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The Photo That Shows My Everyday Life With an Invisible Illness

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There are many photos I wish I could post about my condition. I want people to understand what it’s like to be chronically ill – to have deep fatigue, brain fog, aches, pains, depression, and a myriad of other symptoms that you have to push aside each day. I put on a smile to hide my weariness that words can’t really describe.

My illness is invisible, which is both a blessing and a curse. An invisible illness, meaning one that ordinary people wouldn’t realize based on your appearance and lifestyle, is a blessing because I can have moments where I pretend to be “normal” and have a regular, healthy life like so many people take for granted. But on the other hand, an invisible illness is also a curse because it becomes so much harder to explain to people about my condition and harder for them to understand that I truly don’t feel well.

So what’s one photo I wish I could post? This one – me lying in bed, exhausted, achy, and unable to move.

They say a picture’s worth a thousand words, and this picture shows a normal part of my life – an occurrence that has happened more times than I can count but is something I rarely talk about. I don’t know what it is like to be able to get through the day without having to lie down.

A photo of the writer, laying in bed.

This picture helps me admit that I still struggle with my illness, despite looking normal and leading a somewhat normal life. This picture helps me validate my illness, reassuring me that it is not all in my head.

This picture helps me share my story with others, encouraging them to realize that chronic illness is a battle I fight every day. Having support and understanding are two of the most meaningful things someone like me could ever wish for.

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Thinkstock Image By: anonymous6059

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10 Tips That Just Might Help If You Live With Chronic Illness

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After a year of living with a chronic illness, I’ve learned you can never fully predict your day, the challenges that lie ahead and how the loss of control that comes with all of that can be very frustrating (especially for us type A personalities!). However, I have also learned there is a lot you can do to place the odds of a good or better day in your favor.

From peace of mind to symptom minimization, the list that lies ahead aims to provide some tips and strategies that I hope will help you minimize your symptoms, give you back some of that control in your life that is missing and most of all provide some hope that it is possible to make each day better, even if it’s in the littlest of ways. My motto is, any help helps! I hope you find this list, in whole or in part, helpful!

1. Fix what you can. So many symptoms don’t seem fixable. But don’t give up so quickly on this idea! For example, my condition gave me constant back pain. I finally saw a physical therapist and he worked wonders for reducing the pain to a near zero level of pain. This “fix” not only helped my back pain but I’m sleeping better as a result now too.

 

2. Accept what you can no longer do as best you can. Sometimes it requires daily focus – or rather, it requires you to refocus on simply doing the best you can that day. Your abilities will vary day to day but acceptance rather than anger and frustration will serve you so much better, as hard as that is some days.

3. Stubbornness doesn’t work. I am adamant that my limitations won’t affect the core aspects of my life. However, I can be as adamant as I want and the reality is I am not being realistic. The reality is it does – I can’t do what I want, when I want – or even at all sometimes. Back we go to acceptance… or at least working toward it.

4. Refusing to quit does work. I will continue to fight for more each day I can because while I’m still not achieving all I want, that refusal to quit attitude is definitely helping me achieve more than if I didn’t have it.

5. Do not be so hard on yourself. We have chronic illnesses. We can’t keep mentally punishing ourselves for our limitations. For me, I always try to do my best at everything I do. Now though, for some specific things, what I know as my best no longer is possible. I have to accept my new best and let go of my old best. And that is so, so hard! It can be defeating and sad – both feelings that are hard to deal with when you are fighting so hard each and every day to make that day better, more productive or less painful. The best we can do is to try to take these self-defeating thoughts off our plate. Our plate is already full enough. Accept and move on as much as possible in the moment.

6. When you have no energy the littlest of missteps can wreak havoc on your emotions. I can’t tell you how many times yet another spill has almost brought me to tears. Just getting some water can seem challenging enough some days. Then to have to clean up a mess. Yikes! Something as simple as a sippy cup with a tight cap from the dollar store can save you from cleaning up endless spills caused by a new lack of coordination.  Test out some solutions to these types of frustrating issues and you can avoid many such emotional moments.

7. Quietness is key! When you are trying to sleep, and finally get to sleep, you need to be able to stay asleep. Do whatever you can to minimize noises that will wake you. Ear plugs, noise-reducing shades, a fan, a white noise machine… Do whatever it takes to minimize the chance of a disruption to that precious sleep time.

8. A lavender spa mister works like magic. While I love scented candles, I’ve never been a true believer that these scents hold any “power” other than being pleasant. However, I do now. The days my spa mister is freshly supplied with lavender drops result in my best nights of sleep.

9. As tempting as it is, when you finally do venture out for some time with friends, don’t forget to keep your schedule or you may pay some harsh consequences. I used to think, heck, I’m having fun, I rarely get to, so I stay out a bit longer. For most of us with chronic illnesses though, you know this is likely a mistake that could cost you two or so days in bed or worse.

10. Take it one day at a time. Lying on your couch all day can feel like an eternity. Try to remember that even though these moments may be painful, you shouldn’t let them consume you. Don’t “what if…” about what this means for tomorrow, the weekend or even your entire lifetime. It’s just a moment… don’t overindulge in the value of that moment. Better moments are always ahead.

Anyone else have any tips? Please share! As I noted above, any help helps when you have a chronic condition!

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Thinkstock photo via Dreya Novak.

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25 'Hacks' That Can Make Life With Brain Fog Easier

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Brain fog is one of the most frustrating symptoms that can accompany chronic illness. When your short-term memory and thought processes are impaired by either illness or medication, it can have a significant impact on your everyday ability to function. You may find yourself missing appointments, forgetting to pay bills or being unable to recall important names, dates or events.

To help those who struggle day to day with brain fog, we asked our Mighty community to share “hacks” that can help make life with brain fog easier. Maybe some of the following can help you navigate through life a bit more easily, too.

Here’s what the community shared with us:

1. “I carry my cell everywhere. It has all my appointments, addresses, mapping system (I sometimes can’t figure out where I am on bad days), phone numbers, to do lists, shopping lists and reminders to pick up my youngest. I would be lost without it.”

2. “Sometimes certain music can help, if my migraine isn’t too severe. Dance music with a steady beat is most helpful to me, but I think different things work better for different people.”

3. “Sticky notes! Seriously, [they] are the best thing ever. I write down phone calls (as I will forget who I’ve just talked to and what they said), to-do lists, things to remember, pretty much everything and then stick them in the appropriate places like on the fridge, computer screen, diary, my desk. Makes life heaps easier and I can throw them away when I’m done. Plus they come in heaps of colors so it helps cheer me up and as they are sticky I can put them pretty much anywhere, making them harder to lose.”

4. “I try to avoid driving on really bad days, if possible, and if I go out anywhere, having someone with me to tell me to grab my purse or (if I leave it at home) to remind me I didn’t bring it when I start freaking out, thinking I left it somewhere.”

5. “I have almost 50 pages loaded on my Safari that I can scroll through to remember what I was looking for/doing.”

6. “I never go to important places alone… doctor appointments, meetings, etc. I need someone there who is hearing all the information so [they] can jog my memory later, keep me accountable or help me remember future dates.”

7. “I use Cozi. It’s a family calendar app that both my husband and I can add things to. In addition to the calendar it has to-do lists we can assign to a specific person, shopping lists and a notepad. I can use it on all my devices and husband’s work calendar can link to it so I know where he is (he travels a lot).”

8. “I put things in places where I know I’ll see them to remind me to do something, because even though the phone sets off an alarm I could not remember what I was supposed to do.”

9. “Repetition, repetition, repetition! I’m constantly talking to myself. At the store if I need milk, I say milk with each step as I walk to the aisle.”

10. “I ask for printouts of everything: appointment reminders, info that was gone over, meeting minutes, etc. I need a physical copy or it’s likely to be forgotten.”

 

11. “I use my memo pad in my cell phone – often my fingers don’t work the way I want them to so I record voice memos to myself about things I need to remember or things I need to be doing. I listen to my memos when I get home – in front of my calendar – so I can get it written down.”

12. “Photo capture everything I can or take a picture of it. I go through my photos for the day in the mornings when it’s not full of sound in my house.”

13. “If I’m with someone who doesn’t [have] brain fog, I’ll ask them to remember something for me I’ll need to remember later.”

14. “Use games to stimulate your brain. I do logic puzzles and play video games, but crosswords, jumbles, word games like Catchphrase or even chess can help with exercising your brain and sharpening your cognition/memory. I also take notes or use spreadsheets when I play video games to help keep track of what I’m doing.”

15. “For the brain fog of zoning out and not remembering where I am or what I’m doing for a few seconds, I just take a deep breath and close my eyes for a second or two and try to let the words come to my brain instead of panicking because I can’t remember exactly what I was doing. Sometimes I have to move along and then it will come back to me; sometimes I never remember.”

16. “When I think of something during a conversation and I can’t say it right then, I hold my finger (yes, I literally just hold my pointer finger with my other hand) until I can say it. It actually does help me to not forget.”

17. “These days I use a paper planner. I used to use my phone, but I’d forget I had the note. I use the Ultimate Diary Planner which allows me to plan over the course of a week and mix my to-do lists with priorities and appointments without being too prescriptive with it.”

18. “I repeat my schedule like a mantra often during a day. Today is Monday, I am doing X Y Z. Tomorrow is Tuesday, I am doing A B C. Wednesday I am doing 1 2 3.”

19. “Cleaning my room helps me to organize my thoughts. Because when it’s a mess around me, it’s a mess in my mind. Seriously, it helps a lot.”

20. “My Lumosity app helps me work on retaining what brain functions I do have and sharpen those skills as much as possible. It’s my proactive way of planning to retain as much autonomy and independence as possible as I get older.”

21. “Repeating stuff helps. I always say someone’s name back to them when I learn it the first time, for example, or if I’m given verbal instructions, repeating them back to the person to make sure I got it right.”

22. “I always turn a light on above the oven if I am using the stove or oven. I forget to turn it off often. If the light is off, the oven is off.”

23. “Write everything down! Grocery lists, appointments, meetings, etc. Even then I still get anxiety about forgetting something important. As far as remembering if and when I’ve taken my meds, I bought a pill sorter shortly after being diagnosed. This has helped significantly to be able to double-check if I’ve taken my meds by simply looking at the container.”

24. “Texting so I can read what they said repeatedly so if I forget when I’m responding, I can go back as a reference.”

25. “Compassion for myself as well as for others.”

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How Taking a Long Mental Health Break Has Helped Me Heal From Chronic Illness

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At the start of the year I made a decision to retreat and hide myself away a little from life. I needed to break the cycle of fight and defensiveness I was in and spend some time on recuperation instead. In reality this meant ending a long-term relationship, moving back in with my parents and spending the vast majority of the year alone.

 

There was a deeper and more practical reason to do this – four years of hospital stays, surgery, never-ending symptoms, grief, anxiety, fear and the loss of all control – but all that is really beside the point! This was a decision I made confidently, following my gut and with a yearning for sanctuary and peace.

About eight months has passed now and so far, I wouldn’t change a thing. I spend almost all my time at home or in the office at my parents’ business down the road, where they pay me to “consult.” (N.B. I’ve learned this year that my family is my fortune.) In the evenings I sit in bed with my computer, browsing the web, depleting Netflix, reading and always attempting to write. A couple of times a month I make plans with friends and spend a few days exhausting myself before it’s back home to retreat again.

Life is slower. Life is quieter, life is easier. Life is predictable.

Yes, there are times when I get bored. Yes, I yearn for fun sometimes and yes, I worry time is slipping away from me. In actual fact though, for the first time in four years I am stealing back some autonomy in my life. I am calmer and kinder to myself and I am learning life can be found everywhere, even here. My social anxiety is still high – I’m tackling that in smaller doses, but my fears and worries about the future are fading. I’m coming to terms with the fact there exists a “Who I Was,” “Who I Am” and a “Who I Will Be” and I’m beginning to enjoy the process of figuring it all out. I believe I’ve found the first step up and/or forward and I dare say, I’m feeling a little excited again. Furthermore, my symptoms are almost nowhere to be found. My pounding, exhausted heart that has delivered me to the emergency room countless times has gone undercover for the time being – it seems we both needed a break, a retreat, a hideaway.

Although I will never be cured of my physical health condition and I cannot fight the truth that one day it will take my life, I have for the first time realized how much more significant my mental health is, especially in terms of defining the fundamental experience of a good life. People talk of taking a Mental Health Day from work… well, I’ve taken a Mental Health Year from life, and it is curing more of my ailments than my medication can.

In a recent conversation with my adventurous, wild and wonderful younger sister, she expressed concern for how I have been living this year. She urged me to push myself more and get myself up and out of this funk I am in. I fully understand in her eyes it probably does seem like a nightmare – her own personal fear of what loneliness, boredom or defeat might look like. For me though, this is exactly the life I should be living right now and I need everyone who loves me to know that. I need you to know I am OK, things are going well and this is right – even more than that, this is working.

It is very hard to be different and it is even harder to live differently. But the life I am living is mine and mine alone and I am learning to trust that once again, I’m back in control of it… and that, well, that is the biggest and best difference of all.

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Thinkstock photo via Anna1000Arts.

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How Chronic Illness Uprooted My Sense of Security

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Security. It is something we cling to, a stabilizer that offers us a modicum of peace and comfort in a world that is in continual turmoil. The placement of our security is as vast and varied as the human race, yet the desperate need for it in our lives remains the same.

In the frailty and unpredictably of life, we tend to place our security in temporal, fragile entities – hopes and ideals and expectations that are not promised to us, and yet we await the assurance that all will be well and remain.

 

Chronic illness has a way of uprooting security. Security found in relationships, in health, in finances and in the future. Slowly, it rips the rug out from under you.

The security of relationships ebbs away as they quietly fade into the background, unwilling or unable to walk with you in your new life.

The security of your personhood and who you were falters and sheds itself and out emerges a new identity, a person who said goodbye to the “I used to be” and became something wondrously and terrifyingly new.

The security of finances and the tangled web of all it touches rocks your world. Often faced with losing careers and incomes, it is painful to reconcile living a life that is given and taken away by individuals who do not know you and who do not walk in your shoes. While new careers and incomes can be carved out of this new life, it still brings a shaky lack of security. The future of chronic illness is always changing, like a horizon whose fragile paintbrush dips and colors the sky with an ever-changing hue.

Unpredictable, chronic illness uproots everything you once held dear. It tests and pushes boundaries and demands a fight, not just for your physical survival, but for your emotional and mental well-being.

Even in our diagnosis, for those blessed enough to have them, there is a waxing and waning of security in those who care for and treat us, in the long, laborious road of tests and pills and therapy and hospital rooms that echo your heartache.

Security, I have learned, cannot be rooted in the temporal foundations of man. No. It must be anchored where foundations do not shake.

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Thinkstock photo via fizkes.

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What I Want Educators to Know About Their Students With Chronic Illness

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Growing up, I had always known teachers as the people at school who would advocate for me just as my parents would. For the first half of my educational career, before my illness, I was lucky to have teachers who aided me in my journey towards my goals. In my mind, teachers had always pushed me to be my best, helped me to learn to take responsibility for failures and guided me. Until I was diagnosed, I never realized there were sometimes teachers who didn’t help students in the way I had always known them too. It became much more apparent when I first became sick.

 

To my high school principals:

I understand and could never think about how hard it is to run a school full of adolescents on the brink of adulthood. Monitoring kids at an age where their world is changing at a fast pace must be difficult and stressful.

I understand I was not above any other student in school – I didn’t want to be.

I hope the next time you come across a student who is facing a major life change such as an illness that you will not assume they have “school phobia” or are trying to get out of classwork. This is a scary time for them, and I hope you can see that.

I hope you learn that sitting them in a conference room and insinuating that laziness and fear are the roots of the problem is embarrassing and humiliating to someone whose life has been life turned upside down.

To my freshman year professor:

I realize you may have been facing some challenges yourself in life. Since my diagnoses, I have learned firsthand to never underestimate what someone is going through. You will never know what is going on in a person’s life just by looking at them.

I understand I am an adult, and therefore should be held accountable for my work and actions. But, on the day I brought in a hard copy of my assignment, instead of emailing it, I hoped you would be understanding. I asked for compassion when I realized my mistake. I hoped that when I got back to my dorm room I could send you an electronic copy as well.
You did not accept my printed assignment and instead belittled my memory in front of the class.

Even when you knew I had chronic fatigue syndrome and POTS after I did a presentation in class about how something as simple as walking across campus can trigger my symptoms, you forced me to spend most of the 50-minute class running back to my dorm on the opposite side of campus to email you my paper so I would not fail.

I hope the next time you come across a student whose brain fog got in the way of the directions that you will have more compassion. I hope you will still hold them accountable, but not chastise them for something they cannot control. I hope you don’t use your power as a professor to demean students who are struggling and make them seem as though they are trying to get around the standards other students are set to.

No one should feel they need to hide their illness or be afraid to ask for help when needed because they are scared to look like they are trying to get the easy way out.

To all educators:

Thank you. Thank you for signing up to inspire and teach and grow every single student you encounter. I know you come across thousands of students in your time as a teacher and take care of each one as if they are as special as the last. I want you to know that to a chronically ill child, a teacher who gives them the tools and encouragement to succeed can change their outlook on life.

To all students facing chronic illness:

If you have had who educators failed to help you during times of need, don’t blame them. Spread awareness. Use your voice, because sometimes they need educating as well.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via KatarzynaBialasiewicz.

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