OK, not much of the light / amusing / crafty variety here - I am comforted that people DO read this blog (not sure 'comforted' is the right word - whatever the word is it is lovely, and thank you). But please feel free to skip this post as it is really more a personal record for me. In an ideal world I will be able to read this again a few months down the line and see improvements in my health. So do skip this post entirely if health issues bore you rigid!
Right - I haven't been online much for the last few days, and things have been bad enough for me to need to record them, as I say hopefully there will be an improvement soon.
On Wednesday I was hoping to go and meet a very lovely friend who was having a holiday of a lifetime, travelling from America to do a whirlwind tour of Britain. She was spending a night in York, which is so close to me that it seemed bonkers not to meet up - she rang me and even offered her room for the night to save me travelling home.
But I had to turn the opportunity down - I am babbling and this is probably all out of chronological order but hey ho.
This is how my world goes at the moment.
Night time - a handful of assorted tablets. Painkillers, tablets to help me sleep (not the actual sleeping tablets - I take those maybe three times a week), tablets aimed at the RA. A warm bed helps but going up stairs to put the electric blanket on, then down, then up again at bedtime is too much so I usually put it on as I climb in.
The 'norm' is to toss and turn for anything, hours sometimes (2am ish) until I manage to nod off. Then the dreams start - every night, dream upon dream - very vivid, very clear, often nonsense, often horrific. More often than not I wake up several times shouting or panicking. It is rare to get a full night's solid sleep.
I still tend to set my alarm, usually for 7.30am - trying to keep some sense of normality. On a good day I can get up and downstairs carefully but Ok. Most mornings I have to plan it in advance - what can I grab to wear, do I need anything from upstairs, is it the sort of day when I will be back in bed soon so should I leave the electric blanket on?
My stairs are twisty and steep, so it's a case of gripping the banister and taking it slowly - I usually throw my clothes for the day downstairs so I have my hands free. Classy eh.
I won't detail the entire day because I KNOW how bad it can be.
It's slow. Very slow - when the pain is bad, as it has been lately, I lie in bed and the tears trickle like some wimpy olden days girly. Someone online described it as 'someone sawing slowly through your bone, and just when you think it HAS to stop it all starts again' - dramatic yes, but it's true. The pain is incredible - my hands, arms, elbows - it's the sort of pain where you cannot specify where it's coming from as everything hurts so much. And it doesn't stop. Tramadol eases it (and zonks me out which is wonderful), but I am only allowed 3 a day. The sheets hurt my hands, I can't roll over in bed, can't get comfortable anywhere. Hot water bottle helps (or the microwave one I use as I can't use a kettle safely) but once it goes cold that's it as I am stuck in bed - do I risk getting up and doing the stairs when I am woozy? Arggghhhh!! I once rang my mum because I was past myself, but then felt really guilty as there's nothing she can do and I know she worries so much about me. She always says ring absolutely anytime just to hear a friendly voice.
Then there is the tiredness. Not just 'tired' but utterly drained, the sort of tired that hits you like a big wall and all you can do is sit or lie down and let it do what it wants. I have ME as well as the fatigue that comes with RA, lucky me.
If I have things I need to do - exciting things like the post office - I tend to do even more sitting than usual. I don't have much energy and am learning to be careful with what little I have. I have to thiunk ahead - if I have a hospital appointment on the Wednesday, is it wise to go out on Tuesday? Planning anything for the Thursday is out of the question. A hospital trip means straight to bed afterwards then a very quiet day - pathetic isn't it, the hospital trip becomes a day out.
So the trip to York - see, I mentioned it for a reason! Travelling on my own to York, with an overnight bag, sleeping in a hotel or travelling back again the same day - the after effects of either would not be good.Wednesday ended up being a tough day and I spent most of it in bed. Physically crap and mentally pissed off.
Tomorrow I have scans on all my joints at hospital - pretty straightforward, but because they will be manhandling my bod I know it will hurt (if not at the time then afterwards) and I know I will be shattered. Buggerit!
That's morte than enough for now - I haven't even started on the bloating and weight gain from the medication / immobility!
Anyone who has this bloody illness has my utmost empathy and sympathy.