#you know. i think the best way i can describe my fibro flares to someone are... day 3 of having a really bad flu

[rubiesintherough]

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[glutenfreechef5]

Yesterday I literally thought I was dying. Honestly, I haven’t experienced such a severe 24 hour fibromyalgia flare in a long time. It came on as soon as I woke up Tuesday morning and lasted literally until 10 AM today. I don’t have the words to describe the feeling but I can describe my process for the next two days.

No matter how positive you think, or how mindful you are, there is just no way to dispute the fact that chronic illness sucks. Backwards and forwards. In and out. Up and down. All around; fibro stinks. Some days you wake up feeling deceptively great ready to take on the world. Most days you lie in bed angry, exhausted, and barely able to move wondering what you could have possibly done the day before to feel like you were ran over by a semi-truck. You relish the good days but you also rue the good days since good days usually mean you’ve push your body too far. So you wake up the next day wishing the day before never happened.

You are constantly thinking ahead. Reshuffling your invisible spoons, rearranging your schedule, re-prioritizing what is most important to get done and what can be put off until a better day. Trying to mark one more item off your to do list before your body most certainly gives out on you. Then there’s the fibro fog and memory lapses. The jolts of pain. And the fatigue. Did I mention the fatigue? ( I might have forgotten). You don’t know unrelenting, indescribable, nonsensical fatigue unless you’ve lived with fibromyalgia. This post could go on and on but I’ll spare you. I think the point has been made.

And for those of you living with or knowing someone with a chronic pain condition, this post is written to help you better understand the emotional, mental, and physical toll that chronic pain takes on many of us living with an invisible chronic illness; specifically following a fibromyalgia flare.

Since my illness happens to be fibromyalgia this post is written from my personal perspective. But understand that many of these emotions, feelings, and perspectives are shared across different illnesses and it is my hope that by sharing just a glimpse of what is so often unsaid I’ll bring just a little more clarity on the complexities that come with living with a chronic illness.

For me though, what may be the worst part of living with fibromyalgia is the inconsistency of the illness. Even though I’ve lived with fibromyalgia for 7+ years; every day I learn something new. Each time I “flare” and feel increased surges of all my symptoms, it’s always like the first time since what causes today’s flare up might not be what caused the last one. You see these high tides of fatigue and pain are best known in the fibro world as a flare. What exactly is a fibro flare you ask? Thankfully I made a whole post about it.

What is a Fibro Flare?

Simply put :

“A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different timeframes for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”

You can learn more in my post here but what I most wanted to get across in this post is the emotional, mental, and physical pain that flares put on those of us living with chronic pain.

Guilt

Inevitably, flares hit us during the most inopportune times. Perhaps due to the subconscious stress of an impending big event, the physical toll of a long day, or even a sudden change in the weather the most common emotion that hits us during and after a flare is guilt. Guilt that we’ve had to cancel an important event. Guilt that we called into work again. Guilt that you let your friends or family down. The problem with guilt is that it is taxing to our already taxed systems. It is also insidious and has been one of the hardest emotions that I personally have had to learn how to manage.

Insecurity

Immediately after a flare; you begin to feel insecure. Questions like Did I push to far, can I begin again, should I go back to work, and can I handle my life begin to surface. It is easy to feel broken, embarrassed, and full of self-doubt. Sometimes I feel like I won’t survive another flare and I wonder how I’ve gotten this far. These feelings can linger for days after a flare has subsided.

Pain

Pain is a mainstay with fibromyalgia. Pain is always there even when it is managed by medication. Pain is unnatural to our bodies and sometimes it is hard to know exactly when flare pain begins and ends. Learning to exist day to day with extremely high levels of pain is something that those of us with fibromyalgia have learned to do very well. This constant pain is unnatural and can be worse immediately before or after a flare.

How Can You Help

This is just the surface of what happens after a person with chronic pain experiences a flare. If you are a caretaker, friend, or associate of somone living with an invisible illness it can be difficult to know how to help or what to do when your friend experiences a flare. You may feel helpless and not know what to do or say to best help. Come back on September 24th to learn how you can help.

To learn more about chronic pain and pain advocacy visit the U.S Pain Foundation

The First 48 Hours After a Fibromyalgia Flare Up | Living with Fibromyalgia (REPOST) Yesterday I literally thought I was dying. Honestly, I haven't experienced such a severe 24 hour fibromyalgia flare in a long time. 971 more words

[chronicbodylove]

Sitting in Dublin airport waiting for my gate to open to see friends I haven’t seen since I returned to Ireland from 4 years of travels from 2011 to 2015 had my heart in a flutter. I didn’t think I would even make it this far so excitement was an understatement. I booked long-term parking for the week (€35) so I could drive straight to the airport car-park and back without bothering anyone. I never thought of how much energy that alone would take out of me and I kind of resigned myself to not going but… needless to say the Universe works in mysterious ways and so began a very spontaneous holiday when my sister offered to get me to the airport and I borrowed my mam’s spare walking stick – a mind-melt in itself; but I could barely hold myself up so this was a good compromise to get my waning ass to a sunny destination. I could feel everyone in my family rooting for me to make it. (Thanks guys!)

Two days prior to departure something inside of me started tightening and it happened all day. A feeling like someone was pinching and putting every one of my muscles and nerves in a vice grip; it was excruciating and left me very weak. If you know those cold compresses that you snap the button and everything inside hardens and freezes up it’s a similar body sensation to that, only I’m not a cold compress so my body – through no fault of its own – is definitely mis-firing for some reason. I had just one more day in work to push through but that feels like climbing Everest to anyone with M.E. and fibro or chronic pain. I finally broke down and had a big cry and hug with my mam in the morning (natural medicine at it’s best). I was nearly falling asleep at my desk in work because I had to take mini doses of xanax (0.125mcg) to just take the edge off the spasms and burning pain. Up to this point I have only ever taken cbd oil, thc oil, edibles or xanax at night; but it all comes full circle and just when you think you are managing your condition someone pulls a rug and you realise you haven’t been out-running your pain at all; it’s actually getting worse in ways.

  Not knowing if your body can hold itself up is a humbling experience, even more so when you leave your routine to travel by yourself, but I didn’t manage alone. I reached out to the group in Chronic Pain Ireland asking them to hold a good thought for me for a lower pain day and someone suggested to ask for airport assistance which I did when I was checking in online. But when I reached the airport, I checked my cabin luggage in and never thought to ask the desk about the assistance. I figured I had to find a specially dedicated desk. Well through fatigue and stubbornness I made my way level by level to the departure gate. Drinking a decaf coffee after check-in and after an hour’s rest I made my way to the gate. This all could have been helped if I had just sought out the airport assistance but my fear of being judged ‘not sick enough’ and the enveloping brain fog both kept me operating on auto-pilot to just get to the gate. Using the stick was a trip in itself. I had to slow my pace right down so it helped me conserve energy. It also made me realise how fast our society paces itself at – it’s too fast people! Fellow travellers bumped off me and stood on my feet trying to get around me faster and I thought: ‘Have I done this to people using aids?’ And the answer is Yes! Unfortunately I have tried to get in front of people many times, not considering anything but that they were in my way; slowing me from my destination and for that I profusely apologise right now.

Once on the plane there was nothing I could do but put on my eye-mask and stick earplugs in and try to stop anymore stimulus making the pain worse. Once I got to the other side I was too embarrassed to ask for assistance with the language barrier (again no need to be a martyr Niamh asking would have solved it for me easy peasy portuguesey) but I managed well enough taking it slow on the stick. I collected my luggage and through the kindness of Portuguese airport staff got skipped to the top of the queue for a taxi. Small wins yay:)

Checklist for my next holiday with chronic illness

Lift to and from airport both sides (Download Uber app if used in country)

Book Airport Assistance

Use Airport Assistance

Ask for help when needed

Eye-Mask and Ear-Plugs

The Ultimate travel pillow

Sunglasses

Walking stick/Mobility aid

Powerbank charger for phone/tablets

Suitcase with wheels

Use Google Recommendations for everything

Hoodie… because where ever you go your inability to regulate your body temperature will follow.

Copy of prescription

Is marijuana decriminilised there?

Book 2 days off to recover when you get home.

Fado Vadio Singer Joao Gonzales

The holiday itself was amazing. It took a few days of taking extra meds and powering down early at night to allow me to actually catch up with the girls, but they were so understanding we only did one or two things a day when I was feeling able and took an uber everywhere til I was strong enough to walk longer distances. Sometimes when you live with a condition you think everyone else has frozen in awesome time. But they have their battles and work and routines too, plus we had all calmed down from our backpacking days so the pace suited us all.

The sunshine renewed me. Oh how it renewed me! But more than that it was the laughter between friends that have backpacked and couchsurfed together and shared so many adventures in so many countries. Reliving our shenanigans made me feel real again. And we added so many laughs to this trip we could write a book on Portuguese faux pas. I got to watch Joao Gonzalez sing Fado Vadio – Portuguese Blues (Fado Vadio literally translates as bohemian, vagabond or loafer Fado and is used to describe Fado sung more to express emotions than for commercial ends which explains why I loved it so much.) I highly recommend it if you find yourself in the Tourist area of Bairro Alto.

The magical sound of the infamous 12 string Portuguese Guitar accompanying Joao above

We used Google Recommendations and it saved us a tonne of time traipsing around discerning between mediocre tourist meals and authentic Portuguese food and top notch local entertainment so be sure to check it out to conserve some energy on your next trip!

Marijuana is also decriminilised in Portugal so I didn’t feel like a misgreant when I needed some natural pain relief. They have adopted it so well; Irish Government take note! The whole city had a very chilled out vibe with a great park life dotted with kiosks selling 70 cent beer and €2 wine. I wasn’t drinking alcohol but I did appreciate their freshly squeezed orange juice mmmm. There was hula hoopers, circus performers, tai chi & yoga enthusiasts, just lots of people hanging out, being friendly and jamming with their instruments of choice. Plus they had park massage areas and were so dog friendly they’d probably massage the dogs too:)I felt rejuvenated when I was leaving and was sorry I had only the 6 days because by the end of it I wanted to walk more and I even got my hula hoop out for 5 mins before my leg pain put a stop to it. Who knows how much better we’d feel if we lived in a warmer climate?

I had a bit of weakness after the flight was delayed home and I had to stand on the bus journey to the airplane platform but I managed somehow. I returned to work the next day at 3pm to 11pm and instantly began a flare up. I don’t know how I managed to push through… my brain was literally shutting down. By day 3 I was glaring at people, feeling like they were about to tell me I’d done something wrong or just wouldn’t understand their question because of the rapid decline experienced with M.E. and fibro flares. I’m convinced it makes us work from our ancient limbic and reptilian systems of the brain; explaining why I feel driven from emotions such as anxiety and overwhelm along with heart palpitations, my cognition is impaired at that point but my nervous system feels under attack and keeps me wired from fear. I’m sure when more funding is allocated towards research they will uncover many facets of what we have been trying to explain to doctors for years. Our day will come but until then it’s camaraderie and sun holidays all the way. I need more of these vibrant colours and belly laughs in my life!

    How Not to #Holiday with a #chronicillness #fibro #meawareness #myalgicencephalomyelititis Sitting in Dublin airport waiting for my gate to open to see friends I haven't seen since I returned to Ireland from 4 years of travels from 2011 to 2015 had my heart in a flutter.