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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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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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6 Things I Have Learned From the Emotional Toll of Fibromyalgia

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I was recently diagnosed with fibromyalgia after almost two decades of trying to navigate through unexplainable chronic pain and fatigue. Although there are a lot of lifestyle changes that will come with the territory, you will also experience a lot of emotional ones, too. Here are some of the things I have learned along the way.

1. You May Be Unfairly Judged and/or Discriminated Against

From doctors, your workplace, family and even closest of friends, you might find yourself being made to feel like you are a liar, seeking attention or not trying hard enough to be healthy. It’s hard for some people to understand or be empathetic about things they truly do not understand or have a realm of experience to draw from. People with invisible chronic illness have encountered an endless array of naysayers along the way. You are not alone.

2. You May Lose Relationships With Friends and Possibly Family Members

Regardless whether you choose to explain to people what you are going through or spare them the details, altogether your friends and family will likely continue to expect you to be present in their lives and their special events and occasions along the way. They may not understand the pushback you experience from forcing yourself to be present in their lives. They may not understand your lack of presence does not mean you love them less or simply do not care. They may not understand how difficult it is for you to face each new day in your life and how hard you fight to not lose hope.

3. Your Marriage and Family Relationship May Be Strained At Times

Having a spouse or parent living with a chronic illness may take its toll on your family. Your spouse could be forced to take on the weight of being both parents to your children and the responsibilities that may have at one time been divided up between spouses. It might be difficult for young children to understand why one parent can be active and present in their lives and the other parent is not.

4. You Must Learn to Stop Feeling Guilty

Your friends, family and co-workers may tell you that because you are no longer dependable and usually absent, you have caused unfair hardship to them and others. They may not understand or know what you go through each day, what is going on with your health or why you can no longer function normally anymore. As your health and life begin to unravel and you can no longer lead a normal lifestyle, be part of the workforce, attend church regularly or be present at special events and occasions, people may become insensitive and accusatory towards you before altogether distancing themselves from you. It can happen with even those closest to you and the best thing you can do for yourself is to stop feeling guilty for what you cannot control and continue to love them and cheer for them from a distance, even if they do not know you do.

5. You Must Love Yourself

The emotional toll that living with a chronic illness can have on you after the initial onset can be devastating to some. As my health deteriorated rapidly and seemed to spiral out of control, it became difficult for me to want to live. If you begin to question whether or not your life is worth living anymore or if things will be better if you simply don’t wake up anymore, you need to seek help immediately. Not only are you worthy of love, you are worthy of life and need to learn how to live the best life possible despite what you are going through.

6. You Are Not Alone

Even though isolation does come with the territory when you are dealing with a chronic illness, you are not the only person in this entire world who is going through what you are going through. You may think you are, but it simply isn’t true. There are other warriors out there – you just haven’t come across them yet.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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A Thank You to My Husband During My Fibro Flare

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Dear Husband,

The past few months have been very difficult for me. I have had my fibromyalgia flaring up constantly, I have been sick, and my post-traumatic stress disorder has been through the roof with anxiety attacks, flashbacks and fear. All throughout, you have been helping me, right by my side. When I was hurting too much to walk you pushed me in a wheelchair. You helped me walk if there wasn’t a wheelchair available, you put IcyHot on my back and legs, you rubbed my back, you got me pain medicine and my muscle relaxers, you brought me food when I couldn’t get up from bed, you’ve helped me dress myself and bathe, and you have never complained.

When I was too scared to do anything, you comforted me. You brought me coffee, put on funny movies or shows, talked to me through anxiety attacks, got me my anti-anxiety medicine, stroked my hair, held me, joked with me and reminded me you would protect me from harm.

When I was sick you helped me remember to hydrate, to take my medicine, you kept me warm and made sure I was getting enough sleep, you went to the store to get medicine and bought me chocolate to cheer me up. You truly meant your vows when you said “in sickness and in health,” and I could never tell you how much that means to me, husband.

Thank you.

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