fibroflare

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    Been hanging around for a while… #Fibromyalgia #hypermobileehlers-DanlosSyndrome(hEDS) #coeliac #Bronchiectasis

    Hi I’m Caroline and in the UK. I’m not exactly new here, I’ve been hanging around for months, reading a few posts and stuff. I’m currently having an 18 month long flare up which is making it really hard to function. About 12 years ago this wouldn’t have been a major problem but these days I work full time as a teacher. I’m the only one in my family who’s been well enough to work and what with covid and stuff and we have a lot of debt so I’m struggling along trying to do my best at work, while home descends into a filthy, cluttered hole.
    I’m lucky that I have friends who understand how I feel, but I’ll be honest, before this current flare it has been over 15 years since I’d had one and I can’t get used to the permanent exhaustion. It’s really getting me down 😢 #fibroflare #SpoonieProblems #Working

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    Thursdays are the worst

    Summer break is over and I'm back to work. Since I've started back, I've noticed that my fibro symptoms and flares have been worse on Thursdays than any other days.
    My guess is because we have 4 day school weeks here (off on Mondays) and I push myself too hard on Tuesdays and Wednesdays. I usually end up miserable on Thursday nights and don't do much and rely on my trusty heating pad. Fridays I usually feel better.
    Do you have certain days of the week that are worse for you? #Fibromyalgia #fibrowarrior #fibroflare

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    It's okay if you're not Super Mom...

    Today I had a really bad flare (fibro)...it was so bad I could barely get out of bed. It was also the first day of school. I wasn't able to help my son get ready, or get up and take any photos of his first day of 4th grade. I laid in bed, curled up in pain, and listened as my husband helped him get ready, silently thanking him that he was able to be there for our son, and cursing myself that I was not. As I scrolled through social media (to distract myself from the pain) and saw all of the other mom's posts of their smiling children documenting their first days...I felt like an absolute failure. Sometimes I feel like I need to document every moment of his life, and if I don't, I'm a crappy Mom.

    But you know what? I was able to give him a hug (even though it hurt), and wish him a fantastic first day. I did what I could, but I still felt like it wasn't nearly enough. I just feel like we have so much pressure to show the world we are perfect...and I need to get over it. I am NOT a perfect Mom. Most of the time, I wish I could be. I admittedly try to be. But I'm trying to be a little easier on myself these days; a little nicer to myself.

    I just wanted to give a shout out to all of the parents out there that are struggling right now. It's okay that you're not perfect. Your kids don't want (or need) a "perfect" parent....they want and need YOU. Flaws and all. ❤ #fibroflare #notperfect #youareenough #Moms

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    #babysteps #smallvictories #fibroflare

    My kids took this picture of me on day four of this last flare. Days 1-3 are me not showering, staying in PJs, and staying in bed or on the couch as much except to go to the bathroom. No appetite. 🤢😣

    Day 4 I take a shower, get dressed, brush my teeth, and even put on eye makeup and jewelry. I keep my appointments. It takes willpower to transition. I wear only the softest clothes.

    In this picture I am proud of myself and happy to be home with my pets. Barry gets so relaxed when I hold and pet him and starts to purr. That makes me happy. 🥰

    I want to remember this picture of day four. This is the building up my strength day. It is me pacing myself, picking myself up by my bootstraps again because my kids need me. Next time I flare, I want to remember day four is coming and I can get through the darkness of 1-3 days in hell. 😑

    Day five is today...I went on a small walk with my rollator and saw beautiful flowers, heard an excited red squirrel, felt rain on my skin and smelled the earth. I mopped the floor. I like the smell of Murphy's oil on the wood floors. I am careful and still end up straining. The rest of the day I will make myself rest because the mopping wiped me out and the humidity raises my pain levels. I won't go to the events I was invited to attend. I know if I do, I will start the flare up again.

    It's hard to say no. However a no to others is a yes to myself.🙂

    Tomorrow brings the weekly preparations, the laundry, and the grocery shopping. I will attempt it with modifications. I will ask for help. 🐢

    I notice with my flares there are 3-4days that lead up to day one, where I can see the signs and try to prevent it. I feel pretty bad but I am not flared yet. I carry on the best I can. 🤔

    Then there are 3 days of intense misery. 😖😵‍💫

    Then 3-4days of recovery where I'm still very tired and weak but I make the effort to rebuild. I might have a few days off or even a week before the next one starts brewing. There is a lot I have to catch up on from the days I was unable. 😶‍🌫️

    Day 4 though, is my favorite. It is the turning point. There is light again. Another victory!⭐

    My next step is to build a kit for flare days, when I'm too exhausted, foggy, and in pain to help myself. Maybe I need a list or mantras, or music, or permission to reschedule. What are your ideas that work for you?

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    Just needing to share my thoughts

    Every time I begin to start typing out hashtags for diagnoses I stop. I have too many to keep up with yet I haven’t even talked about most of them. All I know is all of the letters confused me. I have cptafbendadhocdocdocd 😄

    Today I’m in a #fibroflare after an intense week of breakdowns and breakthroughs. I’m in the process of healing my inner child and reparenting myself. All while trying to understand this new diagnosis of #Fibromyalgia #ChronicPain #CPTSD #severeanxiety and some strange neurological thing happening. Brain scan clear. And many more hashtags to come.

    I had therapy and PT today. I also made myself go outside today and go for a solo Vespa ride. We just got one so I could learn how to drive one. When/If we ever go back to Italy or Thailand. I’ve been terrified my entire life. My husband who I’ve been with for 20 years, is helping me learn new things.

    He doesn’t speak my medical language or emotional language either. So I literally have only a few people I can talk to. And even then, I don’t tell them everything because it’s SOOOOO much. I’m getting no where with therapist because I don’t feel like she’s on the same page as me. I mean I don’t know what page I’m in even.

    I’m attempting to be a writer. I mean, I am a writer. I just keep everything to myself. Because of my #ADD OR #ADHD I have no idea which one. I can’t comprehend things at times. So because of inability to keep focus, I have multiple stories started. Then I fizzle out. Anyhoo, 41, I love music and dancing when I can. I try to steeech daily. But when I’m in the thick of a flare, I can’t even move. It’s all I can do to get myself into the shower or to lay on the floor because that helps more than anything.

    Everything just feels heavy. Trying to figure out who I am and why I tick the way I do. It’s exhausting and I just don’t want to do this anymore. Not that I want to quit all together. I just feel that I need a break. But how can I tell my brain to just stop for a week. Let me go on a sabbatical or something. I don’t know why I’m ruminating on everything and can’t just be free of thought. The curse of a writer who can’t stop thinking long enough to write? Sounds about right.

    Maybe I should start a group for writers who just need a place to vent their thoughts out so that we can release the block? Or maybe there already is one.

    I know this is apart of the process. Learning what I’m grieving. Learning how to love myself and give myself some compassion. To be gentle. To be kind. But I’m throwing a HUGE BUT out there. But I don’t want to have to do that. I just would really love to wake up and not think about thinking. To not think about pain. To not think about healing and to be healed. I’m tired and exhausted of the pain and of the healing. I don’t even know what I’m saying r why I am. It’s just the automatic writing that happens. I’m not going to edit this so if there’s a ton of typos, so be it! I think most can figure it out. Thanks for reading

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    Lonely but not alone

    The pain has been really harsh. I can't sleep cause I hurt so much!
    In all this pain, it sure is lonely! Even when I have my family and Loki loving me, this pain is something I have to face. I am happy my family doesn't know what it is like!
    Other then this flare, things are good! My boy Loki is good!! Still gets me laughing though!
    Ps. Lucky to get this photo up! Fingers crossed to get another one up! Haha
    #Fibromyalgia #ChronicIllness #ChronicPain #fibroflare

    8 comments
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    Covid Jab Flare-up

    I had the worst flare up after my second covid jab, to the point that I was struggling to walk, had to get a tramazac injection (which only took the edge off), stayed in bed for two days straight, and weirdly, had some endo pain again. However, this morning I woke up and I didn't feel like I'd been run over by a bus! I nearly cried, with joy this time.

    I'm achey but in the normal, tolerable fibro way. I took my kids to the market day at their school where we enjoyed the sun and people and I got to spoil them a bit. I packed the dishwasher and just bathed my dog. And now it's time to rest a bit because I'm learning that Fibromania is a very real thing.

    The fear of a flare is overwhelming and it's hard to know when it will end. This one lasted two weeks, with this week throwing me into a pit of anger and despair. It also gave me time to think (and freak out, lol) about work and my kids and running the house as a single mom. I'm going to need to find a better, less stressful way of providing for my girls. I have no idea how, or what I'll be capable of keeping up with - chronic illness does not make for reliability and my schedule can be erratic depending on flare ups, doctors visits, and medication side effects. I also live in South Africa and it's not exactly set up to support any kind of decent career which pays the bills and isn't a CEO position.

    Not sure where to from here but I need to get out of my current situation before the stress has me bed bound more permanently. At least I feel better today and I've been able to enjoy some time with my kids and get out of the house. Perhaps it's time to take this better day and do some brainstorming on my next steps.

    #Fibromyalgia #Endometriosis #fibroflare #ChronicPain #Singlemom #ParentingWithADisability #ChronicFatigue

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    BEHIND THE MASK #Fibromyalgia #FibroFog #IrritableBowelSyndromeIBS #fibroflare #Selfcare

    This is a long one, but please read it all the way through.

    A day in the life of a fibro warrior can be a rollercoaster ride of stiff joints, body aches, nerve pain, and counting spoons. And just when I am proud of my new power to juggle all of that and go to bed with one spoon left…………….

    A DAMN FIBRO FLARE worst than any other flare I’ve experienced hits me like a ton of bricks!! A long with fibro’s best friends of depression, anxiety, and insomnia or sleeping too much.

    I’ve gone through this cycle a few times now, yet each time I swear I have cancer, lupus, or ms. I don’t wish for such diseases. I just can’t believe that this damn FIBROMYALGIA can have so many different symptoms that just pop up when ever they want.

    “They” keep saying fibromyalgia is not degenerative. “They” don’t know much about it. “They” say its not faital.

    Right now in this moment, I feel like I am dying as I wait for the results of yet another scan and blood test that will come back normal. Yet I don’t feel “normal”.

    I fight, push through, put on a happy face, and fake it until I make it. But, I’m weary, weak, not happy, and haven’t made it.

    Now don’t get me wrong. I deserve an Oscar for the performance I give every day. I am optimistic, compassionate, and pleasant around people. But in my room, where I am alone with my body, I feel every ache and pain.

    Do you understand me? Can you empathize with me? In your quiet space, how do you take care of you?

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    Fibro Crash continued

    Oh the pain 😖 this is what happens when I ignore my need to rest. We've been short staffed at work, so I have pushed through. My parents are both sick, so I have pushed through. My kids need me to make supper and run baths, pack school bags and give them attention and play, so I have pushed through. And now I'm paying. I had to ask my mom to come round and get kids ready and off to school as I can barely walk this morning. Thank God for my family! I have had to message my boss and let her know that I will log on this morning but that I will be going to the doctor and need to rest. My absenteeism is not something I'm proud of. Having to stop is hard...having to admit defeat is hard. But if I don't rest when my body is now clearly screaming at me, I would be stupid. I hate the guilt...but I hate the pain more.

    #fibroflare #Fibromyalgia #ChronicPain #Spoonie #Endometriosis #FibroFog

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    Family outing and fibro crash

    Decided to go out with my mom and kids today, somewhere different, somewhere nice. So we went out, had lunch, kids played outside in a huge play area, we listened to the tourist entertainment, chatted, had frozen yoghurt. Was so lovely to just be dressed and out. However, the girls and I are now home and I am so beyond exhausted that I could just curl up and sleep. The TV is on now and we're all zoning out. I hate putting my kids in front of the TV but have made peace with the fact that sometimes, it's the one saving grace during big crashes.

    What I do feel low about is the fact that one outing has me completely buggered. All the sensory input, the walking, lots of people. I'm not sure how I'm going to do bath time, supper, bed routine. Just wish I could lie down in a quiet room and not move until work tomorrow. Praying this doesn't roll over into the next few

    #Fibromyalgia #Endometriosis #Fibrofatigue #Fatigue #Spoonie #fibroflare

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