Life with Chronic Illness
When it starts, I know because my hands stop working. I drop things, have trouble gripping objects correctly, and find that tasks like typing become challenging. It's as if my hands are absolutely drunk. If I start to lose my vision, I know I'm all in; I'm flaring up again.
Although so much of my life is impacted by chronic illness, it's a topic I tend not to address much. Unless I'm having a flare up, and feel the need to notify you because I'll have to break a commitment, chances are I've never told you that I have MS or Fibromyalgia.
When I saw the writing prompts in the Weekend Experiences community for this week, I danced around writing about the weekends I've spent in bed. They are certainly numerous. It feels too depressing, too vulnerable to talk about though.
I don't want to make people depressed! Then I think on all of the times that I've read about other people's circumstances and felt less alone in the world. How other moms venting made me realize there was nothing wrong with me, or how other people talking about panic attacks helped me identify what I was experiencing...
Sometimes it's important to talk about the not so cool things, so here goes.
I took this photo in Wisconsin last year, while visiting a dear friend who also lives with an autoimmune disease. It's wonderful to have pals who understand the things you are experiencing. With chronic illness, it is often hard to connect with the people in your life.
How do you explain that all of your thoughts are foggy? That you wanted to get something done, but someone called you and now you don't have the energy. Or that you really did want to attend an event, but you woke up feeling like your entire body was bruised?
When you have an autoimmune disease, you're not just dealing with a body that won't work correctly. You're humbled in an additional way, people will tend to think you're a jerk/ don't care/ lazy if they don't understand what you're going through.
When I saw this graffiti, it resonated with the part of me that feels entirely defeated by all this.
There's no benefit in sulking over the hand you've been dealt though. The same friend I mentioned above made me realize that adjusting to fluctuating capabilities doesn't have to be all misery. I have a habit of pushing myself too hard, trying to do what I used to be able to before. With some wise words from a friend, I realized that I needed to enjoy the act of slowing down.
Over the last year I've made a lot of strides towards this. Coloring, journaling, reading, taking a dang nap when I need to... Being kind to myself and accepting my limitations is an ongoing struggle, but these are the things that keep me out of bed. When I flare up, sometimes I can't get out of bed for days, so it's an important thing for me to work on.
I took this photo after some hospital visit or another. The glare that I caught looks like the moon to me... I remember having a profound moment of acceptance right then, and wanted to capture it.
When I flare up, I often just wait it out at home. Most times, I sleep for 12+ hours. Part of this is the extreme fatigue, but it's also because I can't do much else. My eyesight will often get so bad, that I can't stand to watch TV or look at screens of any sort. I'll lay in my dark bedroom and listen to music or sleep, and know that I'll be normal again in a few days.
My last flare up kept me in bed the entire weekend, plus the first half of the following week. Through illness, I've developed more patience and a better understanding of myself. I've also discovered a renewed desire to spread joy, as it seems to be the most effective medicine.
Not everything with chronic illness is depressing. I brainstorm when I can't do anything else, and have come up with a fair few fiction stories that way. I've developed a slew of self-care habits that make my life better. I've become more in tune with my body.
Being humbled by physical limitations has fueled my spiritual growth as well. Staying present in gratitude and focusing on the beautiful things in life is one of the best pain killers for me. When I tap into being connected with the earth around me, and the people in my life, I find bliss.
Battling an autoimmune disease has also led to me becoming a better cook, so I can nurture my body in the most fundamental ways.
This is my take on the popular quick service restaurant chain Chipotle's burrito bowl. It's nothing fancy, but it's a veggie packed meal with some immune boosting ingredients. I take a few hours each week to prep stuff ahead of time to make simple but healthy meals like this.
Lastly, I write to fight against physical and mental pain. Finding Hive has been huge for me over the last year-ish, as it's given me a place to set my thoughts down and connect with awesome people around the globe. All of these things help to keep me well.
So yes, I may have spent a lot of weekends in bed, but I've taken a lot away from that. I'll continue to be kind to myself by practicing good habits, and when all else fails, I'll do my best to be positive.
This is my response to the Weekend Engagement writing topics for this week. I hope everyone is having a fantastic weekend!
I'd never have suspected you were living with any kind of illness. You always seem so positive, energetic and lively. I'm sure that if I was coping with such a thing I'd be a real moan bag.
It really means a lot to read that, and to know you think of me in such a lovely way! 💚 🤗
Thank you so much for that!!
Hmmm! The positive energy you have even when going through a lot is divinely. May d Lord be with you always🙏
Thank you, I appreciate your kindness 🤗
You are welcome
This is so inspiring to read, I want you to know that you are not alone and the fact that you see the good in your situation is something admirable.
Keep holding on.. Sending you Love and light my friend.
Thank you for this wonderful comment Amie! 💚 Big hugs your way!
It's a pleasure reading you.
My sweet friend, Gee. I couldn't ever imagine how it must be like for you. But do you know what I admire...you resilience and your growth in these times. You've learnt to love, be patient and understand you even more better and that's what counts.
All my love to you, sweetie. I'm always here if you need to talk.💜
Shucks Tessa, you're such a sweet soul 😍 I really appreciate your kind words and friendship 💚 !LUV
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It must be a lot to hold in, Grin. The pain, the inability to be understood, and all. I get you. It is just like a baby who can't speak yet but more like an adult baby who has a lot to do but can not work. It is frustrating, I know.
However, I am glad you met someone who understands you, and now, you are working on yourself, your mood, and all. Some things in life just can't be explained or fought with. We just have to understand and find our way through it all.
This is why I smiled with tears glistened eyes when I saw this;
I am proud of you, my Grinnest Grin. Keep the joy alive in your heart. You are super strong and beautiful 😍.
The baby analogy is a good one... I imagine babies get really frustrated when they are trying to do something, but lack the motor skills... it really does feel a lot like that sometimes.
Making so many friends here has for sure helped me to feel more understood and supported. Thanks for being one of the people who is always sending me love 💚
I really appreciate you! 🤗 !LUV
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I am glad you found those gems. I hope their light continues brightening your heart.... I ought to do it, Grin. Stay safe
You are such a lovely and giving soul. Your resilience is admirable and crazy encouraging. I will rid off the excuses and get done what needs to be done with the most positive outlook I can summon. Thank you💕✨🫂
Shucks, that made me smile! 💚 Thank you so much for sharing your motivation and light with me 🤗 !LUV
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STOPArrrrhhh!!! I have Fibromyalgia too, so your post stood out to me. AND I am currently in a flare. It really is so isolating and difficult. I almost never talk about it because people really do not understand - but then when I see people like you talking about it, it makes me feel less alien lol. So thank you!! <3 <3 <3
Oh gosh, I'm so sorry to hear that you're flaring right now! I hope it goes quick for you, and you're back to "normal" (whatever THAT is for people like us lol) soon!!
The isolation can be as bad as the disease itself in my experience... it sucks so so so bad to have this huge factor in your life that doesn't make much sense to most people! I'm really glad you found my post, and it was able to make you feel less alone.
I felt really vulnerable posting this, but now I'm so glad I did. Thank you for this beautiful comment! Sending ya a big virtual hug! 🤗💚
😭😍 Sending ya a big virtual hug too! I hope one day we will be free of this. It really is daunting to talk about but it helps xxx
You've given yourself the antidote to your illness. That positive mindset of yours has generated a happy living style for you, which to me is captivating. You are indeed awesome. Keep the vibes of positive thinking alive, and the oil will never run dry. One love.
Gosh, thanks for the amazing comment! 💚 I think perspective is incredibly powerful too, mind over matter! (most times haha)
I appreciate your kind words, Cheers to you! 🤗
You are highly welcome. One love.
Thanks for offering this very interesting, fresh perspective on how you handle something that can otherwise be - to put in the frankest terms - bleak. You've found ways to channel the turbulent times of your illness into something that's not only productive, but also conducive to your own physical and mental health. I like reading this type of content because it reminds of the inner resiliency that's present within us, and that we truly do have to ability to find ways to thrive in difficult circumstances. You've offered an exemplary description of just how it can be done. 😊
I think that @spoonies would appreciate seeing this post!
It's always good to see someone living their best life however they can.
Cheers to that! Thanks for stopping by to check out my write-up 🤗
Wowza, thank you so much @freecompliments! Your comment makes me feel really seen and way cool! Although perspective isn't fool proof, I think it has a ton of power over how our life goes. The best thing I can do is to stack the variables the best way for me, and smile if they topple over haha!
It makes me really happy that you found value in me sharing my journey, I appreciate you taking the time to leave this heartfelt comment! 💚🤗
It was definitely a very informative and genuine post, and I do believe that people of different backgrounds can find different types of value in your approach and perspective! That's what made it such a great post. Appreciate it. 😊
And should you ever need additional help, we in the FreeCompliments Community are always happy to listen and help. It's part of our ongoing mental health initiative, and every additional bit of experience helps us strengthen it.
This is absolutely necessary from time to time 💯
A positive approach is best. Accepting our limitations for whatever reason, and living fully in spite of them is the best thing we can do. I send you a big hug.🤗
You totally said it! We can't change our shakes, but we can decide how to mange them!
Thanks for visiting me, it's always awesome to hear from you 🤗 Hugs your way as well 💚
I am so so so proud of you little one!!!
HUGE HUGS! and so so much LOVE!
Thank goodness for patient friends who tell it to you straight- when you listen, sometimes you learn important things 🤗 hehe
Big Hugs right back at ya, flipping love you!!
💗
Oh my dear, that must be so stressful. I completely understand your situation. I have dealt with my husband's autoimmune Myasthenia condition for 3 years and there were times when we were just so helpless with the condition. It surely teaches you many things, strength and humbleness the main. With all my experience dealing with his condition I have learned that an autoimmune diet and a very healthy lifestyle are ways to keep it in control.
I wish you good health @grindan
It sounds like your husband is lucky in having the support of a caring wife! That is such a blessing when you struggle with this sort of illness. 💚
Thank you for the well wishes, and for taking a moment to share your personal story. I wish your husband and you all the fortune in the diet and lifestyle keeping symptoms at bay! It really is amazing how small healthy changes can be huge with autoimmune diseases.
It's my first time stumbling one of your blogs and knowing you have such kind of illness and you still being so positive despite makes me happy for you. I'm praying for you.
Thank you for that, it's greatly appreciated! 🤗
Sending you a big !HUG
Stay positive and keep going.
It’s good to know your limitations. I so know. Living with my own.
Some days are good some days aren’t.
Thanks for sharing with us 🤗🌺
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I had some sort of ego smashing learning curve there lol, but once I stopped fighting it, my life was SO much better! Sounds like you're familiar with that, sending you hugs and hopes that you find lots of strength in unexpected places. 💚
Thanks for taking a moment to connect with your comment 🤗
Yes, I know. I didn’t want to accept it at first it took me yearssss… now I am 19 years further after I finally know what’s wrong.
Thanks a lot 😊🤗 much appreciated!
You are welcome, anytime.
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Thanks for sharing your story. Chronic illnesses especially invisible ones are often poorly understood by both the public and medical profession resulting in a certain stigma for some people suffering with an invisible illness. My partner suffers from an autoimmune disease and some of his symptoms are very similar to yours. Do you attend a patient support group? My partner finds his support group to be very helpful.
Oh gosh, that is so so so well said! Yes 1000x to all of that- even doctors who should know better will treat you unkindly... then you end up having to advocate for yourself while you're a total mess. Fighting an invisible illness can be such a soul sucking battle at times. 😣
I'm so glad your partner has found relief from a support group, and has someone who cares to understand! A supportive partner is gold with an autoimmune disease imo.
Although I've never tried a support group, I think it's a smashing suggestion! I think I will look some up in my area and try it out sometime 😁
Thanks for this great comment 🤗
Thank you so much for sharing your words.
It’s so encouraging the way you express how you feel, how you connect with the spiritual part of slowing down, connecting with yourself, your body and that what surrounds you.
I also want to comment about the photos, how sometimes, very simple photos have an incredible enlightening moment behind them. I have some of those and just one can understand the feeling when they were taken, thank you again for these sharings
I'm glad to hear I'm not the only one who does the photo thing haha! It really is cool to hold on to that feeling in your camera roll, revisit it later on 😍
I really appreciate your kind words, thank you very much for taking the time to leave this comment! 💚
Oh girl, I know what are you going through, and I know it's not easy, after I was diagnosed, I didn't realize what was waiting for me and I accepted it, but then the worst moments of my life started and then I started to realize what was waiting for me. I will never forget my husband's words and I remember them every time I hit rock bottom. Certain diseases affect people who can cope with it and in the worst moments know how to get back on their feet and fight on! You can do it! I wish you all the best and don't forget, you need to fight on!
Your words really resonated with me... that feeling of the disease starting to kick up and take over your life... It's so easy some days to not want to fight. And some days I don't, I just fall apart... Then, I collect myself and get the strength to go back at it- well, you know.
It sounds like your husband is rooting you on, that's awesome! Sending you lots of love and appreciation for the solidarity in this comment! It really means a lot 💚🤗
Your journey of self-discovery, acceptance, and finding joy in the midst of physical limitations is truly inspiring. It's evident that you've found ways to make the best of your situation, from nurturing your creativity to developing self-care habits and maintaining a positive outlook.
It makes me happy that you found inspiration here 🤗
Thank you for your kind comment!
I could feel the pain when reading this article of yours. Living a life is a challenge, but the way you handle it, is the real challenge. Your attitude to spread joy while you are suffering, shows how bold you are. Hope Almighty reduce your suffering and pain.
Thank you so much for your well wishes and thoughtful words 💚
I am truly amazed by you, and there are no words that can fully express how I feel about you. You can be likened to a warrior who always fights. I cannot imagine what your days are like, but one thing is for sure, we are always here for you in this Hive community. We will always be your listeners and will always support you. Thank you for your writing, as it takes great courage to write about it. Hugs 🤗❤️
I'm so sorry for my late response!!
Your words really mean a lot to me, thank you so much for the solidarity and kindness in this comment! 💚 I'm always blown away by how much support we find here when we take the plunge to talk about something heavy... Hive really is such a beautiful community 😍
I'm grateful to you for the light you've shared with me here 🤗
Oof, I had to Google search what the illness is, and all I can say is you're a strong and resilient woman! I love that you turned the darkness all around you into Joy and you saw the slightest glimpse of light in that dark.
I have been a victim of asthma since I was a child, even though I know it's nothing compared to yours but I at least know a little about how you feel.
I go everywhere with my inhaler cause my worst nightmare might strike anytime and the absence of the inhaler when I really need it results in seizure of breath and sometimes I faint.
It's something I find so embarrassing fainting in public but I've always tried to take precaution and see the good side of it all.
Thanks for sharing this Grindan!
It resonates with me as well.
Best wishes dear and I really hope you become the best you can be, even with the limitations.
Zeegirl 🌻.
Oh goodness! Asthma is so terrifying, the way that there really is no way to be fully prepared at all times... thinking of you fainting makes me want to give you the biggest hug! What a scary thing to live with, and then you have to suffer embarrassment too... That bums me out, because really we shouldn't have to be embarrassed when something happens that we can't control, but some people can be cruel about these things :(
You're a strong and resilient woman too! I really appreciate you taking the time to offer some kindness, and share your experience with me here. 💚 Sorry that my response was so slow!! 🤗
Warrior! That is what you are. I wish you always have the strength to face that condition that afflicts you. Joy yes, is great medicine, and thankfulness too. I'm glad you found Hive a helpful space. I know what you are talking about because it is for me too.
Shucks, thank you very much for this beautiful comment! 💚 And apologies for the late response!
It's really brilliant how so many of us come here and end up finding just the best support! A few of my closest friends were made on Hive, and my blog has always been a great diary of sorts when I need to get something off my chest.
It's awesome to hear you've found the same sort of thing here 🤗
Your writing left me speechless. It's amazing what you went through, but you are an admirable person.....
Not just anyone would have taken the attitude you did, nor would they have had the patience and commitment to themselves.
In spite of everything you had to go through, I'm glad you are still here, and you have generated such a positive and pleasant attitude in such difficult times.
I hope you continue to maintain that positivity and move forward as you have been doing.
Have a beautiful and blessed day, I send you greetings and many hugs! 🙏🏻❤🙌🏻
Sorry that I took so long to respond to your wonderful comment! I really appreciate the encouragement and consideration here 💚
Although I fail sometimes, I try my best to stay positive... Cause having bad health and a bad attitude is just double trouble. 😵 hehe
I hope you are having a wonderful week, big hugs your way as well! 🤗
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Thank you!!
Hey! I'm so pleased that you dared to share this, as it's never easy to write about the difficulties that we face... 🙏🤗
A big hug to you 💞
Thank you my so much friend! A big hug your way as well! 💕🤗
@grindan...
This is the main thing that many may not understand. We deal with this enough... not something we "try" to consider. It's called the "Invisible Disease" for a reason you know. "But... you look so good!". We don't want special attention... gosh, we are just people after all. Anyway... kudos to you, for sharing your journey with us. You know I have about three posts in my PeakD drafts on this very topic. But with all the words you have put on paper here. You have said all that needs to be said; we deal with the cards we've been dealt. I can remember many memories... 2019; I could walk up to check the mail... cane in hand. My current flare-up has taken my ability to walk. But what do I always say? That's right!
Thank you for sharing this with us, dear soul...
!LUV
!WINE
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Hi dear
I was reading through the comments and yours caught my attention. Actually because I’ve seen how you care about people on discord, saying hi, how are you doing? every opportune time.
I’m so sorry about your health, please be strong and calm. Staying positive is very important, and talking to people too.
May God see you through.
Much love 💕
Hello my friend 🤗
I know with the new development of being unable to walk, life has gotten a lot tougher... I really admire the way you've kept your brightness intact through that! You are always such a ray of sunshine in everyone's lives that knows you, even though you have so much pain...
You're one of the people that comes to mind when I have a hard day and need to draw strength for sure, because it's so wonderful not to feel alone in this disease. Huge hugs your way Wes!
#tomorrowisthegoal
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I never could have guessed as your spirit is so Light and always cherry. But I know we all carry things we haven't shared but I am happy you did 🥰 and it will for sure be read by many who feel like... So its not just me.
Helping many to feel less alone ❤️ and others to understand what living with illness can be like.
So sorry that you struggle with this, but it shows your Strength and positive attitude.
Much love to You 🤗💕💕🤗
Knowing this makes me so much braver for sure! Life is filled with too many caring peeps to feel as if we are going through something alone!
Thanks so much for the support and love Saffi 💚 Sending ya a mega hug hehe 🤗
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You must be killin' it out here!
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I respect and value the courage you have for telling this story so wonderfully! Brilliant, @grindan, brilliant!
Thank you so much for this kind comment!! 🤗😁
Hi beloved Grindan.
I must say I'm blessed to read your post today, seeing someone with such positive vibes as yours is rare.
I'm glad to know the effort you've made to stay strong and happy. May God bless and keep you.
We all love you, and will continue to.💕❤️
Shucks, thank you so much for that! I really appreciate this sweet comment 💚🤗
I read your story. It is heart-touching. In my practice, I had such kinds of patients and I tried to give them mental and physical support. I really understand what you suffering from. But your positive way of thinking will make you more and more stronger keep it up. Build up positive energy around you as much as possible. take care. Lots of love and lights.
It makes sense that in your experience with you patients that you found a positive outlook was beneficial- I believe the thoughts we take the time to hold on to really do have a profound effect on our lives! Thank you for this encouraging comment! 💚
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I understand this as my son had MS. Take care.