It's amazing, and sometimes depressing, to take inventory of what I've lost since my diagnoses: fulfilling sleep, energy, life without pain or inflammation.
But what I miss the most is my music.
I've played piano for seventeen years, and cello for almost fourteen. I can also play harpsichord, virginal, violin, and viola.
Or ... I COULD, once upon a time. I haven't been able to seriously touch an instrument in several years, thanks to extreme pain, inflammation, weakness, and nerve problems in my hands and arms whenever I played.
Music was an escape for me, practically a DIY therapy. I can't begin to describe how much I miss it.
Anyone else? What do you miss most? How have you coped or accommodated? Any other musicians out there who could maybe shed some light on my in inabilities and how to counteract them?
Gracie, I don't have musical talents but I do understand. In the five years my health has been declining I've lost my creativity skills. Due to my neck, upper back, arms & hands, I miss sewing, cross stitching, and any craft where I had to look down, or use my fingers to hold pins and needles.
I use to sew clothes and costumes and crafts like pot holders and curtains or baby doll items. It was my favorite activity. I sewed fully lined wool peacoats for my daughter's, all my maternity dresses, suits & girls dresses, baby quilts, etc. I even sewed aprons from my grandmother's antique patterns. I helped my daughter with Halloween costumes last year, and sewed 2 fancy aprons (without a pattern) with piping and multiple pockets for my granddaughter's. It nearly killed my neck and hands. After that I said no more sewing.
I've given up cross-stitching (counted, not printed patterns) because of holding the needle cramps my hands and hurts my eyes. I gave up painting (by number... Not that skilled! Lol), and ceramics for the same reason.
I gave up working in the yard, gardening and preserving our crops. I loved making jams, preserves, jellies, pickles, and green beans & tomatoes. I can't lift the equipment nor handle the hot jars. I've also given up baking cakes because I can't lift the mixer or the bowls, nor decorate the cakes. I can't even play playdoh or legos with my grandchildren anymore.
My hubby cooked blueberry pancakes for them Sunday morning, which we always top with blueberry syrup, strawberries & whip topping. I couldn't squeeze the end to make the cream come out and thought the can was defective. My granddaughter picked it up and used it just fine. That means I'm losing even more strength in my hands.
My hubby and I use to walk the beaches, or go hiking in national parks, or go antique browsing, but I can no longer do the walks. I can't even walk through Kroger of Walmart anymore. I can't walk through the neighborhood with the dog & my hubby. I can't swim due to sensitivity to the cold or hot waters. And driving is out now because of my tremors, my hubby drives 95%. I also have a hard time riding or sitting longer than an hour, so traveling to visit family or friends has also declined. I pick my trips very carefully now, avoiding what I can & choosing he most important to do.
I feel like my multiple issues have stolen all my past enjoyable, relaxing activities. And I really haven't found a way to work around it or through it, or find new things that are less stressing to my body. I do try to exercise, which I never did before. Lol, I didn't need it then! I can tell I have more energy exercising, but I'm still weak as a baby, even after 2 months. I'd say my low back is the issue walking long periods, and the imbalance of course. I'm reading more, when I can concentrate. And for short periods I do genealogy research. But using my hands for minute details is out of the question. I've even begun to have problems using my tablet, so now I'm back in CTS splints. My Arthritis is also a factor.
I wish I could do more, but I'll take what I've got and be happy about it. I feel blessed for having the ability to dress and groom myself still, and to cook minimally. I'm grateful I can still walk at all. I'm thankful I can still read, reason, and think for myself, in spite of the dementia and fibro fog. My daughter says I've become forgetful and disorganized most. But I'm thankful I still remember to put on my undergarments instead of my hubby's! 😉 Lol 🙏🌼
And most recently I've noticed it causes tremendous pain to my neck and head, just from tipping my head back to put drops in my eyes. I'm now having to lay down on the bed or recline my chair. I hope Mayo finds out something from the EMG they're going to do, especially regarding my weaknesses. 🙏🌼
Gracie, I would have to say the thing I miss most is my horses. I was always at the barn, mucking stalls, grooming, bathing, riding, etc.. They are such a part of my soul. I do go visit my best friend and groom her horses and just being around them, touching them, breathing the horse scent all transports me to such a place of peace I rarely feel anything but my connection with the animal and my friend's conversation. I would love to own another one. I lost my girl in 2002 and she was young.. Only 19. I was blessed to have her for 10 years and she gave me many wonderful rides (and tossed a few people off!! LOL), and I lost my old guy who was living up on my best friend's farm 3 years ago and he was almost 40!! I hope to have another one some day, even if I don't get to swing a leg over him, just loving and grooming and bathing him and giving him carrots and treats will be good enough for me (maybe😜). Perhaps I need to come back to Earth now and just be happy that I can go to my friend's farm or the local stable where I've know the owner over 35 years and just be with them. I mean it really is the more realistic thing to do.. Then again, I've always marched to my own drum and, who knows
Hi FlappysLady ... as hard as it is to read everything you've given up, it's nice to know that I'm not the only one missing things. Chronic illness feels so isolating sometimes. My mother is a seamstress; I can't imagine how much she'd miss being able to sew clothes and costumes, and by extension, I can't imagine how you must miss it. What keeps you going, if you don't mind my asking, in the face of so much loss?
Hey, Alwayzinpain, thanks for your reply. I've always loved horses for their beauty from a distance, but I'll admit they make me nervous up close. They're so big! I can tell how passionate you are about them, though. My heart grieves for you; at the same time, I really admire your positive attitude and how you've shifted your perspective to accommodate. I hope I can get there someday.
Gracie, I miss art and music both. I'm recently back to playing piano, which is a big step. DMSO, among other meds has helped my endurance. There is still a slight pain, but the music helps me feel happier so it's worth it.
So, I had a counselor recently ask me "what do you do for you?" And it killed me that I couldn't think of one thing I do just bc I like doing it. I've felt like I've been reduced to everything that just has to get done. I am grateful that I am still able (most weeks) to slowly but surely get chores done around the house, but I miss... hmm, I miss spending time with my friends for hours on end. Going to EatNPark late into the night with them and talking and laughing for hours and hours. I've always loved music, as well. I'm a musical theatre nerd, and whether or not I could actually hit the notes, I used to spend hours listening and belting out songs from musicals. It's weird that physically, besides slight asthma, there's no reason that I shouldn't be able to still sing. I think the pain in my body just sort of stole the song out of me. Like Ursula, the sea witch, my voice goes away for weeks. But I'm holding on to the few good days that I still am fortunate enough to get. The days where there's the tiniest bounce still in my step, and a song in my chest. On the bad days, I can still listen to my soundtracks or watch a Disney movie. I still miss the time with my friends, though. But, I won't give up.
Hi kittypain, thanks for joining the conversation. I've been over that "What do you do for you?" question before, too. These days, my response is usually "nap" or "a long hot shower." So nice to meet a fellow music theater buff. My favorite musicals are "Les Miserables" and "Jekyll and Hyde," hands down.
And I know what you mean about singing. It's like I don't have the energy, or my inflammation constricts my lung capacity, or something. But I'm really glad that you seem to still be upbeat.
Incidentally, despite the pain in your words, your line that "The pain in my body just sort of stole the song out of me" gave me goosebumps because it was so beautifully and thoughtfully expressed. Creativity and loveliness shine through despite the setbacks and obstacles and limitations. It's incredible to see.
Words have always been my gift (and curse) lol. My mom, who also suffers from fibro and is also a beautiful piano player, has said I give the pain powerful pictures with my words. Sometimes that just makes it more depressing, though.
My favorite musical is Phantom of the Opera and I JUST recently discovered it has a sequel (that never made it to Broadway) called Love Never Dies, and I've become slightly obsessed. Lol. Andrew Lloyd Webber... his music takes me out of my body it's so gorgeous!
I miss running and exercising so much. I was in the middle of training to run my first full marathon (a dream of mine) when i was diagnosed with rheumatoid arthritis. I tried to keep training but eventually had to stop because of the pain. Ever since then ive had some good months here and there where i start to run again but it never lasts...being able to keep up with it. And now that my meds are doing amazing and im in a place where i actually could physically start again, I'm having trouble mentally and emotionally. For years i cried for having running taken away from me and now i can't pull my head out of my ass!! I miss the person I used to be which was very far from the emotional wreck I am now. Even after almost 7 years of this shit i still feel like I dont know myself at all. I know this doesn't help you overcome your inability(btw im super jealous; i love string instruments particularly the cello) to play but im hoping just knowing other people feel the same helps.
I both hate and love hearing from all of you. Meaning, i would never wish this upon anyone and im truly sad for your loss, but i feel constantly alone because most people dont know what its like to live in a broken body. It's nice to know someone understands.
Hi Linda, thanks for joining in. I can absolutely relate ... suddenly all the dreams I had have to be rearranged or changed to accommodate my limitations, and now just dreaming seems to require so much effort.
Gracie, thanks so much!! You WILL get there. I know you will and do you know why?? Because you have no choice. It's ok, it's hard and still hard for me today even after 22 years. I do love horses so.. They are majestic and powerful and breathtakingly beautiful (and yes, they're big😊). There's nothing that brings me more piece. I go on Pinterest and look at them all the time. Getting back to you, you just need to adjust your activities to hoe you're feeling that particular day. I know it's easier said than done. It's hard actually, not knowing how you'll feel, etc. Hang here with us and you'll be just fine. I'm a mere keystroke away. 💕🙏🏻🌻
Thank you Gracie. I've never really thought about what I've given up until you asked. I had to reread my entry, and it sounds like a lot, like everything. But it's not. You asked what keeps me going, so I'll try to answer. First & foremost, God keeps me going. I once wanted to take my life, but He pulled me up from the abyss and helped me find myself, who I was and am in Him, and rebuild my life. He owes me nothing, but I owe Him everything.
This may sound crazy, but years ago, while raising my daughters and when many health issues started, I prayed constantly asking God to allow me to live long enough to see my girls raised and on their own. He has answered that prayer beyond measure. I tell you this because at times I think my life may end earlier than my older siblings. Our mother died at 65, 11 years older than I am now. Her mom died at 71. Everyone else lived into their 80-90s. My mom and grandmother had many of the symptoms I do, but they didn't go to doctors so they just thought it was all arthritis. It weighs on my mind if my life will be cut short too, but if it is then I still feel I've had a full & blessed life.
My health could be so much worse. There are so many others, even on here, that I feel have so much worse debilitating diagnoses. When I became so sick in 2010 and continued to get worse I was angry, a normal human reaction. Slowly over the past 4 years, I've realized my life and health is right where God wants me to be. My granddaughter needs me, because I'm the only one who talks to her about God and His love for us all. So in essence, she is what keeps me going. And my daughter's still rely a lot on what guidance I can give them. My hubby who has been devoted to me through it all, even when we get on each other's nerves, he still needs me. My dad still needs me. They don't need my physical healthy body. They need my heart and mind.
My life will end when, and only when Good days so. I've accepted that, for reasons I don't understand or questions I cannot answer, my health is aging me faster than most my age. I look and feel old. Old people hurt, and I accept my pain as part of God's plan. When I was healthy I made a lot of money, and my hubby and I were living the good life, splurging on unnecessary vacations 2-3 times a year, fancy clothes, etc. But we forgot one thing... Compassion for others. In humility and humbleness it took the loss of health, money, & splurging, to realize what IS important in life. It's not the things I can do, it's who I am on the inside, who I am towards others.
I hope this answers your question. It seems copy but I'm a little tired tonight. Wishing everyone a very peaceful and blessed sleep tonight! 🙏🌼
It seems like a lot of you once had healthy lives. I'm not mad bc I suppose that that makes having everything taken away like that so much more dramatic. But I've basically been sickly my whole life, yet even in the last year, since my fibro diagnosis I've seen my body and brain disintegrate. I spent most of my childhood and teen years curled up on the couch or in bed reading books. I was just starting to feel almost like a "normal" person when I got married last year, but then came the diagnosis.
You know what my husband told me? He said, "I knew when we stood in front of everyone and said in sickness or in health, that there would be more sickness than health. I'm not scared." I seriously am blessed by God that when I would have probably given up, he sent me Eddie. I still went thru grief over the life I wanted, but if I have Eddie and God sticking with me then I can't give up yet, can i?
Wow, Flappsy, that was so beautifully stated and so true. I have found my purpose as well and feel that it is just as you said. Humility, compassion, empathy. I always had them but am sure there were things I took for granted. I also had a good life, good job, money, horses, new cars every few years (I isually had it paid off early and didn't have more than 20k miles on it) Oh, and screw the clothes, I was with horses and even though I worked in corporate America, I was lucky enough to work for a boss who was a 60's hippie love person and wore jeans, sneakers and t-shirts or tank tops to work. Didn't matter I have tattoos all over me and didn't matter that I wasn't "dressed up" I worked hard and made good money and brought in many clients. Now, I have no money, live home with my folks, no horses and many diseases I could do without. I'm sure there's a reason and only God knows what that is. I have had times where I wished my life would end and I would suffer no more. I love my family and have 10 nieces and nephews that range from 30 all the way down to 7 years old. They all love their aunt and understand there are things I can't do any more. I have my folks that I help out as much as I can and my Godfather across the street who is 98 and struggling for every breath he takes. Who am I to complain? I have said many times that I love to be here with all of you. Helping others feel better, offering a listening ear or a shoulder to cry on. (Even sometimes giving y'all a chuckle for the day). We are all in this life together and we will make it through this life the same way, together. I hope you all have a blessed day and a lighter pain load. 💕🌻🙏🏻
Thank you AlwayZ. I agree we're all in this together. And Kittypain, you are blessed by your hubby. Many spouses can't handle it. Your being sick (and all like you) all your life is exactly why I have no room to complain. You are an inspiration to me, and all who have dealt with lifetime illnesses.
Yes I do miss things I use to enjoy, hobbies especially because I felt more useful. But what I was or am able to physically do does not make me who I am. I also have asthma and it has changed my ability to sing, especially carrying a tune. My voice cracks and squeaks in between notes now. Of course it could be partially due to the sjogrens and real dry throat it causes.
Here's hoping and praying everyone has a very good day! 🙏🌼
So appreciate the discussion that has sprung up here. I have to say that I'm envious. I still feel like there's so much I can't do.
I just had an argument with my significant other, who has taken to asking me, "What can you do to better yourself?" I haven't responded well, I'm afraid; I spend so much time discovering new things I CAN'T do that I feel hopeless. Really, what can I do to better myself? Just makes me feel like there's nothing because I can't even get out of bed five or of seven days lately.
Aww, Gracie, my heart breaks for you! I think a better question (and one I've had to ask myself a LOT lately) is "what do you do for YOU?" I know I was in a place where it's like, everything I did was something that I HAD to do. I'm still trying to figure out exactly what I can do for me, and honestly it varies based on how I feel that day. But I would really encourage you, especially while you're adjusting to the new meds, find at least ONE thing that you can do for yourself every day. Smile, laugh, and know you have value whether or not you can "better yourself everyday." Go easy on yourself, you're doing the best you can.
Hi kittypain, you're so kind to respond so quickly. That question, what can I do for me, is one that someone asked me a long time ago, when I was first diagnosed. I had forgotten it, but when you said it in your post, I remembered the feeling of relief I had when I first heard it. It was like ... reframing, almost, so that I felt like maybe I could do SOMETHING. I think somewhere I started a list of a few things I could do for me. I'm going to try to find it. Thank you, so much, for reminding me!!
When the discussion first started I read responses but it took me awhile to say anything myself. . I got those 2 sentences out and no sooner did I hit add reply I started balling .. that ended up being the rest of my day. It's a really hard thing for me to think about all that I've lost, had to change and all of those things I planned but will never get to do...
I used to think about it every single day and it only fueled my anger about the whole pain thing and not knowing or understanding why any of it was happening to me .. making everything worse and when I finally found out what was wrong 6 years later I realized I had better just let it all go because none of it was ever going to be possible .. After I started treatment I thought .. im going to get better now so I started taking piano lessons ...i figured out pretty quick that wasn't going to work because it kept causing hand and shoulder flares ... broke my heart and gave up on all those dreams .. well thought I had but this all made me realize I really haven't .. I guess I've just been ignoring it.
I waited because I was raising a family and I thought that was more important than me... i was just as important and I could have squeezed some of them in and still have done everything I did for my kids and I think I will always be angry at myself for waiting but I can't change the past no matter how much I'd like to.
Gracie I am completely with you ... up until the last few months on a new treatment I've spent the majority of the last 7+ years in bed because of the pain.. it can make you feel crazy and I went through a period of severe depression because of it. Shortly after I was dxd with Rheumatoid arthritis/fibro 5 yrs I tried to find something I could do in bed since it was likely I would be spending a lot of my time there since it wasn't curable .. something that would make me feel like my life wasn't wasting away and would hopefully lift my spirits. . I started making jewelry. I could stop and start as I needed, found ways not to make my hands suffer for it and best of all it didn't take months of a repetitive motion (like crocheting) to produce something wearable. I still have to becareful not to over do it but it really helped me get through a lot and kitty is so right.. you have to find something for you! I hope you find something that makes you happy even when you have to be stuck in bed.
Linda0000, thank you, truly, for your openness. I'm indebted to you and the others here for being willing to share, even when I know it leaves us all vulnerable. I've wondered about jewelery-making before, and I appreciate your suggestion and personal story. :) I'll give that a try. Please, keep in touch.
Hi I used to play the piano but got off that I used to color only a little . I’m more into Sing in the church choir and make prayer cards for everyone where I live and all around... btw I Shore hug to all I have Siatica nerve pain but got relief from back injection right dude yesterday afternoon. Some anyways .. I hope that you all have a nice day hug Shore ❤️❤️🙏🙏🌈🌈💕
I’ve lost so much I used to do. Like FlappysLady I’m a pretty crafty woman doing; painting, ( my mom also painted.) loved to do ceramics gave so much of it away,got more joy seeing the joy on other’s faces. Crewel work, made clothing when younger. Crocheted, doilies, dolls, afghans, potholders galore, runners, quilts. Gave many away. ( by the way they really are not cheap to make.. used to like to )bed quits wheelchair quilt, etc. I used to like to play classical music on my piano. Have my piano still but to painful to play. Sounds rough now . Used to love doing outdoor activities with my family. Rarely go to games anymore. Loved just loved riding a bicycle can’t do it without a recumbent bike $$$!Have Had to drastically cut into our anti quing now. Big flea markets out of the question. After this last illness not sure I can do that at all now. So ya has drastically affected my social etc life.Use to can 2 bushels of each vegetable including growing them. No more. My husband grew up on a farm and that was expected of his wife along with baking/cooking a large Sunday dinner ontop of it. Homemade bread every Sunday and whenever it run out. Oh well guess I wore my body down along with assisted my husband in all our renovation. No not just holding the sheet of drywall but also installing it etc. I just miss being useful! Sorry for the rant. Gave up so much but in reality gave so much as well.