Wellness Wednesday: Staying Active In The Summer With Diabetes
I am a 43 year old malevliving with GP, IBS, Type 1 Diabetes, and Hypoglycemia. I currently have someone helping me 2 days a week with laundry, shopping, and doing things around the house. I can sometimes do things on my own when I am actually NOT in pain. But, most of the time. I am either doing things WHILE in pain, or not doing anything at all. It truly depends on the level of pain I am in. Unfortunately, as of June 16th, i will no longer have someone helping me as the program will be coming to am end. I am going to be looking for a way to get more help after June 16th. Anyway. I just wanted to introduce myself to the group and say that I am very glad I was invited. Hope to talk to some of you more in the future.
Jason S. (CoolJay)
Why I created living with hypoglycemia
So I’ve been in a mental crossroads of sorts and finally have some time to get my thoughts together.
The main point of this group is to share knowledge and stories about this way of living that many people don’t understand the hardships of. It’s also to get rid of the stigma about having hypoglycemia just from diabetes and skinny people needing to eat more.
My personal story for creating this:
So in high school I was failing math and was told to have the first 15 minutes of my lunch break as a study hall; well I kept clear vomiting during that period. My mom took me to my monthly stomach doctor appointment (IBS and GERD) thinking it was related to my stomach issues, after some blood test and a physical exam showed no sign of diabetes or obstruction she told me that I was having hypoglycemia. She said that with my body size and metabolism that I need a consistent flow of complex carbohydrates and sugars and protein in my body to keep my energy intake from dropping. I was given a doctors note to allow me to eat in classes and so I began to drink protein shakes and fruit juice and granola bars, plus keep glucose tablets with me at all times.
As the years went on I kept a list of symptoms of hypoglycemia with me so I’d know what to do and warn people that if I start acting a certain way to force me to have a break and eat something. I even told people that I say angry inappropriate words when I get that way and showed them the websites that prove that it’s a real symptom.
Now to the most recent incidents that made me breakdown to create this group:
Before I lost my full time job I was having hypoglycemic episodes there just about once a day (note that it was a toxic workplace environment with toxic people at it’s core) and my coworkers did nothing to help. My body had gotten used to a break schedule where I got 3 breaks every 4 hours on a 12 hour work day, it was this way for a year and a half. Out of nowhere management decided to change the break schedule and told me I couldn’t eat or drink during work. My body went into shock and I began getting: cold flashes, dizziness, pale skin, tremors, muscle weakness, painful headaches and cursing. Every time this would happen my coworkers blamed it on my behavior telling me that I was in control of what I was saying and doing. I went through glucose tablets every day and soon they stopped helping, one time my tremors were so bad I couldn’t open them. My boss told me to get a glucose monitor but that wasn’t covered because I’m not diabetic. My coworkers kept saying “well we haven’t eaten and we’re doing fine” or “if we can’t get a break then you can’t either”, “you’re being unreasonable”. I even got a doctors note saying I had to have regular breaks to eat because of my medical condition but my coworkers thought it was unreasonable and an excuse for me to do less work, my job coach (I’m on the autism spectrum) even said it was an unreasonable accommodation that isn’t covered by the American’s with Disabilities Act or the Job Accommodations Network. I got so mad about this I started to have frequent verbal altercations with my boss and coworkers. I threatened to go to the ER for glucogon and was afraid of getting hypoglycemia blindness in the future.
When I got fired from there I was kind of relieved because I could have less episodes and eat regularly. Unfortunately when I went to Disability,Aging and Rehab Services to reopen my employment case my case manager told me that I will most likely never find an employer to allow me breaks and eat during the job, she told me it was unreasonable and for me to get over it.
I wanted to scream at her. After that meeting I realized that consistent hypoglycemia is not a recognized disability and that I can’t be the only one to live like this.
Food and Nutrition Friday: Food Deserts & Food Insecurity
So after the SOS post I did my boss seemed to be fine with me; she told me to forget about that day and to do busy work while I wait for patients to finish eating and even helped me with my worker’s compensation claim for being admitted to the ER for suicidal ideation. I am holding a grudge against the coworker who caused the incident and plan to ignore him. I will never forgive him for the pain he caused and shall act as though he is dead because to me he is.
Well my job coach came by and talked to me about it last Thursday and now I might need a new one. She told me that my attitude and behavior is what’s causing the problems and I’m a hypochondriac for looking up things about autism and my physiology. She claims I can control my meltdowns and that I fake blacking out. She thinks me disassociating isn’t real and that even when I get hypoglycemic I can control my actions. She also thinks I’m abusing the accommodation system and that texting my mom during our meetings isn’t normal but rude.
I try to calm down when I feel a meltdown coming on but I get in trouble for leaving my coworkers when I need a breather. I use all the things it says online to calm down but sometimes I just burst from keeping it in. I even try to eat small snacks but some of my coworkers don’t think hypoglycemia is real and tell me to wait. I get overwhelmed and then black out, see myself in 3rd person and when I comeback I cry because I can’t believe I lost control. This only happens frequently at my full time job, my part time job coworkers know my triggers and how to respond to me. My job coach never seemed to educate my managers about my diagnosis and blames me for everything that happens.
I want to know if my actions are normal for autism/NVLD people and if disassociation is a real thing. How can I educate my job coach about this and should I look for a new job coach and a new job? Is this behavioral or my brain being wired differently?
Collagen XII Bethlem myopathy 2 Congenital Muscular Dystrophy
Bethlem-Like Myopathy/BM2 or Collagen XII disorder, CMD?
At first I thought "well, this sure does explain the muscle weakness, but I wonder why it's considered a congenital muscular dystrophy. Wouldn't I have had symptoms growing up or be worse off than I am now? I think I'm fine. I can beat this and just keep strengthening while I can and maintain as long as possible!!"
I saw the Neuromuscular specialist last week and he was so kind and took as much time as was needed to explain the diagnosis of how the "bent collagen protein strand" causes muscle to die because the protein cannot break down and rebuild properly.
In all seriousness, this new disease is like so many of my other rare diseases: minimal -no information regarding the disease and they are all on a spectrum.
I'm thankful mine is mild at the moment and hope it stays that way!
There is so much to learn about this diagnosis and my others that I know little about.
Thankful it's not an "unknown". I lived with the "unknown" for many years (7-10+) treating multiple diagnoses improperly.
The non-surgical dumping syndrome, was treated as a diabetic or regular reactive hypoglycemia and made me worse until proper diagnosis. The ME/CFIDS was unknown and we exercised until I couldn't move, talk, or stand up. As was this diagnosis that could have been made worse during that time not knowing we were doing more damage.
I know with a congenital muscular dystrophy/COL12A1/Bethlem myopathy 2, ME (Myalgic Encephalomyelitis), dysautonomia, TBI, ADHD, Dysautonomia non-surgical dumping syndrome/rapid gastric emptying (look it up-all you'll find is surgical dumping syndrome or GP), Bilateral Vestibular Loss, Migraine (+vestibular migraine), Pineal Cyst, and many more, I should feel really crummy, but I don't.
I learned how to smile and remain positive from my friend with BRCA 4 (she passed Dec 2020) & that YOU have control over your chronic illness/disease and how you react to it/everyone else in a positive manner.
I have learned from many years of these rare diseases that no one (other than those who have it) will ever understand you and to not expect others to understand what you are thinking, feeling or going through.
I feel very blessed that my symptoms are mild, manageable now (For all diagnoses!) and I can move forward despite any obstacles God throws my way!
I can only do the best I can with what I have to work with.
I have worked very hard to find a self-care routine that works for me-specific exercise, diet, meditation, ST/OT/PT/VT despite many diagnoses having opposite treatments (BVL-stimulate and stay active as possible; ME/migraine/CMD-monitor energy levels, avoid overstimulation, and PACE self!
My SLP (Speech therapist) and I have a saying:
So I encourage you to be mindful, grateful, compassionate to yourself, and find out how can you turn your diagnosis(es) positive each day!