Sunday, 27 October 2019

GUEST POST by Jess - The Reality of Living with Chronic Illness

Chronic Illness Sucks.

There is no going for brisk walks or a run, all I can do is sit and at times that is a challenge. My physical state has become the sorry remains of a once thriving gym goer. Most of my muscle have atrophied. Simple things such as water bottle lids are a struggle. I am limited by digestion to small portions of healthy foods on a continuous basis. My skin has suffered with dryness and easy bruising. The hair on my head is of all sizes from thinning breakage due to poor health. I am chronically struggling to maintain functionality. 

To the healthy eye I may not look sick. My age appears a bit more than what it is, but I have no neon signs pointing to my internal disabilities. You cannot see my heart rising 30 or more beats within seconds of standing. You cannot see the vertigo set it or the ringing screams in what is left of my hearing. What is visible is the shaking. The uncontrollable shivers without a cold wind. I have seen mothers become defensive as they get near me in public during such flare up. 

What is sleep? I can remember being young and staying up for days on end with no effect. On the reverse, I could sleep all day on the  blissful cold side of a pillow. Lately I find myself going to my room shortly after I tuck my little ones in. I do not sleep though. I stretch and stare trying to calm the muscle spasms and pain. The few hours I might catch like to awake me with dislocated limbs and pinched nerves. 

Pain is a mindset I have grown accustom to. It is a constant in my life that fluctuates, but it is always there. There is no end to it, only blurring. I have mastered the exhale as not to scream when high levels catch me off guard. I can relocate my shoulder, knee, ribs, and several fingers and toes without hesitation. Yet I am constantly asked what is wrong, and why am still complaining about it, just for answering their question. 

The questions are endless. Everyone wants to know what is wrong. The list is so long I try to bunch the main issues into umbrella terms, but then they want a further explanation. It all ends the conversation the same. Wow that sucks and you should try [insert yoga or vegan response]. If I could be cured by someone without any medical training simply because they heard something on the internet or from their cousin Janet, I wouldn’t be wasting my time with the vast collection of doctors and specialists it took to get this far.

There are many who simply do not believe there could be this much wrong with someone who is smiling. It took me almost a decade to be taken seriously. Many emergency room visits, testing, poking, prodding, MRIs, CT scans, and professionals who couldn't care less. There was one medical professional who asked if it was anxiety, disregarding my formal diagnosis’ that listed my tachycardia issues. They put anxiety in my chart.

The hardest part about being chronic is the effect on my life. The last time I took my kids to a museum resulted in a nasty flare up halfway through an outdoor trail. I missed the dinosaur exhibit. I couldn’t go on a simple nature trail with my kids without becoming ill and almost passing out. I cannot run, jump, or play with my kids; something I would love to be able to do and I feel that it is not fair to them. 

You cannot see what is going on with my autonomic nervous system, my brain, my eyes, my ears, or my joints. I assure you; it is not ok. I will not complain about it openly. I will try and push myself to avoid showing how bad I feel. I have to choose my friends very, very, carefully. I do not need any more people telling me to get over it or roll their eyes when I don’t stay out late, or I have to sit down a lot.  Chronic illness is torture I disguise with a smile.