The 24th & 25th; How can I explain what I’m going through when I literally can’t even speak?

November 29, 2013 — Leave a comment

The 24th of November.

And tonight I feel terrible. All of the adrenalin has worn off, my mouth hurts and I am exhausted.
I got up at about half past nine, and I spent the morning in my pyjamas, trying to feel alright. I have given up on that now. I have looked at all my photos and shown them to Becky and James who came round after lunch. I gave them their presents, then I started trying to edit/cull photos. I’ve done about five? This is going to take some time.

I tried eating dinner at half four (slow-cooked pork, mash, root vegetables) which should’ve been easy, but chewing hurts and the ulcers under my tongue hurt and it is so fucking debilitating. It is just raw.

I don’t know what is going on with my skin either – my fingers and toes are blotchy and itch like crazy morning and night, but it shouldn’t be GVHD because we started the systemic steroids. Betamethasone seems to be helping my hands so I hope it does my feet. Mommy thinks it’s chilblains. My torso is covered from the neomycin rash which now seems to have dried and scabbed, and I just don’t know what to do with it. My tummy has been hurting sporadically all day and I don’t know how it’ll be tomorrow.

I’m just drained now.

The 25th of November.

I am just going to be spending the next several days waiting for each one to be over, because my mouth is just awful. It is so raw and so painful – I can’t really talk or move my mouth at all. I decided the systemic prednisolone needed to be bumped up to 30mg a day, after looking at my diary and photos from last year when this happened. I just have to wait for the steroids to work, and until then, I shall be miserable.

I spent the day with the laptop in front of me, editing my photos. The good news is that I’ve got through them; the bad news is that’s because I had to discard a lot because I hate them. My ISO was high to combat the grey weather so my photos are grainy. They’re not fixable.

I planned on starting my Christmas shopping today but after staring at the screen all day, I just couldn’t. I still have a headache from it.

There has been a lot on TV about loneliness today in old people and all I could think was “I know how that feels”. Illness is so incredibly isolating because you can be surrounded by loving people but none of them know just how truly terrible you feel. How can I explain what I’m going through when I literally can’t even speak?

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