This was originally posted to my old blog on October 9, 2014
What does it feel like to be a diabetic?
I’ve been asked this question and many questions like it many times in my life and it is not an easy question to answer. For every diabetic, it is different. For me, the question is multileveled. What does it physically feel like? What does it emotionally feel like? What does it feel like when I’m high? Or low? What do the many complications I suffer with feel like?…etc…
Imagine being a traveler and no matter what, you always have one more piece of luggage than everyone else. And this piece of luggage is permanently attached to you, and it is very, very heavy. And it does nothing but cause you trouble, worry, heartache, and more work.
Emotionally, diabetes feels like anger, stress, heartache. But it also feels like, triumph, joy, courage. I won’t lie, I never lie; for me the many, many years I have spent being diabetic it has meant feeling so many more bad feelings than good. When I was a kid, I was scared, angry, and embarrassed all the time. I was frightened of what having a disease meant, I was petrified of having low blood-sugars. I was angry that I was different, I was pissed that I couldn’t eat what normal people took for granted. I was downright livid that I was restricted in so many ways. I was heartbroken to see three of the five type I’s in my family die from this terrible disease. I was defeated at the thought that they took care of themselves, and still died. I am currently constantly fighting the sorrow and desire to just give up. Every time I make positive progress with one complication, another one crops up. I feel so worn down.
These bad feelings have always been lightened by the good feelings. I love the feeling I get when I check my blood-sugar and it is in the ideal range. Take that, diabetes! I win this time! I love the joy that comes with going to bed at night and realizing, “I felt good today, my BG’s were good all day, it wasn’t a difficult day”. And sleeping through the night without waking up with a low. I love knowing that being diabetic has made me a stronger, more courageous person. I can face anything and know that I can handle whatever life throws at me.
Physically, diabetes itself doesn’t feel like anything. But it causes a lot of physical sensations. When I’m high, I feel almost like I’m coming down with the flu. I feel dehydrated, crampy, and generally icky. I feel tired (in a lazy way). I may get nauseous, too. If I go into diabetic ketoacidosis, then these symptoms will get much worse, and I’ll also get dry mouth, my breathing will become shallow and rapid, and my breath will smell like ripe fruit. None of these symptoms feel pleasant. Frankly, I have described the feelings of high BG as “I feel like I want to rip my body away and escape it.”.
When I am having a low BG I feel tired in a weak way. I feel like I am about to go into a panic, I have feelings of urgency but I just can’t get up the energy to do anything about it. I feel shaky and unstable. I feel sleepy. I may feel super hot or super cold. I may break into a sweat. My vision goes dark, and in some cases I go completely blind. I feel tingly and numb in places. I may act drunk. I may lose consciousness.
Diabetes can cause a lot of other health issues, we call these “complications of diabetes”. Mostly because I didn’t bother to take care of my diabetes for 20-some-odd years, and partly because these things just happen, I have a lot of serious complications of diabetes. These complications come with a lot of feelings, both physical and emotional.
Diabetic Retinopathy – Emotionally this eye disease causes a lot of fear and worry. I don’t want to go blind! Frustration and heartache over loss of independence ( I lost my driver license). Physically there usually isn’t any pain or sensation that comes with it. But the surgeries can cause pain. I’ve had four surgeries on my right eye and most of them came with minimal pain; but one, the one where the nerve block and other pain managements wore off half way through…that was agony. Right now I am half blind because my right eye is filled with oil, so vision is very blurry. And I have permanently lost the peripheral vision in that eye. Currently my left eye is doing well.
Coronary Artery Disease – This disease emotionally causes a lot of worry and fear. I don’t want to die! Also the frustration that comes with loss of independence while healing from surgery. And the even tighter restrictions of diet. Physically it causes a whole lot of pain. Chest pain, shortness of breath, nausea, dizziness, weakness, headache. Not to mention the open heart surgery and three month healing time. The painful nerve healing along the huge scars, and numbness along those scars. The painful process of rebuilding muscle strength in your chest and arms. I am grateful though, that the pain is gone now and my heart is healthy again.
Frozen Shoulder – Emotionally it is a frustrating condition. The loss of movement in your shoulder makes you feel trapped in your own prison of a defective body. Physically it is painful and restricting. You can’t move your arm properly, you can’t lift it all the way up, or across, or out! And it hurts like the dickens! Plus, you lose strength so you can’t even use it to pick up fairly heavy things with out feeling like (or actually) you are going to drop them.
Bad cholesterol and high blood-pressure – Emotionally these conditions come with fear and worry. I don’t want to have a stroke or heart attack! Physically, I have never had any symptoms. But I have felt more frustration from the dietary restrictions.
Neuropathy – Emotionally this condition is full of fear, worry, frustration, heartache. I don’t want to be in pain! I don’t want to lose my legs! I don’t want to go numb! Physically this condition does so much. Pain, aching, tingling, burning. Numbness. Bladder issues (thankfully no incontinence, yet), dizziness, loss of coordination…Mostly I am effected by the leg pain, I have to walk a lot because of losing my driver license because of my vision problems, and it is so very painful.
Then there is the constant doctor visits, and procedures, and surgeries. Sitting in a waiting room gives you a lot of time to think about how sick you are, how much time you have to take out of life to go to the doctor. How many scars you have (emotional and physical), how much your body is just crumbling to painful bits around you. How tired of it all you are…
Then there is all the medications and the emotional and physical effects they have. It’s never any fun to have to take medicine. You worry about side effects, you worry about forgetting to take them or if you accidentally overdose. You feel the frustration of having to be tied down to the medicine.
Insulin – This is taken because my body does not produce its own insulin. The only side effects I ever have from insulin is low blood-sugar. I have developed a lot of scar tissue at my injection sites. this is common for diabetics after so many years of injections. Injecting at a site that has scar tissue can make it more difficult for the insulin to absorb and may result in high blood-sugar.
Lisinopril – This is taken to protect the kidneys from failing. It is also taken to lower blood-pressure. The only side effects I have experienced from this is a runny nose on occasion.
Pravastatin Sodium – This is taken to lower cholesterol. I have not experienced any side effects from this that I am aware of.
Clopidogrel (Plavix) – This is a blood-thinner. I have had a whole host of side effects with this. Not all of these am I certain are related to this drug. Mild chest pain, bruises, swollen ankles and feet, nose bleed, difficult urination, shortness of breath, difficulty to stop bleeding, very heavy menstruation (like the floodgates of hell).
Metoprolol – This is taken to regulate my heart-rate and to lower blood-pressure. The major side effect of this drug is that I have developed the inability to “feel” when my blood-sugar is dropping or low. This side effect is beginning to wear off, though.
Low dose aspirin – This is taken as a blood-thinner. I have no side effects from this.
Prednisolone – This is used in my right eye to reduce irritation as I heal from my latest eye surgery. I have experienced no side effects from this steroid.
Cyclopentolate – This drug is used to keep my pupil dilated and eye muscles relaxed as I heal from eye surgery. The only side effect of this drug is a mild burning sensation when I first put it in.
Muro – This solution is used to draw moisture out of my cornea. I had developed epithelial failure after lens replacement surgery. The only side effect I have with this solution is that it stings when first put in.
Gabapentin – This drug is taken for neuropathy. It is used to relieve nerve pain. It has not done anything for me yet. It has manifested side effects in me such as dizziness, forgetfulness, and mild gas.
So, you see, there are a ton of feelings both emotional and physical that come with being diabetic. Diabetes isn’t an illness like a headache or broken bone where there is just a very singular issue. No, diabetes is all consuming, it is everywhere and in all parts of a diabetics life. And it is forever. So, you can understand why it is so emotional as well as physical.