Fridays For Future India (@fridays_india) September
- the diabetic clinic scares me.
- i will get my gp surgery to do the bloods
- i am terrified about what they will say
- sometimes not knowing feels safer than knowing you failed.
- but i guess, getting the bloods and putting effort in means i didn’t fail
- it is a hard life. but we do what we do
My twitter feed may imply the opposite but as it turns out I do not like hating my health care professionals. I recognise they do an incredible job where they often get little reward or recognition. But the thing is I fear this recognition on my part has led to me allowing them too much leeway in situations that do not deserve it.
I got my insulin pump in 2013. August to be specific. I expected a lot more from it then I got.
I quickly put it down to my brittle diabetes.
At each hospital appointment it was expected that I knew how to fix things and so I would. My hba1c was also given as a sign that everything was ok. Looking back I realise I did not fight hard enough to be seen more often….even if the idea terrified me. I had the best HBA1Cs of my life when signed off unfit to work or study or generally leave my house. Hypo and Hyper with a few decent results mixed on = ‘look how good you are doing!’ Um. No.
My results on the meter showed everything was a mess but somehow it feels that if the HBA1c is ok and therefore imminent danger is not there…you are sent to your nurse.
I have had amazing DSNs and horrendous ones. Some of the bad ones were lack of people skills and some were lack of knowledge. It is always hard to challenge the system and go ‘yeah but?’. So often I think diabetics just drop out of the system. We don’t book another clinic appointment. We just soldier on.
Often we then find that health boards hold us to random in regards to treatment. ‘Come see this nurse who does not know, understand or engage with you before you get X insulin, new tech, pump ect’.
It is bullshit.
I had to do my own research and print of sheets of evidence to present to people at clinic before they considered that yeah maybe I was not lying about eating or thinking things and actually something weird was going on. We now call it dawn phenomenon but for years I was the ‘bad diabetic’ who ‘did not conform’ and needed to ‘get it together’ and ‘stop lying’.
I have spent the last six years being accused of not knowing how to put a pump site in. As if multiple demonstrations, youtube videos and diagrams failed to penetrate my brain. No. Turns out I have an allergy to teflon, a plastic used in many insulin pump connections. After throwing my toys out of the pram I was assigned a new nurse who tested this by giving me steel, rather than plastic ‘sets’, and my control has done a total 180.
But why did this take 6 years?
Why do doctors and nurses and other HCPs assume we are failing in our own treatment?
I know I will have my clinic appoint in a couple of weeks and that is not enough time for my steel canulas to safe my blood test. I will be informing anyone who questions me that I have not made any mistakes but the system absolutely has. Whatever HBA1c I get is a miracle and anyone that tries to come at me for it will hear me.
and it tell you more about me.
1. What was the last thing you put in your mouth?
2. Do you sleep naked?
Not often. I mean the pump is always there and therefore its pouch around my neck. Mostly in Summer I might strip but still be under my duvet. Yes I am one of those people! My parents know how not to come in and only ever open the door enough to let a dog in or out. It is Senna who is like ‘why this small gap’ *smash* and I am like…hun….hun no.
3. Worst pain I’ve ever felt?
When they tried to put my coil in without knowing me out first. I have tilted cervix. Am a virgin. Have a small vagina, vulva, and everything else anyway. My body produced no lubricant. The Doctor at the clinic gave up due to lack of natural aid and signed me off to get put under at the hospital for it.
4. Favorite place you’ve been…
Santiago Bernabeu, Madrid, Spain. Home of my boys, Real Madrid. I’ve been twice to see them play and done the tour both times. When there I just feel content. Happy. Among my peers. Language does not matter. You nudge against someone while trying to look at something and you throw your arm around to steady yourself and then you both look. When I was at my most anxious…I wasn’t there. Never there. 82 thousand people screaming and I was calm for the first time ♥
5. How late did you stay up last night?
I was in bed by 7.30pm with my migraine last night.
6. If you could move somewhere else, where would it be?
No where new. I’d just love to be able to have my own flat I could afford in the town I grew up in that Nico could come to.
7. Which of your Facebook friends lives closest to you?
My mum? 😛 My neighbour is the next door over. We gossip when the armed police raid the guy in between. I wish I was joking.
8. When was the last time you cried?
Yesterday. I heard my eternal captain of Real Madrid, Iker Casillas (currently of Porto) took a heart attack at Porto. Iker….he was a big thing in my depression years for me.
9. Who took your profile pic?
On fb it was my friend Steph in Australia. My twitter one was me as a selfie with Nico and my icon here is
10. Two of favourite films?
Monsters Inc & Return of the Jedi
11. What’s your favorite season?
Spring. Not too cold. Not too hot. Diabetes doesn’t tend to have a moment.
12. If you could have any career, what would it be?
Author of history books.
13. What was the last book you read?
Feminists Don’t Wear Pink (And Other Lies): Amazing Women on What the F-Word Means to Them
by Scarlett Curtis
14. If you could talk to ANYONE right now?
My brain just keeps saying James VI of Scotland? Tell England to ram their throne and never let us unite. But then, the world would not be this if it didn’t happen. What would England and Scotland lose development wise if too busy fighting?
I am not into talking to the dead.
The living, ….I don’t know.
Maybe an athlete that I would get up during the night to see perform and smile at when everything else seemed horrendous. To just say that.
15. Are you a good influence
16. Does pineapple belong on pizza?
Everything belongs on pizza and if people don’t like it then more pizza for you. Get an individual and stp judging people.
17. You have the remote, what is on right now?
I have a tv with all sorts hooked up in my room. I need not squabble. Wrestling or wwe or whatever else I care for in that moment.
18. Two people, who you think will do this?
Whomever wants to be a little bit sarcastic.
19. Last concert?
Fal Out Boy I think
20. Favourite type of food?
Anything that lets me experiment with herbs and spices
I was thirteen. I had gone home from school for my lunch as I did most of my high school career. As I did most of the time I had put the music channels on. I was dancing. Badly but don’t judge me. But then suddenly, was I went to put my plate in the kitchen, my cat Maxwell appeared from nowhere and I fell over him and stood on a screw. My step-dad (paw) had an ‘entertainment system’ from the early 90s. He still holds on to it. It had screws on a square platform that formed a speaker tower. But he had not screwed them into the carpet…because that would damage the carpet. But he had not removed the screws either. By a complete fluke the screw went straight through the main tendon on my right foot.
I hopped towards the kitchen thinking motherlsjrbgsr that hurt. Then I realised that no, that reallly reallllly hurt. I dropped to my knees, legs up in the air behind me and crawled to the phone where I phoned my mum at work and somehow tried to explain that I had a hole in my foot. She was, understandably, horrified. She said she would phone the Doctors and my granddad and then call me back. I remained on the floor and glared at the, innocent really, cat.
When mum called back she was notably calmer and said my grandad would be around soon and that she had called the school and Doctor and I was off to see the nurse. I remember hobbling to my granddad’s car and trying to explain what had happened. He was in disbelief. So was I. I still am, really. Who does that? Honestly.
The nurse was even more perplexed but I was left even more so when I was sent on my way with fat plasters and some iodine. I had a hole in my foot. At least at school I got a lift pass for three weeks. That meant I got out of class five minutes early and could take a mate with me. It made me very popular for a girl that was bullied the year before. I took great joy in not taking any of those cows with me in the lift. Instead I took other bullied nerds.
I could also wear whatever I wanted on my feet on accord of whatever I could GET on my feet. As it happens it was my mum’s pale blue sketchers and wasn’t as cool as I thought.
For years I kept feeling pain if I walked for a long time. Like I had a stitch in my foot. Eventually I went to the Doctors to be informed that I had tendinitis and I should get rid of any pump shoes, high heels and think carefully about anything I bought from then on in. I was gutted. I knew how bad the condition could be. My mother has it in one arm from years of being a typist and shoving the …heavy bit, back into place. I had grown up having to help her put her bra on, pick things up, carry things because she was in too much pain. At one point it got so bad it went up her whole arm to her shoulder and left her like a puppet without strings. To be told at 21that I had the same condition was utterly devastating.
I followed the advice given and other than weddings and my graduation my heels remained confined to my wardrobe. When I was at a wedding with one of my besties recently they started to hurt my tendons and generally my feet so I went into Matalan and got flat pumps that I will be careful with and left my beloved heels in a charity shop.
As time passed I have realised, with Drs, that the tendinitis has spread. My unconscious attempts to protect that first injury put more strain on the other foot and lead to the development of the condition there. Then it spread up to my ankle joints, my shins, my knees and today at 27 if I am pushed too far I feel it in my hips.
Frankly it is not respected enough. I look ok. I don’t use a cane or a chair. People think I can manage. And I am not good enough at telling people to fuck off. Sorry not sorry. When I flare it feels like I am being stabbed by that screw again, over and over again, but this time it is so many other places. I had to quit a job I loved because it was at the top of a hill and the pain of getting there was too much. I had to oraganise my dream trip around when and where I could walk. Now I am 27 people don’t give me the same shocked face and spurt out ‘but you are so young’ but I still get disbelief. I still get pity that doesn’t help instead of aid that could. I am taking the lift even if I look like the stairs should be ok. Deal with it.
All because I danced and was happy and fell over a cat.
21 years ago I was taken to down to my local GP with my mum. I knew something was off because my mum was talking me and not my granddad. My mum didn’t take me to places like the dentist or doctor because she worked ridiculous hours at a um tv company popular at the time to keep a roof over our heads, food in the fridge and a car out front to get her to work. Partially successfully. Bank holidays where I could stay in bed longer and then get walked to school by my mum were amazing and rare.
She absolutely did not take Wednesdays off to take me to the Doctor. Especially when I didn’t feel sick. Ok, so I was thirsty all the time and I craved melon like a beast and I was aware we kept walking home later and later at night because mum and gran kept having hushed conversations in the kitchen. But I didn’t feel sick. That is because they noticed so soon, before diabetes could ravage me too much. They knew the signs because my mum is type one too and so is my aunt, and an uncle on the other side. We collect them, you see?
So I sitting at the Doctor’s surgery thrilled to be with my mum on a school day but terribly confused.
“But why are we here?”
“The doctor needs to do some tests.”
“Whyyyyyyyy. I’m not sick.”
Then she looked at me funny and I went back to swinging my feet off the musty chair that was far too big for me to sit in. I always liked my GP. He did know me but he always reacted like he knew me, unlike some others at the surgery. I don’t remember what happened next other than I failed to give a urine sample and the Doctor needed one and suddenly we were back in the toilet of the surgery and I was getting sugar free ribena shoved down my throat. It was horrendous. I still cannot drink it to this day. I wanted to know why I had to pee? I wanted to know why I couldn’t have diet cola, too. I did not grow up on sweet drinks because of mum but the ribena was foul. I remember saying I was full and being forced to drink more and told to pee! Pee in the cup!
When you have a vulva aiming your pee is hard. Sorry to gross you all out but I still miss half the time, get stuff on me, and end up in a rage every time I need to give a sample. But a six year old not knowing why my suddenly weird doctor wants my pee? Traumatic. Eventually I got enough in the cup and was dragged back to the waiting room where I then got angry and bored because if he wanted it so badly why was I having to wait?!
I don’t remember what must have been him sticking sticks in it and telling mum we needed to go to the hospital in Edinburgh, for sick kids. I don’t know if he took blood. It must have been a while before we left because my mum called my father at work and asked him to come home. Wow. They were divorced at the time and to say they loathed each other is a gross understatement. They could barely hold a civil conversation. But he came from his work in Edinburgh and we all bundled into mum’s very small car and headed….back into Edinburgh.
I remember being elated that my parents were in the same place. I guess I didn’t pick up their horrid tension. I was probably too worried myself. That car ride was the first time it was mentioned that I might be diabetic like mum. I cheerfully declared that was fine. I’d get my own bottles of insulin and my own compartment in the fridge. My father sighed. But some part of me felt weird, I remember that much. The ribena felt like it was stuck in my tummy too.
My next memory of that day is of nurses trying to take blood from my elbow region. I remember I was wearing a pastel green jumper with a cat on it and A, B, C. It was my favourite pass me down from a girl at my mum’s work who had a girl a year older than me and would send me binbags of clothes at a time for years. Kept us going. I remember the only time my parents every worked together as a unit. All I had ever dreamed about in my life.
And it was to hold me down as I screamed.
The nurse was a trainee. Now, I ask myself why she was anywhere near a children’s unit and why still she was trying to get blood from possible diabetics. I was not in DKA but my veins were not exactly standing to attention either. And I was little. Six times she missed the vein. It took my parents holding me down and a more experienced nurse to get the sample they needed.
I can still remember the tears in my mum’s eyes and the horror in my father’s. He hugged her after that. It felt like the world was ending.
I don’t remember being told I was diabetic though my mum says I brushed it off as no problem. No big deal. ‘That is what mummy has?’ I had been getting her things for hypos for years. I did not realise what had just happened. Not at all. If my parents cried I didn’t know about it. My most-recent step mum came to the hospital with books. My mum brought in videos from home. I felt stabbing an orange with a syringe was ridiculous because I was not an orange and needles did not scare me. I wanted to go home immediately. I was in a ward with children recovering from DKA and wailing parents. That scared me. I felt fine. I was fine. Ish.
I was excited about being diabetic back then. I was intrigued by the blood testing meter which mum didn’t have one of! She immediately demanded one after finding out that such tech was available. I was thrilled, if not a little disappointed, to get my insulin bottles and find they were a different colour to mum’s ones. I was special. She had blue and yellow. I had red and green.
Life did not change so much at first. I already had sugar free drinks. Mum already made us the same meals and hers had to fit her insulin so I slotted in nicely. It was not until I wasn’t hungry and had to force food down that it felt odd. My father’s fear and careful measuring was difficult too. I still feel really weird when I go into a certain pub in town. Me, my father and stepmother used to go in there if they had money. She took me to the loo to do my jag and it was the first time I said ‘no, I ‘ll do it’. I was in the same place only a few weeks ago. It still feels a weird place to be even if it all looks totally different.
I didn’t feel strange until I had hypo in school over a year later. I was put in my teacher’s chair and told to eat digestives while we had story time out of nowhere. I remember enjoying my biscuits and then realising I was being glared at.
I wasn’t special anymore; I was just different.
And that started 21 years ago today.
The worst issues I have ever had with anti-depressants other than them not working have been insomnia when I start a new one. One of my very clear memories from the first time I took anything was when I started citalopram at 20mg and only slept an hour or two a night for a week. In that week I read a lot in bed and one night I read Michael MacIntyre’s book and had to muffle my cackles at 4am as everyone else slept. Other than that, nothing.
I have been really lucky that way.
Well that changed last week. My duloxetine dose was doubled and woooow. Also, I have seen a lot of articles floating around talking about how it is the worst but I am ignoring that cause hey I have it now and ‘I read this on twitter’ is not enough of a reason for my Dr to wean me off it again. Anyway. Wow. I now get what people mean when they say they feel like they are floating. It is weird and not fun. SO not fun. I felt like I was anchored to my mattress by …the bit of leg just above my ankle. And the curve just past my wrist. And that everything else was trying to drag me away. But I also felt like I was too small for the body I had. I felt I had to stretch myself and curl everything and try and fill things. I never could. All I did was strain muscles. The more muscles hurt the more I became convinced it was because I could not fill my body so I stretched more. I tossed and turned. I had hot and cold flushes that were far worse than any I have experienced with thyroidism. Honestly, it seemed more like a preview of menopause.
At one point I became convinced that one of my dogs had peed on my bed or that I had peed in the bed! I was convinced the sheets felt wet but after rambling at them for….who knows how long to be honest, I felt the sheets again and they were bone dry. Had it just been me sweating? Was it just my imagination? I have no idea.
I do know I would randomly start babbling at my dog at all hours of the day. Nico tends not to spend his day with me, preferring to sit on the stairs or on a chair in the living-room so he can watch the outside world and guard us from its evils. For those interesting days he stayed on my bed and if he did leave he often appeared at the top of the stairs and popped his head around the corner as if to check I was still alive. This matters a great deal more when you remember that Nico now struggles to get up and down the stairs. And as soon as I had heard him clamber up to check I’d hear him wander back down to see his grandparents. During the day he’d camp out basically on my head. It is almost as if he wanted to make sure I didn’t do anything too mental.
I would dream that I was made of lego and floating in ….space? A dark black space of some sort anyway if not Space space. Anyway I was floating and trying to make a lego globe of the world but I pressed too hard on to the top and it shattered so I shattered and we all died and then I spoke to my dogs about it cause….obviously?
What did not help is that I came down with some sort of illness at the same time because that is the sort of luck I roll with. Nose like a tap, banging sore head, cough like a chainsaw. That sort of thing. I coughed myself to the point of barely being able to walk because I had hurt all the muscles in my stomach and back. This added to my rolling about trying to ‘fill my limbs’ in an odd way. I would sleep for ridiculous amounts of time but could not determine if that was all from the medicine or from being sick. Things are on the up now but there is still a long way to go.
I need naps during the day. I sleep a lot at night. I don’t panic as much but I still feel rather spaced out and empty, waiting for the hours to pass so another day has gone. Pressure is starting to come in reminders that ‘they will be settling so…you have to start doing something’. There is no regard that this still not be the right dose. That I need energy to do things. That sometimes it takes more energy to stop a panic attack than to let one pass erupt from within. So I am still working on which way is up and which direction I am meant to go in. Easier does not mean it is not hard.