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.

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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.

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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!)

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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

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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.

Medications

I just looked through a few of the statistics on my blog, and I stumbled across the list of search terms that people have clicked through to my blog from. There’s several that worry me.

There’s a lot of people it seems “googling” (Or having a Goog, as my best friend calls it) how to take medication. This is NOT SAFE. People on the internet are not medical professionals, and they do NOT know your medical history. Ask a qualified pharmacist, or your own personal doctor or GP. Especially with prescribed medications!! 

Medications, as wonderful as they may be, can potentially cause horrid side effects, or even kill you if you mess around with them. Take them AS DESCRIBED by your doctor, and ONLY that way. If you want to deviate from that, go make another appointment and ask for advice. DO NOT under any circumstances take medication prescribed for other people, and for the love of all that is holy, READ THE DAMNED LEAFLETS!!!!!! They’re there for a reason. Any time you get a new medication, talk to your doctor thoroughly about how and when you can take it, and if you are concerned, ask about side effects too. When you pick up the medication, read the enclosed leaflets (which should be provided with any meds) about side effects and dosages, and then still follow your doctors advice (unless your dosage and the normal one differ too much I suppose, mistakes to happen). High strength medications can have nasty side effects, especially the pain killers often thrown at those of us with chronic pain. I know that most of you won’t have chemistry degrees, so I’m not expecting reverse-engineered mechanisms of how to make the damned drug!!

Just know: 

  1. What it is for? This should be on the packet or info leaflet.
  2. How does it work? (roughly). You can normally get this from google.
  3. What is the dosage? Your doctor should tell you this.
  4. Is it addictive? (How long is it safe to take it for?) This will usually be on the packet/info leaflet.
  5. What are the side effects? These should also be on the packaging somewhere, along with risk factors.
  6. Is it safe to take with other medication? In the UK, your pharmacist should ask you if you have taken a medication before, and if you are on other medications before giving you the medicine. If you are unsure – bloody well ASK!!!!

Come on guys, it’s your bodies we’re talking about. LEARN ABOUT THE STUFF YOU ARE PUTTING IN IT!!! I’m not talking go all crazy and only have hand-reared organic chickens that were played Enya each night as they fell asleep. I just mean if you are going to take medications, be responsible. THINK before you take things – especially painkillers. Do you really need that codeine, or are you just taking it because you always do? Would paracetamol and a rest help? High-dose codeine based painkillers can actually make pain worse – try taking a break! Talk to your doctor for a medication review.

Above all, do NOT take dosage advice from non-medical professionals, and do not mix medications unless you are told that you can by YOUR medical professional. YOUR body is personal to YOU. Just because Dave in Santa Barbara can take the meds his way does not mean it is safe, or appropriate for you.

Please PLEASE, take medications properly. And PLEASE, I am asking you as a regular medication user, PLEASE ask your doctor if you are unsure about anything. That’s what they are there for. If they refuse to explain, then get a new doctor!!!! Like I always say, doctors provide a service, if they are failing to provide a service you deem to be sufficient – tell them to get stuffed! There’s plenty more out there!!

OK. Rant over, I promise the next blog will be about my pretty hair and shoes.

When one door closes…

… another one opens?

Well I’ve got novel new take on it. When one injury subsides a new one crops up!

I am just recovering from to pull tendons in my hip, and spent about two days being able to walk absolutely injury pain-free. (I suppose I should qualify that I had normal fibromyalgia pain and HMS pain, but the injury pain was gone). Then somehow magically, my calf started hurting just below my knee started hurting, and now the middle of the back of my thigh is hurting. Yes, I know, sounds a lot like a hamstring injury right? The only thing is but if I go to the doctors they will probably prescribe more painkillers and probably more rest, and I would also have to walk there. I know I should get it checked out but it’s hard to convince myself to move. If it still hurts tomorrow I will definitely call up for an appointment. Got to be able to walk in heels for a friend’s wedding soon! (My goal, not theirs – it’s not like “you must be this tall to watch us get married.”)

Relief!

I love my uni!! They’ve given me another week for my dissertation!! They are so damned good with my condition, I just want to scream it from the rooftops. They helped me organise my DSA (which gave me a support worker in labs, dictation software, a new computer, a netbook for lectures, and a load of useful things), gave me the option for a computer and extra time in my exams (which meant I also get my own room to ease the anxiety), and extensions when I need them, without lecturers rolling their eyes at me in frustration. They even found a counselling charity for me when I needed help.

I’ll say it, I love my university. I am proud to be at such a disabled-accessible institution (if we ignore the problems with the old science building being a bit less than wheelchair accessible) and I think I will be eternally grateful for how much this institution has done to form me into the kind of person I am today.