20 Things I Hate About Diabetes

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

 

30 Comments

  1. Tanya Cornish on December 11, 2014 at 12:43 pm

    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.

    • Helen-Edwards on December 11, 2014 at 12:45 pm

      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

  2. Jen on December 11, 2014 at 1:17 pm

    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.

    • Helen-Edwards on December 11, 2014 at 4:00 pm

      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

    • Jodie on December 11, 2014 at 5:01 pm

      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.

      • Helen-Edwards on December 12, 2014 at 7:36 am

        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

  3. Maureen on December 11, 2014 at 2:18 pm

    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.

    • Helen-Edwards on December 11, 2014 at 3:59 pm

      that is so true Maureen x very frustrating

  4. Jodie on December 11, 2014 at 4:56 pm

    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!

    • Helen-Edwards on December 12, 2014 at 7:37 am

      here here! My skin is like a crocodile with lumps!!!

  5. chris maher on December 11, 2014 at 5:16 pm

    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

    • Helen-Edwards on December 12, 2014 at 7:35 am

      no wonder you are struggling – that must have been terrible…I hope you are feeling better soon and some of the exhaustion lifts

  6. Marilyn Gandhi on December 11, 2014 at 7:37 pm

    Hullo Helen, I am t2d. You remind me I could be far worse off than I am.

    • Helen-Edwards on December 12, 2014 at 7:35 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

  7. Rhonda Plunkett on December 12, 2014 at 2:26 am

    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…

    • Helen-Edwards on December 12, 2014 at 7:34 am

      Hi Rhonda it is never easy, thanks for stopping by to share x

  8. Katherine on December 15, 2014 at 11:29 pm

    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??!

    • Helen-Edwards on December 22, 2014 at 8:34 am

      well i am saying WOOHOO and congratulations Katherine!!!!!!!!!!!!!!!!

  9. Deb M on January 15, 2015 at 3:19 pm

    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!

    • Helen-Edwards on February 18, 2015 at 10:21 am

      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?

  10. Dianne on January 19, 2015 at 11:25 pm

    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.

    • Helen-Edwards on February 18, 2015 at 10:17 am

      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

  11. Sandra K W on July 26, 2015 at 10:13 pm

    Helen, I admire you! I don’t know how you keep so positive. Thank you for creating Diabetes Counselling Online and sharing your experiences with us. I have only had Type 1 for 6.5 years and was diagnosed at 57 years of age. I find diabetes very frustrating, very unpredictable. It is really very difficult to plan anything as you never know when things will go pear shape. I resent the time diabetes takes up – purchasing and organising medications, attending medical appointments, checking out food labels when shopping, cooking most meals myself, agonising over menus when you do go out, the time to change over the cannula etc for the pump, and trying so hard to keep things going well only to have your levels go haywire. I don’t know how parents with young children with type one cope

  12. Recycled_Interiors on September 21, 2015 at 2:13 pm

    Sandra K W thank you so much Sandra, I do not know how I missed this! It is definitely frustrating and unpredictable. It helps to share x

  13. Rosiek on May 1, 2016 at 10:11 am

    Thank you. I have recently been diagnosed with type 2. I know that type 1 is so much more difficult but this is still causing me grief. I a.so watche my sister struggle with diabetes caused by Cushing’s disease from cancer. I also have sever asthma , and that’s new too! The steroids that I have to take to breathe have led to weight gain and the diabetes. They also send blood sugars up. Some days I can’t breathe well enough to do any meaningful exercise. I get pretty down trying to manage sugar levels and my breathing. I get very frustrated and just want to eat whatever I feel like. When I give in to this I feel so sick! I get so very very tired and my emotions seem to be all over the place. I don’t know if it is something wrong with me or if the roller coaster is due to my weird blood sugar levels. I don’t like that I have to be so regular with everything I do, think about what is going on in my bloodstream all the time, and watch what I eat. So I guess I need to be grateful for what I do have, technology to help, a really good doctor and that I am old enough to have a health care card!

    • Helen-Edwards on May 5, 2016 at 5:19 pm

      all types of diabetes are tough and you should never underestimate all the things you have to deal with. It is a common experience for steroids to lead to increasing blood glucose levels due to insulin resistance and to weight gain as a result. It must be so very hard for you. I know only what it is like in short bursts when I have to take steroids. I hope you have good support

  14. LizThomas1971 on May 1, 2016 at 10:21 am

    21. Spending the weeks before a endo specialist appt stressing about recording everything and what the HBa1c will be. Feeling like your about to go to the principals office! I must point out I have a great specialist, v caring it is me that puts the pressure on myself! The appointments always end up being fine! Have had Type 1 28 yrs. full time work and 2 kids its relentless. love the pump. Just did a 10km run in Canberra and preparing for it with diabetes (and overweight) was such a punish. When I reached the finish line I said to myself ‘F@$# you diabetes! See you can try very hard but you wont stop me!!!’

    • Helen-Edwards on May 5, 2016 at 5:17 pm

      oh go you!! that is an epic achievement. Yes that is a common feeling – every time I go to any doctor I feel like I am in an exam! We have to learn not to put that pressure on ourselves but it is easier said than done

  15. Trevor_J_Stuart on May 3, 2016 at 2:34 pm

    Can I add … “Tolerating daft and dumb statements made by GPs who probably mean well but do not even realise that there is a distinct difference between T1 and T2”

    • Helen-Edwards on May 5, 2016 at 5:16 pm

      yes that is a good one!

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