Month: Jul 2019

Purpose is the best medicine…

I’m heading back to work tomorrow. Given the rocky ride in recovery from Lemtrada this time around, I’m surprised. But once the rash finally calmed down I felt the best I have since having the treatment. And although I’ve loved reading excessively, now seems as good a time as any to get back to whatever my version of normal is. And I was only half joking when I told my manager I wanted to come back to work because air-conditioning. Seriously. I’ve been hot for about three weeks and can’t seem to cool down. The recent record breaking highs haven’t helped with that in the slightest!

In all honesty, the reason I knew that I was ready to go back to work is that I felt called to start sending distance Reiki again to friends in need. And that brings me to the point of my blog.

Purpose.

Having a chronic illness means you’re all too aware of one thing. A cure ain’t rocking up anytime soon. So that means unless some genius comes up with one, you’ve got this forever. It’s irrelevant whether your disease gets worse through progression, or if it’s simply subject to flare ups, it’s a nasty uncertainty to live with.

There are two choices you can make about that uncertainty. You can sit and wallow and wait for the next relapse, flare up or new symptom to appear. Or you can get on with life. Distract yourself from that unclear future. Live in the present. Define your purpose.

I can honestly say that when I found Reiki, I’d never felt better. And in so many ways, that was absolutely because of the healing energy. But equally, it was because I had found a distraction, which in turn became a passion and purpose. And although I haven’t had the energy to be sending healing to myself, never mind others whilst I’ve been recovering, I’ve found that escapism in a book has been the ultimate tonic when I’ve been unbearably itchy.

You know what? We all have a right to whinge and wallow when something shitty happens. It’s healthy. But what isn’t, is if you can’t drag yourself back out of the place. And finding a hobby, passion or purpose absolute helps in combatting that.

MS Sessions

So, I’ve just done something exciting. I’ve just submitted an application for the MS Sessions in Bucharest (capital of Romania) at the end of October this year. Billed as a festival for people with MS, it’s a two day event for young MSers across Europe. (YOUNG!!! I thought I’d said bye that description once I hit my 30s. I feel like I’m not young, but I’m not middle aged either). Anyway, as usual I’ve digressed. The two days are filled with talks from leading experts but is also a networking event for people under 40 with MS. The idea is that they equip you with tools to be able to go back home and take it back to your local MS community, or start one up if there isn’t one.

It’s all funded as well if your application is successful. Today was the closing date (I only found out about it from another MS buddy I’ve met through online communities so cutting it fine!) and I’ll find out if I have been successful during the first week of August.

Anyway, in other news, I’m still battling a rash and I’m still absolutely shattered if I try to do too much. But I am in brighter spirits again despite having three cold showers or baths a day to ease the itch! Despite my trip to the doctors last week getting me a different anti-histamine to try, it doesn’t seem to have done anything. I do have some Menthol Cream though which is quite honestly amazing!

My team at work sent me flowers last week so on a day I was feeling extra sorry for myself, it put a massive smile on my face. They look beautiful today as they’re all starting to bloom.

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I’ve also been thinking about where to take this blog next. I’m thinking about a series which talks about the different symptoms in more detail and explain how it impacts me daily, but also get feedback from other MSers too.

If there are other MSers out there that would be willing to share their story which I’ll do “interview style” on here that would be awesome too. At the moment, for the most part people are just getting my take on what MS is like. We call it a snowflake disease (no, not because we’re pathetic and delicate!) because no two people experience MS in the exact same way. So it’d be great if others would be up for having a chat. If yes, just drop me a message in the comments.

So, for now, watch this space for updates on whether I’m successful in my application for the sessions, and the direction my blog is going next!

 

 

 

Just when you think things are getting better…

It’s been a couple of weeks since I posted about my experience of Lemtrada Round 2 and now seemed like a good time to check in. Mostly because I’m sat in the doctors waiting room (again) with little else to do.

So last time I wrote, I ‘probably’ had cellulitis and the rash wasn’t abating. Since then I’ve had a course of penicillin which seems to have done the trick on the cellulitis.

Thing was, I was taking 25 tablets a day and quite frankly the thought of another tablet made me want to throw up. So despite the rash, I decided that just for a day I’d knock the anti-histamine and paracetamol on the head. As it turned out, the next day the rash did finally subside so I didn’t bother taking them anymore after that.

On Monday however, my itchy scalp (remember that from last year?) started, so I figured I’d just take another one of the anti-histamines that I was prescribed in hospital (chlorophenamine, which is basically piriton). Within minutes my skin flared up. I broke out in hives almost all over my body. The very same rash I’d had that I was trying to combat.

So the medication I’d been taking to beat the rash was giving it to me. Oh the irony.

Much to the amusement of many of my friends on Facebook, after a bit of googling for home remedies on Tuesday morning, I had a bath in porridge oats. It has anti-inflammatory properties and much to my surprise really helped. Once I was out I slathered myself in what was quite frankly an offensive amount of aloe vera gel and ended up spending the majority of the day sleeping.

By Wednesday, it hadn’t shifted. I popped into a local Pharmacy which suggested trying a different anti-histamine but nothing has changed. If anything it’s got worse.

Overnight has been horrendous. I’ve never sweat or itched more. It’s unbearable and I’ve now given up on waiting for it to ease on its own and am now sat waiting to see the doc.

It’s definitely not been easy this time around.