So it's that time of year again when the needles are a plenty and the heart palpitations are relentless....the dreaded hospital review....and guess what? This time I faced it alone! I had my big girl pants on yesterday, took a deep breathe and got stuck in....well I might as well right?
So there I am at 8am, no make up on in case they want to check my skin, no nail varnish on (a cardinal sin in my book) because my nails have been showing signs of immune system damage, and I am wearing really old clothes as I can't really be bothered dressing up nicely! I feel positive even though I am pretty sure, as with all these things, that my body is on a mission to bring me down! This lasts until I get the bus....
The journey there is always longer than the 5 minutes reality takes.
Oh the bus...the joy of sitting there firstly looking a little drawn and pale, surrounded by people looking as alone as I feel. This bus only goes to one place...Stepping Hill Hospital....and I start to wonder why we are all heading in the same direction. Then there is the fact that I know I have brought the wrong letter with me - I have brought May's appointment letter and not Augusts...this means longer waiting at the desk to sign in.
Then the questions pop up! I have a list on my phone and I go through them...they go like this....
- I want to run through my last blood test results so I understand what each of them mean.
- I need to get my left ankle checked, mainly because it's been swollen for 2 weeks.
- My shins hurt...when I say hurt I mean blinding bone breaking pain...help please!
- I need new pain medications! I can't always rely on the strong ones.
- Why at my last appointment did they mention new drugs and what did they mean by you have a complicated case?
By the time I have been stuck in my own head I realize the bus is pulling into the gray and miserable building. I have said it before and I will say it again....they need to start painting hospitals in fun bright colours....maybe some murals, or some sculptures...come on NHS!
Ummmm I have forgotten the way
I have been here so many times I could find my way to Outpatients Department A with my eyes closed! However I seem to have completely forgotten the way. I feel so small surrounded by all these big buildings and people that I just stand there staring at the corridor...oh yes the glass corridor that is where I need to go. I just have to put one foot in front of the other...that is all! Nope, I cannot move I am frozen staring at the mobile MRI unit, well until someone catches me staring then I hurry off.
The corridors here are frightening in themselves. They have beds lined up down the sides..which is not a pleasant sight for anyone. They are a really dull shade of gray and on a dreary day like today that doesn't lift my mood.....on top of all this I am too short to see the signs properly. Oh well, I plod on I know the way I am just procrastinating!
The sign in desk is when I really feel the panic. It's an odd feeling, that even the most hardened veterans like myself, will feel. It's not the panic you feel when you lose your keys or narrowly avoid some black ice. It is a panic that starts at your very core and never resides...in fact,for me it can last the entire day. The knowing that you are going to have to face your fears is often harder than facing them. I sign in, explain the fact that I have brought the wrong letter and wait until they finally find me on the system. I go to Suite 1, get given a gown, a urine sample pot and shown into the room for my weigh in! Wednesday mornings ladies and gentlemen!
The fun begins....and seemingly never ends!
I weigh a lot less than last time! They are not impressed...I get the have you been eating healthily, have you been unwell...then it comes to the dreaded...well you are in a flare up so that will be the cause of the weight loss. However they are not happy about it so I am given an ensure drink...they give me the vanilla one...I hate the vanilla one it reminds me of boiled sweets!
Then my BP is checked, it's high again. "Is your blood pressure usually high?"..."No" I answer "But I am about to go in for my meeting and I am scared so what in the world do you expect?" Anyway it is up and that's being written down on my notes...oh well not much I can do about that now. I sit on the bed, with the roll of blue tissue on it, I know that is in case I bleed all over it, which doesn't fill me with confidence and I end up picking at it incessantly.
Bloods next. As I have been on a new treatment for 3 months they need to check for specific things - Liver function being the most important and as my bloods came back with not brilliant results last time they are being really careful! There are 8 tubes I count and 3 different sized needles...I choose not to look at them and instead read the hand cleaning tips! They are mildly interesting! The tourniquet goes on, my arm throbs and I have to make a fist! Right arm first, needle goes in, doesn't hurt! Nurse decides to talk about my tattoos...I think she thinks I am nervous, but I simply don't care at this point. Then she explains this is going to hurt as she cannot get a vein...and hurt it does! The pain shoots up my arm...I bite my lip...grit my teeth and start the hand cleaning guidelines over again!
The right arm was useless. This is going to bruise tomorrow. then they have a go on my left arm, by which point I am feeling a little sick from the pain of the last one! Trust me when they don't get a vein it is a knock you sick pain. I get some water and take a deep breathe! It just is not happening. she is digging that needle around in my arm and the pain, the feeling sick all get's too much, I feel blank and start to cry........NO CASS!!!! no tears, be you, face it! And then it's done. I look at the clock, it's taken 45 minutes to get the bloods. Not a great start and I haven't even made it into the consultant yet.........
The waiting room....
Back in the waiting room I catch my breath. I notice the young girl and her mom next to me. she has a Hydroxychloriquine leaflet and looks upset! That was my first treatment and all I want to do is hug her..wouldn't be wise as I don't know her, but I know that spaced out, too much information look. I avoid reading the leaflets today! I just sit, my battery is dying on my phone and I suddenly feel very very alone.
And this is where I end today folks...Part 2 tomorrow...let's just wait!