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How I Simplified My Routine So I Could Live a Normal Life With Fibromyalgia

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When you live with conditions such as fibromyalgia and chronic fatigue syndrome, your entire life gradually gets an overhaul. Although you are the person who has been diagnosed with a chronic illness, it can affect your entire household and your family experiences those changes along with you.

I eventually came to depend on my husband more and more as my health quickly deteriorated. He did the laundry, washed the dishes, cleaned our home, cooked our dinner, took out the trash, took the dog outside, helped me shower and bathed our baby. He was now coming home to two additional full-time jobs. My marriage relationship was still a strong one but obviously there would be times when my husband needed rest and relaxation and would not be able to get any at home. It took quite some time before I was able to push myself to do simple things that I would have been able to do before my health worsened. I decided that I was going to be more active in pursuing a life of normalcy.

I invested in a slow cooker so that I could eliminate one less thing my husband had to do when he came home from work. I purchased food storage bags and containers of different sizes to help me make snacks and meals ahead of time. I would figure out meal ideas that would have left overs for at least two or three days. Whatever I could do the night before I would do so whenever possible.

Completing house chores was another area that I had to figure out how to do with limited mobility. I remember sitting on the couch one day and pushing the vacuum back and forth as much as I could while still sitting. I would even drag a computer desk chair from room to room to sit in while completing chores. I purchased large decorative storage bins to clear up any areas of clutter, to store our child’s toys in and even to pick-up all the things around our home that needed to be put away or returned back to the room those things belonged to. I learned my own system for folding clothes. I would separate clothes by person and put them into different laundry bags and place them in front of the appropriate dresser. If I wasn’t able to fold and put away the clothes myself, my husband would pick up the slack for me.

When our child began to walk and eventually be able to talk, it was hard for our child to be able to understand why there were some things that could be done with dad but not with mom. From a very early age, our child instinctively knew there was a difference in the activities that could be done with either parent and it was and still is heart wrenching at times. Although there are plenty of children’s books in our home, I often have to use a phone or tablet application that contains narrated stories. Our child especially loves the bedtime ones. When bath time came for our child, my husband would make the bubble bath and I would sit and monitor our child while in the bath. When it was time for our child to be washed up, my husband would return to do so and then we would both help get our child ready for bed.

I unfortunately did have to give up participating in most social activities in order to reserve my energy and not set off additional pain flare-ups. Once you begin to connect the dots to which activities or tasks causes more harm than good to your health, you will learn to plan ahead before an activity and make much wiser decisions for yourself.

I finally began to find ways to simplify my routine and be able to meet the needs of my family to the best of my ability. Creating a routine that can enable you to contribute to your own care and the care of your loved ones can empower you and teach you how to manage your health conditions instead of allowing your health conditions to manage you. All you have to do is figure out how to simplify your life wherever possible and I think you can and will be able to live a life of normalcy.

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Lead photo by Thinkstock Images

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17 of the Worst Symptoms of Fibromyalgia (and How People Deal With Them)

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Fibromyalgia manifests itself in different ways for different patients, but most can agree that all the symptoms are life-altering. It’s not always clear how (or if) they can be treated, and the physical challenges can all too easily turn into emotional challenges as the things you used to do become more and more difficult.

We asked our Mighty community with fibromyalgia which symptoms they consider the worst and how they cope with them. If you’re experiencing these difficult symptoms as well, check out the strategies they use, and don’t forget that you aren’t alone in dealing with the hardships of fibromyalgia.

Here’s what the community told us:

1. “Never-ending fatigue. I’m still trying to figure out what helps, but so far, certain homeopathic medicines are working. My online support group helps tremendously! And there’s always Netflix. Cuddles from my cats help, too!”

2. “When I feel like I’m walking through quicksand. The only thing that helps is to take a break for a day and rest.”

3. “To me, the worst part of fibro isn’t the pain/stiffness or the constant fatigue, it’s my non-existent social life and constantly feeling alone/misunderstood. Even on the awful days, I always find some way to cope or I just lay in bed and whine to my pets. But it’s hard to find a way to ‘cope’ with the loneliness and the depression that follows it.”

4. “The worst is the joint stiffness and joint pain I get, the nausea, and being tired all day and then not being able to sleep at night. I’m a huge fan of the heating pad, and keeping hydrated, and taking my days one day at a time.”

5. “The whole body stiffness as if you’ve worked every bone in your body the day before. No way to deal with the pain, but working out does help…. lessens some of the stiffness. I really notice it more when I don’t do cardio. I tell my family I work out to lose weight, which is true, but it’s more so to help with the stiffness.”

6. “When something always hurts, it’s hard to focus. When you never get good sleep, getting through a work day without a nap is incredibly difficult. I use essential oils to help with both. I make sure I get the best sleep that I can and rest when I can.”

7. “Pain in every part of my body! Some days it even hurts to breath. I pamper myself on those days and do only what is necessary. I save a book I know I will get lost in reading, have a few naps, and try to relax my tight muscles to minimize the pain. I cuddle and pet my dogs a lot, too. I live by myself in the Minnesota up-north woods far away from the noise and stress of living in a city. The quiet and solitude help keep me relaxed.”

8. “For me it’s the cognitive issues. I can hide the pain, but when I can’t form words or get lost in familiar places and see the look of pity on faces of others, I want to cry. I used to be confident and outgoing. Now I just want to hide away.”

9. “Worst symptoms for me are the random hand twitches. I deal with them by making jokes.”

10. “Not having an internal thermostat. I’m rarely just a comfortable temp. Always hot or freezing! I try to dress with layers and know where fans and fresh air are when possible!”

11. “Waking up achy like I hiked 20 miles, feeling like I didn’t sleep at all, and feeling like my head is stuck in the fog. It feels like I’m jet-lagged all the time, walking through quicksand with the body aches of the flu… I try to have a positive attitude about the good parts of my life and manage the best I can.”

12. “The inconsistency. One day you may be feeling relatively good and the next day you are unable to get out of bed. Fibro doesn’t care if you have things to do that day; if it is a bad pain day, it is a bad pain day.”

13. “The worst symptom would have to be my loss of self. I worked hard for the life I had. I was happy. But now I feel like such a burden. No matter how positive I am or how much I smile, I struggle with the constant removal of independence. I’m not sure how to love or even like what I’ve become. I do have amazing support from my partner, and I appreciate it it more than he will ever know. Time together will make a difference. So will finding new happy moments and places.”

14. “The worst symptom is a specific kind of pain; it feels as though I’m being stabbed, in random order, with a red-hot electrified knife all over my body. There’s no relief. All I can do is rub my feet/hands/legs/arms, curl up in a ball and wait for it to pass.”

15. “I have good days and bad days, but on the bad days it feels like every joint in my body is screaming. On those days I take a nice long epson salt bath with bubbles and calm music; it always helps.”

16. “Fibromyalgia flare-ups are the worst. The pain is unbearable and it is felt in every joint, every muscle, every nerve. The fatigue is overwhelming, and sleep is often kept to a minimum since the pain is so severe. Flare-ups happen because of stress, weather, overexertion, and unfortunately, sometimes there’s no reason at all.”

17. “Feeling alone. I have found a great online community, and I cherish the couple understanding friends I have.”

What are some of the worst symptoms of fibromyalgia, and how do you cope with them? Let us know in the comments.



17 of the Worst Symptoms of Fibromyalgia (and How People Deal With Them)
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How Illness Is Teaching Me to Slow Down and Live in the Moment

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One major thing I’ve learned this year is to give myself grace: to slow down, truly enjoy all of life’s triumphs and challenges and soak in all experiences around me. In this process, I’ve definitely made some mistakes, felt a little misguided by my own thoughts and “wants” and felt taken advantage of a time or two.

However, I’ve also learned that making mistakes is truly OK. In order to grow, we must learn by design. Whether our design or purpose has been pre-approved or not, it is truly important that we are fulfilling those “things” we feel we need to fulfill.

I have a history of always doing too much. As a child, I was constantly playing and working creatively. There was rarely a time when I would just sit and watch a movie or relax and read a book. I was always active, running from one activity to the next, and barely taking any time to soak in what I was experiencing. In my teenage years, I involved myself in multiple clubs, became active on multiple sports teams and found additional side activities to occupy my time. I rarely spent any time at home outside of sleeping at night and always had one if not two or three activities to complete after school hours each day. From practices to meetings and games to performances, I always was doing something. And again, I barely ever took the time to soak in my experiences.

When you ask me about my memories of those very busy childhood and teenage years, I don’t have many. I truly only have memories of times I captured through photograph or video. I’ve always been a photographic and visual learner; even when studying for tests, I would memorize information on pages right before tests to help me perform better as my knowledge was assessed. Nowadays, it feels like my brain has a hard time connecting to ideas and moments. I pretty much have to write everything down or it is usually forgotten. Just ask my husband how many times I’ve repeated myself or forgotten something of importance because he didn’t text to remind me or I didn’t write it down. This is very frustrating for me.

Whether my lack of memory is due to conditions of fibro fog, autoimmune symptoms or a lack of focus isn’t really the point. The point is, I feel that in learning to be busy all the time, my brain also learned how to ignore what is happening in the present. Instead of focusing on what is happening right in front of me, my brain has learned how to multitask, think ahead and plan everything. Even though these can be seen as very positive qualities in some, I feel like, over time, I’ve learned how not to remember. I’ve learned how not to be truly present in today.

So, in my journey to learn more about myself and reflect on how this year has gone, I’ve also learned I must give myself grace. I am not like many others and should not be trying to mold myself into the same mold as everyone else. I’ve learned I must accept myself instead of trying to “keep up” or “change” into what society would like me to be. I need to slow down, take more time to better understand what is going on in life “in the moment” and learn how to stop trying to do multiple things at once. I need to learn how to simplify life.

In doing so, I feel life will only become easier. I’ve noticed that the more I think and reflect on my experiences and better understand my true self, the better I understand how to capture triumphs and conquer challenges. I’ve learned different strategies I can implement and what my body and mind need on a daily basis to be the best version of me I can be. Everyone always talks about goals and dreams and how they wish to change certain aspects of their lives, but with a diagnosis of an autoimmune disease or chronic condition, these goals and dreams can change. Your perspective on life changes and you learn to give yourself grace: to slow down and enjoy the simplest things in life because frankly, even on your best days, sometimes that’s all your body can take.

Give yourself grace. Allow imperfection. And remember to always live in the moment. Those memories are the driving force to see you through your worst of days.

Follow this journey on One Autoimmune Journey.

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The Day I Decided to Shave My Head Due to Fibromyalgia

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I was diagnosed with fibromyalgia about three years ago and I am still trying to find out how to live with this condition. But a massive turning point for me was the day I decided to shave all my hair off my head.

I have a hypersensitive nervous system and so my skin becomes very sore and painful with touch and even clothing. But what is not often known is that many people, including me, feel pain from hair movement on their head. My scalp was constantly red and sore and I couldn’t tie my hair up because of the pressure on the scalp, and even lying on a pillow would move my hair about and pull and hurt my sore head.

So one day I found myself staring in the mirror holding some hair clippers imagining how it would feel to just shave it all off, half scared of people’s reactions and half excited by this daring and bold idea. My pain and annoyance with this hair, which now seemed a burden and only there to please others’ need for me to look “normal,” gave me the courage to go for it. Before I knew it that hair was a pile on the floor.

I had never felt so liberated and free in my whole life. It felt cool on my scalp and that first shower was an exhilarating mix of emotion. My kids said I looked cool and what surprised me is I could see my face in a way I never had before with nothing to hide behind. I felt bold and beautiful. For the first time I had adapted myself for me and no one else. I put my needs first and loved the result. I am different, I am not like other people, I have special needs to be happy and cope and for once I felt proud rather than ashamed or guilty. I was just being openly me, Lisa, the fibro warrior fighting for her life, for a life.

I don’t often explain to people why I shave my hair off and if I do they rarely understand, but that’s part of accepting this life with fibromyalgia. Most won’t ever get it and I’m glad because it means they haven’t had to. What I need to cope in life is for me to get it, to do anything I need to feel that bit better or to cope that bit better. By letting go of other people’s expectations of how I should look, I became a little easier with myself and free. It’s a gift to myself in a difficult life and I hold my bald head up high more than I ever did before.

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Lead photo by Thinkstock Images

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3 Ways I Fight the Isolation of Chronic Pain

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Isolation and chronic pain go hand in hand – there’s no sugar-coating it. Anyone with CP knows we make deliberate choices about our schedules every day that revolve around our pain and energy levels.

For me, work takes up the majority of my spoons for the week. That means when the weekend comes, it’s time to rest, period. This is when a secret side effect of chronic pain creeps in: isolation.

Social Life Reality

Over the years, many of our close friends have moved either out of state or out of the city. If we are going to see them, more planning has to take place which means something else has to give. For example, if we are going to visit with our friends on Saturday night, then Friday night, Saturday (leading up to the event) and even Sunday are spent in rest mode.

This type of planning quickly takes a toll. Many times is just not worth it for me to go through weekend planning in addition to my carefully managed weekly schedule. So we pay the price. I say “we” because my husband is isolated too.

I do everything I can to encourage my husband to go out and be social but understandably, it’s hard for him. He sees his wife in so much pain and all he wants to do is sit with me and cheer me up. Who wants to go out with that guilt? Who wants to go out by themselves and constantly get asked the question, “Where is Puja?”

In the summer, I look outside and see people biking, walking with their dogs, just enjoying life…and there we are – in our house again as another weekend of rest goes by. Us spoonies know the weather has to be perfect too. It’s 19 degrees in Chicago right now – way too cold for me to go out. The same thing applies for super hot days too.

To fight feelings of isolation and loneliness, I rely on a few key lifesavers:

1. Writing. It was during a flare that I had the idea to start writing this blog. I was supposed to be at a conference but was in so much pain that I couldn’t get out of bed. So, I had a brainstorming session instead! I find that as I write, I’m distracted from my pain – I consider it an alternative form of therapy. Plus, writing this blog has connected me to so many incredible people that the last thing I feel is alone. Would you consider writing a blog? What would you write about? If that’s not your style, try to reawaken the poet in you to write a poem for your partner or fill the pages with a story where you are the superhero!

2. Pets. I couldn’t even imagine my life without my bulldog, JZ, in it. He’s not only a love machine, natural heating pad and constant source of entertainment, but doctors say that pets help lower anxiety and blood pressure and boost immunity. JZ keeps me company on weekends when my husband is running all the household errands and gives me a reason to get out of bed. I mean, JZ has to eat!

3. Netflix and Chill. If you’ve been following me for a while, you know I love my Netflix. Rest mode is prime time to binge on the new big hits. I mean, who can feel alone with the cast of “Scandal” keeping you company?

What do you do to stay connected? I’d love to hear your ideas in the conversation below!

This post originally appeared on The Huffington Post.

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What Tomorrow Means to Me as a Person With Fibromyalgia

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“Tomorrow is a new day.” Despite overwhelming evidence to the contrary, there’s hope of waking up and feeling 100 percent better, right? Perhaps that’s a little too optimistic. The reality is living with fibromyalgia is challenging and unpredictable at times. Each day is an uphill battle full of difficulties — silent, yet painful difficulties.

It’s tough to explain a day in my life to those who aren’t actively living with fibromyalgia. Not to mention, there are still some healthcare professionals who don’t believe it exists. As a result, “hiding” is much easier than explaining. 

When your best friend asks you to go on a shopping trip at Target or you’re invited to a family dinner, obliging isn’t as simple as it may seem. Outings are exhausting. Anything outside of the ordinary means a day of recovery ahead. The pain that ensues makes a person rethink those simple invitations. 

What you see on the outside isn’t always what you get. The effort that goes into showering, getting dressed and putting on makeup is similar to a workout for others. That doesn’t include getting the kids ready, planning and preparation. Staying home seems much more manageable than an outing. 

What’s hard for others to understand is that we aren’t actually “hiding.” We aren’t isolating ourselves. We’re simply protecting ourselves. We’re reserving our energy stores for the everyday tasks that we have to perform. We’re conserving our strength. 

In my silence, I’m aching. While “hiding,” I’m in pain. Bare with me. I might say “yes” tomorrow. After all, tomorrow is a new day. 

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