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.
I made a few "fatal" flaws on Wednesday, the main one being I forgot that I am sick. I felt pretty decent on the way to the doctor, therefore I didn't have lunch, although I brought it with me. I had a blood treatment which I hadn't had in about 6 weeks after the marathon of vampirish like meetings with my doctor previously. And it all went, 1, 2, 3! Ahhh, I feel great! I even phoned my friend on my way home and said I feel so much better than before my treatment, don't worry about coming over after work. I still wasn't hungry, so I didn't stay and eat my lunch in the office....fatal flaw number one. I then decided it was of utmost importance to get a chocolate lava cake at the grocery store I pass on my way home...fatal flaw number 2. I then thought it would be brilliant to pick up my dog from the groomer before I went home and ate because I was passing it also on the way home...fatal flaw number 3. And that is where it all started going brutally down hill.
While waiting for Sophie, I started becoming light headed, so told them I would wait in the car because being the first 90 degree day in Phoenix it was warm at Applewood Pet Resort - yep not making that up...it's Scottsdale folks! So I got Sophie and started slamming a Coke and continued on the one main road that takes me home. Then everything started going from bad to worse..I could feel my body just saying enough...too many flaws and we are going down...first I called my mom so I could worry her to death, but needed to be on the phone to maintain some level of thought process. She insisted I pull over, but at this point I am on a busy road that curves with no side lane and less than 1/2 mile from home. I could see how this would go down if I pulled over...911 may I help you...yes I am about to pass out, in my car in a 90 degree day with my dog and god help me if you decide to take me to a hospital because you will mess the F up my treatment schedule. So I didn't stop, my adrenaline kicked in and I took deep breathes and focused on one thing and one thing only - get home. As I pulled into my complex, sped past both "guard" gates, tore into my shared driveway barely closed the door on the car and entered the house I grabbed the entire container of juice, too afraid to be on marble tile for a mili second longer than necessary and got onto the sofa. My mom called my doctor BFF and she moved her 4pm appointment and headed over to my place. It passed, it took close to 36 hours to feel like a human again but it passed.
And I was blessed to have a "team" in place for these unexpected but predictable moments of a body that abandons you. Kristine came over and made me bacon and eggs that I finally managed to eat. My Dr. BFF stayed and monitored me until she had to leave for her patient. And Christine 2 as I call her, instead of giving me a hydro came over and "chaperoned" me. She kept saying I feel like I am doing nothing, and I re-assured her that she was doing exactly what was needed. She asked me a question, "are you afraid now to go and get the treatment again?" and I almost was shocked, "No" I replied, just the opposite. And then I smiled to myself and realized how far I have come.
This episode in the past would have terrified me, but now I was terrified of what may have happened, i.e.: causing an accident or falling on marble tile...but I get it...this is part of the game. I made "fatal decisions" I acted like a healthy person, and the fact that I even did that...well that's improvement. There was nothing more gratifying than answering honestly, no the treatments don't scare me at all anymore...going back to where I was with this illness years ago...that scares the living hell out of me.
It's Friday, and I had another treatment today, and so far so good. But, I took a driver, I came home and rested and Dr. BFF took Sophie to the vet for me...this illness takes a team. And I am so grateful for mine.
I live in a vacation like setting, but honey this is no vacation. I am blessed to be in a warm climate, have a serene place to live with beautiful sunsets and a resort up the block where I can go and pretend I am on vacation. I am tired. Bone tired or this illness. And while at the doctor on Friday, I said to my doctor, it's just wherever you go chronic illness comes with you, there is no getting away from it, and I just want a break. I want to hop on a plane and go far far away but I can't. I can't go anywhere where it won't follow me. And that is the burden anyone carries with a chronic illness, finding the escape.
I know I am better and stronger. I am actually a working girl the past week...my doctor's receptionist left without notice and I offered to help out with the billing. My doctor asked, "are you sure you will feel well enough" and I laughed and said, "well if I don't at least I am at my doctor's office," and we both laughed. This was my vacation. It was a good test, a controlled environment, having the security of being with my doctor when my vision became blurry and I became light headed...but it also reminded me, "I am not lazy" - I am sick. So I "worked" a few hours two days this week and it felt good. I am not getting paid even though she offered because one, I know myself I would take it way to seriously and two it felt good to be able to help someone out who has helped me so much.
I am getting better since I even offered to do this, and was able to as she said learn something in a half hour that has taken her days to treat others, so with my "half" a brain I am still above average! I also today was able to meet a friend for an hour and sit outside and with encouragement got to the pool. While I didn't swim, I made it. While I was lying in the beautiful cool air with the warm sun, I overheard some elderly men talking, and one asked how the other was doing. One replied, "well, I'm vertical!" and the other laughed and said, "well I showed up!" and I thought wow, little do these men know that the slender, ipod wearing "young" woman lying on the lounge chair and them had so much in common...I showed up and often that makes all the difference.
I got this photo from my mom of my Uncle's car at the auto show. And when I got it all I could think of was a thought that hadn't crossed my mind in years, what would it feel like to just get into that car and drive...no destination, no worries about what food I could eat on the way, no worries about how I would feel after an hour in the sun with the top down, the freedom to just drive away. If I got in a car and just drove would I escape those feelings? Speed ahead of this illness?
I use to have this 5 speed red Jetta that I got one too many speeding tickets in, which said above Uncle lawyered my way out of massive points and into driving school...but looking at that car, and knowing that my aunt and uncle do that just get in and drive, reminded me of when I used to enjoy that feeling too. Maybe it's ahead of me...maybe.. Until then, Congrats Uncle Tom and keep enjoying the "drive south with the one you love..."