On the day of the surgery

Trigger warnings –  trypanophobia (needles, cannulas, surgery) & emetophobia (vomit)
(But to be fair, what else would you expect from a surgery-themed blog post?

The surgery was taking place in a hospital not far from my home. I had to be on the ward at the hospital by 7 AM. Being the usual anxious person I am, we got the bus very early and arrived at 6:30. This cause a slight problem because inside hospital was ridiculously hot, (Why on earth did I end up having elective surgery on the one day that there was a heatwave?!) and there wasn’t really anywhere else to wait, or so we thought. There’s actually a lovely little community garden provided by the friends of hospital which was a nice place to wait while I was busy panicking about the upcoming surgery. There was nobody else around so I could just sit and panic quietly with my partner.

The hospital garden

The hospital garden

The day was beautifully sunny and the weather did ease my anxiety a little.

Dead on 7AM the ward opened and I was taken into the seating area and instructed to wait. I was only there for maybe 5 min. before I was called into the preparation ward.

WP_20150630_06_57_40_Pro

My very own little waiting station!

I was told I was first in the lists however this can change depending on the order the surgeons want to do the surgeries in, but my preoperative checks were done quickly including diabetes checks, blood pressure and heart rate and other things such as pregnancy tests. They all came back fine and I’ll talk to settle in for the wait. Thankfully the area I was waiting in was actually quite nice; there was a TV with Freeview and a comfy chair for me to wait in.

I was visited by the doctor who had referred me for the surgery in Fracture Clinic (still no sign of my consultant!!) and an anaesthetist. I expressed my concerns about being awake for the surgery due to my fear of needles (or anything piercing my skin for that matter) am I worried the local anaesthetics may not work me due to my HMS. Beneath that is reassured me that he could sedate me enough that I wouldn’t notice what was going on, and that he would test the anaesthetic effect before anybody was allowed to go near me with anything sharp. I admit I did panic quite badly, and how to a bit of a cry, but I think that’s understandable under the circumstances.

WP_20150630_14_50_27_Pro

Hospital socks!

I was told to change into a gown, and was given some snazzy socks (with tote grips on both the tops and the bottoms) to wear to keep my feet warm. The anaesthetist begged me to sit on my hands to keep them warm because I have dreadful circulation. I did this and wiggled my hands regularly, and to my surprise some veins actually did show up.

I think I was taken in for surgery at about 9:30AM, leaving my partner behind. You actually walk through from the prep ward to the anaesthetic area and are put on a reclining bed. (For the procedure, your arm needs to be in a dropped position) On this short walk through very cold corridor, all my veins promptly disappeared. The anaesthetist was very nice, he was there with a trainee, and he really tried hard to get everything done first time. Unfortunately this didn’t happen, my cannula went in incorrectly the first time which is horrifically painful, but the second time round it went in fine. I was quite surprised that I was actually okay with the cannula because it’s flexible, so I wasn’t worried about it breaking. I was given something to make me drowsy, I’m assuming it was a sedative. After this point everything becomes a little bit fuzzy(!)

I was given the spinal nerve block which is a local anaesthetic affecting vertebrae in your neck. It consists of several injections to various places within your neck however they put one needle in and then move it around while inside your neck, assisted by ultrasound to see the tissues. This is one of the weirdest compliment I’ve ever had. The anaesthetist said “You’ve got really beautiful tissues, it’s fairly common in patients with EDS, but yours have a real flow.” Odd right?!

Anyway, the nerve block was injected and my hand started to feel tingly, then it felt heavy, then the sedatives really started kicking in. I should point out I’ve never been drunk in my life but I’m fairly certain that’s what it feels like. The whole world was moving slowly and my body was less responsive, my voice sounded different and they started making fun of me because I became really Bristolian. The anaesthetist stood to my side and told me to give him a high five with my right hand (the non-anaesthetised one) which I could do. He then told me to repeat this with my left hand. That was actually impossible. I could just about wiggle my fingers, but that was all.

They waited maybe 5 min. for the nerve block to take effect fully, by which point in time I was pretty damn doped. This is where my consultant showed up – I have never seen him before in my life – he showed up and said “Hi I’m Mr. *name redacted* and will consultant but I’m sure we’ve met before”. I responded “I’ve never seen you before, I’ve always seen junior doctors, I’ve been wondering if you even existed.” He chuckled at me, I hoped he thought it was funny because otherwise I could’ve ended up with some serious scars in stupid places. He went to go set up and the nice anaesthetist came back and wheeled me into the operating theatre.

All the theatres at this hospital were recently refurbished, and I have to admit they were actually very nice. I expected them to be really scary that they were just rooms. There was a lot of people and a lot of equipment, but the sedative meant I didn’t really register any of it at the time. I had oxygen mask put on me, and they painted my shoulder to my elbow with iodine to disinfect it for surgery. This felt really bizarre because I could see it happening but couldn’t feel it. As I have stated I didn’t want to see the surgery happening, they took my glasses off me and put up a sheet to obscure my vision. That’s the last thing I remember.

I came to on the way to recovery at about 11:30AM, and was only in there for maybe 5 min. until I was awake and talking, then I was moved to the orthopedics ward. When I got the ward they started doing observations on me every half hour, and requested that I drink things and try to relax. Trying to coordinate your hands when you’ve been sedated is very very tricky and the nurses had to help me drink for the first half hour or so. At about 1 PM lunch arrived – unfortunately nobody had told anybody that I was supposed to be there for lunch so I was given cheese sandwiches and ice cream. This was fine but a bit of an odd combination.

I have to admit these first four hours after surgery were magical, I was in absolutely no pain for the first time in about 15 years. Looking back at this is quite depressing, because I didn’t realize how huge a part of my life pain has become, but I’m glad I did get to experience it even if it’s just for a short time.

The physiotherapist visited me on the ward and showed me how to put on this fancy immobilizing sling and what I was allowed to do as far as exercise was concerned (not a lot!!). Technically after this (and having made a trip to the bathroom, because them’s the rules with surgeries!) I should have been allowed to go home. One of the nurses phoned my partner at about 2 PM to tell him that I would shortly be able to be released. He spent the rest of this saga sat next to my bed, being very patient but very bored and quite hungry.

Sling back

Sling back

Sling front

Sling front

This is where the problems started…

My pulse rate was registering 112 BPM. This is technically tachycardic. The nurse wasn’t happy that my pulse rate wasn’t lowering even several hours after surgery so she alerted the doctor on site at about 4 PM.

My pulse rate is high naturally, I’m not sure if this is an HMS thing or fibromyalgia thing, or simply an anxiety thing but my resting pulse rate is usually about 85-90. For those who don’t know about pulse rates this is pretty damn high for a young person, especially since my blood pressure is neither high nor low.

I was pleased that they were being cautious however I was also really bored and wants to get home before the real pain kicked in (or rather the real painkillers ran out). The doctor came and checked me over at about 5:30PM and decided he wanted to do blood tests. This is tricky because most of the back of my right hand was taken up from bruises from the cannula(s) and my left hand was now in a sling. My elbows are pretty damn bad for finding veins as they lie very deep. He decided to take the blood from a vein going down the side of my wrist with my thumb. It turns out this is a really painful place have blood drawn from and it bruises like hell (photos will be provided!!).

There was a small problem here because the on-site testing had closed for the night so my sample had to be sent elsewhere. This seems a little bit stupid but I appreciate that this hospital tends to be mostly for outpatients or chronic long-term patients so I can see why the cost-cutting measure has been undertaken. Either way I was sat there waiting for my blood sample to be analysed and to be cleared to leave until somewhere around 10 PM. At this point I started to get a temperature, and the nurse who was taking my observations said that she was a bit concerned about this. Thankfully the doctor came along and signed the discharge forms before he could see the temperature, and I simply didn’t mention it.
All this time I was provided with ibuprofen & paracetamol, however I believe the painkillers used during surgery had not fully worn off yet. The pain started to rise around 11 PM once I got a taxi home. I’ve been given tramadol, ibuprofen and paracetamol as my painkillers for my aftercare. I had stated that tramadol gives me extreme nausea and vomiting, so I was also given ondansetron which is a strong anti-emetic.

Because we arrived home really late, I didn’t even eat dinner. We scaffolded up the bed with pillows and I fell asleep pretty promptly from exhaustion. As such I didn’t get chance to take the painkillers. I woke up early the next day, at about 7 AM and took ibuprofen & paracetamol, for the first few doses to assess how bad the pain actually was. Sleeping proved to make the pain worse so I decided to take tramadol at night. This was a really bad idea because I don’t know if any of you have ever tried to balance on hypermobile feet and knees with one arm in a sling while trying to throw up while high on tramadol but is pretty difficult! This is even with the ondansetron, rather than preventing the emetic effect it simply delayed by four hours.

I was promised a phone call from the ward to discuss pain relief “a few days after surgery”. I had assumed this would be 2 to 3 days after surgery. I waited for this rather than bothering my GP or the emergency care provision. This was quite stupid as the call actually happened 10 days post-surgery. In the end I yielded four days after surgery and went to the emergency clinic in the city centre to discuss pain medication, and they suggested that the only viable medication for me would be over the counter codeine. This has kind of worked, but not brilliantly and definitely didn’t work very well for the first few days. I was taking an awful lot of medication as you can see from the recycling pile that was accruing in him wastepaper basket. (Even with all the pain, I still recycled!)

WP_20150716_13_21_53_Pro

I have my stitches removed one week after surgery, and my sling removed four weeks after surgery. I ended up signed off for four weeks, however I am still not back on campus working due to an error in the dictation software I need as I cannot type with both hands still. This has been driving me a little bit insane, because I have had to physically restrict what I do in my everyday life generally I define myself quite a lot by the job I do. Not being up to do this has made me feel a bit of a failure – even though I expected it. This was a bit of a surprise to me.

I think that’s all I’m going to tell you all tonight, I’ve been recording everything with photos – so there will be scars and bruises in the next post, but there’s nothing too gross – it has healed well, but I have a highly limited range of movement and lots of pain. Oh, and forgive spelling errors – blame Dragon Dictate!

Sleepy time now,

Hypermobile (although less so now) Hobbit!!
xx

Advertisements

Dear Other Normal Human Beings

This is a beautifully written blog, about why the NHS is marvellous.

Dear Other Normal Human Beings.

Please give it a read, and fight with us to protect the amazing services and people in the NHS.

I know that without the treatment I have had from the NHS, I would be unable to work because of pain levels & I never would have managed to get my degree.

I spent two years fighting severe anxiety and depression. Without the NHS I probably would not have made it through.

I can’t explain how important this is.

Best wishes,

Your politically-anxious and very scared,

HypermobileHobbit.

P.S. Forgive any odd formatting. I have a windows phone now, and the browser doesn’t like complicated websites. Will blog my surgery & recovery once I have the willpower.

MRI results!

I finally got an MRI two weeks ago. It was done at the medical school attached to the hospital, because the MRI dept were having some technical difficulties with their machine. It meant that instead of having nice nurses talking me through it all and chattering away merrily, I had two PhD students who mostly talked to my partner about his Physics degree, and who spoke in such mumbled tones through the microphone that I couldn’t understand a word they were saying! (I honestly don’t know which one it was talking really, and considering one was male and one was female, and they were from different continents, that’s saying something!!)

It was pretty OK, other than the fact they didn’t offer me a blanket to keep warm, didn’t explain what was going on, and had to re-scan three times (I think) because I moved. I moved because when you put a person with an injury in a painful position, they tend to move! Especially if they have cramp-inducing conditions such as HMS! Bad patient relations. They didn’t even tell me their names. Have they not heard of #hellomynameis? Silly people! This is what happens when non-patient-relation people are put with patients without supervision. I get that they’re students, but if I didn’t know what it was going to be like, if I was claustrophobic, if I had no idea why the machine keeps making quite scary alarm noises – then I’d have been terrified! They didn’t ask me at all if I was scared, and they knew it was my first time in an MRI machine. I wasn’t that impressed all told. The problem is, I can’t very well write to the PALS service because these guys aren’t hospital employees, and aren’t covered by it.

I got the results back on Tuesday. My GP said “We have a positive result.” Which I took to mean there was something there on the scan. She meant positive, like “good”. All my tendons are fine, no fractures, no cartilage damage, no membrane damage. Apparently there’s a small effusion (liquid pool) in my knee, but that’s totally normal and shows up on anyone. I did point out that the day they scanned, I hadn’t moved a lot in order to minimise discomfort in the scanner, so it didn’t hurt a lot that day anyway. So the verdict is… there’s nothing really wrong with my knee. (Or if there is something wrong, it’s soft tissue).

That’s not as comforting as it should be. It means I’m being sent back to physio *again* only this time, it’s with a new physio. One I will probably have to teach about HMS because they won’t have heard of it… even though I alerted the triage person to it when I called up for the referral. I’d rather there was something actually wrong almost, because then I would feel vindicated in the fact I have been totally unable to do pretty much anything for the past two months. I’ve been relying on the crutches so much I have bruises on my palms, damage to my back and shoulders and a fairly manky looking scab on my knuckle. Sometimes having a rare condition is an absolute pain in the ass. I get so tired of constantly having to explain it’s not like arthritis, it’s not “just being bendy” and it’s definitely not me faking it. I hope and pray that this physio magically turns out to be one of those awesome NHS employees that hide away in corners, diligently doing their job very well and hiding from all the ridiculous bureaucracy. If she’s like my first physio who did friction massages on  the tendons inside my shoulder. Yep, he popped my shoulder partially out of it’s socket, and rubbed the internal tendons with his thumb. It’s one of the most painful things I’d ever experienced, up until this knee injury.

I suppose I should be glad that my knee is fixable. I’m not going to be stuck this way forever. But then I was told there was a 6 week wait for physiotherapy, which made me want to just sit on the floor and cry. I was going to be left for 6 more weeks sat in this state, in pain and not really knowing why?! I was angry, frustrated and tired. And worse than all that, I knew that the injury was all my fault in the first place. I knew the weather was bad, I heard the lightning when I was leaving, and I didn’t turn back.

Thankfully, someone in the heavens seems to like me, and the physio called me up to “fill up her calendar”. My first appointment is tomorrow afternoon. She’d better not break me, else I’ll make her carry me home.

I’ve got a whole bunch of stuff to do in the morning, including picking up £25 of shopping centre vouchers I won off the City Council for completing a survey about my opinions on additional licensing for Houses of Multiple Occupancy. (Should landlords who buy up cheap houses and convert them into student lettings pay a premium rate of council tax, basically.) If I get a job, that money might get spent on fun things. If not, then it’ll get spent on food. If I do a lot, then my leg will hurt and she’ll see what the damage is! That’s my plan anyway. I’m not going to do anything excessive, just a small half hour walk to the train station. I’ll bus it back like a good disabled girl! I’ll even use my crutches to minimise the damage!

The house move was a success too. We’re almost completely unpacked. My partner, bless him, moved nearly everything by hand, with the aid of an awesome friend of ours.

Oh, and I modelled for a trainee hairdresser and now have a (and I quote) “Sexy swinging A-line bob”. I shall try to put up some photos later.

Indiana Jones and the Legs Crusade

Ha! Indiana Jones pun!

Doctor called, and she called rheumatology and osteology (I think?) and they both said they won’t see me on referral because I don’t fall into their nice definitions of what they can treat as a patient. (Grrr!!! Red tape!!!) Then she called the fracture clinic, and they said no. So she asked very nicely and they might have agreed, so she’s referring me for that. She’s also referring me for my very first MRI, which is exciting, so I had all the questions about if I’m made of metal or claustrophobic (neither, thanks!). It’s nice to make some progress, but the problem is both of these referrals have a rather long waiting list. Meanwhile I’m left in a LOT of pain, with little support from the NHS. I wasn’t even given crutches! Thankfully I have a pair lying around the house that I might try to use if walking is still too difficult by Monday.

The problem is, there is clearly something wrong with my leg. I am in a lot of pain, and if it wasn’t for my partner, I’d be living on stuff I could grab from the kitchen. I’d have definitely run out of milk and bread after 3 weeks, and there’s no way I can shop by myself. (For the first week, I couldn’t even do up my own shoes!!) There has to be a big shiny red button in-built into the NHS referral system labelled “Holy crap, I have no idea what is wrong with this person, so just let me send them to someone… ANYONE!!!!”

But… there isn’t. My lovely GP is forced to see me in pain and apologise profusely about how she can’t refer me. There’s no way she can refer me through the normal channels. Thankfully I’m stubborn enough and eloquent enough to convey how much pain I’m in, and she’s clever enough to wriggle the system a bit.

*This* is why I hate being on the “disabled border”. I’m able enough most of the time to be O.K. In pain, but able to function. I can dress myself, do my shopping, cook and even clean! As soon as my body refuses to behave, I’m stuck inside the house, unable to do basic household chores and unable to care for myself properly. I think that counts me as disabled?

I am probably going to have to pay to get to my MRI and the fracture clinic. I walked to the doctors (which took about 30 mins at my slow hobbly pace) because I can’t afford a taxi. If I’d been given a disabled bus card, I’d get free bus travel and fixed rate taxis.

I get little/no support from the government, and get absolutely hammered whenever I get injured. I can’t even sign off sick, because I can’t get a job to sign off sick from, because of my joints. But at the same time, I know that I’d not certify as being disabled because I’d probably be “fine” on the assessment day.

This is total and utter bollocks and is making me very frustrated.

Not much progress

It turns out that a GP can’t refer someone for a scan until 6 weeks after initial “injury” unless a “trauma” has occurred. It sucks that I’m basically being punished for being honest. I’ve got an appointment Weds morning now to be re-assessed and to see if I can be sent to the fracture clinic. She doesn’t think I have a fracture, but they will be able to give me a scan, so it’s sort of a way of bypassing the system.

Stupid thing is – surely there should be a big shiny red button that says “Bypass the system, there’s something seriously wrong here and this patient NEEDS HELP!?!?!” Sometimes it drives me mad that the NHS is so inflexible. But then again I suppose there are so many crap GP’s out there that these rules have to be in place to stop the wastage of money, resources and time.

On a scale of 1 to 10 of pain…

1 being “ouch, that’s mildly annoying” – think cutting your finger.
4 – normal cramp pain.
5 being “ouch, I think I’ll take some paracetamol” – more like headache pain.
7 being a toothache level pain (as in justifying codeine).
8 – Trapped nerve, needing zapain and sleep.
10 being “Oh dear god, I can’t think or feel anything else but the damned pain.”

…this is sitting consistently at a 8.5, rising to a 10 every single time I move.

As such, I don’t move. This could potentially be interesting as I have a job interview next Weds and I’ll have to walk 20 mins, to get an hour bus, to walk another 20 mins to get there…