Wednesday, 23 September 2015
It has been over 7 months since I was diagnosed with Gastroparesis, so I thought it’s probably about time that I started attempting to get my confused, fuzzy brain around it. For me this means getting all of my thoughts out onto paper (ahh fresh internet paper) in order to make some sense of something that is utterly confusing and something that I’d much rather ignore. Unfortunately Gastroparesis doesn’t like to be ignored though!
I should probably warn you now, Gastroparesis isn’t sexy (but what illness is?). What I mean by not sexy is it involves vomiting, diarrhoea, bloating, pain, dehydration, mushed up food and a hell of a lot of tears! It’s all part and parcel of this shitty complication (no pun intended!) and sadly it comes with some pretty gross stuff. So to all of my readers… I’m sorry.
This blog is called from the top because it has taken over 6 years for my Gastroparesis to be diagnosed and, since I’ve started talking about it online, I’ve realised that lots of other people with diabetes have similar issues and haven’t been able to resolve them. So in a way I’m hoping that the blogs I write will help to raise some awareness about this condition. It still amazes me that this is a complication of diabetes yet Dr Google (other Drs are available) and myself are the only ones who spotted it. Sadly Dr Google can’t offer me diagnostics or treatment, hence why I’m writing this 6 years later than I should have. However, now the answers are officially on paper, stamped, signed and in my ever expanding hospital notes, I can finally start getting some help.
I'm not invincible
My past, as many of you know, included me being an incredibly stubborn teenager and adult and neglecting my diabetes management for a very long time. This resulted in consistently high glucose levels, ketones and admission after admission due to DKA (Diabetic Ketoacidosis). At the time I was unable to see the damage that I was doing, thinking that I was invincible (as you do when you’re younger) and setting myself up for a nasty fall in the form of a complication.
Here’s a bit about Gastroparesis that I stole from the internet:
“Gastroparesis is a disorder affecting people with both type 1 and type 2 diabetes in which the stomach takes too long to empty its contents (delayed gastric emptying). The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.”
Symptoms include; Heartburn, nausea, vomiting of undigested food, early feeling of fullness when eating, weight loss, abdominal bloating, erratic blood glucose (sugar) levels, lack of appetite, gastroesophageal reflux, spasms of the stomach wall. (American Diabetes Association).
I’ve highlighted my symptoms in blue but what isn’t often spoken about is D&V caused by constipation, then followed by constipation, followed by D&V, leading to dehydration, causing ketones etc etc. Sexy, right?! As well as the symptoms highlighted above I also had very bad stomach cramps, sleepless nights, time off work and Uni, had to cancel plans with friends and avoided leaving the house when things were very bad. As you can see, Gastroparesis isn’t just physical, it affects a person’s whole quality of life.
I went to my GP a number of times and told him about my symptoms, however he dismissed them and suggested that I was suffering from stress. “I don’t feel stressed” I told him, but as the years went by I grew tired of being told the same thing over and over again until eventually I stopped telling anyone. I coped quite well by using various strategies; over the counter medications to cure my nausea and bloating, thinking of excuses which people would believe in order to escape a night out… I was the master of disguising my symptoms until a few years ago when the nausea became uncontrollable. I was admitted to hospital two years ago, again in DKA; I was unable to eat or drink a thing and I vomited for 4 days non-stop. It was decided that I had food poisoning because I had eaten chicken the night before, however when I said that it has happened on and off for years, nothing was done. When I think back now I wonder if it was assumed by my HCPs that I had slipped back into my old ways and was omitting my insulin again. I was told that investigations were too expensive, but perhaps their thinking behind it was that there wasn’t really a gastric issue, more that I was omitting. However I wasn’t. Thinking back, this is one of those times when listening to the patient and their family is so important.
After that admission I started to speak to my HCPs again about my symptoms. I had been “back on track” with my self-management for 2 years prior to that admission and I was enthusiastic about my diabetes and confident in openly discussing my problems. It took a further 2 years of discussions, symptoms and more hospital admissions, but I've finally been given the test and treatment that I needed.
More about that in my next unsexy instalment!
Tuesday, 18 August 2015
A few weeks ago the peeps from Stur contacted me asking if I'd like to try their water enhancer. As I was about to say "thank you, that's very kind but I don't drink water", I thought back to the one and only new years resolution that I make every year and every year I break - To drink more water! My problem is that water is boring, there's no denying that. My other problem is that I drink around 8 cups of tea a day, so I don't find that I'm thirsty often.
So I agreed to try Stur and initially I wasn't hopeful that it would entice me to break my 8 a day habit in favour of water, however I was wrong. I chose to try the coconut and pineapple Stur (I love love love pineapple) and as it's summer time I thought this would make a nice refreshing change to my tea addiction. It WAS a nice change and not only was it good to try something different, but it also had zero calories and zero carbs. The fact that it has zero carbs is obviously good for my diabetes control as it means I don't need to take insulin for it, plus having zero calories is also good for my waistline! I have to be honest, I do get a little bored with drinking the same sugar free drinks all the time, so having a variety of flavoured Stur enhancers to choose from did make my drinks menu seem a little bit brighter.
It's all natural and is jam packed with vitamin C and there is a big selection of flavours to choose from. I must admit that the coconut flavour did slightly overpower the pineapple but that didn't put me off.
It comes in a handy little bottle that would easily fit into my handbag or pocket if I wanted to take it to work or Uni with me, and I found that I only needed a few drops to get the strength that I wanted (though I do like it very very weak!). It lasted me just under 2 weeks and I was using it about 2x a day, so for the price (£2.99 - other flavours vary in price) I thought it was good value.
You can check out more of the Stur products on their website - www.sturdrinks.eu
Tuesday, 11 August 2015
One day I changed, I was stronger than before,
I had accepted the hand dealt, no longer would I ignore.
I was encouraged, I was pushed, supported in my ambition,
I was a part of the force, I was a welcome addition.
What remains shared and equal, the desire to improve,
but the words, the actions, the will, is often misconstrued
So many understand what seems to be a fixation,
there's a brightly burning desire, a passionate translation
My peers, they live the same life that I know,
so similar in our thoughts, our actions and our woe.
One day I see those words, another life has been taken,
a feeling grows inside me, not passion but frustration.
As I think of those lost, my thoughts turn to fear,
becoming inwardly selfish, I hide to shed a tear.
That desire within flickers, threatening surrender,
but the bravado returns, perhaps a desperate defender.
I think to myself, what more can be done,
to protect my peers, a family losing a loved one.
I write out loud, words catching my eye,
I reach for support, once vowed to be at my side.
My words are written clearly, but interpreted not as I see,
the passion, the reality, the sadness within me.
It comes from exhausted living, the years with this condition,
it comes from trying to tell you, whilst continuing on this mission.
You see why I feel stormy, why I sometimes can’t back down,
you see why I come out fighting, staying afloat so as not to drown.
I’m scared of the fight that’s in me, but I have faith in my dedication,
what I need is that vowed support at my side, to soften my passionate frustration.
Tuesday, 4 August 2015
Recently I was asked to create a model of what diabetes looks like to me; this was to give an insight into diabetes for a medical device company.
Usually my diabetes monster is green and sits on my shoulder, overseeing what I do and always trying to have a say in the decisions I make! Sadly the company who sent me the clay didn't send any green, so instead I made this little Dare Devil. In my diabetes mind the Dare Devil grows in size depending on what my blood sugars are doing at the time; the higher they get the bigger he grows and the louder he roars! On a good day he will be small, quiet and very easy to manage. On a good day I barely notice he's there.
Monday, 27 July 2015
Tuesday, 21 July 2015
This weekend myself and my friend (and fellow Type 1) Kelly, ran the Race For Life in memory of our friend, Tanwen. Well, I say run... it was really a mixture of jogging, walking, crawling, climbing, sliding, jumping and falling! All in all it was a great day and diabetes wise things seemed to go okay for me during the race. The course wasn't the typical Race For Life course, this year there were muddy obstacles in the way, including some rather questionable pink inflatable tubes which my other half pointed out had an Ann Summers look about them! The obstacles made the race even more fun but also slightly tricky for someone who carries around rather a lot of medical equipment. The biggest risk being that the equipment that keeps me out of hospital and allows me to be healthy may become clogged with mud!
During the race I didn't see anyone else running with bags, only myself and Kelly. Luckily my other half was very kind and offered to run alongside us carrying both of our bags as well as my camera to film throughout the day. As you can imagine I needed to be as prepared as I could be in the heat with Type 1 so I made sure I had everything I needed and more.
I'm not going to go in too much detail about diabetes on the day in this blog as I have a video to put up which shows how our day went, but below are a few pictures which will show you how difficult it would have been to wear an insulin pump, test my blood sugars and eat if I needed to. I could barely stand up for all the slipping and sliding so having diabetes was definitely an extra challenge.
Keep an eye out for the video on my YouTube channel (and subscribe too!), but in the meantime I hope you enjoy our photos!
If you took part in the Race for Life this year then please comment below and let me know how you got on!
Tuesday, 30 June 2015
As some of you who follow me on twitter may have seen, I've been tweeting about my pants recently. Not because I've gone slightly mad or have become a fashion blogger (I'm still all about the betes!), but because I was sent a pair of Hid-In insulin pump pants to try out!
The lovely Katie from Hid-In posted on facebook recently that she needed a few ladies to try out her new product in exchange for user feedback, and luckily I saw the post in time. What's also lucky is that my bum is the right size for the pants Katie had to give away :) I've had my pants for a week now and I've been able to wear them twice (I'm wearing them right now!). Before anyone says it, it's never okay to turn them inside out to get an extra day's wear out of them... that's just wrong.
You may have seen in one of my youtube videos that I've used one of Katie's products before (the Hid-In Multiway Body Band) and I absolutely loved it, which was why I was excited to try this new product. I know it's only a pair of pants, but when you're wearing certain clothes and the only place to hide your portable pancreas is in the side of your bra, it's quite nice to have an extra option. As I've mentioned in the past, insulin pumps aren't very easy to hide inside clothing and it takes a lot of practice and adjusting to master the art of not having a rectangle shaped bulge. Before I got the pants I did wonder if that bulge was now going to be showing in a place where women don't usually bulge, but I was pleasantly surprised at the lack of pant bulge on display. I think I've used the word bulge far too much for one blog...
So this is the little envelope that popped through my letter box last week and I got far too excited knowing that there was another diabetes tester inside. I love that Katie adds heart stickers to the back of the envelopes - It feels like a treat has just arrived!
Inside was a letter from Katie saying hello and thanks for trying the product. Katie always writes a bit about her experience with diabetes as well and why she makes Hid-In products which is a nice touch. It's good to know that the person who has designed the product has done it because they have had similar problems and and wanted to find the solution.
The product itself is really nice - I like the detail around the edge, it's not too fussy but is still feminine. The material is very soft but also feels quite strong. I don't know about you ladies but I'm fed up with elastic that loses it's stretch (#womensproblems) but these seem very well made and look like they'll last a decent amount of time. The best bit is that they fit really well - not too big, not too small and they're really comfortable! I have quite big hips but these hug me in all the right places :)
This is the pocket - the main selling point to the product. The pocket is on the inside at the front and is more than wide enough to fit my Accu-Chek Combo insulin pump inside. I've used the Medtronic MiniMed 640G pump recently which is longer and wider than the Combo and I think it would also fit inside quite easily. As a test to see what else I could stash in there I also managed to fit in a lip-gloss and my chunky Channel blusher! I attempted to fit my mobile in as well but I was pushing my luck with that one. Obviously I didn't leave them in there... it was purely for experimenting!
In terms of taking insulin, I'm lucky in that my pump has blue-tooth which means that I can use my blood glucose meter to tell my pump to deliver my insulin. This means that wherever I've stashed my pump, I don't need to get it out in order to take my insulin. I know that not all insulin pumps have this function which would mean having to get the pump out of the pocket but I did manage to discreetly do this (again as an experiment) without anyone noticing!
In terms of comfort I've had no problems at all. It did feel a little strange at first because I've never worn my pump in that position before but after an hour or so I got used to it. In terms of how visible the pump is, I tried the pants on with a few outfits and I went to Mr T for some straight-to-the-point male advice (does my pump look big in this) and they passed the test! If I'm honest, when I ask him if any part of me looks big he knows better than to say yes, but I do trust him to tell me if my pump is showing.
All in all I give this product a big thumbs up and 5 pink stars out of 5! Thank you Katie for making another great diabetes fashion product for us!
Thursday, 25 June 2015
I'm currently making my way back to Southsea after being in Cardiff delivering a presentation about blogging and diabetes. I presented during a paediatric diabetes study day and I'm really hoping that my experience of blogging will encourage the HCPs (Health Care Professionals) who attended to encourage their patients to give it a try. It seems that understanding social media is becoming more of a priority for diabetes professionals which pleases me a lot as it's a great way to engage patients in their care! In fact, social media seems to be increasingly popular amongst all health conditions and I think it's great that HCPs are taking the time to listen and learn from patients about how and why it helps them. My diabetes blogging story still seems fairly new to me, but three years in and it's growing stronger than I had ever imagined when I published my first blog post.
You see I didn't really enter the world of diabetes until I started blogging about it, which seems like a strange way to 'get into' a health condition. I do like to be different though! I'd blogged for a while before I started this one, writing for Channel 4 and their comedy channel, e4, after my media degree. I've always enjoyed trying out new things and I've always embraced technology - it's never scared me, only ever intrigued me. I also adore writing and being creative and when I climb inside my own head anything is possible and getting those ideas onto paper is just another step towards making my dreams become my reality. Can you tell I'm a Pisces?
As I said, I didn't really enter the world of diabetes until I started to write about my experiences - that was 9 years into my diagnosis. It's pretty shocking, looking back, to think that I'd ignored my condition for such a long time, but I was in absolute denial about what I was going through. I didn't go through the stage of grief that many people experience when one of their vital organs starts to go a bit haywire, in my head nothing had changed, and I wanted to keep it that way. Out of sight, out of mind.
The turning point, and the stage when I finally accepted that my Islet cells were as useful as a chocolate tea pot, came when one of the consultants at my clinic, Partha (you guys know Partha, right? He has a blog too), found out that I blogged for channel 4 and suggested I started using social media to talk to local patients about diabetes. I'd never considered doing anything with diabetes other than ignoring it, I certainly didn't think that talking about it would make the slightest bit of difference... but I did love to write. I thought about it for a little while and danced around the idea of starting another blog, which eventually I did. I also love Marvel/DC comics/films etc and I'd always wanted to be a strong and powerful hero, someone that in reality I wasn't. I wanted nothing more than to escape the reality that I was living in... That reality, as you can imagine, was exhausting at times, due to me constantly hiding from and battling with my diabetes.
For a while I blogged anonymously, not here but on another site, talking to myself about diabetes and everything that came with it at the time. I didn't get a huge amount out of that but I soon created this blog which helped me to reach other people. That's when things really started to turn around and I didn't want to be anonymous any more. The biggest part of blogging, for me, is talking to others and hearing someone say "me too". That moment when someone relates to what you're saying and you realise you aren't alone in what you do and how you feel is an incredibly powerful feeling, almost as if I can finally accept that what I'm thinking/feeling is normal. Almost as if I'm finally giving myself permission to think/feel and not hide any more.
Blogging has also been incredibly therapeutic for me. After 9 long years of keeping all of my fears, worries and experiences bottled up inside, I finally realised there was a place to make sense of them... this blog. I soon found that spilling my thoughts on to a blank canvas and arranging them in a way that helps me to make sense and understand them has helped me to become much more in tune with the emotional side that comes with diabetes. I'm able to manage certain situations much better than before by spending time arranging my thoughts, reflecting on them and viewing them from different angles. I could never do that before I started blogging.
I have to say though, it's not all bright and shiny... Let's be realistic here. Blogging or putting yourself out there on any public platform does come with a few negatives. I've come up against internet 'trolls' who just love to criticise me in any way they can, people who go out of their way to try to upset me or try bring me down. It's just one of those things though. But turning a negative into a positive, this just builds me up even more. Haters gonna hate ;) The thing to do is not rise to it. I'm incredibly happy whilst I'm blogging and using any of my social media platforms... and that's all at to matters to me. The way I see it is it's called social media for a reason... Trolling isn't sociable. Simples.
Back to the awesome side though,,, Blogging has also had perks that I never imagined could happen. I've somehow managed to rack up a lot of hits on my blog (though I think a large number of those are from my mum!) and from being noticed online I've been lucky enough to travel around the world, meeting people that I would never have met if I hadn't blogged. I've been given amazing opportunities that I'm very grateful for and some experience that I will never forget! I've made some incredible friends who keep me and others around them motivated and I also feel that I have quite a good relationship with my diabetes team because I have no secrets from them. I'm completely honest online and I'm aware that what I say in public can easily be seen by any of them, and that's cool with me.
So that's my little blog about blogging, I guess I wrote it because the presentation made me realise just how powerful it can be and just how much it has helped me to turn my diabetes around. I know that I don't blog as much as I used to, but I'm working on it. I like to think of twitter as micro-blogging so follow my mine blogs at @ninjabetic1 - If you're considering giving it a go then I'd definitely recommend it! Start anonymously if that's what works for you, but see how it goes. It could be one of the best thing you've tried for your diabetes!
(Photos taken at the Abbott diabetes bloggers conference, Berlin - May 2015)