The title? Is what I’ve been craving for about the last three and a half months. I reckon I could manage two and if you haven’t tried this variant for yourself, then do your innards a favour and snaffle one up ASAP.
Well, by the time this is posted I should be safely ensconced chez moi. I finally got the all clear this morning (1st July) - the Consultant has made it abundantly clear that I will be supplied with sufficient painkillers to ensure that I can manage things myself, this was one of the worries that I briefly made mention of in the last blog. The other was that one of my immunosuppression meds (tacrolimus) was reduced, which appeared to have triggered an immediate response in the joints of my right arm and hand.
I felt a real wave of despair on the morning I woke to find the old pains were starting to return, luckily I have a very proactive consultant who was prepared to listen to my concerns and act quickly on them. My meds were reinstated and, although it’s early days and my right hand side is still a bit dicky, at least things haven’t spread to the rest of my joints like last time.
The decision was made to send me home rather than via a physical rehab hospital, as in truth my mobility has probably reached the stage where they would have discharged me anyway. I’m signed up for the home care package which should see a physio start home visits in a fortnight or so. I don’t know if I’ll need one then, but this is probably the point at which I have to tell myself to stop being a dickhead and to take any and all help that is available. I can get around fairly jauntily on one crutch now, stairs and stamina are the things I need to work on - oh and hills, well more gentle slopes really. The slightest change of camber in a corridor or walkway gets me huffin’ and a puffin’.
I’m going to take this opportunity to remind myself not to be a dickhead and to;
- Listen to advice from loved ones, Doctors and other people that have my best interest at heart.
- Listen to my body - don’t ignore the warning signs that things are going down the khazi.
- Only take morphine for painkilling purposes, not for ‘Dark Side of the Moon with the headphones on’ purposes.
- Ditto with the oxy
- Pace myself, no diving straight back in trying to do the same stuff that I could in January.
Ok so it’s Thursday 4th July and I’ve already had two falls in two days, luckily nothing too damaging I did manage to break a mirror though and Ive learned that wearing flip flops when you walk like Uncle Arthur is not the brightest move on the planet.
I got home at midnight on Monday and guess where I am now?
You’re damned right I’m back at jolly old KCH again, this time as an out patient. Things kind of happened as I feared they would, the pain in my joints has spread to knees, ankles, elbows, wrists and hands. Not as severe as before, but hence I’m here to get my meds reviewed and my painkillers increased to Head this shit off at the pass. Tacrolimus has again been increased from 0.5mg bd to 1.0mg bd, slow release oxy is now 30mg bd and they’ve added in 20mg Prednisone od - so hitting this thing hard from multiple angles.
Fingers crossed.
