Before I founded MyCounterpane.com, I was a producer who made testimonial videos. This means I never wrote a script; I just opened the door for people to tell and show me their story.
Now, I want to create an honest video about what MS brings to each and every one of us living with MS.
√ MS brings moments of struggle as we try and treat the illness itself. The side effects of medication, arduous physical therapy, the foot drop, the hospital visits…. People need to see this is part of MS.
√ MS can also bring new accessories. The wheelchair ramp, the bed lift, the voice-activated trying software…. People need to see this is part of MS.
√ MS also brings more abstract repercussions. New friends, fundraising gatherings, wise thoughts, realizations of what’s important….. Again, this is part of MS and people need to know.
Please share something that is part of your life with MS in a video or in a photo upload and description. Your submissions will be added to a piece that will show the outside world what MS really brings into our lives.
Update: Your responses
I tried to upload a picture of me getting an infusion and left a few words about how this day of rrms has me afraid and my family afraid.
MS has bought me an appreciation for the small things in life. It has taught me that I don’t need to sweat the small stuff, and that don’t need to control everything… It has taught me that I have an amazing family…
MS has brought all sorts of changes in my life; wanted or unwanted. I have had to learn ‘how’ to change with each change. I used to live in a nursing home, then they informed me that I was too healthy to live there any longer so I had to find another place to reside. Luckily, my sister and I went ‘shopping’ through the local assisted living complexes. Fortunately, we found one that fit me in the best possible way. Live there for 2 years. I played the piano every Wed. for all the residents while they sang. It was a blessing for them as well as me. Music was and is one of my most fortunate avenues for living and enduring MS. It frees the spirit no matter how unfortunate or unhappy the situation.
In the nursing home, I met my future husband. UNFORTUNATE, I realize but it IS true. We were married at the assisted living complex before I left there. What a wedding! We will have been married for 3 years later this year.
Life IS full of wonders. We bought our daughter from a pet rescue after we were married. She is our joy, let me tell you! The companionship is great. She helps us realize the many challenges or difficulties a person can have if they do NOT accept the ‘rules’ of the household. Many times we who have MS don’t ‘obey’ what has been told us by professionals only to find out later that we ARE really in trouble. ‘We were just trying to help’ we might say.
I am the chairperson of the local MS Self help group that I started. We are starting to really make a difference in our community. Correspondence is one of the important roles in this case. Many people with this complication do not feel comfortable getting out and letting others ‘see’ how they might have been affected if at all.
We need to spread the word about this disease; what it is ; what it might do; what type of MS we have . . . The general public knows so little about it. We are the ones who help inform them.
Thank you, Kate, for this lovely testament to such a horrible disease. I shared this information on my blog and plan to encourage my followers to visit MyCounterpane.com.