The Hidden Truths of My Chronic Illness

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It is no secret to those that know me that I had a major operation in April 2015. If you don’t know that I had my rectum removed and my anus sewn shut, then it’s likely that you haven’t been my friend for very long, because one thing I am not is secretive about it. It is also no secret that I have been taking very strong prescription pain medications, which I am currently trying to wean myself off of. My life is an open book. I share stories and photos regularly online about what is happening in my life on a day-to-day basis.

Except it isn’t, and I don’t.

I share what I want people to know. I post the photos that I want people to see. I tell the story that I want people to hear. I am “open” and “honest” to a degree.

About a year ago, I shared a photograph entitled “Batch cooking.” It was of an array of dishes that I had spent the day preparing for my family and a friend who had had a premature baby. There was an obscene amount of food. This photo gained likes and comments galore. It told a story of a woman who has her shit together, so much so that she can cook two weeks worth of food in one day.

That picture also tells another story. The story that I don’t tell, don’t share: the story of a woman who cooks two weeks worth of food in one day because that is possibly the one day out of the month that she will be well enough to cook. So she fills her freezer.

In the past 21 days, I have cooked from scratch five times for my partner and I. Our main evening meals have consisted of pre-cooked meals from the freezer (some batches cooked by me, others by the supermarket), takeout, sandwiches, cereal and porridge, cheese on crackers, chips, biscuits, yogurt or nothing at all.

My children have a home-cooked meal most evenings; however, they mainly consist of things that I can take from the freezer and throw into the oven: pre-cooked lasagna, sausage rolls, chicken nuggets (homemade, batch-cooked and frozen) or pasta with bacon pieces and tomato sauce, always cooked in bulk so they can have it for more than one main meal. Convenience isn’t a luxury, it’s a necessity. And I have learned how to make healthy, child-friendly convenience foods in bulk. I’ve had to.

My partner is not so fortunate or well looked after.

It also hasn’t been a secret that I have started performing again. I appeared in Jesus Christ Superstar last April, Rent in December, I wrote and performed my play, Kat’s Bag of Crap, in February and I am appearing in Bad Girls the Musical next week.

What I haven’t shared is my partner’s reluctance in my committing to all of these shows. He was worried, and continues to worry, that I have taken on too much. That I wouldn’t be/am not well enough/am not strong enough to manage the rehearsals and performances.

Of course I fought him on it. Insisted that I was fine. That I was getting better. That I could cope.

He was right to be concerned. Because I am barely strong enough and managing. I am holding on by the skin of my teeth.

Although I am making it to and through rehearsals and am enjoying myself immensely, I am also in a considerable amount of pain during and after each and every one.

The thing is, I am used to being in pain. On any given day, my pain level ranges from two out of 10 to seven out of 10. Every. Single. Day. My baseline, my normal pain level, where zero is no pain, and 10 is unbearable, take-me-to-the-hospital-now-because-I-am-about-to-die kind of pain is three out of 10. This is with two different types of kickass opiate pain relief I am constantly on. I am almost never pain free. When I hit six out of 10 I take something to help me; otherwise, I just get on with it. Pain is normal for me.

I am currently in bed, doing nothing but typing, and my pain is at a five, but I’m happy because an hour ago I was at six. So yes, I am rehearsing three times a week. Yes, I am taking part in a show. I am also taking opiate pain relief before, often during and always after each and every rehearsal and performance.

I haven’t told anybody this truth. I am petrified that I won’t be able to make it through the eight performances I have to do next week (11 if you include dress and technical rehearsals). I know that once I am on the stage, adrenaline and excitement will get me through each show, but I have to make it out of my bed, into the shower, out of the house and to the theater before the adrenaline can do its job. Today, I have struggled to get out of bed to use the bathroom.

Another non-secret is that I am looking better than I have looked in decades. My exterior is banging right now. Curves in all the right places, hair behaving, tummy decreasing. I have a waist. My levels of narcissism are rising at an alarming rate. Constant selfies flooding your timelines of me in lovely dresses, off to church. What I don’t share is that I dress up, go to church, leave church, go to my Mum’s house, change back into my pajamas and sleep on her sofa while she cooks lunch. I wake up, eat, sleep some more, drive home, give my children a light dinner, put them to bed and go back to bed myself. Every single Sunday I spend 9:00 a.m. – 12:00 p.m. looking fantastic. Three hours. That’s it.

I have had to have a nap every single day this week. How my partner puts up with me is anybody’s guess.

With all that said, I maintain that I am getting better. I am happier than I have been in years. My good days may not have increased in quantity. I may still spend a third of the year in my pajamas, unable to function due to debilitating fatigue. I’m not able to shower, dress myself, cook for my family, leave the house or lift my head from my pillow. Even though I often still have to use a commode in my bedroom to urinate because the stairs are too much for me to manage… Even though my partner has to remind me to shower and eat on the days when all I can do is sleep… Even though my bedroom is often the only room I see for days at a time…my quality of life on my good days is the highest it has been in decades.

I am no longer simply surviving, I am living. Sadly though, it hurts to live.

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Thinkstock photo via tommaso79.

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Why Chronic Illness Feels Like a Ball and Chain Shackled to My Ankle

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Picture this: You wake up one morning and put you feet on the floor. Suddenly you look down and see that a ball and chain have been shackled around an ankle. For the sake of this exercise, we’ll pretend this isn’t too far out of the realm of comfort and you do not need to search the house for burglars. So, you get up and brush your teeth, shower, eat, whatever your morning routine is.

By the time you head to work you are already noticing the pain from dragging this shackle around, but there isn’t anything you can do about it, so you just keep going. At work, coworkers notice your ball and chain immediately and ask if they can help. Your mother wants to take it from you and wear it herself. Your friends want to just lift it for a while to give you a break. But those aren’t options because this shackle has been given to you, and only you.

You make it through your day the best you can and by the time five o’clock rolls around, you can’t wait to get home and massage your poor aching leg and back, since the pain has creeped farther up your body. Maybe even take a nice hot bath.

But, you get home, and everything still needs to be taken care of. Bills still need to be paid, children need fed and be helped with homework, housework and animals need tended to, spouses still need to communicate. That’s when you say, “I’ve really done all I can do today and I need to go lie down.” That’s the moment the ball and chain wins for the day.

Now imagine that this is your day every single day of your life.

The ball and chain you wake up with each morning may vary in size, but it is always present. There are days when the shackle won’t allow you to get out of bed and other times you can manage to work and still live life with relatively little thought given to your companion of iron.

The coworkers that were so alarmed and willing to help out in the beginning are now just getting frustrated that you still aren’t rid of the thing and they’re resenting the fact that your work may be slower. Your friends have dwindled to just a few when the others got fed up with your last minute cancellations and the ones that remain are generally supportive, but without dragging your chain, no one else can truly understand. Your family is frustrated because they want the person you used to be back.

You now feel like a huge burden to everyone around you. You feel guilty for needing help, guilty for being this person with this shackle, guilty that you haven’t been able to reach the goals you set out for yourself…And for being financially dependent on someone else because that job of yours just became too much to handle. The ball and chain just got too heavy to heave all the way to the office, deal with it all day, and then drag it back home.

Well-meaning strangers may even ask you if you’ve tried things, like a drill or screwdriver, to remove the chain.

Now imagine that ball and chain is invisible.

To everyone else you look totally healthy. You are the same person as before and are expected to perform as such. Reaching understanding from those you come into contact with is difficult because the only thing they have to go on is your word. They may say you don’t look like someone with an invisible ball and chain. Or that it must be something you’re doing because invisible shackles don’t exist.

They may say that its in your mind and a good attitude is all you need. They may tell you that you can heal your body by going vegan, paleo or gluten free and and the list goes on and on. Doctors may say, “Hm. Yes, it looks like you might have an invisible ball and chain, but its not one I’ve seen before. You’ll need a shackle specialist.”

Then, the specialist may say, “I have no idea how that got there, but have you tried gaining/losing weight?”

You might hear lots of stories of someone who knows someone who had a second cousin with a similar thing and how she cured herself with rainbows and butterflies.

You might think that once you have a name for the chain, things will improve. Perhaps things do get better in some ways but worse in others. Your doctor may tell you, “I can’t remove the shackle but I can try to make it bearable for you. Oh, and I can’t treat the pain because it’s a chronic condition and you’ll become an addict. However, we can try to make more days small shackle days so you can live more of a life.”

You might hear people tell you that your particular ball and chain doesn’t really exist and that its something people say to get attention. A name does, however, help guide the weight shrinking protocol and helps you find people going through the same thing.

Some years later you may look to the past and wonder how in the world your life got to this point since that dreadful morning when you put your feet on the floor and noticed the shackle for the first time. You look down and your constant companion is still there. Still dragging you down, stealing your energy, your job, your social life, your friends, your independence… And you realize that this is as good as it gets. There is not magic spell to cast away your ball and chain. It is here to stay and you just have to learn to live the best life you can while dragging it around. Everything is hard. Everything takes ten times more effort than it should. Everything is exhausting, but you put your feet on the floor the next morning and you get out of bed. You face another day.

This is what it feels like to have an invisible illness. Unless you’ve lived it, there is no way to understand the fatigue that comes along with chronic pain. The depression and grief of losing not only friends and family relationships, but also the person you were before. The isolation of trying to give yourself time to rest. The brain fog that comes along with the pain and from the treatments.

There is no way to comprehend that, while nothing has changed much on the outside, your heart has been broken hundreds of times from disappointment of failed treatments, letting friends down, letting family down…All the while wondering if it is your fault.

The anxiety of wondering how on earth you’re going to support yourself financially or if your doctor will believe you about your burden. There are countless symptoms of chronic illnesses that span across the board – not just pain. It’s a club you can’t be in until you’re shackled, and once you’re in, you can’t get out. I hope this can help bridge the communication gap between those in the club and those standing outside of it.

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Thinkstock Image By: retrorocket

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It's OK to Feel Unhappy When You Live With Chronic Illness

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Last year was a rough one.

I was living abroad with a host family, caring for their children, but honestly not up to the task. I had class twice a week and began leaving early, showing up late or skipping entirely. The rest of the week, I spent my days in bed, conserving my energy, until it was time to pick up the children, and then I spent my evenings back in bed recovering from the mere one or two hours spent getting them home, bathed, fed and ready for bed.

I tried my best to help out beyond that, but it was all such a struggle that I hardly had the excess energy. The parents had wanted me to join them for dinner and on family outings, but I was rarely up for it. They tried their best to be accommodating, but just didn’t understand what I was dealing with. I hardly knew myself and whatever energy I could muster up was spent looking for and going to whatever specialists I thought might be able to help me.

Tension with the family grew and grew until finally it had to end. They gave me a few weeks to figure something out, but then I needed to go. I tried looking for jobs in the city with no luck. I tried calling my own family to ask what I should do and if they could help me get home, but couldn’t get ahold of anyone. The night before I was due to leave I was incredibly stressed and had no idea where I was going to go and how I was going to survive. I was standing in the kitchen of my basement apartment when I had a panic attack. Luckily, it wasn’t the first. The last time it had happened I’d foolishly thought I could calm myself by eating. The food got impacted in my chronically inflamed esophagus, and I ended up in the hospital. This time, once I realized what was going on, I was able to calm myself.

I ended up spending the next fours months “CouchSurfing” – staying with various people, sometimes old friends and sometimes people I’d just met. I had no privacy and I still struggled just to get to the store and get food every day. Since I never felt up to going out, my hosts never had any alone time and after a few days, almost without exception, things would become very stressful for the next few weeks until I moved on to the next place.

In September, I finally got a place of my own and in October I began working part-time. Normal for me is needing a nap to recover from showering before getting dressed. Normal for me is being drained by laying propped up, because even that requires too much energy. Last winter, I was waiting until I got better to tell the world of Facebook that I had been sick, but had beaten it. I wanted to be able to add that positive twist. I couldn’t just say “I’m not well” and leave it at that. Throughout the year I mostly avoided social media, but once I began working again I at least felt I had something I could share. But having a job took such a toll on me that I often contemplated forgoing food because the thought of dragging myself out of bed and to the store was so awful. When I tried speaking to the butcher or cashier, I was so disoriented I could hardly form a coherent sentence and would mumble so softly I could hardly be heard. I couldn’t even raise my head to make eye contact.

One day I saw someone walking with a spring in their step, alternating thrusting their arms in the air with each stride. I was so in awe that someone could have such an excess of energy to squander so frivolously.

A social life was obviously completely nonexistent. My only real interaction with people was virtual. I started sharing a bit about my illness, but the little response I got showed me they didn’t really understand. As the holidays approached my roommates would ask where I was going and I tried to find ways around admitting I had no plans. I watched everyone rejoicing online, ignoring my plight, and felt a growing bitterness.

But then I realized I shouldn’t be forcing myself to be happy when I have no reason to be. A growing body of research is showing that forcing ourselves to be positive all the time interferes with critical thinking and prevents us from addressing the problem. Armed with that knowledge, I did three things.

First, I shared a post detailing just how much I’d been struggling with the intention of distancing myself from the friends and family whose silence hurt so much. To my surprise, several others who saw my post reached out to share that they too had been struggling with invisible, chronic illness, which brought us closer.

Second, instead of only posting in support forums when I had a question, I began adding people as friends and connecting on a personal level, which provided the solace of true empathy. I could vent my frustrations and they’d chime in with their own horror stories, we’d roll our eyes and laugh. I no longer felt so alone.

Third, I resolved to commit myself to raising awareness in the hopes that understanding will breed compassion, and I felt so liberated by finally being open about my struggle.

If you too feel angry, bitter and heartbroken, don’t feel pressured to force yourself to create a happiness façade. Rather, find a community you can connect with and something you can passionately channel energy into, despite your current limitations. But most importantly, don’t fight those emotions. They’re a part of being human and if you’re struggling then those emotions are also appropriate and there’s absolutely nothing wrong with them.

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

Thinkstock photo via KatarzynaBialasiewicz.

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What You Don't Realize If You Think I'm 'Lucky' I 'Get to Stay in Bed All Day'

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Has anyone ever said to you that you’re “lucky you get to spend all day in bed” or “I’d love to get to stay in bed all day and not go to work?”

For a lot of us with chronic illnesses, this is a phrase we have heard many times. Many people who don’t have an illness or know anyone with a chronic illness have the idea that spending all day, every day in bed is a dream come true and it’s just watching Netflix, eating junk food, reading books, catching up on social media and lounging around.

This couldn’t be further from the truth. I barely have the energy most days to sit around watching Netflix or catching up on social media. My concentration has become so bad that I can barely read more than a Facebook message, let alone a book.

Some phrases and words that get said to those of us who are chronically ill can carry so much more weight to them than you could even imagine. Phrases like “You’re so lucky you get to spend all day in bed” or “You’re lucky you don’t have to go to school/work” can be hurtful and make us feel like we are choosing to live like this and that it’s our fault, which isn’t true. We don’t have a choice.

I can’t control my illnesses, trust me I’ve tried. If I could, don’t you think I’d be better by now? If I had a choice I would much rather not be battling such severe fatigue that some days my body is too exhausted to even hold up my body weight to stand or fighting against the pain which makes it hard to even move some days. I’d rather not have to take the copious amounts of medication just to help me function and to make my pain more bearable or that I have to use a wheelchair when I leave the house because my body is in too much pain and too exhausted to go further than 100 meters.

If I had the choice, I’d be in college or at uni and have a part time/weekend job if my course allowed. I’d go out socializing with my friends who I haven’t seen for months on end, I’d see my family more and go on days out/holidays with them, but unfortunately my body does not physically allow that. It simply isn’t possible for me right now.

Staying in bed each day is not a break or a chance to binge on Netflix shows and eat what you like. It’s not nice to be laying in bed each day wishing about all the things you could be doing and watching your friends go out without you. It’s not a choice for those of us who are chronically ill.

I’ll admit that before I got chronically ill and I was sick one day and had to have the day off school, yes, a day in bed was nice. But when it becomes every day and you can’t participate in normal everyday life and instead you’re laying in bed feeling too unwell to even open your eyes, then it gets extremely isolating and lonely some days.

Hopefully one day I’ll be able to go back to studying or having a job. Maybe I’ll be able to participate in normal everyday activities, but at the moment I can’t and my job right now is to look after myself.

Looking after myself doesn’t just mean making sure I eat and drink, it means remembering to take my medication, that without I would not be able to manage. It’s making sure I make it to hospital/doctor’s appointments and that I get enough rest. I have a special routine I have to follow each day that’s been specifically designed for me by my specialist. It’s so much more than people can imagine.

Some people just don’t understand that when you have a debilitating chronic illness, looking after yourself really is a full time job!

Next time you think about saying how lucky we are to stay in bed all day, remember that it’s so much more than that.

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Thinkstock photo by cyano66

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15 Truths About Your Chronically Ill Friend Who Just Texted 'I Can't Go'

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It’s a text most people with chronic health challenges have sent at some point — the text that says “I’m sorry, I can’t go” when they’re invited to hang out with friends. Maybe you had a sudden flare-up of symptoms, or aren’t feeling as well as you thought you would when you made the plans. It can be a heartbreaking text to send (after all, it’s not like you don’t want to go). And it’s not easy to convey over text how much you wanted to go and how much you still want to be a part of your friends’ lives.

So we asked our Mighty community with chronic illness to share what they wish their friends knew when they send them an “I can’t go” text. If you’re reading this because you have a friend with chronic health challenges, know that your friend’s decision not to go likely didn’t come easy, and your compassion will go a long way.

Here’s what our community told us:

1. “The text that takes them two seconds to read took me 20 minutes to send because I was frustrated with my own body and inability to make it out to see them. I want more than anything to be well enough to keep the plans I make.”

2. “I hope my best friends know that I appreciate them more than anything in the world for all those times that they offered to come over to my house, brought some food and/or treats for us to enjoy while sitting together, and proved their friendship, love and loyalty. I will never forget it.”

3. “I wouldn’t cancel if it wasn’t the best for both of us. I had to learn that the hard way rushing from one appointment to another just because I couldn’t say no. I was constantly exhausted, stopped eating altogether and I could see that the people around me couldn’t enjoy the time spent together as much as they wanted to either. I’d rather cancel and meet up on a day where we can enjoy ourselves 100 percent than meet up and be miserable.”

4.I wish they knew I have worked myself into a full blown panic attack for an hour worrying about how I’ll tell them I’m in way too much pain to even try to get in my truck and drive the ~10 miles to their house/our old neighborhood to hang out or go out.”

5. “I wish they could understand that my life is now about choices. Different choices! If I do this, how many days will I be down? If I do that how many day will I be down? What is worth being down for?”

6. “I have taken into consideration: what I have to bring with me, what mobility aid, the terrain, if there was seating available, if there was food and drink easily available or if I needed to bring some, if I could carry the pack, if I needed to bring changes of clothes, if I could have an accident, if I had a new procedure and if I was used to taking care of it or if I was competent using it, if I could use my mobility device easily, temperatures, and more. Being someone with a chronic illness, there are so many challenges that we have to take into consideration that ‘normal’ folks don’t.”

7. “I have to build up the courage and force myself to press that ‘send’ button because I feel so guilty (and like a burden) for letting them down once again… then I just lay there with my phone on my chest, eyes closed and ignore it (until I feel guilty again) when I hear that I have a response because I am too embarrassed by my body’s rebellion to read the reply. When I apologize profusely, I truly mean it.”

8. “The absolute guilt I have for normally being the one to make those plans two hours before because I was feeling good, only to have my body all the sudden not want to cooperate. It’s not I don’t like you or I’m trying to avoid you, I truly feel sick. And the guilt hurts as much as my body.”

9. “To please invite me next time anyway. Please keep inviting me every time! Loneliness is one of the worst and deepest emotions my disease has ever made me feel. Don’t leave me behind, never forget about me.”

10. “I wish they knew that I wasn’t just making excuses and that I’m not avoiding them. I wish they knew that I don’t have to energy to be out in the real world all the time or to even be social all the time.”

11. “I wish my friends knew when I finally send the text letting them know that I can’t go out that I did everything in my power to make our plans happen. I tried to convince my fatigued body and my anxiety-riddled mind that I could handle it. I do want to spend time with you. I’m not blowing you off. I was super psyched for our plans and super disappointed when reality came knocking on my door.”

12. “They’ve never actually seen me at my worst. They have no idea how much pain I’m in, how fatigued I am, how horrible I feel and look. They have no idea how much I hate canceling plans at the last moment and they have no idea that their small comment of ‘You always ditch me’ just ripped me apart inside.”

13. “Although I can’t go out with them, simply coming over to sit with me may be a better option if preparing to go out hasn’t already worn me out.”

14. “When I say that I am not feeling well, it’s the truth. I don’t say it for nothing. It’s easier to say I’m not feeling well than to explain what is really going on, and how I really feel. Or when I injure myself, it takes my body longer to heal than others. I’m not ‘milking’ it.”

15. “I don’t owe them an explanation. If they’re truly a ‘friend,’ they’ll understand. Period.”

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When My Friend Let Me Be Vulnerable During a Pain Flare at Dinner

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Right now, you’re in your room, asleep, while I’m on the couch in your living room trying to cope with my pain level skyrocketing.

It started out as a normal day, other than me having slightly low energy. I went to work, went to a doctors appointment, and then went to grab dinner with you. Dinner was great, and then when I was feeling slightly off. So, we went back to your place for a little bit.

And then the pain got worse.

There’s so much guilt that I feel in the midst of a flare up, regardless of the situation. But, I don’t think I’ve been in a spot where I couldn’t function enough to get myself home. Things went from OK to not OK very quickly, and that scares me. I haven’t ever had to be this vulnerable in front of you before. I don’t want to be a burden, and even if you’re telling me I’m not, it still is incredibly hard to have to ask for help.

Thank you for always making me feel safe and valued. It’s because of this that I can feel comfortable telling you that I need help and can’t make it back to my car tonight. It’s because I know you value me that I am able to open up to you, squeezing your hand and crying on your shoulder. It’s because I feel safe that I feel like I can ask you, “Why can’t they fix me?” I take some level of comfort in knowing you feel my pain when you say, “I don’t know.”

Thank you for listening to me apologize over and over. I really am sorry I ruined our night. Thank you for reassuring me you wouldn’t leave, and promising that you wouldn’t make me go to the hospital unless it was my decision. Thank you for listening as I said, “It’s not fair,” over and over. Thank you for telling me you weren’t mad at me and that I wasn’t a burden.

Thank you for being in both “friend mode” and “doctor mode” tonight. I feel especially torn when I talk to you about my health. While I know you and trust you above almost anyone else, I feel a sense of guilt in feeling like I’m taking advantage of the letters “M.D.” that will soon come after your name. You’ve been such a good friend since before you got into medical school, and I’m trying not to take advantage of the fact that you’re now a month away from being a doctor.

Thank you for taking care of me. You are absolutely amazing. I know that I’m a better person because you’re my friend, and I’m so grateful for that. I know that there are very few people in the world with a heart as big as yours, and I’m grateful to be a part of your life.

You’re the best.

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