What Does Chronic Illness Look Like?

Living with pain seems to be all I know. In the last few months it’s gotten worse, especially since my father pulled away from me. Again. My mother did this years ago so I’m no stranger to neglect, but anytime my father isn’t happy with my life he lets me know he’s disappointed in me; this hurts. 
I made the mistake of asking him to co-sign a line of credit for me to use for school. I went back in my thirties to get in to fitness and personal training. I LOVED being at the gym. Pushing my body’s limits, being drenched in sweat, and my own personal accomplishments. I was robbed of all that due to an emergency surgery. I have Endometriosis. In my case, my entire endocrine system is fused together by a clump of cysts. They tried to remove the large ones but there were far too many. My bowel, uterus and kidneys are so fused together, they were concerned about nicking other organs while operating. My surgeon said and I quote, “I’ve never seen anything like that”- startling. I had experienced several cyst ruptures and a large amount of blood and toxic poison was just sitting there in and around my stomach. I had some cysts removed from my ovaries but many remain. I’ve been nauseous almost every day for years now, which could be the Fibro but could also be connected to the Endometriosis.  

 

Symptoms of Fibro

 
The Fibromyalgia diagnosis came first. Endometriosis on top of that. I was well on my way to a living hell. Add to that, degenerative disc disease, Osteoarthritis and a host of food and chemical sensitivities. I was 37 but medically, I was more like 60. At my last job, I honestly spent more of my shift throwing up in the bathroom or sweating profusely. Brain fog. Stuck in a state between awake, asleep and dreaming. A nightmare. My (ex)wife, Doctor and I decided that I couldn’t keep working. Not even part time, due to the unpredictability of my symptoms. It gets worse every year. I wake up most mornings so weak and dizzy that when I get out of bed I have to hang on to walls to keep from falling. Throughout the day my speech and vision become impaired. I am so tired that I can’t even hold my body up. (I am currently writing this propped up in bed with pillows.). I don’t remember the last time I felt comfortable, let alone pain free. I get swelling around the base of my skull which causes migraines and vomiting. My hands puff up so bad I can’t grip things like a tea mug. My legs and feet also swell. 

  
Winter is the roughest part of the year, the cold hurts my body. Everything tenses up and I shiver uncontrollably causing more pain however, too much heat makes it difficult to sleep or get comfortable. It makes it hard to breathe. The lack of sleep can become emotionally and physically taxing leaving you feeling completely drained.
The crushing, ever-present fatigue that comes with these chronic illnesses deserves a paragraph on its own. I don’t get tired; I get mind-altering, crushing fatigue that WILL NOT let me keep my eyes open. I throw up from being so depleted of energy. This – coupled with pain and frequent flu symptoms – makes it impossible to lead a normal, productive life.

  
Well over a year ago, my ex wife left me. I think that she thought I was lazy. She would make passive aggressive digs at me – that I didn’t “earn” things. Things in the house and the money were HERS – not mine. She stripped away any remnants of confidence or self-worth I had, leaving me feeling absolutely useless. I couldn’t have children (which she knew from day one) I wasn’t wealthy (which she also knew and accepted from day one). She didn’t love me “through sickness and in health” like our vows said she would. She turned mutual friends against me telling people I was “just lazy”. She clearly didn’t love me enough to stick by me. She didn’t love me enough to even bother learning about what was even wrong with me. I was lost. I tried turning to my family but they didn’t care. My father’s encouraging words were for “me to suck it up”.

  
I am still lost. What are you supposed to do when you can’t work?  

I can barely walk, talk or perform everyday things that you take for granted. Things like taking a shower, making a meal or doing regular housework. Because it’s not a cancer diagnosis and I’m not in a wheel chair (yet), my family doesn’t understand how truly disabled I am. They don’t understand that between daily crippling pain, severe childhood trauma, feeling so exhausted and depleted- I have very little quality of life. I have a fiancée whom I am very much in love with and a dog I adore like my child but beyond that… I will never be a great success of any kind, I will never be wealthy, or even financially stable. I will never have a family, a home or even a car of my own. I have one last thing I’m holding on to and that’s love. It’s kind of the only thing keeping me going right now.
So right now, I have zero money. Actually, I have negative money and I can’t afford my payments. When the phone rings? Immediate anxiety and nausea. I feel like answering the phone whilst stomping the shit out of it yelling, “No! I don’t have your fucking money! Again! For the 75th time this week you all important Gods of Fuckery!” I’m losing my damn mind. I am so worried and stressed over it, I’m not really eating or sleeping which is making it worse. I am trying to apply for disability and get in to this pain clinic that also treats people with PTSD. I have a crap load of blood work to be done and other tests to rule out MS, Lupis, Lyme’s, Parkinson’s and all the other big neurological illnesses.  
It’s like being 2 different people. You have what you consider, “Yourself” which is that small percentage of time where you’re not in crippling pain, hugging toilet bowels, Hell, you may even get out of your pyjamas and experience life once in a while. Then there’s the other side of you. The side that is fed up, miserable in your own body, not understanding the simplest of things, wanting to give up and waiting for death. I have a little voice in my head those days that tells me I’m useless, I’m worthless, I’m a loser, I disappoint everyone and I ruin everything I touch. I hate that voice. Hate it.
My Father is disappointed in me.  

He’s called me. Angry. He left a nasty, cursing message about me taking care of my loan. I’m trying to explain to him that I’m really sick but he just talks over me. They (my Father and Step Mother) down play it, make fun of it, think I’m making it all up. WHY ON EARTH WOULD SOMEONE CHOOSE TO BE CHRONICALLY ILL?? Not that you can choose this any more than you can choose to become diabetic, or to get cancer. It’s just thrust upon you. It’s even harder being sick with no support system. I’ve never had one of those though. Ever. Which is why I’m at my breaking point now.

 

If you could see the pain

 
“Chronic pain and depression increase the risk of suicide (Barkin et al., 2011, Calandre et al., 2011). Social support and family self-efficacy moderate the relationship between family problems and depression in patients with FM (Libby & Glenwick, 2010), and support from a closer social network reduces anxiety and depression, and, therefore, also helps relieve pain” (Salgueiro et al., 2009, Sanchez et al., 2011).
So now here I am, in a city where I don’t know anyone, where there aren’t ANY doctors seeking new patients. I haven’t a dollar to my name but I have this loan hanging over me. Looming. I really don’t know what I’m supposed to do. There’s nothing I can do, I’m a bloody mess and according to my Doctor (in another province) I’m in NO CONDITION TO WORK. 
I love my parents but they are impossible people. My father and mother have always been more concerned with themselves than me. I have frozen in winters because I couldn’t afford heat, I have starved. I’m starving right now! I have had to go without medication. I’ve had to go without so much in my life because of this. They just don’t see it. I can’t keep taking the abusive phone calls. I just don’t know what to do.
I want to propose a campaign. I know we don’t like to be seen on our bad days, and tend to avoid people whilst relying on our heating pads and pain medication…the fact that we isolate ourselves and hide away from the world is means that people don’t see us at our worst. 

Let’s put a face to the invisible illness.

Use the hashtag #FacesofFibro. Snap a pic during your flare ups ( #FlareUp) and spread it on Facebook, Instagram, Twitter, Tumblr, whatever you use. Let’s show people how it looks to suffer in silence.

 

My #FaceofFibro

 
In all the articles that I read and all the support groups I belong to, one constant remains strong : people do better when they have the support and love of the people they hold dear. What if you don’t have that, though?  
Live Humbly, Be Charitable, Live Graciously,

SparkyLee

Image Sources
Young Woman Lying In Bed And Having Migraine” by FrameAngel www.freedigitalphotos.net
Woman With Cold Sneezing Into Tissue” by David Castillo Dominici www.freedigitalphotos.net
Lonely Sad Woman Deep In Thoughts” by David Castillo Dominici www.freedigitalphotos.net
“If Fibro was visible, this is what it would look like” Pinterest
Image of the Symptoms of Fibromyalgia http://www.medicalnewstoday.com/articles/147083.php
Image of Fibromyalgia searing flare points http://www.medicinenet.com/fibromyalgia_pictures_slideshow/article.htm
Photos of myself on “Flare Days” taken by me
Article cited: “Effectiveness of Three Types of Interventions in Patients With Fibromyalgia in a Region of Southern Catalonia” /collaborated on by Pilar Montesó-Curto, PhD; Montserrat García-Martínez, PhD; Carmen Gómez-Martínez, MD; Sandra Ferré-Almo, MD; Maria Luisa Panisello-Chavarria, PhD; Sara Romaguera Genís, MSN; Maria Luisa Mateu Gil, MSN; Maria Teresa Cubí Guillén, MSN; Lidia Sarrió Colás, MSN; Teresa Salvadó Usach, PhD; Antonio Sánchez Herrero, MD; Carme Ferré-Grau, PhD) http://www.medscape.com/viewarticle/852823_2 

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About SparkyLeeGeek

I'm a cheesy broad with a good sense of humor. I'm also a self professed geek, dog lover, Whovian and music snob. I have earned money by painting, I've worked in call centers, with dogs and in the fitness industry. I also write for Bubblews http://www.bubblews.com/account/165359-sparkylee74 and I have 2 separate blogs on Blogger: "My Whovian Take" a blog dedicated to Doctor Who and "Life in Fog Goggles" a blog dedicated to daily life and living with Fibromyalgia and CFIDS. I will be featured in an upcoming Anthology for HorrorAddicts.net titled "The Horror Addict's Guide to Life" My interests range from Doctor Who, dogs, and Science Fiction to Zombies, Humor and Astronomy. Creativity is my passion.
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