April Fool

I think I can definitely say that the hope and optimism of March has been firmly snuffed out by a big downhill turn throughout April.

I am utterly knackered and am still in bed as I write this, prompted by 'what, no blog posts?' reminders from Liz T and Lee, cheers girls. I've been putting off writing this as am very much hoping things would pick up, but it's been going from bad to worse, so have had to book in to see Prof this afternoon.

Main issue is tiredness. I'm having to sleep several hours a day, sometimes both morning and afternoon, as any activity, like walking the dog, leaves me overly tired. I've managed a few nights out, but have to sleep all afternoon to be able to do it, and sometimes I get halfway through dinner and think 'ready to go home now'. A real shame as it's often the only night out for a week. And end up going to bed by 8.30pm most nights, it's hardly a wild child existence.

Think it was the steroid effect – great to lift me and make me feel like things were on the up, semi invincible, in March, but a disaster since then as I'm not managing without them. I was expecting to feel all the more well in April and now into May, but I've gone backwards at a rate of knots.

Back is also getting worse, had another MRI yesterday so will see if anything useful comes out of that, though am not holding my breath as I seem to have a lot of scans but bugger all diagnoses or actions to take as a result.

All rather depressing. It's three months since I came out of hospital and my path this time is nothing like as positive as it was the first time round. By now, last time, I was heading back to work and was feeling good. We had a fantastic holiday to Jordan and climbed up the mountain site in Petra, walking easily for a whole day. Now getting in and out of the car or up off the sofa takes concentration and is an effort.

I guess I sort of expected, and definitely hoped, that SCT would give me a large proportion of what it did the first time, but it's really not looking like that right now. Maybe Prof will have something up his sleeve for the tiredness (steroids ahoy?) but I'm not seeing anyone queuing up with a back remedy, sadly. Let alone a magic package that would let me play hockey again, I'm still finding it hard getting my shoes on, so I can dream on about ever getting my hockey stick in to a low tackle in a hurry.

Really gutting as we've got things booked as we were expecting my improvement to keep on going. Now I'm guessing I will continue to be severely limited by my bloody crappy health, rather than 'getting my life back' which I really hoped SCT would do.

And I'm looking ahead to next year too, with my 50th looming. And all the lovely things I'd so like to do with different groups of people. It puts a hell of a dampener on it already to have to think 'what might I be capable of doing physically' rather than 'what would be great to do?'. There's a mad dream about spending my actual birthday on a catamaran in the South Pacific, but I can literally see this going up in a puff of smoke, a ridiculous pipe dream that people like me just can't have.

Will see what Prof says, assuming I manage to haul myself out of bed. Just feeling pretty flat and desperate to know if anything will get better, because living like this massively sucks. For me and for those around me, also limited by what I can do.

Desperately hope there is a way for things to be better. First stop is to put a pain patch back on. I took it off yesterday as part of me wants to deny that it has any effect, and that I can do those few things I can still do, without needing a hefty dose of painkillers. But I think the reality is that it does have some effect, and I need to stick a new one on. Also pretty sad, as this will be every three days, forever. And it only helps a little, if only it could help a lot.

Balls, can hear Valentina is back with Mum, from the doctors. She's not been well, this last month either. But is due to go to Cathy's this Sunday, and boy do we need a break from carers around the house. So, had better go see what the verdict is…

Cheers all, will let you know if Prof has anything useful to say x