Living with Chronic Dis-eases: Suffering in Silence.
It’s not always something that shows on the outside but is a hard battle fought on the inside. Living with Chronic issues is something that many of us are all too familiar with. Far too many people suffer with autoimmune dis-eases and chronic pain issues in the world today.
Many who don’t suffer from any of these, sometimes very debilitating challenges, just don’t understand what daily life can be like. Symptoms may not always show up on the outside or visible to the naked eye, but believe me, there is a battle going on the inside that no one can see. It is my hope to bring a little awareness to what some of us go through on a daily basis. Now, this is not an article for anyone to feel sorry for me, I am not looking for sympathy. I only want to help others see what isn’t always visible, and also, to let others know who suffer in silence, that they are not alone.
Now, this is not an article for anyone to feel sorry for me, I am not looking for sympathy. I only want to help others see what isn’t always visible, and also, to let those who are suffering in silence know that they are not alone.
Not everyone who has the same autoimmune dis-ease is affected the same. But, nonetheless, the challenges are similar in most cases. Autoimmune disease often causes our body to pretty much attack itself. Our body is made to heal itself and fight off foreign invaders. When our immune system feels that it is in danger or senses something that isn’t ‘right,’ it goes into fight mode. It begins to attack these foreign invaders in our cells, causing our body to react in some very irritating and painful ways. I won’t go into details as to different diseases and the way they affect our bodies, trust me when I say that is too much information for this article.
10 Things to never say to someone with a chronic and sometimes invisible disease:
- You don’t look sick
- Well my Aunt, sister, cousin, has the same thing and they are fine
- You just need to exercise more
- You’re too young to have something wrong with you
- I wish I could take a nap in the afternoon
- Be patient, things will get better
- You need to stay positive
- It’s all in your head
- Don’t be negative, look on the bright-side, at least you are alive
- And my “favorite,” Everything happens for a reason
While we know that people mean well, and come from a place of caring & love, it doesn’t help for any of the above statements to be made. In truth, it only aggravates those of us who know what we have going on.
I would like to share with you what it is like in my life and some of what I deal with on a daily basis. Some of you may find that you have very similar symptoms and issues and can relate and for that I am sorry, because I know what you are feeling.
I never know when I wake in the morning if my eyes are going to be able to read my computer screen, having optic neuropathy the chances of my eyes having a flare is sporadic, they can be fine for days and then all of the sudden when I wake they cannot focus on anything, it’s not so much painful more like an irritating pressure. I do however, thank God each and every morning for allowing me to open my eyes to another day.
I have Peripheral neuropathy in most of my body, especially my legs, mostly my right leg, it burns and aches most of the time, it can go numb and I never know if it will give out on me and then down on the floor I go… hey at least the floor is always there to catch me.
I am on a very specific diet, no gluten at all, having Celiacs, even the slightest gluten can send my body into fight or flight overload and can become so sick it is difficult to get out of bed. I controlled most of my neuropathy when I found out that I couldn’t have any gluten at all. I do still have neuropathy from the thyroid.
I have inflammation in just about every joint in my body, they will become very stiff and sore if I am still for too long, but sometimes it is too much for me to be on the move all the time. My body is so tired and exhausted that, I truly have to make myself get up and move. Most of this is due to having Hypothyroidism that cause severe fatigue and weakness, along with brain fog and memory issues, muscle cramps, soreness, hormonal issues including depression, and irritability…. which come on who wouldn’t be irritated. I have found that I need to have a very strict routine, if I do the same thing over and over I won’t forget things I need to do. The muscle cramps affect my hands the most, so much so that I cannot open a jar or write because gripping a pen is hard to do.
One of the strangest things is Paresthesia. Paresthesia is tingling, burning, electric type sensation, and or prickling sensation of the skin. I get it mostly on my face around my eyes and temples and that area cannot be touched when it flares, also the hands fairly often and usually when I sneeze, for most sneezing is not an issue, but for me it sends electric sensations down my arms into my hands and it stings. I have a nodule on my thyroid so when I sneeze more than once it makes it hard for me to catch my breath. Needless to say, I don’t like to sneeze.
Throw MS in there somewhere, I am not even sure where it fits because all of the symptoms can be the same as the others with a few exceptions.
Now throw in menopause. The night sweats and hormonal changes… ugh! I was becoming so severely dehydrated from the sweating, that it was causing even more issues. I had to decrease my caffeine intake and increase my water intake.
Depression is a big thing for me, which is very difficult for me to admit. I genuinely do not like being out of control of my body, and each day it is a battle for me. Not only do I have a battle going on within the cells of my own body, I also have a battle going on emotionally in dealing with all the symptoms.
And now the latest, testing still on-going, Inflammatory Bowel disease. Not sure if it is Crohn’s or Ulcerative Colitis.
When you have 1 or multiple autoimmune disease your body is in constant fight or flight mode, there’s a battle going on within both physically and emotionally. They both can be very taxing.
I don’t talk about the issues I have, because for me talking about it brings it to the forefront of my mind and that is where my focus will go. I have learned that the best way for me to deal with most of these issues daily is just to keep moving forward and not focus on them, I know they are there but I find it better for me if I bring my focus to something else. If I focused constantly on how I felt, sheesh, I’d never get out of bed. And, I also don’t like to complain about it either and most people don’t want to hear it.
I am very lucky that I have found an amazing Dr. that understands me and knows that I know my body better than anyone. I am a highly sensitive person, so for me I feel everything more so than others, which makes it even harder. Having a Dr. that listens to me and just doesn’t throw a pill at me is amazing and refreshing, she works with me and we figure out a more holistic approach.
My body has been through so much in its lifetime, I have been ill since I was 2 years old, so I don’t know if my body will ever fully be healed. But, that is not stopping me, I am constantly looking for ways to improve my life and to be healthy for myself as well as to help others. If the things that I deal with can let others know they aren’t alone and are not crazy… because believe me I have had Dr.’s tell me that, then sharing what I learn is a blessing.
Let’s all stop suffering in silence and may we all find balance and healing.