"How things are going" these days

Living with Multiple Sclerosis continues to be a challenge. I guess that is an understatement. Truthfully the last few months have been

exhausting physically and mentally. I know many others who suffer from chronic illness and I know it is hard for anyone to understand the depths of their suffering. I continue to write this blog because I hope sharing my story even if it means sharing my suffering will inform or inspire someone else. So today I feel like writing an honest assessment of “how things are going”.

If you have followed my blog you obviously know I believe in natural health. I continue to have success controlling any cancer that may be lurking in my body but have not had success halting or improving MS. I am struggling right now to adapt to a second medicine for MS called Rebif. It just makes me tired and feel blah most of the time. I have to inject it under the skin 3 times a week. Taking Advil or Aleve before the injection helps a lot and I do think it is slowly getting better but I still don’t feel like myself. The question is will it slow things down. No one really knows. I am going to have to determine in a month or 2 if the possible benefits outweigh the side effects.

Sometimes it feels like I am being torn between 2 worlds but I am doing my best to navigate through both. In the world of natural health I have consulted with a very wise chiropractor/wellness guru who informs me I still have an issue with yeast. I am recommitting myself to getting rid of it which means the addition of a new supplement and a mostly Paleo diet. Sometimes it takes someone else to remind you to have patience. I was targeting yeast through supplements and diet for over a year but have slowly reduced/changed things some. I am well aware that most people would give up after a few weeks or months of not seeing improvement but I don’t feel like I am on the journey most people are on. I am not ready to give myself up to MS. If I have a chance to impact the course of this disease then it is worth the effort.

As for now I am doing the best I can. Every day can be different but since starting medication my energy levels are pretty limited. I just try to do a little, rest, and do a little more. The weakness in my left leg continues to be a challenge. I do a lot of stretching because the muscles in my upper legs and hips are very tight and sometimes achy. Walking anywhere at length tires out my left leg and makes it hard to walk. Other symptoms that come and go are brain fog, tingling in my feet and left arm, minor muscle spasms, sensitivity to heat and cold, and hot flashes. On a good day I may only have leg weakness and minor brain fog. On a bad day they can all flair up, sometimes at the same time. I am using my handicapped parking tag more often when I need it and I have used the scooter once at Costco but for the most part I still power through my errands or let Rich do them. I still need to learn things can wait sometimes. Powering through can leave me exhausted on a bad day. I just don’t like not getting things done which is why I am very grateful for the good days when they come.

The hardest part for me is feeling disabled. I know I need assistance more than I want to admit. Facing my world in a wheelchair frightens me. Truthfully it is silly but it is not about using the wheelchair, it is facing the questions and judgment. Tonight is open house at school. Will I be able to walk to classes or should I take the wheelchair? I should take the chair but the thought of it just makes me want to cry. If that is how I feel it makes me realize how every person with any type of disability must feel when people look at them differently.

And so the lesson for the day is about judging others. Living with chronic illness has made me much more aware of other people. Sometimes it is easy to assume someone is just overweight or lazy. The truth is we do not know what someone else is dealing with. Chronic disease can often be invisible. Mental illness can be invisible. Judging someone else without knowing their story is unfair but we all do it. Be grateful for what you have and be happy for your achievements but be mindful not everyone is capable of the same triumphs and that is OK.