The Art of Staying Positive..... and other impossible things!

So, i haven't posted for a while, as i had reached a status quo of sorts. I've been seeing the same GP and building a good relationship with him, and we were working on tweaking my medication so that i was having large periods during the day where i only had what i call "background pain". This was a real improvement and i was even managing overtime at work and some socialising. Fabulous.

I started having some gastric symptoms which i thought may be my Naproxen, so i stopped it (after talking to the GP) and he upped my Omeprazole for a couple of weeks. What a mistaka-to-maka!!!

The pain started whilst shopping with a friend- i turned round funnily and felt the familiar sharp stab of back and sciatic pain that i had forgotten. "Ooops" i thought, and told Aron when i got home. i took some Zapain and put my ice pack on and settled in for the evening. Aron went to bed, but as i wasn't yet comfortable i decided to stay up awhile, trying to control the now increasing pain.

By 1.30 am I had been stuck, standing on one leg with my head resting against the living room wall, for over two hours. i was desperately banging on the wall, tears and sweat streaming as i called for Aron to wake up and help me. i couldn't reach my phone, i couldn't move even an inch from my position. It was the dog who rescued me....she ran upstairs and whined outside the bedroom door and Aron came running. He called an ambulance.

First a paramedic, full of jokes and laid back attitude, asked all the questions and stood there chatting away to Aron about the dog. Oh my goodness i was ready to punch him!!! I bit my tongue, tried the gas and air and in a barely controlled voice suggested either taking me to hospital or giving me some muscle relaxant. PLEASE. He gave me an injection which had no effect whatsoever, and then some morphine, which made me feel sick and dizzy but didn't help the pain. Then he called an ambulance because i was becoming rather irate. The ambulance came- wonderful people who took me seriously and dealt with me quickly and efficiently, propping me up and tying me to the head of a stretcher in the ambulance as i still couldn't put my foot on the floor or sit etc.

The next few hours are vague if i'm honest. I do remember some young doctor telling me that i didn't have a herniated disc, i had something wrong with my neck???? i begged to differ.

In that controlled voice i was now perfecting.

She came back sometime later and informed me i had a herniated lumbar disc. i know. I told YOU. ive known for 18 months. Controlled voice is becoming very slurry and weary now as more morphine kicks in. Sometime later that day after being rolled, poked, prodded and answering endless questions (all the same) to many many many different people i was moved to a ward and left alone. i had been awake for about 32 hours at this point.

I needed to change my pad and nightie, i was soaked, so i buzzed for a nurse. I couldn't sit up (although of course we had to try anyway as seeing is believeing eh?), and i was given a bed pan. Two HCAs cleaned me and my bed up and although beyond tired and still in terrible pain i felt a little better. I have since read my daily report for that time, as i was so drugged up it seemed like a dream. All that was written was "Wants to sleep all the time. Constantly incontinent of urine". Hmmm. I have NOTHING at all to say about this documented ignorance. Because i have no words to express my feelings. Not that i can write on here anyway.

After a few days a young Dr and an escort come to visit. He puts a pair of gloves on and i know exactly what hes going to do. They are checking for a condition called cauda equina- a very serious condition causing paralysis- something they should have perhaps done a few days EARLIER!! However, i'm not fussed as i'm pretty sure i haven't got it. i've been incontinent of urine for a year or so, as my S1 nerve root has been compressed and caused irreversible damage to my bladder. i mean, its all in my notes and i had told them, but maybe they just wanted to check anyway. Fair enough.

I roll onto my side and he inserts his fingers into my bottom. (this is to check i can feel it as lack of sensation is a symptom of cauda equina).

OH MY GOD>>>>I CANT FEEL IT!!! Panic sets in...but i can feel SOMETHING...doesnt seem to be in my bottom, its actually a feeling in my lady bits. What on earth...? i ask him to check he has his fingers in the right hole, he says he does. i ask him to remove his fingers and try again. he does and THIS time i can feel it! in my BOTTOM. He had his fingers up the WRONG hole! The escort nurse looked very worried, and i told him i forgave him but to be please be more careful. He did apologise, and later the Ward sister came and apologised too.

My new found friend in the next bed- 84 year old Winnie- was my salvation. We cheered each other up, had midnight feasts, went to hospital chapel in our wheelchairs (mainly for something to do and a good sing song) and comforted each other through our various pains and procedures. I'm 46. The age gap didn't matter. We needed each other in this place of incompetence and chaos.

i must admit, i was very rude to the physiotherapist who came to try to sit me up. i THOUGHT he was saying "The pain is all in your mind" so i told him he was talking nonsense and to leave me alone. Two days later, when my drug addled brain had time to reflect i apologised as i realised he was actually very nice and was trying to encourage me to USE my mind to push through the pain. He was very good about it, and said at least i hadn't hit him which apparently i had threatened to do! the shock! i was so ashamed! just goes to show what extreme pain can push you to.

Anyway. im out, im recovering, i have different meds now, with morphine and diazepam for emergencies. AND (those of you who have followed my stories will like this bit) ive had SURGEON< SPORTS PHYSIO and PAINCLINIC referrals....all at once!!! only been waiting 18 months for them! hey ho.

Ive seen the surgeon....a very nice man who seemed to listen and has booked me for a spinal block, but his letter to my GP was very odd. it made no mention of my pregabalin under my medication, says i take diclofenac when i don't, says i work in the NHS which i don't, and says i have no bladder symptoms which i most definitely do!! it is like a completely different surgeon wrote the letter! My GP is as confused as i am. i have emailed his secretary and asked for the letter to be amended as it is inaccurate. Hope it doesn't offend him and delay my spinal block. :(

I am back at work, after five weeks off, and we are moving to a new and adaptable house. YIPPEEEEE!

My mobility scooter is still my joy every day, even though it got wet and the electrics conked out, and we are going on holiday in July. Bet my spinal block gets booked for then....ehehe only joking, I'm happy really. What i have learned this time is LAUGH. Try your very best to see the positive in all the crappy stuff that happens. For me, it is the only way i can cope. i like a good moan, but i NEED to laugh. i am positive all the time, start that way every day....STAYING positive is the hard bit, especially when depending on the actions of others. So i focus on all the good things about each day and that helps get me through. Its hard work i tell you, but worth it.

Oh yes.... And don't mess with me when i'm in pain and drugged up!! ;)

8 Replies

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  • Your story was both entertaining and equally frustrating about

    the record mix up. I haven't been following your story but I will

    now. So are you doing some heavy duty physical therapy to get

    back what you lost during that time when you were untreated?

    I should hope that you get your spinal block before you go on

    holiday. Most everyone feels better after. I think that the block

    might take a couple appointments because don't they do a

    test before they inject? And when you say "block" do you mean

    that it's a steroid injection or is it an ablation where they burn

    the nerves? Sorry, I am from the USA and I am sure that we

    sometimes do things differently - according to our doctors.

    Oh I can imagine the relief that you will feel if it's a steroid

    injection.

    Are you on a steroid taper right now to keep the swelling down?

    I know, questions, questions...I'm pretty interested in your case.

    I have a little herniated disc it's not a big bulge so they are

    watching it. it doesn't bother me much. I was getting a MRI for

    another reason (lower back ) and they found the disc in the

    thoracic spine, I do believe. X Karen

  • That's ok Karen, ask as many questions as you want. :) My disc bulge is only small too, but I have stenosis so my S1 L5 nerve root is compressed which is what is causing most of my problems.

    I have only had the physio once since i came out of hospital, and it was mainly a lot of questions and assessment and I couldn't get another appointment quickly due to the physio being on holiday, then Easter holidays and then a backlog caused by the holidays, so it will have been four weeks by the next appointment. i have some rather painful exercises to do, and i DO do them, because i have to trust they will help. I will update after my next appointment.

    As for the spinal block, i seem to recall the Surgeon saying that it was an anesthetic similar to an epidural which might offer me temporary relief whilst i wait and prepare for surgery. We didn't discuss it much as it will not be him that does it, but he did mention that my foot might "drop" causing a limp. I am not concerned about this as i limp anyway, (and my leg is already numb from knee to toe). I would take pain relief over mobility any day. This is because i can adapt to be mobile and have good support from people around me. He said it may last three months.

    I was thinking today about the holiday. We are going in a caravan with my friend and his three children, and we are taking our youngest. The kids will be in a tent. I truly hope i have some relief before we go, and i have to come up with a plan on how to take part in the activities, and also the inconvenience and rather embarrassing matter of my incontinence (my friends children are all boys!). I think i will cope for a week, and i am really looking forward to it. I think i will look into hiring a mobility scooter in the local town as mine is too big to take. Lastst year i went camping and had to sleep in the car so this will certainly be an improvement!!

    I am trying to sort out something comfortable to sit on at home and probably a new mattress as our current settee and bed are very uncomfortable and even short periods of time sitting or lying down leave me crippled with pain.

    I have never had steroids for this, only NSAIDS to reduce inflammation. When i tried to stop them the pain put me in hospital. Do you have steroid treatment? Can i suggest something? if you do not have any problems with your disc bulge you could really help prevent the sort of problems i am having by working on your core strength and keeping your posture correct. You should lie and sit in "neutral" positions which allow the pressure on the discs to release and blood flow to the area to help healing. I hope you don't mind me suggesting this, but I believe prevention is always better than cure!

    Today my pain is in a different place than usual; it started in the night, all down the front of my affected leg from hip to knee and in my groin. My usual pain is down the back of my leg from bottom to toe, so this is something new. It feels very deep and in my bones. That being said, the other pain isn't so bad today! LOLOL I just cant win!

    I will get plenty of exercise to day as i am going into work for an Easter event planned for the patients on my unit, and the children of the staff. This sort of thing distracts me wonderfully and people take no notice of my disabilities so i have to get on with it. Life goes on....hopefully a little less painfully soon!

  • Oh my god what a catalogue of cock ups , this kind of care really is unacceptable the fact that the RRU attitude was so poor and don't think of the seriousness of the situation to the doctor prob a junior making such a mistake with anatomy , to the surgeons notes mixing you up with someone else entirely . I applaud your attitude about laughing it off, however this is not small errors this is a catalogue of potential disasters and I think maybe you should write a letter obviously entirely up to you , you sound like you have your head screwed on and have a great relationship with your GP are sensible and can stand up for yourself , not many people get to see whats written about them . This needs investigation . I hope you enjoy your holiday and manage your pain back to the background acceptable pain you've had before .

  • Thank you sianr, it is indeed a proper collection of cock ups! Sadly, I no longer trust anyone who deals with my care and treatment. I find i double check everything from instructions regarding medication, to following up appointments. I always ask for copies of letters to and from the various professionals who see me, and if i feel something is incorrect I always ask.

    This can be awkward, and I have a constant nagging feeling that they will become fed up of me and treat me negatively in some way. This stems from various things such as the ridiculous and ignorant attitudes of some of the Doctors i have seen, to my reading horror stories from other patients who have been discharged from care because they are deemed "difficult".

    i got to read my daily reports because they were stored on a wall bracket in the ward and i was nosey and read it. i'm sure if they had seen me doing it they would have been annoyed. I found their comments ignorant, hurtful and disappointing. it showed a lack of communication, empathy and basic understanding of a patients condition. i only saw that day, i don't want to think about what else they may have written, but i know what to do if i change my mind.

    As for the surgeon, i am confused. He seemed extremely proficient, listened carefully, and dictated his notes in front of me. i rang his secretary when i received a copy of the letter, and she thinks it may be her mistake. i have emailed to leave a paper trail of my request to amend the inaccuracies, but i also asked that she confirm receiving the email and that something was being done to resolve the issue. She hasn't contacted me as yet :(

    Doctors and nurses are very busy people, HCAs are underpaid and work long shifts. But if you are going to ignore the basic principles of nursing and medicine, have little or no patience or empathy for the people who turn to you for help, or are simply too lazy or incompetent to keep accurate and professional records, then you shouldn't be in the job.

    Gone are the days where health workers could write their biased opinions about a patient without getting into trouble (mostly because the patient never found out!)

    Now there are culpability and legal ramifications. So it seems to me some are writing things which "imply" certain things, intending to offer a biased view without openly expressing it. Very insidious. And as for Drs not knowing basic anatomy....well!!! i mean, why do they ALWAYS think they're right? i KNOW my body, how it works and feels and where its broken. God help people who put their whole trust in some of these idiots!

    Anyway, rant over! I DO try to put things right when i can, but mainly i just concentrate on controlling the pain, looking for treatment and adapting my life so i can live it well. Sometimes, i have had a bit of help complaining from another source such as the OT, the Inco nurse or the Health and Wellbeing coordinator. Its a bit like cheating but it works ;) and it keeps me from having resentment aimed at me. i should just say, i nearly trust my GP now....we can talk properly and have a laugh and he does try his best. but he is restricted by the business of the Practice and financial stuff that i don't know about. we did have a giggle when he was trying to change my prescription on his PC and it crashed as he was adding yet another drug to my collection....we decided i had clearly taken up all his NHS budget and shut the system down!

    I haven't had chance to speak to him regarding my letter yet, although he did phone me and left a voicemail so he knows something's not quite right. It will get sorted eventually. i hope :)

  • Good advice as well Karen 😉

  • Interesting story. I am fearful of making any suggestions in case I get my head bitten off. But sometimes all we can do is do an experiment and see what happens.

    Being positive all the time is not good. This is outputting a mind state which takes up energy which is needed for the other things you do. Such as to pick up the little warning signs which says this muscle is in danger of going into spasm I must temporary stop what I am doing in order to prevent the massive pain that comes if it goes into spasm.

    Pain is not in the mind, however the the way the mind responds to pain can increase or decrease the emotional experience of pain. You cannot decrease the pain, but it is possible to turn pain into an irritation that does not need the input of drugs to manage. Alexander Technique is very good for this. It also helps make you sensitive to things you can do to help prevent flare ups.

    McTimony Chiropractic can help reduce the muscle tension in the spine which in turn can help make things more comfortable even if it does not stop the pain. Have a look at the NICE guidelines concerning chiropractic treatment.

    I have been having McTimony chiropractic treatment on the NHS since 1994. It does not cure the problem I have and never will. It does help keep my muscle tension lower than it would over wise would be.

    Not sure if I am being helpful at this point or not.

  • Sorry to say I enjoyed reading your post despite some of the horrors therein. Such a positive note at the end. The episode with examining the wrong passage made me giggle. That poor doctor must have been humiliated !

  • I do agree that laughter is the best medican !

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