I am starting to feel better, I had a little set back on friday, with some blood in my pop again. But now I am gradually starting to feel stronger, I was meant to be going on hoilday this week but managed to get it moved back till next week to give me some more time to recover.
My new migraine prevention injections are helping alot. Even though I actually found them quite painful. But I think next time I will trying injecting it into my stomach rather than my thigh.
My POTS symtoms seem much better with the propanlol ontop of the ivabridine I even managed to go for a short run for a min with Ruby! And I didnt flare afterwards and my heart rate didnt go higher than 120bpm. Huge difference to what it was like without meds even walking to work my HR would get to 180bpm, even brushing my teeth was head spinning at 150bpm.
Things are changing for me, sometimes I get sad that I have to rely on so much medication to stay functional and upright. All with there own side effects, but currently I am just grateful that they are helping me to function.
Pregablin is helping with my neuropathy in my legs, which range from random shooting pain in my toes, tingling and numbness and sometimes a complete loss of sensation. I didnt realise how much of a difference they made until I had run out for 3 days, and boy I remebered how uncomfotable the random shooting pain was.
Tomorrow I meet a coraletal surgeon who is going to run some gastro to try and work out if I have Inflammtory Bowel disease or some other stomach condition.
I am trying to not build up to much hope, but I can already feel it rise. The thing is I know what its like to enter a doctors office hopeful that they will find answers for you, and they dont, I know how crushing that is.
But I cant help but dream, the other night I had a dream that they found the cause of my pain. And in my dream I cried because finally they found a reason, I wasnt crazy, I wasnt imagining it the pain was very very real.
Over my time as a sick person, I have recieved so much love and support from people. From one of my oldest friends from sixth form who used to google stuff for me when I was too scared and overwhelmed with my POTS dignois. My mum who has never made me feel like I failed. One of my best friends who always tells me she loves me and is proud of me and believes in me. My new friends in uni, who never hold it against me when I cancel. My friend who kept messaging me when I was in hospital really scared and alone on a friday night in a and e .
But I have also recieved alot of nasty comments, from people and doctors. I remember when I had someone I know tell me, when I said I wasnt feeling well and was not going to go out that night that I need to just get on with things and learn to exist with it. That I was annoying people by cancelling on them, or not messaging back. That I was no fun anymore. And these things stick with you, but I have also realised that doctors get frustrated and annoyed with chronically ill people.
I was reading Invisable women by Caroline Criado Perez - exposing data bias in a world designed for men. In the chapter when the drugs dont work. She describes the case of Michelle a women who for 12 years has been in and out of doctors offices and a and e with stomach pain and stomach sysmptoms. Discharged with some parcetmol and thats it. 12 years later she was dignosed with Ulcerative Coltis and now has an high risk of getting Colon cancer due to the delay in dignosis. And it begs to reason what would have happened if she had been investigated properly when she first arrived at a and e. Maybe she wouldnt have lost so much, so many years of memorys, moments, events, opportunitys and dreams, relationships, jobs. I do wonder if the doctors ever apolgised, doubt it personally. Perez goes on to state that gaslighting doctors are not one off, they are a product of a medical system whose research and teaching is designed around the male body. Perez states that these doctors "are a product of a medical system which, from roof to tip is sysetmatically discrimnatory against women, leaving them chronically misunderstood, mistreated and misdignosed". Perez then goes on to give there evidence of countless clinical trials were women are excluded from , medical textbooks lacking female anatomy. Its scary to read these stories in this book and support groups of women who have been seriosuly ill and nearly dying due to being ignored, espeically when you are living the same narrative as all these women. Sometimes I have nightmares of not being able to walk and having a doctor laugh at me and say that there is nothing they can do for me. A phrase I have heard over and over again. I wouldnt mind this phrase if I didnt then find out in the future that there was actually alot they could do for me.
The one thing that haunts me is the smirk. As soon as i see the smirk I know they are not going to treat me and I am probably going to end up crying. The other week I met a new doctor at an urgent same day appointment. He wanted to go over my medical history and as I was going over my history he started smirking and chuckling to himself. Now I try not to be defensive or jump to conclusions, but it is a bit off putting when you describe several incurebale deliberating conditions and your doctor finds it amusing. Uusally it ends with them writing a script for some random medicine and sending me on my way or worse they will start to question my dignsois. One time in A and E a doctor pulled me up took my heart rate and sat me down in 30 seconds and said well you dont have pots and laughed, and said a tickle in my throat probably made me faint ?! I could go on and on, I have so many stories like this. But the point of this to tell you medical gaslighting is real and sexism is real in the medical system and it has a real impact on the patients mental health.
My dream when I am older is to run a charity all about supporting people with undignosed chronic illness or undergoing investigations a bit like Macmillian in a sense. Having a building at every large hospital in the UK. A place where support groups are run, 1 to 1 counsellors are on hand, there is patient support workers who can lialise with doctors, go to appointments and help advocate for patients armed with knowledge of trust rules and NICE guidelines. Activtiys run such as choir, arts and craft, board games. Family support groups. Because I have realised there is a gap in support for people who are undignosed or going through invetstigations. It is incredibly stressful to go through tests for incureable conditions, but yet there is barely any recognition or mental health support for this?
Bad health robs so much from us this is something I wish people realised, it robs us of our confidence. Sometimes I am scared to make new friends because what if they hate me because of my illness? or just see me as a downer? what if I let them down? what if they see me ill? They dont see the lose of opportuniys, the fear of symtoms, the fear of the future, the fear of medical procedures, they dont see the loss, the fear, the worries. They just hear that we are in bed again, its hard to understand until it happens to you.
But I hope through reading my blog posts, you will start seeing chronic illness in different ways than your assumptions make you believe.
I am not an attention seeker, or someone who has given up. I have so many dreams, dreams that I hope I can complete, once my health is managable because I am not sure if I could safely do this until my health is more in control.
I dream of being a journaslist, and making a difference. Writing and taking photos of stories that show peoples lives, in a way that tells there authentic real story, tell storys of what is happening in the world that people want to shy away from
I dream of travelling the world, of inter railing around europe, swiming in the greek sea, eating a gluten free pastry under the eiffel tower, exploring america, travelling to new zealand and australia, going to japan to see the cherry blossom trees
I dream of writing an autobiography, full of short stories, proses, and poems, pictures and photos
I dream of one day owning a bookshop, with a cute gluten free cafe, where I run book clubs, open mic nights, writers nights, book launches
I dream of a family, having a house with a garden , with a swing in the back, and a vegatable patch, I want to foster/adopt and have a safe warm loving home full of laughter, music and the smell of good food
I dream of horse riding again, and owning my own horse again, and adopting older dogs and cats and giving them a home
I dream of writing a novel and publishing it
I have so many dreams, these dreams are why I keep trying to search for answers for my health.I want to find a treatment plan, so I can work out a plan to live my dreams. And for the first time in a long time I have hope. Hope that we are getting closer, this might be false hope. But I just cant give up on my dreams, I cant accept my detoriating health, this cant be it. Call it denial, whatever you want. But I just want a name for what is wrong.
This week I have a neurology phone call appt, appt with the surgeon, and I start my job on the 4th.
I am hoping by next week I will have some good news for you all.
PS. I am currently trying my hand at writing short stories again which I am very excited about.
Love Amy x
Thinking of you, Amy, and hoping you are able to make progress with diagnosis and treatments. Love from Barbara. xxx