Life after diagnosis. What do you miss the most? Let’s face it … life is different after a fibromyalgia, chronic fatigue, arthritis, cancer, and chronic illness diagnosis. For some, the changes are like hitting a brick wall doing 95 mph on the Autobahn. For others, it’s more like a slow creep of pain, fatigue, and just plain not feeling well. The result is that things aren’t as they were. What do you miss?
I want to generate a supportive conversation here. We all miss different aspects of our former lives. I don’t want to stir up anxiety or frustration about what we can never have again (because I don’t believe in “never” for such things). But what I do want is to share are the unexpected shifts in your expectations. Things you didn’t realize you’d miss until you no longer could do them or participate.
I want to be clear on this point: We are still WHO we were before getting sick. But, we may not be able to do everything we once did.
WHO we are
is not what we do.
I’ve shared this before, but it may surprise you to learn that the one thing I truly miss is the ability to wear cute shoes. I used to wear high heels every day (and I mean every day). I wore them to work, to church, to the store and even for a fun day at Disneyland.
I never thought about carrying diaper bags, books, over-sized purses, groceries and more. It was 2nd nature to wear heels and I loved scouring through the super sale racks at shoe stores for my size. With small feet, finding a good fit was quite a feat!
Before I understood my diagnosis, I tried everything to rid my body of pain and muscle spasms including mattresses, pillows, wraps, gels, (of course, pills), and lower-heeled shoes.
Even though – for the most part – I’ve been able to rid my body of the pain, I still occasionally deal with leg cramps and spasms. If I sear heels at all, it’s a “guaranteed” thing that I’ll be up all night with cramps. It’s simply not worth the price.
Wearing tennis shoes and other flats works fine most of the time, but when dressing up, it’s frustrating to not be able to wear a great pair of darling shoes. I miss that part of putting together an outfit. (No these candy-striped cuties aren’t mine. —>)
And, because I’m short – okay, I’m very short – wearing flat shoes with a dress just makes me look as if I’m standing in a hole.
Have I gotten rid of all of my darling shoes?
Well, most of them … all but a few special pairs. Remember that I don’t believe in “never.” I still plan on being able to wear them sans cramps one day. And, I’m doing all I can to make that happen.
So, that’s my share on “what I miss most.” What about you?
Please jump into the comments below and let this community know what you miss most after your diagnosis
Frankly, I stopped missing what I couldn’t do and found stuff I couldn’t have done without my pain. Leaving a stressful job, writing and then publishing 5 books, helping others in chronic pain, to name just a few of the perks. Yes, I have shoes that I need to give away because I have to wear low heals too. But I feel that it’s a good thing because I’m far more comfortable in flats anyway. I simple wear more comfortable clothes as well. I don’t miss a thing except maybe getting up pain free. That would be a gift I would love to receive. But until then I will not focus on what I don’t have and enJOY my life as it is.
Absolutely love it, Sandy! So happy to see you here 😉
What do I miss? The energy to go shopping! I work full time so at night and on the weekends I’m tired. The last thing I feel like doing is shopping…it just takes too much out of me. I’m not a big shopper…but it would be nice to have a few new bras and socks. LOL 🙂
We hear you, Lori! I was just asking someone else who rarely leaves her home about this issue. For her, she said that her Amazon Prime membership was totally worth it for her. She no longer worries about buing little things and just orders them using Amazon Prime and they arrive in 2 days. They even deliver on Sundays! I’m not much of a shopper either – so perhaps it could be a compromise to go to a mall or a shopping venue and instead of hitting the pavement, hit a nice cafe, have a cup of tea, and people watch 😉
I was just thinking that today. Asking the Lord to take it away. I was wanting to be able to do more, be able to do more exercises, to go places without hurting, tiring our quickly. I know the Lord gave me the energy/ability to take care of my family and homeschool my 2 daughters. Now they are grown and I try to stay busy with housework other activities. I have my morning energy but slow down in the afternoon. But I do miss being able to travel longer distances and vacation longer. But if it brings glory to GOD, then His will be done.
Beautifully put, Vickie! I think that chronic illness has a lot to teach us about ourselves and our relationships with the world. We can’t help but feel fears and anxiety, and then we circle back to His will be done. That’s where we can find the most peace. Again – thanks so much for sharing!
I miss the energy of not being able to shop longer, like I used to. The energy to take longer trips. I was blessed to be able to have the energy to homeschool my 2 daughters, who are now grown. I am fortunate to be able to get some housework done but not like I want too. I miss being able to sleep better, longer at night. But I have my Helper Who gives me strength to make it through the day.
You’re so right, Vickie – and energy is a biggie. We miss doing 13 things at once like we used to — however, many of us started to get ill because we were often doing 13 things at once, right? So glad you’ve shared with us here!
I miss having energy to go hiking, walking for a distance, shopping, anything that takes energy to keep me moving. I used to be a dancer, (only country line dancing; two-step, & the shuffle). That is how I kept my weight off. But now I am in bed for days after a few hours of any kind of dancing. Now it is not even worth it. Don’t get me wrong I am thankful I can walk as much as I can, & work a full time job. Weekends are usually spend at home resting. I missed the energy to have relationships. Loneliness has been hard to handle at times walking this journey of these chronic illnesses, (Fibromyalgia & Chronic Fatigue Syndrome). I tried to keep it simple with low expectations of myself and others. Thanks for letting me share.
And everyone else here can relate, Janet! Thanks so much for sharing your specific story because it serves to support us all!
I miss horse riding, skiing with my husband, travelling, even being able to go and spend time at the markets.
I took up botanic art 7 years ago instead, I write a bit, and I’m now able to walk after lots of rehab. I’m grateful for the epilepsy drugs that help my Fibro.
My husband married a woman who ran her own business, and was very active. But he has been my stalwart and has helped me so much. I’m very blessed.
What I miss most of all is the freedom of mobility freedom to travel, Imhave lost so many abilities, freedom of even being to go for a long walk, not being to make plans. I never know how I will feel from one day to the next.
i have become rather a recluse, I am tired of trying to explain what FMS is.
Because of concentration lapses, I gave up driving, I really miss the freedom of that.
I have gratitude for what I can still do, I have many hobbies and I live alone so how I spend my time, is my business, I no longer have anyone else to consider if I can’t sleep or if I want to stay in bed.
My children Re adults and are very understanding and supportive I have no demands from anyone.
I miss most of all being active and doing high intensity aerobic exercise, gym classes, jogging. I miss being a size 8 and not having to consider everything I eat and how it will effect me. I wish I could feel energetic to enjoy nice time with my kids without the frustration of feeling chronically tired. I miss having a memory!! Fogginess effects me the majority of days.
I found myself really thinking about how I feel rather than what I should feel. Life goes on regardless of my ‘issues’. My memory is the worst. I used to remember medical record numbers (I worked at a major medical center in Minneapolis, MN). Also phone numbers & calendar. In other words, I was organized.
My other considerations of what I’ve lost is that I don’t get things done anymore (house cleaning, errands, etc.).
I have also lost my sense of control. Because I could remember everything, I didn’t think the brain (& body) would just quit on me. I find myself letting things happen rather than being on top of the conversation, situation, or whatever.
Another thing I figured out was lost is choices. Like I said above, I let things happen. I don’t have the ‘mentalness’ of making major decisions, going out with friends, doing housework, and many other things. I do things so it’s convenient for me physically & mentally. I budget my time to accomodate EVERYTHING. I feel lost if I don’t have my work clothes for the next day laid out, time my mornings to allow me down time to conserve energy for the day (I still work full time), and spending quality time with friends & family.
I guess I attribute everything to a saying to explains my conditions (Fibromyalgia is the main one) – the mind is wliling, but the body isn’t able, then you question your mind.
If anyone wants to reply to me individually, I’d love to discuss it beyond this blog. Just respond to my post & we can discuss exchanging email addresses.
What I miss the most…
I do miss my fruit , I have been told I have to lay of citrus fruit, such as apples, peaches, plums, and all that is citrus fruit. I also now have been told that I have to lay of all fatty foods, so what’s left to eat then, get fed up quite easily, This damn illness is not giving me no favour’s … If there is anybody in my position if food tolerance I would like to know.
Thank you very much for your help,
Mrs Shane Ibbitson from Frome Somerset.
I also miss shoes, and clothes that still look good with a tank top instead of a bra. Most of all, I miss being able to take off at a minute’s notice without worrying about whether I have my meds, my pillows, & my retainer.
I miss my brain. I used to be a webmaster at a local television station, plus manage a multimedia company, plus at night, sing torch songs in front of a big band while raising my 2 girls, one with autism (a handful). I took classes in computer languages to keep up with my webmaster job, too. I miss working!
I’ve gotten used to managing my energy levels and chronic pain after 13 years, but I really miss being able to think, plan, solve problems quickly, have a conversation with words flowing easily from brain to mouth instead of hesitating speech, trying to find the words. (embarrassing)
And I miss exercising.
Val – so many of us here might say the same thing! Thanks so much for letting us know how you feel!
I really miss so many things, but I will try to limit it. I used to miss being able to work. I was doing the job of my dreams, and had to leave it, I would be grateful if I could work an hour a week! Now I miss being able to do the simple things like taking a shower, making meals for my family, cleaning, and taking my dog outside (even for a 5 minute walk). I miss having any kind of a social life, but most of all I miss living! I have fibro, pcos, pmdd, gallstones, and now my doctor suspects endometriosis. My mind is almost always a jumble, and no amount of pain medication helps. I want to believe that I have my whole life ahead of me still, but honestly the last 15 years have been brutal, despite all my research and hard work, nothing has helped, it’s been one struggle after another!
Jenn – thanks so much for your honesty and your willingness to share here. I know your thoughts will bless many others. We do stuggle at times and then find that at other times we seem to be doing okay. I’ll pray that the struggles for you are few. Again – thanks for letting us know how you feel!
After 18 months trying to get the right meds in the right dose for RA, I am thankful to say I am once again working and did my a four-mile hike yesterday. Only hiked once last year. However I was an avid quilter and although I have started quilting again, I don’t have the dexterity to machine quilt as I did before and I get very frustrated that I am unable to achive the quality that came so naturally to me before. I am very thankful for this blog and learning that although our symptoms and particulars are different, it is very reassuring to know others are dealing with the same issues.
Jeanne – so glad to hear about all of your successes! We’re all on similar – yet different paths. Hiking sounds amazing to me and I’m so happy to know that you’re moving forward and finding what works for YOU!
I miss a work life, the “socialness” of it all ncluding the rush of planning when and where lunches and happy hours were to happen. Being part of a team or project or dept. I miss the life work afforded me like being able to push myself after work to get to the gym to meet friends. Most of all i miss my desk or cubicle (and all the cute outfits and shoes too) 😉 😉 😉
I miss my old self who was spontaneous, bubbly, hungry for life, and worked hard at everything. Now I can barely get out of bed. I missed out on a lot in life since I got sick back in 2009 and have never been the same since. I miss working. I miss feeling productive. I miss bing respected for my dedication and hard work. I miss knowing what it feels like to be normal. I am 28 and have been told by doctors I won’t make it past 30 years old.
I hate how people ask me what’s wrong with me because 1) it’s exhausting to explain it all and 2) after attempting to share what’s wrong, they say that they hope I feel better soon, as if I have a cold or a little headache that can be taken care of with an aspirin. 3) And then people ask me what I do for living after I tell them my medical issues. My pain is so debilitating I have to be on bedrest most of the year. I am unable to work, I miss working so badly, too! I hate how people say they envy me, telling me that it must be great to not have to work and stay home and watch tv all day. I can’t even watch TV because of the sounds, bright lighting and movement–it makes me unexplainably ill to the core to where I lose myself into this inner tornado of pain, stretching out within me that my skin is the only thing containing my insides.
Healthy normal people will never understand our struggles and I’ve come to realize that, but it infuriates me that they see it as an excuse/benefit to not “have to work” while that is the one thing I dream the most about doing again one day–being able to take care of myself and work and have fun like I used to. I feel like I’m not an adult because I had to move out of my apartment to live with my parents who are my caretakers. I hate that feeling of being a waste of a life and constantly disappointing people when they ask me how I’m feeling everyday and I answer honestly. That is another big thing I miss–not having to lie everyday to others about how I’m feeling.
I miss waking up without the throbbing pain all over my body, feeling like my head will bounce off my pillow. I miss sleeping more than one hour at a time–if I’m lucky. I miss what it feels like to be normal. I miss driving. I miss the cool breeze at the ocean, but the wind hurts my body so badly–I’m hospitalized every time I try to RV camp at the beach with my family like we always have since I was nine years old.
I miss being able to be a good friend. Listening to people’s problems stresses my adrenal glands so badly that my body literally takes on their stress. How can I be a good friend if they need to talk about things I literally cannot handle to hear, much less try to pay attention to, fighting my way to try to socialize and paint the smile on my face by trying to pretend I’m normal, just like them so they treat me like normally–I hate the looks of pity and attention. I can’t stand it when people I know we’ll see me in a wheelchair. The looks, questions and attention is too much for me to handle. It’s so hard to be around people when you’re doing your best to suck it up, not shed a tear and keep a smile on and try to focus so I don’t pass out from my syncope to be there when I try really hard (with help) to spend time with my family and friends.
I miss having family time/dinners every. night, especially when I live in the same house as my most beloveds and support system:my parents, sisters and brother. It sucks that because I can’t handle sounds and lights or even sit at the kitchen table with my family, because that’s always been my favorite time–family time. I am one room away from dining with them (when I can eat solid food), but can’t be there with my loves. I’m so close but so far. These illnesses have stolen all the best things in my life. I try to press on and do my best when I can. Every time I try too hard, I get hospitalized and undergo the worst episodes. I miss being healthy. That’s something everyone takes advantage of until they realize it’s too late, just like me.
I was diagnosed w/ Fibro at age 34 and the best medicine has been switching to Part time work. Being a full time therapist was too draining. Now, 4 yrs later, my doctors worry about RA and lupus as well as fertility issues. What do I miss most? Running. Being physically active. Not worrying about only sleeping 6 hrs. Being able to stay up late and not feeling like death the next day. Travelling with an unlimited amount of energy. I AM different now because of fibro. Maybe Im more grateful for the things I CAN do. Maybe I’m just more aware of how stress and trauma can be deadly.
Stephanie, as you so beautifully pointed out, fibromyalgia and chronic illness has so much to teach us. It’s not like we signed up for these lessons, but they’re taught to us anyway. You sound like you’ve been able to sort through many of them and have done so with grace 😉
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