My next corner?

My next corner?

I've just spent 10 weeks attending a pain management programme. When I started the course, I'd been having flare ups nearly every week. I'd had an array of new symptoms and I'd been off work for almost six months. As soon as I'd overcome one flare up, the next would hit me like a tonne of bricks. I'd have weeks feeling like I was in a continual flare up. I was exhausted, in pain and fed up. I'd seen a number of new consultants, attended countless hospital appointments and had an impressive range of investigations to make sure there was nothing else going on. On top of all that, my pain meds' were increased to maximum doses.

Despite all of this, I was optimistic. I was convinced the pain management programme was the answer to reducing my flare ups. I truly believed it would give me something, anything, a new technique or skill that would help in my own little battle. 

After the first couple of weeks, I started meticulously planning, pacing and prioritising my life. I bought a diary, my family were given instruction that if it's not in the diary, don't expect it to get done. I had to be firm and rigid in my planning for it to work. Later, I started taking time during the day to do some relaxation. I've tried my best to get sleep patterns under control by avoiding naps during the day. I'm doing some regular light exercise as well as regular activity indoors and I use a dosette pack to avoid missing meds'. 

Having done all of this my flare ups have reduced - to every two weeks! You might say, "well at least it's an improvement" and you would be right, but it's not what I'd hoped for. This was not the way it was supposed to be. My goal was to get back to work, to get even just a little of my old life back. Don't get me wrong, I know it's still early days and I know the programme was never going to be a quick fix but getting my old life back, well, only time will tell. 

One thing that I have got out of the programme is recognising the signs of an imminent flare up. Previously, I was just too busy to even notice that I'd be having fevers and chills, that my glands would be painful and that I'd be losing my appetite. I now recognise these symptoms as pre-flare up symptoms. This gives me time to at least plan my flare up a bit better and prepare things for my husband and kids, like meals etc. 

So now what? 

I am an eternal optimist but also a realist. I'm sure there will be further progress, but only if I keep using and developing the new skills I have learned.  I suppose I have to resign myself to the fact that this is it for now, this is how my life will be for the foreseeable future. Rather than planning patient care, I'm going to be planning my own care. This was not what I had in mind! 

It is so true about never knowing what's around the next corner in life, well If this is my next corner in life, it starts here, today!