The past couple of weeks I have come to the realization that MS is slowly (?) taking away the things in my life that I love.

I have accepted the fact that I can no longer fly my airplane whenever I want and am done grieving about that. What is, is. I can still fly but must have someone else (a flight instructor or another pilot) in the airplane with me, I just can’t fly solo any longer. I miss that, but I have accepted what I cannot change.

I am not one to complain about life’s little challenges, I tend to look for the positive and move on. That’s what I did when I was faced with this disease. I figured I would just make the best of it and keep going. I’ve made a career change, some major lifestyle changes, probably some personality changes , but over the past 6 months, I’ve been met with some challenges with my current job that I am not accepting very well. That’s the realization that I have come to these past few weeks.

I spent 2 years making a serious effort at going back to school and graduating with a Bachelor’s Degree in Horticulture, Magna Cum Laude, after I was dx’d with MS. I knew it was going to be tough but decided that I wanted to work in the landscape design field as I really love what I do. I have been very fortunate with the company that I have partnered with doing installations and we make a great team. We went to school together and work very well together.

What’s the problem you ask? The problem is fatigue, pain, MS. I work one day and stay in bed the next day. And by work, I mean sitting at the computer working on a design, traveling to a job site (residence) taking photographs, maybe doing some grocery shopping, interviewing a client, all in all, maybe spending 6 hours out or less. By the time I am done, I am so tired, I cannot function. It’s all I can do to get home, download the photographs, get some water, and flop into bed. The next day I am toast.

This has all happened in the last 2-3 months. I feel like my life as I once knew it quickly slipping away. I am not a quitter, I am a fighter. What am I going to do? I have no one to talk to but you, my online support group.

The rest of the story….I go in for the re-test for the clinical trial June 27th. It should take 2 weeks to find out if I am back in the clinical trial extension study on the real drug for the next year. I guess at that time, if I am in, I won’t have to make any decisions about future treatment. If I am out, I get retested in 90 days. Maybe it’s time I think about treatment. Back on something. That’s the ethical dilemma we “lab rats” face. Once I am out of the trial, all the data goes away.

Sorry this is so long, but I am just tired of feeling so crappy. I love what I do and maybe I need to find another way to do what I do…another way of landscape work/help/something. I just don’t know. I do know that trying to make a decision when I don’t feel well is a very bad idea.

What have you lost to MS?