So this morning I had an orthopaedics appointment to get the results of my MR Arthrogram. I had this done on my shoulder because I’ve dislocated it so many times they wanted to see if there’s any structural damage in it. I found out I’ve torn cartilage and ligaments in it and am going to need surgery on it. This scares the complete shite out of me. Mainly because they’ve said that they don’t think a nerve block is possible on my shoulder because it will paralyse my diaphragm into the bargain. So I’m going to need a general anesthetic. They refused point blank to do my hip under GA because of my screwy chest and made me go through a spinal for both of them. So this is not a piece of good news. And the asthma nurses at the hospital don’t think my consultant is going to let them do a GA. I’m a bit freaked out to be honest. It really feels like just when things are starting to go well for me, that something gets thrown at me to make things difficult again. I know that the saying is only the strongest people get the biggest battles, but right now I don’t want another battle. I don’t want to have to be strong. I want to go to uni in September and not have to worry about this op and having to take a chunk of time out to recover.
I’ve been really busy this week, and I think I forget that I can’t just keep going and keep going and nothing will happen. This past week has just been manic for me and it’s actually wrecked me.
I was meant to be going to the hospital for my MR Arthrogram on my shoulder on Monday. Due to my latex allergy they have to have me on the first slot in the afternoon and have the room deep cleaned beforehand. I had rang them when the appointment arrived in the post because I knew that it wasn’t the first slot, so they rebooked it and booked a deep clean. This was about 5 weeks ago. I rang them about a week before the scan to double check they had booked a deep clean and got told that it was definitely booked and sorted. Arrive for my scan, gets to half an hour past my scan time and I’m starting to get a bit miffed. One of the radiologists comes out and brings me round to Interventional Radiology (IR) and tells me on the way that it wasn’t booked for a deep clean but they were trying to get a hold of the team to do it. Of course I decided I was annoyed at this and was quite possibly giving off the angry irish impression. I collared the radiologist who I know quite well cause she puts all the PICC lines in and is quite senior and told her how annoyed I was. I was due in on the Wednesday to have my new PICC line put in so Sharon managed to work it that they did my Arthrogram and PICC line on the Wednesday at the same time. In some ways it was a good thing, but it scared the complete crap out of me. Normally I deal really well with stuff like that, but the arthrogram was a new thing for me. I’d never had one and I didn’t like the idea of a needle in my joint. Cookie has had a few of them now though so she was able to tell me what would happen and I’d seen her having hers done so knew what to expect. Still scary tho. So it all got done on Wednesday. Unfortunately they had to inject quite a bit more dye into my joint than normal because they kept missing the place they wanted to put it in, so all day Wednesday and a good part of Thursday I kept dislocating my shoulder. It wasn’t very pleasant.
So then I went up to Edinburgh on Friday to stay with Dad and Irene for a few days before they go to Cambodia. I needed to make peace with dad because we’d had a big argument about a month ago and we hadn’t really left things on the best note and I don’t like doing that. I had a good weekend but it really did knacker me. I’m used to being able to rest in between busy days and allow my body time to recover but I literally didn’t stop for over a week and it kinda came to a head today when Cookie basically put me on house arrest and informed me I was not going to Salford to see my friend in hospital, that I was going home, having a neb and going to bed. Apparently I looked like a zombie and sounded like Wheezy from Toy Story
As brittle asthmatics, or even for many people suffering from chronic illness, every task or outing we do takes more effort than most people. We have to make sure we plan our day with time to neb. It’s difficult when you want to be a normal 23 year old to allow yourself to stop. It’s something I’ve been struggling with quite a bit lately. I want to be able to keep up with those around me and to be able to do busy weeks like last week and not struggle massively after. I think it’s one of the biggest causes of depression in spoonies. We want to be normal. We look normal enough, and get told often enough that “you don’t look sick”, so why can’t we be normal? Why does everything we do need a military prepared operation to get sorted. Why can’t we just decide we want to go somewhere, jump in the car and go? It takes a lot physically when you’re poorly. It’s constantly hard to breathe, then you’ve got everything that goes along with it. Steroids have caused so many problems on top of asthma for me, and that’s been harder to deal with in a lot of ways than asthma. The whole bilateral hip replacement saga, diabetes, the adrenal insufficency, osteoporosis, diabetic retinopathy and weight gain. Asthma doesn’t just affect your breathing. And that’s what so many people struggle to get their heads around so much. But we want to be normal as much as you see us as normal. So i’m doing very little for a few days and recovering from all the nuttiness.
I will be able to go to uni in Sept and not end up a mess. Honest.
Well I was meant to be seeing Dr N this morning. At the minute I’ve got a chest infection, and am feeling a bit rubbish. Last night was the first night I got more than about an hours sleep and had to get up at 8 o’clock this morning to get to clinic on time. I was expecting to see my consultant and get a couple of things sorted. I needed a plan drawn up for when I show up in A&E. Of the treatment I was to receive. Also to find out whether or not I’m staying on Bupivicaine nebulisers. So far they seem to be working, but at the minute I’m not able to take them while I’m on antibiotics. Because I can’t eat or drink for 2 hours after my nebs, I can’t have them. Increasing my steroids and having a sore throat means I’m drinking a lot more. And then having an infection aswell is making me drink a lot aswell. So it’s just not feasible. So they’re happy for me to restart them when I’m better.
But Dr N wasn’t in, and I ended up seeing a reg. Bearing in mind it’s August, the registrars rotated yesterday so it was a registrar that only started yesterday. He didn’t know how to sign into the computer. He had never read my notes. He didn’t know a thing about me. When I came in, he went to use alcohol hand gel. I warned him I’m very allergic to it and he ignored me. I started wheezing something shocking. He panicked and got the consultant in. I told them to cotton on, that I only needed a few nebs and I’d be fine. That as usual nobody had listened to me. So I had my neb and left. I went via the physios and managed to sort my hydrotherapy referral out, so I’m just waiting on an appointment for that now.
So yea, I got out of bed, wasted £10 on taxi fare that I could really have done with not spending and ended up feeling like shit for reasons that could’ve been avoided. Not impressed. So until the next time I splatt, or in 3 months when I see him in clinic, I won’t see him again.