I call this “Sometimes” because many who have loved ones that have chronic illness and chronic pain do not really get it because they do not suffer with it themselves and it truly is a case of you have to be here to really understand. A headache or a backache is not the same thing for they have an ending. You take some med, lay down and rest and when you get up it is gone or greatly improved. For the chronically ill and those with chronic pain there is no “gone” or “greatly improved”.
I have had many ask me to write on this topic. Some who have loved ones with chronic pain and chronic illness will understand for the first time, some will never get it because it means allowing yourself to really look at the pain of another and most people do not like to do that. And some have already learned all this and are great support to those suffering with chronic illness and chronic pain.
This is me today, after five days of having to travel two days back and forth to doctors—going to two doctor visits in each day, being manipulated and limbs pulled and checked…and of not being able to be on my hospital bed with the gel mattress for pain because the men were working in my bathroom. And after a night of horrible muscle contractions that made my arms and legs look like I was a contortionists. Not a pretty sight. I do have my mojo on or I would not eve be sitting up and giving you a thumbs up. Took me five minutes and the electric bed to raise me to get me to a sitting position…but I am here….because I am choosing to sit up. But if you look into my eyes, you will see the pain I am suffering even while I am giving you a thumbs up.
So, for those with loved ones with chronic illness and chronic pain, sometimes we will put a smile on our faces but it does not mean we are feeling good. Look into the eyes for the eyes tell the story.
Sometimes we may say we are fine…that is because we do not want to burden people with our pain and suffering because usually people do not want to hear it. But, it does not mean we feel good.
Sometimes we just can not go so please do not tell us to take another pain pill. Look into our eyes and see the suffering.
Sometimes we are just in so much pain and suffering so that it takes all we have to breathe so please do not tell us how good we look. We know what we really look like and telling us we look good is to make you feel better not us.
Sometimes we are suffering with pain so badly that it is beyond imagination so please do not tell us you know what we feel unless you suffer with chronic pain every single day because you do not know. I was up with horrible spasms last night that made me look like I was a contortionists and took my son pulling and manipulating my legs and arms to get them to straighten out and relax. The pain was horrific. And yet, I have had people tell me the following:
“oh I know just what you mean. I have muscle spasms all the time. I am sitting here right now stretching my foot out to get the cramp in it to stop”.
Now having read that line above, does it hit how really insensitive and self-absorbed that comment sounds to someone who suffers with horrific pain and muscle spasms every day? It always amazes me how people want to say they have what you have but have no idea. Chronic pain means daily…never goes away…no ending in sight. The person telling me that they had the same kind of muscle spasms I have can get up and walk unassisted, go up and down stairs and out and do things and yet for some reason, they want to tell me they have the same thing. I have found that people like that want to have just enough sickness they can claim to be really sick but not enough to stop them from living an active life.
Sometimes we do go somewhere because it was so important to us. No, it does not mean we feel good. No, it does not mean we are well. It simply means we choose to go because if we do not, we will miss the experience totally. That dance recital of our children or grandchildren comes to mind. And yes, we will pay a big price for that choice.
Sometimes the simplest thing is too hard for us. Please do not act like we are being silly or pretending for I can tell you that last night when I finally got to my bed, I could not even sit up and put my own socks on. To the well or those with just a few health problems, that sounds simple and it is for them. For me, I could not. I could not even pull up my covers so that I could go to sleep. Everything was all used up in me at that point. My son had to do it. And I hurt so badly and was so exhausted that I could not go to sleep. All I could do was lay there hurting. I wanted a drink of water and could not lift the cup. Simple things and yet sometimes I have been around those that could see me struggling trying to do it and never once offer to help because they would later tell me they felt it was good for me to have to do for myself. And because of that attitude of some people, we will not ask for help. Please do not assume you know what is best for us because we have been through so much and been through all the doctors and treatments and we know what we can and can not do.
Sometimes we can laugh and talk and cut up and sometimes, the effort and the noise is too much for us to bear. Sometimes people think that because we are ill and can not do anything that they can dump all their problems on us but those same people do not want to listen to us when we need to talk.
Sometimes we need to talk about the pain and how we are feeling for it helps us deal with the pain and sickness and not feel alone in it and sometimes we do not talk at all about it. Being chronically ill can be one of the loneliest places in the world sometimes.
Sometimes we roar loud and clear and fight tooth and nail to keep going in spite of chronic pain and chronic illness and sometimes our roar is a whisper. It does not mean we have given up. It means that we are still giving all we have at that moment and sometimes that is a whisper.
Sometimes we are able to do our hair and fix up a little bit, maybe put on some makeup and sometimes it is all we can do to get up from the bed. Both are still fighting modes for us. We have not given up we are just doing all we can at that moment.
Sometimes we can focus on the things in life we need to take care of and sometimes we can not. One does not mean that we are being lazy or not trying. It simply means that is all we have to give at the moment. Such exhaustion and pain is the worst when the idea of getting up and taking a shower and washing our hair is more than we can handle at that moment. That is hard for people who are not chronically ill or in chronic pain to understand for it is easy for them.
Sometimes it would be so easy to just give up but for most people with chronic illness and chronic pain we do get up and go again. I did not want to get up this morning. I thought just let me lay here and bury me when I am gone but that thing called “hope” and that thing called “drive” helped me sit up on this bedside and write this article. WE who are chronically ill and in chronic pain do not like to take the easy way out. Please recognize the fight in us whether it is a roar or a whisper for both are giving all we have at that moment in time.