Welcome to my first official blog post.
My name is Jessie-May, I am 23 years old and I am a very passionate hairdresser from Wiltshire (although I spend my days at the salon in Bath)
I can’t tell you how good it feels to share my experiences – not just with people who know how it feels to be poorly – but hopefully also with people who don’t.
I think the name of the blog says it all… I want to give an honest, thorough, and day-to-day account of what it means to be living with a chronic condition. Therefore sometimes the writing will be positive and fun and, of course, other times not so much.
Let me explain my condition and tell you a little more about how it all happened.
It’s called palindromic rheumatism or palindromic rheumatoid arthritis. The word palindromic means to come and then come again. Which pretty much sums it up. The flare ups just keep coming, all over the body, at their own leisure. Sometimes as a heavy, nagging ache other days a screaming, burning, I-can’t-go-on pain. Sometimes it’s my jaw or my shoulder, other days it’s my knees, pelvis, collar bone… You get the idea – no rhyme nor reason and no patterns at all.
The more consistent things are my hands and feet. I am a hairdresser, so I stand up all day (for 9 hours) and I constantly use my hands. Therefore the arthritis has decided to reside in all my fingers, wrists, toes and ankles, with no let up.
Lucky for me I work in a salon full of babes and lovelies who have helped me through some of my rougher days. And I love my job, like really love it. It keeps me sane and makes me feel capable. It’s something I know I am good at, and the thought that I might one day not be able to do what I love truly breaks my heart.
Which is just one of the reasons I have made a promise to myself. I have decided I will do anything I see fit to make this condition more bearable; to reduce my symptoms, to be brave and to handle whatever is thrown my way. I have only just got going with my journey to feeling better again, but I have already tried a few different “experiments”. I’ve been on various diets including juicing for 3 weeks!!! (More about that another day). I’ve had homeopathy, electroacupuncture, lots of different medicines and I’ve seen a nutritional therapist.
Now I am not a doctor, and have only tried these methods out of curiosity and desperation when I have been super poorly and craving some relief!
I do as much research as possible before I try anything new that could interact with my condition. It’s important that you consult with your doctor before making any changes.
I’m yet to find anything that really works although my illness has gotten better occasionally; I even had a 10 month remission period and ran a 10k race. The nature of my condition is so sporadic and unpredictable it’s hard to know if any changes are coincidental.
The last 6 months have been some of the hardest. After 4 years of trying to stay positive, a really severe flare-up has finally gotten to me. My mood has changed for the worse and the relentless pain has become an emotional trigger for me. Not only is crying exhausting in itself, it sends a “stressed” signal to my brain which then causes my body to react with yet another flare.
So I’ve had a word with myself.
I knew I had an appointment with my consultant coming up and decided I would make the most of it and go in with a good list of questions, and with my boyfriend as back up.
Luckily I had my appointment with one of the nicest, pro-active doctors I’ve met yet. She examined my whole body, took a joint count, gave me a steroid injection, answered my questions and even gave me a hand taking my skinny jeans off. All these little things made a world of difference. I went in feeling fragile, in agony, and fed up with no solution and no idea how I was going to get through the day, let alone live the rest of my life with this disease. I came out feeling like a different woman… I felt positive, relaxed for the first time in months, and like I had a way of finally handling my shit again. The doctor also referred me to a physio when I told her I’d recently joined the gym because I had felt so weak due to RA related muscle loss; and an occupational therapist to talk through my options of making the day-to-day a little easier.
So my new course of action is biological therapies (as I said before I have literally tried everything else). I have a one hour appointment with a lush specialist nurse called Jan in a week’s time to discuss my future on this, hopefully, miraculous medicine. It’s a self-administrative injection once or twice a week, which I’m a bit nervous about. Not because I’m scared of needles (lol can you imagine if I was) but just the whole self-injecting thing slightly creeps me out. Anyway I’m sure after my appointment and one or two goes of doing it myself I won’t even give it a second thought.
So that’s me so far. Even though I was diagnosed 4 years ago I still feel very new to this journey and I’m learning so much all the time.
I’m looking forward to sharing more, and I’m actually finding the writing really therapeutic too, so thank you for having a read!
Until next time, sending gentle love.
Meet Jessie-May and other friendly folk on Arthur’s Place Social, our Facebook Group
(Any opinions expressed in Jessie-May’s blog are not necessarily shared by Arthur’s Place. Nothing that you read in Jessie-May’s blog constitutes medical advice.)