CW: surgery, hospital, disability, recovery, physical rehab
This time 6 weeks ago I was settled on the ward in hospital after my op. It’s gone both quickly and slowly at the same time. I had 6 days in hospital immediately after the op because I had a couple of adrenal crises and then came home on a double oral dose of my steroids. After that, I don’t really remember an awful lot of the next month, partially because I’d had pretty major surgery and was recovering from anaesthetic and pretty drugged up on opioids. But also because my adrenal Insufficiency makes me feel quite foggy on a good day, let alone when I’ve got healing a joint going on in the background.
I felt sore from the operation but nothing like the pain I had after I dislocated my shoulder once and they hadn’t put it back in properly (for about a year!) I could keep on top of it with pain killers so that it still hurt but wasn’t the all consuming pain it was before. It was “normal” pain. It got a lot worse when I did things like getting dressed or getting in and out of bed. So I pretty much lived in my PJs and sat on the sofa for the first week I was home.
I’ve dislocated that shoulder enough and had to be careful with it for so long that doing things with one arm kind of became second nature to me beforehand. Even if you’re not using the shoulder itself, the muscles around it and your core muscles are regularly engaged to do things, including when you’re using your arm on the opposite side. I’m seriously glad I’d been going to a fitness class designed for people at risk of falls, because it had helped me build up some core strength beforehand. Otherwise I’d have been in trouble! The things I couldn’t do to start off with were tasks like opening doors, opening car doors, putting on my seatbelt, cutting up my own food, lifting “heavy” things. You don’t realise how much you use your shoulder/core muscles to do these things, even if I did them with my right hand. Eg opening the car door with my right hand still caused me a lot of pain in my injured, left shoulder. But I was prepared for those because of having dislocated it so many times. Some tasks meant I would automatically have someone with me so they could help eg going in the car. Others I could buy an aid eg a seatbelt tag so I could pull it over myself. But the one thing I couldn’t get an aid for and I didn’t want people helping me with was personal care, like pulling up my trousers and actually going to the toilet and cleaning up afterwards.
It shouldn’t have been a problem because the county council were supposed to have fitted my disabled bathroom with a Closomat toilet which washes and dries you. But like most council things, they never stick to their schedule and it got fitted a couple of weeks after my op. It was still useful, but would have been a lot more useful as soon as I’d come home! I already had a comfort height toilet installed , which is slightly higher than a normal toilet, and grab rails next to it, which made a massive difference. You need to use shoulder muscles a lot getting off the toilet!
Other aspects of personal care that were hard included brushing my teeth, putting on clothes, washing etc but I overcame these by getting an aid to squeeze toothpaste tube, buying big and baggy clothes and using wet wipes and a flannel and a bowl of water since I couldn’t get my wound wet for a month. I didn’t feel remotely clean for the whole time but showering wasn’t an option because of where my wound was, so it was a bit like having a sponge bath when I was in hospital. I got some absorbent cloths (my right hand got tired wringing out flannels)and a sponge with a handle on so I could reach bits where I couldn’t move my left arm enough. I managed to find some shower caps which washed my hair without water in about 3 minutes. These are a genius invention which one of my hospital friends on my ward told me about. I paid to have a hairdresser wash my hair once but these shower caps were a godsend! Again, still not the same as an actual wash, but better than nothing!
I bought some baggy nighties and wore those for the first few days because trousers were hard. Because I’m overweight, the last bit of pulling up trousers on the left is hard purely because there’s a bulge of body at my hip to get over which I couldn’t reach. I’d lost a bit of weight since my last dislocation so it was slightly easier (less flab) and I could almost do it if I tried really hard but my adrenal insufficiency would complain from the effort required so I tried to avoid it. Which is a problem when you have a hormone condition which makes you wee a lot! After a week or so I managed with tracksuit and pj bottoms. I just abandoned some things completely (and some I still can’t do) like putting on a bra, putting my prescribed cream for my psoriasis on and doing anything with my hair. If it didn’t *need* to be done, I didn’t do it for a couple of weeks. Which even included brushing my teeth for the first few days!
Other things were already in place for me because of my regular dislocations so I just relied on them more. One of my parents made all my meals for me and cut them up. They gave me my pain killers at the right times and made sure I was awake for my steroids. They set out my clothes and washing things and tidied up. I already have a lowered and narrow sink in my bathroom so I could reach it and try to wash my hands because normal sinks require too much leaning forward and reaching to get to the tap. I have lighter weight mugs and use a plate bowl and have water bottles where I hold a button to drink so that I could drink without spilling it everywhere while lying down. I have a sit to stand armchair which helps with getting up and down and a “sit-u-up” device under my pillows in my bed which raises your upper body up with a remote control. I already had a lot of different sized cushions I could use to prop my arm up on in bed and on the sofa and in the car.
I got told to avoid moving my arm anywhere beyond neutral and away from my body but across my body was fine. I wasn’t to try going up over my head unless I was doing physio. I had a lot of swelling in my arm and hand and the biggest, colourful bruises I’ve ever seen. My entire left boob was essentially a bruise at one point! I had to try to move my hand a lot to get the swelling down so had specific exercises to do, which were things like holding my left hand in my right hand and moving my right side gently to do things like moving it up and down and from side to side or pushing it away from my body, sliding it on a table. They were bloody exhausting which felt pathetic considering how basic they were. But you’ve got to get the joint moving to stop it from seizing up while also protecting it so you don’t damage the work the surgeon did.
The table slide exercises causes me a few problems because my wound kept bleeding. Nothing dramatic, but the scar runs from my collar bone down by chest under my arm pit – it looks like where you’d cut my arm off at the shoulder. Under my arm, there wasn’t enough room to get another staple in because of the angle so certain movements like getting dressed and table slides opened it back up again. You also can’t really get a dressing on under there because I couldn’t move my arm away from my body and the more it bled, the more I needed to change my clothes, which made it bleed more. I got the dressings changed and cleaned properly with gas and air as pain relief in fracture clinic once as part of my routine check up and staples removed, and another time at the GP with the nurse when it got worse again. In the end, I stopped doing the table slides and avoided getting dressed for a few days until it healed enough to stop opening up.
My surgeon had done a lot of preemptive/prophylactic infection control measures because getting any kind of infection is very bad with adrenal Insufficiency so we were super on the look out for any signs. One weekend, my temperature went up to 38.2 and I’d had more bleeding than normal the day before so we rang 111 (the helpline for when you need medical advice but you’re not dying enough for a&e/the ER and can’t get hold of your gp) who were really thorough and told me to go to a&e within the hour in case I had sepsis or a post op infection. A&e were a bit hit and miss in that I went from one medic thinking he was going to admit me as an inpatient because of my blood work showing slight infection, to being sent home without any treatment. The compromise was going home with oral antibiotics for a week to blast any infection which might be lurking. After all the efforts my surgeon went to, I wasn’t going to risk an infection.
One of the contributing factors to having the antibiotics was Hamish, my assistance dog in training. He’s learnt how to alert to my condition changing fast so I can do something to stop myself getting ill. Sometimes I just go and lie down or stop whatever it was I was doing, other times I take more steroids. In the days leading up to the trip to a&e, he’d been acting weird. If a dog hasn’t been trained to give a formal alert eg nudging you with their nose or paw, then they tell you something is off by acting strangely because they don’t know how to communicate it. One night he’d woken me up and I couldn’t understand why, but when I checked it was because my temperature had gone up by a degree. With the maybe/maybe not infection, I’d had my “something’s coming” feeling and he’d also been acting oddly, so we decided antibiotics would be the safe option.
Having Hamish, my assistance dog in training, was actually a god send. Ideally he’d have been more trained than he currently is, because my op got brought forward by a year. But he really stepped up to the job with what he could do. His alerts were actually really helpful and gave me good information as to whether I needed more steroids or not. It took the pressure off me constantly assessing things, and, even though he’s not 100% reliable, it freed up some of the space in my brain I’d usually spend scanning my symptoms so I could just focus on resting. If he wasn’t worried, I wasn’t. If he was acting oddly, I paid attention. During my recovery, he’s done lots of little alerts which has helped me gauge how fast to do my tapering but he’s also shown me when my temperature was going up and when I’ve been having a hypo. Neither of which he’s been trained for. He’s so clever! He also meant that I could get dressed and (after a month) have a shower without my mum hovering outside the room. If I needed help, I could tell him to “find Ernie” and off he trotted. For some reason, he’s currently rebelling against picking things up from the floor which he knows how to do. He’s just point blank refusing to do it. But he has been enjoying taking my socks off for me and is getting better at helping me take off cardigans and jumpers.
Once I’d resolved the bleeding under my arm, the actual recovery of my shoulder *touch wood* seems to be going smoothly. I had most of the clips/staples removed after 2 weeks and the ones under my arm left for another week and then removed. I had a follow up with my surgeon after 3 weeks where he x rayed it and said that the joint was solid and healing well. I was allowed to take my sling off at this point too, which was confusing because the hospital ward were adamant it had to be on for 6 weeks but I’m managing fine without it at home. I still wear it when I go out though because I want other people to see that it’s injured so that I don’t have anyone trying to “help” me by grabbing it and making me slip and fracture my pelvis (which is what happened before). I started physio 10 days after the op and seem to be making good progress there. I still have nowhere near normal movement and I find it hard doing normal things eg long sleeves, but everyone says I’m doing well. Sometimes it clunks or spasms in the same way it used to right before it would dislocate, which it obviously can’t do now, but it still freaks me out. It’ll take a while for my brain to correct itself because until now, the risk of dislocation meant adrenal crisis and potential death, so I’m obviously going to subconsciously get anxious when that happens for a while.
On paper, it looks like I’m not doing so well with my adrenal insufficiency because I’m still tapering from my stress dose, and the guidelines say I should’ve gone immediately to baseline within 48 hours of the op. That was never going to happen and I had a few setbacks anyway- 2 adrenal crises and a possible infection are reasons in themselves to be stress dosing. I also used Hamish as a way of working out when I could taper because while he was giving me 2 or 3 alerts every day, it would be stupid to taper. I’m viewing it as a success because even though I’m only half way through the taper, I haven’t felt like I’m dying and been falling asleep every 10 seconds like I have done in the past while tapering. I haven’t felt my “I might need hospital” feeling and I haven’t had to increase it again. Slow and steady wins the race and all that 😉
I was fortunate enough to have a month’s notice for surgery and already knew how to adapt to one armed living. Things like Christmas shopping and Christmas crafting I crammed into that month before and got everything set up so I could come home and function as much as I could and my mum took time off to help me. We had the added drama of dad (who’s my carer day to day) falling on ice and breaking his wrist, which effectively meant my carer needed a carer. I heavily relied on my mum to help me (thank you!) and I still need help now but I’m slowly managing to do more for myself, which is good because I’m stubborn and want to be as independent as I can!
Full recovery can take between 3-6 months and some people don’t get full motion back. I know I’ll take longer to heal than the average and I didn’t have full range of motion before so if I get any of that back it’s a bonus. I’m quietly confident that things are going ok at the moment – touch wood!
okthenwhatsnext 