Taking Back Sunday
This article was originally published on kindlycara.com
Please go check out Cara's wonderful blog about her experiences living with M.E. - you'll love it we promise.
What does Chronic fatigue feel like? This is a question I am asked a lot, and I've never had a clear answer for. But I do want to try to give some insight as best I can, after all that is what this space is for. Not only do I want to share my positive spins on the lessons I've learned through this illness, but I also have decided it is time to try and articulate the harsh truths of what this illness looks like for me behind the scenes.
The truth is, what anyone sees of me is about 20% reality. The reason this is referred to as an invisible illness is because I don't look sick, and when I am really feeling terrible I am really good at hiding it. This isn't a pride thing for me, at least not anymore. This is because if I am working or I'm out with friends or even just running a simple errand I can be fine one minute and in the very next I know that I am about to have a crash. If I really let on to how bad I felt I wouldn't be able to focus on getting myself home safely.
That becomes my number one priority, to just hold on until I can get home and then I can fall apart, that is the deal I make with myself. I have been in the frightening situation where I have been in the middle of town running a simple errand and all of the sudden I feel it. My heart races, I can't make any decisions, or even talk coherently. It's all I can do to find a bench to sit on in front of hundreds of people rushing around me, and quietly cry to myself, half hoping a stranger will stop and comfort me and half hoping no one notices me.
I try my hardest to gather myself enough to dial my husband, I know he can't come to get me because he's at work but I call because I know that just hearing his loving voice will calm me down enough to make another call to my friends I am hoping are close enough to come and help me. It just so happens that they don't answer and I can't think of anyone else to call because I've used up the brain power I had left.
Just then a homeless guy comes over and asks me if I'm ok, and I burst into tears at this small gesture, I can't speak but I nod and start walking to the taxi stand only a few feet away. He follows me, opens the door and tells me to take care of myself and that it's going to be ok. This act of kindness is what gave me the strength to hold it together in the cab and walk the short distant to my door, unlock it and fall right into my house unable to get up off the floor again I just sat there and let myself sob. I later crawled to my bed and watched one of my go to shows to comfort me into a slumber.
This isn't an exaggeration, and this isn't my only story of a scary crash I have had that nobody but my closest friends and my husband knows about. It's what I call the dark side of my illness. And sharing it has always been a struggle for me. The truth is that most every day is a challenge to overcome. Some days are better than others, and in the last few months I have had fewer and fewer of these frightening episodes. But I still hurt every single day, I suffer from fibromyalgia as a symptom of M.E. which is severe nerve pain, as well as inflammation of my spinal fluid which causes the brain fog of not remembering simple things or not being able to make decisions or finishing my thought mid-sentence.To combat this at work I often go in the back and bend over to touch my toes to relieve the pressure off of my neck. I also can only stand or sit still for limited amounts of time before my heart starts to slow in its ability to circulate my blood to all parts of my body. That is why I only feel true relief when I am laying down flat.
And of course there is the fatigue, the hardest symptom of all to describe to others. The reason I refer to my illness as M.E. instead of CFS although they are commonly interchangeable and do usually refer to the same illness is because Chronic Fatigue Syndrome is named such because doctors and insurance companies would rather it be classified this way, syndrome means it is classified as a psychological illness. The term M.E. or myalgic encepholomyelitis refers to an illness of neurological origins, as well as ties to inflammation and the immune system after more and more research is thankfully coming to light in the medical community.
A friend and fellow M.E. sufferer told me calling it Chronic Fatigue Syndrome is like calling Alzhiemers disease "Chronic Forgetfulness Syndrome". I really like this comparison, it puts a context to how insulting it is to the sufferers.
A good example of my fatigue came to me full force last night, I had a great week of work, busy but not the type that should run me in to the ground. When you work with this illness you try very hard to estimate what number of hours is enough without being too much. But at its very best, it is still only an estimation, so then very small extra expenditures of energy can tip you over the edge. Stopping on the way home for groceries, cooking your own food, even showering all have to be prioritized and accounted for in your energy bank account. So when fun plans come into the mix like eating out with friends or going to see fireworks for bonfire night this is a maybe at best. This is why I can't always make plans with people. This is what I mean by I have to see how I feel that day.
Last night was the famous 5th of November, Guy Fawkes night (also referred to as bonfire night) a huge English tradition, which I would compare to our 4th of July for reference of how big a celebration it is. I had it in my mind all week, I would go just to see the fireworks, get myself a hot chocolate to keep me warm as I waited in the park to see the show and then to see the lighting of the huge bonfire. I love fireworks of any kind for any reason! I got home from work to eat some dinner and rest up before going out, I had an hour before I needed to leave to get some hot chocolate and make it back in time to see what spot would be the best to see the show. But in that hour instead of feeling better and better after resting I felt worse and worse, the familiar pain and fatigue so strong it felt as if my whole body were on fire. I could barely lift my arms to answer my phone let alone get out of bed. It feels paralyzing and painful to be so tired.
I had a flash of anger and frustration and then just a deep deep sadness. I felt betrayed by my own body, I thought I was doing so well. But there it was, the reminder that I am still suffering greatly from this illness. I knew I would eventually be ok, that I still had so much to be thankful for, and deep down I knew I was still recovering from the surgery last week so it was foolish to beat myself up for being so tired. But for a few minutes I pushed all that aside and let myself feel sorry for myself, to feel hurt, feel all that has been taken from me, feel resentment for others who take advantage of their health and their bodies, to feel the heaviest fear of all which is what if I never feel any better than this? what if it actually gets worse? I allowed all these thoughts and then I said to myself that I will wait until 7:28 and if I can muster the strength I will walk out and watch the fireworks from the edge of the park. And at 7:30 I was watching the sky light up, and I cried and I smiled and I said I was sorry to myself for all I said out of pain and anger.
Cara's blog: kindlycara
Cara's Instagram: cara.s.pascual