Strength, Good People, and Independence…How Has Chronic Illness Changed Your Life

Last week, which was also the four year anniversary of the onset of CFS in my life, I had planned on writing about the ways chronic illness has changed my life, but honestly emotionally it was too painful to even go there. You know those things you want to write about but you know the emotional toil is best left untouched? Fast forward a week, and I’ve processed through it a bit and thought I’d touch on my experiences. I could go on and on with every little detail, but you’d get bored and it’s still a little touchy, so I’m going to skim the top three ways chronic illness has impacted my life, namely with regard to strength, people, and independence.

  1. Strength – Truthfully, I’ve always been strong willed, stubborn maybe definitely, and definitely not a quitter. I’ve stood loyal to many things/people in my life long after many others would have walked away. High five to all you co-dependents out there.🙋🏻‍♀️ Did giving so much eventually lead to illness? I may never know, but I was diagnosed with fibromyalgia in 2004 and for 10 years I kept plowing through, not wanting to let myself or anyone around me down. I never let it stop me, but unfortunately CFS didn’t allow me to do that, it literally stopped me in my tracks. The strength I wore like a suit of armor to push through life didn’t disappear when I got sick, but it had to be reallocated. With chronic illness you don’t necessarily lose who you were, you just become someone new with those same character traits, and a few more. I’m still strong, although outwardly I appear weak. My strength no longer lies in my physical abilities to conquer life as a parent, an employee and significant other, it’s my mental abilities to do things like make tea on flare days, make it to doctor’s appointments, and shower even when my energy is completely amiss. I guess you could say my strengths are now primarily invisible, but they are still very present, in fact I’m much stronger today than I’ve ever been. I’m wondering if anyone else feels stronger than ever despite actually being physically weaker than possibly ever?
  2. Good people – This has been one of the top-five challenging changes. You really get to know people when you have nothing to give them. I don’t want to go all negative here, I’d rather not feed that negativity. In fact, I’d rather give credit where it’s due. To those people in my life who have chosen to be there, to listen to “all the latest research” over and over, who have asked how I am, who have made an effort when I’ve not been able to make any effort at all…they are my favorites. I respect and admire them because when they could have walked away, they didn’t. Good people are seemingly few and far between and I’m very thankful to have a handful of them in my life. I know there are a myriad of reasons why people fall away, I’m not saying everyone who does is bad, life happens…I get that. I’m just saying that the ones who have chosen to stick around are totally my favorites.😊😘
  3. Independence – This has been the hardest change outside of my failing health. I’m ferociously independent. Having been raised as an only child with very hands-off parents I’ve been doing things by myself almost as far back as I can remember. And now…every little detail in my life feels dependent on someone else. I can’t go for a drive, I can’t go grocery shopping, I can’t go visit a friend, I can’t get to an appointment alone, I can’t walk my dog, the list goes on and on. Where I live there’s no bus or train within walking distance. There are Uber’s but I have no income. Everything, and I do mean everything I need to buy comes out of someone else’s pocket. It’s like I’m a stranger in a strange land, foreign to everything I knew and I’ve had to learn how to adapt, how to survive. Honestly, I hate it. I’m not thankful, I go through waves of feeling absolutely trapped, in my body, in my life. But then I remind myself to get back in the moment, in the here and now, paint, listen to music, absorb yourself in something, be strong and keep going because this is as good as it gets right now. It takes more strength than you can imagine to look in the mirror and know that you are more alone than ever, yet dependent and frail, but you still have to remain so, so strong. It leads so many chronic illness sufferers down the darkest of paths and my heart just pours out for those amongst us who are really struggling. I’m always here if you need to chat.🌸

In a nutshell, and without ‘poking the bear’ (delving up stuff too upsetting) those are a few things that come to mind as having changed over the past four years. Wondering if others feel similarly? We all experience illness differently, we are all at different stages in our lives. I would imagine our challenges, and changes are based on where we were when each of us got sick. At the onset of my illness I was told (at the first doctor’s appointment in the first week I was sick) I probably had been overworking myself and to ‘relax, rest, and take some time to do what I love’. So, for my birthday that year, which is tomorrow, 8/8, we went out of town to the mountains because I love the country. I didn’t know I had CFS, if I had I wouldn’t have gone. I didn’t feel up to it but I was desperate to get better and based on what the doctor has said I thought the fresh air might do me some good. The first picture below was from that trip. I hadn’t looked at it in years until a few days ago and when I look at it now I see things I didn’t see before. I’m leaning on the tree, which is unlike me, and I’m forcing a smile. I was weak and sick, way sicker than I knew, but I thought I’d bounce back like I always did. My strength was put to the test on that trip as I had a terribly scary episode, which included uncontrollable shaking from a sleep state. Nothing I’d ever experienced. It was then I realized I was likely sicker than the doctor had speculated. IMG_1369 2The second picture, which if you’ve been following along, you’ve seen before, was just one month prior on the 4th of July. We were awaiting the fireworks show, which they shoot off from the fair in the background. It’s one of my absolute favorite times of year. I felt on top of the world in that photo and I looked healthier. I don’t know maybe only I can see it, but I see a definite difference. Fourth July 2014Most of us probably have a general idea of when we fell ill, what we were doing, and so many of us regret not having rested more to recover instead of pushing through and making ourselves sicker. Do you remember your onset, was it sudden or gradual? If you feel like sharing, how has chronic illness changed your life?

Not the most uplifting of posts, but life is filled with ups and downs, for all of us. As my mom used to say, “The absolute best thing about feelings is that they are always changing.” Thank you for stopping in for a read. Hoping today finds you as well as possible!🌸  A few more of my little watercolors.

21 thoughts on “Strength, Good People, and Independence…How Has Chronic Illness Changed Your Life

  1. I am an artist too so I like how you always share your artworks at the bottom of your blogs.
    I have done the same after being unwell, gone back and looked at photos of myself and gone woah at the time I didn’t think anything would happen but after looking back at the photos I really don’t look well in the,

    Liked by 1 person

  2. I remember my onset – it was gradual, like a cold that would go away (that was actually glandular fever!), then sudden. So sudden, in fact, that I don’t think I could have done much different. We all try to plow through that horribly confusing, terrifying stage as best we can. I just tell myself that no one says to cancer patients, to MS patients, etc that they would have recovered better if they’d just rested more upon diagnosis.

    I related strongly to each of your points. Being ill certainly does bring out the true character of people around you! I used to consider myself a strong and stubborn person, and I suppose I still am. I couldn’t have coped any other way. Hugs ❤️

    Liked by 1 person

    1. Thank you, Siobhan, for sharing. It’s interesting to me, the onset experiences. And yes, it seems we collectively are the ones to push through. I bet there ends up being a correlation down the road. You are so right people do not say that to people with those illnesses. Great point!

      From what I see here you’re very strong and it’s so true that that strength helps us cope. Hoping today is kind to you and it’s not too chilly! 🌸

      Liked by 1 person

  3. I’m wondering if anyone else feels stronger than ever despite actually being physically weaker than possibly ever? I think that this is when you begin to realize you are indeed a warrior! I think we talked about the birthday thing in common before, not having the same birthday, but having our diagnosis on that day. I certainly hope your birthday today is better. I not only wish you a fantastic birthday, but I also congratulate you for your courage and perseverance to have survived another year! Happy Birthday!

    Liked by 2 people

  4. I’m glad to have met you here in blogland. 🙂
    I was diagnosed with fibro in 1999, but like you, I pushed myself so hard to work full time and be the perfect mother/wife until I finally cracked in 2011. It’s been hell ever since.
    And for the 3rd time today, happy birthday! ❤

    Liked by 1 person

    1. It makes me wonder if there’s a connection between consistently pushing too hard and the body raising the white flag with FM and CFS. So glad to have met you too! I really enjoy your posts, your candor, and your thoughts on life are often straight outta mine. Hoping today is kind to you and AC is in your future!🌸 (we got a portable one at Lowe’s and it keeps my room cool-ish, wasn’t crazy expensive)

      Like

  5. What you said about your illness possibly being from giving too much before the onset reminds me of the book The Giving Tree, by Shel Silverstein, about a tree that gives apples, wood, etc to a human throughout his life, with very bittersweet consequences for the tree.

    Sending well wishes.

    Liked by 1 person

  6. Happy birthday! Thanks for sharing such an honest post and the things you’ve learned. Like you, I feel stronger in some ways now than I did before. It’s funny how that happens, isn’t it? As always, I love your artwork!

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  7. I feel every word of this. Thank you for sharing so openly how this disease has impacted on your life. It’s crazy just how much we have to adjust to get by with this illness. Yet we still do it with a smile! Well most of the time!
    I vividly remember the onset of my ME/CFS. I’d been away on a work conference for a couple of nights in London, and travelled home the Thursday evening by train. Making sure I helped a work colleague who was pregnant with her bags and into a taxi – I mention this as I couldn’t do this now, but it was once second nature! The Friday morning I woke up feeling dreadful with what I at first thought was a really bad cold, then flu and then you can guess the rest!
    The three months prior to that I’d had a terrible experience with wisdom tooth pain, and after much suffering, had it removed on holiday in Thailand! My husband believes this was the start of things. I’m not sure and perhaps it did weaken my immune system, but I vividly remember that virus on that Friday morning – when life as I knew it changed dramatically. Sorry, I didn’t mean to waffle – maybe I need to blog about it!! Happy belated birthday and I hope you managed as nice a day as possible 💖

    Liked by 1 person

    1. You certainly aren’t waffling! I find the onset experiences of others fascinating. I remember a few days in trying to force myself out the door to work. I looked at my SO, fully dressed but completely out of spoons, in tears and said I can’t do it, I feel like when I had pneumonia. It’s hard to imagine the body can become that sick, that fast, but as so many of us know first hand, it can and it does. Oh and stupid wisdom teeth…I mean why are they still a thing?! Hasn’t evolution taught us nothing?😉😁 Thank you for sharing your experiences and for your compassion.🌸

      Liked by 1 person

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