Having MS and Parkinson’s is very hard to explain to healthy people when you “look good”. Most people think that either you really don’t have these illnesses that you say you do, or you have it very mild, whatever the invisible illness is. When and if I go out, I rarely leave my apartment without makeup, my hair looking good and dressed neatly with nice clothes. Even when I just go over to see my grandson. It makes me feel better to look at myself in the mirror before I leave my apartment with a stamp of my own approval. I think that I’m like that for two reasons. I feel better when I’m put together and it makes me feel stronger than the illnesses that are ravaging my body. I watched my Dad put himself in a wheelchair not long after he was diagnosed with Parkinson’s .He gave into his illness and became a sick person. It wasn’t fun watching him wither away from my tall handsome strong dad to an old man who never tried to fight this horrific dis-ease. That was my dad in his 20’s. Love this picture! ❤️❤️❤️❤️. I made a promise to my three beautiful children that I will do anyway not to give in to these illnesses. I work on being a healthy person that has two chronic illnesses rather than a sick person with them!
Here I am on the left with my two good friends that I met to have lunch with this past Monday. If you were walking down the street and saw us, you probably wouldn’t think that all three of us have a chronic illness. That’s why invisible chronic diseases are hard to explain to healthy people. Our outside body looks well, but inside we are ill. All three of us have Parkinson’s and each of us have totally different symptoms. PD is a movement disorder that affects each person differently. We each take our own prescribed medications for the symptoms that we are trying to manage.
Remember, chronic means there is no cure. So, depending on your symptoms, you manage the illness with drugs, supplements, exercise, and any other alternative therapies that will comfort and ease your suffering. I’ll talk about those in another blog.
Lately, my symptoms seem to get worse later in the day, so when my friends see me, they are seeing the stronger Barbie. When my meds wear off sometimes too soon, they see some suffering. I am much slower walking and very stiff. Some friends want to help me which is very kind, but when I get into the car or in my apartment, I sob. I cry because I’m not the old Barbie that was athletic and strong and fun! I get frustrated, embarrassed, anxious, and ashamed. I become isolated sometimes because I feel like a burden to my friends and family. I’ve lost a lot of friends and it hurts. I’m not as social as I use to be because I can’t do the things I use to to: dance, play tennis, golf, balance poses in yoga, and walk as far as I use to. It’s very hard to go to parties because I get so rigid to the point where I have to leave early. I use to be the last one to leave a dance club. It makes me so sad.
Then, there are other times when I feel great and I can do or attempt to do those activities. It’s crazy not to be in control of your body’s movements. When I’m feeling good, nothing stops me! I even danced at my niece’s wedding for four straight hours with 3 inch heels! Yay! The old Barbie comes out once in a while. Parkinson’s is a very unpredictable illness. This is my niece Jessica. She was the beautiful bride. I rise to the occasion when I can connect my mind to my body in a positive way. Nobody could believe that I had any dis-eases! And when I babysit or just see my grandson, Shay, I seem to forget about them too!When I see him, his smile just brightens up my entire being. No MS or PD then! I can’t get enough of him. Sometimes I tell my daughter, Marni that I need a dose of Shay. He is my medicine!
So now I’ll finish my blog on Having Invisible Illnesses. It’s made me more aware that we don’t know who is suffering on the inside when people “look good” on the outside. You never know what’s going on inside. I’ve learned to be less judgmental of myself and others. I’ve also have learned that when you have no control of what you get in life, fear can take a hold of you in a way that changes your life. I have to learn to accept these illnesses, love myself and not to be so hard on myself. After all, when I leave my apartment, I look in the mirror and see what everyone else sees that day! I “look good”! I may not feel great, but I have the Invisible Illnesses! Only I know!
When you’re a grandma, life changes in many ways. At least it did for me! All my friends told me about the joy a grandchild brings, and they were right! Even in my darkest moments, I look at Shay’s(my grandson) picture and a smile comes to my face. I have more energy, more hope, and more love! Unconditional love from this little bundle of joy! And I know he knows my voice! When I am with him, he calms me and I calm him. I can’t stop looking at this miracle of life!He brightens my life!
Why am I talking about him right now? Because I am babysitting for the first time! Alone with my grandson for the first time! Parkinson’s and MS and all! Doesn’t stop Gamzy! (That’s my name for grandma). I love to sing to him and tell him how much I love him! And you know what is the best? My daughter Marni and son-in-law Shawn totally trust me alone with him. Even with my neurological challenges! They know if I didn’t feel comfortable doing it, I would say so! But I do! Shay gives me strength! I feel his positive energy which brings joy to my heart! He knows he can count on Gamzy’s love!
To me, he is perfect! I know every grandma says this, but he is really perfect! From his cute little toes to his precious little hands to his adorable little face!
So, I am in love with this new little man! The loneliness I feel is finally starting to fade away. Shay is a miracle.
Having MS and Parkinson’s when you live alone can be very challenging. The past 6 months, this has been my life. I’m not use to being alone(without a man), and it poses a lot of upsets for me. I love to love and I love to be loved. It makes me feel safe, so me, without a significant other gets my mind thinking crazy thoughts. Some of the thoughts are, “what is wrong with me?”, “I’m not pretty enough.”, Why do I screw up so much?, or the biggy is “Nobody wants to be with me because of my dis-eases!”
Hugging is essential to my well-being. It contributes to my health, my self esteem, and my anxiety. I’m not getting many hugs these days so I go back to the negative thoughts. That doesn’t contribute to my well-being! So, you can imagine how I feel when I am alone. Anxiety creeps in and tears flow. I think because I’ve always been in relationships, I’ve neglected myself to the point of dependency. Not a good thing! And, Saturday nights when I’m alone is very hard for me. Thank god I have my daughter! I’m not saying my sons aren’t there for me, but my go to person is my daughter, Marni! I adore her husband Shawn, so he has to put up with me too!
They are the best! I’m always welcome in their home and now that she’s pregnant, I will be there even more! I can’t wait for my first grandchild! That does put a smile on my face!
Anyway, getting back to my crazy thoughts. How do I not believe that they are true. I’m always fearful of the future and I always look at my past saying, “if only I had said this or if only I did this, things would be better.” I’m learning through a lot of reading, research, therapy, and my Parkinson’s Recovery coach about “mindfulness.”
Mindfulness as John Kavat-Zinn puts it, “mindfulness is awareness, cultivated by paying attention in a sustained and particular way: on purpose, in the present moment, and non-judgmentally. It is one of the many forms of meditation….” “ Ultimately, I see mindfulness as a love affair—with life, with reality and imagination, with the beauty of your own being, with your heart and body and mind, and with the world.”
So, in essence, through daily meditation practice, we can live in the moment, not the past or the future. It’s a learning practice for me, but when I meditate it calms down my mind and lessens my anxiety. That is very good for healing, my general well-being, and brings me a sense of peace and happiness. The most important thing meditation does for me is tapping into my inner self. That helps and empowers me when I am alone.