By Sue Jackson
I have shared other's stories before, but this post by Sue Jackson, resonated with me this week. The above is the link to Sue Jackson's post that I needed this week. A reminder that I am not crazy and there are kindred CFS'ers out there. I also hope it will be helpful for those that support me and try to understand this illness and my non traditional route of treatment to read someone else's story. To understand there is no magic bullet that I have chosen not to take. Yes, I have taken a road less traveled, but it is a well thought out road. I never judge how anyone chooses to handle or treat this illness, because there is no clear answer. And I believe since it is an immune disorder there is no "one" treatment model that fits all. Most of us were told by doctor after doctor that we were not sick but we knew we were. Most of us woke up every morning thinking something is wrong but I must be making this up. Most of us have been our own advocates, our own teachers, our own guinea pigs to figure out what will help.
My family was just visiting for ten days. And it was wonderful and exhausting and irritating and felt like a massive mirror in my face reminding me that I am not well. But what is hard to see is how much better I am. I am better but this illness is not measured in days or weeks or even months...and for all the improvements I have made there is nothing like watching others on vacation to feel a bit empty inside and once again trapped by this illness. It's a bit like that Sesame Street song, one of these things is not like the others...well I am the other...and I am tired of being the other.
The thing is for most of us CFS'ers our home is our escape. We don't have the luxury of jetting off for a vacation, or running to the mall or me out to dinner when we get overwhelmed....our home is our haven and our home sometimes feels like our house arrest. So when anyone is in your space, you don't have that outlet to escape to and that is what hit me so hard this time. Because I love people in my space, or at least the "well" me loves people in my space. Now it at times feels suffocating because I need to retreat to my bedroom and find the quiet to find my balance and it is not what I want to do, it is what I have to do and it breaks my heart.
Make no mistake. I am better and if these food allergies didn't keep me tethered down I would have much more freedom within the confines of this illness, but there is no room for "ifs" that only weighs you down. I am better and I am better at knowing my boundaries so that I can make the most of my days. I am better and I have adapted to this new life but I will never stop fighting for me to dictate my life again not this illness. I hear you loud and clear Sue.