Things I’ve Learned Since Becoming a Spoonie

Five years ago I started my journey of becoming a spoonie. In those five years I have learned many important life lessons. And along that journey I’ve learned many hard lessons, lessons that had I not gotten sick I might have never learned!  So I wanted to share just a few of the most important with you. Many of the things I’ve learned I’m sure many of you can relate to! So let’s just jump on in. 

1.  NO ONE will ever understand the fatigue or pain level unless they too are a spoonie. I don’t know how many times I have heard “Just drink an energy drink!” Really….. that won’t help. Or “Just take some ibuprofen and get over it!”  Yup! For the most part ibuprofen won’t help at all. If you don’t live it everyday there is no way that you can ever turkey understand.  

2. You learn really quick who your TRUE friends are! Sadly, after getting sick I figured out that not everyone I considered true friends actually were.  I have lost several friends because I am a spoonie. They get tired of my cancelling plans and not having the energy to get out and do things!! So they moved on and left me behind. Not everyone is like this and I did keep some old friends. But it seems like most turn their back and don’t want to deal!

3. I have learned to STAND UP for myself! Once I was diagnosed with Lupus I learned very quickly that if I didn’t stand up and advocate for myself that no one else is going to do it for me!  I learned to be forceful in asking for the things I felt were necessary and important. I have leaned that I have to stand up for my body and what’s important to me. In medical situations and personal situations, I have to stand up for me if I’m going to get what I need or want. Or what I feel is important. 

4. I learned how important it is to appreciate the small things.  I now understand how important it is to appreciate the small things. Things like having the energy to shower, do my hair and makeup all in one sitting. Or being able to work both days a week that I’m supposed to. Or having a streak of several days without a headache. Or being able to go to dinner AND a movie.  To non-spoonies those are things that they can do routinely and don’t understand how big those things are for me. 

4. I’ve learned how important it is for me to be honest with those close to me. I learned the hard way that I have to be honest about how I’m feeling.  Rather than making an excuse to not do something, I need to tell them I can’t because I don’t feel well. I learned to be honest with my symptoms and that it’s okay to be honest about them.  Those closest to me will understand and not make me feel bad about sharing them. 

5. I have learned just how important family is and how to appreciate them. I have spent countless hours in the ER, days in the hospital locally, and a week at Mayo Clinic. And my family is always by my side. My mom has set with me for most of those hours in The ER and took a week off to take me to Mayo. And my grandma has spent countless hours sitting in an uncomfortable chair at my bedside during hospital stays so I wouldn’t be alone all day. Without the love and support of my family I couldn’t have gotten through the last 5 years. 

6. I learned how to accept myself!!!  This may be one of the most important lessons I have learned.  I have learned that people are going to stare. They are going to think I’m just a typical obese women. They don’t understand that my weight is from long term use of steroids. They won’t understand why such a young women limps or has a handicap sticker. They may assume I’m just plain lazy. But that’s okay!!! I know the truth. I’ve learned to keep my head up and ignore the looks. It’s important for me just to be me!!! 

7. I’ve learned in many situations you just have to smile and laugh or you’ll cry.  I would much rather laugh things off and smile than cry. The conditions I have are bad enough without spending my days crying. Most of the time there is nothing that can be done to improve the situation so I have to just laugh. Not saying I don’t have days where I cry. But I have found the real importance of laughter. 

8. I have learned that it’s okay to have a bad day.  When you are living with chronic illness there are just going to be bad days. And there is nothing we can do to change that. But it’s okay to give into those bad days occasionally.  You just have to remember that the bad comes with the good. And because you feel bad today doesn’t mean you will feel bad tomorrow. 

9. I have learned that not all medical professionals are going to treat you kindly and some may look at you as a drug seeker.  This one has been hard to learn and I’m still working on accepting it. Being a nurse myself it’s hard when people just assume I’m a drug seeker if I seek medical treatment for my pain. They think I just want the drugs. When the truth is I just want something to take away the pain.  I’m not asking for high powered meds. I’ll take anything if it will get rid of the excruciating headache or pain I am having. 

10. I’ve learned that many of my friends will be people I may never meet.  I have met so many awesome and supportive people in support groups online. People I would consider some of my closest friends. Sadly, these people live all over the country or even world and I many never meet them. I know many people think this sounds crazy. But these are the people who also deal with the same problems I do. They understand the daily struggle because they experience it too. We understand each other in ways that most non-spoonies ever will. 

Living with a chronic illness (or more than one) changes a person.  It changes the way you feel about things, and how you look at things. It also shapes you as a person. It shapes you into a more understanding and caring person I feel. Because you have more compassion for what others are feeling.  Having a chronic illness is something I would never wish on my worst enemy but it happens. However, through the journey you will find the true meaning of life and learn many important lessons along the way!! 

I bet that a lot of you can relate to this list of things I have learned. I would love to hear from you and hear the most important,  or hardest lesson you have learned since becoming a spoonie. So please let me know in the comments or on one of my social media accounts. 

-Amber

  

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