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!! ;)

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6 Replies

  • You certainly seem to have the art of stayin positive in your tool kit.glad you seem to be on an up. It's not easy to take off when you can't run takes a lot more flapping I find. Take care and carry on scattering your positiveness.

  • I am so sorry to read of the horrendous and awful time that you have suffered and your knack for staying on top of things sounds inspirational. I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Hi ZedT

    So sorry to hear about the rubbish time you have been having. I must say though, I enjoyed reading your post. You have described the frustration we feel sometimes so well. I have had the same experience with a paramedic and it wound me up so much. Good for you for telling them what for! Your positive attitude is great! Xx

  • Thank you Tuscany. I have an awful feeling that we are not the only ones. I honestly try to be patient, but extreme pain makes me short tempered, and he was a lovely man bless him, but I had clearly had enough. Comedy is not appropriate in those situations, action is maybe he will remember, I hope so. X

  • i completely agree with tuscany! and thank you so much for this post. i have a compressed S1 nerve root and have started having some minor incontinence. no one told me there is a connection, so i will talk to my md about this asap. you have probably saved me from becoming completely incontinent!

  • Oh please do speak to them. Sadly it is too late for me. The surgeon explained that the nerves controlling the bladder are very very tiny, almost microscopic, so once they are damaged they are are impossible to repair. Another thing you could do to make life more comfortable is ring your local Continence Advisor. You do not need a GP referral. They will assess you and can help by prescribing pads and can scan your bladder at home to check for other problems. Mine are lovely and even helped liase with the GP, who ignored my incontinence for months. I do hope there is something they can do for persistent! X

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