I am very busy at the moment, which is lovely. I’m going to start with something that has come as quite a shock. I have been having problems with my ears for a good few years now, and so got referred to an audiologist at a North West centre of excellence. I have been on sprays and god only knows how many other things, and if I am honest, I was expecting the specialist to just put me on another one and send me on my way. However, I had a hearing test which found that I need hearing aids. They think that my hearing loss has been caused by my ongoing nervous system disorders, and the only treatment that they can offer me is Hearing Aids. It is the first time that mum and I have sat in stunned silence after receiving a diagnosis. With my others they have been so expected because they have been so severe. Other diagnosis’ have been a relief, like we can build on that solid information, but this feels like a huge punch in the stomach; and is definite confirmation that no nerve is safe inside my body! I have noticed I can’t hear in groups, and that I have to have my television on louder than most, but it just hasn’t been a priority in the grand scheme of appointments. If you see me out and about I’m not sure if I am ready to talk about this yet (if you don’t want me to turn in to a crying mess that is), but give me a week or so and I will be back to my normal positive self.
This week I am blogging from the Words by the water festival in Keswick. They have very kindly given me a pass, so I am going to be learning a lot from the huge array of speakers. I will be blogging on the festival blog, so will share any links on social media. I was invited to the festival launch last night, which gives me a very positive feeling for the rest of the week. I came to the festival last year, and learned so much. Last year I could only attend the weekend events, but I am now in the fortunate position that I don’t have anything fixed Monday to Friday, so can stay all week.
If anyone reading this has gastrointestinal issues like myself, I would love to point you towards Hannah Witton’s channel. Hannah recently got a stoma bag due to her Ulcerative Colitis. Her positivity in the face of such a daunting life change has been really inspiring to me. When I say inspiring, I do not mean this in a ‘person who lives with a challenge is amazing because they live with a challenge’ way; I mean this in a ‘person has a life changing condition but starts a conversation around the issues’ way – because lets be honest – If we had heart failure, or liver failure or if any other organ was failing we would feel no embarrassment in sharing the ins and outs, but because our conditions manifest themselves in the bowel it can be difficult. Hannah tackles the subject head on in her video called ‘I have ulcerative collitis’, with the thumbnail ‘lets talk about poo’! Hannah has helped to take the fear out of having a stoma bag for me. At some stage my condition will probably deteriorate to the extent that I need a colostomy or ileostomy, but seeing that while things have been difficult they have been manageable makes me less anxious about the future.
While I am shouting out YouTube channels, Jessica Kellgren-Fozard has taken the unknown element out of me needing hearing aids. I would thoroughly recommend her videos on disability and illness as they are so informative, and just generally friendly. She also makes videos on hairstyles which have been a life saver for me, as they are designed for the days when I have no energy.