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.Β  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.
    Screenshot-2017-12-11 Alex ( alex_c_mcewan) β€’ Instagram photos and videos
  • 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.Β  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

x x x

The good sort of pain…

With all of my back problems (my slipped discs, my scoliosis) and of course the Psoriatic Arthritis in my pelvis and feet (did I mention that already) πŸ˜‰ I haven’t been able to work out properly for the last couple of years without being in immense pain. I’ve been doing Physio and Pilates which helps for sure, but cardio in particular has been a no-no for me especially anything where I have to be stood up on my feet.

My two main disabilities really work against each other sometimes. They tell me the best thing for keeping your spine mobile is exercise; yet I can’t excercise because I’m in so much pain with my arthritis – especially with it being in my feet/toes. Sometimes, when the PSA pain is so bad, I can barely move without being in agony, which results in my back pain escalating because I’m not able to be as mobile as I should be to keep my spine in check. So ridiculous.

BUT… I got the all clear a couple of weeks ago to be able to go back to the gym – yaassss! I am still limited to what I can do – I can use the cross trainer and recumbent bike for cardio, and lots of the weights. A benefit of all my core work from rehab physio is that my posture is SO much better than it used to be, which also helps get the best out of my workouts. To top it off my local gym has got a huge space for mat work on the floor with all the foam rollers, weights and bosu balls I could dream of.

I’ve been really poorly for the last three weeks with a nasty chesty cough infection which just won’t go away. I’ve been trying to ignore it and hope it’ll piss off but it’s going nowhere fast; so this week I gave in to it and have taken time off work for the rest of the week. It’s easy to forget I have next to no immune system! So any sign of the smallest infection from someone and I’m taken down almost immediately (I can thank the mtx and humira for that!). If I don’t take time out to really rest and do what my body needs me to do, I won’t get better.Β  I also have plans with different friends/family for the next four days in a row – and unlike my ‘normal’, ‘healthy’ friends, I have to plan for that and make sure to take things easy in advance.

Having been locked up in the flat all day by myself and not uttering a word out loud to anyone, I was starting to go a bit crazy. So I decided that, despite feeling shitty, a workout would do me good.Β  I dusted off the gym kit and met Wayne after work and we headed over to the gym to get inducted and stay for our first session.

I genuinely never thought I’d be excited about going to the gym… I had forgotten how good it feels when you leave after a successful workout. And you know what, I genuinely am really looking forward to that good kinda pain and soreness you get the next day when you wake up…

Bring it on!

Joey
xxx

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The difficult fourth post

So last week I finally had the guts to share this blog. Honestly, I was really scared. Most people I know already know the headlines of what I’ve been going through recently with the PSA. It’s not quite the same though as writing everything down into actual sentences. Actual facts. All out in the open for all to see.

I was really touched to read all of the comments from people – I’m not embarrased to say that I cried at almost each and every one of them! I’m a softie I know. But just knowing you’re not alone is so lovely. So thank you.

This week has been full of positives –

Firstly – my Humira injections came through! Halle-bloody-lujah. This Friday I’m off to the Rheumatology dept at Guy’s Hospital to get taught how to do the injections myself. I’ve been told by many people not get my hopes up – there are a few different types of biologicals and I might not be lucky with the first one. But I’m not one to be pessimistic about these things – if I was I’d have given up long ago. I’ll keep you posted on how Friday goes.

Secondly – I did something for me this week. I’ve wanted proper hair extensions for years now. Having good hair is the ultimate confidence booster. And boy do I need one of those where I can get one! With the Chemo, my hair is really weak and it just isn’t growing at the moment. I finally decided to splurge and get a full head from my lovely hairdresser, Steph. I booked a day off work and had a full on pamper afternoon on Monday with Steph. And hey presto I have hair down to my waist (well, almost!) .

When life gives you lemons, flick your hair in it’s face…

Joey

Xxx

Here goes…

I’ve finally done it… I’ve got my own bloomin’ blog! I have been pondering setting one up for so so long. For reasons I’m still not 100% sure. I mean, there are so many I should probably decide on just one (or in reality, I know for a fact I’ll touch on them all):

  • To share my experiences. Are they that interesting? Really? I absolutely doubt it. But I’m almost 100% sure I’m not alone in what i’m going through… so I’m hoping to connect with like-minded people with Psoriatic Arthritis (PSA) or any other chronic disease.
    I also want to share what it’s like to have PSA. I will not be playing the victim, that’s not my style, but if I can help educate others what it’s like and how to understand those of us with PSA and our struggles in day-to-day life – well, that’d be something.
  • Therapy. They say writing down your feelings can help relieve stress and give a sense of calm. I’m not sure that many people will ACTUALLY be interested in what I have to say. But what the hell, it might just help me. Let’s see.
  • Ride the emotional rollercoaster. Some days are great, some are shite. Let’s see where we end up.
  • Fad-tester. I. LOOOVE. A. FAD. And I’ll buy ’em all. From physio equipment to healing crystals, veganism to accupuncture mats and silk pillows. I’m openminded and always on the hunt for more!

My name’s Jo. Joey/JoJo/Joanna (only when I’m in trouble). I’m just about to turn thirty next month and I live with my boyfriend in Crystal Palace London. It’s a bank holiday Monday afternoon, and I’m sat on my rug, LouLou (Louis Walsh once sat on it – don’t ask!), cup of coffee in hand, trying to work out where to start.

Here goes…

Joey xxx

me