Living with a chronic illness – Hospital appointments

I’ve not written about my physical health for a while, but in the last week I’ve had 3 hospital appointments which was crazy! They’re like buses all come at the same time!

The first hospital appointment was Wednesday 16th Jan was my first physiotherapy appointment and it went really well. He gave me some exercises to do, which I’ve been doing most days. I know I need to do them everyday, but I’m feeling overwhelmed at the moment, so most days is better then non. He basically said that physio and insoles in my shoes will be something I need for the rest of my life because I am on the higher end of the scale for hyper-mobility, of which he said I score 9/9 which wasn’t really news to be. But I came away feeling happier, it seems like I will have continual care regarding physio, which isn’t something I’ve had before and its something I feel I will need for a while in order for me to make sure I’m doing my exercises and that its continuing to help with the chronic pain. He said where my muscles and ligaments are fairly weak from the hyper-mobility, these regular exercises will help strengthen them in hopes that is will help the main areas of my chronic pain, which is lower back, hips, knees and ankles. Overall a good appointment, my next one is in March so I have sometime to do my best with these exercises.

This Wednesday 23rd I has 2 hospital appointments in the same day, which made for an incredibly long, exhausting day.

My first appointment was at Christchurch hospital at 11 am and that was for Rheumatology, as soon as I got there I saw the nurse and she came over and said hello to me, I asked her if she needed a pee sample as I was bursting to go! and she said yeah sure that would be helpful and got me a sample point so I could go. I waited for about 10 mins for my appointment, as I was a bit early. Man its so bloody hot in hospitals! I was all wrapped up in a million jumpers as it was cold outside and had to take them all off when I sat down, for fear of boiling to death! When she had finished up with her previous patient she called me in. She’s quite a young nurse, I think she’s around my age (I’m 33) or a bit younger, she’s so easy to talk to and we talked about everything from my physical health to my transition. Which is great to have a nurse ask questions and actually be interested in me as a whole person. She’s going to ask me physio to write me a letter for the gender clinic re top surgery, as its something I forgot to ask him when I saw him. I said that the physio had said my posture needs correcting and I explained to her, my posture is bad because I often roll my shoulders in and hunch my back to hide my chest as I don’t bind very often and I explained that having top surgery would correct my posture because I wouldn’t have to be always hiding my chest. I asked if he could write a letter in support of top surgery as it may help push things along, she was very understanding and said it makes total sense. The plan is to have a dexa scan (bone density scan) to check my bones, as my last dexa was in 2016, so I’m due a scan. She also agreed its time to see how well I do coming off steroids, as I’ve been on them half my life and its time to see if I can remain well off them. The plan is to go from 5mgs to 4mgs for 4 weeks, longer if I don’t feel great. She said to go which how I’m feeling and then after that go down to 3mgs for 4 weeks and by then I’ll be seen by her again to catch up with how everything is going. I start on the lowered dose tomorrow, I’m a bit nervous, as I know its not going to make me feel so great to start with but I’ll stick with it. Overall another great appointment.

I got the bus into town and I had some time to kill and I was hungry, I decided to treat myself and I went to a ice cream parlour, where I had a Oreo waffle, covered in chocolate sauce, crumbled Oreos and toffee ice cream. I couldn’t eat it all but it was sooo nice and very much needed, seeing as I’d been up since 6:45am!

I got the next bus to Poole hospital and this was an ENT – ears, nose and throat appointment. My appointment was at 2:30pm and I got there 10 mins early and again MAN it was so freaking hot in there! They ran 50 mins late, I was so exhausted and getting a bit agitated because I was hot and wanted to go home. But it was worth the wait and thank god for our NHS we are so lucky to have it. This was a new ENT doc to me, she was super nice and easy to talk too and had clearly read my notes which was great. There were a couple of students in there, observing appointments, I love having students in my appointments because these young people will be looking after me when I’m older and if they are interested in specialising in rare medical conditions then I am definitely all for it! I’ve had meetings with rooms full of doctors, I’m always participating in studies where the hospital shares my tests results ets, I’ve spoken to many student doctors and nurses over the years and I think its really important for them to be observing and learning different aspect of patients that in the future will be their patients. I digress, but its an important point. We had a brief chat about my medical history and asked how I’m currently doing, as to which I said I’m doing well although I’ve had quite a blocked nose recently but I think that’s to do with the cold weather and going from hot to cold environments. She saw me at her voice clinic, so she could have a look up my nose and down to my vocal chords. It was pretty cool to see it on the screen, as she recorded it so I could have a look. She was surprised that I don’t have a hole in my septum, as that is often a symptom of my condition, which as a reminder is called Granulomatosis with Polyangiitis/Churg Strauss syndrome, so that’s good news! She was also surprised that I have no irreparable damage up my nose, vocal chords or wind pipe, despite the fact I’ve had my wind pipe chemically widened a few times in my late teens early 20’s. She said everything looks great and it shows that my condition has been well controlled over the years. She agreed to see me again in 6 months to touch base but if I need anything in between then I can call and see her sooner if I need too. Again despite the long wait, it was worth it.

I”m really happy with how things are going for me health wise at the moment, I have a great team of doctors looking after me and I feel listened too which for me is so important and I also feel involved in my care, which is something I’ve not had before, mainly because I was 14/15 at the time I of my diagnosis.

The long day didn’t hit me until Friday afternoon. Friday morning my mum came round at 9:30 am, she helped me sort out the curtains in the bedroom as I had just thrown them up years ago, they’re too long and I’d not pulled the string through so they were really baggy at the top. She showed me how to do all that which was cool as they look better now. We went to a cafe, for a drink and a scone which was nice. She dropped me back and I went for my testosterone shot at 12pm. After I walked home, I got the dogs ready to go out (didn’t leave straight away) and as it was nice sunny and fairly warm, we got the bus to Hamworthy park. It was such a nice walk, at one point I was sat on the bench watching scrappy running in and out of the sea and foxy just wandering about with the warm sun hitting my face, just perfect. We got back about 3:40, scrappy had to have a shower as he was covered in sand. I fully reclined both sides of my sofa, covered it with blankets, did up the hot water bottles and ordered some lunch/dinner. After I’d eaten a wave of tiredness came over me, I snuggled up on the sofa with the dogs and the cats and I think I fell asleep for about 2 hours. It was so needed, I’d felt exhausted all day but it didn’t really hit me till I stopped and that exhaustion lasted till Saturday.

Its funny I don’t always feel the effects of a long day like that, till a couple of days later. But I’m feeling better today, although that may change this week when I start lowering the steroids!

That’s it for now,

Peace out

Zak