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Please tell me you get it too! Feeling fed up and lonely X

conniecar

conniecar

Well-Known Member
Messages
299
Type of diabetes
Type 1
Treatment type
Insulin
I've had type one since 1976 when I was 7. I was misdiagnosed with nocturnal hypos for 36 years but after a serious accident with a convector heater where I had 3rd degree burns ( hope you're not eating your tea ) my husband, who's a nurse luckily realised I was having epileptic seizures and not hypos, so I've been on medication for 3 years for that. I've now an under active thyroid and been very poorly with a critically low vitamin d level ( caused by my epilepsy meds ). I was misdiagnosed with everything from rabies to nits and told my pain was also neuropathy - my fault of course I've assumed as my GP tuts when he sees me. I'm totally fed up with it all now as I've got diabetic hand, Dupytrens, two frozen shoulders and am struggling to walk without foot pain. Not sure what my whinge is really as I'm preaching to the converted but I would love all of my consultants to communicate and come up with answers without me feeling so rubbish. Like you all I put on a happy face at work and put up with colleagues saying 'oooh I couldn't inject me self me! ' ( I love it obviously ) when really I want to squirt Novorapid over their dinner when they're not looking. I've had a right melt down today and yesterday ( went to see Jason Bourne at the pictures last night and didn't enjoy it as I just felt so weird. ) I've a lovely husband and son and that makes it worse, as I keep welling up and being a parp. I'm boring myself. As Pink Floyd would say 'is there anybody out there....?' ( sorry if prog rock reference is a bit dated, I am 47.) xxxx
 
By the way, ALL FRIENDS, FAMILY AND DOCTORS SHOULD SUBSCRIBE TO THIS FORUM ( shouty font significant.)
 
Hi @conniecar
your post just now has made all my D emotions spring up all at the same time.
I want to laugh with you , cry with you , rant at your doctors with you.........
and share some similar symptoms with you too. :confused:

had 5 operations for dups , both shoulders been froze a couple of times over the years,
diagnosed with hypothyroid 7 weeks ago , ( and prostate cancer 5 weeks ago -- but that is off topic -- LOL :D)

44 years D here in 10 days time - wahoo !!

you know you got all of the choir here singing from the same hymn sheet as you.
you just belted out a fabulous solo !!!!:eek::D:D:D

i 'm here most every day if you need a chat.

xx
 
Hi there. I am a type 2 but I get the lonely feeling when the family and friends around you don't really "get" it and the medical establishment that should be there for you are far more interested in their paperwork. What I mostly have to say as a 48 year old in Canada is that PINK FLOYD will never be dated and we are all learning to fly
 
Hi @conniecar - take some deep breaths, we all get it and sorry you are feeling down at the moment, try and focus on the positives including your lovely family and the negatives fade away. Having a positive mindset is the only way forward. Am off to see the BFG tomorrow, hopefully will eat some popcorn and not try and raise my BG too much !! Sending you a big hug, stay positive x
 
To everyone that replied....... Thanks so much. My husband said today ( amid me wailing ) that maybe a counsellor might help? But this is what we need, it's empathy and practical advise from people who know exactly how it is, day to day. As you all know, tomorrow will be different and we all have to haul ourselves up again but you have all helped hugely. I'm a bit guilty of making a joke of 'all my conditions - oh it's such a laugh!' when really I just want someone kind to say how hard it must be ( but that would cause more wailing). Also I've been out for a rum and a packet of crisps with Eliot tonight, and felt quite normal really, until I went to pay and saw the horrified look of the bar maid as she clocked my gnarly, bent fingers what can you say?! As far as she's concerned diabetes just means an embargo on meringues and the reason why she can't get in to see her GP. As an extract from my diary ( New Year's Day 1976 ) said ' I'm in hospital and have had loads of pricks!' On that happy note, goodnight all
 
Hi,

I saw a Bourne movie once & didn't enjoy it..
I was also diagnosed on my 8th birthday in 76.

My right shoulder is giving me gyp recently.. But that's where the "little devil" sits tempting me with the bad stuff.. (Mainly punk & Metal.) ;)

I'm using painkillers on the shoulder to get me through the day, "comfortably numb."
 
Ode to a defunct pancreas 'wish you were here.' Oh how we laughed Must have been something in the air Christmas '76, everyone goes on about the heatwave but I just remember eating a selection box on Christmas Day, then being taught to weigh bread on New Year's Day. Soon after the hospital gave me a 'gun' that you loaded your syringe in ( only the weight of a nuclear submarine) and it handily fired the syringe at your skin. Who invented that, can't have been diabetic? One go, ok but every time? Also remember the urine tablets and shouting 'mum it's blue, can I have a Digestive?' from the loo. Happy days xx
 
you had a syringe "gun". -- you must have been posh !! LOL

be thankful it wasn't a year later and your memories are of disco classics
like "you should be stabbing" and "Le Freak" and Night ( hypo ) fever -- LOL
 
conniecar said:
Ode to a defunct pancreas 'wish you were here.' Oh how we laughed Must have been something in the air Christmas '76, everyone goes on about the heatwave but I just remember eating a selection box on Christmas Day, then being taught to weigh bread on New Year's Day. Soon after the hospital gave me a 'gun' that you loaded your syringe in ( only the weight of a nuclear submarine) and it handily fired the syringe at your skin. Who invented that, can't have been diabetic? One go, ok but every time? Also remember the urine tablets and shouting 'mum it's blue, can I have a Digestive?' from the loo. Happy days xx
Click to expand...
I do remember the heatwave. I was diagnosed in the summer. The memory of practicing to inject on an orange.. I couldn't wait to do it for real!
 
You had a syringe gun?? Wow you were lucky. I had to inject myself with a pointy stick. And I was grateful for it as well :)

Seriously though "we" all get it. I'm a T1 baby at 33 years service compared to some people here but it's like a big stone we carry around. I've currently got a frozen shoulder (started I n November last year) which although not bad is causing me aggravation despite steroid injections and months of physio. I have had it so bad in the past on both shoulders I have been almost disabled for several months.

But you just have to get on with it don't you? I'm lucky I don't have a huge list of other medical problems but I really feel your pain. Mother dropped the bomb and broke my balls on this one. High 5 to Floyd.
 
Sorry to hear you are having such hard times. It's really difficult when medical practices don't communicate and can get very frustrating having to repeat everything over and over again but try and take a breath. Maybe a counsellor will help to deal with all the emotions or even just chatting on here with people is great as everyone is so supportive . Just try and stay positive sending hugs x
 
I haven't tried a counsellor so I don't know how helpful they would be.

I've recently started meditating and am finding it useful: for reducing stress and generally accepting things (my medical conditions) as they are, not getting depressed and not worrying about the future.

I started off with a free smartphone app "Headspace" then switched (after the free trial ended) to Buddhify which cost a one-off £3.99.

I've also just purchased a book "Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing" by Vidyamala Burch, Danny Penman. It won an award in 2014 from the BMA and is supposedly recommended by the NHS. I've only just started it, but it's very readable and is based around an 8 week course. (There are hundreds of recommendations on Amazon.)

Shine on you crazy diamond
 
Jaylee said:
I do remember the heatwave. I was diagnosed in the summer. The memory of practicing to inject on an orange.. I couldn't wait to do it for real!
Click to expand...

I had to practice on the oranges as well; all the fruit in my house has very low blood sugar to this day. Did you have an enforced hypo in hospital too? At least they were trying in those days.

@conniecar : I don't know if you are following a low-carb diet but a very low carb ketogenic diet has been shown to be beneficial for epilepsy and is, by its nature, excellent for diabetes. Have a look at it if it's something you aren't doing already.

http://www.drperlmutter.com/new-study-validates-ketogenic-diet-epilepsy-treatment-adults/

http://www.ketogenic-diet-resource.com/ketogenic-diet-plan.html

Best

Dillinger
 
Dillinger said:
I had to practice on the oranges as well; all the fruit in my house has very low blood sugar to this day. Did you have an enforced hypo in hospital too? At least they were trying in those days.
Click to expand...

Nope. I have no memories of enforced hypo in a controlled environment. Just a "Peter & Jane" have diabetes style book with the boy getting into all sorts of typical D scrapes, while the girl was doc's little pet..
Oh, and told to "eat something if you feel funny." That's it.
My diabetes "care package" when I went back to school was souly in the hands (or pockets.) of an 8 year old.. Lol Orange was bad, blue was good.
 
Jaylee said:
Nope. I have no memories of enforced hypo in a controlled environment. Just a "Peter & Jane" have diabetes style book with the boy getting into all sorts of typical D scrapes, while the girl was doc's little pet..
Oh, and told to "eat something if you feel funny." That's it.
My diabetes "care package" when I went back to school was souly in the hands (or pockets.) of an 8 year old.. Lol Orange was bad, blue was good.
Click to expand...

I remember the science experiments for finding out what your blood sugars were 3 hours ago and the hefty glass syringes. When I was in hospital on diagnosis one of the nurses said that a small Quality Sweet type sweet had 20 carbohydrates in it. I remember then, as a 10 year old, thinking 'this person doesn't know what they are talking about'. Plus ça change?
 
Dillinger said:
Did you have an enforced hypo in hospital too?
Click to expand...

Wasn't allowed out of hospital until I had a hypo, in the end they forced it so that I knew how one felt. Funny thing is after all the hypo's over the years I still remember that very one as if it were yesterday.

@conniecar, you have a lot to put up with so it's understandable you get fed-up and lonely, but you should consider your husbands suggestion about seeing a counsellor, it may/may not help but you have nothing to lose. Take care & best wishes.
 
I've tried counselling a couple of times and have felt like the counsellors were banging their heads against some mad ******'s wall, but ultimately I think the underlying problem was me not wanting to talk about certain issues (for a change, not wonky pancreas stuff). That said, it does help a lot of people. If you give it a chance then you've little to lose and potentially a lot to gain. If it doesn't work out, we're still here.
 
Injecting oranges - yeah it was so easy and I felt dead medical ( coincided with the year I got a nurses outfit for Christmas too.) I'd forgotten about the Peter and Mary type book, I remember now that Peter had 'forgotten his 10gm snack' ( naughty Peter ) and there's an illustration of him lying pollaxed on the back door step. I've not worked out how to do 'likes' on here or thumbs up's or hugs, but you've all made me feel 100% better. I'm really lucky as my Dad was diagnosed with type 1 when I was 11 ( I thought he'd caught it off me ) so living with it was easier with a partner to moan with, we'd even have joint appointments sometimes with the consultants, sounds weird but it worked. I've missed that daily connection for the last 22 years since I moved out, although bizarrely enough we have exactly the same complications with hands, shoulders and eyes . He likes to have the same things so is probably speeding towards the menopause now too. Thanks all - as I remind myself daily there are much worse things in life, but for some reason I was very angry. By the way I once squirted insulin over my sister - in - law's corned beef hash accidentally, she's a pain so I'll never forget my secret delight watching her pick up her plate, sniff it and ask her husband if he'd changed the recipe #smalldiabeticjokes xx
 
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