When Every Day is a Pyjama Day…

…It’s not as much fun as you might think.

For most people a “Pyjama Day” is a day when they have nothing they have to do or get done, no reason to leave the house and so they enjoy the luxury of lazing around in their night-clothes.  For me a PJ Day is one where I have the choice of getting out of bed and getting dressed or getting out of bed and making it downstairs because trying to do all three will leave me incapable of doing anything else for that day and perhaps the next.  I have been having more PJ Days than usual recently.  The combination of the FMS – Fibromyalgia Syndrome – (with associated other symptoms) and the additional pain from the sciatica leaves me more fatigued than I have ever been.  An odd side effect of this is that I have actually bought and started wearing PJs!  I haven’t done that since I was about 14 years old.

My morning starts, if I have actually managed to get any sleep (that’s a whole post by itself), when my husband helps me to sit up at around seven am.  He puts a small handful of pills into my left hand (er… current count is six individual tablets/capsules) and a glass of water into my right.  I take the lot in one go.  Then he helps me lie down again so that the drugs can start to take effect and reduce my pain levels a bit before I have to try getting up.  Then he leaves and heads to work.  Sometimes I am able to get out of bed by around eight or eight-thirty, but there are days when I simply can’t do it.  Or I will manage to get out of bed but am in agony by the time I make it to the bathroom.  Some days I’ll fight that by taking extra Tramadol (I am already on the maximum daily dose, my GP is aware that I am taking more but won’t prescribe anything stronger) and try to keep going despite the pain and associated fatigue – especially if I have made a commitment to do something, I hate letting people down – the next day I remember why I’m not supposed to do that… it’s as if I “borrowed” the energy from the next day and so I’m hit more than twice as hard and can then be “flattened” and “spoonless”* for a couple of days, usually with the added joy of a migraine.  But on those really severe pain days, I pretty much fall back into bed, flip the heating pad on and try to sleep through it.  On the more average days, and PJ Days, I make it downstairs by nine am, flip the computer and the kettle on, say hello to my lovebirds (let the youngest, Sketch, out for a fly around and some time on my shoulder – she has no mate and is bonded with us instead), and spend the next few hours alternatingly between being at the computer writing or playing World of Warcraft, sitting in a different chair reading, lying down flat on my back and, on really good days, pottering about the kitchen cooking and baking.

Since I developed severe bilateral sciatica 18 months ago, my PJ days have increased markedly along with the increase in pain levels.  And, as the specialist is reluctant to operate (because of the added complication of the fibro “…the combination[…] does not predispose her to having a predictably excellent result”) and my GP won’t prescribe me anything stronger than I am already on (OMGWTFBBQ!11!!111!!!!!eleventyone! I might get dependent on them…. you mean more than I already am on my current handful of drugs that I take every two hours?) , I suspect it will remain that way until my two prolapsed and slowly leaking discs have been totally squeezed out from between the vertebrae – pressing on my spinal column the whole time – and the stuff is absorbed or whatever happens to it and I just have three vertebrae sitting one atop the other with no shock absorber between them and even more limited flexibility in my spine**.  I expect nothing helpful from the Pain Management appointment that I have been referred for (an “urgent appointment” took them 2-3 weeks to send me the letter asking me to call and book, then the first appointment available was another 6 weeks away).  I’ve read their booklet that they give to patients and the only thing in there that I haven’t tried in the past decade or more is “Making yourself feel better by lying to yourself about how you are actually feeling” or, as the professionals call it, “Cognitive Behavioural Therapy” (or “Neuro-Linguistic Programming” – they seem identical to me).  If it works for you… great, terrific, I couldn’t be more happy for you.  But all it does for me is trigger thoughts and feelings of violence and anger by making me want to smack the person telling me how to think and feel… that might make me feel better, briefly.

I need more spoons.  And a new body.

* The Spoon Theory was written several years ago by Christine Miserandino and is the simplest and best way I have ever found to explain how people with chronic pain deal with their lives.

** The specialist suggests that many people with sciatica “suffer for many years and then find the pain has gone” of course, that’s 10-20 years later in most cases

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