Me and my Spoonie story

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I tell my story to whoever wants to listen. I am glad to tell to whoever that wants inspiration, advice or just a ear to hear. 

 

First, let me say that it is not easy living with a chronic disease. But when you have three caused by your autoimmune system screwing up, that is trouble times four. Then your insurance (bless their heart) tells you that you can only get six prescriptions per month, two name brand and four generic, hoping one of your name brand medicines will be covered on the first of the month. I have type 1 diabetes. I've had it since 2008. Then I got rheumatoid arthritis, I had it since 2014. Then, because of my type 1 diabetes, I developed neuropathy on my feet. Now since my screwed surgery on my right knee in 1980 I have developed osteoarthritis. I have twenty different medications that I take! Some of them are cheap generics, but two (my Novolog and Enbrel) are quite expensive. I have access to pump supplies (that costs nothing but a copay), free test strips and lancets, pay copays on my meds and doctor visits, and a wealth of information on my conditions on the internet. I also volunteer for JDRF and the Arthritis Foundation. But I have learned many things about living with chronic illnesses. But there are three lessons that I have learned being a spoonie since 2008.

One: never do anything hard. Ask for help if needed. I have five children, all grown. They always asked if I needed help with something that I'm trying to accomplish, especially since after my rehab days after my spinal cyst surgery (which indirectly gave a type 1 diabetes diagnosis) I would need help with dinner or something hard. They are more than willing to help, but sometimes they say, "Can't you do it yourself???". Even my dear husband Greg gives his two cents worth, " Your mother is tired!". 

Two: always trust in God. I have been a Christian since 1978 and became a Catholic twenty years after that. I believe in prayer. I do not believe that prayer alone can heal. I believe God sent doctors, medicine and different kinds of activities (and the Sacrament of the Sick) to help in the process. It is not selfish to ask God to give you the strength to go through your illness. But it is selfish to trust him completely to heal you. That is called "presuming on God's will" and it can be dangerous not only to your body but to your soul. If you are not a Catholic you can use your own faith tradition concerning prayer.

Three: pace yourself! Use your spoons wisely! I have allowed myself twenty spoons to spend my energy (5 each for my four chronic illnesses) and use them wisely. One of the Girl Scout Laws is "to use resources wisely". I hold it in high esteem to count how many spoons I use for my activities. For example: I use one spoon each to get up, pray my rosary, eat, or get dressed. For two spoons I use for minding my meds, tweet/Facebook/Pinterest, or blog. Three spoons are for feeding the animals, going to church and cooking. Four is for my home business, shopping, going to fundraising events. Five is for the really hard things that take my energy, such as sewing or working on my awareness angels jewelry. Sometimes I have a lot, sometimes I run short of energy.

I hope you Spoonies can be inspired by the lessons that I used and am still using, because my illnesses are lifelong, like many of you. I hope for many spoons for each of you, and I'll keep y'all in my prayers.