So….I wonder how I’ll start this?

Firstly, hello! Thanks for reading my blog. I hope to achieve two things with it – mainly I hope to be a help to other people living with MS. I also hope to help myself a bit by having somewhere to empty my brain and organise my thoughts on living with this strange, unpredictable, incurable illness.

A little bit about myself; I’m Melly, I’m a broadcast engineer, I’m currently 37 years old and I was diagnosed with Multiple Sclerosis when I was 25, after 4 or 5 years of medical investigations into various symptoms I was experiencing. So really, I’ve lived with MS for all of my adult life. I’m in the UK so I am treated through the wonderful thing that is the NHS. I’ve also moved around a bit over the last couple of years so have experienced the differences in care that is available for people with MS in different areas of the country. I don’t have kids and I live with a very lovely fella who seems to think I’m awesome despite all my flaws.

What really made me want to start this blog was a realisation that maybe my situation could be a comfort to other people with MS. I’ll try to explain – since my diagnosis in 2003 I have continued to work full-time (with one 6-month exception that will get covered in a later post), I also snowboard, I run several times a week, I have an active social life and I restore and go on adventures in my vintage camper van. I’m more active and in better physical shape now than before I was diagnosed, and this week it hit me that maybe I should be proud of that. I’m not saying that I am on top of the world, symptom-free and laughing every single day. There’s no feeling in the soles of my feet and hasn’t been for the past 5 years. 7 years ago one of the muscles in my left leg stopped working for a month. The thumb and forefinger on my left hand have virtually no sensation in them. Balance is a skill I said goodbye to many years ago. Cognition and emotions can be a real hurdle sometimes and every single day I am completely, totally and utterly KNACKERED. But I enjoy life, I love my job and I have to admit that some part of me relishes this challenge that my malfunctioning immune system has set me. I refuse to let it get the better of me. Little obstacles keep getting thrown in my path and I have to adjust my life and behaviour to get around them, but not once yet has it managed to knock me down and keep me there. I keep bouncing back and I feel stronger in my head every time that I do. I know that I’m lucky, I know that my symptoms could be so much more severe and I could be in a much worse situation physically. But rather than focusing on the negative I want to do a blog that shows someone getting the better of MS, fighting back, looking at it with a sense of humour and coming out on top.

Someone I was with when I was diagnosed hated me talking about MS. They said it was boring, it was all I talked about and that no-one wanted to hear about it except me. I did mention it often to start off with, but I was trying to process it all in my head. I took the comments on board and never mentioned it, never said how hopeless it could make me feel, how downright scary it is and how utterly fed-up I could feel with my own useless body. Looking back now I don’t want anyone else to ever feel like they can’t say those things without boring people. Talking about it helps you put things in perspective, makes you realise things you couldn’t quite connect when the thoughts were only in your head. My last intention is to whine on and bore anyone, but it is something that needs to be talked about. Feeling scared of your own body isn’t something anyone should have to experience but sadly many people do, and sharing fears always helps make those fears seem more manageable. No-one should feel alone. Focusing on MS all the time isn’t healthy, but neither is bottling everything up. There’s a happy medium!

I hope you enjoy reading the blog, I aim to update it at least once a week. Feel free to comment, I’d love to hear from you.

Keep smiling!

Melly <{{{><