How Hard it is


(lisajyorke) #1

Hey everyone. I have never felt so alone this battle, I know i have the support of my family and friends but as hard as they try. I feel so bad because they will never fully understand. I am writing on here looking for support because I am currently suppose to be having 3 monthly check ups with my G.P. and i have not been back for 4 months. I am going back next week but since the last time i caught up with my Paediatric doctor I have had the flu for the last 17 weeks and I don’t know how or what to tell him or my nurse at my next appt. Is it possible to want to be put back in hospital to want to be back stable and on track? Can I be that sick? I have had 3 blood tests in the last month for all of my aches and pains and nothing has come back clear. I now have the pressures of 5/7 days of my week dedicated to netball. I am less than impressed with my blood sugars can not seem to keep them in range. Looking harder and more in depth to try and find a way to avoid this disease and the dating thought of it being life long, enough to make you want to curl up in a ball forever and cry. I never know what to tell my parents and friends and what not to tell them. Its a terrifying thought.


(Samantha) #2

Hey I completely understand how you feel alone. I do all the time and it is the worst feeling. Everyone tries to help but like you said they will never ever understand. I honestly think you should just be honest with your doctors because they only want to help you. I hate going to them too but what else can we do… I am crippled every single day thinking about the fact this is lifelong. I think there is no way I can live with this for the rest of my life, but if I honestly have to I want to try to some extent to be healthy. Your doctors are going to help you and they should completely understand. I am so sorry you are feeling this way, but please know I am here for you and am right with you. If you ever need anything, even just to talk, please message me!


(Teresa) #3

Hi I am a Mom to a type 1 child, who has had it for one year now. While I don’t have type 1, I live with it every day. I can relate to the ‘feeling trapped’. I want to encourage you. EVERYONE on the planet has something they must deal with. Life is not fair. Some people suffer more than others. You have to face this reality, make peace with it and live your best life. If you need a support group, find one. But, don’t quit. If you can find hope, then you can not only take care of yourself but find meaning to your life and actually bless others. Imagine the poor parents whose baby has type 1 and they cannot even tell them when they are low? or high…If you need to write back for help, please do. Teresa - type 1 Momma


(joe) #4

@lisajyorke Hi lisajyorke,

when overcome by sadness, loss of energy, loss of joy in the things you know you like to do, and even aches and pains, it’s time to consider depression may actually be worse than diabetes.

i get it. I was shocked when I got sick. It was a brutal, unforgiving, a 1-way door you find yourself on the other side of. You spin and wonder what YOU did to get sick, what you did to deserve to be punished, and why the world that seemed on your side yesterday is out to kill you today. Then comes either numbness or profound sadness. For me it was self hatred and shame, as I was sure this was all the result of something wrong that I did.

going back home or the the point of origin or the the scene of the crime (the hospital) is pretty common I think. you lay there with an IV and they come and give you insulin and check your blood sugar, bring you meals and you get visitors. it’s “autopilot” if there is such a thing. it’s the removal of a burden that kind of weighs you down every minute of every day.

anyway, I can’t make you feel better. but I can tell you I’ve been there. talking about it helps. doing something… anything… a fundraiser, a JDRF walk or ride, anything… helps too. If you have access to a therapist, it can be a lot of help in getting you from where you are at to a place of acceptance is a big help and probably the only thing that’s going to make it tolerable…

your family goes through a lot because it’s terrifying and brutal when you worry about another, but it’s likely that people who share this with you like the people here on T1n understand in a different way.

hope you check back in and tell us how you are doing.


(Dennis Van Hoof) #5

Dear lisajyorke,

We all experience these setbacks, and it is the toughest to deal with if you feel that you are not understood. But the replies to your post also show that you are not alone in this.

Many people who are diagnosed with a life-long disease go through the 5 stages as defined by the famous psychiatrist Kubler-Ross: (1) Denial (2) Anger, (3) Bargaining, (4) Depression and (5) Acceptance. Even when accepting that this is what your life will look like from now on, you may still frequently fall back to stage 4 when facing tough times. I know for sure that I experience this, so I know exactly how you feel!

But diabetes also offers us a reason to be extra organized, and bring structure to our lives to live a healthy and active lifestyle, so that we can manage our blood glucose better and reduce the chance of developing complications. Bad glucose levels are known to affect your mood, and it is difficult to get out if this vicious cycle. But there is hope; others have walked the path to success before you, and there are many resources out there that may help you follow their journey to success.

While it sounds so simple to live a healthy life, it is unfortunately not so straightforward to actually do the obvious. But once you start implementing healthy foods and a solid exercise regimen, you may find that you start feeling better and more energetic, so that you enjoy life again.

Best,
Dr. Dennis Van Hoof, PhD, CLC