Tag Archives: remission

Aug 24 2013
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Blogging

Emotions….

Craig's pictureCraig is my guest blogger today. He’s just started his own blog, so check it out at www.jonnyspandex.blogspot.co.uk.

Hi, my name’s Craig. I’m 27 and from Leicester, UK, and I’ve got MS (shock!).

Sorry if I’m sat funny, I’ve just injected copaxone in my stomach.

So, after my request for a guest blog was accepted, while I made a tea for the missus and installed MS (see what I did there?) Word, I got to thinking about what I wanted to say, the ideas just started rolling! But I had to pick one, which is like when you have to pick one thing out of several you like and want. So I’ll start like this:

Emotions. Emotions are like MS. We know what they do, and how they work (how symptoms occur in MS, not the disease itself). The issue with both is that we don’t know how to stop them. My daughter is deaf, has been from the day she was born, but it was caught fast and she got hearing aids. At 4, it started deteriorating. I knew it was coming, but the night her deaf teacher rang and told me, I cried my eyes out. I knew exactly why I was and the reason scares me. I’d lost control of the situation, we’d countered on her hearing loss with the aids but it wasn’t going to be enough as it got worse and I was powerless to stop it. Quick end to the story, she’s now got cochlear implants and is fine! 🙂

Right now I’m doing things to hopefully help with MS; I’m in control (aka remission!). But with my first relapse, it hit home at the seriousness of what I’d got, that night I lost control. I’ve still got a lingering side effect, but it’s part of me. More recently, I’m looking at situations in life more and more and imagine what it’d be like. I could actually cry at soppy films sometimes, not because Di Caprio dies at the end (hat that film!)  but because I’m relating to stories so much more. A PPMS sufferer I speak to on Twitter (sorry, Steve, it’s you!) was having an especially bad day and what I read on it made me so angry, that I/he/anyone can do nothing for it. It made me feel so many emotions but again, no on has control over it, all you can do is sit back and watch the proverbial hit the fan.

Forget all that anyway, the footy’s back!

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Oct 14 2012
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Daily Life

Under Construction

I can think of a million and one lovely things to do on a beautiful, sunny Saturday. The Teenager is spending the day with his dad and I have the house, and time, to myself. There are museums to visit, shops to look round in and I need to pick up some books from the library. So why am I dressed in builders gear, thick gloves and Timberland boots, twirling a spirit level?

The good news is, I seem to be in remission at long last and a builder friend needs a bit of help with a last-minute job. It’s all quite technical, but it involves two steel lintels, lots of cement, nails and bits of wood. If the job isn’t done properly, the house will collapse in on itself. Or something.

My main roles are chief sweeper-upper and go-fetch-from-the-van person. After a long week of office work and study, it’s surprisingly good fun, this building malarky. I think I sometimes forget how satisfying it can be to do physical work, never more so than after months and months of mind-numbing exhaustion from a relapse. Suddenly, I feel refreshingly, alarmingly, gobsmackingly alive. My arms and legs seem to be behaving and I’m actually doing something useful.

Plus, I get coffee, breakfast, lunch and the odd Snickers bar thrown in – always a bonus. When I’m dropped home, I rush to the shower and it’s never been a nicer one. I’ve had an excellent day and I feel as if I’ve had a full-body workout – another bonus. So now, as I am about to lounge on my sofa for the rest of the evening, I kind of feel I deserve it.

Would I give up the day job though? Not a chance. My friend’s last job was fixing a roof. In torrential rain.

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Oct 13 2012
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The Teenager

The Kids are All Right

The Teenager is going out to a birthday party tonight. Not so very long ago, parties were held during daylight hours, the kids were exhausted from bouncing around giant soft play shapes and they had dinky party bags to take home.

Recently, parties meant a child inviting two or three close friends, taking them to a child-friendly restaurant for tea and staying with them the whole time, then embarrassing them by having the waiters bring out a birthday cake.

Now, heading for 14, the kids want to invite four or five close friends and be left, all on their own, in a restaurant for dinner. Can they even be trusted to behave? Should we follow them in disguise or wait outside in the car with binoculars? How will their waitress cope? I’ve seen these kids on the rugby pitch and they are LOUD. And still laugh at rude words.

The Teenager had already planned his outfit by Monday. It’s been washed, ironed and hung up in his wardrobe – Fred Perry top, Next chinos. With Vans shoes. He’s actually going to use deodorant and style his hair. I won’t be able to get into the bathroom for at least an hour.

What should I do then? Well, I guess what any parent starved of babysitting does – head for the nearest place that sells wine. A good friend is in town, there are three pubs within walking distance of my house, I’m in remission and it’s the weekend. The kids will be fine.

Luckily, I’m a cheap date now  – MS has somehow made alcohol much…stronger. A couple of drinks and I’m ready to flop. And I can always blame my unbalanced walking to the loo on the MS…

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