The ME/CFS and Lyme world lost Patrick Kelly (hubcap_halo) last week. Here in this message board post  dated Feb 15, 2008, Patrick clearly described how much strength it takes to “carry on as best we can.” Thank you again, Patrick.
ME/CFS People: We are Stronger than We Give Ourselves Credit For
I’m back on this board and that thought just struck me.
• I hear about people letting themselves be bedridden for 6 months on Valcyte because they want their life back – they want to work again, to spend more time with family and friends and be more active.
• We change our diets.
• We change jobs.
• We downgrade our standard of living.
• We move to new cities.
• We give up apartments and even houses and spend time in the back room of relatives or friends apartments or houses (much gratitude to them).
• We love coffee with cream and sugar but we cut it out, just on the suspicion that candida might be a problem even though there really isn’t conclusive proof.
• We give up a TON of fun vices and tasty foods just on the hope that eating nothing but fresh veggies, lean meats, fish, quinoa, some fruits will help cure us or at least get us back to working part time.
• We endure breakups that occur because of a relapse on the illness onset.
• We survive losing friends because of the illness or a relapse.
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• We try meditation, qi gong, yoga, light exercise, visualizations…
• We spend tens of thousands of dollars and travel great distances to see specialists who have complex protocols.
• We spend hours studying the illness ourselves.
• We offer support to each other.
• We try to keep a sense of humor even though we’re often angry or sad beyond words.
• We grow a thicker skin and learn that just because 3/4 of the planet thinks the illness is in our head – we blow it off when they say it. We often don’t fight them verbally, just to save our strength.
• OR we set them straight and cite sources, in the hopes that they won’t rake the nerves of the next ME/CFS person that comes along. We fight to make them understand.
• We’ve missed months, even years of our lives – and yet we carry on as best we can and with hope of better health in the future.
• We’ll try a treatment, and when the treatment makes us feel like sh*t we agree with our doctor, “That means it’s working!” And when the treatment makes us feel better we say “That means it’s working!” THAT, folks, is optimism.
• When a friend complains about the horribly busy day they have we don’t remind them they are darn lucky to be able to HAVE a busy day. But if they take it too far and say their vacation was ruined by one horrible day of being sick in bed, we stand up for ourselves and say, “Hey pal, try to keep your audience in mind a little.”
• I’ve logged 1,400 days in bed in the last 11 years. There are many who’ve logged more. That’s a lot of time to be alone with your thoughts and a painful body or fevers.
• Based on all the rest I need, a friend once said, “I want your job!” I assured her she doesn’t. I like working. I like being busy. I like being healthy.
We are stronger than we give ourselves credit for.
– Patrick Kelly (hubcap_halo), 2/15/08