Life is so simple isn't it? I'm not talking in the big realm of things but more in a physical sense. Most of the world gets up, even when they don't want to, has body aches and pains and moves on. Once they are up and around they are able to function on a somewhat normal basis. I dream of being one of those people. Is it possible? I will continue to believe that it is for me and others I know who suffer and for those I don't know.
I had the bright idea to paint the kitchen table and chairs and now wonder what the heck I was thinking. I had been doing okay getting by day to day with the normal, normal for me stuff, but then I painted the table. My neck has decided it didn't like the fact that I tackled such a big project. I did it last Thursday and have been paying dearly ever since. The strange thing about having one part of your body decide to turn on you is that is sets off a whole number of issues along with it. My neck became inflamed which has caused so much more. Why can't it ever be just one thing? Oh ya the autoimmune response. You forget that it is a whole system disease and not just a one thing at a time disease. The worst part for me is when my neck goes out it causes me to live in some kind of a weird head fog. I feel like I am in a bubble almost floating along and not really here. I think my brain becomes so overloaded with the pain it shuts down to some degree. I can hardly talk to anyone because truthfully I really don't want to. It makes it ten times harder to put on the fake "all's good" face when you are not yourself and suffering hence even more exhaustion. This is when I get more down and wonder how I can do this any longer. I know I have to but I really don't care when it is like this. It makes me want to give in and throw in the white towel. I know I can't but it is what it is. I need a few things at the store but the thought of going out is painful to even think about. Driving, walking in to get the stuff, checking out, and driving home will kill me. Hard to believe to a normal person. I know. I understand why too because when I have these setbacks it is hard for even me to understand. Then I look at my house and I know I need to clean but I know I can't, at least not today. I tell myself it's okay and I know all the dirt will wait for me until I can do it. It's okay. It's okay. This chronic illness is just as much a head game as it is a physical game.
Lesson in all of this? Who knows. I think to myself why do you do it to yourself? The table was fine it really didn't need to be painted. I know that but I also deal with the fact that since I don't work or get out much I need to feel accomplished like everyone else does. I can look at my table all done and think to myself I can still do things that the normal world can do. Yes I suffer but the point is I can still do it. No one can take that away from me except me. If I crawl in a hole and never have projects or those little accomplishment then what is the point? Hobbies and mental stimulation keep me going. If I have something to do that helps me feel better in all of this physical pain and it makes life worth moving forward. I think that is called human nature to some degree. I know this set back will pass and I know another one will be right there waiting in the wings but I will not allow them to stop me. I now have six chairs that need to be painted next to match the table but don't you worry none I will get those done too! I hope you can keep pushing on too my friend!
Tuesday, April 14, 2015
Yesterday I was stewing about something that happened at a doctors appointment at Christmas time, which was four months ago. I came to realize I have been angry and holding all this anger in over the treatment at that appointment. I didn't realize how much those comments really affected me until I read an article on doctors who patient profile. The ones who either look at you or your chart and make the assumption you are either lazy or can't possibly be happy when you are over weight. There are so many other points that could be hit on here but I feel this is what my experience with this doctor was. I went in for a blood pressure appointment need I say more? Probably not but I will. I was asked if I like taking pills. Yes, "Do you like taking pills?" came out of his mouth. Little did he know who he was dealing with. The what comes to my mind comes out of my mouth person that I am said, "Does anyone like taking pills?" I think I caught him off guard but oh well if you can disrespect me I can disrespect you. Game on. Then I got the exercise lecture which I know and have heard a million times so guess what came out of the pie hole? "Do I look stupid?" Shocked him again. He said he wasn't implying I was stupid but from my view that is exactaly what I felt he was implying. I always find it odd and somewhat amusing when I see a doc or a person for that matter who has no clue as to what my history is but they feel it okay to give me their opinion on something they know nothing about. Things that me me go Humm Humm Humm. It was strange because Rich was with me at this appointment because we had to finish some last minute Christmas shopping. When we left and got in the car the first thing he said was, "Do not listen to what he said he was rude and you do a good job considering what you live with." He always knows the right things to say but being a person who is a slave to illness you take all those rude and unnecessary comments from people who don't understand, personally. My world is small, very small, much smaller than the normal world. My life is getting through each day not worrying about the next thing I have to do. It is one minute at a time. It is endless planning in my head. When I have task I have to do I must have a detailed plan on how I will accomplish that task. If I have a doctors appointment that is pretty much all I can do that day because it wipes me out. When I have to deal with rude doctors who dont understand and put me in the same category as everyone else it stresses me to the max. If I could have them live in this body for a week I can bet they would be begging for their life back. Their ability to jog or swim laps in a pool for an hour ah what a dream that is for me and when they tell me I need to do the same the anger wells up inside me. Writing this blog helps me to try to make some kind of sense out of comments like that so does the fact that I will never see that doctor again. I must admit most of the time I can't understand and truthfully I don't want to. What I learn is that I must continue to have compassion for others no matter their situation, no matter what I think they should or shouldn't be doing. It's not up to me just as it is not up to anyone else to tell me their opinion or to profile what I live with when they have no clue. As I pondered on this for so long it reminds me of the OOM doctor I had who was amazing not only because he helped me feel better but because he understood. He got it. He would tell me not to be so hard on myself and not push myself. He understood I really wanted to be like everyone else. He never made judgements or told me I didn't do enough. He understood chronic illness and did his best to help me and his patients feel better even on the days it meant you made it out of bed today. I struggle with doctors so much not because they say things they are suppose to but because I have a hard time keeping up with all I am suppose to be to them. In someways I don't think I will ever understand it but I'll keep on trying.
Wednesday, April 8, 2015
You know how companies have a logo? McDonalds has the big yellow M and as soon as you see it your brain automatically tells you McDonalds. It's funny how are brains are wired to recognize logos. A while back I was looking at the emoticon faces on my phone and I came across this face 😕. I was actually looking for a face to send to a friend in a text. I wanted a face that explained more than just a face but her true emotion and that is when I came across this 😕. I didn't send her this face but after I finished the text I went back to this face 😕 and stared at it for some time. I thought to myself this is life with chronic illness. Some of my thoughts went like this: Every morning when you wake up from a night of pain 😕. Everyday just trying to make it through the day being normal knowing all the while you're not 😕. Every time you have to answer the question, "How are you?" 😕 man I wish people just wouldn't ask that. I'm not fine and I never will be 😕. Every time I am weak and so fatigued I can hardly do anything but rest 😕. Every time I start to believe that I am lazy or no good because I can't do what real people do 😕. Every time I have to put friends off when they want to go out 😕. Every time I am expected to be the strong one when inside I'm the weakest 😕 or as I call it living the lie. The lies of living with chronic illness not because people don't understand but because they just don't have the time to 😕. I have come to believe that people really do think you are the same person you were before you became ill but believe me you're not 😕 no matter how good an actor you are 😕. My list could go on as I am sure yours could too in whatever you deal with on a daily basis.
I sure don't want to sound like downer Dianne just real Dianne because it is what it is. After years of this it begins to wear you down. I fight it, I do, and my life really is 😊 but the personal reality of knowing this is forever is more of the 😕 than the 😊. I know in the end all the pain and grueling fatigue will be gone 😊 but right now it isn't and that's just the way it is 😕. Every day I 😕 But I must 😊 because there must be some reason for it all, right? Hope! I know I use that word a lot in my blogs but it's all I have. It's all anyone dealing with chronic illness has. The belief that life is 😊 even in the midst of the 😕. It is an inside job. You can have it all and still struggle but you have to keep the hope of a brighter day.
So 😕 take that 😊😄😃😀 because you will never win as long as I have air in my lungs 😛.
God Bless and keep on Fighting! 😊