No going back....

Finally the letter from my Consultant arrived and my GP would finally prescribe the new meds I needed to start phase 1 of our plan to try and beef up my pain relief. That was nearly a week ago so thought I'd take stock of where I am so I have a reference point further down the line.

It went very smoothly, the two co-dydramol three times a day and two co-codamol at night were replaced with two paracetamol, effectively removing all codeine from the arsenal. My morphine MST has increased from 40mg to 45mg. I had been expecting horrible codeine withdrawal but nothing. Indeed I felt better in myself, some of the 'fog' seemed to have lifted. This was going to be easier than I could have hoped!

Unfortunately it became apparent very quickly that the pain relief wasn't as good. My baseline pain is worse, the stabbing pains more potent, the burning pain hotter. They are more naggy generally, stiffer and it is even harder to move than ever. As I type this I had my first bath in a week a few hours ago. I didn't want to but there is only so long you can put up with that yucky feeling when you haven't washed properly for days. I felt 104 trying to get up the stairs, getting on and off the bath lift was exhausting and even Eric's most gentle drying could have easily have been red hot pokers running up and down the legs. Before I go further it is important to explain that what I describe is based on what I have been like on the old meds. We are going from a very poor base to something even worse.

Everything came to a head yesterday. I felt unbelievably awful, don't think I have ever felt that bad. Death would have been a very happy release and that isn't meant flippantly. I was uncontrollably hot, my legs had fallen off the scale and disappeared into a dark abyss of hell. I was exhausted, felt physically sick, couldn't move at all, head was about to explode. It was utter hell. Was this withdrawal? Was it the resultant state I would be in as a result of changing the meds? Had the morphine not built up but the codeine gone? Of course it was utterly impossible to know just why I felt that bad. I resisted the Oramorph - after all if I didn't know whether the morphine was causing the problems, adding more would just make it worse. So as always I sat it out and thankfully I started to feel a bit better once all the meds were on board. It was scary and I know I panicked when I felt at my worst. There was nothing I could do, we had to continue with the new regime, regardless of what it was doing and may do that may be worse.

Well I am writing this so things must have got better? Yes and no. I feel nowhere near as bad as yesterday so whatever it was it isn't getting worse. Hooray! However as I have already said the pain relief is worse so life is tougher. But hey, life is always tough, so what's a bit more? One thing is for sure, there is no turning back, so in another week phase 2 begins with more changes. Who knows what the outcome will be, what side effects, withdrawal etc I'll suffer. I just hope that in the end the overall effect is an improved handle on the pain with Oramorph there for when I really need it, not just another thing I take each day. 

So, forward we go into the unknown that is a major shift in medications. Fingers crossed it will all be worth it....

To do or not to do......

I must be stark raving mad. Or bonkers. At the very least I seem to have this uncanny ability for choosing to do things that play merry hell with my CRPS, rendering myself completely incapable of doing anything for days after. I am of course talking about speedway and my recent return to archery. 

As I sit here trying to write this blog post (Saturday) I feel absolutely awful. My head is throbbing, my eyes are scratchy and a little blurred. Probably bloodshot if I could see them in a mirror. Legs are red hot, with all the usual stabbing pains, burning sensations and other nonsense. I have spent all but an hour or so of the day crashed out, being completely unable to stay awake. I always play a video game when Eric walks the dogs first thing in the morning. This is something I love doing and provides a welcome distraction to the pain as I gently ease myself into the day. This morning I couldn't stay awake to play it at all. Things didn't improve...

Coming back to this again tonight (8pm) having slept the rest of the afternoon and early evening. So today has been a total washout. Done nothing to write home about. Managed about 5 pages of my newspaper after four attempts. Gets really annoying when you wake up to find you've fallen asleep, so start reading the bit you were reading again. Only to then wake up again having got no further. Frustration personified! Eric will ask me if I'd like a cup of tea. By the time he's made it I've blacked out again. 

Every time I do any archery it takes a good 2-3 days of complete inactivity for me to get vaguely back to normal pain levels plus be able to stay awake long enough to do anything like read etc. Once I get past the 'can't stay awake, legs completely off the scale' bit I then enter the phase where I feel a bit better, but not enough to actually do anything. Boredom sets in badly as I don't feel able to do anything interesting, just read a bit, do puzzles, catch up with friends on social media. Inevitably, frustration results in me doing something stupid like archery in the garden, or go out to Lakeside, like I did last week. And the week before. I'm then back to square one plus added further punishment for my 'petulance'.

It is now 6pm on Monday and I am finally beginning to feel more human again. Oh and up to finishing this post. Yesterday followed much the same pattern as Saturday, although I did manage to read some of my book and look at a couple of magazines. Stupidity raised it's head today but was foiled by a bra of all things. Sounds crazy? Well if I say I was going to do some archery in the garden it may shed some light on the reason. Hubby had put my archery bra in the wash, so that was that. Just as well really although it pains me to say it!! No pun intended...

Reading through the above just reiterates how dull my existence is. Quality of life? What quality of life you may be thinking? In all honesty it is utter rubbish by normal standards. Apart from getting up to use the commode or struggle up the stairs to have a bath (helped by Eric of course) I am a prisoner in my reclining chair. Life is a never ending cycle of trying to recover from doing anything or preparing myself to do something. I get payback from CRPS regardless of how trivial the activity I do. Having a bath leaves me struggling with the flare up. Doing 15 minutes of 'exercise' on the Wii, essentially just waving my arms around whilst sitting in my chair, leaves me suffering payback the next day. Sometimes I do nothing and still get punished. Go figure...

Gone are the days of sponteneity, nipping out to the shops or running some other errand. Even the most simple of activities becomes a military operation, always involving extra work for Eric in getting me ready, taking me somewhere, or bringing me what I need to do something in my chair. Everything I do is weighed up against the payback it will produce. Those trivial things simply aren't worth it, so I stay at home whilst Eric goes on his own. I have only been in the library once and that was only because I'd had a dental appointment so was in my wheelchair. I reserve books online and Eric collects them. He gets all my prescriptions, walks the dogs on his own and does the food shopping. As much as possible everything is done online because I can do that. It would be wonderful to be able to pop out,  I'd love to be able to work, or lead anything like a normal life but it's completely impossible. I'm dependent on Eric for everything. The pain and other symptoms of CRPS are ever present 24/7, it's just a question of how bad they are. Even were I to remain absolutely still, do nothing at all the symptoms would still be there.

So, returning to my opening words... Am I stark raving mad for doing things that come with such a heavy price? Or is it better to really go for it and do something I love, so that the payback is easier to bear because I had a really good time? 

What do you think?