It must be SO boring… #chronicillness #autoimmune #survivor #lifeskills

Of all the comments I have ever had since my health journey started over 8 years ago, the one question I could never have even guessed in my wildest dreams was “Aren’t you SO bored all the time… It MUST be SO boring being sick all the time!”. I think this highlights the invisibleness of what life is really like for people like my husband and me and that is why, in the interests of education and information I am going to take the time to explain my answer.  And my answer is  quite simply “I WISH!”… here is why…

Over the past 8 years neither my husband or I have slept more than 2 hours at a time and maybe 5 hours in total; on a good night. Every night includes 45 minute routine of showering, dressing, scanning for cuts, bruises, infections (potentially life threatening now that I am immune suppressed), coconut oil for my skin (skin dryness), deep heat on muscles and joints, eye drops (steriods) mouth gel (ulcers) compression gloves, TENS machines attached to legs and back, Meds, heat packs and hope that body will allow sleep to come. Two hours later, hubby is up to reheat packs, massage, rub, eye drops, mouth gel, water, … and repeat…

Morning and hubby gets up feeds the fur kids (who are willing and eager for their breakfast) while I do a mental inventory of what is sore, moving, working, hurting and wait… Hubby will bring me a meager breakfast so that I can take my meds with food and then get to work trying to move my muscles, joints and arms. We wait for pain meds to work (One hour or more)… then its time for the painful (mind blowingly painful) trip to the shower. One foot… two feet… Oh please kill me!!!! Shower. Dress. Deep heat, TENS machine, eye drops, mouth gel and coffee! YAY!!!! One day is devoted to chemo… Another day is devoted to a biologic injection (both of which is the equivalent to drinking two bottles of tequila at once and then wait for hangover to come)… We try and work and move those muscles!! Must make sure they don’t waste. Cant have them wasting away and making things worse; much worse. Outside time? Maybe. Until the pain becomes too much and/ or too much sunlight will send us back inside. Zimmer frames, wheelchairs, compression clothes, foot brace, back brace, whatever it takes to make sure I access the world. Blood tests. Scans. GP appointments. Specialist appointments (There are three, no, four specialists now to keep us amused)… but wait! … Here comes another flare / relapse!!! Cancel anything and everything! Body has pulled the plug and gone rogue! Complete shutdown and wait for reboot!… Wait and rest and hope that this one wont be too long. Maybe a week? Maybe a month? Maybe three months? Who knows… I don’t!

Birthdays, weddings, anniversaries, celebrations will just have to wait.

Weather changes mean possible flares. Common colds and infections mean possible flares. Stress means possible flares. Anything means a possible flare. A flare / relapse is what every autoimmune person fears more than death itself. More painful than a back alley colonoscopy!! It is the silent time bomb slowly ticking away, waiting to go off at any moment and causing unknown damage and destruction in its wake. I walk the thin line from wanting to fill the gaps with as much fun, love, joy, interaction, experiences and tripping over the line and falling down the hole that is over doing things and the risk of another flare. For every call I make, every hour I spend talking to a friend, every piece of artwork I do, every outing I get to take, it will take my body time to recover from it. So I choose as best I can, carefully as I can, who/what will I bet my body on today??

And then there is the an event which happens about twice a year now. Its called the ‘New drug’ game. And its the ultimate game of roll the dice, the ultimate bungy jump, the ultimate roulette game. Its is a REAL gamble! The waiting. The hoping. ‘Is this the one that could be a game changer?’ … [wait] … and here come the side effects!!! Please, please please let them not be so bad. I hope my body can get better at recovering from the pain, nausea, tiredness, weakness, lack of food, cramps, sweats, shaking, mouth ulcers and hair falling out before the next dose is due.

For me and my husband it is really like asking returned Veterans who have returned from a war zone, “weren’t you bored all that time on tour??…

Am I EVER bored? Never!!!

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