I am writing this from Salford Royal, the hospital that I am doing a research trial for. I am having my first relapse since diagnosis in May this year.
It started a little over a week ago, the burning hot pokers running through all the bones in my right side. I hoped it was a twinge. It wasn’t, soon the pain was joined my numbness and weakness. After a couple of days limping around work I phoned the research team, they booked me in for two days later.
Off I went to the hospital for the dreaded examination and blood tests. One vein dried up so had to try another. key 2 bruises on my arms. The dr told me he thought I was relapsing. I will be honest I was relieved. Imaging that. Relieved to know you’re in relapse! Crazy, however I am sure many of you will understand that a relapse means it should go away, not stay with me full time. Don’t get me wrong I was sad too because let be honest here, a relapse means more damage to my brain or spinal cord, or both.
The dr told me I would need to have a EDSS test with another dr to confirm my relapse and treatment, this was a Thursday and I was booked in for the following Monday.
Another trip to the hospital for more tests, more bloods cause the last sample was insufficient for the amount of tests they were doing. This time bloods were taken from my hand as my arms were still badly bruised from Thursdays attempts.
Off I toddled back to work. The following day I got a phone call saying I was relapsing for sure so would have to go back for 3 days of IV steroids, starting tomorrow. God help me. When I had the steroids in hospital after my diagnosis, my arm swelled up and I felt like I was being pumped full of acid. I was terrified but I knew I had no choice.
My first day on steroids was a little bit fraught, I had to be at the hospital for 8am to see my dr. He explained what would happen and the nurses kept me entertained for my little stay. Once I was hooked up, the horrible metallic taste came, then the headache. As well as another bruise developing on my other hand from the cannula. But no swelling and no pain. It turns out when I was in hospital the IV wasn’t in my vein properly and that may have caused all the trouble because it leaked as well.
I went back to work after my steroids, stupid I know. But in case you haven’t read my other blogs I am stubborn, too stubborn for my own good sometimes, I’ll be honest. But if it keeps me fighting I don’t care!
9 am the following day I’m scared of where the drs will be able to place another cannula as now I am starting to look like a massive junkie! She decided to use my wrist. I even watched her do it. That’s a massive step as before I began my journey with MS I had panic attacks and fainted when having needles. I was so proud of myself! The infusion passed without much trouble and I managed to use my time constructively and did some online shopping for Christmas! I went home and spent most of the day in bed after booking the day off work.
Today, as I am sat here writing this, is my third and final day of Steroids. I still have the metallic taste, the headache and have developed a bad case of insomnia but what other choice do I have. Brave the relapse symptoms or brave the side effects of the steroids. I choose side effects.
Why? Because it’s the lesser of two evils. My walking is better and I am getting stronger. Yes the side effects are bad but I still have my independence.
Today it has taken 2 attempts at finding a vein, all my good veins being used up already. My wrist was no good so another vein was found in my hand. Hopefully they won’t bruise. But knowing my luck with these things I am going to be one big bruise when they all join together!
Thanks for reading and remember we can get through whatever this horrible disease does to us, we may not feel like the same person, we may walk funny or not at all but we won’t give up!