound or simply postural. I say simply though actually when I was told my back pain is largely postural I took real umbrage. I was working so hard! But it is. And it's not my fault. My other injuries make me have an abnormal gait and posture. But, Pilates, heat and massage do help that sort of pain. The nerve pain is more tricky.

You're right, surgeons aren't that concerned with chronic pain. Because it's not their job or expertise. There are lots of good pain specialists, though . And they don't only give out drugs.

I'm so sorry. There are no quick answers. Forcing yourself won't help. Accepting a slower pace for a while might. Take meds if you need them. And try to put a few fun things in your diary. It does help.

I'm reading back and hoping I don't sound preachy or finger wiggling. I so feel for you but right now I think you need to stop fighting and allow a little more time.

Here's an un mumsnety hug. (((((( ))))))

[LoonvanBoon]

Goodness, you've been through so much it's not at all surprising you're feeling wiped out & down. Sorry, I got the wrong end of the stick re. your thyroid meds. - thought you were listing them as something you'd given up.

With the friends thing, I know people who've had cancer who said exactly the same thing as you. When my late mum had cancer one of our relatives (who mum had helped out a lot in the past) didn't visit at all because, according to her daughter, she "didn't know what to say & thought it might upset her to see my mum looking so ill". Funnily enough, I've not made much of an effort with her in the years since Mum died - silly cow.

I think it's different with ordinary run-of-the-mill back problems / sciatica like mine. People aren't scared of that, or of saying the wrong thing. It's one of those things that's relatively common so everyone has an opinion to share - I need to say an osteopath who can "push the disc back in" (yeah, right) or apparently rubbing on a bit of tiger balm can cure all known back problems. It's annoying but not hurtful.

My MIL was more hurtful - but then she has form for that - when she said early on that I have a "very convenient back problem". This was when she was staying with us last June, only a few weeks after my problems had started. I couldn't sit at all at that point, was getting very little sleep & was in a lot of pain with nothing prescribed but NSAIDs. But because I could walk short distances I clearly couldn't have a real problem. And I was looking after her, cooking for her etc., in tears of pain when I was alone in the kitchen. She hasn't been invited back since.

[PavlovtheCat]

I found with my friends that largely they were supportive. But. I think that is because I had already sorted the wheat from the chaff so to speak following the birth of my daughter and the deaths of my parents and DH's parents in a relatively short space of time. that was a difficult time when I struggled to forgive lots of people around me for 'walking on the other side of the street'. So those around me since my back has been problematic, I already those I knew to either be flakey but I accepted that is how they are and not come to rely on them for anything other than social friendship, or i knew them to be true close friends. And the circle of true close friends who I could completely rely on was already small and I did not expect anything from others outside of that.

As for work. Well, there was certainly no support and I did feel quite low that I was off for on one occasion 5 weeks with no contact from work, no card etc. And following my surgery which they knew was happening, I didn't get a card for a month, and only then I got one because a colleague in my team had dislocated her knees and got flowers, cards, chocolate etc. They forgot that my emails were still there when I got back from sick leave and so I was still included in the whole team emails. I also felt really gutted when recently another colleague got flowers and some chocolate sent to her from my team, to 'cheer her up' following being off for 3 weeks with back problems and off again for a few weeks longer. I felt like actually crying and had to keep it in. I think I posted here. It was not that I didn't want my colleague to be cheered up, I felt sorry for her as I understood, but I felt gutted that I was not part of that 'click' at work, that people cared enough about me to get me flowers.

But. I resolved this, by reminding myself of that small close knit circle of friends I have. One in particular who is amazing. And realised that actually lots of people don't have that, and I am grateful for that.

[PavlovtheCat]

Scrap that re work support. There has been support, but not colleague support from my team, but from my bosses and HR. they have been supportive in giving me time to get myself back on track, and colleagues in the bigger area of office who have shown some concern, but no actual giving a toss from my team.

[PavlovtheCat]

and DH's parent. His MIL is still very much with us and I hope that stays for a long time yet! his dad died just before we fell pregnant with DD, my mum died just after she was born, my dad (who I didn't know really) died a few months after my mum died. MIL is running around aged 80 on two new hips, a near cochlear implant and a toyboy partner

[Matildathecat]

Oh the great mil institution. You've gotta love 'em.

Mine is lovely but has looong form for bad remarks.

Recent:
I visit her in her nursing home ( neuro condition no cognitive loss)
She has another visitor, a very nice, well connected local lady I've not met before.

Mil: 'Oh Patsy, have you met Matilda? She was fired!'

Me:
She:



pavlov, blimey what a shitty time you had.

[PavlovtheCat]

mailtda it's ok. It happens to everyone eventually, just happened much quicker and in quick succession for us. Rather than be upset about it now, I see my mother in the children, and remind myself that she met DD. She was 7 months when my mum died and so that might not have happened at all. She did not get to meet het granddad at all, but DH thinks maybe that is why DD came along when she did, life after death so to speak. Things happen for a reason and I can see the natural order of it now, albeit far far earlier in our lives than it should have been. But that has taken time to come to terms with, to adjust to the loss of my mother in my life. It used to be as raw as having a missing part of my body that I could not identify. It actually felt physical for a while.

The one thing I simply do not understand though, is why my back problem is thus. That logic I don't understand. I have not yet come to terms with that, with the impact of it, the longevity of it, the possibility it might be a problem for the rest of my life. But, that is largely due to the lack of information I have to make my peace with it. There are so many 'i don't knows' with all this and so I can't move on yet. Th.s is the one part of my life that has consumed me and that I have not been able to find a positive in yet.

I am trying to be 'normal' for my time off. Use it wisely. I am trying to have the attitude of 'if it doesn't increase damage, then I can manage the pain' and get on with it. Today, I am sort of suffering for that. I am sick of explaining to people why I can't do things. I had a parent of the children's school friends over yesterday with the children, and felt I had to explain why I was moving so slowly all the time as I don't know her as well as some other parents. I felt also that I had to do more with the children in the park than I would normally to not appear to be a victim, incapable of being 'normal'. I felt embarrassed. I don't always feel embarrassed, but yesterday I did. I also felt embarrassed on Friday, as I went out with a friend for tapas and a glass of wine, and I sort of shuffled/stumbled across a road with people un the car looking at me, I swear like I was already drunk and I had not even drank anything. I wish I had taken my crutch, to show I was walking like that for a reason, then thought, why do I need a fucking sign?!

[PavlovtheCat]

MIL are definitely tactless. I wonder if they go to some kind of training school once their sons are married/about to settle down properly, to learn that foot in mouth behaviour with zero recognition they have done it? MIL is also lovely most of the time. However, she has had a back problem too don't you know? She sorted it by hanging off the doorframe on a regular basis, and not giving in.

[LoonvanBoon]

She sorted it by hanging off the doorframe on a regular basis, and not giving in.

[LostInWales]

Hello sorry had a weekend off the thread. It's been a bit of a year (understatement) which has been crowned with H leaving this weekend (my impetus but still hard to come to terms with), I'm going to read through everything but please please forgive me if I don't post comments to you all! So, bad back no partner, bring it on. I am achey as hell but I did loads yesterday because I wanted my house how I like it. We've all been through the wringer a lot eh?

[Matildathecat]

lost, oh fucking hell. That's horrible. Poor you and dc. Even if it's what you 'want' it's obviously for some hard and bad reason. Sending and all to be delivered immediately.

Of course don't post if you don't feel like it but you will be right in my thoughts along with all of you on this thread who have had a crappy time.

Funny thing is I don't include myself in that statement. I'm not sure why ?

Take care all of you.x

[Matildathecat]

My MIL didn't go to the training school, she ran it.

Too many examples to quote but trust me on this one.

[PavlovtheCat]

losty [hugs]
Oh my lovely. I don't know what to say that doesn't sound glib. I am so sorry. It might be what you 'want' but that's not going to mean you are happy about that. I hope you have lots of people around you right now. Come and swear, shout, scream, cry, whatever you want to do here, whenever you are ready, if you ever are ready to. Until then, thinking of you xx

[Nancy66]

LostinWales - sorry to hear that. As if a bad back wasn't miserable enough...

[LostInWales]

It's ok you know, been building up to it for a long time and now I can see a future where I get a go at being happy. Onwards and upwards .

[Matildathecat]

Go losty! Come and talk to us of you're feeling blue. Glad you have your positive hat on, though. Sometimes it really is just the best thing.

Hope you are controlling the pain. Can you sit back and enjoy looking at your nice sorted out house? And RL support, call them in.x

[LoonvanBoon]

So sorry, lost. & to you. Yes, get people in to help - hope the post house-sorting aching wears off soon.

[GoodnessKnows]

Loon, I laughed at the ignorant but well-meaning 'push the disk back in' / 'tiger balm' comments.
I gasped --my mouth is still open/- at your bitch of a MIL. Fucking hell!

[GoodnessKnows]

As for not knowing what to say, I get that. But showing up is a start. I actually TOLD people what to say and instructed them NOT to talk about it pre op. Even I couldn't handle it.

What gets me most now (and I'm sure it'll change again) is the constant stream of 'oh but you look really well' 'I expected you to be lying down'. They look at me as if I'm a total fraud and quite frankly ... a disappointment! It's a joke! I'm sure they don't think that really but when making time in their busy lives to visit me once in twelve weeks, I guess that they assume I'll look like I almost died and could still cark it at any moment
I still have make up and use it! I try to wear my nice normal clothes (now that there aren't any catheters, back drains or scars preventing me from doing so. Looking well makes me feel better but gets on my tits as gives the wrong impression to others - clearly.

[GoodnessKnows]

Oh Pavlov. You do really been through it. My DH lost both parents in a short space if time around the birth of both of our children (3 years). That was hard enough. But to lose your own parents too. Did I understand that correctly? Just too awful to comprehend.
You're exactly right about the clique thing. Had I been in the one I'm thinking about, there's have been incredible support. But, apart from this group and SW, I've always had individual friendships. Feel left out of groups in general. Always have. That gets to me at the best of times when standing at the school gate - but was made worse by my craaaaazy notion that I'd get a class card and flowers. Why would I even think that?!?! I did tell about 6 of the mums I've spent a year and a half talking to at the gate. Wheat vs chaff; friendly vs friend. I'm getting it now.

[GoodnessKnows]

Sounds like your team are selfish Cxxxs, Pavlov.

[GoodnessKnows]

Pavlov can you tell my memory is still crap with all these mini comments your MIL sounds fabulous.

[Matildathecat]

Yep. Get it all the time. 'Oh, you look great. You must be feeling better?' Erm, no, I just make myself look presentable and I like clothes. Oh, and I have 'plenty' of time. Or indeed, way, way more time than I ever knew existed since I have no job and few regular activities.

So, it's a moment for 'Thanks. Of course it's early days and I'm still very fragile but ready for cheering up if you fancy popping in any time?'

Although it's very sad your friends clearly haven't quite 'got it' and seem to need a nudge. I know you are dreading the school pick up. Is there a friend you could go with?