Living with Type 1 Diabetes

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Happy World Diabetes Day everyone. 😀

A really short blog just to explain my very important appointment this afternoon.

Today has been a fabulous day. I did spend the first half of it with butterflies in my stomach only for that to get worse on the trip to the hospital and in the waiting room but my new doctor soon put me at ease.  I had my first appointment at pump clinic to see if I would be okay’d for an insulin pump. The answer was most definitely yes!! 🎉

She asked my what I already knew about insulin pumps as I seemed quite well informed, all thanks here goes to the Diabetes Online Community or DOC for short for sharing your knowledge with me. You did get a mention and I said how fab you all are. I’m sure if she could have given me a pump there and then I would have walked out with one, she was so excited and very positive. As I’m already doing lots of & good carb counting she didn’t think a carb counting course to really be necessary before pump but DSN conceded at just a refresher. Think this is basically a tick box exercise really. Dr was concerned about my problem with hypos so said a CGM would need to be looked into in the future but to get a pump sorted out first. So even more exciting news.

My refresher is 3rd Jan so I just need a bit more patience to wait for this and to actually start on the pump. Dr is hoping that it won’t be too long now, DSN said they’re still waiting on tender for pumps but Dr said it must be close to the end of that now so hoping the wait won’t be too long.

My choices are Animas, Roche or Medtronic 640g. I’m leaning towards Animas already but spam me with your experiences and what works for you with your pump.

Relieved and excited 😬😬😬😬🎉🎉🎉🎉🎉


So has anyone else been so knackered in the night that this has happened, or am I the only numpty?

I set an alarm for 3am as I was a bit lower that I wanted to be going to bed but due to a fatty meal I wasn’t sure which way my bg’s would go. I didn’t want to go low but then thinking about the meal I’d had I might end up high and I didn’t want to wake up this morning super high.

When I was ripped from my sleep as 3am, I “flashed” my Libre across my arm and had a 7.7 steady reading. I thought fine lets go back to sleep, but unknown to me I must have pressed snooze, TWICE!!  So by 3.30 my sleepy mind is thinking its time to get up, check my bg, have insulin & get up. I was 8.7 on the Libre and my bg was 9.3, so thinking “yeah it went the way I thought but not as high as I was fearing”. I then gave the insulin dose, put my head back down for a sec just to check my phone, to see if my girl had messaged at all from uni as she’s a night owl. A short while later I realise that I felt way too tired for my usual wake up time, so I double checked the time. To my absolute horror it was only 3.40am. So I chomped a good way through my hypo stash and set an alarm for an hour later. An hour later I chomped a little more of my hypo stash and set the alarm for hour later again. Hugh relief all was ok! Phew!!

At my usual wake up time my Libre said 3.8 and my actual bg reading was 5.4. Crisis averted…just! What a numpty! I’m even more knackered now. 😦


***WARNING***

Please be aware that some of the content is very upsetting.

A year ago my husband shared this as a Facebook post. I then shared it also. It came up this morning in my “Memories, On This Day”.

I asked him if it would be okay to post it here as a guest blog to which he agreed.  Allun was a paramedic for 10 years.

Here goes…

‘Finally feel able to share …. (Actual experiences … )

I was a Paramedic but nobody taught me….

I was a paramedic, but nobody taught me how to sit an 86 year old gentleman down to tell him his wife of 65 years had died in her sleep.

Nobody taught me how to watch as the desire for life left his eyes the moment I broke the earth shattering news that would change his life forever.

Nobody taught me how to accept a torrent of abuse from a complete stranger, just because they had been drinking all day and wanted a lift home.

Nobody taught me how to reason with the aggressive patient I’ve just met; overdosed, but needing my help to breathe.

Or the addict who was unconscious from overdosing. I saved his life but now he hates me because he’s clicking again.

Nobody taught me how to talk to someone so depressed that they had just slit their own wrists, panicked and called for help. Nobody taught me how to respond when they turned to me and said “I can’t even get suicide right”.

Nobody taught me that I’d need to bite my tongue when I went 2 hours over my finish time for someone who’d been ‘generally unwell’ for 24 hours.

Nobody taught me how to accept that I would miss out on things other people take for granted; birthdays, christmas day, meals at normal times of the day, sleep.

Nobody taught me how to hold hands with a dying person as they take their last breath, seeing the fear in their eyes but holding back the tears because it’s not my grief.

Nobody taught me that I’d need to keep a straight face whilst a young man explains exactly what happened to the end of his hoover.

Nobody taught me how to act when patients pulled a knife on me, a gun and a sword.

Being a paramedic was so much more than swooping in and saving lives; it was about dealing with the most unique, challenging experiences then just going home at the end of the shift. Being asked by my wife ‘how was your day?’ and replying ‘fine thanks’ because I was unable to talk about the stress and carnage the day had brought into my life.

Being a paramedic was about constantly giving a bit of yourself to every patient, because although it’s was my 5th patient of the day and I couldn’t remember their names, it’s their first ambulance, their loved one, their experience.

It’s about the bits that nobody taught me how…

Like standing in a supermarket with a dead baby in your arms seeing the desperation in the eyes of the parents and doing everything you can despite knowing it’s already too late.

It’s about standing on a bypass surrounded by carnage and body parts but remaining calm and professional even though inside your head you are screaming. Then years later waking up at night in a cold sweat haunted by nightmares from the faces imbedded In your memory.

It’s about providing pain relief and reassurance to a 90 year old lady who’s fallen and hurt her hip, and despite all the pain she turns and says “Thank you, how are you?”. Then just smiling back because you cant tell her.

It’s about a hug that you give someone on Christmas Day because they haven’t spoken to anyone for days, they have no relatives or companions but you’ve brightened up their day.

It’s about climbing in the car next to someone and saying ‘Don’t worry, we’ll have you out of here in just a moment…you’re going to be ok’ even though you know they will probably die within the next 30mins if you don’t get them out. Some made it … some didn’t.

It’s about everything that I did to save lives that required me to bend the occasional rule, which resulted in saving a life but then getting a written warning for my actions.

It’s about knowing fact that I couldn’t attend to the dying man because I was dealing with a drunk… who then assaulted one of us. Or the guy with the new shoes that were hurting him because they were too tight.

I was a Paramedic, But Nobody Taught Me How to carry the burdens into my future….

To paraphrase Major Dick Winters…

I wasn’t a hero… but I served in the company of heroes.”

 

A few comments left on his original post.

“There are a couple of good blogs by  paramedic and they are named Blood, Sweat and Tea. I dare say you could upsurp them with such wonderful and emotive writing.” – NH

“This man wasn’t just a Paramedic. Allun was a great teacher, he was able to listen out for the img_1101important information in a conversation and had that quality in a paramedic this is SO hard to find. When the **** went down, he didn’t panic. It was a great loss to the Welsh Ambulance Service when Alsie left but it was a greater loss to me. When it was my turn to steer the ship it felt like I was doing it without a rudder. The picture of Alsie’s kitbag that goes everywhere with me in work. I had my only diva moment over his bag when he handed it back.” – JG

 

“Wow. You made me cry! We take so many people like you for granted. x” – HW

“This has opened my eyes and made me think alot! Very touching Allun,  thank you for sharing your feelings like this 🙂 x” – AH

“I found this inspiring and emotional at the same time, amazing, had to share.” JD

 


As it’s Hypo Awareness week I had been thinking about my experiences of hypoglycemia (hypo).  So far in my experience there a 3 different degrees of hypos. Hypo’s happen for many, many different reasons: too much insulin for the carbs consumed, exercise or just being busier than expected, temperature and hormones to name a few.

Here are some symptoms of a hypo/low blood sugar. I can experience some of these, but not all at the same time. They can also differ from hypo to hypo, for me it depends on the severity of the hypo. I have also experienced foggy brain, nausea and tingling lips. Different people experience a difference mix of symptoms. Some people have even been assumed to be drunk when they are actually hypo (link of a story further down this page). Some people don’t have any warnings at all, this is called hypo unawareness.

low-blood-sugar-symptoms

 

1st degree – these are the type of hypos that no one would even be aware that I was experiencing a hypo. I realise that I feel a bit “strange”, check my blood glucose (bg) levels, get something to treat it and just carry on as normal.

2nd degree – with these ones I’ve usually informed someone (work colleagues/husband/child etc) that I’m feeling a bit rough, get something to treat the hypo and need to sit for 10 minutes or so until my bg levels rise to an acceptable level again.

3rd degree – these are the ones that “floor’ me.  Thankfully they don’t happen very often but when they do they can take me out of action for a considerable amount of time and make me feel really awful. These are the ones that make me panic more so than the others.  If in work, I’m also racked with guilt at the sight of my fabulous colleagues being very busy working whilst also checking in with me while I’m sat down totally unable to help. Even when my BG has risen to an acceptable level I have to stay where I am as I’m still recovering. These hypos take the longest to get over and can make me feel extremely tired and wiped out afterwards, actually during and after all I feel like doing is laying down and curl up in a ball, obviously this is not practical most of the time. At home it’s easier for me to get my husband or one of my children to do the running around to get something for me to  treat it with while I sit on the sofa concentrating on sweating and shaking.

Thankfully, for me, I’ve never experienced anything worse. I’ve never ended up unconscious and needing the help of others. Hoping that this is never the case. Recently there was a case reported where people thought a man was drunk and they just left him alone when he was actually experiencing a hypo and needed the help of others.

How much do you actually know about hypoglycemia, would you recognise and be able to help someone experiencing a hypo? Here are some pictures and a quiz that I shared on Facebook.

Pictures – Would you recognise the symptoms of a hypo?

Quiz – Hypo Awareness Week 2016

Here is a link to explain what to do if you are experiencing a hypo from Diabetes.org.uk.

 

 

 


Yesterday I had my first ever podiatry appointment. I was referred earlier this year after my routine diabetes clinic appointment. At clinic she was concerned about the pressure points on the bottom of my feet, and so thinking I needed insoles including arch support.

I was given an appointment in an area I don’t know (Bargoed) which is about a   40 minute journey from my home. This was so I could be squeezed in before the end of August. When we finally found the clinic, it was at the end of the day, I was the only person in the waiting room. So it was only a few minutes before I was called in.

I was asked all sorts of medical history questions and he looked at my last hba1c and was impressed & said it must have taken a lot of hard work. It did! I explained that a couple of years ago I’d gone right off the rails with my BG (blood glucose) “control”due to burn out. After the hospital asking to see me more regularly and more recently with the help of my Libre I’d was back on track for the most part and that it is still hard work trying to manage BG’s.

I was asked to sit on a chair similar to a dentist chair and hoped that my recently washed feet hadn’t got smelly as it was a very hot day (eeeek). Thankfully, according to the podiatrist, I had nothing to worry about as really bad foot conditions with very bad smells had been seen before so there had been no need to get self conscious.

So I had my first ever ultra sound scan on my feet. It took me right back to the baby ultra sound scans and the sound of the baby’s heart beat. Obviously we were listening to the my artery sound. On one foot there was a double sound and on the other a triple sound which is apparently very good, so no clogging/hardening of any arteries, phew!! Next I had the usual “can you feel this” pokey stick check (I’m sure that is the technical term 😀 ) which was all good too. Finally, the vibrating tongs. The only thing different this time was I had to say when I stopped feeling the vibration. Apparently I’m at 6, good is 8, diminished is 4-6 but he did say 6 could just be normal for me anyway so he wasn’t at all concerned.

I was then asked to walk across the room so he could see how I walked and my foot placement. Apparently I have tight calves which are causing more wear & hard skin on the ball’s of my feet, as basically I am rotating on the ball of my feet as I walk. So I don’t need insoles (at least not yet), I’m glad I didn’t just go and buy some as they’re not cheap. I just need lots of calf stretching exercises & I have to go back in 2 months time to see how things are going. He recommended twice daily moisturising (any cream as long as its not face cream) and to get a foot cream with urea in to help on the particularly tough patches.

He asked about the type of footwear I wear, I explained about what I wear to work during the different times of the year and if I’m going out. There was the usual advice about footwear, but was fully aware that us women still like our shoes 😀 . He said that wearing something with a strap, laces or velcro (no way!!!) acted like a seatbelt for your feet and therefore less wear on the pressure points of the feet. I hadn’t thought about it being a “seatbelt” before, but it was a good analogy and made perfectly good sense. I have in mind some shoes with a strap for work (they’ve got to be pretty though) as I am on my feet all day but when it comes to going out I am still wearing my Ruby Shoo’s. I was asked to bring some photographs of some of my footwear next time.

I asked what could cause the tight calves and, of course, he said that there are all sorts of different reasons but had I heard of glycosylation (I have since Googled it, link here), which I hadn’t.  He gave a brief description and said that it could also be a cause of things like a frozen shoulder too in people with diabetes. So that explains why so many people who have diabetes seem to suffer with a frozen shoulder?!

I’ve already been doing my exercises, I just need to remember to keep it up!


So last Wednesday (20th April) was my 6 monthly clinic appointment for my diabetes. I was quite nervous about it. Not because I would be getting my Hba1c result, even though I was hoping that the Libre had continued to help me reduce it like last time but because I was going to mention an insulin pump, for the second time.

I asked about an insulin pump just over a year ago, January 2015.  I was told that I was doing well on MDI (multiple daily injections) and that it wasn’t necessary. I was disappointed and thought that it could really help with a few issues.  The following month I attended PWDC15 (I wrote a blog about it, you can read it here if you like). I spoke to several people who use insulin pumps, chatting about some of my experiences and being informed that an insulin pump could really benefit me.  So I was all fired up to mention it again at my next clinic appointment.  September came around really fast for my next appointment and I have to be honest I chickened out as nothing had really changed since January apart from now using a Libre flash glucose monitor.  My Hba1c had improved hugely, in fact it was the best it had been in few years(50!!), and that & the Libre seemed to be the main focus of the appointment. So I kept me thoughts to myself.

I was disappointed with myself  for backing out.  I was still having issues with hypos, lots of them and no matter what I did I couldn’t seem to avoid them unless, of course, I wanted to run really high. Busyness in work changes day to day and I’ve no idea how things will be until they’re happening. Also, due to the Libre I was noticing that I was sleeping through hypos for quite some time. I do set an alarm to try and catch any but sometimes I’d checked about 30 minutes or so before one has started and I’ve gone back to sleep thinking everything is ok only to wake eventually to see by the graph that I’d slept through lows. I check BG, just to make sure it isn’t reading low because I’ve been laying on the sensor, and find out that I am low.

I was fortunate enough to be able to go to PWDC16 in February again this year (I wrote another blog).  This year I attended a session about transitioning to a pump from MDI. I was able to ask lots of questions and share my experiences again. I also chatted to others individually about the same things. I was really encouraged to ask about a pump again as many thought it could be very beneficial. You know who you are, so thank  you for helping me to realise I wasn’t being silly and helping to build my confidence up to ask again.  Just before going to PWDC16 I had decided to start writing EVERYTHING down. Yes my Hba1c was much much better, things looked good but I knew just how hard I was working on it but still having lots of hypos and other issues that I felt I needed to be able to show at my next appointment to “back up” my reasons for a pump.

Anyway after all that background, lets get to this appointment. I arrived and checked in. I was beginning to feel quite anxious. Second thought, was I just anxious or hypo?  Libre said 3.4->, and a blood reading was 4.3 mmol. So maybe it was just my BG level, I quickly ate a few Jelly Babies as I didn’t want to put the DSN or myself through the Hypo box situation again. There is also a previous blog that includes that bit, but I’m not going there again it was a little embarrassing for me. After a while I still had the anxious feeling but my BG was fine. Argh, I’m such a wimp sometimes.

After a while I was called through for the usual weigh in & water sample to be handed over. Then I was sent through to the next waiting room, as usual. Next I got called through to the next waiting area where you sit and wait to see the DSN and then the consultant/endocrinologist (endo for short).

When I went in it was the same DSN I’d seen the last few times and I knew I had to get around to mentioning the pump to her. I didn’t have any worries about saying it to her personally as she is really lovely, I was just nervous about mentioning it incase I was told it wasn’t necessary again.

The usual “chat”& questions started, how was I, my feet, any lumps etc?  We looked at my Hba1c result which had dropped by 1 to 49mmol, 7.6% (eek, so pleased that I can prove to myself that the cost of the Libre is worth it).

She asked if I had any questions so I got my book out. I explained that I needed some help with a few things, hypos in particular. I had a few sticky note tabs attached to certain days so I could find them quickly. I also had photo’s of some Libre scans again to “back up” my notes and so she could see exactly what was happening and then refer to my notes to see what I had been doing.  We spent some time looking between the pictures on my phone and the notes and chatting about possible solutions.  It’s been a lot of work keeping the detailed notes but it was definitely worth it to be able to go through them with her. I explained that I also wanted to start exercise but I would need help as all I did with exercise was eat to fight off the hypos, defeating the purpose of exercise to loose weight. I admitted that I didn’t know how to deal with insulin and exercise. I was also slowly building the courage to ask if these issues could be helped with a pump. Eventually, I asked questions about a pump and my issues and with each question her answer was yes. We chatted about some of the things that a pump would offer, tbr’s, extended bolus etc, and a few other bits that the DOC chat about and some of the things I had learned about at the Nottingham conference in February, she was surprised at what I did already know about pumps (don’t get me wrong I obviously still have a lot to learn so get ready for lots of questions).

I asked my husband Allun to come in with me. Just as a bit of moral support and a prompt if forgot to ask things that I had previously chatted with him about that I wanted to talk/ask the DSN or Endo about. Next thing I knew he was telling the DSN about me and my life with diabetes from his different perspective. I got a little emotional and with much difficulty I managed to suppress the tears. I had no idea he’d bee paying so much attention. Diabetes really does effect everyone in the household and I hadn’t really realised before just how much. He supported me in my questions about a pump and finished what he was saying with “She is trying so hard to keep on top of her diabetes on MDI and struggling with these hypos, not knowing what each working day will bring either. I think it’s time she was given a chance and if a pump can help with this she needs to be referred. I just want my wife back” (me fighting back the tears here).  She then asked me a few extra questions about hypo awareness and other things, and said that she thought a pump referral was necessary, and felt that a request would be approved. She excused herself and said she was going to have a word with my endo.

Looking at the clock I realised we had been in there a long time, way over half an hour. I felt guilty as I knew there were others in the waiting room. She came back in, I thanked her for her time and apologised for taking up so much of it. Her response, “Don’t apologise, that’s what we’re here for.”

Next my appointment with my endo. She confirmed what the DSN had talked to her about and that she agreed and she would refer me to the pump clinic!!! Yay, those annoyingly time consuming notes had been worth it. She was concerned that I was sleeping through the alarms on my device (Libre) at night, I explained that it was a flash glucose monitor, that it only read when I swiped my sensor, that it holds 8 hours of information and that it didn’t actually alarm. Her reply was that we may need to look at something that alarms (I’m presuming CGM) but first we need to see if a pump helps with the night time hypos. She was hugely pleased with my glucose improvement over the last 2 years and told me that she was very proud of my achievement, thats the first time I’ve heard that in 13 years since my diagnosis with type 1 diabetes (big pressure on myself to keep it up now, but to be honest I don’t want to go back to my previous numbers). We discussed insulin to carb ratio’s and she suggested some changes to try. She wanted to check my feet, my sensation is fine but she was concerned about the pressure points on the balls of my feet and heels for the future and recommended I use support insoles. Apparently I’ve got a good arch to my foot but I need something that’s going to support my arch and disperse the weight on my feet as I’m on my feet all day.  She ended the appointment saying that unfortunately she wouldn’t see me again at this particular clinic as the pump clinic was in a different part of the hospital. Apparently I should hear from the pump clinic within weeks.

This was a particularly long appointment this time, but I left feeling excited, happy, nervous, glad that I had plucked up the courage to ask, relieved that I had taken “evidence” with me. I just need to wait to see if my request is approved now.

Thank you to the DOC & GBDoc for all your support and advice. I am very sure that should my request be approved I will have a lot more questions for you all.

 

 


It’s been a week since we’ve arrived home from PWDC16 (People With Diabetes Conference 2016) and I’m only just finding the time to write a blog about this fab conference so I’m way behind everyone else. But hey ho, here goes.

I was thrilled when I was informed that a generous donation had been made to the GBDoc meaning that the PWD conference in Nottingham was now free of charge. Disappointingly, when the information came out about the conference we just couldn’t afford for the two of us to attend (me and the hubby Allun that is) on top of travel and hotel expenses. We had been to last years first conference and had really enjoyed it. As soon as I learned of the change I text Allun asking if we could now attend, his response was “well if  you can find a hotel we can go”. So the computer was fired up and I was excitedly looking for somewhere to stay.

Time soon came around for the weekend away. I think we were both looking forward to it.  We left on the Friday evening after work and planned to stay over till the Sunday.  This year there were to be two days of the conference instead of one.  I was really looking forward to meeting up again with some of the people we had met last year and also some others who were attending for the first time. People who I have connected with via Twitter initially through the #doc (Diabetes online community) and #GBDoc and later on through Facebook.

IMG_6484

And were off…

We arrived in Nottingham around 7.30pm, got settled in our room then went down to the restaurant for some food.  First time in a long time that we’ve sat at a table for 2 (without 3 kids basically).

 

Day 1

Next morning we made our way to Colwick Hall, a very impressive building.  WE spotted a few familiar faces in the car park said hello and made our way to the conference. It was held in an equally impressive marquee that was situated around the side of the main building.  As we went in we were greeted and book in by Rhodri.  We put our names on a “Hello my name is …” sticker and popped it on.  Immediately we spotted Abby & her husband James, Adrian & his wife Sue, Ellie and her mum Mary. I had met Abby, James, Adrian and Sue last year so was meeting Ellie (and her mum) for the first time. All we stood around with a cuppa in our hands having a good old chat.  It didn’t feel like it had been a whole year since we had met for the first time. That might have something to do with interacting via social media over the year.

Before I go any further PLEASE forgive me if my memory fails me and I don’t mention you. We saw a few more familiar faces arrive, Phil, Jules and her husband Lee. Other people introduced themselves as they were unrecognisable due to their profile pics not showing them, for example Steve (and his wife Suzie). A short while later Lydia arrived. I also met Alyssa at some point too.

Soon it was time to take our seats and Paul opened the day, explained the open format, he asked us to write up the type of things we’d like to hold sessions on and to pop the sticky notes on the board. The board filled up rather rapidly with lots of ideas. During this time I noticed that my BG (blood glucose) was dropping so I was testing and treating with Jelly Babies. I did this a few times and it just kept dropping.  Alex must have noticed me stuffing my face with sweets and from the front mouthed to me “are you ok?”. Thankfully, they had started to rise back up so I was able nod my head (thanks again Alex for making sure I was ok). This is one of the great things about being in a room full of people with diabetes, they know exactly what’s happening. I wasn’t just being rude rustling around in my bag for my sweets, I needed them. It’s great to be with people who just “get it”.

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And were off.

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Get writing people.

I had two things that I had gone to the conference with that I wanted to know more about. 1) I wanted to know how to start exercising, as someone who does not exercise, because I don’t know how to work things around my insulin and not go hypo (short for hypoglycaemia or low blood sugar) for hours later.  I used to go to the gym years ago but I’d end up consuming more than I was burning off so I didn’t see the point in going anymore. 2) How others dosed for those “tricky” meals that include carbs and fat, like pizza. Dosing so that you don’t go hypo before your body finally decides to release the carbs and for the 4 to 6(ish) hours later when it’s still releasing the carbs.

Alex started to pair up similar ideas so the sessions could be arranged.  We all had a voice in the arrangement of the day so people would be able to attend all the sessions that were most important to them. My queries went into the Sports and Exercise session and the Food/Diets session.  Thankfully they were being held at different times so I was able to attend both. We were also encouraged to “vote with out feet” if a session wasn’t for us and go to another discussion or grab another cuppa and have a chat with someone. Tea and coffee was on offer all day. I’d love to know just how many cups of tea/coffee we all got through over the 2 days.

And so the itinerary was set, by us.

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I went off the the Sports and Exercise session which was chaired by a rather nervous Paul but he did a great job. It was a very popular subject.  Allun went to the Mental Health session whilst I was at this one. Whilst listening to the conversations it became apparent that exercise was definitely made easier if you used and insulin pump and being able to set temporary basal rates (TBR’s) and even suspend insulin supply if necessary, I’m on multiple daily injections (MDI). It was there that I found out that Ellie’s mum, Mary, was a fitness instructor and helped T1’s start exercising. I knew I needed to talk to her. A conversation did start over the table but we were having trouble to hear each other amongst the other little chats going on, so we arranged to catch up later, we did and connected via social media so we could chat at a more convenient time. I was a little excited now that I was going to be able to start some sort of exercise in the near future, only a little bit lets not go crazy!! 😀

We had a game of BGBingo and a cuppa. Some chooses a random number, we get out our glucose meters, check our blood and write the number with our name on a sticky note, then stuck it on the door. If you weren’t in range you put your note on “the naughty step”. Don’t worry it’s done very tongue in cheek and there were a lot of people on the naughty step, so no one was alone. At the end of the conference two people we going to win an Abbott Freestyle Libre, 1 who was the closest to the chosen random number and someone off the naughty step, so it’s not all bad. At the end of the GBDoc tweet chat every Wednesday evening there’s always a round of BGBingo.  Last Wednesday (2nd March) I actually won for the first time ever and was only 0.3 off the chosen number, I was a little chuffed. 😀

I then went off to the Food/Diets session hosted by Paul,  and Allun went to a CGM and Pump (Tech) session hosted by Tim, more tech sessions kept being added in as they were so popular. The main topic of conversation at this session was the low carb high fat diet (LCHF), some people needing to bolus for protein and how much (percentage), some others not needing to bolus for it and lots more information.  One girl shared that she (I do follow her on Twitter but I can’t remember her name atm) needed the complete opposite – high carb low fat. It just goes to show just how different we as diabetics/people with diabetes are. There don’t seem to be many hard and fast rules when it comes to diabetes. I’ve often said if there was a rule book for diabetes, diabetes wouldn’t have read it!  Again a lot of the conversations covered how people did things using their pumps for certain meals, combo bolus, multi-wave bolus, square bolus, extended bolus (I think all those names are correct, I’m sure someone can correct me if I’ve got them wrong or missed some out). All of these things can’t be done with MDI. Since using the Libre I have recently started splitting my basal doses to try and emulate this but not always with much success, it’s a new learning curve for me. During this session I was chatting to the woman (Karen) next to me, realised she was on Twitter and decided to look her up only to discover I was already following her!

Then there was lunch. Lunch was a buffet, it all looked and tasted fantastic. Lovely filled wraps, sandwiches and bagels, quiches, onion bhajis, spring rolls to name a few, cheese cake, and a big platter of fruit, yumm!! I must admit though my first thought was “where’s the salad?”, then “what are those who eat low carb going to eat?” I obviously wasn’t the only one.

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You could tell the ones with function pancreas’ in the room, they were the ones with a mountain on their plates. Ahem, Allun!! 😀

Time for the final session of the day. Allun went to the tech “hacking” session. Paul and Adrian had arranged for Adrian to hold a Freestyle Libre session as well during this time. Kirstie (not on Twitter) went along with Adrian to answer any questions people had. It’s always better to get first hand information from the people who use a medical device as they are living it day to day, unlike a sales rep. I decided to join in this session and also share some of my experiences with this.

Once all the sessions were over we got back together and had a summing up time.  After which some people made their way home, some back to hotels to get ready for the evening and some people stayed and chatted.  We went for a quick freshen up and a change of clothes for the evening.

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I’m ready.

We hadn’t been there long when Lavina arrived, we met for the first time last year at the first PWD conference. Hugs and hello’s were said.  We stood chatting in a group when a young woman came up to me and said “Hi, Nic how are you?” I don’t know what my face was like because it was swiftly followed by “I’m Jo… @Yoga_pumper!” The penny dropped and there were hugs all around again.  It’s so great to put a real life person to a picture and Twitter handle.

A 3 course meal had been previously booked for approximately 60 of us.

For once at a meal table the type 0’s (non-diabetic) were the odd ones out. Usually at a meal table I am the only one sat there carb counting/estimating, checking my blood sugars, and injecting insulin before I can start my meal. It was great to see everyone else getting their blood glucose machines out and taking insulin etc. At our table there was Abby & James, Phil, Paul, Steve & Suzie, Lavina and Jo. We had a great meal whilst chatting.  After stuffing our faces several people arranged to meet in Nottingham for a few drinks.

We eventually met in the Canal House, just a 10 minute straightforward walk from where we were staying. I thought it was fab that there was a real canal with boats in it. We had to go over a little bridge to reach the bar. There was rock music playing, I knew that this was the kind of place our 20 year old would have loved so I took a little video and sent it to her, yep she loved it.

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People slowly arrived and we all sat about chatting. I think I spent the majority of the night chatting to Phillipa about insulin pumps. At midnight Allun suggested we leave. Where did the time go?

Day 2

As I arrived two familiar Twitter faces were already there, Nick and Kevin, so I introduced myself. Day 2 started of pretty much the same as day 1, we wrote our names on stickers, had cuppa’s and chats then sat down to decide the agenda for the day.

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Today we had a group photo (this was originally going to happen on day 1 but as we were all so busy it got forgotten about). It was worked out that between us we had 1000+ years of diabetes experience. Going from 50+ years down to 5 years or less each. I was in the 10+ years group. Actually I’ve had diabetes for 13 years today (8th March).

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Two people alone had 101 years of experience between them. Lis with 51 years and *Pat with 50 years, amazing!!

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Pinched from @LisWarren

 

Onto the sessions. This time I wanted to know about transitioning from MDI to pump, how to go about it, what to expect when asking for a pump. Again tech was an extremely popular subject, this and MDI to pump were put together during the first session.

Mark (I believe) had been using an insulin pump for only 9 months so he kicked off the session and explained his experience of starting a pump. A young lad in the group said that he was starting on a pump in the next week so had a few questions to ask too. Lots of people were able to share their experiences of using various different pumps. Some that are used in conjunction with continuous glucose monitors (CGM).  Every person who was already using a pump sang its praises and said they would never want to go back to MDI. Advice was given to make sure others insured their pumps and it was noted to check out travel insurance and household insurance to make sure it was covered. Some companies would send replacements for free but not all.  How long they were guaranteed for was also talked about and was different depending up the medical company. Hints and tips were given for travelling (x-ray machines and body scanners etc, hand luggage etc), using in hot/cold weather.  The discussion then moved onto CGM in the cloud, X-Drip and Nightscout. Kevin, reluctantly at first, gave information on his experience of using this. It was extremely fascinating listening to him explain all this even though I don’t use a system that can show my blood glucose on a watch. There’s some very clever people out there in the diabetes community.  Open loop (suggests corrections etc for you) and closed loop (does the corrections for you) was also discussed and people’s preference if they were to use either. All very interesting stuff to learn about.

Just before the start of the next session I heard another “Hello, Nichola!” I turned around to another unfamiliar face and was immediately informed “I’m Fluffy Monkey“. Ahhh!!!! Hello’s continued. Again, it’s always great to put a real life face to a picture. I’ve just realised though Fluffy, I didn’t ask you what your real name was, DM me :D.

The next session I attended was about diabetes and hormones. I was expecting it to be mainly women but a few brave men joined the group. The age range of people varied as always during the sessions. Hormones effect your blood sugar levels when growing up (male and female), as a woman of child bearing age and the more “mature” woman (The Big M). To be honest I’m not sure if hormones are an issue to males at any other time other than when growing up, no one said. Sarah kicked off the discussion and I think everyone had something to say about how hormones effect their blood glucose levels and even mental health. It causes numbers to go sky high and stay that way for a time or to run low so people were fighting off hypos for days at a time for “no apparent reason”. I think it was very cathartic for us all to know that not only were we going through day to day life with diabetes but with the same problems that come with life and diabetes too.

Cuppa break!

Whilst having a cuppa @lizabetic came over and introduced herself (another person on Twitter that I follow that I didn’t recognise). We chatted about the first session, MDI to pump, she had realised that we were facing the same difficulties about wanting to use an insulin pump but not having got anywhere. A lot of our reasons were very similar. I’m so glad that I put that subject forward as there seems to be quite a few people who also wanted to know the same.

Lunch! This time I think the message about low carb had been received.  Lunch included salads, cold meats, chicken satay, chunks of salmon, grated cheese, egg etc, cheese cake (lush) and another big platter of fruit. My plate came back a bit fuller this time. 😀

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Yummmmm

After lunch, I chose to go to the complications chat.  Several complications were mentioned, diabetic retinopathy seemed to be top of the agenda. A lady (I don’t know her name sorry. *I do now! 😀 Beccy) explained about the laser surgery etc that she was currently going through along with other personal information about her life with diabetes. Shaun, who had joined us the previous evening also, also explained about his experiences. A lot of questions were asked about other complications including heart disease and dupuytren’s contracture, which I had never heard of before. Towards the end of the session Paul came over and after a short while asked how many people, in the group, had had a problem with a frozen shoulder at some point. The answer was a lot! It seems that people with diabetes tend to be susceptible to a frozen shoulder.

Whilst having a cuppa, during some point in the day, I went and sat and had a chat with Jules at the table that had been set aside especially for the “queen” of the day.

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I can’t believe how quickly the day went, before we knew the day was nearly over and it was time for the summing up of the day. Allun and I went and found our seat. I thought it was a good time for a selfie and Phillipa thought it was a perfect time to photobomb us. 😀

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Hello!!!

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Summing up.

After a fabulous weekend it was time to travel back home. We had had great weekend away, it’s not very often we go very far without the children, thank God for grandparents. Both of us had taken in a lot of information over the weekend and talked about it most of the way home. From what Allun has told me its also a good weekend for the partners of those with diabetes. He had also learned a lot about life with diabetes, the tech out there to help live with it and many other things. Thank you GBDoc and Team Blood Glucose (TeamBG) for arranging a fabulous weekend.

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The sunset on our way home.

 

* Updated 12th March 2016

 

 

 

 

 

 

 

 

 

 

 

 

 



Lis Warren

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Growing Up With T1Diabetes

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theunderstudypancreas

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Raaah22

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Ninjabetic

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