I Thought a Wheelchair Would be Restricting, but Instead It Set Me Free

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I often feel like I am living three lives: the one I am so desperately trying to hold on to pre-illness, the one that my family and only very close friends see and then there’s the one everyone else sees. This last life is my invisible illness life. They cannot see the fatigue and the pain, few people ask and if they do they usually don’t want to know how badly it really hurts. It’s just always best to smile and say, “I’m fine.”

 

There are not many ways you can show others what it means to live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. You can show the countless pills you take every day, but other than that it stays pretty much invisible. It’s always hard to explain why you can’t do something. I often get very confused looks when I explain that I just cannot make the walk across the road, because again people are not seeing my invisible, true life – they are seeing an able-bodied, empty façade of a healthy person.

Over the years my ability to walk has dramatically reduced, from the hours I used to walk at the beginning of my illness in the hope that it would clear my head to the under 10 minutes I can now manage. Not being able to make short walks increases the feeling of being trapped in a body that is no longer mine, the feeling of body “cabin fever.” For a long time I could see no way out of this, and stopped going out other than trips in the car. I wanted to be able to go out, spend time with my husband, continue seeing the world and living like my “pre-illness” life as best I could, despite the painful reality.

Most of my friends and colleagues must wonder how I’m still going out and doing things when I keep saying I can’t walk, but there is much they do not know about my invisible illness life. I choose the photos I post online, almost wishing to, at least online, live my “pre-illness” as I once did. I would never say I am embarrassed by my disability, and if someone genuinely asks I will tell them my secret. I just don’t want to show a “visible” illness, maybe it’s because that would strip away any remaining existence of my “pre-illness” life, but on the other hand I do want to improve people’s understanding of what it’s like to live with this illness.

One day we realized it was possible to hire wheelchairs from shopping centers. My husband and I were reluctant at first. I didn’t want to be further reliant on my husband, for him to see me like this, for me to look ill and disabled and for others to see me like this. And surely this would make me less free, more dependent, more trapped. Suddenly, my invisible illness went from being invisible to very clearly there.

I managed to get over our doubts and fears and my husband made a challenge of seeing how fast he could wheel me through the shopping center, how many small gaps we could squeeze through when browsing the clothes sales and how many shops I could be left stranded outside (well, I don’t want to go into video game shops anyway!) This whole new world then opened up to us where we could take short adventures again. For those who are worried about taking this step – well, it changed my life, and changed it for the better. There is no shame in getting some help, making your life easier and trying to get out and enjoy something you can’t otherwise do.

Eventually we took the plunge and we bought our own wheelchair. The wheelchair was going to become part of our weekly outing and thus it needed a name, Berty. I can say we have had some absolutely fantastic adventures and holidays, and put Berty through some really rough trips. To date, Berty has been to Tenerife, Cyprus and Scotland. We have been around archaeological parks and with three strong, fit people we even made up to the top of the Crawick Multiverse in Scotland. The view was amazing. Now it’s summer again and we often load Berty up for picnics and beach trips. Life has become so much more enjoyable and accessible again. I am so grateful to my family who have taken me on all these adventures and allowed me to continue seeing the world.

This photo of me in a wheelchair is one that few people see and it’s still hard to imagine how many people will see me like this. People’s perceptions make me feel quite anxious. Showing this photo is not for attention, as I always rather hide away and pretend this illness does not exist. I am showing this photo as I am happy to be outside enjoying my weekend and this is how I do it. There’s no need to feel sorry for me living my life like this; I’m having fun. I would welcome my friends to come and take me out and push me around, as this would be a novel experience and something new.

woman sitting in her wheelchair holding a pool float next to a lake

Using a wheelchair for outings has been much more to me than just having fun. It has really helped me manage my illness better – less booms and busts, less overdoing things. If I walk just a little too far this would have such a drastic effect on my health. I would first start to feel it in my head, a little dizzy, then my legs would hurt, and later I would be left unable to move on the sofa. With the wheelchair, I no longer feel like I will be trapped on the sofa if I leave the house.

I would challenge those afraid of revealing their invisible lives in public to stand (or sit) tall. We don’t need to be afraid, to hide away in our bedrooms with the curtains drawn and let the days slip past us. I was afraid of using a wheelchair because of my own preconceptions of how society would view me, how my pre-illness life would continue to slip away from me and how my loved ones would shun me. But these were my preconceptions, and as is so often the case, I was so pleased to be proved wrong, to be accepted and supported, to come more easily to terms with my invisible (well, more visible now) life. Take a chance, be less invisible, live your life “face forward.”

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How I Developed Myalgic Encephalomyelitis After Getting the HPV Vaccine

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I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache anymore because my body is broken. It doesn’t function or cooperate with me. Why? Because I’m severely injured by a vaccine which triggered myalgic encephalomyelitis.

selfie of a girl holding up her shirt to reveal wires and tubes connected to her stomach

selfie of a girl in a purple shirt

Throughout 2010/2011 I was given three doses of Cervarix, also known as the HPV or cervical cancer vaccine. I noticeably became unwell three to five days following the second injection in January 2011. I was experiencing relentless fatigue, muscular pain and an overall unwell “something isn’t right” feeling. Yet doubtfully, without any hesitation or seeing the correlation, I (regrettably) continued to have my third and final injection which considerably worsened my already poor situation of health.

My once healthy body has attacked itself, resulting in an autoimmune response, causing autonomic dysfunction. I’ve lost my precious immunity. In February 2012 I was formerly diagnosed with myalgic encephalomyelitis (ME), a debilitating illnesses with no cure. This was only the tip of the iceberg, so to speak; lurking within deeper waters are hidden challenges, battles and hurdles and we will never know when or what will eventually surface.

Having to live with a long-lasting chronic condition is completely unpredictable, uncontrollable and extremely painful. ME can be so severe it can cause complications which can result in total autonomic failure and what I call “secondary effects” – opening the patient up to a whole world of illness possibilities, such as fibromyalgiapostural orthostatic tachycardia syndrome (POTS), gastroparesis, eosinophilic colitis and mast cell activation disorder. Within the body of someone with ME, there are thousands of cells such as immunoglobulins or mitochondria that are continuously damaging one another, causing abnormalities and complications.

Personally, thanks to the vaccine ingredients and active HPV proteins, my body is replicating foreign (unwanted) cells without a stimuli of a virus, or bacterial bug. The lack of healthy cells to fight back (leukocytes, lymphocytes, granulocytes, monocytes) plus chemical changes/toxicity of any kind within the immune, endocrine or lymphatic systems can create a disease development tragedy – and, in severe cases, death, induced by a immunotoxicant. This has led to central sensitization: a condition that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity- causing persistent widespread pain and malfunctioning organs.

newspaper clipping with photos of chloe before and after her illness

I was once a dancer. A healthy 12-year-old who enjoyed sports and loved school. I didn’t want anything more than to gain a dance GCSE and get A’s, but unfortunately my body failed me. I wanted to audition for a dance college and work. I looked forward to a life on the stage, performing at dance conventions across the country. Dancing abroad. Being involved in the dance world, taking every opportunity, grabbing it with both hands and living the dream.

In my mind I was prepared for everything. But my body? It was getting weaker. The force of chronic illness grew within me. I tried to hide the pain from others, covering it up with a smile; I tried to live a normal life, which wasn’t at all easy. For the first three years on the outside I “looked well.” With makeup on I could be mistaken for a normal, healthy teenager. But the inside of me is a completely different story – there’s no way to escape it.

I am a prisoner within my own body. School was important to me. I never left the house for anything else due to the challenging process. Being able to attend school was a marathon and incredibly grueling, despite my mild/moderate ME back then. Yet school was so precious and the good moments were cherished. I was deteriorating, and all of a sudden I became homebound, wheelchair-bound, then completely bed-bound. Now multiple simple day-to-day things have become impossible for me to do. I just want to be in a wheelchair and visit a shop; I haven’t seen a shop in over three years.

selfie of a woman in the hospital

The severity of my pain is getting worse. It’s beyond my control, and shoots up way over my tolerable pain barrier which I have strongly built up over the years. It’s not just an ache… it’s a bone-crushing, deep, dull, stabbing, pulsating, musculoskeletal hit by a bus dragged along the motorway kind of pain. Which even morphine-based drugs hardly touch. Just laying down still causes agony. Not to mention the tonic clonic seizures which cause memory loss and loss of speech, the added fatigue which is not relieved after rest or sleep, the dizziness, fainting, cognitive dysfunction, light, noise and smell sensitivity and severe nausea. An unwanted bundle of evil which I would never wish on my worst enemy. It is a lifelong illness, with no effective treatment.

All these different pains are at war with each other – when the tingling and numbness collide with the migrating, throbbing, bone freeze-thawing-type pain, the battle is at its peak. Ironically, neither of the pains ever die fighting, they usually come back and attack stronger. But my body will never surrender.

Over the years I have experienced paralysis now and again – from being one limb, just my legs or from the neck down. To this present day I have had permanent paralysis for two and three-quarters years and it’s become a form of daily life for me and many others with this debilitating autoimmune disease. It’s frustrating. It can ruin your life.

Due to a boom-bust cycle and deterioration of my ME, it progressed into fibromyalgia in 2013. Now more recently, over the last three years, I have been suffering immensely from heart issues and arrhythmias, gastro, lung and bladder problems. Which weren’t too bad at first, but they just got worse as the months went on. I’ve been recently hospitalized for severe malnutrition from gastroparesis and a shrunken heart that beats irregularly and often peaks at 200 bpm (due to POTS). This last year has consisted of almost 12 months in the hospital. I’ve spent time in the ICU with respiratory arrest on life support, I had sepsis three times, I endured a severe rare form of colitis, had countless procedures, operations, many feedings tubes and I’ve been catheterizing up to 12 times daily for bladder retention. I am under investigation and queries for possible other autoimmune diseases as my body is now susceptible to anything.

woman in the hospital hooked up to breathing tubes and other devices

I am completely bed-bound and basically living my life lying down. My ME is classed as being in the “severe” category where I now need 24/7 supervision… The list goes on! I need a lot of assistance due to all of the above. It’s life-limiting, and isolating, but there is always hope and a reason to smile, laugh and surround myself and others with happiness every single day.

“Hope is being able to see that there is light despite all of the darkness.” – Desmond Tutu

Having these illnesses has basically changed my life. The way I look at the world. How I appreciate the smallest of things. I don’t take anything for granted. I view life from a completely different perspective, and I get easily pleased with the smallest of achievements! If I could turn back time I would really appreciate and be aware of every single step and every breath I took without tingling, numbness, being in agony or collapsing. I’d appreciate the ability to eat food and cherish the taste (because I’m now tube-fed directly via my bowel and I have severe allergies). I’d appreciate feeling refreshed after sleeping. I’d appreciate showers and easier self-care. I’d appreciate freedom.

photo of woman's legs as she lies in bed

I loved my pain-free life regardless, but now I have realized I should’ve loved it much more. I never really realized how much I loved life, or how much I would miss my “old” life until it was grabbed from me – leaving me in a world full of mystery and loss.

Being chronically sick has shattered my goals, plans and my dreams. Being unwell has taken my ability to (sometimes) talk, walk and generally live, let alone follow my dancing dream and do various things a typical teenager should do. I missed out on the concerts, festivals, parties, theatre trips, college, uni, traveling adventures and so much more. I’d do anything to have the healthy life I had six years ago. I wish I could have my teenage years that had been stolen from me back…

However, as much as I despise being so ill, ironically, I would never erase the experiences which have come with the pain, sickness, heartache and all the horrible events that I have endured during my “teen-hood.” Why? Because despite a life full of hardship, hurt and negativity in addition to a bunch of severe diagnoses following from a vaccine injury, being unwell has come with many positives that strangely balance out the negatives.

woman holding newspapers with headlines about her developing myalgic encephalomyelitis after getting the HPV vaccine

My “new” life created a new story with blank pages. My blog, “The Chronicles of Chronic Illness,” began. Each chapter was unexpected – I was forever wandering into the unknown with a variety of new adventures, new goals, new dreams and a brand new altered perspective on everything. I knew my story would be written and printed as new things occurred. It’s history, and no matter how much I would like it to disappear, I know it can never been undone or deleted.

That’s why I decided to find the best in every situation to create a story worth being told (Chloe’s Chronicles of Chronic Illness – My HPV Vaccine Injury Journey). This never-ending fight for my life has taught me an awful lot. I have witnessed and overcome many things that people will never do in their lifetime. I have found happiness despite darkness and I’ve learned how powerful that alone can be. I have discovered the inner strength I never thought I had. I understand how much willpower, determination and endurance it takes to get through every minute of the day.

I know who I am. I’m Chloe and I am a warrior. Life has moulded and sculpted me into the wiser, stronger, more educated and more thankful woman I am today. Life is unpredictable, but I am hopeful. I hope that one day, despite the storms, I will be able to dance in the rain and be in much less pain.

“Hope is being able to see the light despite all of the darkness.” – Desmond Tutu.

~ Chloe

P.S. If you or anyone you know got diagnosed with a chronic condition after the HPV vaccine (even if you think there’s no correlation), please contact me.

This post originally appeared on The Chronicals of Chronic Illness.

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I'm Glad I Look OK, but I'm Struggling Just to Stand Here

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“I’m sick.”

“I have health issues.”

“I struggle with chronic illness.”

“I can’t %@# stand here any longer!”

How does one tell an acquaintance, a neighbor or a store clerk that one has an invisible disease? It’s a skill I never wanted to learn, and I’ve got to admit I’m not yet good at it. Mostly when people ask me how I am, I say “fine,” and I still think that’s the best answer when dealing with a stranger – when the question is purely perfunctory. But what about a distant family member, an old friend, or someone I see on a regular basis? What about when I truly need to convey information about my physical limitations?

In those cases “fine” becomes either a passive-aggressive lie, a self-defeating postponement of the truth, or a trigger for escalating illness. Because I’m not fine. I’m not OK, and there’s a fair chance I never will be.

“How are you?”
“Well, I’m OK emotionally, but physically I’m a wreck. Thanks for asking.”

“It’s been awhile. You look great!”
“I’m glad you think I look all right, but I’m struggling just to stand here. Do you see a chair?”

In my heart I know that those neighbors, acquaintances and relatives with whom I only occasionally touch bases want to hear that I’m doing well. They’re not being unkind, and they wade into an awkward subject before they understand what they’ve done.

“I heard you were sick awhile back. Thank goodness that’s behind you.”
“It’s not, exactly.”
“But you look so good!”
“Er – thanks?”

All the time I’m talking to others, I’m keenly aware that my sickness isn’t their problem. I have elderly relations who, every time I see them, recite their current list of symptoms and daily regimen of medications, along with the unpleasant side effects. I don’t enjoy hearing that, and I don’t want to be that person – I don’t want sickness to be the center of every conversation. But I’ve got to admit that right now sickness is a big part of my life, and while I hope that the terms of my existence won’t always chafe so much, if someone who cares about me wants to know what’s going on with me – well, I’m sick, and my sickness can be so isolating that it feels as if no one in the world understands.

Sometimes I want to walk into a room and scream, “I have a disease, and it’s the worst disease in the world – worse than yours. It’s changed my life in every way, and I can’t vacuum my carpet, or cut my fingernails, or fold clothes without thinking about the energy it will cost. And I can’t work. My husband has had to shoulder my responsibilities along with his own, and I feel useless, and shocked at my fate, and I lie in bed at night and think about how small my life has become, and it terrifies me. And when you talk about world travel, and painting your house, and cleaning your closet, and hiking amazing trails, and making your home into a Christmas wonderland, I’m happy for you. I really am. But I’m also reminded of all the things I can no longer do, all the doors that have shut in my face, and it makes me want to weep.”

This sickness of mine is between me and my Maker. I know that. I’m nobody’s victim – no one owes me anything. Still, I’m a social animal – I long to be seen and heard and understood. If I can’t find a way to tell others about my illness, they’ll continue to see only my rouged face and lipstick smile, and that will make me feel as invisible as my disease.

So I’ll keep searching for a way to articulate my new reality – without self-pity, anger or shame – and maybe someday it will come easier to me. Until then, it would help so much if, the next time I met an old friend in my local grocery store, or at the mailbox, or at a family event, the question wasn’t “How are you?” but “How are you feeling?”

“How are you feeling?”
“Not great this week, but before that I had a few decent days. What’s new with you? How are your grandkids?”
“Good, and I want to tell you about them – after we find you a chair.”

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Thinkstock Image By: TonTectonix

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The Difficulty of Living With a Fluctuating Condition

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I don’t know about the rest of you, but there is such a difference between my good and bad days.

Yes, I pace which is the number one advice for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I pace till I’m blue in the face (not literally blue, you understand). People pace differently, but it involves alternating rest and activity at a level which is “manageable” for you. For me, it involves doing exactly the same thing every day. Day in, day out. If it’s 11 a.m., you’ll find me in the shower. 6:40 p.m.? That’s my 13-minute (to be exact) reading slot. This was what I was taught. Find your baseline of activity and do it every day no matter how you’re feeling.

Pacing is supposed to stabilize you. Well, it has to a certain extent. I no longer have absolutely abysmal days when I can’t, for example, carry my plate to the kitchen after eating or when I can’t send a few text messages. And I would never not live without pacing. On the whole, it has made my symptoms bearable and allowed me to increase my activities a tiny bit each year.

Yet, I still feel like I’m riding a rollercoaster. I will have a few days or even a couple of weeks when I don’t feel too bad (as long as I follow my pacing regime, any slight variation and I get cream crackered). I get happy. It feels like a miracle. Can this actually be happening? I’m able to feel well enough to enjoy the small things I do? Might life actually get a bit better for me? Sometime, my daily routine even feels too little. Good days raise your expectations. You start to hope, make plans to see friends. But making plans when you have ME/CFS is pretty difficult. Basically you have no idea how you will be one from day to the next, from one hour to the next even. Because sooner or later, bam. The fatigue hits. Then I struggle to do even my basic routine. I try to work out why I’m feeling so awful. Did I overdo it? Do I have a bug? And the dreaded question of all, have I relapsed?

And I don’t know about the rest of you, but I seem to feel responsible for my bad days. I start to feel l like a failure – I’ve never worked so hard at anything (11 years and counting to be exact) and not achieved my goal. But here’s the thing. Pacing may help manage the illness to a certain extent. Other things may help a little too – meditation, supplements, etc. The truth is, however, that there is no treatment and no cure for my condition. There will be good days and there will be bad days. That’s the nature of the illness no matter what you do (or don’t do). There’s no point trying to reason with it because there is no rhyme or reason.

So here is your reminder (which I need as much as the rest of you). You are not to blame for your illness. You are not in control of it. And on bad days, when you don’t believe it’s possible for you feel any better, try and remember that you do have good days. You will get some respite and you will smile again.

One of my good friend’s favorite phrases is “You can’t control the waves but you can learn how to surf them.” And I try to remember this when I can. Although, for me, it’s less surfing, more hanging on for dear life to a bodyboard.

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Thinkstock photo by bernardbodo

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With Chronic Illness, My Spirit May Be Genuine but My Smile Is Fake

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When you see me, I will always smile, ask you how you are and share a kind word or compliment. If you are sad, I will listen; if you are happy, I am happy for you. In fact, I love people, listening to them, helping them and bringing happiness to their lives when I can. All of this is the essence of who I am and is all very genuine. Except for one thing.

My smile is fake. While the intent of it is real, the spirit behind it has long since abandoned me. The reality is that smile pasted on my face actually takes quite a bit of energy. Energy I don’t naturally have anymore. Smiling is a conscious effort now. Also, as truly and deeply interested I am in what you are saying, actively listening is also a conscious effort. It’s a conscious effort to follow along in our conversation, share in your joy or sorrows and even just plain remember how the conversation started and what all you said. Sometimes I can literally feel my energy level slipping away during our conversation.

 

Needless to say, having an invisible illness has its up and downsides. On the upside, while inside I am battling myriad painful symptoms, from outside appearances I am right there with you. And I really am. It’s amazing how talented you can get at this odd form of multitasking.

What I have found is that there are two keys to success for me: energy conservation and prioritization.

Occupational therapists are amazing at arming you with strategies to minimize your energy usage in just about every daily task. Implementing one of them may not seem worth it, but incorporating many of them into your entire day all adds up to “extra” energy and truly makes a difference. Don’t get me wrong, I’m still exhausted by the time my day ends, but it does make my day go a bit smoother.

Secondly, energy prioritization dictates everything I do. My day, and the next day, are all well planned out. If I have to work the next day, I plan ahead to make sure I have enough reserves to not only successfully work that day but to do so in a way no one can tell I am in pain or exhausted beyond words. The few times a month I meet a friend out, that too takes a lot of preparation. I will make sure we aren’t doing anything that will put me in a too loud, too cold/hot or too bright of a situation, among other things. Often, I will also lay down for hours beforehand.

All this preparation yet I know I may still pay the price the next day with a flare-up of symptoms. But it’s worth it, because my friends that have stuck with me through this mean the world to me. They are the motivation that keeps me going, the extra support I need on a bad day and the social interaction I need when my condition has caused too much isolation. They are simply priceless!

Life is full of give and takes; we all make these type of decisions. It’s just that those of us with myalgic encephalomyelitis make these decisions on a more day-to-day basis and at a much different level. The myriad symptoms myalgic encephalomyelitis presents creates a tricky guessing game you can never really fully predict. With determination, diligence and focus though, you can find ways to prevent some of the flare-ups or minimize the effect of them. As with anything in life, you learn the odds, place your bet and hope for the best.

I play to win!

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Thinkstock photo via Dynamic Graphics.

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Why I Don't Tell People I Have ME/CFS

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I have ME/CFS.

Man, that is really hard for me to say out loud. It is hard to even accept the fact that this unwanted alienator is going to be present most likely the rest of my life. It also is hard to explain what ME/CFS feels like. As is true with most everything in life, unless you have experienced it, it is hard to understand. You can relate the fatigue to the one time you “over-exercised” and were sore for the next couple days, but without trying to undermine you and be rude, I can promise, it’s not the same thing. When you do find a friend who experiences the same illness, you immediately gravitate to them and become best friends, because they understand at levels most don’t. Kind of funny the friends that I probably wouldn’t have come to love as much as I do now because I found out they too struggle with chronic illness. We share a really weird something in common, making us lifelong friends.

 

Just today I had a friend (who also has chronic health conditions) ask what illness it is that I have. My response was, “It’s probably better to ask what I don’t have.” I have three children, and after delivering each of these children, my condition has worsened. In the last six years (my oldest is 6), I have been to several physicians. I have had several diagnoses. So many in fact, that if I was to list them, I would bore you and if I’m being honest, myself too. It wasn’t until my third child that I started noticing patterns of my illness and researching and found a neurologist who helped guide me to where I am today. Her guidance helped me to reach a specialist who has now diagnosed me with ME/CFS, fibromyalgia and POTS.

ME/CFS has many names and faces. It has been called ME (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), SEID (systemic exertional intolerance disorder), PFVS (post-viral fatigue syndrome) and CFIDS (chronic fatigue immune dysfunction syndrome. Do you now understand why it is hard for me to explain? The name can’t be agreed upon, the cause is unknown and there is no diagnostic biomarker (or way of testing for a definitive diagnosis, such as a blood test, etc.). It is characterized by severe flu-like fatigue and exertion intolerance, limited functional capacity, post-exertional relapse or malaise, headaches, muscle or joint aches, dizziness or orthostatic intolerance, cognitive dysfunction or impairment, sleep disturbances and infection or allergy symptoms such as sore throat, tender lymph nodes, low-grade fevers.

Though it was difficult to swallow the reality of the conditions, the diagnoses have made it so much easier to live my life. Coming to accept what is rather than wandering to and fro finding answers has been incredibly cathartic for me. When I began to write and share with the world, it helped me to stop “pretending.” Before my diagnosis, I had some family and friends who had no idea I suffered every day because I “hid” my illness well. Which is why I want to share a really small and incomplete glimpse of what I feel like. In case you wanted to know.

Yesterday I went to two stores and the bank all in order to get ready for family coming over for Independence Day. It took no longer than two hours, and today I am so fatigued and feel as if I’m coming down with the flu. The difference is, I have experienced this several times a week for the last six years at varying degrees of severity, so my body and my mind have gotten used to it. This is why not even my closest friends and neighbors know what it is I struggle with. It has become part of who I am, at least for now. Chronic illness can also be known as “invisible illness.” It is hard to see what people struggle with when you can’t see physical manifestations.

On days like today, I still go out to the flag ceremony, breakfast and the beach with my family in the morning. And I will still have my family over for dinner tonight to celebrate America’s freedom, which also happens to be my favorite holiday. Today I will have rested for several hours in between activities and for the next couple days I will need to make sure I rest and take “proper care” of myself to regain my strength. My legs feel like lead and I am oh so tired. I will sit on a stool while preparing meals.

Today, when it is close to 100 degrees, I am wearing compression pants so that when I stand up I don’t feel lightheaded and black out. Today, when the rest of the world is celebrating America outside, I will make sure I am inside in my really cool house (minus the few hours we spent outside in the early morning) so I don’t feel so awful. No, I won’t complain to you. No, I won’t tell you how hard it is sometimes. Because I have been blessed with so much. So much more than I can even possibly put into words. And so I carry on each day, just like all the rest of my friends will do.

This is a small part of ME (get it, ME/CFS). This is what it is to live with it day after day for several years. And this is why when you ask what it feels like or what I have, I might seem really awkward. Because even people with ME/CFS don’t fully understand what is happening to their bodies. In case you wanted to know!

I believe in you. I believe you can make miracles happen. And I believe that peace (true inner peace) is the answer.

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Thinkstock photo via Maria Kuznetsova.

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