Chronic Fatigue Syndrome (CFS/ME) turns your world upside down. From my experience and the experiences of others I’ve encountered on social media, most of us are trying with all our might to stabilize our lives and make things as normal as they once were pre-illness. In this stabilization process we are forced to see so many things in our lives differently. Everyday is a struggle of one kind or another, and as that struggle becomes the norm we often forget just how far we’ve come. Today I thought I would talk about eight significant things I’ve learned along the way:
- THE ONLY SYMPTOM OF CFS/ME ISN’T FATIGUE – One of the widely debated issues with this illness is the name used here in the US, Chronic Fatigue Syndrome. The name leads one to believe we are simply fatigued. That just couldn’t be further from the truth. The truth is there are approximately 140+ common symptoms. The illness is also referred to as Myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), systemic exertion intolerance disease (SEID), and I’m sure there are more. I believe once the cause and cure of the illness is discovered the name will be more inclusive of the actual systemic illness, I hope so anyway. Until then we are faced with having to explain to people that we aren’t “just tired”.
- DOCTORS DON’T ALWAYS BELIEVE US – Many of us have story after story of doctors who simply either don’t believe us, or actually don’t believe in the CFS/ME diagnoses. They think we are attention seeking, lazy or depressed. If you have the energy during the appointment this link provides some good material for dealing with that frustration but I think it should be grounds for malpractice the way we are treated. The very angry part of me cannot wait for the cause/cure to be discovered as I would like to serve each doctor a big ol’ slice of humble pie.
- TO RATION OUR ENERGY – This is a steep learning curve, rationing your energy. Holding onto it like your prized jewels as a thief rifles through your home. We learn what we can and cannot do. We learn what’s worth spending energy on and what’s not. We also accept that the energy allotment on one day may be completely different than another. Some days as we attempt to rise from bed it feels like we are being pulled in the opposite direction from every fiber of our being. Similar to trying to swim up while be weighed down. Other days some of us can rise a bit more easily and we learn in those days where each bit of energy must be used. It goes a little something like this…If I shower today than the rest of the day I won’t have the energy for much else. I think it’s the hair washing and the bodies desire to stabilize its temperature that causes this shower fatigue, but I honestly have no idea. All I do know is that I love showering, I would love to do it every day, but unfortunately I have other things I would like to do as well. Things like making myself food and getting out for a little walk to circulate my blood. If we say no we cannot do something, trust me, a lot of thought went into our having to say no. And just so you know we are often really, really bummed out we couldn’t do whatever it was you got to go do.
- WHO CARES – We learn who can deal with people with chronic illness very quickly. Many, well let’s be honest, most simply cannot handle being around someone who is sick with this illness. I’ve yet to figure this out but it seems our illness is like a repellant, a people repellant. The good news, we do have one another for strength and support. Those of us without an abundant family around or lots of friends to lean on really feel the effects of loneliness. The chronic illness communities on social media can actually provide a great deal of support. I’m not going to sugar coat it, watching your friends and family disappear is a special kind of heart break, but knowing there are others who know first-hand and are no more than a keystroke away, helps.
- HOW TO SMILE THROUGH ALMOST ANYTHING – If you see us smiling it doesn’t mean we are pain-free or feeling great. I actually haven’t felt as good as I did the day before I got sick in 2014 since. Not. One. Day. We learn to smile in public or until we get home or are alone. The pain, the rejection, the humiliation, the looks, all of it, we smile with grace. We’re some of the world’s finest actors, not pretending we are ill, but pretending we are well enough to fit in to a society that frowns upon anything out of the norm.
- HOW STRONG WE REALLY ARE – We are warriors! Every day we push ourselves, our body telling us we actually don’t have the energy for this or that. Maybe it’s to brush your teeth or your hair; maybe it’s to fix yourself a plate. It’s the things healthy people just do to survive. Basic survival things turn into difficult tasks for many of us, and for some they are impossible. We push so hard, each of us in our own way. So if you see us out having a meal or taking a micro-walk please know we are pushing like a triathlete at the end of a race and we will be going home to rest for the day or the week, however long it takes.
- COMPASSION AND HUMILITY – We learn to be sweet to fellow chronic illness warriors, as well as ourselves. Many of us have been really mistreated by a variety of people (including our own bodies) and you just can’t know how that feels unless you’ve stood in those shoes. I feel this newly found connection, empathy and sympathy for the chronic illness amongst us. People are hurting physically and emotionally. They are angry, they are scared. Their bodies are trying so hard to survive but failing at the same time. It’s hard to relate to someone with those experiences unless you too have been in those shoes. We learn to stand tall for those people when they are feeling weak.
- HOW TO SURVIVE – The human body wants to survive, it fights like h-e-double hockey sticks to get the job done every moment of every day. Unfortunately no matter how hard it tries there are times when it needs help. This illness teaches us how to help care for our bodies in ways we never thought we’d need to know. We learn to feed it what it needs, we take anything and everything we can afford that we think will help it. We move it as much as we are able. We try so hard, every CFS person I’ve come into contact with is trying desperately to help their body survive, searching for answers, seeking advice or knowledge. Contrary to the belief that we are all sitting on the couch enjoying a tasty bowl of ice cream as we sink into the television, or our phones or computers, we can actually be found on social media seeking the latest information, googling for the latest research, and generally just hungry to have our lives back.
Hoping if you have this illness the learning curve hasn’t been too steep. Life can be very bittersweet, I hope you’ll try to find a reason to smile in every day. Even if it’s laughing at yourself because brain fog snuck in and reminded you that the dots don’t always connect.
Thank you for taking time out of your day to follow along. I appreciate it. A few of my recent paintings below. I haven’t really felt like the paintbrush has been in my favor lately but here they are none the less. The prompts were: A Freshly Made Bed, Favorite Landmark and Melt In Your Mouth Chocolate.