It has been a hot, hot afternoon and son was on his end of the house resting and cooling it and I was on mine. We had turned on the swamp cooler to blow out the hot air. Keeps from taxing the AC. And I was laying here in the coolness of my room with my eyes closed resting from the hospital this morning.
Suddenly I got a whiff of something and it made me sit straight up. I sat there just sniffing for a minute and then I got it again. My feet…all four of them..LOL..hit the floor and I was headed towards my bedroom door when I felt myself snatched back onto my hospital bed. I had forgotten to take off the oxygen hose that I use when I am in bed. I snatched it off, grabbed my oxygen backpack from the bed and headed out my door yelling to son to hurry up and come here.
As son came out of his room, I kept saying..do you smell it?? do you smell it? and he stopped and looked at me and took a deep breath through his nose and grinned and said “RAIN!!!!!!” and we both turned and excitedly headed to the side door to step outside and see. You would have thought it was Christmas morning. I could feel the excitement the pioneers must have felt when rain was needed to badly for their crops…for we need it here. It is hard to imagine getting so excited over the smell of rain in the air but we were.
As we got outside we could hear the thunder and see the clouds so heavy with rain that they were black and lying low in the sky. The wind was blowing hard and the trees were bending over and occasional splats of water would hit my face as I stood looking up into the sky. The sun sails were flapping in the breeze and the small of rain was everywhere. It was wonderful and fragrant like the smell of roses when your heart is heavy.
Fires are burning in Colorado Springs. The fires seem to be contained just around there but now with rains coming…they fear because of the dry parched ground all over that we will have flash floods. I stood out there thinking about what our pioneers had to endure that we take for granted. The heat..we go inside and turn on AC or swamp coolers, the drought…we water with our hoses, flash flood warnings…we can get in our vehicles and drive to higher ground.
And yet, I felt like the pioneers from long ago were standing outside with me looking at those dark, heavily laden clouds and feeling the splats of rain hit us. Life goes on and generations live on after generations and yet they never truly leave us. I have seen this more out here when I started seeing all the people in the clouds. They are still here…just a breath away. And there are times like today when we will have memories that are theirs like smelling the rain and knowing our crops need it and rushing to go outside and see it. Life is beautiful and to me…life goes on forever..just in different plains.
This topic is one that some of us in my chronic illness group have been discussing…what does a chronically ill/disabled person do when people have misconceptions about their health or refuse to accept their condition? It is a real issue and many people who are chronically ill/disabled just feel helpless because they do not know what to do.
Many well-meaning loved ones can say and do things that make it harder for us because of their inability to accept that this is the shape we are in. They do not mean to hurt us or make it harder for us…but the truth is they do. I have friends that have cried tears of pain and frustration because of these things…I have cried tears of pain and frustration in the past too because it is such a helpless feeling when you can not make your loved ones understand how sick you really are. I have been chronically ill longer than most people I know since I started when I was 32 and am now 63 and so I realize why our loved ones do this but it still can be hurtful.
When someone implies we are not as bad as we are and we should be up doing more…it hurts and makes us feel like we have to defend our health. When someone tells us that they have a relative/friend etc that has the same symptoms that we do and they are doing just fine…it hurts us and makes us feel like those we love think we are faking or lying. When someone makes comments that our health issues are not all that serious when they are, it hurts us and we feel helpless to make anyone understand what we are suffering.
When someone who can go up and down stairs, go to flea markets and anywhere they want and they take every symptom we have and claim it as their symptoms too, it diminishes what we are going through for if they were as sick or as disabled as us..they would be like we are and not able to do things. When someone does what I call the over the top Pollyanna and makes statements like on the days we do feel a little better that it is great and must mean we are getting well….it hurts us and puts expectations on us to be something we can not and are not capable of doing and that is miraculously heal ourselves to make everyone else feel better. If we could, the first person we would do it for is ourselves and we would have already done it.
I told someone just recently that what it takes is sitting your loved ones down and saying…”I love you and I know you love me but when you say these things you make it so much harder for me. I know you want me well but I am not well and I never will be well again and so it takes all my energy to fight and keep going and when you act like it is not that bad or that I should be doing better than I am, that creates in me this feeling that I must defend myself and must explain myself over and over and sometimes it makes me feel helpless”. I have done this with loved ones and yes they were upset at first but when they realized that I knew they meant well but that it was making it harder for me, they stopped doing it. Many have cried because for the first time they had to admit that I am this sick and in this much pain and suffering and it will never be any different.
And now, I will use a real life example…me. Today I had a pulmonary function test to check the status of my pulmonary fibrosis and the test results were not good. My capacity of the lungs is a little more than half of what it was two years ago and two years ago I already had moderate pulmonary disease. They said the nebulizer medicine is not doing any significant good. I was really not shocked because of how I have been lately but the written word is a lot more impacting than what you think you know. And someone just told me to take a nap and then I would be better in this sunny Pollyanna voice. Can you imagine the impact of those words when you have just received word that you have Severe pulmonary disease and it has deteriorated a lot since the last test. My response was “no, I will not be better after a nap but I will be a little more rested”. And the words just flew on by as they made another Pollyanna remark about how wonderful that I would be more rested and how healing it was. So, I did not bother replying. I just changed the subject.
Words …even well-meaning ones can be hurtful and put expectations on the chronically ill/disabled and make our life so much harder. Tomorrow (when I am more rested…LOL) I will sit this person down and try to explain to them what they are doing to me when they do that. The person means well but it is for their comfort that they said what they said…not for mine. It made them feel better to talk like that for it helped them to deny the reality of the news I just got.
Guess I sort of became the spokes person on this topic for a small group of people who all are feeling the anguish and are trying to figure out how to tell loved ones that their denial of their illness or disability made their life so much harder and created stress for them. I do not know if all of you can understand what that is like because sometimes people take it as saying to not love us or support us and it is not. It is saying that denying we are sick or getting worse or disabled and we can no longer do what we used to be able to do hurts our hearts and takes away our fight because we feel helpless if those we love can not understand and accept how sick we are, then how can anyone else.
I guess the best way to say this is…when someone does not accept our health or disabilities it diminishes us. It makes us less than we are and we have already lost part of ourselves when we became ill and/or disabled and can no longer do what we used to. We fight so hard to prove to ourselves that we are still worthy and still have something to contribute to life but when those that love us say these type of things it can make us feel worthless and hopeless. And that is the last thing we need for the fight is so hard every minute of every day. We do not need more to fight. I hope this all makes sense. I hope it helps those who are chronically ill/disabled and I hope it helps those that love those that are chronically ill or disabled.
- Comfort foods
- Dreams for the future
- Eating Out
- Etta James
- Female Impersonators
- heart center
- helping others
- New Year's Resolution
- Protection from fraud
- Rocky Mountains
- US Military