Why I Don't Feel Like Celebrating Father's Day as a Dad With a Chronic Condition

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Father’s Day is looming. It’s the first one I’m celebrating since reaching a definitive diagnosis of fibromyalgia, a chronic condition involving chemical and hormonal changes that result in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleeping, low energy and so on. But it’s been three years of challenges and a year and a half since I enjoyed a single pain-free day.

I’m hating having to “celebrate” Father’s Day. I’ve always tried to be the best dad I can be. Having two girls, now 12 and 13 years old, I often can’t immediately relate to them as compared to boys. But I’ve always tried to understand their world. This has involved playing with Barbies, dealing with middle school girl drama, learning pre-teen fashion, allowing the oldest to go on a first date without buying a gun to clean, participating in a spa day makeover…as well as dealing with the universal things, such as patching skinned knees, attending every game and recital, helping with homework, not “getting it” because I’m old and listening to music that’s often awful.

I’ve also tried really hard to create opportunities for my kids to discover the world, and in the process to learn about themselves while also evolving. I’ve always been pretty physical, and it’s often been through challenges that I’ve grown. I’ve tried to carry this over to my daughters, and it’s led not only to moments in which I saw them grow, but to some wonderful memories that I’ll carry for the rest of my days.

family of four riding on horses

Fibromyalgia has affected all of that. I haven’t been able to proactively construct events and experiences for my kids like I formerly could. They won’t complain about spending a lot of time at the beach – it’s fun, but not exactly a big growth opportunity that helps provide the skills they can draw upon later in life. So, while I’m not suddenly a horrible parent, I’m also definitely not the one I was. That hurts terribly, especially since my medical reality is that I can never fully get back to where I was.

Father’s Day celebrates dads’ contributions to families. But right now I’m trying to reinvent how to do that, how to be more than I currently am while learning to accept I’ll never fully return to where I once was. Given that I’m currently flailing and frustrated, it’s difficult to feel as if I’m earning the accolades. In fact, it feels like an unintentional highlight of my newfound shortcomings.

As a guy, I know I fall victim to cultural expectations that I just silently suck it up. But I love my kids so intensely, and I can’t physically endure the things we used to do, or even some other things I might otherwise try; I can’t merely tough it out. So instead of soldiering on, I’m sitting here, feeling like a failure despite the Father’s Day cards that would say otherwise. I know I’m unduly hard on myself, but I get one shot at fatherhood. Unlike golf, there are no mulligans.

For me, there’s no silver lining to this; no “look at the bright side…”; no “one door closes and another opens” to foster optimism. Time keeps ticking. The girls keep growing. I keep trying, and probably getting enough right that I won’t mess them up too terribly, despite the inevitable stories to the contrary. (“Dad, remember when you ripped the band aid off my knee and I screamed?”)

But, alone with my thoughts, the two most prevalent ones are that sometimes bad things happen to good people, and that, whatever my results, my love for my kids means I’ll never stop trying to be the best dad I can manage to be.

Follow this journey on Rock Hopper Life.

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How Starting a YouTube Channel Helped Me as I Struggled With My Health

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My name’s Dean, and I have fibromyalgia, ankylosing spondylitis, a sliding hiatus hernia, my right wrist feels broken and oh, I’m pretty resistant to pain meds. Yes I would like to sit down, and no I’m not yawning because you’re boring. Nice to meet you.

That’s how it feels when I have to introduce myself, amongst the stares of pity, and the occasional “what have you done to yourself” line of questioning – when you really can’t be bothered to go through it all with a stranger, so I tend to stay at home quite a lot. This in part is also because my legs don’t work well enough to go out on a jolly, and falling head first into a rose bush thanks to my knees giving out is a hoot for onlookers, but a nightmare to get thorns out of the beard. Mainly I really hate the questions, the intrusions, and the explanations – and I feel bad for that. Some people really do care, but please don’t make me go through it again.

I do have a couple of rather snazzy three wheeled trike mobility scooter affairs, and do use them when I have to leave the sanctity of my cave. Yet, the questions still arise with a side helping of someone much older than I, opening – and holding – a door for me to shuffle through stick in hand at the post office when, it “should” clearly be the other way around. It’s just embarrassing – although not head in a petunia bush embarrassing, it still doesn’t make me feel great.

My choice is to not go out in the big wide world unnecessarily, and instead spend quality time with my wonderful and supportive wife, and brilliant old, arthritic, and dribbley spaniel.

A good plan until my good lady has to go to work, and the old spaniel isn’t fussed about chasing a ball around the garden or having snuggle time, preferring to lick her paws and fall asleep in the sun. This is the time I find it hard.

When my illness first began to really take hold I fought it for as long as I could, but the chronic pain and fatigue eventually got the better of me. It made me give up my day job and it was then I realized there was a choice to make, a path to decide upon where one road is easy but could lead to a lot of dark clouds, or a more challenging path that would be mainly rainy, but have intermittent sunshine. I chose the latter. I chose intermittent sun.

I had previously wracked my brain for what I could do that didn’t need much movement, that I could do sitting down, and wouldn’t make a difference if I randomly nodded off or couldn’t quite manage it on any given day after work.

I ended up creating a YouTube channel for something I was passionate about.

It was a hobby, and something I could focus on rather than sitting in front of the TV in a grumpy mood, comfort eating.

When my “normal” life with it’s 8 a.m. – 6 p.m. day job came to an end, I can honestly say my YouTube channel (as well as wife and spaniel) was a haven for me. A creative workspace where I could set myself challenges – learning a new piece of software, starting and/or finishing a piece of content, or even prepping for a video for the future all gave me a goal. That was what spurred me on to get out of my bed 19 out of 20 days – even if it did mean rolling onto my front, getting my legs on the floor and pushing off the bed using my face because my ankle, knees, and wrists had decided to “play up” that day.

Amongst the embarrassed feelings of being in public with the shuffling, wincing, and occasional whimper (I didn’t know my body could make my mouth make that noise by itself – at least without checking with me first), I could create something where most people wouldn’t know I had an issue, and could be “normal,” for want of a much better word. I hate being disabled with a chronic illness (nobody has it for a giggle after all), but this format gave me a chance not to feel like the odd one out, or be forgotten about in social gatherings, or have to explain why I have my face in a conifer and a couple of buckled legs.

As time passed I spent more and more of my energy into building something I was proud of, not “good for someone with a disability” but great (in my opinion) in the wider context, where I could stand amongst my more able-bodied peers and be proud of my accomplishment. This feeling of achievement in it’s own right, not against adversity, not inclusive of my illness, but an success in it’s own right felt – and still feels – amazing.

Now, a year and a half on, I’ve taught myself a plethora of new skills in photography and cinematography, presentation, lighting, editing and more, and I’m still learning and it feels great. Not to mention, when you have those nights of insomnia, there’s always a YouTube video or website begging to teach you something new, so it passes the time away quite wonderfully. I’m also yet to fall over head first into Mrs. Jenkins Chrysanthemums down the road, so the virtual world definitely has it’s advantages.

What I didn’t expect through this journey was to have essentially a blind support network, random strangers enjoying the content I put online, egging me on and letting me know I did a good job. Often unaware of the fight I’d had to get into my studio, the extra cushions in my chair to support my back, or the fact that I’d recorded the same thing seemingly 894 times just to get my words out in the right order thanks to a foggy brain. This unknowing band of subscribers were instrumental in getting me out of my hermit’s nest, and to conventions and gatherings. They didn’t press me into it, how could they? They didn’t know. But, rather than just the desire to work out how to create a smooth transition from my face to a product shot, or how to edit my sound in post production to hide that I completely forgot to turn on my mic and ended up with terrible sound from the camera mic, I had the urge, the desire, and the will to get my broken self to conventions to meet these fine bunch of individuals that had unknowingly inspired me to “pull myself together” and get out into the world.

Am I famous? No – in fact “hell no.” I’m not sure what comes way after “Z-list,” but I imagine if you pulled out the dictionary there would be a picture of me there. It’s never been about that. It’s been about creating something, focusing my energy on to something positive and not how horrific I feel. It’s about realizing that while my previous life may not be an option, I can adapt and create a new one by still learning something new, setting goals, and feeling damn good about myself when I’ve achieved it. The fact that I have some wonderful people that enjoy what I do is amazing, and at these events, I’m lucky enough to shake some of their hands and tell them I appreciate them. That to me is golden. They’ll never know what it means to me, but it is the cherry on the cake. The acceptance that while I may be a different Dean from my previous self, I’m not on the scrap-heap. I’m still productive, and can still contribute something positive. It’s even given me the confidence to publicly talk about some of my challenges and share my thoughts in the hope that it may help someone in the same boat I used to be in.

This chronic illness is a bitch, there’s no getting around that. Dealing with horrific pain, body parts not working, and often all without warning, all adds up to a pretty difficult way of living. But, if you can find something you enjoy, something that pushes you to keep learning, keep achieving, then I guarantee you’ll be in a much better place than sitting on the sofa at 3 p.m. in the afternoon under duvet watching Judge Judy.

There will always be days when you need someone to open the milk or lift the kettle, the days when you’ll get a face full of shrubbery or have a door held open for you, but they are a hell of a lot more manageable when you know that you aren’t just that helpless wobbly individual, affected by chronic illness. You’re still a creative, passionate person who’s in control of their future still and refusing to give in.

You know what, when on occasions you do have that duvet day with a packet of chocolate hobnobs and the black and white films on TV, it’s a treat – not a lifestyle choice. Don’t give in to it, find your passion, interest, hobby, and run with it (figuratively of course) and get out there to make yourself heard.

Illness and disabilities are way easier to deal with once you accept it doesn’t define who you are.

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Thinkstock Image By: kirill4mula

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How Chiropractic Care Has Helped Treat My Fibromyalgia

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Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication or starting a new treatment.

“What’s the best kind of doctor to see?”

Oftentimes, I see this question posted in a large fibromyalgia group on Facebook.

Most people tell the original poster to see a rheumatologist. However, I have a different suggestion. After ruling out more serious problems, why not see a chiropractor?

Fibro patients are typically referred to a rheumatologist. These specialists treat conditions involving pain, such as arthritis, bursitis, tendonitis and fibromyalgia. They prescribe medications to alleviate the symptoms.

I know some medications can lead to a better quality of life, for some people. But sometimes they can cause serious side effects. So I’ve decided to go another way.

Chiropractors also treat pain. They specialize in pain. If pain didn’t exist, they’d go out of business.

 

Right up front, though, I need to point out that I’m not a medical doctor. I can’t give medical advice. Everything you read here is my personal opinion only. It comes from my own perspective of treating my widespread body pain naturally, without drugs.

Were there times I wished a drug was available, to banish my pain for good? Absolutely. However, I know this isn’t realistic. So instead, I decided to place my bets on natural medicine. Seeing a chiropractor was one of the best things I ever did.

Right now, thanks to prayer and a slew of natural remedies, my health is much better than it used to be. I can do a lot more. I have more energy. I’m in much less pain. But I’m not cured. Every now and then, something comes up. Last year, it was excruciating upper back pain.

My homeopath prescribed a few remedies for this troublesome symptom. They didn’t work. Neither did essential oils, my “go-to” pain remedies.

So I went to see a highly recommended chiropractor. I think it’s important to find a good practitioner. If you don’t know of one, maybe someone at your local health food store can point you in the right direction.

My chiropractor spent an hour with me at the first visit. I’m convinced he belongs to a profession that doesn’t get enough respect. Chiropractors are highly trained medical experts, taught to heal without drugs. This doctor took a thorough medical history and then did an examination. (I didn’t even have to take my clothes off and change into a hospital gown.)

Looking at my spine, he noticed my neck was out of place. This, he determined, was the cause of my pain. Even though I felt the problem in my upper back, the root cause was in my neck.

My chiropractor gave me the choice of manual adjustments versus adjustments using a little punch-gun type of device. I chose the latter, since it’s supposed to be good for people with more sensitive bodies.

The treatments caused no pain. Actually, they felt kind of good. I had the sense I was in very good hands, and that my back would be fixed.

It was. After just eight sessions, my chiropractor said, “Now it’s time to turn you loose.” This nagging and infuriating pain hasn’t returned. I’ve had other aches and pains since then. But not in this part of my back.

On the wall of my chiropractor’s office, is an illustration of the human spine. It shows how this part of the body would look if it didn’t have skin. It also clearly explains how the spine is connected to every organ of the body. If there’s a misalignment, our body suffers. Correcting this can lead to better health, is what chiropractors believe.

As I mentioned earlier, I don’t think chiropractors get enough respect. These doctors study for four to five years, much of it spent in clinical training. They know so much about the human body, but from a different perspective.

Are there bad chiropractors? Yes, I’m sure there are, just as there are bad medical doctors. The trick in any discipline is to find an honest and competent professional, one who has your best interests at heart.

I’ve noticed that chiropractors tend to know a lot about nutrition. So, in addition to adjustments on your spine, these doctors can give general wellness advice. They can also recommend their favorite supplements, specifically designed to reduce inflammation naturally, without drugs.

I know this might sound as if I’m getting paid by a chiropractic organization to write this article. But I’m not. I’m just really happy with the care I received, and I want to tell others about my experience. Depending upon your state, chiropractic visits may even be covered by insurance.

In the interest of full disclosure, there is one drawback to chiropractic care. One is that you may feel a temporary increase in pain following your visit. I know I did. This seems to happen especially during the first visits.

My chiropractor calls it “retracing.” It’s similar to what happens in homeopathy. After taking a homeopathic remedy, you may notice you feel worse for a day or two. The troublesome symptoms you’re trying to get rid of may get more intense.

I’ve used a lot of different natural remedies and healing methods. So, for me, I see feeling worse after treatment as a good sign.

Retracing may not happen with everyone. But it did for me. I didn’t mind, because I knew good things would follow.

Whether you should see a chiropractor to treat your pain naturally is a question I can’t answer. This type of care is not for everyone. Some people are definitely more comfortable sticking with mainstream medicine. But if you’d like to try something different, my experience with chiropractic care has been positive. That’s why I’ll continue to tell people about this unique form of healing.

Follow this journey on Organic Palace Queen.

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Thinkstock photo via ChesiireCat.

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To My Boyfriend: Please Don't Give Up on Me and My Fibromyalgia

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Dear boyfriend,

You have done such a great job at making me feel loved lately.

The problem is fibromyalgia can make it really hard to love yourself. I need you to understand some things I think have you confused lately.

This flare has been hard on us.

I want you to know I’m not neglecting my pile of clothes on the floor. It’s growing not because I’m feeling lazy, but because after I do the dishes every morning I need to lay back down for a while. My body is tired.

 

I want you to know I feel like I’m failing you and I’m failing myself each time I have to climb back under my heating pad while we’re supposed to be cuddling.

I want you to know I hate this kind of attention. I don’t do this because I want to be coddled. I know you can’t see it, but the pain is real.

I want you to know I beat myself up for not sticking to my diet and not hitting the gym regularly. I’m afraid I’ll become ugly to you. I’m afraid I’ll begin to look on the outside the way I feel on the inside.

I want you to know that even though I have spent a lot of time tucked away in a different room, I still love you the same as I always have, if not more, for the simple fact that you are beside me throughout this.

I want you to know I am not giving up, I’m not “playing dead,” I just have to cope for a while.

I want you to know my anger towards you isn’t because of you. It’s because of the pain, and I’m sorry.

Please don’t give up on me, I’m trying not to give up on me too.

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Thinkstock photo via gpointstudio.

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How Yoga and Meditation Have Improved My Life With Fibromyalgia

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The past seven years or so I chose to adopt a consistent radical self-care routine. It evolved from the drill sergeant approach I began with – the all or nothing routine – into a much more forgiving space for me to just be with myself. When I began, I did yoga or meditated or exercised to change how I was feeling and if I didn’t feel better afterwards, I classed myself as a failure. I felt guilty for still feeling shitty even after applying a myriad self-help techniques to my situation, so I’d quit and try again a week or so later when the fatigue subsided or when the next mini-crisis or flare-up occurred and needed to be addressed. Now, I take a much more light-hearted approach to it. It’s slow and consistent, and that’s the difference.

woman practicing yoga

I have followed Sara Avant Stover’s book, “The Way of The Happy Woman,” the past year or so as I relate to her use of Ayurvedic principles as an Ayurvedic Therapist myself, especially those she recommends within the yoga practices, specifically created for women to attune to their cycle and that of the season. As fibromyalgia causes hypersensitivity, I am pretty sure this hypersensitivity is not only applied to pain but to all feelings, seasonal changes and hormone fluctuations within the body – the latter I have found to be true.

woman practicing yoga at home

But what can we do to help our body and mind process the pace of our daily lives, chronic pain and difficult situations thrown on top? We need to build up a savings account of awareness and embodiment, not just apply them at the time of the flare-up or crisis. If you do not have a savings account, there is no time like the present to start. Even if it is during a crisis, a positive effect will occur if you apply a mindful salve – maybe it’s a few breaths, maybe it’s mindful practice of a musical instrument or even letting yourself cry. c

We see mindfulness advertised everywhere now on TV, social media, apps, in magazines and online. I, like many other chronic illness thrivers, do my best to be mindful when I can and have to let the rest fall away for now. But I’m always open to trying something new. That’s why I got excited this week when some new resources were kindly shared with me from another person with chronic pain. One is that of the Beaumont Hospital website. They have relaxation meditations, active muscle relaxation techniques, autogenic training, body scans and so much more! If you are bored of your mindfulness routine or are curious about different techniques, I highly recommend taking a few minutes to browse their selection and see if one appeals to you.

woman practicing yoga next to her dog

The other shared by Chronic Pain Ireland is a free course that is coming up thanks to The Centre for Pain Research at NUI Galway, with the support of the Health Research Board. It is currently recruiting people with two or more chronic health conditions to take part in a research study. The Acceptance and Commitment Therapy (ACT) trial will provide eight online sessions to people in the comfort of their own home. At the moment, such supports are scarce and generally aimed at the self-management of specific chronic conditions, such as diabetes or chronic pain. The free online sessions in the ACT program will focus on values and goals that are individual to each person in the trial. Participants will be provided with instructions on a range of activity-pacing techniques to encourage more consistent levels of activity from day to day.

(For further information, you can contact the research team at the Centre for Pain Research, NUI Galway: email [email protected] or phone 091-495832. GPs or physiotherapists who are interested in referring suitable patients to the trial can also use these contact details.)

woman wading in the ocean

While yin yoga and meditation are my main medicines for fibromyalgia, they’re not the only things I use to soothe it, but they do help reset me every morning. Especially with chronic insomnia – that many of you will be able to relate to – yin yoga is more refreshing for me than my sleep. I noticed this at the yoga and meditation retreats I stayed at in the far east too. The more we practiced, the less sleep we needed, and a 4:00 a.m. start became the norm for us, whereas now I’d be lucky to be asleep before 4:00 a.m.

woman practicing yoga at home

Luckily for me my practice has allowed me to return to work part-time this year, but we are all different and it may not be the case for everyone. I’m completely aware of this – I’m just noting what’s helped me so far. I by no means have returned to full capacity, but I have grown and feel this to be a far more valuable achievement (take your wins where you get them). It didn’t happen of my own accord either, but by connecting with my family more authentically and with support groups and therapy that have allowed me the opportunity to learn from others, get over myself a bit (still working on this) and out of this very slow-burning practice, a love and respect has appeared to help me choose more wisely the people I spend my time with, the things I will put my body through and an inkling for the better person I want to be in this world to help others.

photo of woman wrapped in blanket next to photo of woman in a studio

If you want to share your own experience below, I’d love to hear from you or leave a link to your blog if you want to share your own story.

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.

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How to 'Beat the Heat' This Summer If You Have Fibromyalgia

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Do you have problems regulating heat? Are you sensitive to weather changes? Does the heat make you sick?

Many people with fibromyalgia find the better weather usually means less pain, but they find themselves with a new problem: the heat makes them very, very sick!

Unfortunately, that seems to be a common problem.

Fortunately, we can do things to keep ourselves cooler, starting with our homes. If you don’t have central air conditioning, it is probably worth the small investment for a window or portable unit.

Keep your bedroom cool, even if just using fans. Having somewhere you can sleep is one of the most important things you can do. Getting a restful night’s sleep is challenging enough. Trying to do it when you are hot is miserable!

You can find other tips for cooling your home here.

Once our house is cooler, we are halfway there!

 

Take special care to use sunscreen. Some medications might make your skin more sensitive to the sun.

But we can’t stay in our cool and hopefully air-conditioned houses all summer…not if we want to enjoy it, even a little bit! So, what can you do to help keep cool this summer?

– Be picky about the time of day. Avoid being outside during the “hottest” parts of the day, usually between 11:00 a.m. and 4:00 p.m. If you have a choice, spend these hours indoors!

– Choose your clothing wisely; light-colored, loose and breathable clothing will be cooler. Wearing a hat, especially one with a wide brim. This will protect your face from the sun. Sunglasses (polarized) will help to protect your eyes – a necessity if you get migraines.

– Stay hydrated. If you feel thirsty, you are already dehydrated – or that’s what I have been told all my life. The minimum you need is eight glasses a day, more if the temperature is higher and you’re sweaty! One of my personal favorites is ice water with lemon, but you can infuse water with all kinds of fruits!

  • Make it a habit to have a reusable water bottle with you whenever you go out.
  • Something I learned from one of the many times I have had heat exhaustion, is to make sure to include something with salt to help balance electrolytes.

– Make sure to eat something! Save the heavier meals for cooler days, and stick to light and refreshing choices. These are the perfect days for sandwiches, salads and fresh fruit. Outdoor BBQ-ing is another great option! Or just order in.

Some Great Tips…

I recently asked my family, friends and a Facebook group I love what tips they had to “beat the heat” this summer and they had some great ideas!

Plenty of people choose to stay indoors; a general agreement was the need for A/C.

And a whole lot of people said they spend the time in water…either a local pool, the beach or a lake. The cool water is definitely a favorite!

Some other ideas included…

“Use a spray bottle filled with water and a few peppermint essential oil drops, spray on skin and it will cool you down.” One I didn’t know, and am looking forward to trying (I mixed in five drops to about three ounces of water, but it’s raining today.)

“I take showers to cool off – really helps before bedtime,” “running water over my wrists and feet” and “going to bed with damp hair” were a couple other great ideas!

“Cold compresses” was another, either using a regular damp facecloth or towel (put the facecloth in a Ziploc in the freezer for drip-proof version).

“Cooling cloths” from a store (I found some at my local Winners store and Amazon online). You wet it, wring it out and it stays cold for hours and doesn’t drip and get you all wet. Perfect to take anywhere, even to bed! Using one on the back of your neck can help cool you down.

And if you have a family, spend a day at the water or spray park. Jump in when you’re hot, sit in the shade when you’re not…and spend some quality time with the “little ones.” Take a picnic.

And a Couple of Fails…

I have heard of people putting sheets and pillows in freezers before bed for a more comfortable sleep… I can see the pillow, but by the time I remake the bed with the sheets from the freezer, those sheets wouldn’t be cold anymore!

A friend suggested eating spicy food, as it apparently drops your body temperature and makes you sweat. Personally, I don’t need any help sweating, and spicy food doesn’t agree with my tummy, so nope, not for me!

Do you have any tips or tricks to beat the summer heat?

Cheers,

Chelle

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Thinkstock photo via Chitra Tatachar.

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