First of all I’m going to start with the crap medical stuff. My symptoms have suddenly taken quite a dip. I am losing sensation in my right hand and some fingers in my left hand. This seems to confirm my neurological diagnosis, and the fact that it is degenerative. Even despite this, I am feeling so much better than the last time I wrote. I know it is sad, but I’m nowhere near as upset as my last post. This is because I opened a PO Box and I have been really enjoying receiving the first few letters. I’m going to reply to them today. I feel so much less alone. My symptoms have been getting worse over the last 6 weeks, but I just assumed I was having an EDS dislocation flare. I am getting stiff in the night, unable to move without strong meds, and now the sensation loss. I am in the very fortunate position that I have the two best doctors I could dream of, who are going to try and talk on Monday. One is local, and one works in a large city hospital. I’m finding writing with a pen difficult, and am trying to teach myself how to do it with no sensation. Then, my arm aches so I am struggling to do most things. I am using dictation software right now, so I’m sorry for any grammar mistakes. I have invested in a book rest, meaning I can still read easily – there is no way I’m giving that up!
My new PO BOX address is:
LETTERS TO HANNAH
PO BOX 147
It would mean the world if you had the time to write a letter. I can look at them when I am feeling down, and hope to create a pen pan style relationship with a whole host of people. (It would also be helpful if you could include an international reply coupon or UK stamp if you live here).
Over the past week I have been a bit radical by Hannah standards 😂. I have got my seconds ear piecing done, and have dyed my hair dark purple. These are things I have wanted to do for a long time, and there is no better time to do such things than when you feel a bit rubbish.
Last wednesday I went to see Lemn Sissay live at the Brewery arts centre. What an amazing guy, he pinned you to your seat, looked right at you. He had the room crying with laughter one minute, and actually crying the next. His play, ‘something dark’, proves both his strength of character and linguistic skill all in one. I was absolutely exhausted and so couldn’t stay for the Q&A, but still, all this time later think about that play a lot.
I also went out fabric shopping last week. I went to a shop that only stock one roll of a fabric and then never stock it again. It is called Colours of the Rainbow and is based in Carlisle. I went in and bought three metres of ZEBRA fabric. Why am I so excited by this? Well, people with Elhers Danlos Syndrome (EDS), are called Zebras because while every zebra is recognisable as a zebra, every zebra has a different amount of / pattern of stripes — no two are alike. This is the same for us, while we all have EDS, no one has exactly the same experiences/ symptoms.
I did a poetry reading with Lancaster Spotlight in a care home last week. It was such a wonderful experience. I think the residents enjoyed our music/ poetry/ spoken word, and it gave me so much to be thankful for. I chatted about the colour of mobility aids with one of the residents, it was quite amusing!
Anyway, thank you once again for reading what’s going on with me. It’s difficult, but it’s so much easier now that I am happy and raring to go!!