I’m Still Me….Just Slightly Modified

 

A lot has changed in the 14 years since I first got sick. I’ve gotten diagnoses, lost diagnoses, lost old friends, gained new ones, given up on old dreams and discovered new plans for the future. However, even though the years since diagnosis have been uncertain and will likely continue to be that way, one thing remains the same; I haven’t changed.

Well, that statement is not entirely true.  Chronic illness has changed me. I’ve learned patience, compassion and to be more accepting of my limitations.  Aspects of my personality have been altered, and I have been physically changed. But what made me *me*, remains unchanged.

I’m older now, wiser and a little more careful. But I’m still the same wide eyed optimist I was at 16.  I still dream at night of Karnak and the pyramids at Giza, although for now I settle for experiencing them through books and documentaries.  Hiking boots and ski gear are still in my closet and garage, in the hope that someday I will be able to use them. I’ve had one ski trip since life post illness, although, sometimes school and work have interfered with that. When I’m doing well I try to work ahead and save up money for that ever imminent rainy day.

I still make rash decisions, although now it is almost out of necessity rather than immaturity or lack of foresight. I can’t plan six months from now because I don’t know how I’m going to feel in six months. Yet, I’ve never stopped making spur of the moment plans to go here or there, or do this or that. I mean, I’m the girl who went to college on a split second decision. Fortunately, that didn’t come back to bite me in the butt.

I’m still the same stubborn girl I always was. The girl who never did anything halfway, the one who shot first and asked questions later. I have had to adapt, to make changes, but humans have been doing that for millions of years. It’s called evolution.

I still have the same interests and passions I’ve always had, just at a slower pace. I still love science, although some days my cognition is not as high as it once was. I’m always going to be a sports nut, just because I can no longer run with you doesn’t mean I don’t want to sit on the sidelines and cheer. My balance has suffered, so hiking uneven terrain isn’t the safest choice, rock climbing is definitely out, and I can no longer sleep on the ground like I used to. But that doesn’t mean I don’t want to come to your campsite and enjoy the outdoors for a few hours. It doesn’t mean I can’t take a walk on a paved trail.

I’m still me. I’m still a wild dreamer. I’m still overachieving. I’m still occasionally a daredevil, except my wild ways have altered slightly. I’m still me…just slightly modified.

 

Article written by staff writer, Agnes Reis

Agnes is a nursing student in Minnesota. She was diagnosed with CFIDs in 1999 followed by fibromyalgia the following year, along with lifelong allergies, asthma and migraines. She can be found at brigid22.wordpress.com or @brigid22 on twitter, but cautions twitter followers that there’s a heavy dose of sports and nursing along with the spoons.

©2024butyoudontlooksick.com
  • Patty

    Thank you so much for this! I feel like I could finish your sentences! I too have learned to play the hand I’ve been dealt and most days it’s a pretty good hand when I consider how far I’ve come since becoming sick and being diagnosed.

  • Tim

    Although it’s no where near the 14 year mark and I’m male, that entry could have come from the pages of my own blog.

    It’s taken me just over four years to get my head from inital hospital visit to here and I think, between the pyschological impact and the physiological impact, it has been my mind that has had the rougher ride.

    Not that I’m there yet, I think there’s still a lot for my head to get round but obstacles are put there for us to overcome.

    Today the glass is half-full…

  • Sherry Richardson

    Although in a different way, you just described my last 20+ years; however, it has only been since receiving my Lyme Disease diagnosis and treatment in 1999, that have I been able to modify my thinking. I have reached the acceptance stage and realize this is my life now and it’s most likely not going to improve much.

    I am thankful for the progress I’ve made fighting my illness and refuse to give up. I miss the things I could do and have many good memories that allow me to know that I once could do great things. The best part of my illness is, as you stated, I have become a better person inside, I think, and that is good.

    Thank you for this today. It was something I needed to read. Hope today is a good one in your world.

  • jemma

    wow, this could have been written by me! (if i had half decent writing skills!) i cant plan ahead anymore and love doing things spontaneousy on a good day and i still want to do all the things i did before.
    i wish for all spoonies to have more and more good days to do the geart things we all want to do. jem x.

  • heather morgan

    I have had my diagnosis of neurosarcoidosis for almost 2 years, and it is inspiring to me to see that there IS life after diagnosis.

  • Dale

    I can relate to all of you. Rhonda said it so well about crashing the next day after doing anything. I sometimes wonder if my issues are from foods I’m eating out when I go shopping or visiting with friends. Went to a b.b.q. last wkend. & was horrible the next day. I didn’t do anything to be that way. It happens all the time. We can never depend on ourselves anymore, or make long term plans. I feel like I’ve gotten lost along the way in Fibro/CFIDS land. It rules me & I hate that. Still, I know I am not alone & that worse things are out there, so I have to be grateful that I DO know that.

    Gentle hugs to all of you. We are not alone in our frustrations & as much as I hate knowing so many are like me, it is a comfort knowing others understand my daily struggles personally. The healthy world does not. Thank you. Dale

  • Leonie

    I really enjoyed reading this. While I missed a bike riding tour of Thailand – I joined my sister and a friend to go into the National Park and do some light kayaking. The Thais were so lovely with the long time it took me to get in and out of the kayak (we all had a laugh about it – and it was my fit healthy sister who fell in!). I slept on a mattress in a bamboo hut in the National Park! I gave the “hike” (like rock climbing without a safety harness) a miss. I was sick for many years before being diagnosed with Fibromyalgia. Pacing myself means that I can join in some things that I would have thought unattainable. Sharing trips with understanding family and friends is also helpful. Good luck to all of you – yes Rhonda, we need to keep going – but at a pace that suits us 🙂

  • I’ve been ill for 9 long years now. I can’t make plans because I never know how I’m gonna feel from one hour to the next.

    I am so tired of hearing but you don’t look sick. Or a snideful remark, well you look pretty good for someone being so sick. It makes me so mad to hear those two phrases yet i hear them on a monthly basis.
    Unless you have walked in the shows of someone who suffers from chronic pain you don’t understand and I try to remember that.
    I think I’m gonna have to blog about this or my comment will turn into a blog. LOL
    Anyway…just wanted to say I hear ya, I’m with ya, and I identify what your going through.

  • Rhonda D

    I am so tired of people not understanding the pain and sometimes lack of motivation. I get up and go to work for 12 hours on my scheduled days and many people can’t understand why when I come home, I just want to go to bed. Why isn’t there more treatment out there for people with Fibromyalgia? I have had Dr.’s tell me that its all in my head. But Continue to live and love!!!

  • Rhonda

    I have Crohns disease, and I feel this way all too often. I think there is more going on with me but I keep it to myself, because I don’t want to take more pills go to more dr’s or have more test done!! I am sick of being sick!! But just like everyone we try to keep going as best as we can.
    God, forbid if I do go do anything, I am wiped out the next day or so.

  • Jane W

    Thanks for sharing this as Tina says – most of us are in this struggle together, to keep feelings and body positive takes effort some days (well most days) but we WILL go hiking again ,even if in our dreams alone! x

  • Tina Blades

    This is how I have myself kinda been feeling lately… I feel like I have become this illness rather then a person with an illness…Thank you for sharing this I know many of us go through these feelings and struggles. I still try to make snap decisions as well and struggle most days with my mind saying oh let’s do this or that and I get excited thinking of things to do and my body saying nope I don’t think so … So still trying to learn of new ways and new things to do so I don’t drive myself crazy with all I have lost and am unable to do. One day at a time!

  • Agnes, a very well written article. Everything you are describing is the same feelings I think everyone of us “spoonies” feel. I know that I have gone through the same modification to my life as well. I was diagnosed with Lupus in 1999 and then MS the following year, plus other invisible problems that go alone with these diseases. But we have to move along with our lives the best we can. Website like BYDLS and others are a wonderful tool for people with our problems, so we can feel free to express our thoughts. I pray that you keep strong, and know that you are not alone. Thanks for sharing. <3 🙂

  • JUDY

    many thanx for telling it like it is! i have been on disability since 1995, due to multiple diagnoses~ie-fibromyalgia,depression,bipolar,and the list goes on. i totally understand ‘snap’ decisions, and saving energy for a ‘bad’ day. multiple spoons to you!

  • sara

    well written, i relate. stay you!!!!! I love being me and that’s what keeps me going….

  • Jen Martin

    Amen!!!! Beautifully written, and it sounds like me to a T. I’m still me…I’m still here, I miss the old me…however, this is the me now…Keep moving forward!!! xoxo

  • Patty

    WOW! We have a lot in common too! I was diagnosed with Lupus 14 years ago last Friday! It’s not hiking boots in my garage, but a beautiful blue bike that I look at everyday! I have been told to stay on stationery bikes for a while because my balance isn’t too great! Now we do things spontaniously because I am having a “good” day not because we are young and can do what we want! It has brought a sense of simplicity to our lives, however. And my illness, along with my son developing Crohns, has taught our family a sense of compassion and patience that most young adults don’t achieve for many years! Thanks for the article!

  • We have some things in common! I too have been ill for 14 years. And while I have heavily modified my life during those years, I still can’t bear to get rid of the hiking boots in the closet with the dust of Telluride Colorado on them, even though I haven’t been able to hike in 10 years and now use a wheelchair part time. I too have a “snap decision” personality, and it really burns me up sometimes that so much planning must now go into nearly everything I do. Deciding to eat gluten free bread instead of gluten free crackers is about as spontaneous as I get :0)

    Here’s hoping for fresh dust on your hiking boots and fresh powder on your skis.