I haven’t written anything on my blog for so long. But I wanted to update u all on what is going on. Yesterday I turned 20 yayyy!! You may ask what I did that day well in true chronic illness fashion I had an emergency optician appt, and I went out for food and coffee and went home and slept and watched some more of bullet train.
In truth over the last few months I have felt such a mix of emotions one of feeling like I finally have this chronic illness thing worked out, dread for the future, and disappointment that I’m not a nepo baby.
I would like to point out I am glad I am not a nepo baby. But every-time I’m at work, working my shifts while chronically I’ll dreaming of being a journalist and a writer writing my columns and having creative freedom and not worried about money everyday. I do get ever so slightly jealous! I won’t lie I do like working hard for things. But wow wouldn’t I like to be in Greece right now, sitting in a villa writing at a window with a view of the beach. Then at night before dinner going for a walk along the beach and coming back to a dinner, where I drink wine and laugh and listen to music. Maybe I don’t want to be a nepo baby and just dream of money who knows.
So let’s start at the beginning of all that you have missed and I have forget to tell you. Last you heard from me I was going through testing to see if I had insulinoma. At the beginning of June I went for my 72 hour fast. It was awful I started off on the specialist medicine unit, and then when I hit 3.7mmol I got moved to acute medical unit for an over night stay. So how it works with the fast is they try and trigger the tumour and wait till your blood sugar is below 2.3mmol, and see if ur insulin and cpetide is high as it shouldn’t be in a fasted state.
At this time when it hit the 18 hour mark I was feeling pretty good about this whole thing. I kept myself occupied by watching tv, listening to podcasts.
And then in the early hours of the morning at 2am I started to feel really unwell. I was throwing up, and felt really weird. My blood sugar was 3mmol and my ketones were through the roof. My poor nurse was extremely worried and managed to put me on some fluids. One thing I wasn’t told was how important it was for me to keep drinking which I think did not help.
I remember asking my mum to come early as I was so scared, Petrified I felt like I was dying, falling through the floor. And I’m not even exaggerating.
My mum stayed with me for the rest of the day, and I felt okay, just very tired. We were then moved to a differnt ward for dementia patients but they specialised in diabetes patients so they had experienced nurses.
However the nurses did not understand the test at all, and kept trying to treat my hypos even though I said they can’t. Not unless I have a seizure or pass out or go lower than 2mmol. At the time I had two lovely specialist endocrine nurses who were very sweet, and checked on me twice a day.
But for some reason the staff forgot to notify them, so everyone was a bit at a lost on what to do.
As my blood had to be stored in ice and taken to testing straight away which required a porter. So it took a bit of organising.
The next couple of days became a blur, I can’t remember much I remember my ketones getting worse. And worse and feeling worse and worse. One night I started vomiting and going in and out of consciousness, my ketones were 10 the normal is under 2! So yes very bad! I remember being to weak to even cry, and nurses trying to wake me up. In the morning the endo nurse’s came round to see me but I felt so dizzy standing and even sitting up.
Eventually I decide to voluntarily withdraw from the test, I had done some intensive googling that showed if I had high ketones then it was unlikely I had insulinoma. It took a while for them to agree, but they did. I finished the test at 60 hours out of 72. And have never been so glad to see orange juice, toast and yoghurt.
Luckily I recovered quickly, although I was very tired and weak. And was discharged that day!
I felt so guilty though, qn endocringlogy consultant came round and said he did not blame me as I had had such an awful time.
My results came back weeks later that I did not have insulinoma. One of the tests came back slightly high in insulin but that turned out to be because they hadn’t stored the blood right and hadn’t used ice.
They ran some more tests, and found out I had an antibody towards insulin, a rare condition called insulin autoimmune syndrome. Which reacts similarly to reactive hypoglycemia meaning it causes post meals hypoglycemia, but it’s because of an antibody. They still haven’t found the cause of my fasting hypoglycemia it’s possible it’s related to my stomach issues.
I think if I had to do the 72 hour fast again, which I won’t lie u would have to pay me to.
I would be a bit more prepared for how gruelling it is:
-ask if I can have salt to help my pots
-make sure I am drinking enough water and clarify how much I should be drinking
-download a ton of tv and movies (as hospital wifi is terrible)
-download tons of podcasts
-have some gf snacks for when I can come off the fast
-bring my own blanket
But other than the fast, I have been trying to catch up on life. Been on holiday to wales. Were I was amazed at how well my body held up. And even managed to lounge on the beach and go swimming which is something I never thought I would be able to do. And now has me wondering if I could handle more beach holidays?
I also met with a new rhemoutologist who thinks some of my connective tissue antibody’s are false positives. We have an interesting relationship which is I’m pretty certain he thinks I’m an anxious little girl. Where I think he’s a bit of a dick. But i respect his knowledge as he is top of his field and does get stuff done for me. His bedside manner and empathy is just not very good. In response to me telling him when my fatigue is really bad I can sleep up till 16 hours a day, he responded “well fatigue isn’t a sign of a disease”. Which is just bullshit. But so far he is doing more for me than even the nicest rhemoutologist I have ever had.
I also have a new job where I am a server/barista/bartender. I’m multi talented! I was very worried how I would handle this job. And apart from a few hiccups I have been handling it better than I thought I could. Don’t get me wrong it’s not an ideal job for me working long hours 8 + long! Working either 7-3.30 or 3-11:30, so no regular bedtime! Being on my feet all day doing 16,000 steps! Not ideal for someone chronically ill! But weirdly I love it, I love the busyness of it, I love how I can have a break whenever I need it, I love the music in the kitchens, I love feeling my hard work paying off in terms of money. And the money is pretty good! I’ve had to learn how to handle the shifts; and even then I have made a few mistakes. Here are the things that have helped me so far:
-compression stockings for my legs
-good shoes with insoles
-Epsom salt baths afterwards
-painkillers
-pots medicine every 4 hours
-drinking a ton of water (try not to much caffeine)
-electroyltes before after and during shift
-rest and sleep
-putting my feet up during break
-resting the day before or day after shift (if possible! Or at least evening or morning of)
So far I’ve not passed out or cried on shift so result! I did struggle more when the shifts are one after another!
So yeah it’s been a hectic couple of months! I am back to uni in September for my second year which I am excited about. I’ve started trying to get my writing out there, submitting it to things when I can, pitching story ideas when I can, I have even started a podcast (check it out I’ll include the link here!) https://open.spotify.com/show/5fmNOslmIKt2pV5gqTN9IE?si=aQEgczidTzmGZibX7RJrYQ
I will be scaling back on some of my posts on here. They will now be mainly life updates. If u want to read more of my writing check out my substack (link is here) https://open.substack.com/pub/thepinkscribbler
Thank you all so much for following along my journey for 2 years! I actually can’t believe in November it will have been 2 years since I started this blog.
I remember starting it because I felt so hopeless and all I could do was write my feelings I couldn’t even speak them.
I hadn’t written in years! Not since 2020, where since a kid I have kept a journal which I would write it almost every day or when I could. And somehow my chronic illness started the writing bug off again. And for that I am grateful for it, it almost makes the pain and the heartbreak worth it (almost).
Anyway thank you all so much to everyone who reads this
Thanks to my mum (who doesn’t always get the time to read them but try’s) thank you for always being there for me. And believing me when doctors didn’t. For always sticking up for me and helping me when I can’t move.
Love you all so much! Can’t wait to update you all on what I get up to next
Amy x
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