What do you do when disease changes things? Life changes.  Family changes. Friends change. Relationships change. Strangers or acquaintances become “the experts”. Doctor changes, especially when medicine is involved. People lie. People have suddenly become experts and have strong opinions about how I should do things and give up. These are a few of my favorite things, NOT. As a person with a debilitating disease, MS has changed my life. More now than ever, especially in the last 8 years. I have become creative, moody, skeptical, wary, stressed, shocked, experienced extreme ableism, constantly defending myself, explaining repeating, and very unsure. I have been through a lot, and I am certain I am not alone. I read somewhere and someone very bluntly told me, everyone has their own story to tell. How it was said to me felt like an insult. It was said during a time of struggle. I was taken back by the comment and immediately felt guilty and was complaining. I am a pretty strong person; I do not give up easily. When set back with life and people punches, I try to recover from the situation and repair my thoughts and emotions to the best to my ability. I am beginning to realize that I can be patient, kind, forgiving, nice, accommodating, educating, but human nature is not always that way and most often very hurtful and selfish. It is a 50/50 balance.

I had some life changes recently. I turned 60 this past year and I really struggled to find peace within me that I am a person with a dual disability. It has tipped the scales some. Life as an abled bodied person does not seem feasible right now, there are more life challenges. Adapting to other people’s moods and inconsideration is an extra thing now. Please do not misunderstand me, I am grateful for ALL of you that have helped me with things, you know who you are. I am in a new place now; I have moved again and relocated to the South. Was it a good decision? The grass always seems greener in my head, but there are some brown spots. Living with family and other people is nice for my mental health, but it is hard. It is more challenging and stressful for me when there are other people involved. And it is more difficult for me because I constantly feel I am a burden. Living alone has its perks and struggles. Is that an everyday feeling? I think it’s a 50/50 give or take. I can see other people’s emotions in their faces and body language, and it is uncomfortable. I retreat within myself, so I can try to remain stress free and calm. Stress and disruptive environments are not good for my wellbeing, Living alone was a different kind of stress. Maintaining independence was and has always been my number one priority. Staying strong and healthy is also my number one priority. I sound selfish. Why do I feel that way?

 I have other people in my environment now and I feel burdened to make sure they are ok, not uncomfortable, not tired of doing a few things for me without an opinion, constantly reassuring myself when asking for help it is ok regardless of what they think. I did not have this living alone. My constant was always trying to find help with things and asking for it, holding my breath just in case I will be told no. I look back on some things. I have had some amazing people in my life. There is one person in particular who has been my solid rock with nothing expected from me, I will eternally be grateful, a god given angel. Others have helped me with things desperately needed. The things were relocating me from a hostile environment to a better place, gave me money for things I desperately needed, shopped for groceries, helped with personal things like laundry cleaning, lending a shoulder during rough times. With that came some downfalls like people not coming through with promises. It is a 50/50 take. Now today, another 50/50 situation, but with people involved. The struggle for balance intensifies. My wellbeing is somewhat compromised.

I need to have faith and believe that everything will work out. It does not feel like it right now, but I have been told, trust it. Doubt is a huge negative force to overcome. Trust. Is faith and trust a 50/50 balance?