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Posts Tagged ‘ms’

  1. In a twitterverse far far away

    April 28, 2012 by admin

    Twitter is amazing. Really I love it, I’ve met several great people through it both in person and online. Someone said that the difference between facebook and twitter is that on Twitter you follow people you want to get to know, on facebook you befriend people you already know. But in this MTV generation world, the short message style communication Twitter has just seems to fit in so brilliantly. I remember during the London riots the updates on there were more timely than on the news. Traditional media really is behind social media.

    Through Twitter I decided to set up my hat shop. Through twitter I established a little local hub of mums (follow me on letchworthmums). Through twitter I got to know lovely people such as Helenfrench and Emfrid .  But through twitter I got to meet a lot of other people with MS, both through the work I do at the MS Trust, but also through my personal account when I spotted people that I started following. I read their blogs and have a bit of a chat, and I admire how involved in the twittervese some of themt are. And how close many of them are, even without meeting each other in person. When I went to MS Life I had the pleasure of meeting some of them and it was lovely.

    This evening something really caught my eye, it was some people tweeting about this page  Pay-It-Forward Spoonie Style. Ok before I continue, maybe and explanation of the word Spoonie? It comes from Christine Miserandino’s Spoon Theory.

    “Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.”

    Anyway…back to my story. I  ame across the page Pay-It-Forward Spoonie Style. A girl called Vanessa  is pledging to get money for a new second hand wheelchair for fellow spoonie Margo, as her wheelchair has broken and would cost lots to repair  I have followed Margo on twitter for a good while now, and I read her blog, she even guest blogged for us at the MS Trust blog. And in the same way as I would sponsor a friend running a race for chairty I felt like I wanted to contribute also.  She has raised over £500 so far. So twitter really does create a twitterverse a little universe of likeminded people who find each other whatever locations they may live at. I love it, but then again I would. I met my husband on an IRC channel when I was living in Sweden and him in the UK back in the 90’s…but that is a different story!

    My Twitter necklace from twitter entrepreneur @AlyssaJewellery

  2. Siesta

    April 19, 2012 by admin

    *yaaawn* I miss naptime. My son used to be a good napper. From the age of 1 to 2.5 he would nap for almost 3 hours a day. This meant I could get some house work done, have a little read, but more than anything, I could have a nap.

    Napping is so great, particularly after lunchtime. I was reading up on post-lunch-drowsiness, this is what Wikipedia says

    Post-prandial somnolence is a normal state of drowsiness or lassitude following a meal. Post-prandial somnolence has two components – a general state of low energy related to activation of theparasympathetic nervous system in response to mass in the gastrointestinal tract, and a specific state of sleepiness caused by hormonal and neurochemical changes related to the rate at which glucose enters the bloodstream and its downstream effects on amino acid transport in the central nervous system.

    When I was first diagnosed I always used to nap for 30 mins or so a day to help me go out in the evening. This was back in the days of commuting and pre-children. When I was on mat leave I used to try to lay down and breastfeed at any opportunity I could to get some rest, I can’t really recommend it enough for any sleep deprived and tired mums!

    Nowadays I don’t get very many naps sadly. But today I manged to get one in whilst Mr T was sleeping in the buggy, I think the boring weather and a carrot cake made him very sleepy on the walk home. So when we got in I wheeled him in and curled up on the sofa for 20 mins. And I feel so much better.

    Napping rules! We should all be like the Spanish and obey the siesta!

  3. Me and my right leg

    July 9, 2008 by admin

    I don’t want to write a complaining post, I know considering I am lucky, and I try to remind myself of this as often as I can. I can walk, I can work etc. MS so far isn’t messing up my life too much. I haven’t had any relapses this year so far (touch my wooden head). So all in all, I don’t want to let myself complain…however…*sigh* there is always a but. I notice more and more that when I am tired, or if I walk fast a gripping strange feeling in my right thigh. If I run on the treadmill that feeling comes and also a strange sensation of that my leg is feeling weak, like I can’t trust it a 100%. What makes this ultra annoying is of course that it is all in the head, there is nothing wrong with the muscles, but the brain is sending stupid signals out, that go through nerves that got messed up when I had my first (and biggest) relapse. These feelings I get in my leg is called dysaesthesia or paraesthesia, many hard strange words to learn good thing I work at the MS Trust ;) . There is not really anything I can do about it, it wont be repaired, I can however be preventative and train my muscles as much as I can so if I would get more problems the muscles around the messed up bits can support and help it. This probably sounds worse than it is. I don’t feel it all the time, it is pretty much only when I really “use” the leg, when it gets heated up. Or when I am feeling a bit worn out. But it is odd and it does frustrate me a lot.

    Ok I am done feeling sorry for myself now! I had a good work out today too, tomorrow I will skip the gym and go home and try to have a relaxed evening instead. Now I must go to bed like a good girl.