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In praise of being a good patient, not a great one

In praise of being a good patient, not a great one

I got sick the way Hemingway says you go broke. 'Slowly, and then all at once.' I got 'better' the same way. As weeks and months went by I would wake up and things that hurt before no longer did. I would later have to revert back to my journal to see how many joints were originally out of whack. When I was at my worst my patience was essentially and understandably non existent.

It took almost 18 months for me to get to 95% of my former self.

One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation is with an enduring new reality, you want to be understood in a way that you can’t be. To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. Complaining of fatigue sounds like moral weakness to those who often find themselves sleep deprived due to a busy, full life. They don't know the difference between their exhaustion and your 'walking through wet cement' fatigue. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.

“Pain is always new to the sufferer, but loses its originality for those around him,” says some French writer who proclaimed, “Everyone will get used to it except me.”

Online, scores of people who had rheumatoid arthritis or another AI disease reported that through diet they had halted or even reversed the progression of their disease. All I had to do, according to the “integrative” practitioners, was muster the will power to change my life. My DMARDS were the Band-Aid; failing to address the larger problem meant that I might get sicker. That larger problem, according to many of these people, was a susceptible system thrown off by toxins, hormones, stress, lack of sleep, and gut problems caused by an inflammatory diet, “bad” bacteria, and unidentified food sensitivities. I went all in and joined the "Alternative, Natural Way out of this mess Club" with all the bells and whistles. ( I didn't, however, give up on the traditional meds during the interim. There was just too much at stake as I had bone erosions on both hands and feet at diagnosis.

But, god, how I wanted to be you, and essentially, I already thought I was. Essentially. But not 100%. So although I was an accomplished athlete, health nut, never smoker, meditating veggie eating geek. Maybe, just maybe, I wasn't good enough. So I changed my diet. Spent loads of money on functional docs and clinics. Took tons of supplements and herbs ,which some, made me sicker and more nauseous than MTX ever did. I also added bioidentical hormone replacement, concocted all the golden elixirs of turmeric and essentially became a 'great' patient by doing absolutely everything in my power to beat this disease.

18 months later I came to this conclusion: I am not you.

I am not blessed with the type of arthritis where lifestyle changes make a big difference to halting my disease and my willpower has absolutely nothing to do with it. Being a 'great' patient rather than a good one is too tiring and too all consuming. I want to live. I want to wake up on good days and not think about my body or how I'm suppose to get 'cured' Essentially, I want to relax and take a nice deep breath and trust that I'm doing ok. Sometimes even better than ok.

My update now is that I am a little over two years into my diagnosis and can do all the things I've done before. We spent 6 days over the holiday Ski touring from hut to hut with 4 of our closest friends. It was cold and we all stayed in the same room with wall to wall sleeping arrangements. Four in our group, including my husband, all got pretty sick- the flu, heavy cold, you know, the typical seasonal crap that we all get thrown into. I was terrified that I would get very ill as I am on a Biologic and how stupid was I to think I could bare the bitter cold and sniffling, feverish buddies, not to mention the physical strain ski touring in the high mountains of Switzerland provides? I didn't get sick. Not so much as a sniffle. ( It should be pointed out that I also did not get the flu shot this year but it is equally important to note that I have never gotten the flu in my life so perhaps genetics are on my side here? I guess my point is that not all Bioloigcs or traditional DMARDS are going to cause trouble for everyone and until something new is proven to provide help for us I'm just not willing to put my body through another 18 month experiment. Remembering, however, that my lifestyle pre RA was pretty darn healthy. I'm fit, was never overweight, I cook my own food- haven't walked into a fast food restaurant in over 20 years, I never smoked and really never drank.( I'm probably incredibly dull to many of you but damn am I happy biking, skiing and hiking in the mountains) This is just me. I wish the opposite was possible but for now since I jumped straight away into an aggressive treatment we are now tapering the dose and have spread my Biologic out to every 6 weeks rather than every 4 and dropped the MTX to 7.5 mg we tried to do away with MTX altogether for 5 months but that didn't work which led me further to believe the lifestyle changes didn't kick in and allow me to get off the meds either. I'm now back on 7.5 mg of MTX and the Biologic. The most important thing for me is to let those newly diagnosed see that there are people, like myself, who do well with little repercussions on traditional meds and find that it's possible to get your life back.

I wish you all the very best for this New Year

Lucy

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An amazing post - well done you x

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A great read and well done xxx

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Very well written Lucy. Oh, and I must say "Welcome back!!" Your thoughts & your knowledge is very valuable to us.

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Thank you very much for your post.

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The key seems to be , find a method that works for you. Hopefully the new year will bring a combination that works for me.

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Yes, and yes. I’m pulling for you to find the combination that works for you Damage-and soon!

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So pleased for you, although sorry you had to struggle to get to where you are now. But yes it is so wonderful when days can go by without one having to think too much about having a chronic disease. May it only get better for you.

An uplifting post, so thank you.

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Thank you so much for your post. It was very encouraging to read about your great progress and also your description of trying the alternative, miracle treatments . I am at the stage of feeling " not good enough " having chosen the Dmards after a lot of heart searching but left constantly wondering ... But it's only been a year so far and what you wrote is really helpful. It's good to dream of being on top of a snowy mountain.

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Thank you for this encouraging and thought provoking post. Inspiring to hear and long may it continue. Happy new year to you.

Diane

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Such a beautifully written and inspiring piece - very helpful to those of us who are still on that journey to try and get back our 'normal', and gives me hope that that is indeed achievable, in spite of nothing working very well so far...

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