Reminiscing

Reading the Hemihelp page on Facebook tonight, where parents are having to learn to deal with their childs' physio and inner embarrassments and frustrations has lead me to reminisce about my journey through my childhood and beyond with Hemiplegia.

I got my first splint at the age of 6, and I will always remember that I was taken out of school one day and I had the plaster of paris (the lushest feeling ever) done, to measure for my splint. I came into school the next day to gossip from the other kids that Steph was going to have a plastic leg and that I was going to be different to everyone else. That night I went home crying that I didn't want my splint because I was going to be different and everyone else was going to notice. The self consciousness was unbelievable, even at such an early age, and that was before I had the splint!

When I did get the splint, I found it uncomfortable to begin with and, although it had a very cool butterfly pattern on it, I didn't want to wear skirts when my splint would be shown or take my shoes off etc. My mum noticed, and bought me the "Hands up for Andi" book, which told the story of a girl who got a splint and who wanted to sell it because she was that embarrassed of it. Eventually she met her hero, who signed the splint and she kept it and loved it. The story told me to love my splint and love who I was so, eventually, the splint issue was overcome.

The next issue was that of the physio, surgeons and general health, which, in reality, is yet to be resolved. When I was younger, I had a great physio named Jane, who knew exactly how to get me to do my exercises, got me a hand splint which I needed, and made me feel accepted. Unfortunately, after around 6 months of her intervention, she left to become a police officer. After that, the physio's discharged me and didn't really get in touch with me.

Then, when I moved from the area of Newcastle into Sunderland when I was 16 years old, my doctor decided I needed a paediatric physio, which would help me get some new splints and exercise which was desperately needed. The physio in sunderland was called Mandy, and she was excellent. She referred me to my first surgeon who gave me a few bouts of botox, which helped to loosen my leg but had adverse effects on my fingers, and helped me overcome this.

As time wore on, I grew older, and eventually, I was too old for the physio to keep on their books, so when I was 20 years old, I was sadly discharged from the physio, but continued on with my first surgeon.

Then came the issues with my hip, and although my surgeon tried cortisone, steroid and local anaesthetic injections in my hip (very painful) nothing seemed to work and so he referred me on to my now Lower Limb Specialist, who, after one x-ray, found that I have Hip Dysplasia, which basically comes from my hip not forming properly as a child and then becoming deformed as my leg length was corrected at the age of 14. To fix this new problem, I needed a major operation to break my pelvis, and re-align my hip. Although, in hindsight, I probably wasn't ready to have this operation emotionally, I pushed ahead with it, and after it being cancelled and postponed for over 3 months after my original operation date, I had the operation to re-align my hip, learnt to walk again (with crutches) and started getting on with my life.

Is that everything? You may ask. No... the story continues...

 The day I thought I was on my feet was the day 6 months after my operation, when I had an appointment with my surgeon. I had been experiencing some pain in my hip, and the limb reconstruction physio wanted to get it looked at, and I thought that is was just a bit of bursitis, and after a few cortisone injections I would be as right as rain. Wrong. It turns out my hip had healed TOO well (how?!) and extra bone had formed on my hip, causing the screws to be in the wrong place and so causing all the pain. Another operation was needed.

This brings me to today. 3 months on Thursday since the second operation, I have had my 6 week check, and am back to work, living my life as best as I can, whilst trying to recover on the go. Although I don't think my hip will ever fully recover, I am hoping for the wasted muscle to be eventually built up, and for my legs to actually do what I tell them to in the future. I don't have a physio, so am just going on as I see fit, and hopefully this works.

In the meantime, I have been referred to an upper limb surgeon for my hand, as this has been well and truly neglected over the last 2 years due to the focus on my hip, and I will hopefully get this sorted eventually too.

My advise to all parents, or people with hemiplegia/any other disability, and they are struggling is that with age, you learn to accept your life the way it is dealt to you. No one is perfect, everyone has imperfections, ours is just a little more severe. We all struggle at times, some worse than others, and at different points in our lives, but believe me when I say life with Hemiplegia is OK, and I wouldn't want it any other way.

Yes, at times I cry, get frustrated, hurt, but I always have the belief that things can only get better and the sun will shine.

I realise that this blog is one of the longest I have ever seen in my life, but if you have read this, I hope it gives you some insight into my life, and gives you hope that things will be OK as they are in the end, whatever the hurdles.

Thanks very much for reading, I'll write again soon.

xx