Today I’m feeling about as old as Bugs and Daffy look in this picture I colored a while ago. I’m only 35 years old, but it often feels like I am much older physically, thanks to the chronic fatigue syndrome and fibromyalgia. My husband currently has the flu and when he was telling me how bad his body aches and fatigue were, I couldn’t help but think that I’d never be able to tell the difference from my everyday body aches and fatigue. In fact, with my chronic ear and sinus infections, the only way I ever know for sure if I actually get a virus is if I am running a high fever. Otherwise, I figure it is just my normal daily crud I have to deal with.
Sometimes it is easy to forget what it was like to NOT feel sick all the time or hurt constantly. I can’t even imagine living without it all now. I’ve become so used to the routine that I’ve accepted it in a sense and admitted defeat in my own mind. That is likely not a good thing, considering that I feel I’ve lost all hope to ever feel healthy again. I’m not writing this today to try to illicit sympathy or just to whine, but it is what I’m thinking about and dealing with, so I felt it only honest to share. If you are a fellow sufferer, let me tell you that I am truly sorry you have to go through all this as well.
I think the title is pretty self-explanatory as to what the video below is about. Just wanted to share. It is a part of my life, a part of who I am.
Hello everyone! So today I’m sharing a book review vlog video I made yesterday. For anyone who has Chronic Fatigue Syndrome, Fibromyalgia, or similar chronic illness, or who has a special interest in those subjects, this book might be something you would want to check out! If you have already read the book, let me know your thoughts!
Well, I’ve officially started allergy shots. Not long ago they conducted a skin allergy test on me to see if that might be contributing to my chronic ear/sinus/respiratory infections. They had already once run an allergy blood test on me (which showed I was only allergic to dogs), but they said the skin allergy test was more accurate and wanted to see what it read. So, I took a week off from all allergy medicines (which was awful in itself in many ways…and who knew that going off Zyrtec could cause withdrawal symptoms???), and then went for the allergy test.
They ended up poking me almost 100 times, checking various strengths of 27 different common allergens. By the time the lady had gotten to the third round of testing (around the 60th shot), I was really struggling to make it through. Fibromyalgia makes your pain response to anything worse anyhow, and getting stuck that many times can begin to feel like some kind of medieval torture device. By the end, my arms looked like cheese graters, with rows of holes all over them.
I waited a few minutes for the nurse to tally the results and found out I was allergic to 22 of the 27 things they tested for, which means 3 vials worth of shots that I’ll have to take for the next 3-5 years. While the ENT doctor does not think this alone is at the root of my chronic infections, she definitely thinks it could help.
The thing that frustrates me greatly is that I was tested for all this stuff by blood test a few years ago and it only showed ONE allergy! How in the world could the blood test be that inaccurate that it didn’t show one other allergen, when I am allergic to at least 21 other common allergens to the point that I need long-term treatment? I know for a fact many of the things I tested greatly allergic to in the skin test WERE also things they tested for in the blood test. In fact, for the skin test, I tested LESS allergic to dogs than many of the other allergens that didn’t show up at all in the blood test! How could the first test have been so inaccurate, and do physicians know exactly how inaccurate the test can be? If so, it sure would have been nice if someone would have told me back then. Maybe it could have helped prevent a few years’ worth of pain and suffering!
I’m curious, has anyone else had both tests and had such widely varying results? If so, did anyone ever explain to you why? I would sure like to know for myself.
Tonight was a bad night. The pain, isolation, and despair came crashing down so hard and fast that I crawled off the couch and collapsed onto the carpet, on my side, in a loose fetal position and just wept. I gripped the beige carpet fibers in my fingers and pulled as the tears pooled below my cheek. I pinched myself. I aimlessly pummeled the floor. The anger exploded in that way it always does, boomeranging right back into myself. I considered my options. All the ways it could end. The option of reaching out for help. The feeling that grasping for that help would only inconvenience others. After all, my husband has to work tomorrow, he needs his sleep. I can’t take the car, who would bring it back to him?
Eventually, I made my way outside. Hoping the cold would numb it all. I walked on the icy, wet grass and then took a seat on the deck stairs. Soon my feet were frozen numb, and my body curled inward, instinctively seeking to conserve its heat, even as I wished that I could bear it long enough to freeze. Dark thoughts of black toes breaking off soon made hypothermia a less attractive ending. If only it were like a Jack London novel, a slow nodding off into warm, cozy whiteness.
Eventually, I found myself back where I started, on the couch, hoping to find comfort on electronic waves, here in the place where lost things seem to gather in today’s society. I soon stumbled across someone else crying and hugging a giant stuffed giraffe and it soothed the edges just a little. Now, I can only hope tomorrow is brighter.
To churches and church folks everywhere:
Unfortunately, I have heard too many stories from fellow chronic pain/chronic illness sufferers about mistreatment at the hands of the church or church people. Some of these people even end up losing their faith or abandoning church altogether because they are hurt so badly by the apathy or mistreatment they feel from their spiritual family. I myself have experienced some similar things in the past and I would like to make a few requests for all churchgoers to consider, especially those in leadership positions:
- Please don’t ignore or mistreat those in your church with chronic illness or chronic pain conditions. Don’t think that just because they can’t always make it to church or participate in activities that they don’t want to. Don’t accuse them of just being lazy, selfish or antisocial.
- Please do reach out to them by making a quick call, a short visit, connecting on social media or dropping a card in the mail once in awhile. If you have never had a long-term chronic illness or injury, you may not know how lonely, depressing and rough it can be.
- Don’t think or comment that since they don’t look sick on the outside, they must not be sick or hurting. Many illnesses and injuries are invisible and even if a person doesn’t look like they are in pain, it doesn’t mean they aren’t. Many of us get so used to the pain that we don’t normally talk about it or even show it on our face anymore, but that doesn’t mean it isn’t felt.
- Remember that mental illnesses like depression and anxiety can be just as devastating and debilitating as a physical illness. Also remember that depression and anxiety often accompany a chronic physical illness or injury, which can compound the problem and make it even harder for a person to function normally.
- Don’t play doctor and tell us what you think is “really” wrong with us or tell us what we need to do to “fix” ourselves. Your intentions may be good, but most likely we have already visited various health professionals and tried anything and everything to try to fix the problem and find relief. If you constantly tell us what we “should” be doing, it can make us feel like it is our fault we are sick or in pain because we aren’t doing enough to try to solve the problem, which is normally entirely untrue. And NEVER insinuate that our illness/injury is caused by a lack of faith or that God is “punishing” us for one reason or another. First of all, that isn’t your judgement to make. Would you want to hear that when you are suffering? Treat others the way you would want to be treated if you were in their shoes.
- Lastly, try to find a way to “include” us even when we can’t be there. Share photos on FB or by email with us of events we had to miss. If we can’t make it to a special dinner, bring us by a doggy bag of the yummy food we missed. Let us know we are missed, but don’t try to make us feel guilty for what we can’t help.
I really wanted to write some kind of deep, thoughtful post that would make you all say “wow” and possibly change a few lives…but unfortunately, I have absolutely no inspiration for that type of thing right now, so instead, I’m just going to share a few personal things that are going on and one of my recent artworks. Hope that will do ok.
First off, I do want to say that I am thrilled that it looks like several of my artworks will be featured in an upcoming book entitled “Uncommon Minds, A collection of poetry and prose created by individuals on the autism spectrum”. Also, I have a few poems that will be featured in a poetry anthology coming out before too long (I will share more details on that when I can). So luckily, my art and writing career seems to be flourishing and that makes me exceptionally happy. My next goal for my art is to have at least one piece exhibited in an art museum. It gives me something to work towards 🙂
I am also hoping that if my health improves enough I may be able to teach art/writing classes for kids once again. I really miss working with kids and just having fun with them. Unfortunately, this plan is on hiatus until my fibromyalgia and chronic infections calm down a bit. I have been given 5 courses of antibiotics for various infections since the beginning of November (a couple of the antibiotics I was allergic to which caused even more issues), so needless to say, my health has not been all that great. However, I am thankful to have such a great husband to look after me and that I am able to work at home.
As promised here is one of my recent artworks entitled “Red Eye Fright”. It was inspired by a collection of short horror stories I was reading recently. I wish I could find a book of horror stories that I actually found scary. Sometimes I think I have become immune to terror.
“Red Eye Fright”
To see more of my art, or to purchase this piece, feel free to visit my ebay seller page or just search for “MRuss art” on ebay.