Tuesday, September 9, 2014

Just One Thing I Did Not Know About Chronic Illness

sitting in a wheelchair next to my son

I have lived with an invisible chronic illness for most of my life, but until I became very ill in 2004 there was something I didn’t know about invisible chronic illness. I didn’t know just how hard and physically challenging it truly could be. I didn’t know how exhausting it was to do what appeared to be easy tasks.

I used to think that if someone had a wheelchair because of fatigue that they felt okay while sitting in the wheelchair. Now I know better. When you have a chronic illness, it can be absolutely exhausting to sit in a wheelchair.

I used to think that if someone was tired that they could ride in a car easily enough. You’re just sitting after all. That is resting, right? Now I know better. It takes a lot of energy and muscle strength to sit up, especially when dealing with turns and bumps in the road. When I was healthier I never realized how many muscles I was using to sit up straight in a car and not fall over when we hit a bump or turned a corner.

I used to think that one could push through fatigue and keep going even though it was hard. It was possible to keep moving even when tired, wasn’t it? Now I know better. It isn’t always possible to keep moving. Sometimes the muscles give out because of fatigue. Sometimes pushing through fatigue means that you won’t have energy to get out of bed the next day. Sometimes fatigue can be so extreme that the simple task of washing your hair is impossible.

I used to think that if someone looked good and was smiling that they must be feeling well. Now I know better. It is possible to smile just because you are happy, not because you feel well. It is possible to smile even when you can hardly see because you are about to faint. It is possible to smile through headaches, intense pain, nausea, weakness, and fatigue.

Invisible chronic illness looked a lot easier when I was only mildly affected. I didn't know how hard it was for others. Looking back, I am amazed at some of the people I knew who lived life with severe pain or a very disabling illness. They lived with joy. They delighted in life with all they had. They worked harder than I ever realized, and probably harder than I even realize now. They taught me lessons of courage and joy by their examples. They are my heroes.

Invisible Illness Week JUST ONE logo

You can find all of my posts for Invisible Illness Week here: Invisible Illness Awareness Week 2014.


Janie Hovda Farrens said...

Good reminder for us all to have more compassion and understanding about others' limitations. Thank you!

Rachel Lundy said...

Yes. I cringe at some of the things I said and did years ago when I just didn't have a clue. But that helps me to be understanding and compassionate now when I am the recipient of unintentionally thoughtless comments or actions. I was once in that position!

Linda Chapman said...

You're so right, Rachel. And add to that, that moving from one place to another, even though a short distance, can take every ounce of effort you might have. That's it's almost impossible to look up & greet others as you move, because your entire being is focused on getting where you're going without falling. That just taking a shower, and/or shampoo your hair, (like you mentioned), can be more than one can do. That you might not want to attend gatherings because it takes more effort to get ready for them than you have stored up. That, (as you mentioned), if you do these things, it may take several days to recuperate, leaving the rest of your life's duties undone. That the effects of chronic pain & weakness is overwhelming....it effects every thought, every move & every emotion. It effects your judgement, your ability to concentrate, to be cheerful, or to be hospitable. It leaves you well tuned to what the priorities in life really are.

I'm so grateful our Lord knows our frame, suffers with us, & knows what brings Him glory. You are a blessing to all of us, Rachel, & your precious children are fortunate to have your example in their lives.

Vivien Lee said...

I couldn't have put this better myself. Thank God for God, who sees and knows our inside as well as the outside.

Linda vdM said...

Rachel, you've said it the best!! And it is possible to smile and even laugh at times in the midst of this. It's such a tightrope we walk (sic) trying to cope with our bodies, and at the same time not bore anyone with the daily, monthly, yearly ongoing pain. I have encountered a sense of disbelief of the severity of my pain from others when I've laughed.

Janie Hovda Farrens said...

I've gotten tired of explaining how I feel most of the time when people ask. I'm so blessed because I have so much better symptom control than you do, but when folks ask how I'm doing and I'm honest about a struggle, the next reply is usually something like "Wow, you look so good!" (I think they think someone with chronic pain/fatigue would look like they're on death's door or something. Then there is an uncomfortable silence, and I usually say "Well, thank you" to their comment about looking so good.) Chronic illness can be very lonely, and is a constant battle for me to tell myself it's okay to look normal and feel lousy. I'm VERY thankful for my mom, who shares much of the same symptoms I do and has dealt with these issues longer than I have.

As for you, I have always admired you and seen your perseverance and cheerfulness as an example to follow. Thank you for sharing your experience. :)

Rachel Lundy said...

Hi Linda,

Thank you for your comment. You are right about it being possible to laugh in the midst of physical pain. I am grateful that my pain is usually mild. You have my admiration for living and laughing through severe pain.

I have never seen that quote and image that you shared. How neat! Thanks for sharing!

Blessings and joy,

Rachel Lundy said...

Hi Linda,

That's a very good point about walking a short distance taking every ounce of effort you have. Sometimes I use a wheelchair just because I can't get "caught" standing up in a line, talking to someone, etc. Thank you for sharing your thoughts and experiences with us.

How wonderful that the Lord knows us intimately and is sovereign over all these things! May He be glorified!

Thank you for your encouraging words here today.

Blessings and joy,

Laura Hembree Bacon said...

Rachel, you have said it so well. I still sometimes tell my husband that I don't understand why I can't "will" my body to get up and move, how can a body just be so fatigued it literally won't work?. I guess I shouldn't be so exasperated that others don't understand it when I'm living with it and I don't understand it myself. Like you said, I had no idea that sometimes it's impossible to just "push through" a task ~ maybe something that others take for granted like taking a shower and washing your hair... I had no idea how much energy this actually takes and that sometimes it's just impossible.

Another thing I didn't realize is what you mentioned about smiling through the pain, weakness, etc. I'm sure I've judged people in the past based on this assumption. But, I've found that because I dress nice, put on makeup, and put a smile on my face when I do make it out in public, people automatically assume that everything is okay. They also seem to think that the illness is behind you and you must be on the road to recovery because you have a smile on your face and look so good. They have no idea what the smile, makeup, and clothes might be hiding. Or that the effort of "pretending" to be fine and being out will probably cost you weeks of intense pain and fatigue ~ in bed, going nowhere. But, since they just saw you looking like you were doing well, they are shocked to hear that you aren't doing well again. Which is another thing I don't think people really understand about chronic illness ~ that you can have random "good" days, but you aren't "well" or "healed" and you will go back to your "normal" bad days again... That this is the nature of most chronic illnesses. Most people don't seem to understand this at all. They think I'm crazy. :)

music4melinda said...

Thank you for finding the words and spending that priceless energy on sharing it with us, so that we can share it with others. You have made a difference in my day by expressing something which I have struggled and failed to explain to myself and those who question why I'm unable to do so many things that many, including myself, take for granted. I will pass this on. Thank you, again. <3

Rachel Lundy said...

Thank you for your kind words, Melinda. I'm glad that the post was beneficial for you!

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