When we have chronic illness, our minds are quickly programmed to think about all the things we can no longer do.
Doctors, allied health professionals, family and friends, can easily feed us messages which concur with our “I can’t do it” mindset.
Don’t get me wrong, there is lots we can’t do when living with a chronic disease. My list sometimes seems endless and can cause me to feel as if my disease is in total control.
Is it though? Or am I at risk of allowing it to take over more than it should?
I ask myself this question constantly.
I don’t want to be a prisoner to my disease. I want to scale whatever heights I can safely push, and ultimately I’m the only one who can decide my limits.
You Sound So Well
I answered the phone the other day in my normal cheery phone voice. To the caller I sounded well and upbeat.
Seeing me in person told a very different story.
I was in agony and so exhausted as I had been out early for fasting blood tests. The effort needed to get me out early is nothing short of a Gold medal, Olympic marathon performance. It pushes all my boundaries.
Anyone who knows me well, knows I will always present a “professional” image on the phone, no matter the circumstances I find myself in.
I’ve been trained to do this in my corporate and church life. I also always try to dress nicely, at least in a smart casual sense, every day so I’m often told I look really well.
It just wouldn’t be me not to do so.
Chronic Illness was never going to change my love of fashion, makeup and making the best of what I have.
Should I sound “sick” on the phone? Should I dress as if I had just got out of bed or don’t care about my appearance? I have severe pain and fatigue and sometimes I do lose my voice as a result, but generally I can talk. I often look drained throughout the day but if I’m seeing someone a lot of planning has happened prior to seeing them to ensure my pain meds are at their maximum effectiveness. Why would I want to sound terrible or look dishevelled if I’m able to do otherwise?
I know, as my disease progresses, the day will come when I will be in a state of disrepair and unable to do much about it. I’m going to try and “live well” now and for as long as possible.
The caller the other day was someone I know and love. They were relieved I “sounded” well, so their comment of “You sound so good”, came from a place of love and concern in regards to me being chronically ill.
It still caused an emotional reaction in me and I heard myself respond, “Thankfully it’s not my voice with the problem”.
So why did I respond this way?
I felt like I wasn’t allowed to sound ok. I felt like I was supposed to portray some kind of “sick” or “pained” sound in order for the other person to understand my pain.
Now this is clearly my issue, not the callers. I should, and can, allow myself to feel free, to sound bright and upbeat. I don’t want to sound miserable because I’m not.
What I can do is use these opportunities, with grace, to educate people as to what it’s like to live with chronic illness.
My husband on this occasion did it for me. As he spoke to the caller he said, “Sam has a professional phone voice no matter what, but it unfortunately doesn’t mean she’s ok”. Bless him!!
How Can You Do That?
Do you find yourself saying, “I can’t do this or that”.
You’re probably right but have you looked at the situation before you and asked a different question?
Have you asked, “How can I do this?”
I drive my husband mad, as I’m constantly looking at things around the home and trying to find ways to clean.
His love and concern about my health, wants him to wrap me up in cotton wool. Even one of my Orthopaedic Surgeons has said in the past, he would sleep better at night if I was wearing a cotton wool suit.
While I do have to be extremely careful, I have learned how to move and support my body in a safe way. I can feel if I am doing something to aggravate my disease.
I also know some things I do will increase pain but not cause damage. There is a difference and it’s not an easy one for an onlooker to identify. Only I know the difference.
Pain is a constant for me. If I didn’t do anything because of pain, I literally wouldn’t even attempt to get out of bed.
So my question, “How can I do this?”, is a very valid and appropriate one.
It causes me to pause, think and plan my approach, before I attempt to execute an eventual well thought out strategy.
Once the strategy is formed, I’m safe to try. If I feel I’m pushing too hard or too far, it’s ok to retreat. At least I gave it a go.
The Moral Of The Story
I recently did something most people would think I was incapable of doing with my disease.
I cleaned some windows!
I had my well thought out plan. I had all my tools at hand and I very carefully went about undertaking the task.
I also made sure my husband was at the shops, so I didn’t have to hear him painfully groaning at me and giving me messages of “you can’t do that”!
The worst thing that happened was I banged my head but I was ok.
Was I sore? Yes.
Was I pleased with myself? Yes.
I could see out my lounge windows into our garden and see the flowering Allamanda, Daffodils, Begonias, Petunias, Roses, Crepe Myrtle and Bougainvillea in full bloom, through crystal clear glass.
Of course, we had a series of thunderstorms in the following days, so the crystal clear view wasn’t going to last, but it did for a little while and I enjoyed it every day.
My husband came home to a very excited wife and thankfully he was both proud and pleased at my determination, with a little concern mixed in….but we’ll just call this “love” for now.
So, back to the moral of my story. We can so often give ourselves the message, “I can’t do this”, because others have told us we can’t.
Or perhaps we are afraid people won’t believe how sick we are, or how much pain we are in, if they see us trying to do things.
I think this is perhaps the sadddest reason for us not to ask the question, “How can I do this?”
If we allow others preconceived ideas of chronic illness, to stop us from attempting to do things we feel we are capable of doing, (despite the painful consequences), we are allowing them to take life away from us.
We have a right to live, a right to test our limits, to achieve, to sound bright and bubbly if we can.
We have a right to choose to take off the cotton wool suit from time to time and test the waters.
Yes we need to be careful, we need to follow our medical teams advice and listen to our loved ones concerns.
However, we don’t need to constantly tell ourselves, “I can’t do this”.
It’s ok to ask ourselves, “How can I do this?”
Enjoy testing the waters carefully to see what you can do.
Remember it’s ok to sound good and look well despite having a Chronic Illness. It takes so much from us so don’t allow others preconceived ideas to influence your life choices.
Enjoy doing what you can do, while you can do it.
Rise up; this matter is in your hands. We will support you, so take courage and do it.”Ezra 19 v 4
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!