As we are riding through Douthat State Park, we are talking about the lake, the man made beach, camping, hiking, and my little quirks.
I have these little things about me which are kind of, well, let’s just say weird to others, however, they make sense to me.
Examples, the lake was beautiful, I would not swim in it for fear of leeches, hepatitis, bacteria, something touching me that I can’t see. I don’t like pools because I don’t like swimming in water that others are in or have been in. They may have urinated in it, spit in it, their bodily particles are in it. It’s gross. If I go to the beach, I will not swim in the water unless I can see the bottom. Needless to say, most likely that would need to be the Caribbean or somewhere similar. I do not like when people wear shoes in the house, unless they are house slippers that have not gone outside. I do not like to see people walking barefoot, my mom always told me that parasites can enter through the bottoms of your feet. I do not like for popsicle sticks to touch my teeth, there is something about the wood and knowing that it came from a tree and it makes my teeth literally hurt. I do not like drink trays from fast food restaurants of any sort. They are hazardous, this is funny, okay, bare with me here, the bottoms fall out of some and the ones made of biodegradable or recycled cardboard always cause the drinks to fall over. If you ever ask me to pick up an order for you, please do not ask for a fountain drink! I do not want to deal with the drink carrier, the dripping cold drink, nor risking it spilling over in my car.
Please do not get me started on sharing bathrooms with strangers, public restrooms, or friends of friends using my restroom! Hotel rooms, yuck. Yes my list could go on and in.
I guess that makes me a germaphobic person in some ways. That’s really not where I was going with all of this. You have a glimpse into my chaotic mind once again.
Now, here is the kicker, with my illnesses, swimming is the safest thing for me to do!
The things I wish to do are things such as snowboarding, jumping out of an airplane or riding in a hot air balloon (to overcome my fear of heights), ice skating (it’s absolutely a beautiful art). All of these things are too dangerous for me because I could hurt myself with my conditions, one exception is the hot air balloon ride.
I have autoimmune vasculitis and Raynaud’s, in addition to my rheumatoid arthritis, snowboarding and ice skating are so far out of reality for me. Jumping out of an airplane would likely break my ankles, if not, my legs.
I’m so limited to the things I want to do in life, yet there are others that take these things for granted. Then there are things that I could do possibly, such as water aerobics. My germaphobic tendencies stop me. I’m also immunosuppressed. In my head it makes complete sense that I would not want the exposure to those germs and bacteria. Oh, I also failed to mention the photo sensitivity (I can’t be in the sun, I immediately blister thanks to my autoimmune system).
It’s very difficult at times for me to have a slew of autoimmune illnesses and additionally have to justify why I can and cannot do certain things. I do understand that others do not understand fully. They also do not see the bigger picture. They see idiosyncrasies. I try to bring awareness via this blog.
There are things many people do NOT understand about Raynaud’s and (autoimmune) vasculitis. The winter or cold can be brutal. You can actually lose your fingers, toes, or nose if not properly cared for. Add diabetes to the mix!
The More You Know
Imagine your hands and feet so cold that they burn and sting, you can’t warm them up. Warming them up takes so long and meanwhile damage is being done to tissue and nerves. The pain is excruciating. All year round touching cold items is an issue. Ice, ice cream containers, soda cans, soda bottles, you get the point hopefully.
With vasculitis, Raynaud’s, and/ or diabetes, you may need special gloves, socks, shoes, compression wear, thermal insulated clothing, and lots it layers in the winter or cold seasons.
With rheumatoid arthritis, often, I can't open containers (jars, cans, etc.), holding a can opener is difficult, holding cookware is difficult, holding a container of milk, tea or juice is difficult. My hands are weak. My ankles, tendons, and joints pop, ache and swell. Walking is difficult.
Fibromyalgia burns and causes a narcoleptic affect almost on me. There are days that I sleep for 16-26 hours straight. I can become incoherent, dissociative, and shut down
There are days where I am in complete pain and my everything hurts literally. From my fingernails growing to my hair follicles. I can feel it.
It is very easy for someone to ask you what your condition(s) is. It’s another thing for those to truly understand how the condition(s) affect you and your everyday life.
Did you know that stress is the key trigger to almost all autoimmune conditions flaring? Let me just name a few to give a deeper dive:
Did you know that the weather can affect some of these very same conditions, I mentioned a couple above? There are studies being conducted now that believe stress is the actual trigger or cause of autoimmune diseases/ illnesses.
I could name an entire list of conditions or illnesses, I won’t bore you any longer. I will leave you with this. Be kind to those with invisible illnesses, you do not know what goes on in their bodies or minds. It’s a very difficult life. We most put a smile on our faces and say “I’m fine” or “Everything is Fine”.
Please feel free always share your experiences here, ask questions even if I sound as though I’m frustrated, or if you would like to be featured on our blog, you may email directly to ColorfulChaosthejourney@yahoo.com
You may also choose to reach out to groups on social media for others experiences or search the web for additional information. No two people have the same reactions to these “invisible illnesses”. I am sure though one thing we all have in common is the lack of knowledge that others possess about them and how they affect us.
Be well, stay healthy!