Last week my partner went away for the week to work elsewhere. The week started well and i was pleased that i felt able to look after myself (bearing in mind i had been left with meals already prepared for those first few days). I managed to do some creative things one day and it felt good. My Mum was due to come visit to look after me after a few days so i made sure to pace myself and not do too much. It was hard as i felt pretty good when not doing much. It is hard to hold back when you feel a bit better than usual! In the end i did not feel as good by the time she arrived despite being so careful, which was a disappointment but also perhaps good as she was not feeling well either. We went for my hospital appointment to see the POTS/ME specialist and then rested all weekend until Monday, when my partner was home and we all went out together for the Bank Holiday Monday!

The trip to the hospital was a struggle and i was exhausted from the sustained stimulation of navigation, bright lights, noise, talking, remembering what to say at my appointment, waiting for medications (which we out of stock after half an hour waiting!) etc etc. It seemed like we were out for hours but we were home by half past eleven in the morning. Still, it was quite a trip.

The good thing is that the specialist gave me a new drug to try for my POTS symptoms. It is to slow my heart rate. Also she took my increased pain seriously and in six weeks i need to go back (to assess how this new drug is suiting me) and she will start me on another drug, all being well, which will help with pain and also, hopefully, with my itching. That one is Gabapentin (I think, after i got home i doubted i had remembered right what she said – must get her to write things down next time, as i always have this issue) which I also read can help with deep-stage sleep; that would also be welcome!

On the bank holiday we went out to a local stately home type of property  – there were various art installations (interesting!) and lovely gardens. The sun was out and i took some photos (yet to be developed). I was pushed in a wheelchair all around and it was pretty accessible even if it took two people to push me up the steeper parts! It was a nice day, but i really can’t wait to get my own wheelchair with head-rest: my neck was really painful and did put a damper on things as the visit went on, despite taking painkillers. I was glad we managed to something fun while mum was here, as i had hoped to be able to do more as i have been feeling so much better – i think that “so much better” is put into perspective when i actually try to do things though!

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