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Posts Tagged ‘multiple sclerosis’

  1. MS awareness, working and suffering

    June 22, 2012 by admin

    So, this has been a rather happening week in the world of MS, never before has so much been said about MS in the press. It has kept me rather busy at work, which is of course good. However when I walked home today three things kept on annoying me.

    1. People having a go at other people with MS or MS charities that say that it is good that something like this can raise awareness of MS. There is a huge misunderstanding here, it is NEVER good when someone gets diagnosed with MS, never. However when someone in the public eye approaches the press and talks about it, this is a good thing. There are 100 000 people in the UK living with MS, it is one of the most common neurological conditions for young adults. Yet we very rarely hear anything about it in the media. And from the news that has been circulating this week in the media, it really proves that the general public does not know enough of the condition at all. So people like Jack Osbourne are very needed to help raise awareness.

    2. Jack getting fired from his job because of MS. This makes me see red, with MS you should never assume anything, you never know what is around the corner. After living with MS for a few years you get pretty good at reading signals. And then you’ll know what you can and can’t do. But for someone to say to him that he is a liability because of the diagnoses is just utter nonsense. In the MS Trust at work with MS book you can read

    “On receiving a diagnosis of MS, family, friends and even health professionals might give advice to stop working. This could be because they do not understand the nature of MS or because they want to protect you from stress..”

    Research shows that 15 year after being diagnosed 80% of people with MS no longer work. I do think with more awareness and help, this number must be able to go down. But it most certainly never will if people get fired like that. His employers should be ashamed of themselves.

    Last year during MS Awareness week we were interviewing some great people with MS at their places of work, talking about how their employers had helped them to continue on working. Now I know not everyone can, but the ones who can and want to, should be able to get the help to do it. I’ve had to make some small changes at work myself, and I think it is working out well for me and my employer. Here is a video from last year of me talking about work and MS (pardon the rather dodgy blonde hair)

    3. The term MS Sufferer. I HATE it. I am a person with MS, I may suffer from time to time. Some people with MS suffer all the time, but they are still people. They are not defined by their suffering. Stop using this term NOW! I was on the radio at the start of the week, and when they presented me as a sufferer I really hated it. Thankfully it was changed later on. Really I should have made sure it was never used in the first place, as it seems journalists likes this term.


  2. On being “normal”

    May 12, 2012 by admin

    As a child I probably wasn’t what some parents would call “normal” I was a bit of a loner, my parent’s used to encourage me to go see my friends, but not having too much luck. I have memories of being about 4 and telling my mum I was going to see my friend, but instead I hid behind the garage for an hour and played alone, then I went back and said I had been to my friends house. I used to hate kids birthday parties. This continued on when I was a young teen as well when my classmates would go to discos, instead of fighting with my parents about not being allowed to go, I would fight with them about the fact I wanted to stay home. But when I look back at my childhood, I was very happy, I wasn’t lonely just because I was a loner.

    When I started college I made friends with a girl who also was a bit peculiar, but the difference between us, was that she hated being called odd, she just wanted to be normal. Me I always used to see “normal” as a bad word. Something the cool girls at school were, you know the ones that stood outside and smoked and had a much older boyfriend, a great wardrobe filled of nice clothes and everybody was meant to want to befriend them.

    However now as a 34 year old I have come to think about normality in a different light. And this light is shining from a big 1000 watt bulb called Multiple Sclerosis. I wish I was normal. I wish I didn’t have turns at least twice a day of really bad fatigue. I wish my speech doesn’t become muddled because I can’t find the right words. I wish tasks wouldn’t take me longer than they should because I can’t concentrate. I wish I had never felt a MS hug, or vertigo, or dysaesthesia. I wish I had never felt like my body wasn’t my own anymore, like I was getting another person dressed as my torso had gone numb and touching it felt alien.

    I wish I was normal, yet I know I am very lucky. My MS is not stopping me from doing my job, I have no physical disabilities, you can’t see by looking at me that something would be not “normal”. Most days I just get on with it, and through my work at the MS Trust I am reminded daily how incredible lucky I am. Because MS can be awful, MS can destroy and MS can mess your whole life up. That is why it is so important to have support. Once again I am lucky because I work in a place where I can just walk into the information team and ask them about any MS questions I have. I know a lot of people that could do with that. That is why the MS Trust exist, they are there to give support to people with MS and their families by giving information. People might not be able to do as I do and walk into the info teams office, but they can pick up the phone and call 0800 032 38 39 with any MS related questions they may have. The Information service will try and help.

    I am incredibly proud of being a part of this organisation, they helped me when I was diagnosed, before I worked there, when I was alone with my questions. On May 20th  BBC Radio 4  will air the MS Trust Appeal at 07:55 and 21:26 or the following Thursday at 15:27. I hope you would tune in and have a listen to Chris Jones, the co-founder of the Trust, one of our Trustees, my friend, and another member of the MS club and listen to what she has to say.

    So anyway I guess I am not normal but hopefully I will get back soon to my former frame of mind, where I actually think that that is ok  not to be “normal”.