feel the need to empty my thoughts, and thought here would be as good a place as any.

Woke up in lots of pain again today. my back hurts all the way from top to bottom, spreading out from the spine, under my shoulder blades, around my waist, over my shoulders, up into my skull. this pain seems worse recently, though it is always present to some degree. It is also more in my arms and legs than usual, the heavy aching that feels like my muscles are clenched and i should stretch, but i don’t know if that will aggravate it and finding the right positions is hard when standing makes me so dizzy.

I have has some benefit from the Gabapentin, itch-wise if not straightforward pain-wise, a few days with just a few odd sensations but nothing that developed, plus bad for a while after a bath. A big improvement. Then the last two days i have had quite long-lasting attacks in the mornings, and a bit more discomfort at night, though not too bad. I just hope it is not creeping back in. I tried not to get my hopes up, but it feels like a blow. Now i wonder how reducing the anti-histamines will go – are they doing anything or not? I don’t want to have to endure more itching to find out.

Starting to worry about our holiday. Less than 3 weeks to go and i wanted to be feeling better than this. Obviously. Had hoped to get out and about more this summer but it feels like it is slipping away while i battle these pesky but surprisingly incapacitating symptoms on top of the usual fatigue etc. I do now have a wheelchair which is comfortable, and have been out for a little trial run around the local streets and my partner is happy with how it feels to push. I hope we can get out to use it as it took three days to feel able to do that 15 minute “walk”.

I know that i will enjoy my holiday and will have fun during my better moments. My friend is coming to join us for part of it and i only see her once a year and i can’t wait to see her (though she will need re-training now that hugs are so painful if done in the usual way!). It will be good just to hang out, but i suppose i cannot help but want to do a little bit more. I have seen some boat trips that go to a nearby island, for example. I would really like to do that. They say there is a disabled-friendly path on the island, so maybe my wheelchair will go on a boat! Maybe i am being unrealistic. The thought of getting on a boat right now is not apealing, but perhaps my body will comply when the time comes? Sometimes these things come off… but will the rest of the holiday be worse if i do a big thing like that? Can i just have a week where i don’t have to face these conundrums? no? i thought not.

One thing i am really looking forward to is sitting somewhere and doing some drawing outside with my friend. She has agreed to come with me. it will be fun to sketch with a friend. I am pretty sure i can manage that.

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