Kate Eastman

@kate-eastman | contributor
I am a 30-something educator turned professional patient from Sydney, Australia who loves a bit of fitness, all things creative and a whole lot of baking. I have spent the past 3 years trying to find the balance of enjoying the things I love whilst living life with chronic fatigue syndrome.
Kate Eastman

Chronic Fatigue Syndrome: What Not to Do When You're Exhausted

When you are completely fatigued and exhausted you enter into another realm…the realm of the “super pooped.” This could be from the intense chronic fatigue your illness has left you with, the resultant forces of medication changes or the painsomnia that has kept you in agony for nights. When you are super pooped, no rational thinking occurs at this point. Random acts magically take place. The world is not a safe place with the super pooped on the loose! Here are some words of wisdom…or 10 things not to do when super pooped (i.e. what I did on Tuesday). 1. Drive. Yes, you have good automatic recall of how to actually drive, but when you can’t remember how you made it to your appointment, start worrying. Then there is the parking… Yes, my car has more dings in it post-CFS (chronic fatigue syndrome) than pre-CFS. Thankfully none were added today! 2. Eat really good-looking paleo treats (like chocolate hazelnut brownie) when you order your coffee before your appointment because you are so excited they have a paleo treat – though you’re forgetting you are going to the appointment for the intense stomach pain you are having. Pure decadent torture! 3. Write a guest blog post while drinking said coffee before the appointment, forgetting you have barely left the house in a week. And not only have you just used 30 minutes of cognitive energy leaving the house, but you have also showered, dressed and are out in public, so trying to work the brain is not a wise idea. No fear – that blog post will most definitely get edited before sending it off! 4. Try and do anything other than smile politely with a medical secretary who gives you “the look” when you ask about the concession charge…while then trying to restrain the not very tactful monologue about how far that $20 difference will go, and that in fact the appointment fees are a third of the amount of welfare money I am living on each week. In retrospect, I kind of wish I could have let it loose…maybe next week when I am less super pooped. 5. Cook dinner. Note to self (and others): baking paper burns when near the element of the oven you have turned on really high. Fingers burn when they grab the baking tray in the process of putting out the resultant fire. This means posts like this are written entirely with your left hand on your phone as your right hand is now out of action, stinging like crazy. Note to self #2: check smoke alarms that didn’t go off despite fire. 6. Cook dinner (Part B). Because when making pizza on gluten-free wraps for three people it is important to check: A. How many wraps are in the pack (two, it turns out, hence leading tothe drama in #5 when I tried to make an alternate base for myself). B. If we actually have any cheese. (As a non-cheese eater I don’t pay much attention to this…I just presume it will be in the fridge. Turns out…don’t presume.) 7. Post on social media. A bit like how the movies portray drunken texting of the ex in the early hours of the morning. The brain definitely ain’t functioning clearly. A whole lot of posting then deleting… Whoops! 8. Try to remember where you hid your housemate’s birthday presen t you bought months ago (because you are a mostly organized individual!) so you can wrap it. Found it eventually…part in a box of handbags and shoes, and the other part under my desk in my wardrobe turned office. In the process, decide on the best plan of action to start cleaning your room and reorganizing your life at 8:30 p.m…with a killer sore hand (see #5). 9. Try and use any adjectives other than “nice” and “good” when texting with a friend. Sadly, no adjectives come to mind. Which is odd, because normally when I am super pooped I can write brilliant cheesy 25 words or less competition entries. 10. Start pondering life, your existence and why that other person hasn’t texted you back at 9:00 p.m. Always a bad move in the evening. For anyone. Not just the super pooped. 11. Count. 12. Realize you have a great idea for a blog post about being super fatigued and all the really silly things you did today and so your left hand starts typing away on your phone. And then all hope of falling asleep despite being super pooped isn’t going to happen for a few more hours as you have missed the window of sleep opportunity. And your hand still really hurts… This post originally appeared on Make It, Bake It, Fake It. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Creatas Images.

Kate Eastman

Support and Prayer for People With Chronic Illness

Dear Chronic Illness Warrior, As you wake this morning and the day ahead looks bleak and you don’t want to repeat the endless monotony of the chronic illness life, when you don’t want to put one step in front of the other, these words are for you. This is my prayer and my wish for you… 1. May you realize you can do it. Yeah, I know, you’ve heard those words so many times and you really feel like the next person who says it deserves a punch in the face. I get it. I often get those urges, too. But you can do it. Not just because you are strong, resilient and an absolute legend, but because you have faith, you have hope, and you have got this. 2. May the appointment goodness be in your favor this day. May the wait be short. May there be new magazines in the waiting room so that you don’t have to read the 2004 issues of Vogue again. May the doctor just get it. And may you walk away with hope and a plan of action. 3. May the pharmacy have all your medications on hand and may you be surprised with how cheap they all are. 4. May your body react positively to new medication and not leave you bruised battered and seeing pineapples. 5. May your food be your friend today. And, oh so tasty. 6. May you receive a kind word from your family, friends or colleagues. 7. May sleep come easily, may your bed feel like clouds and may the random dreams of dancing pineapples stay at bay. 8. May your hopes soar. Higher than you can imagine. 9. May your desire to punch the person who offers you a cure be converted to love and compassion. 10. May your Epson salt bath ease your pain. 11. May Netflix release a new series. Or the next season of your favorite so you don’t need to watch “Gilmore Girls” for the 50th time. 12. May the sun shine… but not too much that it sets your symptoms off or the glare is too great. 13. May chocolate, or coffee, or flowers appear at your doorstep. 14. May a friend or loved one send a text or call just to say they care for you and are thinking of you. 15. May your one step in front of the other not cause you too much physical pain. And maybe, just maybe, today might be OK, because whatever today holds, even if none of the above happens, and the day is filled with hallucinations of pineapples, your faith and your hope will get you further than can on your own. Yours in pain, Kate Follow this journey at Make It, Bake It, Fake It. We want to hear your story. Become a Mighty contributor here .

Kate Eastman

Questions to Ask Friend With Chronic Fatigue Syndrome

Another image of friends out socializing pops up as I log onto social media. Longing fills my soul. It has moved way beyond FOMO. I no longer have that fear I am missing out. There is no doubt about it. I have long accepted it. I am missing out. I’m four years into a disease (chronic fatigue syndrome/myalgic encephalomyelitis) that has taken so much from my life and I no longer anticipate the invites. At times, I no longer expect to be thought of or considered to be much more than my disease. My life has been categorized and contained. I am the friend/colleague/family member with the chronic illness. The stereotypical view of my life as it now exists has been formed, and that is the view that remains day in and day out. Yet, my life with a chronic illness is nowhere near stereotypical. My capacities and my abilities vary day to day, month to month, and year to year. What you saw of me while I was trying to maintain a job and live independently is a completely different me than what you may see now. Last month I struggled with balancing life amidst welfare agency work expectations, the month before was spent fine-tuning a new medication that made me sleepy all the time, this month it is a working on increasing my exercise, while trying to figure out why I have this random abdominal pain. Each month has looked completely different. Each month there is a new set of challenges, a new set of symptoms or a new set of physical, emotional and cognitive capabilities. What I couldn’t do three years ago, I can do now. What I struggled with last week is now a different battle this week. What you saw in a bad month or a day isn’t the whole story. So, please ask. 1. Please ask how we are. Please ask how we are today. Often our looks don’t match the way we feel. We are masters of disguise. We have mastered the concealer forthe under-eye bags. I wear pretty clothes when I go out, as it takes the same amount of energy to dress in something nice as to put on my pajamas. Plus, I get so bored with wearing the same comfortable, warm, loose-fitting clothing day in and day out. A friend sent me a text on Wednesday just asking how I was and letting me know I was on her mind this week. She had no idea I had been feeling like rubbish all week and was really disheartened by it all. That text meant the world to me. 2. Please ask us to social events, even though we may have said no in the past. Please ask how those social events can be accessible and doable for where our bodies are currently at. Maybe the restaurant needs to be intolerance friendly, maybe we just need a lift, or maybe an earlier dinner would work better. For me, a one-on-one catch-up for coffee with a friend adds life to a boring, repetitive week and is manageable for my cognitive and physical energy levels. 3. Please ask us to help, serve and contribute to society. In families, in churches, in schools and in workplaces. Please ask what we have to give, whether that be cognitive input, some administrative help or some hands-on support. It may not look typical, but ask away. Please ask what barriers are currently in place, and help come up with ways to conquer those barriers. Please ask how much notice ahead of time you might need. I can make things work that I know are on a set day and time weeks ahead. I will plan my energy and my resources around that event. Likewise, I may have an abundance of energy one week, and so may be able to step in to babysit, help out or go get a coffee at the last minute. 4. Please ask how you can help. Please ask how you can care for us. Four years on,and I still need to resort to a banana for dinner if the freezer is empty of frozen meals. After church on Sunday, as my city faced a torrential downpour, a friend asked if he could go and move my car to the front entrance for me. Yesterday, I was actually feeling OK to make it to my car parked 30 meters away in the accessible parking spot. Yet, merely three days earlier, that 30 meters would have been torture, and that offer of help would have been a huge blessing. 5. Please ask the hard questions. How are you emotionally and mentally going at the moment? How is your faith? What things are you struggling with? Where are youhaving difficulty finding joy? How are you going financially? How are you finding the endless doctor traipsing? How is life actually going? These questions need asking. I need people walking the messy parts of this journey alongside me. Please ask, because assumptions hurt. Assumptions leave you lonely. Assumptions can leave you questioning your worth, your capabilities, your gifts, your personality and your intellect. Please don’t assume. Please ask. There is so much grace, love, understanding and acceptance in the simple task of asking. And, yes, sometimes the answer will be no, not this time. Sometimes the answer will be messy, complicated and uncomfortable. But the answer could also be yes, and hit the nail on the head, and more than one life will be enriched because of the simple task of taking the time to just ask. Disclaimer: You never need to ask about chocolate or coffee — they are a given for me and will always bring an abundance of joy into any of my days. Follow this journey at Make It, Bake It, Fake It. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Kate Eastman

To the Person Who Told Me ‘You Look Too Well-Presented to Be Sick’

Kate smiling. “You look too well-presented to be sick.” Why thank you for your compliment.I thank you for your thoughts. I thank you for noticing the effort it tookTo make it out of my house.The hour it took to shower and dress,Then lie down on my bed.The time to dab some makeup on,And painfully do my hair.The way I need to hide the nausea,The breakfast left behind.The excruciating pain that jolts my jointsThat seized up on the drive.To compensate for the slowed cognition,The fog that clouds my brain.The medications that sway my stepAnd make me live on edge.I’m glad that I can hide this truth…It is better left unseen. “You look too well-presented to be sick.” Why thank you for your compliment.I thank you for your thoughts. I thank you for noticing the values I hold dear. They told me I needed to be at this meeting,And so that is why I am here.I turn up to my appointments.I submit my paperwork on time.I do my exercises,I take my meds,I mostly rest when told. Yet turning up for this meeting,Dressed and prepared to talk,Has meant this is the only thingMy body can do today. I am here before you in this moment,A glimpse of me in my life.I am a professional by education.I am now a professional in sickness, too.I pulled myself together,I sacrificed to make it happen.I went all out to be here.You will not see what I couldn’t doTo make it all this way.The cleaning, cooking, shoppingAll left for others to do.The future dreams left unfulfilled.Yet I made it to this meeting,You had better make it good. “You look too well-presented to be sick.” Why thank you for your compliment.I thank you for your thoughts. My age, my race, my educationDoes not change a single thing.Whether I ate all my veggies as a childOr left the broccoli on the side.Running a marathon, or lifting weights,Or simply on a stroll,This disease does not discriminate.It does not pick and choose its playmates.It takes each one of us captive,It chooses how it takes its hold. “You look too well-presented to be sick.” Why thank you for your compliment,But have you stopped and thought… What does a sick person really look like?All spotty and pale?All woe to the world?Or do I need to leave the house in my PJ’sTo make you tick the box?Do my actions and my values whilst I am sick and ill,Do my actions and my values need to change at all? Yes I am sick and downtrodden.My world has fallen apart.My dreams, desires and life are on hold,And I feel like rubbish all the time.Yet I have hope and new formed dreams,A future and a life. So thank you for your compliment…I must do chronic fatigue syndrome well!If I can pull off looking this wellI trust that this is swell.But maybe your thoughts towards sicknessNeed to change as well. So thank you for your compliment,I thank you for your thoughts. To me it shows that understandingBy health professionals and government agenciesHas a long, long way to go. But thank you for your compliment,Because obviously I am pulling off sickness like a pro! Follow this journey on Make It, Bake It, Fake It. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit A Story page for more about our submission guidelines.

Kate Eastman

Surviving Holiday Party Small Talk When You Have a Chronic Illness

The holiday season is well and truly here — a joyful time full of many festivities, parties, catch-ups, events and family reunions. It can be the worst nightmare for a person with a chronic illness! Not only is this season a physical challenge for managing energy levels, stress, health and dietary constraints, but it is also a season when you are bombarded with countless occurrences of the dreaded small talk: the painful, superficial conversations you have with new acquaintances and people you only see once a year. There are a number of practical ways to make these conversations and events somewhat manageable. 1. Find a quiet place to sit, so you can conserve some energy and not have your cognitive function battling the additional noise. 2. Avoid alcohol which can exacerbate symptoms or react with medications. 3. Eating beforehand, so your stomach isn’t grumbling as plate after plate of food that isn’t on your specific diet pass by. 4. Go to the event with a good friend or partner, who is happy to help you escape when the evening or conversation becomes too much. These are all useful, practical ideas. However, it is the content of these conversations that are the real challenge. Distant relatives, partner’s colleagues and long lost “friends” all want to know the same two basic questions: “How are you?” and “What do you do?” These are both perfectly reasonable questions in themselves, but when your days, weeks and months are primarily spent in bed, at medical appointments or sometimes in the hospital and you feel like you have been running a marathon while having the flu, how do you respond? Yes, you have made it out of the house and to the event, and yes, you have made an effort with your makeup, your outfit and your plastered-on smile, but the reality of how you are and what your year has been like is a far cry from pleasant, superficial small talk. So, how can you respond to these questions? Let’s start with the first one: “How are you?” is pretty much guaranteed to start most conversations. There are a few of possible responses: 1. “I’m well.” This could be interpreted that you are a healthy individual without any cause for concern. However, what you probably mean is that in the scheme of things you are actually doing pretty well, you are out of bed today, the pain is manageable and things could really be a lot worse. 2. “I’m doing OK.” This could be taken that you have had your ups and downs (like most people) and are generally just cruising along. What’s really going through your head is that you actually feel OK at this moment. If they were to ask you again 20 minutes after enduring standing at this party and making small talk, your answer may be the same; yet, by this stage you are holding yourself up against the wall, missing every second sentence spoken to you and really by now just want to be home in bed. 3. “Actually, I feel like I have been hit by a truck!” Here you have chosen to lay all your cards on the table. You do feel like you have been hit by a truck. Everything hurts and you are struggling to function. Just be prepared for the person you are speaking with to think you are a hypochondriac and watch them try to escape the conversation as fast as possible. Sadly, there appears to be no middle ground. However, if the conversation has survived the first stage of “How are you?” and has moved on to “What do you do?” how do you respond? 1. “I am a (insert your profession).” Hope the follow-up questions don’t require you to disclose your omission that you haven’t worked in over a year due to your health. Redirect to talking about the other person as soon as possible! 2. “I am currently taking a period of leave from ____, to focus on other things.” Again, redirect as soon as possible — people love talking about themselves! 3. “I do nothing! I am sitting around milking my government disability pension for all it’s worth.” Please note that this answer may result in funny looks and a quick exit from the conversation. 4. “I am a lady of leisure.” Leave it at that and the air of mystery that surrounds you. 5. “I am a professional patient. I have ____ (insert chronic illness) and I spend my time looking after myself, managing multiple appointments and specialists and navigating the mess that is our health care system and government support services.” This is my preferred answer. However, once the chronic illness has been revealed, be prepared for the barrage of “advice:” “My great aunt had that. She was healed by ____ (insert drug/food/exercise/specialist of choice!)” “Have you tried ____ diet. I hear that is good for tiredness.” “I know a great alternative ____ (insert health care practitioner of choice)” “I get tired all the time, too!” And with that, you smile sweetly, grit your teeth and make a choice: either exert your remaining energy for the evening on educating that individual about your illness with as much grace as you can muster, or excuse yourself and head to the bar knowing this is going to be one very long night! Follow this journey at Make It Bake It Fake It. The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Kate Eastman

Being Too Scared to Use Your Disability Parking Permit

I received a disability parking permit this week… but I’m currently too scared to use it. Too scared to face the condemning looks as I step out of the car and walk without visible impairment into the shops. Too scared to hear the words, “But you are not disabled!” shouted across the parking lot. Too scared to return to my car to see an angry note shoved on the windshield: “Leave the spots for someone who actually needs them.” The many stories making the news this week of others facing the same issue aren’t helping me feel any more confident about accessing these parking spaces. See, I have an invisible illness. A chronic illness that’s not apparent by looking at me, the 30-something, well-presented woman standing in front of you. Yet, I have a very real, very debilitating and crippling disease. You could walk past me and not have a clue about what’s going on inside my body, I look no different than the person next to me. However, I have a body where breathing is exhausting and the pain is constant. A body that doesn’t allow me to leave the house or my bed on a regular basis. There is nothing imaginary about my illness. Three years of debilitating symptoms are proof of this. It may be invisible, yet it is quite real. One of the different requirements of the permit I received is that you are detrimentally physically affected by walking 100 meters. 100 meters. I am ashamed and embarrassed that my life has been so hugely affected by 100 meters. Three years ago I was training for a half marathon. These days, 100 meters is torture and has day-long repercussions. 100 meters. If I do make it out of the house, I am the woman praying fervently for a parking spot as I do laps around the car park. “Please God, let there be a close spot today. I don’t have the energy or the pain levels to have to walk from the back of the parking lot.” I am the woman who had long outsourced my supermarket shopping. I am the woman whose last attempt to try clothes on in Target left me in bed for a week… and I didn’t even walk away with a new dress! I am the woman attempting to attend three to four appointments a week to manage my disease. I am the woman whose only achievement in a day is making it to that appointment. Take for example my physiotherapy appointments. These are located one suburb over, at most a five-minute drive. Yet the parking situation is so atrocious in this suburb that I need to leave 20 minutes before the appointment, take five minutes to get there and spend 10 minutes driving laps around the suburb trying to find any parking spot. When I do find a spot, I have to make sure I have five minutes to walk over 400 meters to the clinic. Then I have a 30-minute appointment that requires both physical and cognitive energy, and then I need to make the walk back to the car. The toll this takes on my body leaves me in bed for the rest of the day. If I could access one of the disabled parking spaces closer to the clinic, this might mean I have enough energy to make and eat my lunch when I get home, or not max out my pain medications for the day. Then I wonder about the other benefits of accessing these parking spaces. Maybe I could make it to the pharmacy to pick up my medication without it being my only outing of the day and leaving me doubled over in pain? Maybe I might be able to make it to the beach, or the movies or out for dinner and actually be able to enjoy being out of the house instead of worrying about how far away I’m going to need to park and how much of my limited energy it might use? Maybe I will be able to reclaim some of my independence, not needing to rely on someone else to drive me just so they can drop me at the door? Maybe it might be OK? Yet, why am I so scared? Is there such large scale abuse of these parking spaces from those who don’t meet the requirements to park there? Is there that much of a misunderstanding of disability and illness? Is there a culture of mistrust of medical and government organizations that make the decisions to approve these permits? Why do people receive such abuse for parking in a space they have both medical and governmental approval to park in? I would honestly give anything not to need to park in one of these spots. I hope and pray that as I begin to use my permit, there will be enough compassion and understanding for me to be able to access the 100 meters my body will allow. I live with enough personal shame and embarrassment about how my body has left me; I hope I won’t have more of it inflicted on me by others. Follow this journey on Make It Bake It Fake It. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Kate Eastman

Misunderstandings About Chronic Fatigue Syndrome

Each and every day, I’m fighting to challenge the perceptions surrounding chronic fatigue syndrome (CFS), whether it’s with well-intentioned family or friends, skeptical medical professionals or random acquaintances who want to sell me the “special” supplement that healed their great aunt. Walking through life with this disease has been both a battle and a blessing for me over the past three years. It has turned my life completely upside down. It has impacted my health, fitness, social life, finances, living situation, independence and career. There have been plenty of hard days, but surprisingly, many moments of joy, too. However, one challenge I end up facing time and time again is not from the disease itself, but from those around me and their understanding of this disease. So here are the five things I wish people understood about my chronic fatigue syndrome: 1. It’s not about being tired. Yes, I’m tired. However, someone with CFS can be so fatigued it can feel like you have run a marathon with the flu. And that’s on a good day. It’s a type of tiredness that is beyond what you could start to articulate. This complex disease can affect all parts of your life and many bodily systems. A cognitive brain fog clouds your thinking, nausea doubles you over day in and day out, joint and muscle pain throbs and burns and you can’t move, the constant flu-like state, the dizziness when you try to stand and the respiratory distress from when your body is so exhausted that the simple task of breathing becomes a labored affair. Unfortunately, it’s not a case of getting more sleep. I could have a lovely 12 hours of sleep at night and wake up feeling like I have been hit by a truck. Or I could be kept awake by pain or insomnia all night and function no differently the next day. Sometimes I wish I was simply tired. 2. What you see is not what it appears to be. CFS is an invisible illness. Looking good doesn’t equal feeling good. I often wish people would see past the well-presented, mostly articulate and smiling woman in front of them. Even close family and friends haven’t seen the full extent of this disease on my life, especially when my symptoms flare in full force. You won’t see me out of the house when this is the case. If, however, I have enough energy to go out on a certain day, I will factor in the energy required for everything from dressing well to putting makeup on to cover the bags under my eyes. What you won’t see is the five minutes I sat on the floor of the shower when standing in the heat got too much. The three times I had to lay down to rest before leaving the house. The pain throbbing through my body as I moved, and the headache pounding right behind my eyes as I tried to keep up with the conversation around me. You won’t see the rest of the afternoon I spent in bed after being out of the house for just an hour. 3. The battle takes place every day. With a fatigue-based disease such as CFS, a person only has a certain pool of cognitive, physical and emotional energy that can be accessed each day. Most days, I hope this energy reservoir will extend to having a shower, dressing and eating. But some days it won’t. I have long since outsourced my shopping, cleaning, washing and the majority of my cooking. Some days I run out of energy to eat. Other days I can get out and have a coffee with a friend. Then there is the countless medical appointments that need to be endured. It’s about finding balance, making choices about what I will use my energy on and then dealing with the consequences if I use up too much energy. If I use too much energy, the delayed fatigue will kick in, my body will crash and I will be unable to do anything besides lying in bed for many hours or days. Unfortunately, there are unexpected curve balls, and the carefully balanced week or day gets thrown out the window. Instead, you’re left trying to make your energy ends meet while rapidly trying to steal energy for the days ahead. 4. It’s expensive. I’m not just talking about the financial strain of medical bills, medication, supplements, specific diet and being too unwell to work. I’m talking about the huge cost on the rest of your life. It can take a toll it on your career or dreams, as others around you get the promotion you always wanted or get married while you find it difficult just to make it out of bed each day. Then there’s the cost of not being able to care for children, spouses, family and friends. Not being able to be physically present to witness special moments in the lives of those close to you. The strain on relationships when you feel you just need to keep taking and not being able to give in return. Friendships drift apart since you have to keep turning down invites. Soon, they stop asking altogether. Lastly, there’s the cost on your self-esteem, as the once fit and healthy body gains weight, reacts to medication and may only be able to walk as far as the mailbox each day. 5. You can’t do it alone. You can’t survive chronic fatigue syndrome alone. It’s lonely, it’s isolating and it’s a battle each and every day. People don’t buy you flowers when you have a chronic illness, and people can get sick of hearing about a disease that continues to affect your life day in and day out. You need people on your side. People who are willing to be in there for the long haul. You need supportive friends and family who are happy doing your washing, who will still drop meals off three years into your illness, who give you lifts and sit on the couch eating tasteless, cheeseless gluten-free pizza with you. You need text messages and prayers. You need friends reminding you of your hope. You need people who look past your “I’m fine” responses and see the truth. You need medical professionals who are willing to fight alongside you, never doubting the disease and it’s huge impact on your life. You need people who understand chronic fatigue syndrome. People who get it. This is what I wish for. Follow this journey on Make It, Bake It, Fake It.

Kate Eastman

Why My Life With a Chronic Illness Is a Lot Like a Banana

Sometimes I feel like my life with a chronic illness is a lot like a banana. I’m not talking about the superfood, power-inducing, on-the-run snack, I’m talking about a banana that’s been bruised, blackened and abandoned in the fruit bowl. Over the years, we slowly begin to build up layers of identity around us. Career, social status, health, beauty, fitness, etc. What this presents, if you will allow me, is the image of a perfectly formed banana. However, when chronic illness hits (in my case, chronic fatigue syndrome), you and your identity might become damaged, bruised and blackened. The first to go is your healthy self. This is when that layer of protection around you is peeled back, a layer I’d always taken for granted. You’re no longer a healthy individual. You’re in pain, and you might feel riddled with guilt and doubted by those around you, even those in the medical profession. As yet another doctor tells you they can’t find anything wrong and maybe it’s psychological, bruises begin to appear on your now unprotected body. Then fitness, body image and self-esteem get peeled back. Maybe you’ve gained or lost weight. You’ve gone from training for marathons to being out of breath just walking from your bed to the bathroom. You could look physically sick. Or if you have an invisible illness, you look fine on the outside, but no one truly knows how awful you feel on the inside and how much makeup was required to cover the bags under your eyes. You feel beaten and defeated. Bruise. Any social life you once had might get stripped away as you enter the land of hibernation and Netflix. Your social standing you once wrapped tightly around you is gone, along with a lot of the fun in your life. Another bruise. Perhaps the layer of your identity tied to your career disappears. It might be hard to continue being a successful, powerful, high-achieving colleague. You’re feeling less and less of who you were. Bruise. Maybe you can no longer shop for yourself, clean your house, cook your own dinner or live independently. You feel like all of who you once were is gone. You’re now dependent on others. Who you were and what you thought defined you have been stripped away. Bruise, bruise, bruise. As the world moves on around you and your friends earn promotions, get married, have babies or travel the world, maybe you begin to feel even more like that last bruised banana sitting in the fruit bowl. However, the story doesn’t end there. Despite chronic illness stripping away everything you once held dearly, you slowly begin to realize your identity hasn’t actually disappeared. Yes, it has changed, and it has shifted from what society perceives your identity should be, but it’s still there. You are you! You’re an individual who is fearfully and wonderfully made. You’re an awesome superfood with purpose and hope. Even if you feel like a bruised banana, there’s so much beauty in who you are and so much hope. When you’re in that place, you might not be able to see it, but anyone around you who takes a moment to consider it can see it shining through. You’re an encouragement to others and an inspiration. You’re abundantly greater and stronger than how you may feel your chronic illness has changed you. So keep on fighting; you’re truly worth it. And, really, when you think about it, it’s the bruised and blackened bananas that without a doubt make the best banana bread! Follow this journey on Make It, Bake It, Fake It. The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.

Kate Eastman

To the People Who Walk With Me on My Chronic Fatigue Syndrome Journey

Dear People in My World, I just wanted to drop you a note to say thank you. Thank you for knowing, for taking the time to know a bit about the disease I have. Thank you for knowing that having Chronic Fatigue Syndrome doesn’t mean I’m just tired all the time. Thank you for knowing that the nausea is constant, that I am out of breath lying in bed, that I am dizzy all the time and that my body just hurts… and that this is on a good day. Thank you for knowing that the person you see in front of you, me, is constantly living a lie to exist in this world. Knowing that the well-made-up, well-presented me actually spent ages putting my makeup on to cover the bags under my eyes, or that I needed to lie down after having a shower, and after getting dressed and again before walking out the door. Thank you for your understanding. Thank you for understanding that even though I might not talk about it often or if I look like I am getting on with life, I’m still unwell. Thank you for getting that this is what life with an invisible illness is all about. Thank you for understanding that I’m doing my best and that to do my best comes with sacrifice, pain and heartache, because to meet that deadline or to go out tonight means tomorrow may be spent in bed. Thank you for seeing that each and every task I do in a day needs to be measured and weighed to see if it is worthy of the energy required. Thank you for asking. Thank you for asking if I’m actually okay and listening for a real response. For specifically asking about my needs, and what practically you can do to help. Thank you for asking what time you can come over to fold my laundry or bring me a meal, because without that my clothes will live in a washing basket for weeks, or I won’t bother with dinner because eating the meal itself is exhausting, let alone the thought of preparing the food. Thank you for advising. Thank you for seeing into my life and looking at where I am and my situation and, out of the care you have for me, speaking into my life. Thank you for the fact that this advice is specific and well intentioned, not based on generalized statements or thoughts about the disease I have or the way I’m managing it. Thank you for offering advice only after you’ve walked in my shoes or spent the time considering my shoes. Thank you for doing your best to continue to include me, even when time and time again I need to say no or cancel at the last minute. Thank you for picking me up and dropping me home, even when it’s out of the way. Thank you for dropping in for coffee or doing my shopping. Thank you for coming to sit on the couch with me and share a gluten- and dairy-free pizza (and not complaining as we eat cardboard)! Thank you for listening to me through my tears when it’s all become too much. Thank you for listening to me explain the latest treatment or life plan. Thank you for listening to me complain, cry, rant and talk myself in circles. Thank you for decoding my word-finding difficulties and my constant brain fog. Thank you for remembering important appointments and checking how they went. Thank you for encouraging me with your texts and your kind words. Thank you for encouraging me with small gifts and passing comments. Thank you for encouraging me to keep my eyes on heaven and grow in my joy within the pain. Thank you for your compassion, your kindness, your joy, your prayers, your fun and your concern that shines through all of the above. Thank you for being you. Thank you for reading this. Yours gratefully, Kate (the girl with the invisible illness) A version of this post was originally published on Make It, Bake It, Fake It. The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines. Want to end the stigma around chronic illness? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night. Lead photo source: Thinkstock Images

Kate Eastman

What It Feels Like to Live With Chronic Fatigue

Many people have asked me what having chronic fatigue syndrome (CFS) is like or what it feels like. Sometimes, they just presume what it’s like. Sometimes people assume I must feel tired all the time and just need more sleep. However, honestly, this is far from the truth. Deep below the relatively “normal” person you may see in front of you is a real tiredness that is so much more than you could ever imagine. Today, if you will come with me, I am going to take you on a journey through your own experiences and hope that in just a small way, it will give you a further peek into life of just one person with CFS. I would say I want you to close your eyes and imagine, but if you do that you can’t read what I am saying. So, with your eyes wide open, take a moment to think about the times in your life when you have been the most tired. Was it after a night when your child woke every 45 minutes without fail? Was it the morning after an all-nighter to get a university assignment done and dusted? Was it after a sleepover at a friend’s house when you were a teenager? Was it after running your first half marathon, Tough Mudder or Spartan race? Was it the evening after sitting a whole day examination? Was it after a week of teaching a new kindergarten class, when you just got home and collapsed on the couch? Take yourself to that time. How did you feel? Yes, you were tired, but what did tired feel like? Were you walking around in autopilot, just going through the motions of what you needed to do? Brushing your teeth and eating your breakfast (probably in that order) without the energy to lift the food or the brush to your mouth, but knowing you needed to do it? Were you eating for the sake of eating, even though you weren’t hungry and the thought of food made you nauseous? Was there a dull headache that just persisted throughout the day? Was it not quite trusting your judgement and second-guessing yourself as you drove into university to drop the assignment off? Did you make a wrong turn on a trip you had done hundreds of times? Did it feel like your spatial awareness was kind of off as you bumped into chairs or people as you walked down the sidewalk? Was it the feeling of being highly sensitive to any noise, smell or to the person who said or did the smallest thing wrong? Did you find yourself snapping or crying with no real reason, as those things that wouldn’t have normally annoyed or upset you became major stressors? Was it the feeling of adrenaline after the race? The surge of breathlessness, the dizziness, the muscles beginning to cramp, the deep exhaustion slowly beginning to overtake your body as the adrenaline wore off and the pain began? Were you completely and utterly brain dead after sitting the exam? Did you struggle to add up the correct change for the train trip home? Did people ask you what you had done that day, and all you could do was stare at them blankly? Or were you collapsed on the couch unable to contemplate lifting your arms to reach the glass of wine on the coffee table? Did you get a deep feeling of heavy limbs that even a glass of wine after a long week can’t remove? Fatigue is more than just tiredness. It encompasses emotional, cognitive and physical factors. It encompasses all of your life. The combined description of the feeling of tired above would be the baseline, the everyday, for someone with chronic fatigue syndrome. It’s as if the brain has switched a switch and recreated a new normal. A new normal where mental clarity, spatial awareness, physical wellbeing and emotional stability are out the window. A new normal where you can feel out of breath and dizzy whilst lying in bed. A new normal where your limbs now weigh a ton. A new normal where your body is in pain constantly. A new normal where you wished you just felt tired or that a good night’s sleep would make a difference. This is what being tired (fatigued) means to a person with CFS. But I have hope, a hope that is bigger than how I feel. A hope that sustains me each and every day: I lie down and sleep; I wake again, because the Lord sustains me (Psalm 3:5). Please Note: I have people hesitant to tell me they are tired or they are shattered after a long night, and then follow it up with, “But not as tired as you must be,” as if somehow they have no right to complain or be tired. Could I please let you know I have the upmost empathy for anyone who is tired for any reason? Please don’t feel like you are complaining, because being tired is exhausting. A version of this originally appeared on Make It, Bake It, Fake It. Want to celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.