As I stated in my previous Psoriatic Arthritis post, I have been bedbound for the last few months and only managing to visit the bathroom once or twice a week.
The outlook didn’t look good – I had escaped the diagnosis of cancer but had been left crippled, weighing around 7st, and unable to move. The damage to my joints was permanent and nobody could tell me what movement I might regain, if any.
I’m happy to say there has finally been some improvement in my strength, energy and mobility in the last two weeks – no doubt caused by all the medication finally getting back on track!
I woke up on Saturday the 16th of March in less pain than usual; I felt stronger. For the last week adjusting myself in bed had become a little easier and more frequent. Whereas before, I struggled to lift, turn or move myself even a centimetre, I could now manage it more often and with less effort.
So I decided today was the day I was going to try and get downstairs.
My bike club friends (who I hadn’t seen in months) meet up every fortnight at the bar I used to DJ at, and it happened to fall on the same day so it was a great motivator to get downstairs and have a friend pick me up on his way there. Every two weeks he would kindly offer to come pick me up but it was impossible for me to even get downstairs with my right arm and legs being so bad.
I spent all afternoon psyching myself up and gently stretching my arms and legs in preparation.
My palms were sweating all day with anxiety.
I worried about whether my body was capable of doing it, I worried about how my mind would cope with being outside, surrounded by people after so long spent in solitude – staring at the same wall.
I worried about not making it, struggling back to bed, feeling defeated and being quietly devastated in the realisation of just how disabling my condition had become.
With help, I managed to get dressed and transfer onto my shower chair next to the bed. While seated, I grabbed the sides of the lightweight chair the best I could, and ‘hobbled’ it to the top of the stairs, transferred onto a foot stool placed there, then from that onto the top step. From there I shuffled down the steps one by one on my backside, using my good arm to support me and the bad arm for what little balance it offered.
This is how I navigated the stairs in the months leading up to Christmas so I knew the slow painful descent was possible as long as my arms could handle it. They held up, and after a short while I managed to transfer gingerly from the penultimate step into a wheelchair.
I was incredibly happy and relieved! It was a huge achievement for me. The significance of it all was somewhat lost at the time due to my partner being argumentative and seemingly not interested in sharing in my excitement. That was fine though, there was plenty of time for that and the main thing was that I was downstairs.
I took a minute or two to look around the living room and kitchen I hadn’t seen in months, it was such a strange feeling.
After a great night catching up with friends, I woke up feeling fine, but I don’t think the previous night’s alcohol agreed with my stomach. My stomach was undoubtedly sensitive after all the troubles I had with it in 2018, along with the cocktail of medications I take daily. I ended up being sick in a bucket twice as I lay there all day on my own.
My body was understandably aching and needed rest, but I knew that with some luck and perseverance, I would be able to go downstairs increasingly more often. I could work towards getting my life back!
Unfortunately, the following days presented another challenge.
My fiancée of over three years decided this was a good time to throw in the towel on our relationship. I won’t be writing much about that because I like to keep my love life private; but suffice to say, this changed everything and brought with it a whole host of emotions and difficulty.
It felt like the one thing I had to live for and that kept me going, was now gone. It was a crushing blow, yet there was a huge sense of relief too, that I couldn’t quite comprehend at the time.
Either way, I knew that with or without her, I had to stay on track and keep improving physically if I wanted to find any happiness in life again.