What Sleeping Is Like When You Have a Chronic Health Condition

33k
33k
55

For people battling chronic disease, sleep is a complicated thing. On one hand, we often don’t get much of it on an average basis. Or, at least, not quality sleep. On the other hand, there are folks with conditions like depression, or those on medications that cause drowsiness, who sleep a lot. Our relationship with sleep is one where we regularly swap between not getting enough and getting what many people call “too much.”

I can’t count the number of times people tell me I’m lazy because I sleep 10 hours a night. Or the number of times people claim I’m lucky that I “get to sleep so much.” I understand that being able to sleep 10 hours a night might seem like a wild fantasy to many folks who only get to “sleep in” maybe a day or two a week, but for us, it’s necessary.

Using my own experiences as an example, I typically have to be in bed for around nine or 10 hours to wake up functional. If I take my medication to get to sleep, I might be in bed for 12. Now, I use the term “in bed” because a lot of that time, I’m awake. Unless I’ve nuked myself into REM, I toss and turn for at least an hour while I try to find a comfortable position. I then fall into a restless sleep for a few hours, rinse, and repeat. And that’s on a good day.

On a bad day (like last night), I am in too much pain to sleep even with my medication. I went to bed around 1 a.m. and tossed and turned and finally relented and got out of bed at 6 a.m. I went back to bed around 8 a.m and got some semblance of sleep until 1 p.m. when my cats decided it was time to wake up. That’s 12 hours. Half a day “wasted” in a futile pursuit of my own magical unicorn. These bad days happen more often than I like to admit.

Other times, I can’t stay awake. I get eight hours of sleep, wake up, can’t function or think because I’m either medicated or my body is so tired from not sleeping well the rest of the time, and I roll over and close my eyes for another three. When I finally do get up, I may lie down for a nap later.

My husband, God bless him, finds this frustrating because it inhibits his ability to plan to accomplish things the next day. Being disabled himself, he understands, but it’s frustrating to never know whether or not I’ll be functional until I open my eyes. He doesn’t treat me badly because of it, but I know it is difficult. It’s not easy for me either, because when I can’t accomplish things I committed to, I feel like a failure. It also means I don’t get many of the things I need to done.

There are many flavors of this particular hell that go around with folks who have chronic conditions, and each of us has different ways of handling the situation. It never gets easier, either, because we’re either too sleep-deprived to be human or we’re out like a dead thing because our bodies have finally given up the ghost and let us rest.

All of us have people in our lives who just don’t get this whole sleep thing. They can go to bed, fall asleep in 15 or 20 minutes, and get up in seven or eight hours and go about their business. To them, who live lives unfettered by this complicated relationship with sleep we have, it seems like we’re somehow missing the mark. I can’t tell you how many times I’ve heard well-intentioned friends postulate that I feel so crappy all the time because I sleep too much. I appreciate their thoughts and intentions. Really, I do. However, they couldn’t be further from the truth. I sleep that much because most of the sleep I get doesn’t reach REM. That space we need in order to function.

Unless that person is your doctor (and even then, sometimes), don’t let the rest of the world tell you how much sleep you should or shouldn’t be getting. Your body, usually, knows what it needs. Don’t let anyone tell you that medicating yourself in order to sleep is somehow cheapening you. And please, please don’t let them make you believe you’re lazy because you sleep however you do. Many of them mean well, but they just don’t understand what sleep is like for us. You keep doing whatever it is you need to do and take care of yourself with the guide and care of your physicians. Take care of whatever it is you need to, and don’t apologize for it. You are who you are, and that’s OK.

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

33k
33k
55
TOPICS
JOIN THE CONVERSATION

'Losing Yourself' After a Chronic Illness Diagnosis

231
231
3

You walked into the doctor and heard the words you will always remember: “You have *insert rare condition*.” In an instant your world turned upside down. You were happy for answers, yet you simultaneously knew your life would never be the same. Unfortunately, it never will be.

One of the biggest aspects of a new diagnosis is losing yourself. You lose hobbies and loves and you push people away. Your life goes from days in the mall to days in doctors’ offices praying for answers. Instead of going out on dates, you go out to specialists, excited at the prospect of treatments.

Depending on the illness, you will probably lose physical activity to some extent. It is devastating to be physically impacted by a chronic illness. You learn to pick and choose what you can do every day. You cannot do everything you want to anymore, so you have to make the hard choices. You may go to homecoming, but you cannot handle the after-party. A boy may ask you on a date, but you may only be able to stay in and watch a movie. It’s learning to make compromises in life on the things you should not realistically have to compromise on. You will come out on the other side, though. You will find a new identity and learn to be the person with a chronic illness rather than the chronically ill person. Your illness will become a huge part of your life, but it also will not define you.

The best piece of advice I can give you is to hold on to your old self, but accept that eventually you may lose that person. I am at the point where I have lost my old self, but I have also found a new person. Sure, I still have my brains and my compassion from before, but I am no longer the cheerleader. Rather, I am the cheerleading coach, chronic illness advocate, the girl learning sign language, the political volunteer and a million other identities I have acquired. Last night I was upset realizing I had lost that old person. I can no longer remember living without pain. I can no longer remember the full joy and freedom of cheering. I can no longer remember what it is like to be healthy. And yet, I came out the other side, and so can you.

It will be a process, but I promise you can redefine yourself. Educate yourself on your illness, get the care you need and learn to advocate for yourself. Write about your experiences, share with the world and find what makes you truly happy. Remember the old you, but also embrace the new.

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

231
231
3
TOPICS
JOIN THE CONVERSATION

Listening to Holiday Songs Is My Coping Mechanism

30
30
1

When I need a pick-me-up, or just want to have a warm and fuzzy feeling inside, I put on my holiday playlist of a measly 300 songs. It might seem odd, because although a lot of people enjoy holiday tunes, they tend to only want to listen to it one month out of the year, two at max. But I can really start getting into it in September most years, though I did hold out until October this year (no one congratulated me).

I started this habit in college. I wasn’t even ill then, just extremely stressed out. It would annoy my friends and family (still does) but I really didn’t care. I could sing and hum my way through “Sleigh Ride” and nothing was going to stop me. When the chronic illness came, something else came with it: stress. So of course I took my coping mechanism from before and applied it to what I experience now.

Who doesn’t like to imagine themselves walking in a winter wonderland? Or sitting by a delightful fire? Or even hearing those sleigh bells jingling ring ting tingling too? They all elicit enjoyable memories for me; yearly gatherings of friends and family, playing in the snow, ringing a bell to raise money for the homeless, making gifts and writing cards for my favorite people, and being a wide-eyed 5-year-old opening a Barbie that was my size on Christmas day sent all the way across the country from Grandma and Grandpa. And even though I may have been a little zombie-ish through the last few holiday seasons, I still appreciate the good memories and still find joy in the more current ones.

family photo on christmas eve
Bradley (center, seated) and her family on Christmas Eve.

When I feel low, I try to think high. (No not that kind of high!) So to lift my spirits I put on my
holiday playlist, sing along to the songs as best I can and push the depressing emotions aside.  Heck, even if I’m not feeling down I put them on just to accentuate my happiness or give me a little bit more pep. So even though it may not be the season to feel jolly and joyous, I will belt out that “I want to wish you a Merry Christmas from the bottom of my heart!“

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

30
30
1
JOIN THE CONVERSATION

Why I Want You to Ask Me All Your Honest Questions About My Illness

89
89
0

Though I have read many articles, I have never seen one that encourages conversation between someone who is chronically ill and someone who isn’t. Most articles I have stumbled upon cover the basics of what you shouldn’t say to someone with a chronic illness in conversation. I want to switch up the stigma a bit and let readers know that not everyone who is chronically ill wears their heart on their sleeve, and I personally do not become upset when someone looks at me and says, “You don’t look sick.”

Since I am from a small town and fighting a major chronic illness, everyone knows me and knows my story. To say I can’t go out without having to answer a few basic chronic illness questions such as, “How are you feeling?” or “What’s been going on with your illness?” is no exaggeration. Occasionally I have even found myself talking about the nasty parts of my chronic illness such as vomit, bowel movements and blood with people right in the dairy aisle of the grocery store.

But here’s the plot twist: I love it! I love when people stop me no matter where I am to discuss what I am going through or have been through with my chronic illness. I feel that through this illness, it has become my sole goal to reach others and spread awareness.

I want it to be my mission to reach others with my story and let them know that life gets better – mentally, physically and chronically.

Those people who stop me to ask about what I am going through make my day. Sometimes all I need in my day-to-day battle with this illness is to know someone cares, to know I have a support system that’s far bigger and greater than this illness and to know people are interested in where I have been and where I am going in life. This speaks volumes!

If I could sit down and say anything to those who know someone fighting a chronic illness, it would be to say what you need to say. If you are involved in what we are going through and you want to know more, say so! Ask me whatever is on your mind. I feel it is my goal to spread awareness and I can only do that through communication with others which mainly stems from answering questions I am asked. If you see someone you know out in public and you know they’re battling an illness, don’t be afraid to approach them and ask them how they’re doing and share encouraging words with them. People with chronic illness are made with tough skin because we often hear devastating things regarding our health, so you stopping us and sharing your love and curiosity with us might make our day.

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

89
89
0
TOPICS
JOIN THE CONVERSATION

12 Things to Keep in Mind About Online Friendships When You’re Chronically Ill

41
41
0

For many of us, myself included, chronic illness also means adjusting to various limitations and personal losses. It’s not easy. 

Among the many things we may have to cope with can include the loss of friendships and a reliance on the internet to keep us in touch with the outside world.

The use of social media has certainly helped the plight of the chronically ill a great deal, but it also has opened up a new area of vulnerability and potential difficulties. 

After going through the loss of many former friendships, we often have to piece together new ones with the resources we have at hand. Often that means we have to try to reach out to online support groups to form connections with those who may also be affected with similar challenges

Many wonderful new friendships can be forged without ever having to leave our sick beds. However, we are also at our most vulnerable at this time, so it can make us invest ourselves very quickly in the search to make new friends and feel valued again. Sometimes we can forget that genuine friendships will still take time despite sharing some medical and health issues.

Real
 friendships still require mutual respect, acceptance, kindness, honesty, boundaries and patience. Even though it may be much more accessible to forge online friendships, it can have some challenges when you aren’t able to have a face-to-face meeting with someone. You can miss out on a lot of information, impressions and perceptions that you may need when you meet someone.

We can also forget that, similar to when meeting people in the flesh, we aren’t going to connect with everyone. Not everyone is meant to become our closest and dearest friends.

Even if we are eager to make new connections and fill some emotional gaps, there is no easy way to describe some of the challenges for those who have long-term health issues. It can affect every part of your life, including your social life.

The online friendship can be both highly rewarding and highly painful. You can feel very blessed by friendships with those who have an understanding of some of the difficulties you may face, but you can also feel deeply saddened when those people say (or write) things that hurt us — intentionally or not. We can often feel especially emotionally vulnerable and exposed by our diseases and conditions.

The new age of communications and interactions also requires realistic expectations and etiquette. Here are some points that I would like to suggest:

1. We can’t assume we know someone or their nature and character without the benefit of time and evidence. Assuming we know someone because we have talked online and in chat rooms is very naive and is not be in our best interests.

2. We can easily misunderstand something that is written or not written as we don’t have the benefit of voice inflections and connotations that face-to-face communication allows. (Emotions are still things that are difficult to express online even if we do have emojis.)

3. We may miss a lot of the emotion behind online interactions and communication because we can’t see those feelings for ourselves, and we can miss those subtle cues and appear insensitive. It’s best not to assume someone knows how you’re feeling at the time.

4. We can be distracted if we aren’t well enough to communicate and therefore miss some important events and points in the online communications, especially if we’re in pain or experiencing a flare.

5. We can be misled as to how much our online acquaintance is revealing. And we can ask too much of the online friend too early. Remember that you are essentially strangers until you know their friends/family, their history and boundaries.

6. We can overshare and compromise a newly forming friendship by imparting too much information too soon.

7. We need to respect that everyone has their own personalities and priorities even if we don’t know or see these things in the flesh. We’re all different and a good friendship respects those differences.

8. We should still observe the niceties and politeness you would exercise in a face-to-face situation. I believe they’re still important and indispensable, even in the digital era.

9. Don’t assume you know a person. Ever. It is far wiser to assume nothing. Even if we do truly want to get to know someone better. Trust still needs to be earned.

10. Don’t change who you are. Your personality and character are still who you are. You shouldn’t have to shed that because of the online circumstances or to forge new friends. The best friendships are still those who accept you for who you truly are.

11. Don’t feel you can’t end an online friendship because you don’t have your old friends anymore. The chronically ill have a resilience and a strength forged by our new lives, and we know only too well how precious life and time are. If you find you are not enjoying the interaction, don’t feel you have to sustain it. There are many experiences and people out there online. Some people/groups will resonate with you and others won’t.

12. Don’t ever participate or interact with cyberbullies. Ever. If someone offends, harasses, is rude, spams, threatens, tries to intimidate, berates or makes you feel picked on, the best thing is to not participate. And if it continues, you should report it. Find out your legal rights to redress the behavior. It is not only morally wrong, it’s illegal! 

Many people enjoy the anonymity that the internet provides to protect them and allow them to do and say anything that they want, sometimes cowardly. It is one of the sadder aspects of the digital age, but it really does say more about them and who they are.

Try not to take these things personally. It’s not a reflection of you or your value. Even though we’re sick, ill, disabled or physically compromised, we still have a right to a happy life and enjoyable friendships. 

We may have a little more learning and navigating to do, but I think we can find some truly rewarding and meaningful connections. They just take time and patience. 

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

Lead photo source: Thinkstock Images

41
41
0

8 Things I Learned the Hard Way After My Diagnosis

382
382
0

I had my first diagnosis in 2009 and felt that I instantly became stigmatized due to my invisible illness. I went home and was extremely sick long term. I was surrounded by mess and didn’t listen to my body because I thought I could “push through it.” I often explained myself to people who seemed committed to not getting it. Here’s what I learned the hard way, a few illness later:

1. Empowerment is possible because you don’t have to be passive. I think too often people believe you need to get your diagnosis, then you can go home and get accustomed to being sick quite possibly for the rest of your life. I don’t think it has to be this way.

2. You have the right to get as many answers as you like. When you are in a doctor’s appointment, you are entitled to get a quick lesson on your disease and biology. Your doctor has the knowledge, so why not ask about the role of your immune system in your disease or exactly how a specific drug is supposed to help you? Get the details!

3. Take responsibility for being informed. For example, you can look up clinicaltrials.gov or clinicaltrials.gov.au to see the latest research that is being done on your disease and join an organization that can provide you with the latest info. Sometimes a clinical trial will be carried out on a product you can buy quite easily.

4. Become proactive. There will be days when it’s not possible. Life never really goes back to the way it was pre-illness, but by accepting your limitations you can work within them and get a few things done. This might be by looking into the National Disability Insurance Scheme (if you’re in Australia) or finding somebody who can advocate on your behalf. Maybe even paying a neighbor to come in and do some cleaning.

5. Stop explaining yourself to people who don’t want to understand, whether it’s friends, family or whoever. I’ll never quite understand how some people decide which illness are acceptable and which aren’t. People with more mainstream and traditional diseases tend to not have justify their days in bed and I’m not prepared to start an advertising campaign for my collection of unconventional illnesses.

6. Even as a mother, it is possible  to overcome some challenges. Of course, it’s not always possible but I can encourage and motivate my family from the lounge.

7. It’s OK to change doctors. It’s OK to complain. It’s OK to have a voice and make yourself heard.

8. I believe alternative medicine is worth a try. Why not consider treating what naturopaths believe to be the general cause of illness? It won’t work for everybody but I don’t want to assume it won’t work for me.

Follow this journey on Waking Up to Health.

382
382
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.