I’ve had type 1 diabetes for nearly 12 1/2 years now. When I was rushed into hospital and diagnosed I had no real knowledge of diabetes. My only “knowledge” was if it was going to be the one where I’ll have to inject everyday (my worst nightmare) or the one that I don’t, the was the extent of my knowledge. I got “my worst nightmare” type 1 diabetes which is auto-immune which means my own immune system attacked healthy cells and caused diabetes. I remember there being a girl when I was in high school who had diabetes and I just recall that she ate a Mars bar before games lessons, that was it. I had no idea why or how they were different. I had absolutely no idea that there were any other types of diabetes too. I mean, I didn’t even know what the two were called, why would I? The Monday morning after I was taken into hospital (I went in on a Saturday morning) it was explained to me by my consultant that I would have to inject for everything that I ate/drank, I crumbled. Fair play, to my then consultant (he’s recently retired), he was very gentle and kind in explaining. He even managed to make me laugh by “launching” a needle into his own abdomen to demonstrate how “easy” it was to inject, because due to my limited knowledge that was my only concern at the time. I know that would have horrified some people but it did at least stop the tears for a while.
For years I just took what my health care providers told me as gold and I did the best I could, as I was told, like a good girl. I kept myself on a very strict and restricted diet. I went through a successful pregnancy 10 months later and have a very healthy 10 year old. No one told me either that there was a honeymoon period after diagnosis. I can’t remember asking any questions and so I never took ownership of my diabetes.
Overtime my insulins changed and I self taught how much insulin to give by looking at the portion size and just knowing me, I was initially given base doses for each meal time to work with. Things were fine and I would have a clinic appointment at the hospital once a year. Eventually things started to go downhill and my Hba1c started rising, my team were concerned and started to monitor me approximately every 3 months. When it wasn’t improving I was asked to see a dietician again and have a bit of a chat about carb counting. I wasn’t aware of carb counting at all. I didn’t know anyone else with diabetes to ask either. To be completely honest I think it was more down to burn out and dealing with this by myself day to day, night by night. In fact I wasn’t even aware that it was burn out then as I didn’t know this existed until recent years. Just looking back it makes sense as to why I’d been so good trying to “control” my diabetes for years and then I just slowly gave up caring really what the numbers said.
I was introduced to Twitter by a lady from my church to keep up to date with events at church. It wasn’t very long after, and I don’t recall how, that I came across other people with Type 1 diabetes and eventually the diabetes online community or #doc for short. Slowly I’ve learned more about my diabetes via the the articles and blogs shared. Also by other people’s experiences about their diabetes in real time through their tweets, not saying “woe is me, give me attention” but just sharing what real life with diabetes is like. It literally has its ups and downs on an hourly basis (sometimes minutes). I’ve learned that it’s not just me, I can’t “control” my diabetes but I CAN manage it, that I’m not necessarily getting it wrong, other’s do make mistakes also and sometimes its just diabetes, etc. I’m sure many of you can add to the list of “realisations” since finding others with diabetes. Through finding the doc Ive been made aware of websites that help and therefore conferences and discovery days which have been really helpful. I know how to use the internet, have done for years, but as I took all my health advice from clinic I never sought out any information online, why I do not know. Stupid huh?
There have been many times that I think I should just ask someone online and haven’t only to come across someone asking the same question and getting lots of helpful responses and support, or the subject has been covered in a Tweet chat. It’s good to know that I’m not just being dumb and it’s a learning curve for all of us. I need to remember that other’s didn’t know the answers once and had it explained to them by someone else.
Since finding the doc I have also recently starting to download the information from my blood glucose (BG) monitor and take it into my clinic appointments armed with questions and probably answers too. I’ve become aware of pumps for adults. I did know, in recent years, of children with pumps but at that time I wasn’t aware that they were also used by adults. I now know a bit about Continuous Glucose Monitors (CGM) etc. I have used one and at present I have a Freestyle Libre. I can’t list all the little bits of information I’ve learned too that help with the day to day of living with diabetes.
So, since I now download my BG monitor information, I know I can do this with a CGM/Libre. My next appointment is coming up and I’ll be able to go along “armed” with this information too. I’m interested to see if it has helped me to lower my Hba1c more, it has been coming down very slowly but I do want it lower and I’ve been trying really hard, even more so now that I can see what’s happening with a graph. I have learned so much already from the information that it gives me. I slip up from time to time but I’m only human and it’s not always my fault. It’s diabetes and it doesn’t follow the rule book.
Having graphs to look at I’ve recently been taking a closer look. Only last week I noticed the words “standard deviation” at the bottom of the graph. Oh dear! I don’t know what this means!! I thought “I need to ask someone, but I’m going to look like a right ‘thicko’ when I ask all these knowledgeable people in the doc”. Anyway I plucked up the courage and bit the bullet and went ahead and asked about standard deviation. I’m glad I did. I’m not the only one who’s wondering about it and its usefulness.
There are lots of questions in the past I didn’t ask and I should have. I’m aware that I’ve still got a lot to learn, as I read somethings and I don’t fully understand it all. I just hope I can pluck up the courage to ask next time and therefore help myself or someone else to know more about managing diabetes.
My bedtime BG was 16.6mmol, which isn’t unusual on a Sunday. I usually get it back in range before bed but it just hadn’t happened this time. I had a correction dose and decided to set the alarm for 3am to make sure the insulin had done its job and to double check that I wasn’t going too low.
Before I know it it was 3am and the alarm was waking me (quite often I’ll sleep through it). I dug out my glucose monitor and did the usual. The reading was 9.5, which I wasn’t expecting, the meter suggested a correction. This has happened before and was more than comfortable with the dose. So I delved into my bag for my insulin pen. I rummaged and rummaged and couldn’t find it. So I sat up, pulled the bag onto my lap to look inside it and I still couldn’t find it. I must have left it downstairs after the earlier correction dose. So off I went downstairs, I had contemplated leaving it and dealing with whatever the number was at my usual “get up” time but reprimanded myself for being lazy and wondering just how high it would be by then. I looked for the pen downstairs but couldn’t find it there either. I went back up and looked in my bag again just incase I’d missed it the first two times, and no it still wasn’t there. I decided to dig out my old pen and look for my other one in the morning, so back down stairs. I dialled up the dose, injected it and went back to bed expecting to now be awake for ages. Thankfully I dropped off quickly.
Two hours later…
In the instant of waking up and thinking that was an odd dream, I’m feeling really “off”, I’m too hot, I’m shaking and my vision is blurred and not sleepy blurred, I realised that I was hypo and very hypo too. The only reason I checked my BG was to find out how hypo so I could gauge how much to treat it. The monitor screen showed 1.4mmol with 2 hours of insulin on board!!! (Argh, how, what? Really wishing now that I had my CGM sensor on, if at 3am I had seen a 9.5 with a downward arrow there is no way I would have corrected. I probably would have reset my alarm for another hour and checked then or let the CGM warn me.) Thankfully I had cartons of juice on the bedside cabinet, I ripped the straw off with my shaking hands, eventually got the straw cover off and inserted it into the carton. I drank the whole lot without letting any air back into the carton and totally flattened the carton.
I then got another one, ripped the straw off it and put it in the carton. About half way through I managed to stop myself and made myself wait. I think Allun’s only knowledge of my hypo was him trying to move the quilt, unsuccessfully, due to me being led on top of it trying to cool down. Thankfully my numbers came back up very quickly. By now I only had about an hour before I had to get up. Again, thankfully, I did get back to sleep and when the alarm went off again I woke up with a 6.1mmol.
So that’s how you flatten a juice carton. 😀
At the time of starting this blog I hadn’t signed up to the Diabetes Blog Week as wasn’t sure if I’d be able to do every day due to commitments and family “busyness” but I thought I might as well try. This one isn’t really a hugely positive “I Can” but I thought it would add a little humour to my shock of a 1.4 BG reading.
So… “I Can” flatten a juice carton in a couple of seconds flat!! 😀
Update … I did find my pen the following morning, I must have dropped it off my lap and onto the fold down bit of the recliner. So when I closed the recliner my pen disappeared from view. I’ve done this before with my glucose meter so I should have known really.
I was actually putting off getting out of bed this morning but also wanted to get started too. The only thing holding me back was my stupid nerves. I wasn’t nervous about actually inserting the sensor, I was nervous about doing something wrong (stupid I know, especially in hindsight).
I got everything out on the sofa and looked through the manual, again, about inserting the sensor. I put a brand new battery in the transmitter, switched on the receiver and then noticed the lightening symbol and got the manual out yet again. Panic time (again!!). My first thought was “oh no its not working”.
Ok, so Jason said I could contact him if I had any questions. So out comes the phone and onto the Twitter app. I had a quick response saying I needed to reconnect the transmitter. I have no idea how and so I send another question. Right don’t be silly Nic look through the menu and hey there it is, easy lol.
Ready to go…
Ok, so area on my tummy chosen, cleaned and ready to go. All I need to do now is to ‘STOP SHAKING YOU STUPID HANDS!” (that was me talking to myself at the time :D). I’ll try my arm another time, with these stupid shaky hands I think I’m going to need 2 hands today.
Ok, 1, 2, 3, go! (and yes I did count 😀 )
I heard the click and felt the sensor go in, nothing to really worry about.
My shaky hands didn’t help much when attaching the transmitter. I didn’t notice the click as it connected so I sent a photo and another question via Twitter & was told its fine and to check that the hour glass was on the receiver, it was and so I’m good to go. Just needed to wait for the first calibration in an hours time.
So far today’s numbers have been pants, (way above the grey shaded target area). it’s highest so far 16.9mmol at midday.
Now (3.45pm) it’s at 5.8mmol and dropping. Watching it could become quite obssesive. So far the best thing is knowing which direction my BG is going.
In real life I’m pausing this blog & will continue “My first day with a CGM” later.
* * * * *
Only 10ish minutes later and the CGM vibrated to let me know of a projected low.
Next came the 10 hour calibration and the readings are not far apart.
In real time again now (9.18pm) below is the last 10 hours. As I said above it didn’t start too well, after a very late breakfast. You can see where the predicted low was and I was able to prevent a possible hypo (yay!!!).
Below is since my evening meal until very recently. I’m liking this one :D.
One thing for me to remember is not to forget to take the receiver upstairs with me instead of leaving it on the arm of the sofa, oops.
Thanks for showing interest in my very first day with a CGM.
I woke rather suddenly after a dream before 6am. Because of the dream and the sudden wake up I thought “am I hypo?”. So I fished my meter out of my handbag and my meter told me that my BG was 6.8 to my surprise. I tried to settle back down but all that kept running through my head was that the sensors for my CGM (new to me, but very generously given to me by its previous owner Jason who I was put in touch with, via Twitter, by Dave) [ In real time 12.10pm – I heard a knock on the door whilst typing this up…THEY’VE ARRIVED, the sensors have arrived!!! Just need to wait for hubby to come home in a bit with some new batteries, I also sent him a gentle reminder.]
So lets go back a little, to the 12th March. I was just flicking through Twitter when I came upon a Tweet by Dave, which you can see below and my nervous/cautious/excited reply …
Thankfully, for me, no one had “beaten me to it”. Details were passed on for delivery to me. I did panic a little at first thinking I wouldn’t be able to buy the sensors but soon got over that with encouragement from Jason (thank you very much for that).
I rang Abbott, who asked me to ring back once I was in possession of the CGM and they said they would register it to me, but for now they took my details so it would be easier to process once it had arrived.
The CGM arrived on Tuesday (posted at no cost to me, as the Tweet above says, a very generous man).
I then rang Abbott back, registered the CGM and ordered the sensors. I was told that they would arrive the next day, it all went very smoothly.
As I was unable to sleep this morning, which was annoying and very unfair as I’m already enjoying my Easter break, I thought I might as well get up, take a closer look at the CGM manual and have a look on Youtube for some sensor/CGM videos. Which I did find & watch. I have to admit I am now a little more relaxed (for now) about it all after watching how easy it is to do. I suppose my main concern is messing up the sensor and needing to replace it. Hopefully this concern will be totally unfounded. Jason has offered to be on hand if I have any questions (I have asked a couple already), which is reassuring.
So here is today’s delivery…
and the text I then sent to Allun…
Hurry up and come home now Allun!! 😀
To be continued…
Continuing on from yesterday’s blog…
This is my husband Allun before his fund raising hair dying began.
Our very camera shy friend Sian arrived and at 1.15pm the bleaching of Allun’s hair began.
Time for a cuppa and a hot cross bun. Every now and again Sian checked to make sure everything was going to plan.
Now for the blue, eek!
The time has come to see after washing the dye off.
As soon as it was done his ‘Tomodachi Life “Mii”‘ was changed by our daughter on her game.
It you would like to sponsor this mad act please visit his Just Giving page. All funds raised will go to JDRF (Juvenile Diabetes Research Foundation). Or please see previous blog for the reason behind this. Again thanks to everyone who has donated and a very special thank you to Sian for getting her hands blue.
The dye didn’t take so well to the sides or “goatee” so they were shaved off. This is how he looks now, ready to face the world.
So it’s the day before my husband Allun has his hair dyed blue and keeps it like it for 4 weeks!!
You may be wondering why he is dying his hair blue. We have been to a couple of JDRF discovery days where we’ve learned about research into the cause of diabetes, treatment and tech past, present and for the future. People have also talked about things they have done or are planning to do to raised awareness of diabetes and to raise funds to help JDRF continue their research. Nearly all of the sponsored things people have done personally or as part of an event usually include some physical activity. Allun wanted to “do his part” to help raise some funds but due to a damaged knee my hubby isn’t able to take part in these type of things. So he thought about what he could do. He eventually came up with this ridiculous idea of dying his hair blue.
So last week we went and bought the blue dyes from Blue Banana. Whilst we were in one of our eldest daughter’s favourite shops, looking slightly out of place, a shop assistant asked if she could help, while Allun was looking a bright hair colours. This,at least, gave him his first opportunity to explain to a stranger why he, a 47 year old man, was looking at blue hair dyes. She listened intently and then suggest a few colours.
This is the colour that he chose, no particular reason for this choice other than the colour.
Tomorrow our friend Sian is coming to first bleach his hair then add the blue dye to it. The dye is semi-permanent, so he should have enough in the two pack (& not a large amount of hair) to keep it going for 4 weeks. I shall post a blog, including photos, with the process.
I’m off work at the moment as it’s half term. Allun suggested a shopping trip to a large Swedish store (Ikea :D) this week. It was then that I realised that I was going to have to be seen with him in public and that I should have started up my own Just Giving page to cover it :D. It will certainly be a talking point.
If you would like to sponsor him please visit his Just Giving Page. At this moment in time he has raised 56% of his target of £150.00. Thank you to everyone who has sponsored him so far.
Keep an eye out for the blog & pics.
Saturday!!!! Conference day!!
Where we were staying didn’t have its own restaurant. We stayed in a Travelodge just off the M1. So breakfast was a bacon roll from Greggs, or if I’m talking about our son it was a roll with sausages.
We left in plenty of time to travel to and find where the conference was being held. We were really unsure of where it was being held, we’d “Google Earthed’ it and could only see to the main road as it seemed to be in some huge factory type area, passed a set of security gates. At least we knew what sort of area to look out for.
We found the area easily enough and were let in through the security gates, but we found that that was the easy bit, for a very short time we got a little lost. If we had entered through a different set of security gates we would have been fine as the building was then right in front of you. Instead of helping to look out for the building I decided to Tweet about it 😀 . Then all of a sudden, after driving passed it twice, we spotted the banner on the front steps.
As we pulled into the area we were going to park in I saw a familiar face from Twitter. It was Jules or better know as @Jules1315 on Twitter with her husband and son. As soon as Allun had parked I jumped out of the car and made myself known to Jules. There were hello’s and greeting’s passed between both families. It was fab, these Twitter PWD’s (People With Diabetes) were actually real people!!
As we made our way towards the building more people crossed the road (I recognised a few faces from Twitter) and they obviously knew Jules too. We all stopped outside the building whilst chit chat & greetings went on. Then someone suggested we all move into the actual venue 😀 . As we walked up the steps someone with a video camera filmed us arriving.
We arrived into the conference room that already had people, who had arrived, chatting and having a cuppa.
As I walked in I was greeted by Adrian & his wife. Again it was fab to put real life people to Twitter profiles. We went and grabbed a cuppa and there was also a fab hypo table with all sort of goodies on including the homemade cakes. Our son went & made himself comfy with the iPad, where he stayed for most of the day!! We didn’t here a peep out of him. not one complaint that he was bored! Just as I’d finished getting my cup of tea I saw someone making their way to me with a big beaming smile, it was Lavina (who used to be on Twitter). She had already been chatting to Alan, Philippa (@t1pippop) and her hubby and introduced me to them (again Alan & Philippa I already follow on Twitter but I wouldn’t have recognised Philippa from her profile pic). Next I was stood near the room entrance as another Philippa came in. Philippa recognised me, it wasn’t so easy the other way around again as her profile pic is a Lego figure, it was great to put a face to the name (have I said before that it’s fab putting real life faces to Twitter names?). Liz Warren arrived with Philippa (@flipper1) & they introduced me to Matt, “who doesn’t tweet much” (so I’m not really sure if I follow Matt or not, if I do please say hi so I know who you are 😀 ). I also met and chatted with Rachel, Lindsey and Sam. If I have missed anyone out, first I’m sorry and second please let me know and I’ll add you to this blog
Once we had all found seats BGBingo was explained. For those who don’t know what #BGBingo is, at the end of the weekly Tweetchat you find out our BGL (Blood Glucose Level) after a random number is given, you then post a pic of your monitor/CGM showing the result and the person with the closest number wins! I’m presuming that overtime the #naughtystep was introduced by someone when their BG was “out of range” and it’s become a bit of a fun way of sharing a number that you’d rather not see. So during the day at the conference, at a given time, a random number would be chosen, we would then find out what our BGL was, write in on a sticky note and stick it to one of the glass panels. Yes there was a “naughty panel” too, which unfortunately I spent all day on due to a cold. My fist reading was 16.2mmol (Also it wasn’t too long after a bacon roll breakfast either, they are my excuses and I’m sticking to it 😀 ). There were quite a lot of us making our way to the #naughtystep .
As this was a conference for PWD (People with diabetes) by PWD we were the ones deciding what would happen throughout the day. We were then given a moment to decided what we would all like to talk about, find out about, have support about etc. Each person that would like to came up and explained what they would like a workshop to include. There were going to be 3 workshops during each of the 4 sessions for us to chose from. Below is Liz Warren explaining what she would like and it was added to the day’s agenda.
When all the slots were filled the day look like this :
For the first session I went into the Tech workshop whilst my husband Allun went into the “Partners moan” workshop. I arrived a little late and the room was already crammed with people so I squeezed in on the end. During the Tech workshop the discussions were all about insulin pumps, CGM’s (Continuous Glucose Monitor’s), Abbott’s Freestyle Libre and combinations of these. People explained about how these different items have impacted their lives and their diabetes (their lives with or without them). Some people talked about their reluctance to go on to pump therapy when offered it, how they wouldn’t like tech attached to them. Others said that they had felt the same but would never go back now. Whilst others spoke about their desperation to go onto pump therapy and how they have been fighting for it for a long time without success and all the talk that usually surrounds problems faced when wanting an insulin pump. There was also a lot of head nodding in support. Lesley from Input was in the session and was able to give advice to people. I also noticed that she was very busy during the day with lots of people catching up and asking for advice.
Some of the comments I noted down about tech use are as follows:
- “It gives me more options to deal with it (diabetes). I have less high highs and less low lows!”
- “I’ve got my life back”
- “It’s empowering”
- “It’s quicker”
- “My expectations have changed hugely”
- “Life has been made easier”
- “Ability to alter dose throughout the day”
- “I haven’t had one single hypo since I’ve been using a CGM”
As you can imagine there were also a lot of questions asked and people who are actually living it were able to share their experiences, good and bad.
We were told that there will be new NICE guidance out later this year.
Next was luuuuunch and a chance to have a chat with others.
Before the next session was #BGBingo again! “What????” I thought, “we’ve not long finished lunch.” It was going to be the “naughty step” for me again, along with quite a few others. 😦
Session 2 – Allun and I went to the food/diet/excercise workshop. There were so many of us that we relocated ourselves to a rather larger corner in the main room. There was a lot of discussion about Low Carb High Fat (LCHF), Reduced carb diet, Paleo diet, Low GI (Glycemic Index), bolusing for protein. Most people were just wanting to avoid the after meal spikes and keep their BGL’s as steady as possible. There was discussion about treating hypos, what and how much people use. Also people chatted about exercise and how it affects their BGL’s. Again lots of questions were asked and people shared their experiences.
Session 3 – We went into the what was suppose to be #GBDOC & T2 (Type 2 diabetes) about getting more T2 people involved in social media. There were only a handful of us and none of the T2 people, so after a short time we went rouge and just discussed a few things.
- Auto-immune conditions – there were 3 of us with T1 (Type 1 diabetes) who had a parent with hypothyroidism, another auto-immune condition.
- Our diagnosis stories. Two had been diagnosed as adults and 1 as a child.
- Carb counting and diabetes education or lack of both in some cases.
There’s something I’ve forgotten to mention. During the day the cameras kept on rolling. Not only doing individual interviews with some people but during workshops etc. The camera came into our rouge session just as I was talking about something. If it ever makes the final cut I hope I’m making sense and not getting all tongue tied because a camera is in the room!!
Next was #BGBingo again and yes you’ve guessed it I was on the “naughty step” again.
I’m not sure what happened to Session 4?! I seem to have missed that one.
At the end of the day we all came back to the main area. The evenings “Social” details were explained. Everyone thanked for attending and a few other details. Then it was #BGBingo prize time. It wasn’t quite as everyone was expecting. The prize was carried out and explained what it was. There was a lot of of excitement in the room, it was a Dexcom G4 (donated very generously by Team BG) and it was going to someone from the “naughty step”, unheard of!!!! Woohoo, I was definitely in with a chance. Unfortunately my name wasn’t called out but everyone one was thrilled for the lucky winner and rather envious. Then they carried out another one! This time everyone who’d made it to the “in range” wall was in with a chance. Again everyone was thrilled for the very happy winner.
I’ve pinched this from the conference webpage.
At the conference there was also a Swop Shop table where people brought items that they no longer needed and others could freely help themselves to items they needed. There wasn’t a lot left on the table at the end of the day. Our son had had his eye on a backpack on the table but had been told no by me. As we were leaving he saw it was still there and asked again. I relented this time as most of the others had already left. He was very happy and informed me that he is going to use it on his upcoming school camping trip. Just before leaving we were all asked to help empty the goodies table so again my son did as he was told and helped himself to some cookies. Here he is with is stash.
Before leaving I caught up again with Lavina, she pointed out a few other Twitter people to me and we swopped mobile numbers and agreed to catch up sometime, somewhere in the evening. That was the end of the conference, but not the end of the day as there was the social that evening in Nottingham. I really enjoyed the conference and, if able, we will most definitely be attending next year. Looking forward to #PWDC16.
I’ll probably write another blog on our evening in Nottingham.
Thank for reading this rather long blog.
ADDITION (16-03-15) – I forgot to say that I met Emma and Rita at the conference. I hadn’t connected with these two ladies before the conference. We are now connected on social media. In fact I think Emma was introduced to the #doc on Twitter whilst at the conference. Hi ladies 😀