Sometimes I get sick of telling people that their diabetes will be ok, and they will be ok, and everything will be ok. Not because I don’t believe that to be true, I do. I think everything WILL be ok. But damn it, diabetes is NOT always ok. I am exhausted at the moment- are you? It is that whole end of year , nearly at Christmas, we can see the finish line thing.
My 6 year old Maxwell got up today and fell asleep on the couch for a minute or two, and then jumped awake shouting, “I wasn’t asleep!”He gets that from his Dad. 
And my 15 year old couldn’t manage day 4 of work experience. I know his problem.
The thing is, not only am I exhausted from working bloody hard and sleeping very little all year. I am exhausted from managing diabetes. Do you know what I mean? It has NOT been ok. I have had swings from highs to lows and sudden hypos that freaked me out and stubborn highs. My gut problems from gastroparesis continue to play with me. And some days lately I have felt like maybe it WON’T be ok…..
So here are 20 things I hate about diabetes (coz we all have to get this crap out sometimes – try it, it helps!) Feel free to share and comment if you feel the same or want to add to the list
1) It’s so damn unpredictable and never ending
2) Finding spots for finger pricks after 35 years and up to 20 tests a day is pretty hard – you should see my fingers, they are a mess…..
3) There are no perfectly 100 % accurate blood glucose monitors and do you KNOW how much difference a 1 or 2 mmol reading can make to some of us with type 1??
4) My skin is stuffed and finding sites for my pump continues to be a delight of each and every day
5) Hypos, especially sudden ones where I go under 3 mmol freak me out
6) Hypers, especially unexpected ones where I go over 16 mmol freak me out
7) People ask me all the time in airports to “take the pager off” as I go through the scanner
8) It is exhausting
9) The general public don’t get it. They think it is simple.
10) It has damaged areas of my body that I am terrified will just get worse…
11) Exercise is a debacle, you need a PhD and even then your theories will be challenged every time you go out for a run
12) There is no spontaneity
13) Leaving home to go out involves lugging a suitcase with you
14) Carbs Carbs Carbs you are such a challenge – can’t live with em, can’t live without em
15) I worry that my children will get diabetes
16) I worry about losing my blood machine or breaking my pump, or forgetting to put it on after a shower – being reliant on machines to keep you alive is stressful
17) It costs a LOT and we should have a concession card- all of our lives
18) It keeps me awake at night- sometimes sitting up to make sure my levels are not too high or too low before going to sleep
19) All the “I quit sugar” people give me the shits
20) It is for life. It isn’t going anywhere fast. The promised cures never come. This is IT.
Rant over.
Oh and you know it WILL be ok. It always is in the end. But sometimes you just gotta get this stuff out. If you are feeling like me- please comment and share. You will feel better trust me and at least we know we are all in it together next time you are sitting up at night, or screaming at your blood glucose machine.
Helen
xx
Helen Edwards has lived with type 1 diabetes since 1979. She is Mum to 3 sons, the founder of Diabetes Counselling Online, a diabetes educator, social worker and PhD Candidate studying diabetes distress in pregnancy for women with type 1 diabetes. She is also a successful Interiors Blogger and Stylist at www.recycledinteriors.org and runs creative workshops, an online store and studio in Adelaide – just for a life outside of diabetes.
Some days i just want to have a vacation from it…..to run jump swim eat what and when i want. Just one day off. One day off from from my pump from my tester from my foot problems from my medication. One day to just be.
that is so true Tanya – I have thought about going off the pump but the alternative is not attractive – we have the rock and the hard place. Hear you sister. xx
I hate how it changes who you are. I wonder what I would have been like physically as well as mentally without it. Slimmer- definitely; taller – probably; happier – without depression; more outgoing, spontaneous, more successful in life with more money, more self-esteem, a better marriage, more respected and not talked down to and put in the too hard basket. I feel like I died at age 11 when I got it and all my dreams for the future with me. I feel I am just a diabetic.
Oh Jen, it breaks my heart to hear that. I wonder if you have anyone to talk to, to find a self outside of diabetes? It is so important xx
I couldn’t agree with you more, you’ve just written the whole truth. Its also I think that we knew what life was like before diabetes. We were so normal in the way we felt and worry free.
that is such an important point Jodie – knowing there is another life….and seeing other people just doing what they like when it comes to having dinner, or going out for a walk or to the gym…knowing for us it is never going to be like that. Hugs x
I HATE that you can do everything right and get poor results, as well as all the things you mention, apart from not having a pump nor a CGM.
that is so true Maureen x very frustrating
I hate it when the piece in my skin from my pump isn’t working and the waiting period to see if it is working. The daily hypos and thinking you’re being judged at work because you need to check your blood. The airport having to explain that I cant go through the scanning machines. Lastly give me my healthcare card! Im working to pay for my diabetes crap! Not Fair!
here here! My skin is like a crocodile with lumps!!!
Having just got out of hospital from a DKA, hperketonacidosis, and not diagnosed till I was 38, 4 yrs ago I’m hearing you with your 20 and struggling with “the disease” at the moment. Just exhausted
no wonder you are struggling – that must have been terrible…I hope you are feeling better soon and some of the exhaustion lifts
Hullo Helen, I am t2d. You remind me I could be far worse off than I am.
Marilyn thank you for reading and taking time to share – we all have our own struggles and wonderful things and all are just as important- wishing you a wonderful day x
I never get it right… so over it… Yep and people who just give up sugar give me the shits to.. I wish it was so easy…
Hi Rhonda it is never easy, thanks for stopping by to share x
Today I hate…telling my family I’m pregnant for the first time and seeing the regret and dread on their faces.. When do I get to celebrate these milestones in life like any normal person? And the guilty feeling over my own behaviour or words said when someone says or does the wrong thing when I’m too high or too low, and then the consequences.. Now if I snap at someone or stand up for myself, my ‘diabetes is playing up’.
Life with diabetes is a carnival ride, a hybrid seesaw-carousel. Can we stop yet??!
well i am saying WOOHOO and congratulations Katherine!!!!!!!!!!!!!!!!
My husband battles Type 1 everyday so I can totally relate to this and thank you Helen for your honesty! While Im not the one who has to go through these things, being his other half (who is very heavily pregnant at the moment) means I’m left helpless when he experiences all these 20 things as I cant make anything better. I hate it! That said, I’m deeply thankful for a husband who looks after himself and wants to live a long long time… I still hate diabetes though! The pump is supposed to make things better right? NOT! We’re struggling and it sucks. Hats off to anyone who uses the pump and has a “normal” life and social life. How on earth do you maintain a social life since eating out since carb counting becomes hit and miss all the time?!! Sorry ranting here!
Hi Deb – thank you so much for sharing. Yes it is also hard on family members and partners. You hit the nail on the head. What issues is he having with the pump?
Thanks for your rant Helen. I have been ‘diabetes angry’ since diagnosed 28 yrs ago – a term coined by my family for my short fuse whilst growing up (sympathise with Katherine above). I also have coeliac disease and hashimoto’s – so trying to eat low GI and GF is sometimes impossible. It is difficult to explain to anyone who is not diabetic (everyone I know) when you’ve just had a hypo and all you want to do is rest or that your high has drained all the energy/life out of you. It can be very frustrating!
Fortunately I started on a pump and CGM sensor 6/12 ago and have noticed a major improvement on what I thought was good control. We can be grateful not to carry around ‘druggy’ syringes anymore, have access to the internet/global health information and a large abundance of easily accessible healthy food.
I had to lug around a tissue box sized glucometer to school when I was 5. Technology is always improving and I’m sure managing diabetes will become more user friendly and less costly in the future.
Listening to and supporting each other is a great help for living with diabetes.
welcome and thank you for sharing your story – I love the term diabetes angry! I think i will add it to my repertoire!It must be so hard with the gluten free as well. So many things to manage