It's just a Mis-understanding

Being chronically ill is no easy task and even harder for the person living with it. You spend half your time trying to help people understand but when it comes right down to it no matter how much you try to put it into words it never comes out right. I personally believe it is very easy for people to take my words in but I also know they are unable to process them in the way I want the to. If you think about it what is the right way to explain something that is unexplainable? There are never any amount of words to describe the life I lead. Many times you might explain but then the same person you explained something to a few months ago acts like it all magically disappeared. It doesn't. In turn you must try to explain again and hope that maybe this is the time it will sink in for them but it usually doesn't. Being ill for years is like that. It is so very frustrating. There are times I take it personal and get mad and even angry but then I pull myself around and do the self talk thing and remember that it isn't their fault. I try to understand the best I can by putting myself in their shoes I only wish they could at least try the same for me. I've learned that's not how it's ever going to work. I hear and have heard so many things that I must process and try my best to educate people on when it comes to chronic illness. I know I must sound like a broken record at times with my blog but I have to be honest, even though I write it to help others understand I write it more for myself, it's my therapist on paper. There are many times I write and I learn myself. 

Here we go again with another list of things I hear but in all reality I don't want or need to hear:

Work through the pain. Ummm no. I was at the pool the other day and we were doing  some exercises and the one we were doing hurt. Two of us said,"This hurts," and the instructor said, "Work through the pain. When you have arthritis you have to push through the pain." I immediately thought To myself no you don't. To clarify, yes you do if you have osteoarthritis but if you have inflammatory arthritis you are dealing with a totally different type of arthritis. You see, when you have inflammatory arthritis doing an exercise that hurts when you are doing it sets your body off into a flare. Osteoarthritis is arthritis of a joint. Inflammatory arthritis is a whole body system arthritis. If you do something that hurts, like your knee, by evening or the next day not only does your knee get angry but many other joints do the same thing. Inflammatory arthritis affects the whole body not just the knee. Osteoarthritis is caused by age or over use of a joint while inflammatory arthritis is caused by your body attacking itself hence the autoimmune disease. We all get osteoarthritis. Inflammatory arthritis is caused by antibodies in your blood that attack your body because they think the good that goes on in your body shouldn't be there and it attacks that part of you body thinking it is an invader. It's is a simple but very complex process. I always say my body hates me. Simple but true.

Get more sleep. I hear this all the time. If it was only that easy. It's hard to sleep when you are in pain. Think of the worst pain you have ever had in your life. Do you remember trying to get comfortable to make that pain go away? Well for us sickos we might get in a comfortable position and fall asleep but an hour later we are awaken with stabbing pain in a joint. Being awaken like that makes it very hard to number one get in another position that's comfortable and number two to fall back asleep because you are wide awake from trying to find that new comfortable position. Try that over and over all night long. No wonder we wake up feeling like we never slept.

Eat better. I try! It helps but it sure isn't a cure. With all the fresh fruits and veg right now it's easy. I know I don't swell quite as bad when I eat well but to say it cures is a big misconception. When it comes to foods we all react differently and we all must find what works for us. Plus I still want to live. I love food and enjoy cooking. Drinking alcohol is another issue when you go out. You are not suppose to drink on these drugs so when you go out you get to sit there and watch everyone else get crazy while you are straight trying to act like you are having as much fun as everyone else. It's easier staying home believe me. The real world doesn't understand this at all. Plus people are exhausting. Sorry if that's a little truthful but it is what it is. Socializing is tiring for a chronically ill person. You go out, you socialize, but at the same time your body is talking to you at the same time other people are talking to you. No wonder it is so exhausting. You always are the first one to leave a party or gathering. When you are done you are done. My brain shuts off and I just have to leave. It is what it is.

You shouldn't take those nasty drugs. Believe me we wish we didn't have to. I fought this for so long after I stopped my drugs a few years back. I fought with myself about going back on the drugs. I didn't want to but I knew it was going to happen. When I finally made the appointment to go back to my Rheumetologist the first thing my new doc asked me when I told him I had stopped the drugs was, "Hows that working for you?" I knew right then and there I was in that room for a reason, to go back on treatment. I haven't regretted even though it is still a struggle. We all hate to admit we need a drug. I was talking with my son about this. He is in his last year of pharmacy school and he made the point about something else we were talking about and said  something to the fact of do you want to get better? Take the drug. If not don't take it and continue to suffer. It helped me realize drugs are here for a reason, to help us, not to make us feel weak. I think that's what happens to us we feel week and out of control when we need help from drugs when in reality we need to turn it around and be okay with it. It's all a part of the process. Drugs are created for a reason.

Don't think about your pain. I've read how you should do something to help you forget about your pain. Find a hobby and the pain magically goes away. False! Don't get me wrong I believe in mind over matter and believe it helps but it surely isn't a cure. I also believe all of our therapies combined help us. Only we know what works for us. Each chronic illness if different and each person is different. What works for you might not work for me. It's up to me to figure that out my treatment and no one else. Unsolicited advice is not needed. If I ask fine if I don't keep your month shut because you have no idea what it is like to live in this hell. Thank you very much.

You are sick therefore you are dumb. I personally believe chronically ill people are some of the smartest people I know. We have a heightened sense of awareness. Our radar is on overload. We see, we hear, and we process everything way more than most people. Illness makes you aware. I believe since we are so use to listening to our bodies 24/7 it enhances our ability to listen to everything going on around us. Maybe this isn't true for everyone but I know it is true for me. I miss nothing which can be good and bad. I know how to read hidden messages and I listen real close to what everyone says. I hate it at times but at other times I think it's a gift.

It's never easy, any of it. Today I realized I have skipped my DMARD med for a few days. I'm guessing maybe 4-5 more or less. I decided to keep my pills in a weekly divider so all I would have to do is open the top and there would be all my pills waiting for me for the day. Problem is sometimes I get confused. I remember putting the pills in the container and I remember thinking okay they are all in there only to realize this morning I forget this one. The important one the one that helps slow the autoimmune disease. The problem is I have two pills the same color and my brain thought they were all in there. Nope. I've been wondering why my inflammation has increased this past week and now I know. The decision has been made- No more weekly containers! When I use my pill bottles I can seperate them as I take them and keep better track of the ones I have taken and which ones I haven't. Not a big deal for most but huge for me. For most people meds are a nuisance for me they are stressful but necessary. Trying to keep everything straight gets old. Monthly blood tests, doctors appointments every other month, keeping meds refilled and taking them at the right times, getting enough rest, getting enough exercise and not over doing it, eating right, taking care of myself, keeping the house clean, grocery shopping, keeping in touch with the ones I love, the list could go on. I'm exhausted just writing this. It's not the same when you are ill to just pop out of bed and do all theses things without a thought. For us it's a daily struggle. I'm not sure if any of this helps people understand more but it sure helped me unload. Thanks for listening!

God Bless!

Dianne