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The Reality of Living With a Fluctuating Condition

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Many people start each day with a refreshing shower, and then go to work or achieve their tasks for the day, thinking of it as nothing more than a quick way to wake up.

But for some people, like those with Ehlers-Danlos syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis or lupus SLE, it is the entire day’s chore, hard work and achievement that involves a great deal of time, pain, effort, endurance and spoons.

Here is a summary of two consecutive days from this week to show the reality of living with a fluctuating condition.

Wednesday:

When I woke up I immediately felt a piercing pain in my ribcage. I had managed to dislocate a couple of ribs in my sleep. I immediately took my morning cocktail of painkillers… It still somehow baffles me after all these years that I can wake up feeling worse than I felt when I went to bed.

After an hour of listening to music and playing mind-numbing games on my mobile in a failed attempt to distract me from the pain, I still hadn’t managed to sit up… I accepted that I wasn’t going to get much better — this was the reality of my painkillers at their full effect.

So I went to sit up and almost vomited with nausea and dizziness. I walked slowly and carefully to the bathroom with my towel, desperately hoping a warm shower might ease my sore joints or give me some energy.

I went to brush my teeth but it simply felt like I was taking a jackhammer to my bleeding gums. I took off my clothes, dislocating a different rib in the process and using both hands to hoist the taps on… While my body begged for rest.

The water pounds down like rocks. I didn’t feel safe enough to stand so I sat on the base of the cold bath while slowly easing myself under the scalding rain of rocks. I use the edge of the shower door to pry open the shampoo lid and then lethargically (and ineffectively) try to wash my hair, but it felt like I was holding up dumbbells the weight of trucks so I gave up and hoped that the shower would wash away the suds. I painfully opened up the facial wash and rubbed it on, but today it felt like tiny bits of glass. I immediately washed it off, the pressure of the water hurting my face… I reached for my loofa, still sitting in the base of the bath and realized it would hurt too much, so I resorted to rubbing in body wash with my painful, swollen hands as best as I could.

I could feel a headache coming on due to the overload of my senses, everything from feeling the water pounding on me, the smell of my body wash, the cold air tickling me or the sound of my music that today just felt like painful noise.

When it was finally time to get out, holding onto the sink and shower door I slowly stepped out and wrapped myself my towel before slinking down to the floor, holding my head in my hands. My joints screamed, my ribs demanded attention and I would have cried with soul-crushing exhaustion if I’ve had the energy.

I honestly don’t know how long I stayed on the floor. A few minutes I think. I accepted the fact that soon the cold would just make my muscles tense up more so I crawled, literally, to my bed where I collapsed still in my towel. Too exhausted to even get dressed or properly dry myself, I lay there resenting how quickly my life can change with fibromyalgia.

I spent the rest of the day too nauseous to eat aside from plain noodles and dry cereal, tossing and turning in bed. I attempted college coursework but after a few minutes I had to lie back down due to overwhelming pain.

Thursday

My alarm wakes me at 8 a.m. I hesitantly moved without too much pain, and actually felt refreshed from sleeping.  I take my pills and snuggle in bed for 30 minutes before getting up and starting my yoga routine (despite my cat thinking this time on the floor is for cuddles!). On good days I make the most of my extra spoons.

After this I trot downstairs and prepare a healthy breakfast before replying to a few emails and cramming in an hour of college revision. I then bundle my towel and hop in the shower (easily turning on the taps) with my favorite music playlist in the background. Not many people admit to this, but yeah, I totally did a little dance in the shower and lip-synced along to Green Day when my favorite tunes came on! A stark difference to yesterday’s painful and exhausting ordeal.

I got out the shower effortlessly feeling refreshed and energized, I got dressed, styled my hair, applied a little makeup and went into town to run some errands. When I got back I needed to rest for a couple of hours before I did a few hours of college coursework, but I made a meal for my loved ones and spent the evening gaming with my boyfriend. I was really exhausted that night and fell asleep quickly.

Now, there may be an “average” day (what I am typically like) but I still have days that are completely unexpected — both good and bad. For no reason, and without my control. This makes it incredibly difficult to plan anything, even if it is for later on that day. This means I often have to cancel plans at the last minute which I find embarrassing and isolating.

It is scary to live without any certainty of what tomorrow will bring, unable to predict or plan anything. Even the smallest daily tasks like showering can be exhausting for those with chronic health conditions. Every night we go to sleep unknowing of what the next day will be like — and every day is a cruel surprise of whether we are in control of our bodies that day or not.

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Thinkstock photo by narith_2527

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The Roller Coaster of Emotions to Chronic Illness Acceptance

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I spend a lot of time reading articles, memes and quotes on what it’s like to live with chronic pain and fatigue, hoping to find the magic words to capture the essence for me, but I never quite do. Don’t get me wrong — many thoughts and quotes resonate deeply with me, but as I’ve come to realize, everyone’s story is truly their own. So this is mine.

For me, pain and denial go hand in hand. I spend so much time pretending to be “normal” that I almost believe I am. I’m then genuinely taken aback when I’m floored by it.

I can have a handful of “good” days, and by good of course I don’t mean pain-free but days where the pain is mostly background noise, where the fatigue is minimal and where I can, more or less, do what I need to do. I know not everyone has even one of these days, let alone a few, but every time it tricks me. I start to believe, “Yeah I’ve got this, I’m pacing, I’m grooving, I can do this. I’m so winning this chronic pain life.” And then it gets me. Every. Single. Time.

Sometimes the flare is like a bolt from the blue. It’s standing from the sofa and realizing I can’t walk. It’s waking in the morning as if I’ve been drinking heavily for hours and the fallen down.

It’s sitting on the sofa for a “quick five minutes” and waking up four hours later.

Other times it creeps up. It’s the discomforts that grow. It’s the inability to get comfortable in bed because lying on that side hurts my hips but the other way hurts my neck, lying on my back causes spasms and lying on my front makes me nauseous with pain. Knowing that whether I give in and get up or if I finally fall asleep, tomorrow is not going to be good.

And it hurts. Not just physically, ‘cause you know, chronic pain… but emotionally. Mentally. It’s a crushing disappointment that I’ve got to change the day or week or project plan and dammit, it’s not fair. I had it. I just had it. I was in control! But it’s gone, slipped from my grasp without warning.

It’s a grief I keep experiencing when I have to say no instead of yes, even if the invitation is just a 20-minute cuppa with a friend because I need every one of those minutes to rest. Then the anxiety creeps in that I might lose another friend, miss out on the next invitation, become an outsider to the life I am so desperate to be part of.

It’s the worry that my employer will finally have enough of my illnesses and limitations when I have to switch a face-to-face meeting to a teleconference because I only had the energy to work that day, not get dressed and drive to the office, too. Or the embarrassment explaining to a new colleague why I have to take the lift just one floor or drive the three-minute walk to the neighboring building when yesterday I could walk twice as far just fine.

It’s the guilt I feel when I’ve snapped at the children all afternoon because that discomfort isn’t a discomfort anymore, it’s a fire in my belly and a knife in my back, and I just can’t process their questions, mediate their squabbles or tolerate their elbow-y cuddles.

It’s a snarling frustration, at myself, the illness, that I just can’t do it, whatever “it” is, no matter how much I want to. That I’ve got to stop right now and lie down. The pain, the fatigue, it wins.

It’s that feeling of uselessness when my daily “things I need to do” list is already pretty small and I’ve used up all the help offered or paid for today for the cleaning, school run and cooking, so why do I need more? Why should I? That I’m already a shadow of myself, not the me I “should” have been and the me I keep convincing myself I still am. And then I feel like a failure. ‘Cause I don’t have it. Not at all. It has me. And every time I forget, it reminds me, sooner or later.

I get through these “down” times eventually, sometimes during the flare itself but most often some time afterwards, and I tell myself I’m not going to forget again. I’m going to remember, I’m not going to get complacent, I’m not going to let it surprise me again because it’s just too hard to keep getting my head around. But do you know what? Those few days when it is under control, and I do have it and I believe it will always be this manageable… they’re golden. So for now, on this roller coaster route to acceptance, I need those golden days of denial, the hope those days of pretending gives me, the days when I believe I’m “normal,” that I’ve I got this under control — because one day, I truly will.

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Why I Share Articles About Fibromyalgia

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I share articles about fibromyalgia because I want to help people understand what fibromyalgia entails. Fibromyalgia consists of so many symptoms that affect people differently, which makes it difficult to understand. Even those of us living with this condition sometimes don’t truly understand what it’s all about.

We all know those people who think fibromyalgia affects everyone equally. It may be a person with fibromyalgia or a person who knows someone with fibromyalgia who thinks the condition affects us all the same. They assume if one person with the condition is able to be out in the working world, everyone with fibromyalgia should be able to work. They think if that person they know with fibromyalgia is able to do an exercise routine, everyone with fibromyalgia should be able to do that same routine. This tells me they don’t fully understand fibromyalgia. They understand what works for them or what works for that person they know who has it.

Fibromyalgia consists of symptoms that can vary greatly from person to person. Some people with fibromyalgia have “fibro fog” to the extent that it affects their day-to-day life. I’ve heard people say we all have memory issues – it comes with age. I don’t argue the fact that our memory can be affected from growing older. However, “fibro fog” is much more than the occasional walking into a room and forgetting what you went in there for. I want people to understand that not only is it much more than the forgetfulness that comes with age, but that hearing them say this insinuates what we have isn’t real, that it’s normal because we’re just aging. I wouldn’t say to someone with Alzheimer’s or dementia, “Oh, you’re just getting old!” It’s an insult to an illness one can’t control.

In sharing articles about fibromyalgia, I hope to help people with loved ones living with the condition understand what their loved one is going through. I want to give them a different point of view. At times it’s hard to explain to our loved ones what we feel like. So many of us put on a smile every day to cover up our pain because we don’t want to be that person who complains all the time. We don’t want our loved ones to see us hurt. We don’t want the pain to get the best of us or to win. Sometimes another person’s voice can be heard differently and by me sharing an article or being a voice I hope to accomplish this.

In sharing articles about fibromyalgia, I get to help others in a way I’m able to do while living with the condition. I’ve always been the caregiving and nurturing person in my everyday life as well as while I was out in the working world. For me to still be able to give back and be who I feel I was meant to be is self-fulfilling. I want to take this invisible illness and make it visible for all to see.

I want the newly diagnosed to understand after three or four years of going doctor to doctor and having test after test, they’re not “crazy.” Fibromyalgia is real! I want them to know that overdoing it will knock them down for days or sometimes longer, so learning to pace is a must. I want to help them understand what I already know because of my years of experience or all of the research time I’ve devoted to learning about this condition. To give them an ear along with my voice so they know someone truly understands how they feel. I want to tell them that although each new day can bring a new ache or new pain, which is usually just fibromyalgia doing it’s weird thing, don’t always overlook them or pass them off as just that. It’s important to check new aches and pains out because it may be more then fibromyalgia. You are your best advocate and you know your body best. Most importantly I want them to know that together we are “Mighty” and we are strong!

There are so many reasons why I share articles about fibromyalgia, but the biggest reason is to raise awareness of a chronic pain condition that might have invisible symptoms but shouldn’t be invisible to the world. I am impatiently waiting for an exact cause, a cure and a definitive way to test people for fibromyalgia.

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Thinkstock photo via Milan_Zokic.

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How Art Therapy Helps Me Cope With the Emotional Side of Chronic Pain

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It’s not hard to see why living with a chronic illness can be so debilitating at times. It can isolate you from friends and family and render your body and mind fit for nothing but bed rest. Your self-esteem can take a hit as you are forced into a different pace of life than others your age and it can ramp up anxiety levels because when you do go out, you are thinking about the worst case scenarios of your pain kicking in, letting people down and how you will cope if the shitty happens.

From my own experience, there are certain self-help tools that help to cultivate peace of mind, a sense of accomplishment and happiness. One creative practice I took to recently has had many benefits for me, and a new study reports that creativity and happiness are more closely linked than we think.

The study had hundreds of volunteers keep a daily diary for two weeks, describing their mood and rating how creative they had been. When they analyzed the diaries, the authors found that people who engaged in creative pursuits one day felt significantly more energetic, enthusiastic and excited the next.

Art therapy is a creative outlet of expression used as a therapeutic tool. It’s a form of psychotherapy that utilizes art media as its fundamental mode of expression and communication. Within this context, art is not used as diagnostic technique but as a way to address emotional stuff which may be confusing and distressing. But don’t be put off by the psychotherapy label – in essence it’s allowing yourself to play without putting any expectations on your feelings, emotions or pain.

The different types of art therapies that are regulated include:

  • Dance movement therapy (DMT)
  • Drama therapy
  • Music therapy
  • Visual art therapy

You do not need to have any artistic background or previous experience of visual arts, dance, drama or music to find art therapies useful to your individual situation. The aim isn’t to produce a masterpiece, but to use what you do during that time to understand yourself better. Allowing yourself to play without a goal is the probably the best gift you can give yourself.

Thanks to FACE Fibro and ME group on Facebook I was offered a place in an Art Therapy group that ran for eight weeks before Christmas. The group was amazing and consisted of some mindfulness techniques and lots of exploring and playing with different materials (so much glitter!). We sometimes worked as a group and other times on our own. The themes were varied but there was absolutely no pressure to “produce” anything. Our guide was an amazing woman who held a space for us to laugh so very hard with each other, shed a tear or two and pour glitter on just about everything. I’d highly recommend it even if you don’t think you are a “creative.”

I also partook in an online 30 day challenge with Creative Sprint. Follow them on Instagram if you want to join in the fun. They sent an email daily with a creative prompt. There were days I couldn’t move with the fibromyalgia and even a tiny creative sprint wasn’t possible, but I did catch up on my good days. The support from the community was fun and uplifting in itself and it was inspiring to see what others had created. I got enough out of it to buy a few copies of the book and give it out as a Christmas present last year.

Personally, I prefer some structure, so the groups and the book are a good fit for me, even if structure falls away when pain is extreme – it’s a nice preset to return to when it’s eased off a bit. But you may have other preferences or are already knitting your way to next winter or cooking up a storm with your kitchen creativity. Art Therapy is definitely not a “one shoe fits all.” Explore all your options if you can to see what really lights a fire under your creative butt. The organized sessions can take place in a one-to-one setting or within a group. If you feel lonely, or find it challenging to get to know people, you may find group art therapy helpful. If you feel more comfortable sharing your thoughts and feelings with just your therapist, you might prefer one-to-one sessions.

If you want to share your own experience below, I’d love to hear from you, or you can leave a link to your blog if it’s something you’ve written about before.

If you made it this far I thank you and encourage you to connect if you want help with your chronic illness. There is no need to struggle alone. I’ve found great info and workshops at Chronic Pain Ireland and also FibroIreland and the Irish M.E. Trust which have a free telephone counseling service available as well as support group meetings.

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Thinkstock photo via javitrapero.

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Why I Reacted Negatively to a Positive Fibromyalgia Post

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I am the quintessential architect of compassion. In fact, if you look up the words “sympathy” and “empathy” in a dictionary, you’ll find a picture of me underneath waving both sympathetically and emphatically. So I’m not quite sure why I reacted so negatively to a positive posting on a fibromyalgia forum. It wasn’t a twee comment, nor a notation of insincerity. It was a genuine heartfelt mention of all the things the person felt gratitude for since being diagnosed a year earlier. But like a pigeon spying a gleaming, newly washed car or a bald man’s head, I pooped all over it.

It wasn’t that I was jealous, just resentful. Yeah, I know, that is an awful thing to admit. But at least I’m owning my pettiness. Still, it was all rather perplexing, because I don’t do jealousy or envy, not even a little bit. But as I read her warm and earnest words, I couldn’t help but begrudge her zeal for life.

She wrote about how thankful she was that she was still able to work, and I thought about the fact that I had to give up my dream job. A job that I had trained for three long years to achieve. She listed how lucky she was to have the love and support of friends and family and I thought back to how, for years after, my friends and family thought I was faking my illness. That on any given day, the only person to see the pain and struggle I go through is my son, and that it is him and him alone. On my worst days, he carries the burden (not that he sees it as such) of having to care for the one person who should be caring for him.

I snorted derisively as she shared how she was still able to do all the things she loved and remembered with a lump in my throat the daily walks my child and I would take. Our “us time” where we talked about everything and anything, or my bed sheets stained with the art we created because we were to lazy to sit at a table because we thought it stifled our creativity.

And as she composed the fact that she would rather adapt to her illness than give up the things she loved, I spitefully noted that that was all well and good. That she was only in the early stages and that things were bound to get much, much worse.

And that’s when I stopped. Because like many chronic illnesses, fibromyalgia is a great deceiver. It lets you believe that all the things you love to do will continue. That the worse days can be overcome and that over time, the pain will lessen. It gives you a sense of well-being and the feeling that all is right in the world one day, and then it takes it away the next. And finally, it can slowly eat away at you, your confidence, your independence, your sense of how you fit into this world and the very essence that makes you who you are.

Why would I wish any of that on anyone?

After a couple of days, I went back and re-read her words. I saw her positivity, her strength, her determination to adapt and not let her condition defeat her, and I was filled with an overwhelming feeling of respect and admiration. That’s when I realized why I had been so damning of this random stranger. It was because I wanted to feel as she did. I wanted her fighting spirit and her will to never give up. I wanted her drive to succeed and to not let anything stand in her way. But most of all, I wanted her sense of self-belief.

So I’m not such a bad person after all. I just got lost in the mire of my own illness and one that was of my own making. And although there will be days where I will undoubtedly slip into the wallow that is my pity party for one, like the person who typed that comment, I need to adapt and be thankful for the things and the people I do have. It will not be an easy journey, but it’s one I’m willing to undertake.

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Thinkstock photo via Poike.

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If I Could Talk to Fibromyalgia...

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I am struggling to accept that fibromyalgia is running my life. On my “good days” I can forget for awhile. I can be social and friendly. I can do things like clean the kitchen, put laundry away, vacuum the stairs, or write an article. On those days I feel like just maybe I can lead a “normal” life. And then it comes back. And it’s always worse because I had a day with low pain and wasn’t expecting such agony. Some days the pain is excruciating. Some days it’s bearable. But every day, it’s there.

I decided to give my illness a personality and write it a letter. If I could talk to fibromyalgia, this is what I would say…

Dear Fibromyalgia,

Nearly four years ago, you invaded my body. You started with letting the nasty kremlars inside my thighs. “Kremlars” are what I can only describe as tiny invisible (imaginary) creatures that crawl around inside me under my skin. Only someone who lives with kremlars will understand. But you, you who came here uninvited brought too many friends.

Over the years you came and went, making your presence more and more obvious until you moved in and settled here without an invitation. Now my body is full of kremlars. And they have developed teeth and claws. They gnaw on my nerves and my muscles causing electric-like stabbing pain and spasms.

naked woman bent over in pain

Fibromyalgia, you seem to have no rhyme or reason for how you choose a body to invade. All I know is you show up uninvited, out of the blue, and take over a body as if it was always yours. I spend so much time and energy trying to take care of you that I have nothing left for anything else. You are draining and exhausting and just plain mean.

At first I thought the solution would be simple: take some pills and make you shut up. But you ignored those pills. You sent whispers to my brain telling it to ignore the medication. So I tried other medications. Lots of them. And you just kept sending out your little minions to make the medicine ineffective.

Everyone is a doctor now thanks to the internet. Once I started telling people you moved in, the ideas of how to get you out started flowing. First there was acupuncture, then chiropractor, massage therapist, osteotherapy, and lidocaine injections. You didn’t like any of those, but you fought back. Your minions, the nasty kremlars, continued to protect your hold on my body. Next came cutting out gluten, stretching, not stretching, exercising but not too much and not the wrong kind, the TENS machine, apple cider vinegar, magnesium,  omega 3, homeopathic, naturopathic, supplements, heat, ice… you get the picture.

The internet is constantly telling me ways I can get rid of you – giving me false hope that clipping a clothes pin to my ear will relieve the pain you cause. You, however, have the perfect master plan. You know just how to trick my brain. You send the kremlars to my nerves and send messages to my brain claiming I am in danger. My brain reacts by alerting my body’s stress response. Cortisol and adrenaline are released and blood rushes to my muscles getting me ready to fight or run. You activate my sympathetic nervous system, wreaking havoc on my other systems. I get hot, flushed, sweaty, then freezing. I get hives and rashes, but you also trick me into thinking I have a rash when I don’t so I scratch and scratch. And each scratch sends signals to my brain saying I have more pain and I’m in more danger.

And another thing…

It’s bad enough that you attack me physically. Do you really have to attack my cognitive functions like speech and memory? Standing at the front of a classroom in front of students having no memory of what I was about to say is incredibly frustrating. Forgetting I made plans with someone is embarrassing.

There are days when I think I have a good plan. Like those times I had an IV infusion of lidocaine and ketamine. You are too clever for that. You completely ignored the invasion of anesthesia and kept ordering the kremlars to cause pain. Or those days when you let the kremlars go to sleep and I forget you live in my body, I do all the things that need doing. And I do all the things I am often not able to do. This leads to pushing myself too far, and you must either get bored or my moving around disturbs you because you wake up those kremlars and send them out with a vengeance.

purple person keeled over in pain

You, fibromyalgia, have caused a pain loop in my central nervous system that makes everything hurt all the time. And quite frankly, I think you’re a jerk!

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Images by Kira McCarthy

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