What a week or two I've had.
The Friday before last I had my remicade appointment.
I have always been treated really good by the NHS in University Hospital but last time that was not the case. It was awful, truly terrible. Ten minutes in I actually vomited and started to shake and have an awful headache. I felt really rough and the nurses didn't seem to bothered. I was getting in a right state and actually at one point wanted to walk out but Mandy calmed me down. Now there was a catalogue of failures by these perticular nurses. The main thing thats important is I had my remicade and made it out alive. (Not before bleeding all over the place). I contacted my IBD nurse through email and she is sorting it all out. She is a hundred percent on my side. Emailing very upset emails is not what I need to be doing when I get back from the treatment!.
I almost quit. I did not want to go back which I think is understandable. I thought about it and decided...
To carry on with the Remicade.
As I have said before the other staff have been brilliant, and the remicade is beginning to work a bit more and it's so much better than the prednisolone.
Now on to the second awful thing that I am recovering from.
On Thursday evening my leg felt a bit stiff, I was joking with Mandy about it (I was trying to stretch it by holding on to a tree and pretending to be a ballerina!). We went shopping to Sainsburys and I was limping a bit. By the end of shopping I could hardly walk at all it was so very painful. Well I went to mums to stay the night 'cos Mandy was going out partying. The next day it hurt more but I dealt with it. Then about 6pm my arm started to hurt really bad over the course of the next hour or two I couldn't move both arms at all without being in awful pain and with my leg hurting I was finding it hard to move.
Mandy tried to calm me down, then shit got real.
"Do you want to go to hospital"
this sorts the real emergencies from the tolerable pains I get. She knows I will never go to the hospital unless it's neccessary.
"Yes I really do"
What followed was 20 minutes of calls to mum and dad and Mandy trying to convince me to let her call an ambulance.
As far as I am concerned ambulances are for people who are gonna die if they don't get help. I couldn't move my arms and needed help walking but I could do it.
I went to A&E with Mandy. We saw a note saying we must immediately tell the nurse at the check in desk if I am immunosupressed (which I am due to the remicade). We waited for an hour until I saw the triage nurse and she took my temperature (High) Remarked on how good my blood pressure was and checked my pulse. It was so hard to explain all the meds and stuff I had been on. I also had to explain when I had my infusions and how far apart which is tricky. It was about 30 minutes before I was taken in to a kinda ward. I had my temperature checked again and my blood pressure. I had to do a urine test. Then fill 3 vials of blood in a blood test.
My veins are not good when it comes to blood tests. The nurse said this was because of all the injections and stuff I have. Anyway it took 3 painful tries and the blood just trickled in to the tubes so it took ages.
So after sitting there for a while it was comfirmed I had a Urinary tract infection.
Okay....So how the hell did that explain the fact that my bloomin' arms couldn't even be brushed without actually causing me to scream. Well because my immune system is so low the normal aches and pains that come with an infection go absolutely wild. I got given some antibiotics and we had to wait while she went through what pain medication I was allowed on with Remicade. Paracetemols. That was it. So we went home with the directions that if in two days I didn't feel better I had to go straight to Coventry hospital as it would be very seriouse.
We came home and the last few days have been hell. I couldn't sit up by myself. I couldn't go to the toilet by myself. Mandy even had to feed me! I was in so much pain. Three in the morning Mandy would run me baths and help me get in just to get a tiny bit of relief. The dog was very confused about it and has spent the whole time looking at Mandy with his head cocked as if to say "What the heck did you do!" It kept me laughing.
Now I am happy to say the nightmare of that infection is nearly over. My arms are back to their old self. I can actually do things!! But I do feel a bit traumatized. Not being able to move was just horrific. How can an infection take hold so quickly.
Damn Remicade You Scary.
