This one is for me

The entire duration – years that is – of having this blog the decision was to only ever write ‘happy’, in hope of making somebody smile. Because to not be able to smile each day must be awful.

Today though, this one is for me – more so as a place to put it all down and try my best to move on. Pity parties I don’t want, nor like. So why write this, I say. Easy, this is just a raw blog to let it all out, because despite the many, many medical people I see and speak to, I remain and feel so alone in what should be recovery. Because I’ve rarely spoken to the same medical person throughout, and feel there is nobody out there to build a good medical relationship with, who will track and guide my progress.

I’m now 11 weeks on from injuring my back and so my horrendous pain persists. Taking me from a fully able person to somebody who for weeks was barely able to leave home, let alone barely move, walk, or sleep. And to become so desperate I’d watch the clock, willing the hour to chime and allow me to dose up again. At times all but hoovering up the many pills in the many lined up pots, willing them to take effect. Because during those initial first weeks I was unable to stand for longer than a few minutes without the need to sit, or lie in the recovery position. Meaning it was impossible to e.g. prepare food, let alone shower. Never mind everything else that comes with living a life, including putting on my knickers!

Food was easy, my husband took control. Showering, not so but necessary. It was much a case of wash as quickly as possible, get out, wrap in a towel and sit down to recover before drying. And so it would go, day in, day out, unable to do anything without shooting and or constant pain. One GP advised I shouldn’t be lifting more than a kettle. Although other medical folk advised to get on with life, with a reminder to not bend, twist, reach, lift or sit for too long – not much of a normal life?!

Initially, an urgent MRI was called for, and after results were in – around 3 weeks on – and having had to insist on speaking to my GP and not wait another 10 days for a routine call, the results were: 3 discs protruding, 1 with an annular tear, and one of the discs causing nerve problems and excruciating sciatica. Having then been offered physio or surgery route, physio was my choice. GP explained this would be a physio level 2 who could administer injections as well. Sounded good, thinking it would be have physio and see where and how this worked, escalate as and when need be. Acknowledged this was not a quick fix.

Dismayed on receiving a letter advising first NHS physio would be 20th Aug, almost 10 weeks after the initial call to the surgery, it was a case of what to do while waiting? And yes, I called the physio venue regularly to see about changing for an earlier date. The response being an emphatic NO.

Not one to wait, I’ve tried a private chiropractor and osteopath, and having found each time the treatments have caused further discomfort, or worry, chose not to return for a while and let my body settle. If you can call back to less excruciating pain settling that is. I then, finally, called the NHS physio venue on a Friday to see if they would see me privately in the mean time.

‘Yes,’ they said. ‘See you Monday’. Ecstatic to start recovery/rehab I arrived. Within minutes, the physio stopped questions and took me directly to a private consultant who offered an epidural injection at £500, no guarantees it would last all that long – please book on your way out, and this appt will cost you £100. Note: no physio happened at all. I left deflated.

During this time there were also attempts at suggested exercises by GP and Chiro, which only made it worse. Also, the initial prescribed medication was so low I might as well have been taking smarties, not to mention I couldn’t work out what I could and couldn’t take together of the nerve blockers, pain killers, anti-inflammatory boxes of pills. Pain was so intense, I could barely remember my name, let alone work out a medication program.

The advice at all times mind was to keep moving, which is great, if you can. My limit was barely 20 steps, yet I tried to leave the house and walk up the road, sometimes not even making that. To help I ordered one of those walking sticks that have a folding seat – a hunting sick of sorts. Nope, didn’t help one bit. A dear family at the end of the road dropped off cup cakes and hand made card by the young children wishing me well. When thanking them the mum said it broke her heart to see me hobbling along. Another new neighbour dropped off a card that included her phone number should I ever need anything and an offer for help at any time. I was overwhelmed with the kindness.

About 6 or 7 weeks in and having yet to see my GP face to face, along with numerous occasions of considering throwing myself down the stairs, along with gnawing and punching my bedding in distress during the night, I suddenly found I could barely move. I Whatsapp’d my youngest daughter (in Cape Town) who told me to not be scared about potentially ending up in Hospital and to seek more help. My husband immediately called 111, who told me to go to A&E. Telling them I could neither get out of bed nor get into a car, they called 999. On arrival the Paramedics, within moments, told me they shouldn’t be taking this call, and told me to get up, which I could not do.

Eventually they warmed up and were really helpful, nice and good people. They stayed far longer than they should, until certain I was reasonably OK and walking, albeit badly. And further supplying advice on how best to space my meds, starting at 6am and ending at 2am the following morning, as well as increasing dosage (having spoken to a Doc).

NB – Medication, eventually, after weeks and weeks of unashamedly crying on the phone, many, many times, to my surgery begging for help, was so high at one point it was the pharmacist who advised I was legally not allowed to drive, if I actually was. And somewhere in the mix either surgery or pharmacy advised should anymore than prescribed be taken, I’d likely overdose – lovely. The surgery, to be fair, were good in increasing meds to help get pain under control, before what was thought was physio would take place. Only it took so long to reach that point.

Anyway, despite the paramedics visit, a couple of days later pain management and improvement remained poor and despite huge discomfort in getting into a car, I told my husband to get me to A&E. Once there, barely able to walk, the receptionist instructed my husband to get a wheelchair. It was an early Saturday morning and thankfully I was seen pretty quickly. The first nurse looked at my medical notes and slid the pile of medication I’d brought with me back to me. ‘Your notes say pain management must be dealt with by the surgery, we can’t do anything,’ she said.

‘That will be Monday, I can’t wait that long,’ I said, barely able to believe my ears.

She barely flinched. ‘What do you want us to do?’

‘Help me.’

She got up and told me to wait outside.

After a further wait a Doctor sauntered along and instructed me to follow. She kept looking back, frowning and watching me limping along. Once more I relayed the past weeks and weeks of pain etc. She finally said she would call the spine Doc and made to leave the room, instructing me to do so to.

‘Sit there,’ she said, pointing to a hard, plastic chair. ‘I can see you are walking badly.’

I almost wept. Here was the first Doctor to see me and acknowledge the problem.

Spine Doc arrived, really nice man. Told me he couldn’t change my meds as they were already so high, told me to sleep on the floor, made suggestions to my meds, and advised my case would be reviewed on the Monday. Sent me home. I began sleeping on the floor that night and remained this way for another couple of weeks.

So much has happened since then, case was reviewed and hospital appt booked.

‘How is your pain now?’ the consultant said.

‘Good now my medication is sorted.’

‘That’s good. I can’t do, won’t do anything for you, start exercising and strengthen core. Physio, yoga, pilates, plank. If you feel you need to be referred back, you can do so.’

That’s all well and good, but there are some yoga poses that are really not going to help.

At my first NHS physio session (as mentioned almost 10 weeks on from early June). The first questions went like this.

‘What are you expectations?’

‘I want to get better, to get back to my old life.’

A nod. ‘And what makes the pain worse?’

‘Not taking the medication.’

After observing my mobility, the outcome was, we do not do physio here and only send on for epidural steroid injections. I came home dismayed and distraught as all along all I’ve wanted was some gentle physio to help me begin to recover, and thought this was what was going to happen at that appt. I called the surgery to discuss with a GP. Receptionist said this was a routine appt and I’d have a phone call on 7th Sept. When pushed she said, ‘I can’t give what we don’t have, plus we’ve a public holiday coming up.’

OK, that’s almost 2 weeks away. I explained why I wanted to speak to the GP, she still would not budge. She then offered physio at the surgery. 1st Sept, and it would be a call to determine if face to face was needed. I suggested a call would not help. She said she would add a note for the physio to decide. I ended the call and sent what amounts to a begging letter to the surgery, via their online site. I’ll also add here that on a previous occasion when calling for help and apologising for doing so, I was told that if I don’t call they think all is fine, so best to call.

I’ve lost every ounce of fight I have. What gains made with pain management have gone since my failed physio appt on Friday – bearing in mind the physio had me twist and bend and lifted my leg until I cried out.

Generally not one to cry easily, often perceived as the tough one, I hover between holding back and sobbing and or weeping. Every day I put on a happy face and keep it there until in my own home where the façade can fall. Sure there are good days, but they are so few, and they have to be planned.

I fully understand COVID has caused huge problems within the NHS, but when I do see or speak to somebody, apart from Tom at the surgery who ends each call with ‘Ok, my friend,’ I feel like a number, no longer a person, and that makes me sad.

Many will argue, well it’s just your back, what about all those people with far more sever problems? And I say yes, I agree, and I’m sure they too feel so alone too.

The thought of never seeing a GP again and only using phone calls and maybe video calls dismays me. Physically seeing a person can say so much without uttering a single word. Local Surgery’s are inundated with work, yet they are hugely understaffed, both medical and non-medical. Is it not time to provide better funding?

See your GP, don’t call paramedics or go to A&E, we’re told. Well yeah, sure we will, if they have capacity, let alone available after normal working hours. It’s a vicious circle, and doesn’t help me feel any less alone.

So where am I now? Sitting at my desk, dosed up, wondering if I will ever, ever get better. Oh dear, I forgot to mention, a few weeks ago my surgery suggested blood tests. Great ESR levels are high, another MRI needed and . . . well who knows.

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