Keeping It Real (Chap 11)

"I just love people who are so self-righteous. You just keep going ahead and judging me and I'll keep praying that you never really feel how I feel physically. If this is just a glorified way to feel sorry for myself or to continue to live negatively to gather the 'attention' from others, than I get it and you can quit bringing it up. " {Facebook Status from August 27, 2010}

Up until this point, I have kept this story and this journey about myself. I am going to do a little bit of something different here and going to bring in some other voices during this one chapter. I'm not doing this because I want to "bash" on anyone or make anyone feel bad. I also am trying to do this as positive as possible.

Until I started having chronic pain, I really did not understand others who lived with chronic pain. Until I had experienced doctors who were condescending and lackluster, I did not understand why people who had serious medical diagnosis 'went off the beaten path.' Until I had gone through a traumatic time myself, I did not understand what it meant to "shut up" ~ literally. If I did not want to tell people what was going on, it was my right. Yet, if I chose not to spill my story, then there probably was more to the story and I had to respect all. Looks can be deceiving. People love to spew all the time, especially over social media, "Until you walk a mile in my shoes, DON'T JUDGE ME!" But, I have to admit, the funniest thing I saw, and probably the most truthful post, was a person who said "I'm too lazy to walk a mile in your shoes, so I'm just going to judge you today." I'm not saying that it was funny in a "Haha...laugh to my sides hurt" funny but a funny in a "it's probably the most truthful thing anyone has ever posted."

People judge. Perception is the number one thing that does it in for me. You see a 5 second clip on TV and you've already decided on the guilt or innocent (most likely guilt) of someone who has been arrested even tho in this country we were built on the premise of "innocent until proven guilty". It is like that with chronic pain. In this country, we have to show our pain for people to believe our pain, but show too much pain and they get tired of it really fast or they really don't understand to the point of becoming frustrated with us. Then, they tend to shut down.

By August of 2010, I was getting the "we are not going to take it any more" from you. Some of it was from family. I even received a really hurtful, hateful letter from an extended family member. I admit that I did not handle it in the best of ways. However, her use of language and lack of understanding was uncalled for during that time. Suddenly, I had become the 'bad' guy in all of this. If I could go back and do things differently, I might have but I still feel like it was just handled all wrong by both parties. She did not know probably even a quarter of what I had went through or going through. She was young but that did not excuse her behavior. I'd like to say it made me tough and want to fight through it all but it sent me into more of an anger/depression. I think they (the family) were trying to do what they thought was best for me (or maybe they didn't really care) and the family. I really don't know. Maybe it made them feel good to finally tell me after all those years how they really felt about me. All I know is that it just made things a lot worse for me mentally, physically, emotionally and even with all my relationship. I really couldn't trust anyone any more including those who I was closest to. {I'd like to add a side bar to all of this. If you are reading this and are contemplating sending a note to a loved one about their disease and how they are handling it or not handling it, I would tell you to think long and hard about it. Those words are still out there. I just re-read them again today. They still hurt just as much today as they did the day I received them. You may think you are doing the person you love good, but it will hurt them deeply. Written words are forever. Your loved one needs your support but they don't need your 'tough' love. Also, if you feel the need to say things to them verbally, always make sure to have another person present. I know my medication makes my perception off balance at time. If you ever feel the need to present 'tough' love to your loved one, do it with thought and when you are not overly emotional. Do not do it in writing. Just love your loved one and support their decisions. I say that all based on my own experiences.}

I have started to realize that not everyone was being cruel either. Sometimes they were just ignorant. Ignorant of my situation. Ignorant of the way the body works, how my medicine works, and the specialty of my doctor. There are times that I have to bite my tongue and nod. However, I would like to add if you are reading this if you are not fully up to date on any one's medical history, medicines, surgeries and such, please don't hand out medical advice unless you really are a medical doctor. It is so frustrating to me to have someone say "have you tried this drug? or that treatment?" Sometimes it has nothing to do with my problem or situation and to explain it all to you would take days. I'm not being rude, just real. As another IH related to me (and I think all IHers would relate to this), we do not complain every day of headaches to glean sympathy from you. We really do have headaches every do. It's part of our disease. I know that hearing about it every day gets tiring. People would understand if a cancer patient had nausea every day from chemo. It's not sympathy we are looking for and we are not being rude, just real.

Another IH named April said "I have a "What I wish you would know..." What I wish you would know is that I don't feel overwhelmed, hopeless or helpless because of Intracranial Hypertension and the other illnesses I deal with every day. I feel this way because it's so hard to find a doctor that is willing to listen, ponder and explore. When medical providers throw their arms in the air and tell you there is nothing they can do for you time and time again, it's hard to not feel like you're alone. That's my "I wish you would know."

Here's one from my friend Karen who has chronic pain do to Fibromyalgia "Just because I don't whine 24/7 doesn't mean I'm not in pain; it's because I doubt anyone wants to hear it...and I don't want to give in to the pain. Just because today I can work in the flowerbeds today doesn't mean that I can do it again tomorrow. The fact that my house is not tidy is not a reflection on how I was raised or how I want to live; it's a reflection of my illness."

One of the biggest blessings came that summer when my aunt and two of her youth from her church's youth group came and did some deep cleaning in my kitchen and bathroom. The house had gone downhill since I had gotten sick. When you live in chronic pain, your house and cleaning seem to be the part that takes the biggest "hit." It was so nice to have a clean house. However, I have also took several "hits" over the last couple years because I have been at home and yet I cannot keep a totally clean house. Cleaning house takes a lot of energy. I may be able to clean for a couple of hours but that could be JUST the laundry or JUST the kitchen or JUST the bathroom, etc. The entire house is never cleaned at once. I hear all the time "Get your kids to help." I can but it takes just as much energy to get them to work and to get one area cleaned as well. Then, it is the same problem. The entire house is not cleaned at one time. One of my dreams is to one day have a non-for-profit cleaning business that goes in and cleans your house or helps you clean your house when you have sickness even if you are able to work a full-time job. I know my one aunt has Chron's. She works full-time but it is so much energy that it hard for her to come home and clean as well. I would like to offer the service to parents that have sick children as well. You WANT to live in a clean house, but it is hard to do when you live with a energy-sapping illness/disease/disorder day in and day out.

Here is the response from my friend Mel who had a brain tumor and has lived with is lasting affects for the last 5 years (these are responses from a question I asked on Facebook) "Well I completely agree with Karen for one thing. Another for me is since I have some memory loss along with my brain injury, some people think I am stupid and I am not. I may forget easily, stumble across words and even sometimes over react because my emotional center is damaged as well but people really are quick to judge or use me as the butt of jokes sometimes because of those things. A lot of times I laugh it off and sometimes I even make fun of myself but it's really not funny. I don't think people realize that. It's frustrating and hard to deal with sometimes. Can you imagine not remembering certain things about your kids when they were younger? or becoming so overwhelmed with "normal" every day life that you completely shut down? Or even struggling some days with a headache that is so bad you can barely remember a simple sentence? All of these things are very real for me."

Memory loss is so hard for those of us living with disorders like Mel and mine. The medicines that I am on also cause problems with cognition. One of the most frustrating things for me is spelling. Things look right and I may post things or even print them. Then, I come back and see all these spelling errors. Some words were even spelled/misspelled in the same sentence. It looks so random and 'crazy' to me. I does bother me and bother me a lot. I, like Mel, will laugh it off but I don't understand. The other day I posted a date on Facebook and it should have been the current year but I posted "2010". Why did I not catch that?!? It really bothered me! I don't know if it is a misfiring between the eye and the brain or if it is in the brain itself. The more people know and understand, the better it is for me. I am not a product of my spelling/grammar errors.

Here is a response from my friend Pam who has a diagnosis of Lupus "Big one for me that Karen mentioned, just because I can do something usually physical today does not mean I can do it tomorrow!! Every single day is different. Flares come without any warning and stay as long as they like...no control over that!"

It is hard to be dancing one night and be limping the next night.

Then, there are the parents of children who have disabilities. My friend Carie has a daughter who has auto-immune deficiency. She shares, "I'm not a crazy, control freak, over protective Mom just because I don't let my daughter go to story time at the library where kids share toys. My daughter has immune defientcy & hot croup 4 times n a month & a half from that place. .... I don't enjoy taking my daughter constantly to the dr, I just want her to always hear me tell her I love her. Shes 2 1/2 yrs old & has had 3 sets of eartubes put in. She's going on Her 4th. Have you ever been told by a dr "Sometimes w/ a sick child it can feel like 3 children." I have, but I wouldn't trade her for anything n the world!!"


As I stated before, not being rude, just keeping it real.

We all struggle. We all fight for are small piece of the world. We all have a purpose. Just some of us struggle, fight and have to find our purpose with a broken body. I don't understand fully as to what the reasoning is behind all of that is. I once described it as a puzzle. Our lives are a puzzle. We don't have the picture to look at to know how the pieces go and fit in. We pick up the piece and try it here and there. Sometimes we try to cram a certain piece just knowing it has to fit but it doesn't. Yet, when several piece fall into place, the picture becomes a bit clearer and we look back and *sigh* with contentment until we start putting another piece into place. Sometimes, we need others to look at our puzzle to help fit in the pieces or take out the pieces that don't fit quite right. Sometimes we just need someone to smooth a bumpy one down a little or roughen one up to fit a little better. Regardless, our puzzles are beautiful pictures. We are not islands alone drifting meaninglessly. You have me and I have you. Never let us forget that. We are here for a reason. Never let anyone make you feel that you are less than. If they won't walk a mile in your shoes, it's OK. They are the lazy one. Not you.