Sunday night karma?

There’s nothing better than a weekend of little to no plans. It doesn’t always happen, but when it does, it’s sheer BLISS.

Though it’s a real shame my body doesn’t always agree.

I had plans on Friday night with the girls, but it was dinner at mine so none of the usual required late night trekking across London to get home after a day at work (sorry girls, just you!) which is exhausting enough most of the time.

For the remainder of this weekend, I have just tried to relax; so I’ve been doing a bit of life admin, a bit of work from the comfort of my sofa and I even treated myself to a manicure today for the first time in years. Oh yes and a few hours spent catching up on the latest Grey’s Anatomy and a whole week’s worth of Survival of the Fittest (which is totally filling the Love Island hole in my life right now so I’m not even sorry 😉 ).

But unfortunately, it’s now Sunday night and I have been in agony all day, with the oh so recognisable effects of Sciatica setting in.  I get really frustrated that I can no longer spend a few hours on the sofa trying to relax my mind from everything going on because I just get punished with the most painful back ache. I’m now struggling to stand straight and I’m hobbling around like no-ones business.

I’ve not yet found a way to deal with my frustrations that come as a result of this disease, and having my back problems make it 1,000% worse on bad days. So this evening I’m just taking it out on my keyboard writing this and hoping that an evening on the mat with the dumbbells helps ease the stiffness and pray that I get a good nights’ sleep so that I’m back and better for the start of another week.

In other news I’ve got another apt with my Rheumatology nurses tomorrow – I can’t wait to tell them that I’m now off all of my painkillers (which is probably why the pain today is a shock to the system – I must have been getting cocky). But I have been having some side effects from all the biologicals and the chemo so we’ll be discussing those and seeing what we can do to reduce them. But I think I’ll save that for another post!

Have a lovely and peaceful Sunday evening, everyone.

Joey x x x


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!
  • 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) • 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 ;-).

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!


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) 😉 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.  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.  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!