I have become that person. That lady with the invisible disease. Hello Auto Immune Disease, my name is Maggie and it’s nice, well not nice per say, but it’s notable to meet you.
My “Invisible disease” (because there’s no hard evidence as of yet, aside from my symptoms), is either Chronic Fatigue or Fibromyalgia. According to the neurologist, it could be early signs of something bigger that “we’ll just have to wait and see about”. I’m a sitting duck and until then, we are just going to treat it as one of the two mentioned above and hope it’s right.
I know this sounds hyper-paranoid and I also know I’m not the only person who has dealt with all of this, my own mother had Chronic Fatigue, my Mother-in-law has MS, a friend of mine has Fibromyalgia. This brings comfort, not that I’m happy they have these auto immune disorders but it helps knowing there are others out there. That being said it still feels very lonely. I feel tired, angry, sad, frustrated and dare I say the D word? Depressed.
It’s been a hard few years, so depression happens. I hate bringing up the negative but there’s no way to polish a turd. truthfully, the last three years have been filled with broken relationships, death of loved ones, medical issues and just plain old life thrown in the mix. Now, this. So where do you go when seemingly all hell breaks loose?
If I look long and hard enough at Instagram or Facebook, I’ll find any number of uplifting quotes designed to make me feel better about my situation. I don’t even have to look long and hard, actually if I just scroll down a few pictures, I’ll find one. And Oh Shit, I think I posted the last one, but there’s a kitten in the picture too so maybe you’ll forgive me. These little quotes draped over animal cuteness often say things like : “When you want to give up, push harder, success is around the corner” , this one has a turtle walking through mud, or alternately featuring an albino tiger, ” You are unique and you are the only you there is, don’t be afraid to be different”. I can appreciate these and the reason they are posted, I myself have definitely posted some that I thought had something great to say. But in the end, they are just words. Words have the power to wax elegant and it makes us feel all gushy inside, essentially they can butter us up emotionally. In the end, without any real action, without any physical push, these inspirational quotes remain empty, saccharine and powerless. Essentially posted quotes are the strippers of the internet, they make ya feel good but you go home empty handed and longing.
I want reality. My dad used to say, “Don’t spit on me and then tell me it’s raining”. Tell me the truth of the situation, I don’t care if it’s dressed up with flowers and butterflies, just tell me what’s really happening. And I think that’s the frustrating part. No one seems to really know 100 percent what’s going on with me medically. On top of this, there’s no blood work that can prove it. Not knowing and just following a formula that you hope works, is a bit unsettling. So how do I stay positive AND truthful about my situation?
I know only what helps me and I’ll be honest, as of late, most days aren’t good days. But what I have started to find help in, is meditation. I get up before anyone else is awake. No matter how glued to the sheets my body feels, I peel myself from it and walk to the dining room where my yoga mat is. I do yoga and pilates and then I focus my day and my mind. It’s not a cure all for sure and sometimes it’s easier on some days than others. Some days it changes my attitude and I walk in grace and awe at all the beauty around me. Other days, I stomp around and yell at “whoever left their damned cup sitting on the chair, come pick it up for the last time!” So, it’s not magic.
The other thing I am practicing is telling my mind ‘no’. When I get so inside my own head, I become very selfish and self loathing. I get angry at my husband or kids for not ‘getting it’. My world becomes small and I started pointing fingers at all the people and things that aren’t ‘right’. It’s a high horse to come up off of. But telling myself no and looking at the facts of this thing, keeps me better in tune with the reality of life right now. My husband ‘gets it’ and is trying to help , my kids are kids and honestly shouldn’t be concerned or worried about any of this, the docs well, despite what I think, I do love my General doc and I do trust that she is being a good advocate for my health. This invisible disease is just the luck of the draw. It’s not God’s will, it’s just life baby.
No one way works for everyone, just like all of life, we find our paths, the one that our hearts beat in rhythm to, and then follow it. Some folks find solace in group therapy, or just online groups. Some read all they can on something to gain a better understanding. Still others invest in their faith and religion. There are many roads to peace and happiness. Mine involves a bit of meditation, faith, reading, attitude adjustment and reminding myself I’m not the only person out there dealing with something that seems to eclipse the good things in their life. I am surrounding myself with positive people, cutting out the negative ones and enjoying weekend nights with my kids, my husband and my mom.
Life really is good , that’s not to say shit doesn’t get sideways on me, it does a lot. But as Agatha Christie said , ” I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing.”
To be alive is a grand thing. So, with Chronic Fatigue/Fibromyalgia Fog beginning to take over and not being sure how to tie this all together neatly, I say, go out and be bigger than your situation, be more than you think you are and stop reading this garbage and actually do something.