It’s not all bad, promise!

I’m very conscious that I’ve gotten into a habit of posting whenever things start to go a bit pear-shaped. I guess it’s because 1) that’s when I have things on my mind, and 2) there’s sometimes a misconception or two to clear up. Or maybe it’s 3) – an attempt to reach those going through similar experiences to me and will totally get it – because unless you suffer with chronic pain I’m afraid you just don’t get it. So here I am just trying to 4) vocalise my feelings and emotions as I navigate my journey through this.

Now, last time I posted I was in a pretty dire place emotionally and physically – sciatica set in (both legs) and left me unable to stand, walk or sit for a scary few days. Luckily – I managed to turn it around and was back up and partying (with slight precaution) at my friend’s wedding in Cambridge the next weekend. Over the past five weeks I’ve had four weddings! Each one of them have been amazing in many different ways, and I’m very lucky my body’s let me cope with it! I do think there’s huuuuge power in positive mental attitude and your brain’s ability to help deal with pain and healing is properly awesome.  No, it’s not going to cure us, but it helps massively in how you perceive pain, and you certainly need it to get through the bad days and get yourself out of bed, ready to fight another day and get your strength back. I’ve always been the smiler, the giggler, the one to see the good in a situation (though you probably wouldn’t believe it from reading this blog!) so I like to think I’m lucky it comes more naturally to me.

Anyway, I’m keeping this post pretty short and sweet for once, and just wanted to check in to say I’m still here, I’m having some good days, and I’m currently relaxing and soothing my joints in this LOVELY bubble bath cracking up at this book and waiting for Love Island to start at 9pm… what’s there to complain about!? ;-).

Joey

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Fail-safe planning?

The winter months can be pretty daunting for those of us with Psoriasis and with PSA. With the chilly temperatures we’re much more prone to flare ups and Psoriasis breakouts. Going from hot to cold, the early morning chills, having the stuffy heating on at home; all things which can be troublesome.

With the Psoriatic Arthirits, I’m finding the frozen temperatures affect you even more; I’m having to get up earlier to get my joints moving and give my painkillers more of a chance to kick in, and I find I’m walking slower as I brave the coldness and joint pain at once.

December also usually means a huge spike in social activities; catching up with friends to celebrate and organising and attending work parties. It’s also the busiest time of year for birthdays with my friends and family; and as most of my friends are turning 30 this year, it’s definitely a time for partying! I also have to work out where in the country I am over the Christmas holidays – with separated parents at each end of the country, and finding time to co-ordinating seeing Wayne (either in Leeds or London) who also has his own plans in London can be stressful.  For the rest of the month I probably have maybe two nights in a week where I don’t have any plans at all. An easy task to anyone else I imagine, but I do have to just be that bit more careful.

Sounds like a really tough problem, right ;-). Ordinarily, no, but add in the anxiety, PSA and generally just not knowing how I’ll wake up feeling on each day… yeah you get the picture.

I’ve had a really really good last few weeks, with a 100% hit rate for attendance! So, for my own sake more than anything else I wanted to list my highlights since I last blogged…

  • Lasted the whole night at my Christmas party. Party organising is my absolute favourite; so there was no way I was going to have a bad night there. I was determined – and ultimately managed the whole night, without sitting at all, right until ‘lights up’. Yes I may have swapped to wearing pumps from about 11ish onwards, but who cares!
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  • Spent a weekend in Paris with some of my oldest friends. We had a brilliant weekend and I was seriously worried about f*cking up the plans, especially after my last episode of anxiety in Birmingham. In your face PSA – we walked over 12k each day all around the city in the freezing cold. I couldn’t walk quite as fast as everyone else but it really didn’t matter and we had the best time.
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  • The weekend just gone I was in Birmingham again for my friend’s 30th; this time around was a completely different story to said last experience. Again, another kick in the balls to PSA. Even getting snowed in didn’t stop us from having a fab weekend, and we made it back in one piece with not a single hangover between us ;-).
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What helps me with my anxiety is the ability to be planned. I’m also having to take a few Mondays off of work in order to recover. Luckily I have a fair bit of holiday to be able to do that with this month. And it’s exactly what I’ve been doing today… heaven!

In other news, I’ve been able to lower my Methotrexate dosage by a quarter, which feels so good. I’ve also decided to take it as a weekly injection rather than orally. Mtx comes with so many side affects and I was constantly feeling so so nauseous and would have dizzy episodes now and again too.

So I’m now injecting myself weekly for the Mtx and fortnightly with the Humira.  My doctor is happy for me to start scaling back on my painkillers which I’m desperate to do. Though I might need to just wait for the Christmas period to pass and I can focus on that in January. Bring it on!

Joey

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