Those who have had psoriasis or psoriatic arthritis for as long as I have will know about getting into a routine and having the right mindset to fight both conditions.
You need to train yourself into applying creams at certain times, making sure you follow your treatment plan without fail, no matter what. And when other things get in the way, you must learn how to adapt your routine.
You also need to find something inside to give you the resolve to keep fighting, to get up every day and keep going, despite how tired you feel. Your mind is the key here. It just needs conditioning. Easy enough, right?
Not really! Although it’s true we need to get into the right mindset, how are we supposed to do this when psoriasis and psoriatic arthritis also try to condition your mind?
That struck me recently as my skin is doing better and my arthritis is not aching as much. In fact, apart from my hand, the aches in the rest of my body have been either nonexistent or very mild. The only problem is, I can’t seem to get out of the “insomnia routine” that both conditions got me into.
Whenever my skin and joints were particularly bad, if I awoke during the night or early in the morning, I had no choice but to move. When my skin was itching, my back was stiff, or my knees and shoulders were aching, I had to move as the pain of lying there was unbearable.
This was also because I did not wish to disturb my wife who would be sleeping beside me. Oh, and that’s another guilt trip that psoriasis plays on you. You’re the one with the chronic illness, the one who can’t sleep properly and feels tired most of the time, and yet you’re the one who feels guilty about waking your partner!
But I digress. Waking up aching and itching would always lead to me going downstairs, trying to get the joints moving and finding the painkillers in hopes that sleep might soon come back. But by this point, my brain would be wide awake and going through those dark, depressing thoughts I often had whenever my condition was particularly severe.
When sleep wouldn’t come, I would end up watching TV and surfing the net, noticing that most of the people on Twitter at that time of night were chefs. This only boosted my admiration of chefs and others in the hospitality industry – the early-starters of the world – and you rarely see them complaining.
Here is Jury, a popular psoriatic disease blogger based in the U.K., discussing his psoriasis with Aurora PR on behalf of Novartis.
Back to the present day. I have been up since 5:50 a.m. It is now two hours later, and I have not found sleep. This is not because I’m itching, tired or aching, but because it’s just something I do now. I actually laughed at myself earlier when I thought about this. If I feel OK, why not just roll over and go back to sleep?
Psoriasis and psoriatic arthritis have trained me not to go back to sleep. I find this annoying because, come about 5 or 6 p.m. this evening, I know I will be feeling very sleepy. And by about 8 or 9 p.m., I will probably go to bed.
The challenge now is to see if I can recondition my brain to not wake up so early or, if it does, to go back to sleep for a couple of hours.
Somehow, at the same time, I have to keep up with the treatment and fighting mindset. So in a way, it’s just the one part of my mind that needs retuning rather than a whole reset. But then, if I do manage to recondition my head and go back to sleep, when will I write my blog posts?
Simon Jury is a blogger living with psoriasis who is based in the United Kingdom.
The opinions expressed by National Psoriasis Foundation Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice.
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