The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

A family member of mine actually had a very big payout from CI insurance too. She said a lot of people told her how lucky she was. She replied she would much rather not have been unwell. But if you do have cover and you get something it will be a big help so worth checking out.

Matilda I am but hope your back stops hurting so you can enjoy yourself.

Nope. No CI insurance ;(

matilda oh but you absolutely do deserve it, and hope your pain reduces enough to enjoy lunch.

I have no idea why I can't have the injection. The reason the nurse gave made no sense. I just don't know what's going on about any of it. I have lost my way in the of who to talk to about it, what to ask for, what to expect. I still haven't had my MRI results responded by the neuro. I thought he was abrupt as hdis manner, arrogant as a skilled surgeon perhaps could be. I now realise he just doesn't give a toss.

The reality is, my job IS now at risk. I have just recieved my Letter of Assignment regarding the transfer of employees from public to private sector, which confirms that my employment will transfer to privat e company from 1st April. I don't know how this will affect my current disability relate measures in place re flexible working, hours, realistic time off before formal absence meetings take place (ie few weeks compared to the normal 10 days/3 separate absences for full time, my part time equivalent is 7/2), understanding of my situation etc. but more than that, it is likely the current very supportive environment that has worked to keep me at work will disappear and medical dismissal is going to be on the cards very quickly indeed. I don't yet know who I am going to be employed yet, so don't know how it will be managed, but a privat company wont have spare money to chuck at me. So I really do have to step it up or else see my career disappear, and it's going to happen this side year.

matilda how are you feeling?

How is everyone else?

Oh sorry you don't have the CI goodness, of course you can never be sure if you would get anything from it anyway as they change their rules all the time.

pavlov that sounds worrying. It is worth trying to find out more about your rights as well as if someone will give a second opinion about the injections. Employers can be sneaky about getting round rules to suit themselves as recently happened to my dh when he got a pay cut.

live I have just posted in Employment actually to see if anyone, Flowery or other employment specialists can guide me what I need to be asking of my employers and my union. The government are sneaky themselves as they know there will be a surplus of staff transfer to new company, and they won't offer voluntary redundancies, knowing that's the first thing companies will do when they have got their contracts and our terms and conditions, and redundancy rights are no longer protected. Apparently the unions have said they have negotiated 7 year protection on length of service rights but I don't know if this is formally agreed. Of it's not, they can mKe me redundant with no years service, instead of 12 years service. But, if the length of service is protected, they will dismiss me on medical grounds as soon as they can, I am pretty sure of that. So it's important that I get things moving to show I am making steady improvements. I have done that, as prior to surgery I had weeks and weeks off regularly. Since surgery, I've had two weeks, and a couple of days, before this bad lapse, which is a huge improvement, but really, 5 weeks in 6 months is not sustainable for private business so I have to improve that.

No energy n feel sick n dizzy so copy pasting from text to DH
Hope makes sense:

Told nurse what I'm unhappy about including what she said last night
She said 'you weren't like this with me last night'
Bollocks
I told her she seemed angry and I'd done nothing and I was in vulnerable situation
She said she hadn't said she'd lose her job she'd said she'd get in trouble
This is true
I remember now
But still
Stupid cow
I said she made me feel afraid to call buzzer. Everythjng I feel
She said I have to understand their situation
I said I'm happy to and it might help but pls understand mine
Asked another to empty the fxxx bin (not in those words) - it's open n bulging with everythjng
Doing it. Not smiling
Certainly not brilliant care
Hey ho
Eating now
She'd said kitchen close n I said I needed to eat before some of the meds
She found it
Eating n trying to b calm

Told them I'm tired sick n dizzy
Still no sign of them
Will call again (nervously)

Gosh Pavlov. What pressure for you to be under. I suppose it's a goal to work towards in a way, but all the same, too much external and very real pressure. I hope you naturally do make enough progress to satisfy a private company if you're moved that way. I'm not sure whether I understood his correctly. Hope so.
Xx

goodness - I hope you are feeling better soon
maybe behaviour of your sone at school changed because he is worried about you?

I think he has problems anyway (perhaps asperges/ autism) anyway. But it is only sensible to assume it would be exacerbating his difficulties. I think so, anyway.

goodness, just in case you are awake I'm here. IME the night and sometimes weekend staff are just not as good as you get through the day. Maybe less supervision, maybe tired fucking lazy. Anyway, continue to ask as pleasantly as you can for everything you need. I'm once again, furious on your behalf. As soon as the ward sister is back on as for a 'chat' with your DH there and tell her/him your concerns.

How are your dc? Hope they are coping and your other family ok, too. What a time you are all having. anyway! I'm here for handholding if you need it.xx

Hello Matilda. Thank you. DS off the wall as usual - unable to listen or respond to a conversation unless we first respond to his questions about the electrical gadget he's set his eyes on. There are so many electric gadgets in my hospital room. Lol
I'm wide awake. Painkillers wore off at about 5am. Only reason I'm not allowing myself to feel low is MN (yes, you lot), FB (a secret group of friends) and the promise of a visitor at about 11, 12.30, 3.30 and maybe this evening.
I never before understood the value and importance necessity of visitors. ,puts be what it's like to be old, too they bring sunshine and distraction. Wonderful.
Put your steel gloves on, I might squeeze hard out of a mixture of emotions: great fear over the results, sadness (bit 'why me-ish' this morning) and pain (meds not helping this morning).
Xxx

If the meds aren't helping have you tried Mindfulness / meditation? Jon Kabat Zinn is the guru of this and I have a good app which I listen to sometimes (should more often).

Sorry ds is being such a pickle. Do you have some toys or books in your room to distract him? Six is an awkward age I seem to remember.

Glad you have visitors to distract and cheer you. Steel gloves and body armour on, though a bit sweaty here! I'm resting after a walk and very short swim. Hey ho. Still, available for chatting if you are bored...xx

Blast. Lost reply. Boo
Yup
Up for a chat ;)
You're up early. Triathlon training?
Gd I hate sports. Used to like swimming but such a pain fir my hair (naturally extremely curly, coarse n dry. Straightened it and sooo much easier to manage n nicer - but ruined by chlorine etc).
Not used to being shouted at by a child. He does it to my DM too, who's refused to come to ours' to help in evenings now. Bloody useless n annoying. It upsets her n she doesn't know what to do. Spent her whole visit (1 Hour too late and lasted 10 mins max once kids had gone) telling me how difficult he was and that I needed help. Great! Thanks! How annoying. I'm in hospital. I know I need help. I'm desperate for it. Nothing!

Are you abroad or in the UK?

Don't want to bother nurses (thus morning said 'can't u turn yourself?'). Felt like a huge irritation to them. No I can't as I can't move catheter and leg straps. It's like being strapped to bed.

I'm in Singapore on holiday so been up for hours. It's 8 hours ahead. Blimey your dm sounds more annoying than your ds. Refused to help you?! Sorry to say I think you'll have to look elsewhere for help . How is your DH now?

I do seriously think it's worth asking SS if they can help. Your family is in crisis and they can provide help. Maybe someone for a few hours after school etc. school might be able to assist with all this. SS are not all about taking kids away, much more about supporting families in need. If money isn't an issue you might be able to get a mothers help with sn experience through an agency.

Not sure if I've said this before but I was a midwife for 25 years so know healthcare quite well. When the shifts change please, please ask to speak to the nurse in charge and explain just how crap you are feeling. Pain, anxiety, unusual appendages etc and you need the nurses to respond. It doesn't need to be a complaint as such, just a discussion about your needs which are currently not being fully met. All these negative comments are truly detrimental to your recovery.

If meds aren't helping say so...there will be others they can add.

Do hope your morning improves.xx

Ps triathlon training? Haha, I wish. I can hardly walk! I used to be a really keen swimmer but now it's more hydrotherapy with a few furious lengths of crawl in a sod-it kind of way.

I must've read your posts about your walking / difficulties. Please remind me. Sorry. I know it's a pain to do so. May call ss. Worried though. Trying to get an after school helped who works at a local school specialising in autistic pupils. We shall see. Feeling too worried to even think about that.

DH was in Singapore recently. He spotted chewing him on the floor! Ghasp
How do you like it there? I know only one person who loves there. She's lovely.

My latest whinge. Or is it valid?

That's it. Much as I'm scared and hesitant to complain, what has JUST happened to me is disgraceful - as well as disgracefully embarrassing. I'm embarrassed to tell you but am as much documenting it here as getting a reality check from you that this IS wrong. Insane.
7.03am I was watching Breaking Bad. I'd been awake since 5.30. Taken painkillers as was uncomfortable. All good, until...
Noticed I'd been hosing myself down like a car wash for gd knows how long.
My bed was soaked. My new nightie was soaked. Completely. Think of your child's worst bed-wetting and proportionately multiply it for an adult.
I rang my buzzer.
Me: my catheter has come apart and I'm wet
Nurse: I'm just handing over. Handover nurse will sort it out
M. What time is handover?
N. 7.30 (it was only just gone 7)
M. I can't lay here in my own piss for half an hour
N. I can't do this.
M. I need water to wash with and a change if clothes
N. I'm busy doing handover
M. Just bring me water please (being polite. In shock. Appalled. Embarrassed)
She brought it with tissues.
I politely asked her to move the magazines so that I could have the bowls in front of me as I outrageously assumed she'd give me one for soapy water and one to rinse off - as they did yesterday.
N. I can't move the magazines cos of my back. I've been nursing for over 30 years. Bad back.
Didn't want to bring my sponge aaaaaall the way from my shower. Private room. It's behind her!
I asked again. She did.
I washed. Bed drenched in my own wee
Mortified
I fixed the catheter
I stood for the rest time of washing.
N. Can you go over there to that chair to wash please.
M. I'll faint. I can only sit at end of bed. Are you told at handover who can sit, walk, stand, who faints, etc.?
N. No. We are night staff. We don't need to know. Patients just sleep.
M. What if we need to go to the loo?
N. Bed pan. I just do bed pan at night. We don't mobilise patients at night.
(What the hell! So a person capable of going to loo, hopefully me one day soon, will be TOLD to use the bed pan?!)

I was left alone for minutes at a time, standing waning myself with the door closed.
Martin Cowan knows what happened yesterday when I was standing. It's dangerous. Particularly on a wet floor.

Nurse returns
M. I can't sit down on the bed. It's covered in wee. (Was absolutely drenched).
N. I can't do that. I'm handing over and I have a bad back.
M. I will faint if I stand much longer and I can't sit down.
Nurse leaves room. She let's care assistant change sheets.

Nurse comes back to ask where care assistant is. She needs her.
I ask her whether the catheter might open again. No. No. I've fixed it.
No
I fixed it.

So shocked. She really was going to leave me in my own wee for an hour. Handover was in 30 mins. And then by time meds are done at 8, it'd be 8.30 easily).
I also can't believe that night nurses are not told how capable a patient is of standing, sitting, moving. I've been asked daily to do things by nurses that are not only impossible for me and not yet advised unless supervised by physio and done in gradual, monitored fashion.
My nurse has 3 patients to look after.

My last blood pressure reading was 88/65
It was the nasty nurse who took it.
100 is the lowest limit isn't it, Debbie Jacobs?
It's part of the reason I'm fainting and finding it

Dolores is a care assistant. She came and took the reading/ BP test. I am therefore aghast that even if no decent word of mouth or written notes were heard or seen regarding my ability to stand, etc. she'd have bloody well remembered my low blood pressure.

Staff Nurse Alima works here but usually in a different ward. She's ... I don't know what to say.

Am I dramatising things? Am I just overwhelmed with embarrassment? Maybe. Reality check please, girls!

I feel I don't want to complain as she's a BIG personality.

Alima is also the one whi was introduced to me (she stood far enough away so that I couldn't see her) as my night nurse last night. I expressed my concerns re taking my third dose of senna and not being able to reach the loo. She said 'I don't know. I don't work here.'
She was wearing the red bumpkin' drug distributing bib and a nurses' uniform?!?!
M. So who will come if I need to go to the toilet.
N. Someone else.
M. Not you?

N. Maybe.

Eurgh

Oh my AFG, now I've heard it all. I'm appalled.

Please ring the bell NOW and ask for the Nurse In Charge. Do not accept anyone else. Tell her the above and say you would like to avoid a formal complaint so what can be done?

Tell her you do not wish to ever be 'cared for' by these people again.

I could weep for you. I had a very similar experience last year with an overflowing bedpan, saturated bed and urine all up my back. It was mortifying.

Have to go out. Please do that. They are a disgrace.

Chat later. My dismal story in part is in the grey box above.

goodness you need to complain loud and clear.You need to be taking to supervisors, ward sisters, modern equivalent of matron etc. can you get one if your visitors to advocate for you.that treatment is not acceptable ever.it was nothing to do with handover she was just lazy and coastibg through last hours of shift

I agree with both of you. I'm feeling sad. Degraded. Needing independence but stapled to bed with leg pumps n catheter. Not pooed since Monday.
Sad. Sad. Sad after this morning.
I will tell head nurse when she's here I refuse Ruby or Alima. :(
Matilda, I'm sorry I've not even read your grey box. Being scared n desperate has turned me into a very selfish MNer.

Hi goodness that is terrible. Good idea to write it all down. I laughed at the bad back thing! Don't we all, you should have replied. I agree about complaining. They should have someone available to help with emergencies during handover. You could say that to head nurse when you complain.

Going to tell head nurse everything n refuse those two horrible witches.

Let us know how it goes goodness I hope you get some help from the head nurse.

I have started noticing some discomfort in a different part of my spine to usual painful area. It is about halfway up my back. I wonder if it is because I have been moving differently due to my lower back pain. Is there anything I should do about this?