A graphic of a woman with long hair.

Twenty year old me was the life of the party. Yeah, I had a 2 year old son at home, so most of my time was spent working, taking care of him and school. However, those rare moments out were spectacular. I owned the dance floor and easily took full advantage of a girl’s night out. I was vibrant and boundless energy poured out of me like a seasoned rockstar. I’d grab a chance to jump on stage and dance for hours, letting the vibration of music shake my bones until I couldn’t stand any longer.

As 20 turned to 30, those nights grew fewer and farther in between. I noticed a change in my tolerance for being in a crowded place, the sounds were too loud and the smoke made my voice raspy. I was in denial that I didn’t quite enjoy it any longer. I did it though, because that’s how my friends knew me and that’s how we got together. We would bar and club hop, and dance our asses off. I’d pay the brutal price for the next week – but heck, it was worth it!

At 35, I may as well have turned 70. Entering a club felt like torture. The change in those five years were horrifying. All my prior manageable and hide-able symptoms were on display for all to see. Well, not physically, as I still looked like I was in my 20s. Inside, however, my body was rebelling from years of over-use, a bad diet and an un-nurtured rare disorder. I had just announced my health journey with my friends, but they didn’t grasp it since I still looked healthy.

I felt obligated to attend everything I was invited to, even if that meant putting myself in a place where it would take weeks to recover. At first my friends were disappointed and even upset, which crushed me. Then I realized something important. If they cared enough about me then they would realize that I’m not 20 year old me anymore. I won’t apologize for it again and I certainly won’t apologize for saying no.

The writer sitting on a couch, making the "peace" sign.

When I can’t or don’t want to do something, I will simply say, “No thanks, not this time. Have a great time though!” When you deal with pain on a daily basis, a magical thing happens – your time becomes so precious. I’ll happily say yes to the things that I can do, knowing I may need to cancel, but I won’t apologize for it.

I can’t control my Ehlers-Danlos syndrome or related illnesses and flares, so by saying I’m sorry shows that I feel like I’m at fault and I’m not. I didn’t choose this illness, but I can choose to say no when my body needs me to.

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I have a number of chronic illnesses, and as a result most of my days are “in-between” days. An “in-between” day is when I don’t consider myself “sick,” as I can get out of bed and function in a basic way – but I also don’t
feel “well.” On “in-between” days I feel exhausted, have high pain levels and find doing even the smallest task a huge effort. In a way, these “in-between” days are worse than when I feel truly sick, as on those days I have no choice – I simply can’t get out of bed at all. On “in-between” days I do have an element of choice as I’m not bed-bound, and I’ve found it hard sometimes to make sensible choices about how to spend my day so I don’t end up feeling even worse at the end of it – both physically and
emotionally.

 

On “in-between” days I have to make things as easy for myself as I possibly can, while trying to get to the end of the day feeling it hasn’t been a complete struggle or a total washout. I have found these seven “in-between days” survival tips really useful. They are not anything spectacular or new, but they do help me get through those difficult times. I hope you find them helpful too.

1. Prioritize. When having to cope with an “in-between” day, acknowledge you are going to have to change your plans, as you won’t be able to get everything done. Delegate what you can, postpone what you can and only do what is absolutely necessary.

2. Give yourself time. For those things you absolutely can’t put off, make sure you allow yourself extra time to do them. Remind yourself it’s OK if it takes you a little longer to have a shower or do the dishes – it’s not a race!

3. Communicate. This is one I struggle with sometimes – but let those close to you know you are having a tough day. They might not fully understand what this means as those without chronic illnesses tend to see things in black and white – or “sick” and “well” terms. However, if they care about you they will understand as best they can and this way you won’t have to pretend you feel better than you actually do – which is a lot less tiring.

4. Succeed in something. For me, this is really important. I need to get to the end of the day thinking it hasn’t been a complete waste. In order for that to happen I need to feel I have succeeded at something. That “something” can be really small – I might have managed to post a letter, sort out the washing or make a few phone calls. This helps me
hold on to a sense of normality and stops me from feeling too down.

5. Appreciate the small things. I find this really helps me cope when things are getting overwhelming. Sometimes just looking out of the window at the leaves on the trees blowing in the breeze or spotting a
bird or two on the feeder in the garden is enough for me to feel grateful for living around such beauty – it also helps take my mind off the pain and exhaustion I am feeling.

6. Be kind to yourself. Remind yourself this is not your fault. You are not a worse parent/partner/child/friend because you are having a rough day due to your chronic illness. You are continually fighting to be the very best version of you that you can be, despite all the challenges your diagnosis entails. I find that giving myself a break and not berating myself for having to change my plans for that day can help a lot. I also find listening to some favorite music, reading a book or watching a good movie or TV program can help.

7. Share. This last one I find helpful at different times and in different ways. Sometimes I take great comfort in posting in a Facebook or similar social media group for those with the same condition as me. I can also enjoy reading the experiences of other people in a similar situation as it makes me feel less alone.  Sometimes I find that to be too much, and prefer instead to reach out to a trusted friend who understands what I’m going through. Some days I don’t feel I want to share my experiences with anyone – but I do find it helpful to write down a bit about how I’m feeling. I suppose I find it most useful to share how I’m feeling in some way or other – rather than keep it bottled up inside.

This list is by no means exhaustive and I am sure other people will have lots of other helpful and valuable tips for coping with life with a chronic illness. I think it’s important we carry on supporting each other and sharing our experiences, in the hope we can in some small way make life a little bit easier for us all.

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I can write a very long list of the ways my chronic disorder, and all the comorbid illnesses that go along with it, have redirected my life. At first I could only see the negativity. I felt robbed of my life’s plan. The bitterness and pain caused me to shut out most.

When my self-pity and anger festered too long, I realized I actually had a choice. I could isolate and distance myself from those who love me, or I could share my reality and welcome comfort.

What I found, at first, was that neither worked for me. Isolating people who loved me wasn’t the answer. I wrote hundreds of dark poetry, as I found writing to be a way of expressing myself. I felt an immediate high by releasing the negative energy from within onto a sheet of paper or my laptop. It was temporary. I shut out the absolute best people because I feared what would happen if I shared my story.

So, I did it.

Regardless, I exposed layers upon layers, detailing the journey I had been on since my symptoms started over 20 years ago. What happened next was the most painful and ultimately rewarding part of having a chronic illness. I lost friends. I was ridiculed, I was called a hypochondriac because “there is no way one person could possibly have so much wrong.” I was told I looked healthy and wanted attention. The gut-wrenching torture of hearing “friends” break me down in my ultimate time of need confirmed why I originally encased myself in a “protective shell.”

As “friend” after “friend” and even family members mocked me, an unexpected transformation happened. I had an epiphany. I realized my illness had given me a gift. It was weeding out the people I shouldn’t have in my life with those who deserved a precious spot. Old friends were replaced with new ones and my tribe contained to a select handful.

Now, when I look around, I have genuine, kind-hearted and compassionate people surrounding me. So, no matter how long a list of contention I have toward my genetic disorder, the gift it gave me outweighs it all. After all, isn’t life ultimately about being surrounded by the people who love you most? I sure think so.

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In my house, there is a bar. It is a small corner bar behind which we have stored over a decade of gifted and acquired alcohol we rarely drink. My roommate is a bartender, and we lovingly call the bar the Broken Bodhran, with a celtic knot work drum hung on the wall above it. The wooden bar corner stands at a right angle from the far wall of the room, and past it is the door to the hallway. The height of it is about a centimeter below my hip bone, which I know, because in the first year I lived there, I had a bruise in that spot almost constantly.

 

After we realized my aunt had sported the same bruise for years, we used foam padding to cover the corner of the bar. We began EDS-proofing other spots in the house where we ran into door frames or tripped over things, and stairways which were dangerous got landing lights. I put bright colored post-it notes on the doorway to my room, like air traffic controller flags meant to wave me down the right runway.

Proprioception: from Latin proprius, meaning “one’s own,” “individual,” and capio, capere, to take or grasp, is the sense of the relative position of one’s own parts of the body and strength of effort being employed in movement.

Injuries are a common complaint that leads to an EDS diagnosis. Constant sprains, particularly the same joints over and over, with no breaking of bones, are strong indicators. By the time I was 17, I had severely sprained both ankles and wrists multiple times, and dislocated my knee once. During a Live Action Roleplaying event, I got run over by a man twice my size while wearing flimsy ballet flats. The bones in my foot jumbled like marbles in a sack and I panicked, hastily shoving them back where they belonged just to get rid of the wrongness feeling under my skin.

In my 20s, I got a tattoo along my upper spine, and discovered it to be the most painful ink I’d ever gotten. I leaned with my chest against the back of a chair and squeezed the metal bracing so hard I dislocated my hip. I had physical therapy for four months to make walking less painful.

Kinesiophobia: an excessive, irrational and debilitating fear of physical movement and activity resulting from a feeling of vulnerability due to painful injury or re-injury.

It’s challenging, to explain to someone how proprioception and kinesiophobia strain your mobility and make it difficult to function. Those two things together seem like hypochondria and anxiety, like two issues people think you should just be able to “muscle through” and “overcome!” Except, they aren’t.

Imagine you had a part of you constantly wailing that the sky was falling. Kinesiophobia is my Chicken Little, assuring me I will hurt myself if I do that, that I must always be careful. It is the drop in my stomach when my heel comes down on a step just a little bit off, and I tense and panic and snatch at the railing. It is the steady increase of anxiety as I get tired, because I know the active observation that replaces my crap proprioception gets lax when I’m tired. I do a task a thousand times, and on the thousand-and-first time, I turn my ankle.

So, as you can guess, the worst part of my Chicken Little is that the little craphead is right. The sky is falling, and he’s got the evidence to prove it. I have a lifetime of strains and sprains and utterly ridiculous injuries like tripping over my own foot or falling up the stairs that he calls on.

woman wearing a baseball cap and giving a thumbs up

What do you do when your Chicken Little is right? I save the strength, and I use my resources wisely. I use a chair sometimes not because I can’t walk, but because pain is exhausting and I don’t need to walk into a door frame today. I pace myself, and I take on intellectual tasks over physical ones because they don’t demand I use up my resources before I’ve climbed the stairs to my room for the last time that day. It doesn’t quiet the voice in my head constantly alert to the possibility of injury, but it does give me the wherewithal to handle that voice.

The sky is falling!

It’s OK. It’s always falling. I got this.

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“It’s OK if you just wanna throw up your hands and say, ‘Life sucks.'”

There’s a lot of comfort in having a community where I am open to talking about the good, the bad and the ugly when it comes to my many chronic illnesses. But sometimes, when people try and start up a conversation with me about my health struggles, it ends on a very flat, unattractive, conversational note that makes me question afterwards the other person’s true intent.

 

It starts out as a normal chat, facts about my life and my health. But then all of a sudden it ends with this quote: “Admit it, your life sucks! It’s too difficult. Just say what everybody wants to hear. Maybe sometimes even you want to hear it yourself, so just say it.”

In between multiple ER visits and a wild goose chase after unbearable symptoms no one could identify, I’ve had some difficult conversations with my mom about life. There have been moments in the past I felt like I was being held in the bottom of a boat, a level 10+ on the pain scale, a never-ending pounding sound ringing in my ears and an empty stomach screaming for water and food, for the agony to go away.

After I experienced those moments, I didn’t come walking out into the sunshine with a banner over my head saying, “Life Sucks.” I came out crawling on my hands and knees, barely able to say a word. And if I could have said something then, I wouldn’t have admitted defeat. I walked on fire for that long and made it out.

Yes, I did ask myself, “why me?” in the moment of debilitating pain, but as time passed and I got on a better medication so I could eat and drink and finally had some hope as to what was really causing the pain, I started praising Jesus.

And because of that joy and that praise after walking on literal fire for so long, people give me side looks and facial expressions that are equivalent to question marks… “If she really had experienced level 10 pain, she wouldn’t be acting like this.”

My reactions to my life experiences are mine, not yours or somebody else’s or your neighbor next door who has the same illness. Mine. They’re not always perfect reactions, I will admit that, but once I have everything in perspective and lined up for the future, I am not admitting defeat. I am just getting started on the battlefield. With God and my family, the people who have seen me at level 10 and level 0 regarding pain, I wake up every day and I fight against the possible reality of level 10 pain, ER trips, no results, no relief.

black and white photo of a woman's face

When one battle is over, I take time to rest. Then I get back up and prepare myself for the next storm. I stand amidst a field of giant diseases, chronic issues, larger than life fears and I face them all with a banner that reads: “Whatever my life, whatever my fate, I will not admit defeat.”

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It’s 2 a.m. and everyone else in my house is sound asleep. The pain from Ehlers-Danlos syndrome has jolted me from a nightmare where I was Arya Stark and “Needle” wasn’t quick enough, nor was my protector, “The Hound,” from a random jab from a faceless backstabber.

The stab was in the exact spot where most of my pain has taken over my back. Asleep, my mind conjured up fantasies and jumbled up the last episode of Game of Thrones I had watched hours ago to incorporate the justification of pain waking me up. Dazed, I quickly looked around for “Needle” as to defend myself before I realized I was neither Arya Stark nor anywhere close to Winterfell. The only remnant of that brutal nightmare was the pain stuck under my shoulder blade, so deep I could vomit.

 

I feel immobilized by the pain and too exhausted to move, but I know it’s not going to allow me to sleep. I have to get up and find something to dull the pain and inflammation and promptly get me to get back to that bar. If I fall asleep quick enough I am sure I can reconnect with the coward who dare stab a ͏young girl just looking for a bite to eat.

I’ve done it plenty of times. After waking from a nightmare, I accidentally fall back asleep to resume my unwanted position. This time I wanted it. I wanted to feel like the pain wasn’t coming from my genetic disorder. I didn’t want it to come from anything but a bloodbath of a battle where I was fighting for my life – because that’s what it felt like. That’s exactly what it felt like as I stumbled down the stairs, angry I never seem to prepare a bedside, “lifesaving,” sleep-inducing concoction of Tylenol PM  and ibuprofen with a bottle of water. No, I ignorantly forget that step as my sleep-deprived body climbs into bed each night.

My “sleep-drunk” body finds its way to the bathroom downstairs. I’m careful not to make too much noise or even further recognize that I’m past the point of returning to seek my revenge or adding a new name to Arya’s long list of those who must die.

No. Now I’ve been up too long to be Arya Stark. Instead I crumble on the sofa, in a position I’m sure to regret in a few short hours. I try to will myself back to a place where pain actually makes sense to me. It makes absolute sense to feel like someone has stabbed you in the back when they have. However, it doesn’t ever seem to make sense that there are no gaping holes in my body accompanied by my pain. There is no blood gushing out to justify my disorderly walks and physical weakness.

I lay there on my sofa in a fetal-like position with no visible wounds but tears streaming down my face as I wait for the PM portion of my Tylenol to start working. I wish I had something stronger to dull the pain – but my pain management choice, that I regret each time I’m covered in tears, will work just enough to dull me back to sleep until I can figure out a better solution.

It’s that moment when I realize, although I don’t have gaping wounds, nor am I dripping with blood, my pain is as real as any warrior in the middle of a battle. It’s a battle I fight each day, without a sword, without a protector, without someone to validate that I am indeed in pain. Naysayers don’t doubt the pain from blood, but they do doubt it in the absence of it. In a few hours, I will wake up with the same pain and I will have to become a fighter all over again. I fight when I’m awake and it doesn’t stop while I sleep – my mind is just more creative then.

woman with blonde hair in a white tank top

Maybe instead of fearing the nightmares, I can look forward to the new warrior I morph into between night and day. I would choose Khaleesi and walk through fire, unscathed, just for a break from the brutality of it all. After all, make no mistake – those struggling with chronic pain are the strongest people I know. They are, in my mind, true warriors.

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