Living with a chronic illness is like trying to predict the weather. We have no control over how we will feel moment to moment. There is a lot of speculation regarding the validity of the fast change in our health. I don’t know how many times I have heard someone say, “Well you were fine just a minute ago.”
The reality of living with these illnesses is that in the blink of an eye your day can change. You can be feeling awesome (for you) and the next moment, you can’t get up. You have no control over you, but you do have control of your spoons.
Yes, Spoons! I have spoken of them before, but allow me to refresh your memory! Persons living with chronic illnesses have become accustomed to explaining how we are feeling, what we are capable of doing, and how much energy we have using spoons. We compare our illnesses to having spoons. Just as we don’t know what the illness will throw at us each day, we don’t know how many spoons we will have each day. Some days we awake with 12 spoons, while other days we awake with 5.
It is our job daily to assess the number of spoons we have and choose how we will use them. Expending energy depletes spoons. Whether it is something as simple as taking a shower or getting dressed, we still loose spoons for those activities.
It is imperative for our loved ones and friends to understand the use of spoons in explaining our lives because when the shift happens and we go from feeling well to feeling poorly, the way we use our spoons has to change.
What do I mean? If I start my day with 12 spoons knowing that I have to go to a dinner party tonight, I will expend my spoons carefully, allowing enough spoons to attend the party. When our health changes in a blink of an eye, we have to reevaluate how we will use our remaining spoons because flaring itself takes away quite a few, if not all the spoons we have. That dinner party may not be in our reach anymore. Our plans have to quickly change to adjust to our current condition.
We may have had every intention on going, but the illness changed the plans. We aren’t picking and choosing what we WANT to do. We have to count our spoons to see what we are capable of doing. We are not using our illness to get out of things nor are we sick only when it’s convenient for us. Yes, I have heard that line as well. Let me be clear; there is NEVER a convenient time to be sick. We don’t ever want to be sick. Do you?
I am here to tell you, I understand that your illness is unpredictable. I understand that you have to change your plans according to how you are feeling. I know you aren’t faking to get out of going and doing things. I know it hurts to hear people say things of that nature to you. I understand you can’t control the forecast of your life.
I do encourage you to maintain your spoons. Be smart with your usage. Allow yourself a few spoons hidden in your reserve in case your forecast changes. Don’t allow other’s perspective to deter you from using your spoons wisely. You may not be able to control other’s opinions and I know it’s frustrating that they don’t understand, but stay focused on your spoons and live your best life with the spoons you have!
Others may not understand, but I do and I am here rooting for you and supporting you all the way through this journey!!! We fight and win together!!!!
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