Tag Archives: daily life

Feb 17 2019
6 Comments
Daily Life

Playing The MS Game

Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.

I know when it’s best to:

Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.

Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).

Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …

Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.

Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).

Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.

LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.

Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.

Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.

I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?

I have absolutely no idea how next Thursday is going to be …

Tagged , , , , ,
Feb 16 2013
8 Comments
Emotions

Blogging Is The Best Therapy….

Blogging is weird. I started my blog last September. At the beginning it was a much-needed outlet to download my buzzing mind and create some sense out of the whirling thoughts, fears and expectations tied up in a life with MS.

I read a blogging instruction manual from cover to cover. I’m no techie, but I found a blog theme I liked, uploaded a picture and hesitantly wrote my first post, ‘The Loneliness of The Long-Term Diagnosis’ and I was off. I wrote about make-up, round robbin letters, work, emotions, The Teenager, my cat. I wanted to show that living with MS is not solely about symptoms, appointments and restrictions.

Ultimately, most of us are young-ish when we are diagnosed. We’re in the middle of bringing up our kids, working, studying, carving a niche in the world. MS could be re-named, ‘Life, Interrupted’. I wanted to show that life does goes on, albeit in a more serious, more measured manner. Saying that, I wanted to pull out the humour. Tease the threads of how life is different, yet essentially the same. We still worry about exactly the same things, just with a skewed slant.

I was shy when I told people I had started a blog. I had five views a day. Ultimately, I saw the blog as a diary, and perhaps a present I could give to The Teenager when he was old enough to understand. I promised myself I would write for a year only, until September 2013. A year with MS.

Then everything changed.

Life suddenly got more serious. I ‘lost’ my job. I was betrayed by a ‘friend’. I was in a pretty bad place. Blogging took on a whole new meaning. I joke that it kept me sane, but really, it did. The support I had was/is incredible. I used to be dismissive of the ‘blogging community’. Who needs it? I have great friends, right here, on my doorstep.

Ah, but. Connecting with people from around the world, all of us finding ways to live with this vile, cruel disease, has been (words fail me).

So, to all of you who have supported me, made me laugh out loud at your comments, sent me a cheery Tweet – Thank You. Yup, a soppy blog post…..

Tagged , , , , , , , ,