I hate hospitals.
I hate going to them even more.
I hate not knowing what I’m going to hear. Not knowing if I’ve gotten progressively worse. Not knowing what to expect. Not knowing if I’m going to see the nice side of my specialist or the nasty side. Not knowing if I’ll cry. Not knowing if I should go alone or if I should take support. Not knowing what’s to come.
I hate everything about them.
So if you couldn’t tell where this post was going…today I had my first appointment with my specialist since I started cosentyx.
I spent the day at work writing, then re-writing, lists of the positives and the negatives. Scared that I’ll forget something, that I’ll retreat in to my shell and panic and not know what to tell him.
- Clear skin
- Less stiffness
- More dexterity in some fingers
- Almost walking normally
- Fatigue levels manageable
- Green light from orthopaedics about having my toes straightened
- 5 toes have had work on them in minor surgery, just the 5 to go.
- Perpetually full of cold
- Ankle continuously swollen
- Knee becoming swollen
- Some fingers still so bad I swear they’d feel better broken in two
- An elbow that has started to refuse to move
- Anti-inflammatories not working
- Orthopaedics will only operate on me when I can prove that my symptoms are under control. Which they’re not.
Do I go alone? I’ve always found my specialist was less of an asshole when I went alone. But if I go alone I’m liable to forget most of the things he tells me. If I take someone with me, then at least that person can listen and give their opinion on how the appointment went afterwards and tell me any key points that I might have missed. But on each occasion I have taken someone with me, Dr Evil has been vile and I’ve ended up in a heap of tears every time. What if I have to go for testing and x-rays and all manner of procedures and I’m by myself? If I ask for support, does that make me weak? If I expect support to be given without asking, am I being needy?
So I went alone. Not least because it’s a logistical nightmare trying to leave work without leaving too early and then picking up my hospital buddy and driving there and getting parked and oy the struggles. But also because each time I go alone I get a little stronger. At least this is what I tell myself. I am an adult. Adults do things alone. Adults don’t always have the support that they might want. Adults can go to appointments by themselves and cope.
But adulting is very hard.
I spend far longer worrying about how the appointment will go, and what the potential outcomes of each imagined situation will be than in the actual appointment itself. I spend too much time worrying that I’m not sick enough to warrant the attention. That maybe the symptoms are still in my head as he made me believe for so long. That maybe those fleeting, infrequent new symptoms are the M.S I’ve been warned about. That it could also be fibromyalgia. That my inability at the moment to process food is caused by more than just a psychological worry. That maybe I am the problem. That maybe there are lots of problems.
I worry immensely about that dreaded weigh in. As someone who has always had problems with body image and weight, getting told what I weigh is hard going. I don’t weigh myself. If I don’t know how much I weigh, I can’t obsess about it and adjust what I eat, or don’t eat, accordingly.
But I keep those worries to myself. I’ve been told off one too many times at the hospital for talking about things my specialist doesn’t care about. That numbness in your hand? Not interested. The fact that sometimes you can’t remember how to spell your own name? Definitely not interested.
The appointment today?
It went….well. Although the nurse didn’t listen to me when I asked her not to tell me what I weigh. I am officially the heaviest I have ever been. This is hard to deal with and will take some strength to not act on. Like Ross Geller in Friends before me, when asked how much he weighs “I’d prefer not to answer that right now, I’m carrying a little holiday weight”.
I have the green light for surgery. It took a lot of strength not to cry at hearing this.
My inflammation levels are no longer alarmingly high. Just high. Which is good. Increase some meds and it should continue to subside.
“Keep going as you are, I’ll see you in 6 months….You even look like you’re doing very well Rebecca”. Words I never thought I’d hear him say to me. My specialist was almost nice to me.
The anxiety has gone…for now. Only to reappear when the next appointment letter comes through my door I am sure.
But right now?
My bags are packed. My flights are booked. I’m going home for a few days to put my worries behind me. To spend some well deserved time with my Sister. To give my city, the city that made me, the love it deserves. To spend a few days being me. Just me.