Imperfection- perfectly imperfect!


So … my first blog!  Hi, this is me – Rachel. Thank you for taking a look. This is rather strange and a little scary. Where to start?! I turned forty on the 12th of January and decided that I’d like to open up and reach out to others about my, how do I put it … my crazy but wonderful life!

I was diagnosed with Rheumatoid Arthritis (RA) at the age of four and Dystonia at around twenty five. The symptoms of dystonia were sudden and started shortly after a massive flare up of my RA. I was 19 and had just had my son, but wasn’t aware that it is commonplace to have a flare up after having a baby.

I was in hospital for around 2 weeks as the arthritis flare up attacked my whole body and I couldn’t move a muscle. It started with neck ache which, within an hour, had me laid helpless. I was really scared and in agony. After hours of waiting – as the doctors receptionist couldn’t seem to understand the urgency (she had seen me in the surgery the day before) – I was taken by ambulance to hospital and given gas and air to help with the pain over the bumpy journey. I could only speak, not move! Once there, I was given steroid injections until, miraculously, I began to be able to move, just a little at a time and over the next few days.

One lasting memory of that time was when a drunk man was admitted on to the ward shouting and stumbling around. I was so scared that, along with another girl there, managed, like a couple of wounded soldiers in a film, to drag ourselves into the toilet and lock ourselves in. We introduced ourselves for the first time and somehow through our pain and fear, and despite shouting & swearing from the drunk man, we broke into fits of nervous laughter! I was once again in the hospital environment where anything is possible! You have to laugh.

My son was brought in regularly to visit, he will have been about 2-3 months old. I was kept up to date with his daily milestones; a bittersweet experience as I wanted to be there and witness them for myself!

The symptoms of dystonia then appeared. It completely freaked me out and I kept it to myself until I felt I had to mention them to my then partner and hospital staff. Nobody really took it seriously so this was the beginning of a very long private journey, one I now would say replaced the hideousness of my RA. I never thought I could have something worse than that.

I managed to break the silence some years later after being trapped in a cycle of even more self analysis than before. I was faced with a lot of anxiety as I was stared at a lot when out and about with my son. Nobody could believe he was mine because I ‘looked about twelve’. Twelve seemed to be the number of choice for everyone for some reason. I felt like a freak as I was very self conscious about my body, which I had been from being young. I was still recovering from the flare up of RA so dosed up on strong painkillers that make you feel like you’re on a different planet anyway, and now the dystonia appeared. I can only describe it as always having to fight the urge of my neck wanting to move all the time on its own, so I had to work really hard to make sure it didn’t. This was hard when you seem to be an object of interest wherever you go. On top of that, not wanting people to see my hands in fear of being asked what’s wrong with them.

I talk in the past tense, but this has over the years taken a toll on me both emotionally and physically. I have learnt to deal with it much better as I got over the flare up and moved on in life in many ways. Most things have proved to be a challenge, but this has made me strong and the person I am today. I’d say mostly good, but also it’s given me certain coping/self defence mechanisms that are not always helpful! That along with my fast becoming bionic body of mine.

To date, I have had a few operations main ones being, knuckle and hip replacements, toe surgery, and my next one coming up NEXT WEEK Arghhhhh, is the one I’m fearing the most. Deep Brain Stimulation (DBS). 🤕

I wasn’t sure what to put here as an introduction so just wrote whatever came out. I am terrible at cutting a long story short and getting to the point as you will probably have gathered – not sure any point has actually been got here 😁.

You can follow me to see and hear about my DBS surgery and future ramblings, and hopefully I may connect with others who can relate to me and likewise.

I think I should leave it there what do you think? Oh, I also can’t make a decision to save my life! The decision to ‘come out’ has taken half my life. So … till next time, stay positive, happy and grateful. My motto is; there’s always somebody worse off than yourself! ✌🏻😇

Rachel x