Lately

On Pain, Limitations, and the Struggle to Accept

08.07.14

On Pain, Limitations, and the Struggle to Accept || Jade and Fern It’s been 7 days since my last migraine, and I’m starting to make plans again.

I can go back to work! I can do 10x more projects and blog posts! I’m unstoppable!

I’ve been here before. In fact, this pattern plays out every time I get a break from migraines for more than a few days. What can I say, I’m an optimistic person.

The problem is, I have chronic migraines and fibromyalgia. I live well in spite of this, but they aren’t going away anytime soon, if ever. And accepting that fact is even harder than dealing with the pain.

………………………………….

I want to share this story with you, this side of my life. Because it feels like I’ve been deceiving you a little bit. I mean, I LOVE making things and blogging about them and joking around and being ridiculous. I have a lot of fun in my life and try to live every “well day” to the fullest.

But pain is an enormous part of my existence that affects me daily. To keep that off of this blog is to deny my story. Blogland can sometimes be all sunshine and rainbows, and that’s awesome, we don’t want to be confronted with hard truths every day. But we all have adversity and struggles in our lives, and I’m sure many of you have pain or know someone who does. Today, I’m honoring that.

………………………………….

Life with chronic pain is a constant whirlwind of emotions. There are days when I sob and shake my fists at the universe, and days when I am so filled with hope and elation that it feels my heart will burst.

My therapist tells me to have understanding and compassion for my body, but truthfully, I can’t help but think of it as a saboteur, sneaking up on my enthusiasm and ambition and knocking me into bed, sometimes for days at a time. (As a result of 12-15 migraines a month, I have seen almost everything on Netflix, including ALL available episodes of Law & Order and its many spinoffs).

When you have a chronic pain condition, your nerves become inflamed and overactive, so you end up being more sensitive to more stimuli and have more pain (that was a terrible explanation of a medical truth, but hopefully you get the point).

In the last few years, the most unpredictable things have started to affect me. Sunlight glinting off the ocean at the beach—migraine. Moved too briskly on one of my daily walks—fibromyalgia flare-up. Laughed so much my jaw started hurting—migraine.

It’s like the friggin’ chaos theory, a butterfly flaps its wings in Brazil and I end up bedridden! On Pain, Limitations, and the Struggle to Accept || Jade and Fern

My (bunny) heat pack and eye mask—little comforts to get through.

The worst is how unreliable all this makes me. Deadlines are almost impossible for me to stick to—I’ve even had to stop working because I just couldn’t keep a job anymore with my abysmal attendance. My good friends know what’s up by now, and I try to schedule “backup days” for events that I plan or host in case I end up sick. I know it can’t be helped. But I hate that I’m not somebody my friends can count on, not really.

Now you know why it took me sooooooo looooooong to finish painting!

I’m not writing this to complain, or for pity. I know many, if not most, of us don’t get to live the lives we dream of. But that SUCKS, you know?

I am vivacious and passionate and adventurous and have dreams the size of blue whales, but my health forces me to live a small life.

Ok, so maybe this is partially about complaining. Sometimes you just have to get all that garbage out.

Time for the good news! It sounds like an awful lot when you put it all together and dedicate a whole blog post to it. But I DO live well on the whole, really. I’m happy. I’m still vivacious and passionate and adventurous and have dreams the size of blue whales. I want to do more and bigger and better, but I’m proud of what I’ve managed to do. I am not defeated.

Yes, of course, I’d love to improve, and whenever it’s 11:11 I squeeze my eyes shut and wish to be well. But I’m incredibly lucky too. I am able to do what makes me happy. This creative outlet has been life-changing, it’s helped me feel like I have a life again. (You can read more about how I rediscovered my creativity after a long dormancy on my Pinterest post).

12-15 migraines per month is a lot for the average person, but it’s actually a huge improvement from where I was three years ago, and I relish in having so much of my life back. They are less severe now, too—Botox is a miracle drug, people.

I find ways to outsmart some of the limitations I face, most recently acquiring a cheap lap tray so that I can work on small projects in bed on days when I only have a “minigraine.”

Sometimes, I’m even able to feel understanding and compassion for my body and its tricksy ways.

Life isn’t perfect, but it’s good, you know?

And anyways, what would Champ do without me being in bed so frequently? 🙂 Living with chronic pain - Champ the Cat cuddles during a migraine || Jade and Fern

Migraine days are Champ’s favorite days.

Wow, if you made it this far, you are a real trooper. Thank you for allowing me to share this with you. I know it was a long post and not the easiest, but it was time.

Now I’d love to hear from you! I certainly hope all of you have easy perfect lives, but assuming that is not the case, what struggles do you need/want to share? What comforts you when times are hard? How have you worked through adversity? Let’s inspire and encourage each other, and honor each other’s challenges!

Author: Marlene @ Idle Hands Awake

Maker, baker, cat momma, total nerd, perpetually covered in glitter/sawdust/paint. Blogging DIY and design for modern creatives.

29 comments on “On Pain, Limitations, and the Struggle to Accept”

  1. Best wishes for your future. And thanks for sharing–the blog-o-sphere does tend to be all rainbows and sunshine, but your post will be so helpful for others who are where you were three years ago. I hope you keep blogging!

  2. Hi there lady!

    So I know I mentioned this to you briefly via group emails and what not, but before I decided to switch my path to a Physician’s Assistant program, I was planning on earning my master’s in acupuncture, oriental medicine and pain management at NESA (New England School of Acupuncture) in Newton. They have a clinic, and satellite clinics, I really think it’s worth a journey back to Eastern Treatment … http://www.nesa.edu/clinic_services

    Once I’m finished with my PA training, I think I’ll go back and earn a degree in acupuncture as well! I miss you tons, and treat yourself well!

    xoxox,
    Claire

  3. Thank you so much for posting this, Marlene. This is courageous and moving writing. So much of blogging and social media showcase edited lives—only the vacations, happy moments, and creative victories are shown. It’s refreshing to come across posts that present the honest moments, the adversities, the challenges. I’m close to a couple of people with chronic pain, and your post presents such an honest view many need to hear. Again, thank you.

    1. Thank you, B.C., for this thoughtful and very heartwarming comment! I agree, the blogland is highly edited—which is not a bad thing, I use it primarily for entertainment after all. But sometimes we need to talk about the hard stuff too, and I always appreciate it when another blogger does that. I hope this post can be that for other people. Wishing you and yours all the best. xoxo

  4. I’m so sorry to hear you’re dealing with this. I recently went through a long period where I had undiagnosed stomach issues (since last November, finally losing weight in February and going through a long period of not being able to eat and hitting a wall of anxiety and depression as well due to all of that). They still have no idea what it really was but thankfully I was able to treat it via acupuncture twice per week and Chinese herbs. (Possibly it was gastroparesis. The endoscopy and CT scan showed nothing.) It was really awful – I had to work from home for 2 months, forcing myself to eat (or more accurately, my boyfriend forcing me to eat) and adjust to medication. I also felt like my body was a traitor and was so angry at it – I still am. It was also so frightening to me to have someone else take care of me and not be able to take care of myself. At this point I’m almost 70% back to normal. Even if you are “complaining” it sounds like you have a good attitude. I’m glad things have improved and I really hope they continue to do so. Mentally it’s exhausting to have to feel so limited by our bodies.

    1. Thank you, Jesse, and I’m so sorry to hear about your issues too! Health problems are just the worst. It definitely is mentally exhausting—I went through a long period of depression as a direct result of my health, too. I’m glad that you have been seeing improvement with your stomach—here’s to continued improvement for both of us! xoxo

  5. I am sorry for your struggle 🙁 I’d never know it, your blog seems to update regularly with all your beautiful projects; I am so grateful you can share your wonderful creativity with the world by blogging. Maybe your body lets you down here and there, but your words and art are an inspiration!
    xx

    1. Wow, Laurel, that is so lovely of you to say! Thank you! I’m glad that my updates seem regular, sometimes I feel like I’m not doing enough (or at least not as much as I’d like). But we can all only do what we can do, right? xoxo

  6. Lots of love to you my dear! I have always been impressed by you and your spirit. The fact that you live with this adversity just makes you even more of a miracle woman. xoxoxo

  7. I remember you mentioning your migraines in the Pinterest post, but had no idea it was this bad :(. I only wish I had known sooner, and I really admire you for sharing more about it, including all the “garbage”, because we all have garbage we need to dump and man does it feel good (and necessary) to just let it out. I think what’s most important about any ailment is the outlook one has, and I’m so encouraged to see you’re positive and still living well. I’m sure Champ helps out a lot . Cutie.
    I hope relief from your pain grows everyday. <3

    1. Thank you, Amy, I really appreciate all the support I’m getting from everyone, and you are always so supportive and encouraging! I did want to share sooner, but it was hard to find what to say and how, it needed a lot of mulling over. 🙂 But I’m really glad I did it! And yes, Champ and his brothers are absolutely helpful. 🙂 Thanks, friend! xoxo

  8. Oh wow hun, I had no idea about your migraines and fibromyalgia. This is such an honest post and I’m in awe of your optimism despite the pain. I’m glad you’ve found a space to vent out all your frustrations – we’re always here to listen. Oh and hooray for Champ! Cats = awesome 🙂

    1. Thank you, Stephanie! I’m in awe of all the support I’ve been receiving following this post. My intent was not so much to “vent” as to share my experience and hopefully reach others in similar circumstances so we can encourage each other—hopefully that came across! Thanks for reading, girl! xoxo

  9. I know we’ve talked a bit about this before- I’m so sorry you have to deal with this on the regular. I get a migraine about once a year and it’s the worst. I can’t imagine having them as frequently as you do. I’m proud of you for having such a great attitude about all of this and am glad you have good ways to cope, even when you’re in a lot of pain. Also, Champ is adorable- cats are the best caretakers! Any time I’m home sick, mine curl up at the end of the bed on either side of me almost all day.

    Sending you lots of love and well wishes!

    XOXO
    Becca | Ladyface Blog

    1. Ugh, I’m sorry you get migraines at all! They are no fun in any quantity. Thank you for your support, lady! And I’m glad your kitties take care of you too! They ARE the best caretakers, though I suspect their motivations have more to do with a warm body to lie against (at least in the case of Champ!). 🙂 xoxo

  10. Marlene, I am in awe of your bravery and spirit! Chronic pain is so debilitating, yet you seem to rise above it! I know it is a daily struggle, and I can’t imagine the anxiety that must come into play, but you are truly an inspiration to keep going (and to listen to your body). You are amazing!

  11. I just discovered your blog yesterday when pinning and browsing away, in search of tips for my new home. I say “new”, but I’ve been living here for 1,5 month, yet I’m still surrounded by boxes and half painted furniture. Because I have ME, another great chronic disease!

    I sticked around on your blog because you’re funny and I like your style, but reading this, I feel even more connected. Not that I’m happy that you suffer of course, not in the slightest, I wouldn’t wish it on anyone. But I can relate to the struggle and also the importance of still being able to do little projects and really appreciating it when your body lets you.

    Seeing all these perfect homes on pinterest en blogs can give you this feeling that you’re “inferior” (to be fair, that’s a bit of my problem anyway, also in other aspects in life), that your house will never look that “good”. So I do like it that you also show us the messy side a bit. Because you know, it isn’t about that. I can take two weeks of painting a vase in the time that another person decorated their whole flat, but the point is that I painted that vase, I put love into it and I can look at it, thinking: I painted that vase. (I never painted a vase in my life, so really don’t know where this example comes from.. Maybe I should start painting a vase;))

    So keep having fun making your house your own and doing your projects, they can make all the difference. Cherish the good days, and think of the good days when you’re in pain, this too shall pass. But to be sad and angry about the situation from time to time is perfectly logical. You didn’t ask for this, and it sucks big time. Oh and how a cat on your bed and a stuffed animal on your side (and a boyfriend, still working on that one;)) can help during those days, I know..

    Love from the Netherlands! xx

  12. I wish you health and many, many smiles…. one day at a time. I hope you find the joy wherever you can. The journey to adjusting your life to accommodate what can often be ever changing and sometimes ever-increasing physical limitations is not an easy one. However, that journey can also open your heart and mind to much creativity as creativity is what it may take for your true soul and true self overcome the pain and discomfort on the-not-so-good days and reclaim your life one day at a time. My wish for you is that you relish the good days, are able to adjust your life and expectations on the not-so-good days, and enjoy each and every day as best as you possibly can.
    From a fellow creative soul who has been dealt the card of chronic pain as a life-long companion.

    1. Thank you, thank you, for this kind and thoughtful comment. That is the hidden blessing behind chronic illness — it forces you to appreciate every well moment you have and find joy in the littlest things. I’m sorry you’re in the chronic pain boat too but it sounds like you have a healthy outlook. Wishing you much health and joy right back! xoxo and big big hugs

Leave a Reply

Your email address will not be published. Required fields are marked *