Me, My MS and I


Dee Dee, Johnny, Joey et al…..

After a conversation with some of my fellow #msposse mates on Twitter about what we name our MS lesions, I revealed I’ve named mine after The Ramones, so I thought I’d share it on here too. Some people also name the floaters in their vision. One lady has named her two biggest lesions Ed and Brian.

It may sound flippant or childish, but I think it’s a fun way to personalise them and they are, after all, part of my body, and I’d rather embrace them and ‘make peace’ with them than bemoan their existence – they aren’t going anywhere any time soon!

I’m not entirely sure why I chose The Ramones, but the number of band members and the number of my lesions tally, and I love the band, and so it became! Although if the number of my lesions increases, I’ll have to add some more names and they’ll perhaps become ‘honourary’ members of my Ramones. Somehow I don’t think Roger or Nigel would fit in with the theme, so this may take some serious thinking!

As people living with MS, it never ceases to amaze me how much we rock! Faced with adversity at times, we never lose our sense of humour and carry on regardless. As the hashtag we use on Twitter says, #MSersRock : )

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Shifting MS

One of my Twitter friends, and fellow MSer, Gav (@thehappycovv), has helped to create  the fab documentary below called “Shifting MS” alongside Gloria Morris, who worked tirelessly producing the film. It’s absolutely brilliant and I couldn’t agree more with the sentiment – I may have MS and it may be rubbish at times, but I won’t let it get in my way.

I’m all for inspiring people to fight MS and live their life to the full. The young people in this documentary inspire me to do more, and it’s very uplifting. If you enjoy “Shifting MS”, please pass on the link to Gloria’s YouTube page!

Shifting MS – “We follow a group of young MSers and their families as they share their stories and experiences of being diagnosed with MS at such a young age and how they don’t intend to let it stop them achieveing their goals in life. Featuring interviews with consultand neurologists Dr Simon Shaw and Dr Martin Lee as well as MS specialist Physiotherapist Kate Goddard.”

You can also find the documentary on YouTube at this link: http://www.youtube.com/watch?v=59HQ6v_5_EM&feature=player_embedded


Happy New Year!

As the new year is now in full swing, I look back on the past year with a certain amount of astonishment at my accomplishments, and look ahead to the coming year with excitement. To many the accomplishments may seem small, but to me they are huge. I intend to build on and improve on them and add more to the list this year. Things look bright and wonderful and I sense a rather fantastic year ahead.

Although my relapse is in still raging away and I start (the postponed) intravenous steroids at 0930 for 3 days, my thoughts aren’t on that but on the things to come: already my ‘plans’ list is rapidly filling up with interesting projects and ideas.

I received a Wii, Sports Resort and Wii Fit Plus for christmas and plan to use the Wii Fit Plus to try and improve my balance. My MS means that my balance is pretty awful, and after a recommendation from my physio, I thought I’d give it a go: it’s a fab way to track progress and I can monitor if my balance is improving or not. I’ll add posts on how I get on and reviews of the exercises etc. I also hope the keep fit and yoga sections will be of benefit too. Currently I have balance exercises which my physio provided me with, and I’ll continue them in conjunction with the Wii, but I feel the Wii will be especially beneficial when it comes to tracking my progress – it’s very difficult to notice small improvements, but if the Wii records them, it’ll encourage me to make even more of an effort.

As I’ve mentioned in a couple of previous posts, I have a series of new blog posts in the pipeline (I’m keeping the theme under wraps at the moment) and I’ll be starting to post them soon. My energy levels are low, so writing and research time has been more limited than I would’ve liked. As opposed to posting them daily one after the other, it’s probably more prudent to have a little space between them. They’ll all have the same title, with a number denoting the place in the series and I’ll file them in a separate category.

One of my blog posts and a little article I’ve written have been posted on the Monsterski4 website. They do a fab, and very difficult, challenge to raise money for the MS Trust. To find out more, and to support them, visit the Monsterski4 site –  http://www.monsterski4.com/ Hopefully I’ll be doing some more writing this year and I have a couple of great projects to come soon which I can’t wait to get started on.

I’ve always been artistic and I’ve decided to take up some of my art hobbies again. How far they go, or what comes of them, I have no way of knowing, but I’m looking forward to getting back into it. It may help my dexterity a bit too; I can but try!

The idea to spraypaint my walking stick has almost come to fruition: I just need to decide on a final design and find the paints I want and then it’ll be done! I’ll get round to that asap. Once it’s done, I’ll post a picture, and perhaps even start a service to paint sticks if the results with mine are good enough.

Still taking 2mg of LDN daily, but I have to stop it for the steroids and then start again after. As yet, still no improvement in my symptoms, but I’m hoping to see some great results after my relapse abates.

I’ve decided to apply for a disabled blue badge for cars as I find walking difficult and can’t walk for very long, and it means that whoever is taking me out in their car can park closer to the supermarket etc. I contacted the local authority – they were really helpful and the forms are in the post! It’s so easy: all I need to do is complete a form, add 2 passport sized photos, and a Dr’s assessment of my condition and difficulties. Hopefully my application is accepted as it’ll make a huge difference to my life and make getting about that little bit easier.

Another tattoo will probably be added to my body this year too…..

The future’s bright. The future’s mine to make.



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