-08/07/2019-

today l had an appointment at a private hospital. I didn’t get the outcome that we were expecting. I was excited for this appointment and had been since I received the appointment letter. Basically I’m unsuitable for surgery (the surgeon told me he personally wouldn’t feel comfortable doing it) as my disc degeneration, blockages, stenosis, and nerve damage are so bad. I’m going to be getting another opinion from the surgeon I initially spoke to on the phone when I was first contacted, a couple of months ago, as I was under the impression from him that he would be willing to do the fusion. The other option which today’s surgeon suggested and wants me to start asap, is to start a TWO YEAR physio plan. This isn’t even to reduce pain, this is to correct my jerky movements/make them more fluid. I’m sorry, but I can’t put my own fucking shoes on, so I’m interested to know how he thinks I’ll be able to do physio. He said that the nerve pain in my leg would affect the fusion, and that leg nerve pain usually gets better on its own after a few years...not if they’re fucking damaged my friend, and it’s been over two years already. That’s now two more years I am going to be unable to work. I feel destroyed, heartbroken, disappointed, deflated, frustrated, hopeless. This isn’t what I wanted. This isn’t what I expected💔

I’m just glad I have the best boyfriend, mother in law, my couple of amazing online friends, & 2 or 3 irl friends. You guys keep me going, literally. How I’m going to get through these next two or so years I do not know, but I’m glad that you’re there with me on this awful journey. I’m grateful & sorry.

-30/04/19-

surgery happened on tuesday, i am in agony.

•UPDATE•18/3/19•

Today I had my PIP assessment, and I think it went well. The man was very kind, explained he was a paramedic and had to stop due to back problems. So he understood me somewhat, which was nice. He could see how much pain I was in, and didn’t even make me try to do any of the stretching or squatting. I could barely stand on my own!! I couldn’t be more grateful for Bee coming with me and supporting me. I was told that it’ll be 4-6 weeks until I hear back, if it’s denied then I’ll have to appeal it, which would drag it out even longer and give me WAAAAAY more anxiety than I need. Unfortunately I’ve had to raise the target a little, and that makes me feel awful to do!! I didn’t think the process was this long, I applied about five/six weeks ago! I’m ordering my next lot of mobility aids this or next week, so at least I’ll be a bit more comfortable.

•UPDATE•28/2/19•

On Monday I waited five hours for an ambulance to take me to hospital, as my bladder had given way again. We were told on the phone i would be a priority due to it being spinal, got in the ambulance and were told that it wasn’t a priority. Waited two hours to be given an ID tag. Moved about from one ward to another, only being allowed to go pee 12 hours after being in there. Had an X-ray, and mri done, to be told I have a hell of a lot of scar tissue on my nerve roots (from previous surgery). And that he suggested physio, as a clean up job of the failed surgery would be too dangerous. Because of my mental state, I was told psychiatric people would come to the ward to see me before I left. No one came, I was just handed a piece of paper with some numbers on... You KNOW when there’s something wrong with you, something that requires more than just physio. We went home. Deflated, my mental state at its worst because STILL no one was listening to me. I honestly thought I was going to take my life that night, I was ready to. I had a consultant orthopaedic surgeon appointment booked today, that had been booked 3/4 months ago. Go in, he looks at my mri, asks me to do a couple of movements etc. I have poor/no extension of my spine, bending forward or back. The 2017 surgery was for one disc, I now have six discs affected by herniations, bulging & deteriorations. I basically got more information from this man in one meeting, than I did in two years from various specialists/surgeons/gps. He said that my first surgery failed, so to go in and remove the scar tissue would be VERY risky especially as I’m hypermobile. So plan is to have the first surgery. Which is ten facet joint injections and ten nerve root blocking injections. Being knocked out for that, if after a month there’s no/not much improvement. That’s when he wants to go IN again, try and remove scar tissue, try to reconstruct some discs from hip bone, and then just bolt the lot together pretty much. He’s told me to start swimming, and that I shouldn’t be afraid of my strong pain relief. ‘It doesn’t matter if you rattle from all the meds, you need to be somewhat pain free and try to move a little more so you aren’t seized up 24/7’. I am so relieved right now. He listened to me, the first professional to actually listen to me in two years! He has a plan, and a back up plan. That’s more than anyone else has done for me this whole time. Hopefully won’t have to wait long for the day surgery. I feel so much more optimistic about things right now, I’m overwhelmed that he listened and listened properly. Told me all of his concerns with my situation, pros and cons of each procedure, shocked at the state I’m in for my age, suggestions for small lifestyle changes etc. I just can’t believe I’ve finally been listened to and taken seriously, and that there’s a plan of action now. The injections don’t have a 100% chance of working which would mean some pain would persist, and the surgery has a 50-70% success rate, and would mean some pain would remain if it was successful. Im also seeking help for my mental state, as there’s no chance I can continue to live this way with no help. Mental health medication is what caused this whole problem, so I’m finally willing to give it another go. I don’t really find talking therapy to help me, but I’ve registered interest with a group and will attend my first meeting next week to see if it’s something I feel comfortable with. But I’m willing to try medication again, if it’ll help me. So glad to be getting somewhere.

Money raised will go towards my various meds, travel to and from all appointments, household bills, general living, a suitable wheelchair, a suitable good non slip walking stick, shower stool, perching stool, toilet frame etc

In January 2017, I was prescribed Quetiapine for my schizophrenia. Around one day after taking the medicine, I started experiencing blackouts. The first time was in a pub with my friend Jodi, hadn’t even had a drink. As I was standing at the bar waiting to order, my hearing suddenly went, and my knees started feeling funny. I rushed back to the table where Jodi was, and just collapsed into the chair. Blackout and a seizure. Woke up super sweaty and confused but felt more or less okay.

That same evening when I was back home, I was in my bedroom rolling a joint. As I went to go down the stairs, I had another blackout, and woke up at the bottom of the stairs. Woke up, sweaty, more or less okay. I couldn’t walk for some reason so crawled into the kitchen. Then blacked out again as I was leaning against the cupboards. Again woke up, more or less okay and went and had my joint.

The following morning, I KNEW something was wrong with my back as the pain was nothing I’d experienced before.

I took a trip to A&E, after an X-ray I was told I just had a ‘straight spine’, given a shot of Valium to the butt and was sent on my way. That was a Sunday. I went back to work as normal from Tuesday to Saturday. That week my pain was getting worse, and I was developing a limp and tingling in my right leg. By Saturday, I had woken up that morning as was paralysed from the waist down. That was the scariest thing I’d experienced up until then.

I was taken to hospital via ambulance, and was given an MRI straight away. I was at that point told I had broken my spine. I then received front and back passage examinations. Which is never fun. I was then told I’d be taken for emergency spinal surgery. I was so full of painkillers, which I think is never a good time to tell someone the risks or a surgery. I wish it had been written down for me. I just couldn’t take anything into my brain, it was in complete and utter overload.

I remember being prepared for surgery, laying on the trolley, silently crying. Just tears running down by my ears. Trying to keep it together, but failing somewhat. I was terrified.

I woke up in recovery a few hours later, in insane amounts of pain. Some muscle had been removed, they shaved some spine down and did what they had to do. Morphine was constantly being topped up as I was struggling to even talk through the pain. I was then taken to the major trauma ward, and given my own room. Which was definitely a positive! I wasn’t allowed to stand or get out of bed until the following day. This is when I started losing faith in the NHS, well at least some of the people that work for the NHS.

That next morning. The nurse came to my room to see if I could stand. And I could, so I wanted to go for a wee. The nurse had gone to the next patient, but I had dropped my blanket on the floor trying to wrap it round me, and I could in no way bend down due to all the staples in me. I pressed the buzzer for assistance. And was greeted with ‘I need to check on the other patients, I’ll be back in 20 mins to pick it up for you’. That stunned me in all honesty., all she had to do was pick it up!

By this point I hadn’t received any pain relief since I was in the recovery room, and was in searing pain. I pressed the buzzer again asking when I would be getting painkillers, and was again told ‘you have to wait for the doctor like everyone else’ now at this point I was crying. Crying in pain and frustration as I felt I wasn’t being cared for properly. That’s when I heard the nurse go back into the corridor and say to a colleague ‘I could have just smacked that girl in the head’. About three hours later, I was told I would be discharged THAT DAY. No. Not happening. I refused to leave. It was less than 24 hours since the surgery and they were already trying to kick me out. I protested, said I lived on the third floor of a house, that had no lift, I had no family to help me and felt I’d have been better in the hospital.

The next day comes, and I’ve only been given one dosage of pain relief. Which in no way helped. Obviously. Pain relief has to be round the clock for it to work properly.

I had just had enough by this point and asked if i could leave as I felt I’d be able to keep on top of medications etc better at home, where I could set alarms and do it properly. So I waited for a few hours for my medications etc to be got together from the pharmacist. And I was picked up and taken home.

Recovery was ROUGH. I couldn’t lay on my back at all, had to be on my right side. Which was so bruised and tender from that being the only position I could lay in. I was off my face on OxyContin for most of it, but I was on top of the pain. I had lost a lot of weight, almost two stone in the first month.

I started feeling much better initially. I could walk and do things without pain, but I could only walk small distances. But that was better than before so I was happy.

Now when I was in hospital, I was told that physiotherapists would come to my house and help me with stretches etc for getting better. That never happened. When I contacted them, they told me they’d turn up on the arranged date. They never did.

It’s now February 2019. I have still not received any physio therapy. I recently had an MRI, and was told even more recently that it’s fractured in four places at the bottom and theres four herniated discs, and they don’t know how long it’s been that way. Since mid 2017 I’ve been to the gp constantly, saying something was not right. But every time getting palmed off with more OxyContin. I don’t even even want to imagine the state my kidneys are in from the meds!

I have since moved from Cottingham to near Dover, which means changing gp. I registered with a new gp, but was told I can’t get any meds or treatment or referrals until my records had been transferred. My previous gp tried faxing them over but it all just came out solid black ink. Turns out some sort of courier service had to go pick up my physical records from cottingham, and deliver them to my new gp. Which took a month...

I have two options as far as I know. Surgery, or leave it. I had injections in my spine December 2017, which did not help in any way, but just traumatised me as the procedure was horrid. But yeah, I can either have the surgery, with a paralysis rate of 60-70%. Or I can do nothing, which means pain levels would increase, and mobility levels would decrease. With the possibility that I could wake up paralysed again. There’s only a 30-40% chance of me coming out of that operating room, and being able to walk.

I am terrified. I have genuinely never been so scared in my life.

I didn’t think that at age 26, I’d have broken my spine and had a stroke, a blood clot on the lung and a plethora of other health issues, and would have to consider the rest of my life possibly being in a wheelchair. Now I know it’s not the end of the world, I’d still be alive. But I’m fed up of people saying that to me, I know I’d be alive, but I wouldn’t be able to do most of the things I love doing, which would make me not feel like me anymore.

I’d have to give up my job, wouldn’t be able to go exploring through cliffs and woods. I have to think realistic. My job does make my back worse, which in itself and my situation, I should do, and go on disability benefit. But I also don’t want to have to deal with having to give up work at 26 because I’d be disabled. I’m definitely finding it hard to accept what’s happening, I get told off by my other half for doing things I shouldn’t. Like lifting stuff etc. But it’s for my own good that he tells me. It’s just so hard to get told off like a naughty child when I’ve been an independent adult for many years.

My mental health is taking a battering from all of it. Not feeling worthy of treatment as I’ve been left for so long with no check ups, no doctor would listen that I knew something was wrong, miserable that I wasn’t getting referred. I’m trying not to think of the future to be honest. Because I don’t want to have to think of how much an inconvenience I’ll become if I have a chair and no doubt more appointments.

I don’t want to be told ‘at least you have your health and are alive’. I want someone to sit and cry with me about how shit this situation is. I want my best friend. I want my sister.

I’m so lost and confused and overwhelmed.

I recently asked my boss if i could have an extra day off in the week so that i can rest my spine as obviously the tattooing stance is not good for me. I was met with ‘just come back after the surgery has been successful’. I was asked if i had anything booked in that week, which i did, and i was allowed to complete those. i had previously asked if some adjustments could be made for me within the shop, as i worked upstairs. And was denied. Apparently they also dont want a wheelchair in the shop from what ive been told. i then asked if i could help on the front desk, unpaid, just to keep me out of the house so my MH doesnt spiral. Again, no. I was then informed that due to my condition, im not covered on the shops insurance. But they hired me knowing i have a condition... i was told i could return after the spinal fusion recovery, but now that im trying to plan for the future, im being blanked. Im now in too much pain to be able to even go and work somewhere else!

The career that i have wanted since the age of 11, has been taken from me. And this has destroyed me, im losing my identity.

Ineedsomebackbone is my instagram

If you made it this far, thank you for taking the time to read my experiences, and thank you in advance to any of you who do help out <3

H