Happier than happy but it’s been a long road [emoji4]

Diagnosed type 1 44 years ago. Had undiagnosed epilepsy at the same time that was only discovered 38 years later ( always looked like a hypo seizure ). Because of this I fell on a convector heater aged 18 and had 3rd degree burns which meant being hospitalised for 6 months. Had a miscarriage then a lovely boy when I was 30. Had the inevitable injuries from seizures and stuff, progressed onto thyroid problems too. Then diagnosed with Spondylitis and Dupytrens contracture.Then last year after 3 years of what the medics thought was neuropathy I was given opiates - horrible drugs for me. This year in June I was told I had coeliac disease and that had caused irreversible neuropathy. I’m saying this to help anyone who feels in a corner and lonely. I’ve always made a joke of it all ( ‘you couldn’t make it up could you?! ’ or ‘my records at the doctors are like War and Peace!’ ) but it’s not what we feel. Inside we feel sad, different, alone and hugely resentful. On a good day I’m really resilient but we all have those days where our readings are wrong, we are frightened we’ll be ‘told off’ by the nurse, we’ve eaten everything in the kitchen like Pac Man at 3 am, but still gone to work smiling on a 22 test with a huge headache. Talking helps me a lot. I work in a secondary school and have 4 little diabolical friends at different stages of their journeys. All boys. Two at the refusal stage, one coming out of it and one so new to it he cries when his test goes below 4. I’ve set up a little support group where we share stories and laugh about people trying to give us insulin when we are hypo or saying ‘are you having a funny do?’ ( not that funny ).I’m the school librarian so my secret cupboard doesn’t have books or magazines, just Lucozade, Dextrose, water and some hankies. I’ve not seen it all and I’m lucky to have a lovely supportive family - I just think if we share on here it’s so useful when we are down or just confused. Have a lovely evening, I’m off for a gluten free cracker with some ‘free’ cheese on it x

Juicyj said:

@conniecar fabulous post, you certainly are a warrior lovely and a great inspiration with your support group of little warriors. I think most of us have our good days and bad days but I also think it makes you appreciate the better days more when life is like this. Hope the coeliac is under control and your feeling better now ? Lovely to hear from you

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Thank you! Stared at it for ages before posting in case it was horribly sanctimonious! Coeliac messes with EVERYTHING and I’ve had a fair few meltdowns ( ‘What???? No crumpets??’ ) but if anything this year has made me value my mates and family. I don’t ever want them to think their problems don’t match mine or are irrelevant, working in a school and seeing kids come in who’ve not had breakfast, got a grubby shirt on or who just have sad lives gives you a kick up the bum. I’ve just made it sound like something Dickensian but it’s true. Looking back at some of the chaos I’ve been involved in makes me wonder how people sometimes have such steady lives? I lost my licence for two years while they investigated my epilepsy and couldn’t have a drink. I’d just started a new job in Hampshire and obviously everyone assumed I was a recovering alcoholic. Telling them what was really up would have seemed like fibbery! My lovely husband has said that if he got through a week without a health crisis from me then he’d think I’d been abducted by aliens and replaced with a double.

Juicyj said:

Had to laugh at your hubby’s alien comment !! Humour is generally what carries us through our most darkest times so keeping it intact and being able to find laughter in the darkest of corners is a real gift.

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You’re so right. Also, accidentally squirting Novorapid on my hateful sister-in-law’s risotto while I was serving up/jabbing, then catching my small son’s big, surprised eyes was a corker. Night x

Oh I’m not even a qualified librarian, I’m a photographer I think diabetes and it’s related treats can sometimes make you more determined to blag your way past employers who only see you as a potential problem. I wanted the job more than a new pancreas, true story I got told off last week as I’m one of the school’s first aiders and was rung to sort a hypo with one of my boys who was doing p.e. My nemesis ( boss ) said I wasn’t the only first aider who could have dealt with him as ‘they all have diabetes training too and you weren’t in the library where you should be.’ The thing is if a student had a nut allergy reaction or asthma attack, obviously I might not be the best gal for the job and another first aider might be,but I’m boringly knowledgable. I got there while he was rambling and looking like Dracula and the p.e staff said ‘well he’s had a glucose tablet but not got better?’ Plus he was circled by a viewing party of 30 sweaty lads all adding their testosterone and bits of knowledge - smelled like a hamsters cage in there. You know how the story ends anyway - all good eventually but he’s mine now, I tell you, all mine!!!!! Cue demonic laughter! I’m overly protective because I was 7 when the p.e teacher told me off for having glucose before the lesson, and 8 when the woman from the local Spar dobbed me in to my Mum for buying 5 sugar shrimps one morning ( that was my post swimming lesson treat endorsed by my Mum but hey, who would know? ). Pass on the message to those who glean their knowledge from the press - no one knows diabetics like diabetics themselves - fact Have a good day people and may your Libre’s be flat lines in the green zone x

mentat said:

Wow Conniecar. I've had T1D for 9 years and developed epilepsy 2 years later. It took 5 and a half years to get diagnosed. Epilepsy destroyed my life—I couldn't work, my partner became my carer... the medical system totally failed me and eventually I worked it out for myself. Now my life is pretty good. I'd be interested in connecting over PM.

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Of course. Same happened to me. My poor parents would dose me up with lucozade and it was when I was 38 that I came round from a seizure that my husband ( a nurse luckily ) said he’d done my sugars, and it wasn’t a hypo and maybe epilepsy. Unfortunately I was given Keppra, which made me very depressed so the GP took me off it abruptly, which my husband questioned,but we were told the Keppra would stay in my system for a bit so I’d be ok. 2 days later I had 5 seizures in a row and had to have emergency treatment or I might not be here.Consequently, my long term memory is bizarre. I’ve damage that affects that. My husband says I’m cheap to take on holiday as I’ve no memory of where I’ve been before On Epilim now. Put 2 stone on, hair fell out then grew back curly but no seizures for 7 years and can drive again x

Thank you so much. I bet if you all dig around there’d be similar tales. I don’t know what inspired me to write it down the other night, but the feedback has been lovely and after a tough time at work where I’ve had to explain just a small aspect of my health record to chimpanzees, I went in today humming ‘Yes I’m bloody fabulous, everyone on Diabetes UK has told me!’ Keep smiling, keep listening to other people’s stories as there’s always someone worse off, even if it doesn’t feel like you’ll meet them at the time. Diabetes and it’s guest contributors can fill three quarters of your head, but the rest can be kindness, empathy, humour and an illicit Snickers. Have a good night ️

This is me trying not to be optimistic ( Sagittarius so I am - that’s lost me some followers eh? Believing in witchery on a science site? )But I must say I’ve turned a corner with my tests, coeliac and feeling generally well. I still can’t walk for any longer than half an hour because of neuropathy, but I’ve suddenly got some energy and things back. Call it Sanatogen but I think it’s having friends who get it. All on here and the occasional one I meet at a bus stop. I’m thrilled to share stories and think it helps massively. Someone at work today asked if I had free prescriptions for my bread so I blithely told her yes, though the bread is horrible. She ranted on for 5 minutes about her IBS and how she wished she qualified for free stuff. After that length of time she still hadn’t noticed my gob was open so wide you could see my back fillings. Then someone else who’d lumped in said ‘Aren’t all your prescriptions free???’ All eyes on me then, sat with my salad that looked like a traffic accident involving an avocado, an egg, the contents of the hoover bag and carrots. ‘Yes it’s free, needles and everything!’ I trilled. Really I wanted to shout ‘come and have a go if you think you’re hard enough, *****!’ but that would have made me a Breaking Bad character rather than a librarian trying to eat a healthy dinner that she wished was a pie. Some days are weirder than others but it’s all material for my book - ‘let’s do diabetes’ ( no let’s not, it’s too hard ). Night special people x