A woman on a couch outside, drinking tea.

Another Saturday has come around where I’m waving off my husband and toddler who are off out for the morning, so I can have some time to rest and hopefully recharge. I know many parents probably long for a rest, but resting because you want to is very different to resting because it’s essential. A lot of people would probably think it would be lovely to have a day lying in bed or on the sofa, but when you’re suffering and in pain, it’s a very different experience. Also, it breaks my heart that I’m not going with them.

As I’m writing this, part of me feels guilty. I’m so grateful to my husband for being happy to spend time on the weekends entertaining our son. I know perhaps a lot of men wouldn’t be so understanding and genuinely pleased to spend so much time doing “kid’s stuff.” The logical part of my brain knows it’s great they have such a special bond and that my son is going to spend the morning enjoying all the physical things I would struggle to do. However, the emotional side of me feels sad. Looking back on how I used to be before getting ill, I was the kind of person who would have loved to be running around parks or going for walks up hills.

When living with a chronic illness like chronic fatigue syndrome, getting sufficient rest is essential. That often means having to miss out on things, as well as ignoring tasks that need to be done, such as cleaning the house. It can be so frustrating seeing an untidy room, yet not having the energy to do anything about it. Or, you know that if you decide to tidy it, you will have to trade it for another activity you wanted or needed to do, or worse – cause a flare-up of symptoms.

After a little cry, I get myself together and realize I have a choice. I can continue to feel bad, sad, frustrated and guilty… or I can decide to use the time wisely. I do this by making rest as positive an experience as possible. Also, getting frustrated causes a flare of symptoms in itself, so I figure it’s for the best!

So how do we go about doing this? I’m sure everyone will have their own ideas on what works for them, and I would really love to hear those… but here are my “allies” when it comes to making the best of rest!

1. Tea

I like to make myself a nice cup of my favorite tea and take the time to sit, relax and enjoy it. I find that a square (or three!) of good quality dark chocolate goes perfectly with peppermint tea – which you have to try! If I’m feeling well enough and it’s a dry day, I like to have this outside in the garden. Being in nature really helps to relax my mind and body. Otherwise, it’s the sofa or taking it up to bed. Get yourself cozy, sip, relax and enjoy! Really take the time to enjoy the experience.

2. Reading

I like to have a couple of books stored on my Kindle at the ready for reading. I love having a Kindle as it’s so light. If my arms are too tired, I can prop it up on a pillow whilst reading. I was a book lover so it took me a while to let those go, but I honestly think it’s one of my best purchases since becoming ill.

I usually have an easy fiction book on the go where I don’t have to think too hard, as well as a more thought-provoking book. A recent favorite was “The Alchemist,” which was a lovely, positive read. There’s so many fantastic bits I could quote but here is one of my favorites:

“The simple things are also the most extraordinary things, and only the wise can see them.” 

I love losing myself in a good book. It provides some much needed escapism from all the pain and suffering. Also, I may learn a thing or two, or gain a new perspective.

3. Meditation

I have found meditation to be one of the most helpful ways to relax my mind and body. It allows everything to quieten down – be it my thoughts or my symptoms. Before becoming ill, I used to be the kind of person who felt I was too busy to meditate. I now realize I missed out on creating a space in my life to relax and simply be.

These days I find meditation is essential in helping me manage my symptoms and one of the most positive things I can do when resting. Like reading, it also provides me with some much needed escapism from my symptoms.

I’m not exactly what you call the perfect meditator. Some days are easier than others. My mind can often still be busy, and I often fall asleep. However, to me, the most important thing is that my body is getting the opportunity to relax and hopefully recover a little. Even on the days where my mind is busy or I struggle to switch off from the pain, I always still feel better afterwards. In fact, many types of meditation now tell you to simply acknowledge your thoughts and pain – rather than trying to push stuff away.

There are so many different types of meditation to try, and I like to mix it up a bit by trying different methods. I find different things work on different days. There are meditation apps like “Headspace” and “Calm,” which are useful. Sometimes I simply do a search on YouTube and pick a meditation track I like the sound of! Currently I’m enjoying guided meditations by the “Honest Guys.”

4. Naps

Often after a meditation I have a little nap – if I’ve not already dozed off. Once my mind and body are more relaxed I find it easier to drift off. I usually set my alarm for 30 minutes later, as I find if I sleep much longer than this, I risk feeling worse. I find this is enough time for me to recharge a little without risking preventing sleep at nighttime. However, we’re all different and you have to do what works best for you. Just listen to your body. Some days you may need more sleep and others you’ll need less.

Usually after a nap I’ll initially feel worse. However, once I’ve had my green tea and moved around a little I find I feel the benefits. Without that time to recharge I know I’d feel a heck of a lot worse.

So there are my four favorite ways to make the best of rest. It doesn’t change the fact that I’d rather be spending time with my family, or doing something fun. However, it does help to make me feel more calm and relaxed.

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I have so much to be thankful for, even in the midst of the loss of my husband and illness that has robbed me of my former life. I have been diagnosed with chronic fatigue syndrome, fibromyalgia, insulin resistance, autonomic dysfunction, adrenal fatigue, dysbiosis, osteoporosis, hypothyroidism, MTHFR mutation and endometriosis of the digestive tract – all diagnosed after contracting a rare lung infection called Nocardia wallecei.

Prior to becoming ill, I was working 12-18-hour days as a crisis clinician for a large hospital group in Dallas and as a therapist in private practice. I was only a couple of years into my new career – one I had dreamed about my entire life – when my life came to a screeching halt. Now I spend most days on my couch, unable to do the things I used to do. My outings mainly consist of going to the pharmacy, the grocery store and to church. On the rare occasion I divert from the usual, I almost always pay for it later. Still, I’m grateful.

 

I’m grateful for the new perspective I am gaining through my illness. Being chronically ill has taught me lessons I might not otherwise have learned. I have been forced to slow down and live in the day I’m in. I’m no longer “zooming,” always thinking about the next thing on the list, multitasking. The list has now been cut down and my attention has been forcibly shortened to doing one thing at a time instead of several.

Therefore, I have gotten so much better at living each day for itself, realizing it doesn’t serve me to dwell on the what ifs, what was and what is to come. Not that I don’t think about those things, or that they aren’t always in the back of my mind or even that I don’t get overwhelmed some days. I do. I am human after all. But I’ve learned to make a conscious decision not to dwell on them. I try to acknowledge the fears and anxiety and move through them, instead of sitting in those emotions. I like to say it’s OK to have a pity party once in a while, as long as you don’t stay too long. Nobody needs a pity party hangover! And so I’m grateful for the gift of learning to live in the present while being mindful of the future.

Part of this new perspective is having to learn I no longer have complete control over my choices. Illness has a way of either making decisions for you, or forcing you to make them. Sometimes I have options, but my illness always gets a say in the decision. In fact, most of the time, my illness gets the bigger say. There are times when I override it, however. I do that knowing there will be a physical cost, but in those times, it’s worth it. I’m grateful for the brief periods of respite from my symptoms that allow me to push through and enjoy simple pleasures, even with the costs that inevitably come.

Usually, I am forced to spend my days in my house, on my couch. In my illness, I’ve had to learn how to be bored and to accept it. Most of us have difficulty with boredom, with being still. But when one doesn’t feel well, it’s imperative to make friends with boredom. There are days when my mind wants activity, but my body disagrees. That can be frustrating, but more often than not, because my body needs to be still – bored – my mind goes along with it. It takes too much energy for a mind/body competition. I’ve learned to embrace the idleness. And so I’m grateful for the gift of acceptance.

In this stillness, I’ve also learned to be more dependent on my faith. I’ve always had a strong faith. However, the quietude thrust upon me has also pushed me to connect even more with God. I’m learning to trust in a way I hadn’t in the past. This trust gives way to peace, which in turn leads to gratitude. I’m so grateful for my faith and the strength it has given me.

I gain strength not only from my faith, but also from the support of friends and family. I often read about people with chronic illness, who have lost relationships, even close relationships because of it. Being chronically ill can be draining on loved ones. I’m so fortunate my friends and family have stuck by me. It’s really quite remarkable and I don’t take it for granted. Because of my illnesses, I don’t have the energy to call them, to go out to lunch or dinner or to go shopping like we used to, with any regularity. But my family and friends still call, they still invite me to do things, they still visit, even though I often can’t reciprocate. They still ask me how I’m doing, even after two years.

My life has been fraught with difficulties: a husband who was chronically ill with several rare conditions and eventually died in 2013, following a year-and-a-half-long battle with cancer, plus financial struggles and health issues with my daughters. It seems like there is always something, yet my family and friends are ever-present. They have never made me feel like a burden. I’m blessed with a solid tribe that continues to stand by me through it all.

I’m grateful my foundation of support has never wavered in their belief in me. The thing about chronic fatigue and fibromyalgia is they are invisible illnesses. So while I can put on makeup and act like I’m “fine,” most of the time I’m not. But the outside world doesn’t know that. I know my illnesses are a mystery to most people. I hear stories about how family and friends doubt others with these conditions, about how they are made to feel like they are faking or it is psychological. Thankfully, I have never experienced that. I did hear it from a couple of doctors early on, but not from my family and friends – if they ever had those thoughts, they never said anything to me. They never made me feel as though I was a hypochondriac, or faking it, even though I don’t “look sick” (when I’m wearing makeup). And so, I’m grateful.

Finally, I’m grateful I have several doctors who believed me and followed up on my symptoms, instead of telling me, “You look good! Go back to work.” (Which is what my pulmonologist said to me in the early days of my illness. That’s when I realized makeup was masking my symptoms for him and others. Vanity has no place in illness, apparently.) I was fortunate to find doctors who not only believed me, they validated me and are treating my conditions. It took a year and a half to find them, but I am so grateful for supportive doctors. I know that is not the norm with these conditions.

For any of you who have people in your lives who don’t support you, whether it be doctors, friends or family, I urge you to limit your exposure to them (and keep searching for doctors who will listen!). Make it a priority to surround yourself with people who will lift you up and validate you. This can only aid in your healing. There is no room in chronic illness for doubters or anyone who brings you down. Your illness has that part taken care of already. Find what you can be grateful for in the midst of your hardship. You will be rewarded. It’s a small thing you can do to help yourself. Every moment of gratitude gives you points towards healing.

Because of my illness, I’ve learned to strive to be grateful. It is a conscious decision; my goal every day is to live in gratitude. I continue to try to stay in the day I’m in, trusting God’s plan for my life and putting one foot in front of the other, one day at a time, one moment at a time. I’m not always successful at it, but I will always keep trying, because some days we have to lace up our cement shoes and move forward, whether we feel like it or not. I’m grateful to have a team backing me up and oftentimes holding me up, with a safety net of love and support. I hope you too will find your safety net that will give you the fortitude to put on your cement shoes and slog through this journey called chronic illness.

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Thinkstock photo via Zdenka_Simekova.


This month I finally submitted the last of my university work. It was an incredibly challenging process, however, I am extremely proud of myself for making it through. Over the course of my studies I battled my various health issues, one of which was chronic fatigue syndrome. By the end of my degree (particularly the last few months), I was hanging on by a thread. I struggled to come up with a system which worked for me.

A lot of it for me was trial and error, which I am sure is the case for most people. That being said, I have compiled a list of advice I wish someone had given me before I started university:

1. Your health and well-being should come first. It can be tempting to put your health to the back of your mind. Trying to live the student life can be unhealthy – stress, late nights or even all-nighters, skipping meals and the like. But remember you will likely regret it, especially if you get post-exertion malaise syndrome.

2. Speak to your tutors and lecturers. Find out if there is any support available for you. At first I was very hesitant to speak to someone about my struggles. However, my senior tutor was extremely helpful. After explaining my situation I was able to get a much needed extension. Find out if there is any extra support available for people with disabilities or health issues. In my university we have a well-being support team. Once you find out who to contact, it is extremely helpful to keep in regular contact with them, particularly if you are struggling.

3. Organization is vital. Keep a calendar or diary for all your important dates and set reminders. These dates include classes, deadlines, due dates for library books and other various appointments. This can be extremely important when that dreaded brain fog hits. Personally, I prefer to keep a calendar on my phone so that I don’t need to remember to bring an extra thing with me each day. I also keep a cute little travel bag with all my essentials, such as my medication, muscle rub and a heated pack.

4. Start all your work early. This follows on from the previous point. For me, this one was quite difficult. I had the bad habit of calculating how much time it would take me to complete my work based on how long it would take if I kept having good days. I later found that it was vital for me to take into account that I would probably end up spending at least a few days bedridden.

5. Ditch that oversized bag and invest in luggage with wheels. I spent a lot of time in the beginning of my studies causing myself a lot more pain than was necessary as I insisted on bringing my heavy backpack. When my partner first suggested I bring my carry on suitcase, I laughed him off. But honestly, it really does make a difference.

6. Don’t be hard on yourself when you are struggling. It can extremely difficult to not compare yourself to others on your course who may be progressing sooner than you, or who finds things easier than you do. But remember you are not in the same situation as others. You may not be able to do things as quickly or find it as easy as other people.

Out of everything, I think the most important thing is to know your limits and take care of yourself. Your health and well-being are important!

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Researchers found inflammatory markers in blood that corresponded with chronic fatigue syndrome severity.

Read the full version of Researchers Find Evidence Chronic Fatigue Syndrome Is an Inflammatory Disease.

Read the full transcript:

You’re Going to Want to Show This to Everyone Who Says Chronic Fatigue Syndrome Isn’t Real.

A study linked myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to markers of inflammation in the blood.

This often-doubted condition has a real, biological basis and may be diagnosable with a blood test.

After analyzing 51 proteins found in blood (cytokines), two were much different in those with ME/CFS.

Among those with the condition, levels of 17 cytokines varied based on the severity of their symptoms.

Among those with the condition, levels of 17 cytokines varied based on symptom severity.

Of those, 13 were found to be “pro-inflammatory,” suggesting inflammation drives ME/CFS.

This connection may explain many of the symptoms which are often described as “flulike.”

The study also shed light on a possible reason why more women have ME/CFS than men.

Women tend to have more leptin, one of the cytokines associated with disease severity.

Researchers say their findings could lead to a diagnostic blood test as well as pave the way for future treatments.

More research is needed to establish any cause and effect between the inflammatory cytokines and ME/CFS.

“I have seen the horrors of this disease, multiplied by hundreds of patients. It’s been observed and talked about for 35 years now, sometimes with the onus of being described as a psychological condition. But chronic fatigue syndrome is by no means a figment of the imagination. This is real.”

– Dr. Jose Montoya, Lead study author, oversees the Stanford ME/CFS Initiative


The chronically ill: We’re fighters. We’re tough. The amount of strength it takes to get through the day rivals any superhero. Yet, every superhero has their weaknesses. And each hero has an origin story. Just like Clark Kent, one day… I realized I was special.

I am Superman.

Very few understand me (and what I go through).

I know what it’s like to feel alien.

 

To put on my glasses, fix my hair and look normal – and for no one to know my secret.

My illness is invisible and it’s part of my origin story. Sometimes my senses are heightened (sensory overload). I’m chronically weak. I get easily fatigued. And sometimes, I have episodes of paralysis. It feels like kryptonite is draining the strength out of me. Glowing green and keeping me captive.

Just because I experience weakness does not make me weak. Real strength isn’t visible in times of health and abundance. Real strength is what it takes to push on through weakness and refuse to give in.

Sometimes I spend days at a time in bed. No, I’m not saving the whole world. But I’m saving my world. I’m resting for the next battle. And that’s enough. I’ve come to realize that. Because that is what it means to have true strength.

I’ve always loved superheroes. When I was a kid, I watched old Superman cartoons, Batman and even the old Aquaman cartoons. As I got older, the Marvel Universe films started coming out.

But there have been times when I’ve resented superheroes for their physical strength. (Even times when I’ve been jealous of regular humans.) But I’ve grown to realize that superheroes are created by their writers because people need hope. People admire superheroes because many of them, like Superman, embody strength and courage. They teach us to hold on to optimism, to fight like the whole world is on the line and to do it with a sense of purpose.

Every person who fights every day because of a chronic illness is extraordinary. We embody strength and hope even when we feel physically weak. Even when we are weary to our core, we are Superman.

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I’ll never forget visiting with my sister one day after she had gotten a new FitBit. She was bouncing around trying to get all her steps in for the day, while I sat down chatting with her. Even just walking to and from the kitchen can wear me out most days, but she is constantly moving, never standing still.

 

I think it is often hard for a healthy person to understand exactly what chronic fatigue feels like for those dealing with chronic illnesses. So often it seems the healthy have unending reserves of energy. I’ve often felt like I was just a lazy person, as I never remember having the kind of energy that others seemed to possess. It took me years to finally get diagnosed with a chronic illness and find out I actually had quite a few health problems I’d dismissed over the years as simple quirks of my body. Some symptoms were even overlooked because I simply did not realize other people felt differently. Fatigue is definitely high on this list.

I guess I always thought other people felt the same way I did. Which often led to me being greatly confused by some activities, especially sports. It always seemed like such a tremendous waste of energy to be running back and forth like that. I remember attempting to join a basketball team one year. Once, in the middle of a game, I had finally caught up to everyone at one basket, and they were already taking off to the other end of the court. I was so frustrated; it seemed that by the time I would get to one end of the court, they were already racing back to the other end anyway. So I developed my own genius plan, I was just going to wait at our basket. They would be back in a second anyway, so I refused to try to run and keep up with them. It wasn’t until recently that I realized all of those other kids simply enjoyed sports because they had an abundance of energy and it was an outlet to use it. I always thought I couldn’t keep up because I was just out of shape. But no matter how hard I tried, I never could seem to keep up. I’ve never remembered having extra energy to spare.

Even as a little kid, I remember preferring low-key activities like playing with Barbies, reading or watching movies. I never enjoyed running and playing outside. I remember going to visit my best friend and wanting to chill on the couch all day watching movies. She always wanted to go and do something, but I was perfectly happy just to sit on the couch all day.

In college, I was the only person I knew who took naps nearly every single day. One of my friends woke up at 5:30 every morning, studied, went to classes, worked part-time, hung out with friends and even got involved in the theater productions. I, on the other hand, avoided morning classes as much as possible. I usually woke up at 9:00, went to classes, took a nap, did some homework and went to sleep. I was also involved in the theater, but it would end up being the only fun time I scheduled in my day. I rarely hung out with friends and was always tired. I heard that “everyone” was tired in college, but no one seemed to be dragging nearly as much as I was.

I didn’t realize just how bad my fatigue was until recently when I was watching a TV show and just watching the characters standing around talking made me tired. Just thinking about constantly being on the go, or something as simple as standing around at a party is hard for me to even fathom.

So before you judge someone for being chronically fatigued, or even before you judge yourself for struggling to keep up with others, just remember that some simply don’t have the same energy reserves as a healthy person. I think oftentimes it’s hard to understand another person unless you walk a mile in their shoes – or in my case, sit for an hour on their couch.

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Thinkstock photo via AndreyPopov.

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