I have a chronic condition, it could be worse - i could have a chronic progressive, for instance rheumatoid arthritis or chronic terminal - ALS or Parkinson's - but none the less - its chronic - and there are many days i wonder - will i remember what it feels like to be well? Or has this new reality integrated itself into my cells to the extent that i won't have the ability to remember what i was like before. I have those moments of relief, the brief one's where i feel exactly like i did before all of this - despite their fleeting nature they are tiny reminders of my hope that once i get better i will remember. The longer this goes on, and you are continually forced to alter your lifestyle to manage this illness - which habits will take a firm hold and continue the path of dis-ease? I continue to focus on the goal of stringing enough good days together, that a new rhythm will be born. But what about all the habits that have been formed to make the best of each day...will i easily let them go?
I have had a few people mention to me that they didn't' realize how bad it had gotten or said they weren't sure how to approach me regarding this illness, and i take responsibility for that - i had been so afraid if i "acted" the way i felt - that it would be a reality that never left. So i would do my best to get it together for brief moments of time - i had learned long ago dealing with panic disorder how to act completely differently than the inner turmoil i felt inside. I also was struggling with doctor after f'ing doctor that kept telling me this was all in my head. So for two years, I was fighting to stay above 100 lbs, fighting through a fog of crappy anti-depessants that i didd't need - and wondering if i wasn't just crazy. That is not my story alone it is shared by so many of us suffering from this illness. Therefore, it was difficult to know what to say or how to act - i was literally just surviving.
This past few days and the next two i have been and will be in phoenix by myself - and despite living many years on my own - its been rough. This illness has forced an already cautious person to become hyper-vigilant. We needed to make food in advance in case i couldn't leave the house, i have my doctor's home cell number because she is a saint, and luckily my good friend's schedule has allowed her to stop in last night and this afternoon. I laugh reminiscing that i once counted all the places i had lived at from graduating high school until now - I had lived in over 20. Sometimes alone, others with roommates, from Milwaukee - to Colorado - California to France. I had no dishwashers, basement laundry, street parking...none of that mattered - the point - I loved my independence and I loved the constant change. Forced to be dependent on other's is a reality that I had fought hard against in the beginning. Its also difficult because as much as i would like to pretend CFS/ME hasn't taken a part of who i am at the core - it has eroded many of the characteristics i had defined myself by. I use to be comfortable in the presence of anyone...but now
Its a double edged sword, I need help, but it takes a lot of emotional energy if it isn't the "right" person - i don't mean the most loving, or nurturing - it takes someone you feel extremely comfortable with that has accepted this new version of yourself and doesn't expect to find the old one.
You remember when you first went off to college, became a new mother or father - or took a grown up job and with these changes met an entire new set of friends - and then you thought - let's all get together - your "childhood - known you forever friends" and the "new" friends; in your blinded excitement you are shocked that perhaps when these groups co-exhist they have nothing in common or don't bond - well bingo - they don't. They know two different people. They have different experiences with you and have formed their own "picture" of who you are based on their current information. The beauty of your friends forever is that they are more like siblings - and they have formed a deep understanding of what makes you tick- the flip side is that its often harder for them to see that you have changed - and in my case not by choice. This is how I feel much of the time - people see me, but no longer know exactly who i am -
I would give anything to be all the adjectives that I had been proud to define myself as before this illness -
I took pride that i was a loyal, dependable friend, easy to be around, could adapt to most any social situation, could give someone my full attention, loved to travel and go out to dinner. I was an extremely hard worker, loved to volunteer, and could hang for hours with friends - but this illness has slowly whittled away many of the parts of me i was most proud of. I just don't have the energy - I try not to focus on what i have given up, but it is the current reality - heck, for example i haven't been able to go and get my hair cut - i am now allergic to hair dye (which i loved) the smell at salons irritates my entire nervous system - i can't plan in advance, and i need a haircut that i doesn't require a blow dry or on some days even comb out - pony tail it is...this is the new reality. I'm resourceful and find solutions, for instance my cousin Paul is generous enough to makes a house call - but its not the same.
I'm no longer the easiest dinner guest - since i have loads of foods you can't serve and i may cancel at the last minute- i have this insane sense of smell that if you are wearing too much cologne or have scented candles i begin to get a massive headache - if the room is too hot i begin to get light headed - if there is too much stimulation and i am having a weak day i can't focus on all the conversations - i no longer can drink - which i never did to excess - but boy would i love to be back at Vitucci's with a Captain and Coke! I get it - I look the same, and most days put my best smile forward and act the same - there in the language is the truth - its a lot of acting. Everything that defined me so easily, i have to fight to save. So all of this together forms a snippet of my former self - and i have found some people have had a tough time knowing how to deal with this "new" person - hell - I don't know how to deal with her either!
So, I will tell you what helps - patience helps. understanding helps. kindness helps, a note or a text helps. Following this blog helps. Accepting that i am a smart person and the treatments i have chosen i have chosen because i have researched it all and they are the best for me. Reading about this illness and understanding, that maybe i didn't share all the crappy details because i just kept thinking - tomorrow - tomorrow they will go away - but many tomorrows have passed and i'm still fighting.
Its still me - but to pretend it hasn't taken a bit of who i am - that's just 'magical thinking (joan didion)' -
this makes me smile...sweet G.P.