13 Things I’ve Lost Since Getting Sick

In October, it will be 9 years since that fateful day when the random pains first hit. 9 years since getting sick. 9 years since my entire life (at least as I knew it) would end. 9 years since beginning the most epic battle of my life (and I’d already battled some real doozies, let me tell ya!). And 9 years experience living with Fibromyalgia (and a whole host of other ailments, but who’s counting?)

And 9 years ago, I never thought I could ever find peace within myself again or that I could ever let go of all the turbulent feelings of loss, guilt and desperation that I felt in the beginning. Yet here I sit, in my carefully constructed home bubble, with just that; inner peace. Peace doesn’t mean that I no longer wish things were different or that I’ve stopped hoping that someday they have more effective treatments. It’s just a place that has finally found acceptance with the circumstances with which I now live.

I think one of the ways I’ve arrived here is by taking the crummy things, mourning them as I let go and then finding new ways or things to love. It has not been easy and I still falter. Some things, I just can’t get around how very, very much they suck. But, for as much as chronic illness steals each of our lives, I won’t allow it to destroy me in the end. It cannot win, too.

So, as I look at all the things I’ve lost, here are the top 13 I’ve come up with AND how I’ve gotten past those losses:

  1. Vegetarianism. Adoring animals all my life, being a Vegetarian was always a natural choice for me. I could never handle eating something with a soul……and I still can’t. But two years ago, my Husband Bri vehemently fought me that I needed to eat meat. I was so thin and so sick, I could hardly move. So I conceded. I’m not cured, however, I can move. So as abhorrent as I find eating meat to be, I do it. I only eat meat that is humanely treated and free range. I also apologize before I eat it.
  2. High Heels. I loved shoes! Well, present tense, I still do. But my knees can’t handle them anymore. I recently bought a HOT pair of heels for my Daughter’s Wedding Shower. Two hours in, I was in so much pain, I was having trouble standing. So, I have now found a love for Chuck Taylors. I never had a pair as a kid, but they come in SO many cool colors, even flowered! It’s made needing to always wear sneakers a little more pleasant.
  3. Driving. Did I mention some of these losses REALLY suck? Not being able to drive is one of them. I’ll drive locally, but I don’t like it. I can get sick at the drop of a hat-so beyond it being massively inconvenient if someone has to come bail me out, it can be dangerous if I’m not on a backroad. As much as I hate not driving, I think my Husband is happy it’s somewhat curbed my love of shopping. LOL
  4. Tennis. Bri and I used to play tennis when we were first dating. It’s not that we were ever any good, it was just alot of fun. Once we got married, we used to take the kids to play. Now that the kids are all out of the house, Bri has no one to play with. So, we’ve come to treasure our dog walks.
  5. Independence. Ugh. Last week, I went food shopping on my own. With working overtime and going to college, Bri doesn’t get a ton of down time. So I hate using what little he does have, to do things like food shopping. So I did it, but it didn’t go well at all. I got sick in the store and spent the afternoon recovering. It’s the little things, like that, that drive me crazy about always needing a chaperone. The stuff you never considered, like going to the Doctor, becomes an obstacle in life. Things like not driving and not being independent can really get you down; until my Daughter reminded me last week that she doesn’t mind helping. It gives me more time with the people I love. It does scare the hell out of me to get old though.
  6. Working. I miss feeling accomplished. I miss the sense of satisfaction for a job well done or for the ability to chat with people. I miss being proud of what I do. At the end of my career, I was so sick, it became impossible to do anything but work and the quality of that work was not what I had always aspired to. When my boss kindly agreed to lay me off, I was grateful to have unemployment for a while to transition into being home and unemployed. While there’s still things I miss, my health has now improved enough to no longer be bedbound. That’s due, largely, to the careful little bubble I now live in. That bubble is only possible through my being home and on disability. And while I’m still couchbound about 50% of the time, it’s still a huge improvement.
  7. Travel. It used to be nothing for me to travel alone for work. At the height of my career, it was two or three times a month. We hoped, then, that we would eventually be able to travel for pleasure. Doesn’t everyone? These days, any travel, whatsoever, is a huge challenge for me. I get super sick everywhere we go and end up needing down time to recover; even when we only travel from Massachusetts to Maine. The thing about shorter trips is, I can actually get back up after resting. We hope that eventually, maybe we could get to see Hawaii, but beyond that, we now settle for getting to see the ocean. Let’s face it, any beach is beautiful.
  8. Aspirations. The last set of goals, I can really remember setting, were to be able to get my Volvo SUV and to pay off the mortgage (didn’t hit either of those before I retired). Now, some days it’s as simple as showering or sweeping the floor. It’s not that I’ve given up on life, it’s just that setting goals too far out of reach only reiterates those feelings of worthlessness that bubble right under the surface. So now, I keep it simple. Eat healthy (as often as I can), rest often, blog as I can. While I’m eventually hoping to write a book; it’s simply that: eventually.
  9. Sex. Name something that makes you feel more guilty than not being able to have sex (very often)? I’ve cried 100 times for my poor Husband; we’re still young and were still sort of newlyweds when I got sick. It just shouldn’t be something you’re forced to skip. Thankfully, we communicate, even about the tough stuff. Now, I initiate when I’m not sick or in pain. We’ve learned to try different ways or angles. AND my Doctor prescribed muscle relaxers to help make it less painful. It still isn’t ideal, especially for a guy. But talking, being honest and taking meds has helped remediate some of the biggest challenges.
  10. Spontaneity. Yeah, what was that word? I don’t remember because it no longer exists. These days, we plan everything and pack for it. While I choose to laugh about it and call it a “baby bag”; in all seriousness, we even pack a bag for the grocery store. Big events are carefully timed and planned, like my Daughter’s wedding. While the excitement may be slightly diminished, I’m happy I get to do things, when they’re adequately planned for.
  11. My hair. I cannot get around how very, very badly this one sucks. My hair is nothing remotely like it once was. We originally thought it was the low dose Chemo they tried, but my hair never came back even after we stopped that. My once super thick, really curly hair is now super thin and losing it’s curl. Of all the things I’ve lost or had changed, my hair has hurt the most. It was one of the things that attracted my Husband to me and was always sort of my signature. I can’t change this and nothing I’ve done has been able to improve it. These days, I use sulfate free, healthy products, I don’t towel dry it and I get it cut often. While I hope it doesn’t come to it again, I’ve resorted to wigs before. It is somewhat neat to have the straight hair of a wig.
  12. Money. Ahhhh yes. I cannot say enough how much I miss my salary. Disability is about what I made per week, before getting sick. When I first retired, it was like financially freefalling via somersaults. It’s not that we have ever lived extravagantly; but losing half your household income makes paying the bills quite a challenge. For a while, we thought we’d even lose the house. Thankfully, we were able to eventually adjust and now, I’m just grateful to have Disability.
  13. Eloquence. Oh Lord…….I saved a huge one for last. I actually wrote an entire blog post on “Why Fibro Affects Your Speech”, which you can find here: https://fightingwithfibro.com/2019/01/12/why-fibro-affects-your-speech// I used to pride myself on my ability to speak eloquently and public speaking was part of my every day job. These days, I try to stop myself from even interacting with strangers at the store. I can’t find my words, can’t remember what I was thinking of or worst *of all*, I have some weird glob of words come out of my mouth that I never intended. It’s embarrassing and belittling. As a family, we laugh about it. For me, I think it’s another aspect that I’ll always struggle with, like my hair. Since I can’t find a work around, now I just try to put it out there and talk with other sufferers. At least we know we aren’t alone in that struggle.

Fibro and chronic illness take hold of your life and throw it in a blender. It gets jostled around, chewed up, makes a mess and looks NOTHING like it did before it got pulverized. More often, it results in a liquidy, watered down version of what once was. But for me, there’s only two options:

  1. Let it steal your life
  2. Add some ice and grab a straw to drink what’s left.

Since I’ve always been a bad loser, I choose to drink up the mess I’ve been left with. That’s the control I still get. Just remember, everyone chokes on the lumps 😉

With Love, Stace <3

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

20 thoughts on “13 Things I’ve Lost Since Getting Sick

  1. Dear Stacey, I’ve not commented to you before but have been reading your blog for a while now and decided to put my 2 cents in. I’m 73 and have Fibromyalgia, CFS, PTSD, Osteoarthritis, etc, etc, etc. I was an active, athletic child who loved the outdoors. I was reading English poetry before I even started Kindergarten. I began ballet classes at age 7 and was helping teach younger students by 14. In retrospect I think I had Fibromyalgia when I was dancing but my parents thought it was just “growing pains”. In my freshman year of high school I had a severe case of Mononucleosis resulting in missing school for a month and no physical exercise for another month following. In 1972 I had an emergency bowel resection and almost died. In 1996 I was in an automobile accident with severe whiplash. At that time I was 50 years old, had an excellent career as a Certified Medical Assistant which I loved, was active in the community and my church. After my accident something changed. I felt tired all the time, I ached all over like I had “the flu”. I became severely depressed. I started to do research using my symptoms as a template. I wanted to understand why I was in so much pain and became so easily fatigued. I basically diagnosed myself after being told by my primary care physician that there was nothing wrong with me *physically* and that I should just “get over it”.
    One day I just wore out. I asked to go home because I was in so much pain that I was nauseous. A doctor at the clinic that employed me examined me. She listened to me and confirmed my suspicions. That was 34 years ago. That was the beginning of my journey. There is so much more but I won’t talk of it here in a public forum.
    I said all this to say how much I appreciate the comments from others and your information about this illness. The article about speech difficulties made so much sense to me. I cried! I’m not stupid, or inarticulate. And, I am not alone! Thanks for listening, Stacey. Sorry to be so long winded. Edit this as you see fit. Thank you for being an advocate for us. God bless!

    1. Hi Miss Diva! I didn’t see your name included, but it’s really great to meet you. I would not dream of editing your story, it was a fantastic introduction and the story of how you arrived here. I’m sorry. Your story is heartwrenching and very similar to many readers here. It’s awful it took you so long to get properly diagnosed and that you were made to believe it was all in your head. Those statements are criminal, but common. I hear them all too often and have experienced them a couple of times, myself. I’m sad you lost a career you clearly loved; it’s such an emotional thing to go through. It’s like our lives are taken apart piece by piece, with very little ability to control it.
      I am grateful you found my post about speaking and articulation helpful. You sound quite far from stupid! It’s an awful and very frightening thing to not be able to think or speak clearly. At one point, I was terrified I was developing Dementia. But!! as you said, you are NOT alone!!! While it’s terribly isolating to be in our shoes, there are so, so many of us that wear them. Good Heavens! Can you imagine if we were all in a room trying to have a conversation? The mere thought of that makes me laugh out loud. I have found, like you mentioned, that just knowing I’m not alone with what I suffer has been tremendously helpful. It doesn’t change things, but it makes me feel a little less inferior and a little more normal (whatever that it).
      I want to thank you so much for having the courage to tell your story. I’m so very happy to meet you. Much Love, Stace

      1. Thank you for your kind words of welcome! I see that you answer each post with attention to their details. That’s such an accomplishment in and of itself. I think I’d be really tired. Thank you for making each one of us feel special. I hope you feel our love and gratitude and that it lifts you up as you lift us up. Hugs, Bonnie

      2. Aw, Bonnie, I am incredibly touched. Thank you so very much. Sometimes, if I’m struggling (or even if I’m pacing) it takes me a little bit to respond to everyone and I feel badly. But the way I see it, if someone has the courage to share their story, the very least I can do is respond. Everyone here is so inspiring with all they endure. You’re all incredibly special to me and I’m grateful to have a platform where we can help one another. This illness can be incredibly isolating and depressing, but at least if we have support or a mutual understanding, we don’t feel so alone (in my humble opinion).
        You have absolutely made my day. Thank you. My Readers and I are lucky to have you. I hope you have the “okayest” day possible.
        Much Love, Stace ❤️

  2. Tennis, I’ve not played that since I was in school. Oh how I’d love to have another go! Wouldn’t quite be the same when all you’re capable of doing it sitting on the sidelines. I think no.6 for me was the hardest when I lost my regular job, and I hadn’t realised for a long time just how hard it hit me. Spontaneity, a word lost in our vocabulary for the most part! And I love the last one. I thought you were going to say that you’ve become a hardcore swearer (I have) 😂

    I’m so, so sorry for all these things you’ve lost and more. I wish you hadn’t had to go through any of it, I wish your health were better, I wish I could do something. But I also applaud your honesty in this post. It’s hard to say the negatives sometimes because there’s almost this invisible pressure to be positive all the time or to offer pick-me-ups and advice on blogs. In reality, sharing the hard truths and the painful reality is so incredibly helpful because it raises awareness for those without chronic illness, and helps those with chronic illness to see they’re not alone. I’m quite tempted to do my own version of this on my blog but that would be cheating 😉 Very well written, Stace!

    Let’s clean up the mess, grab a straw and drink whatever we can!

    Caz xx

    1. Hey Caz!! If we all get together to play, we can just sit on the sidelines together. No one will be on the court, we’ll all just be sitting there waiting. LOL.
      I’m sorry about your career, it’s the worst. What did you do? It’s a tough blow to be someone who works hard and is then just sentient. It does a number on your mental health and self worth.
      As for swearing, I guess I should have included that. I’m right there with you! I am totally foul mouthed now. I may not be able to articulate myself correctly, but I never forget any swear words. Those always come out right!
      I say go ahead and run with the topic and write your own version!! It clearly hit a note for you, as it did with others! If you don’t mind, I’d only ask for a pingback or mention 😉
      I try to offer positive advice or helpful lessons I’ve learned through my losses…..that’s why I write. But I never want to glaze over those losses or give floofy, frustrating advice to such a painful journey. Every day ( for all of us) is a huge struggle. And while I try to stay positive and grateful, there are days when I just can’t, when I cry ten times or I swear and throw things. It’s part of the journey. And so I think all that is important too.
      We are not alone. At least in this messy existence, we know that. <3

  3. This brought up a lot of things for me. Just a few:
    1. Meat. Once I read what cattle are fed, I gave up beef altogether (except for mabey once or twice a year for steak on the grill cooked by my friend John. I mean, there are limits to sacrifice.) I rarely ate other meat,or poultry, either. Once I became ill, having meat once in a while, though still not beef, I began to realize that I felt better after eating it. So I started eating more and eventually even added beef back into my diet. I still don’t eat a lot of meat, but I do think I am better when I do.
    5. Independence. I remember saying to my doctor once that I tried really hard to not get sick, avoid people with colds, etc, because if I got sick I’d lose my independence, and since it’s only me, I need that. Then I had to get people to come in to do the shopping and the cleaning and the laundry, and I can barely manage the rare bus ride on my own. Independence gone.
    6. Working. I had what I think of as the best job in the world. I was an adolescent counselor in a group home for teenage girls. Fancy title, poor pay. But it was wonderful. Like belonging to a huge, dysfunctional family. You just wanted to be there. Fun, interesting, and I always felt like I was getting to use my life experiences to help others. Then I got sick.
    8. Aspirations. I guess my goal after the divorce was just to make a life for myself and enjoy it. Now my goal is to get through the day, hoping that it’s not by just lying on the couch being miserable. I rarely plan ahead even for later in the day, and I always tell people to ask me on the day and even then I may have to cancel at the last minute. Takes a long time for people to really understand that, and the reason behind it. They start slowly forgetting about you altogether.
    11. Hair. Most of the meds I’ve taken have had hair loss as a side effect, and even now it is falling out at an alarming rate. I wear it in a high ponytail, because it’s not as noticeable that way, and I only have to put it up every few days. Even a bit messy, it still looks okay.
    12. Money. I’ve never had much and don’t need much to spend it on. The most spending money I’ve had was after the divorce when I was working AND getting alimony. I could go to Barnes and Noble and just buy every book I wanted. Armloads. It was heaven. Now I live below the poverty line. A lot below. But as I said, I don’t need much so it really is irrelevant to my every day life how poor I am. Yay me. LOL
    13. Eloquence. I have always been very good with words. English was MY subject. I am a constant reader. Now,I joke when I say garbage instead of garage, or morning instead of meaning, etc. I always say ‘At least I got the first letter right. Right?.’ I type the wrong words a lot, too, and don’t always catch it when I proofread, and I must proofread or sometimes it turns out to be gibberish. Example: It took me writing this whole thing and looking and looking because maybe just did’t look right and I couldn’t think why. Maybe. Got it now. 🙂

    It’s not the way I hoped my life would go, but I have adapted and adjusted and accepted as best I can. It’s been 22 years since I had to quit my beloved job. I still miss it. You play the hand you’re dealt. Little platitude there. Sorry about that. 🙂

    1. I’m sorry, I think I forgot your name or I’d address you correctly. So, at some point, please remind me 😉
      Wow, I guess the post struck a chord with you. I’m always grateful when I write a post that connects with people. I wish we didn’t have to go through it, but I’m glad it’s pertinent and we can share it.
      And thanks for the platitude. It certainly applies.
      I used to get mad at my Sister when she would always say “it is what it is”. It used to drive me nuts. My theory had always been ‘if it sucks, change it”. Ahhhh yes, 9 years on and as you so eloquently said: adjust, adapt and accept. It’s the only option, right? So it’s a great mantra!
      I’m sorry about the meat eating, the hair, the loss of independence, the poverty, career loss, divorce and struggles with articulation. It’s a wonder you”re sane with all you’ve had to endure! For what its worth, I think you’re a hero!
      You know, the whole “future” subject has been weighing on me heavily, as a Fibro friend of mine is really struggling……I no longer think in future terms. So it’s really interesting you mentioned it as well. I think you just gave me my next Blog Post. With all we live with, the definition of future really changes. It can no longer be an abstract consideration. Now it needs to be today, tomorrow, after my nap or when my meds kick in.
      I really, really appreciate your very thoughtful comments. I’m so grateful the post was pertinent to you and I’m even more grateful you took the time to comment so thoroughly. Your experience only adds to the post. Thank you.

      1. Meant to reply to your reply but fibro. 🙂 My name is Jean, btw. I don’t ever really think of myself as a ‘hero’ (thank you for that), or a ‘warrior’. I am a survivor. That’s all. My motto is, ‘I just have to get through this’. ‘I just have to get through today. Tomorrow will be better, and sometimes, it actually is. I seem to have very fortunately been born with the happy gene, and in spite of bouts of depression, and even clinical depression at one time, I always manage to find a bright side. There is always something good, you just have to let yourself see it. That’s what I think, anyway. Good comes out of everything is another thing I believe. When my husband divorced me, I thought it was very nearly the worst thing I’d ever been through. Son of a gun, it turned out he did me an enormous favor, because I could not see, due to being in the middle of it, how destructive to my soul the relationship was. Good came out of awfulness. Even ill, my life is much, much better now. It’s all in how you look at it, I guess. Attitude.

      2. Hi Jean!!! YAY! It’s nice to be introduced!!!

        I love ALL you just said and I wholeheartedly agree. It isn’t easy to be sick or to go through all we do, but it’s the lot we’ve been handled in life. In my opinion, complaining and whining all the time won’t do anything but further contribute to our suffering. That’s not to say I don’t get frustrated, down, grouchy or cry; it’s just that nothing is solved with that being my constant attitude.
        Like you, I try to truly look at all the positive things in life and all the good things I have to be grateful for. At one point, we were preparing for me to be in a wheelchair.
        Not having that come to fruition, despite my limited status, is a welcome surprise.

        While we certainly do suffer, I always try to think of others who suffer, as well and that it could always be worse. I know that perspective doesn’t work for everyone, but it keeps me grounded.
        I think it’s a very personal thing to determine how we get through things…..but I’ll always maintain that acceptance and gratitude help.
        I’m glad your divorce turned out to be a good thing. Mine too. 😉
        As always, Jean, it’s great to hear from you. Thanks for reading and commenting <3

  4. Oh Stacy……It will be 10 years in October that I was diagnosed. I was one of the lucky ones, diagnosed quite soon after the pains started, because it started with a frozen shoulder which was a comp claim from being a medical transcriptionist for 32 years (I figured my shoulder would just get better on it’s own and let it go wayyyy tooo long).

    If my husband suggests a trip, my initial reaction is no! Because where were travel does not have an adjustable memory foam mattress and I always wake up in bad pain! So I avoid travel as much as I can.

    I do pretty well so I’m not complaining. But the sex thing. Oh dear Lord…..I was diagnosed with vulvodynia in my early 40s. I have to use lidocaine gel and take 1.5 pain pills and a gabapentin to make it bearable. Shhhh don’t tell my doctor I take 1.5 pain pills. Actually she wouldn’t care. I am way responsible with my narcotic med and had been for over 20 years which is why I am lucky enough to get 3 a day, but rarely use all 3.

    This weekend my granddaughters, ages 11 and 5, were over for the afternoon and we, spur of the moment, decided to drag out the fairy garden supplies and refresh last year and make new ones. I could not find my back brace and my back was hurting so bad, even with a scheduled pain pill. I was able to participate and enjoy them, but dang my back was bad. PS I started my core strengthening yesterday because it really does help and I have been neglectful. I HAVE to do this routine. I don’t have a choice anymore.

    My hair is embarrassingly thin and I had a wig but I gave it to my oldest daughter’s BFF who has alopecia, but she is not embarrassed anymore and wears a beanie most of the time. I may get another at some point.

    I need to send your blog to my poor almost 3 year older sis who has been misdiagnosed and has even been to Johns Hopkins and is having a terrible time. I diagnosed her with fibromyalgia not long after her illness started, but for some odd reason she was misdiagnosed with rheumatoid arthritis by 5 different doctors! They put her on biologics which really made her sick. Poor thing can’t handle gabapentin and right now is being maintained on prednisone at a low dose.

    She is so much worse than me, I feel so bad for her…..and for all of us…..this is not what I expected my retirement to look like. Oh and my social security disability was denied, even after I was approved back after my diagnosis and decided to say thank you but I’m going to try working again (after amitriptyline and gabapentin were prescribed). I managed 4 more years until the age of 58, only have 2011 the only year I did not earn income since the age of 18. Grrrr…..I’m doing my appeal as my attorney died. Seriously.

    Time to get my day started and try to accomplish a few things.

    1. Hi Cheryl!! Thanks for commenting! A fairy garden sounds awesome! What a fun thing to do with your Granddaughters! It’s a shame we have to pay such a high price for doing normal things…….I just wound up on the couch for the last day and a half after looking at an apartment with my Daughter the other day. Ugh.
      Why did you lose your Disability? Oh no!! That’s terrible. The thought of that terrifies me.
      I’m so sorry about your Sister. I was initially diagnosed with Lupus and then RA. I did low dose Methotrexate and like her, I was sick as anything. I did see some improvement with every other day Prednisone, but it didn’t last long and I was concerned about the long term ramifications of taking it. I hate that we’re given terrible choices to choose from.
      I would love to have your Sister, if you send her our way. One of the things I’m most grateful for is that I have so many incredible readers that comment and add their stories to my own. By people sharing what they live with it makes it less isolating for all of us.
      The exercise battle is a tough one. I try to make sure I walk the dogs every day that weather permits, but it’s a huge battle. It’s tough to do physical things when you’re in a ton of pain or on the verge of throwing up all the time. Like you, though, it’s something I have to do. Quite a while ago, an Orthopedic Surgeon I saw really instilled how important moving and exercise is, even when we feel awful. And he was totally right. The more I sit or lay, the more pain and stiffness I end up with.
      Despite the initial wrong diagnoses, like you, I was diagnosed quickly with Fibro. The illness, itself, is bad enough, but battling to even get that diagnosis is so unfair. And you’re right, sometimes we can diagnose ourselves better than the Doctors can. Not necessarily because they’re incompetent, but because they don’t live with what we do.
      I’ll say another prayer for your Sister and cross my fingers about your Disability. Sending you both much love <3

  5. Oh Stacey! I can see your ability in your posts that you will one day write a book! You are a gifted writer! I love your “blender” analogy! It explains life with FM perfectly! It’s been 24 years + and I’m still believing in recovery.
    I needed your post today. As I’ve had a sucky week. Thanks for your story and positivity!❤️

    1. Awwww, Lynn, thank you SO much! What a compliment <3 I hope so. I'm not necessarily hoping for a Best Seller, but it would be nice if I could get it out there and sell a few and help someone in our circumstances, just a little. It's one of the only things that will make all this illness worthwhile.
      I'm sorry you're having a bad week! Yuck. Sometimes we just can't get out from under things.
      I think it's great you still believe in recovery! Maybe you're right and we'll all eventually recover. 😉
      Hang in there, kiddo. I'm sending positive energy your way. <3

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