Repeat performer worthy of it
This is a repeat perfomance of a blog I posted a few weeks ago, but it bears repeating because it is a topic all of us with chronic diseases have to deal with on a daily basis. I did add more to it so it is not entirely the same post as before. Please read and understand us better… thanks!
It is just another day here in my life. I have had a difficult week. This flare is really causing me pain in my joints and in my head. I have gotten out and tried to do some things this week but the heat is also my enemy. Yeah, I know, I gripe all the time. For you normal people, it would seem that way. For those of us with these diseases though, griping is our way of letting the anger go, the anger that we have these diseases, they are incurable, and we have to live with them.
This anger we feel, because some people misunderstand our pain for laziness, and think we want to get the attention. That is not true at all! We are genuinely ill and with no cure, we are facing the rest of our lives with uncertainty. The wars raging on the inside of our bodies are not visible on the outside but they are still there, causing pain and discomfort.
So, do not judge us, please try to understand us. We cannot “buck up” and overcome our fatigue, pain and disease. If we do that, we are setting ourselves up for a backlash from our bodies. To a degree we can buck up, but the results are often days of pain following. We have had to learn to listen to our bodies cues, and if it says rest, we rest. If we are able to participate, we do that as well. We make plans knowing that we may or may not be able to follow through with them.
So please, try to understand and do not pressure us to do things or think we are less because we cannot do certain things on certain days. We feel bad enough without judgment from others. You see, stress can tilt the cart over even faster because we are made to feel inferior. Please listen, read and try to use empathy when dealing with us. We want to do the things others can do! We wish we could do things when we want to do them! It just is not possible to do it all the time.
We kick ourselves enough for our own inadequacies, we do not need another person kicking us too. Thanks for taking the time to read this and hopefully understand a little better why I may not do all things YOU think I should and can do.
UGH
Ok, so I admit it, lately I have not been blogging. However, the reason are many and also why I needed to be blogging again… a paradox but true. You see, I am in a flare and it has been particularly ugly. That being said, I have also been on steroids again to treat it.
I have been feeling pretty bad. Even with prednisone. No matter what I am taking. It sucks. Big time.
This flare is making me miserable and no getting away from it, it is a bad one for me. I cannot move at times and I lay down and sleep at all times of the day. I am having pain in my joints so bad I cry. I hurt when I drive, my ankle joint hurts. I really have downplayed it but this is a bad one. Add the misery of this heat and humidity, and I feel like never getting out at all.
Many of my fellow lupies have been having issues too, so I am not alone. This disease will not win!It can take my life, but not the living of it!
I know, I am complaining again, but if you felt like I do, you would be crying I tell you! Normal people have no clue how painful it can be just to get up and walk to the bathroom. Simple acts, like getting in and out of a car can bring excrutiating pain in the joints and therefore, are not to be done unless absolutely needed. Fingers throb in pain from the act of typing. The headaches from the prednisone tapering off are horrible! Now, add to that, having to try to act like you are not in pain, and you have my life.
My family is supportive in so many ways. My sons seem to cope better than my daughter, but they get it, all of them. Some days their mom is out and about and having a great day, and other days, you cannot get me out the door. Plans can be made, but only with the disclaimer that I may not be able to do them when they arrive.
I have to try to keep all the doctor appointments in line and make them but if they are not on my calendar, I forget about them. The memory is having issues, not like alzheimers, but all of my memroy, sometimes, odd bits will be forgotten, then reappeaar again. No rhyme or reeason. I hope the neurologist will get to the bottom of it. I have my emg this week, oh joy… and of course, the moving. Gee, wonder why I am so sick?
I am sorry if this is negative, but it is truthful and if I am not truthful, then I am lying to myself.
The bright spots in my life are my grandchildren. They give me a reason to hope, to believe, and to live. I am blessed to have them! I am thankful to Jehovah for them every day. My friends are another of my blessings. I have some outstanding people in my life who help me in so many little ways that they may not even be aware of doing it. They are my heroes and keep me fighting each and every day.
I guess I hope that if someone reads this and is one of the “normals” or people without lupus, they would see that life in our shoes is not pretty, or without substantial pain, but it is lived despite these things. I used to like helping others when I was normal, now I am thankful for those around me who give me help when I need it! I may look like I am not sick, but the war inside my body rages on and it is up to me to decide to have a good attitude or not. I cannot control the disease, however, I cannot let it control me. Yes, it hurts, yes, it is hard to live with, but I refuse to let it win!
I seem to be a little flighty tonight, but that is also what it can do to you. It is called brain fog, and it is a medical condition associated with lupus. This rapering down on prednisone is rough too. Forget about my fat “moon” face and the unwanted weight gain, the fact that the pain returns as you taper down is enough to make you cry! Then the mood swings from the drugs is there as well. It can be up and down and all around and if this is rambling, you can see how it can affect us! It sucks. Lupus sucks.
For today, I am choosing to be happy, and smiling, and loving. If I try hard enough, maybe the pain will give me a few little breaks and I can feel as normal as I can for a few minutes! If not, I will smile through it and wait until I see my neurologist and rheumatologist this week and see what they think… I will keep you updated!
