I have lived with my Multiple Sclerosis diagnosis since 2010 and I still haven’t found the right words to explain what it’s like to others. I found the post below and was in tears while reading it. It says everything I’ve always wanted to say and couldn’t. I thank Penelope for giving me permission to share this and for somehow finding a way into my mind and heart and expressing my feelings so eloquently. Keep up the good fight, Penelope!
To whom it may concern: an open letter about life with Multiple Sclerosis
To whom it may concern:
There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will help open your eyes and heart to what life is really like…
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I was so surprised to see you at the store the other day! When I said you looked so good, you starting crying. I didn’t know. I’m sorry. I remember when you got sick so many years ago, after all this time I just assumed you were better. I didn’t know. I remember that we used to talk on the phone a lot and when we would bump into each other at the grocery store we would stop and gab for a few minutes, and I remember those baseball games when the kids were little, it was always so hot! I thought our lives had just changed because the kids grew up, I didn’t know what you were still going through. Like the old saying…”out of sight, out of mind”, I guess. Hadn’t seen you at church for a long time, but you told me it is hard to get ready and get there. I didn’t know. You told me you seldom drive or go anywhere. You told me that both boys moved all the way to Denver, I didn’t know that. I didn’t know you had to quit your job and you haven’t worked since 2001. I didn’t realize you have been ill since 2001, how could that be? After siting with you for a while I learned about your illness. I didn’t know there was no cure. I didn’t know how your illness has totally changed your life. I didn’t know your husband works three jobs, I guess that’s why I never see him! I didn’t know that most of your friends have stopped calling you, just like I did. I admit that I stopped inviting you to things at my house because you often declined or cancelled last minute. I didn’t know you were that sick. You look so good, like nothing in the world could be wrong. I will never say that again to you. Instead I will ask you if there is anything I can do for you. A ride to the doctor? Pick up your prescription? Take the dog to the groomer or for a walk? Come over and watch TV and help you with your laundry? I am so so sorry, I just didn’t know.
My stupid body has decided on a “new normal” and I am not happy about it. I have not changed my dosing of my steroids (7am – 10 mgs HC, 11am – 5mgs HC, 2pm – 5mgs HC), but my days are becoming more difficult. I wake up exhausted, even after sleeping all night. I am napping every afternoon, or at least resting because I am so tired. I don’t have the energy to take a shower or get dressed until late afternoon most days. My evenings are better, seeming to have more energy and able to get something accomplished. BUT, I still have at least one or two days a week that I am totally unable to do anything, and the day is spent in p.j.’s on the couch. I have no idea why my body has decided to throw this new daily routine at me…………..I certainly have been worse………but I have definitely have been better. The only explanation I can come up with is the change in weather……is that possible??
My bowels have been giving me the same problems as always, seeming to decide on a whim if they want want to trap me in the bathroom for hours, or not work at all.
I have decided to try and wean myself off my sleeping meds, I hate the nightmares and drugged feeling I get when taking Lunesta. It doesn’t always work for me either, laying in bed staring at the ceiling for hours is so frustrating!
Getting off the seizure medication was the best decision I ever made. It made me spacey, drowsy, confused, dizzy and just so out of sorts! Ten years on that medication is ten years wasted as far as I am concerned.
My cat is laying on the bed next to me showing me his belly…..must go and “rub da belly” now.
If we had blinked our eyes, we would have missed it.
For three days we watched every breath she took.
For three days her laboured breathing kept us awake at night.
One night we all slept there. Me in the recliner right next to her, Karen on the sofa bed, Joe on the couch, Billy on the floor. When the sun rose, Karen and I changed places.
When Ma finally woke that morning we knew there was something different. Her breathing was different. Her gaze was different. Her pain gone. She was no longer restless. She slept peacefully. She was there…but she wasn’t. She was just waiting.
That evening her breathing had slowed and become quiet. Finally, She calmly took her last breaths. It was as if a window opened and she left on the breeze. She looked like a sleeping child in her bed. Curled up on her side holding her rosary and her beloved medal. If we had blinked our eyes, we would have missed it.
It was heartbreaking to see her Grandson check for her pulse.
It was heartbreaking to see her Son-In-Law check again.
It was heartbreaking when Her other Grandson rushed in…..afraid of what he would find.
It was heartbreaking to look in my Sister’s eyes and know that it was over. What we waited for…peace for Ma. It was over. I wished for celestial music or fireworks some proof that she was okay. We all sat with Her for a long while, it seemed. But it wasn’t long enough. But she had “gone to the place that’s the best”…. and the happiest biggest family reunion ever. And yes, she let us know she made it.
Christine Miserando writes a blog named “But you Don’t Look Sick” where she covers topics that are interesting to people with chronic illness. The title of her blog is a statement that anyone sick hates to hear, there is no way to respond without sounding ungrateful or bitchy. There is no good response. Christine wrote a wonderful article she calls “The Spoon Theory” explaining how she described her health difficulties to a friend. Her article has helped countless people understand what chronic illness, especially profound fatigue, can do to someone. I have quoted her theory often and my family ask me about my “spoons” all the time. It makes sense. Please read her article. (The Spoon Theory)
My fascination with spoons turned me to the internet looking for anything “spoony” to acknowledge my fondness for the simple spoon. I discovered shirts, necklaces, magnets, wooden, metal, baby, gigantic, teeny and personalized. But, my favorite find was a site owned by LeAnn Larson of Minnesota named, Bent spoon Jewelry I fell in love with her beautiful jewelry and bought one pronto. She fashions pieces out of old silverware and I was thrilled when I found a bracelet made using my Mom’s old silver pattern. I wear it everyday, it is meaningful for me because it reminds me of my Mom.
Sharing this talented Gal’s website is something I just wanted to do, I don’t know LeAnn personally and I don’t work for her. Check her out if you are looking for ake a something unique. Because, we can all use an extra couple of spoons occasionally.