Secondary Conditions: Chronic Fatigue Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s myalgic encephalitis (ME), better known as chronic fatigue syndrome, aka CF or CFS.

Like most chronic illnesses, chronic fatigue can be mildly described as a massive pain in the posterior.  It’s exactly what it sounds like – extreme exhaustion that varies from sporadic to constant.  Have you ever had glandular fever, and had that dreadful, bone-aching exhaustion that drives you back to bed, on the verge of tears from sheer tiredness, just two hours after a 16-hour sleep?  I’m told its much like that.  In fact, chronic fatigue can often develop after a bout of glandular fever.  In other words, to describe CF as mere constant tiredness is inaccurate.  It’s crushing.  It doesn’t get better with rest, and it gets worse with lack of rest.  My own bout of glandular fever has given me a healthy fear of chronic fatigue.  I’ve never felt so horrific and disconnected in all in my life, and I only had it for nine months.  CF can be limited in duration, but it can also last for years, or for a lifetime.  Anyone of any age can contract it, even children.

This exhaustion may be the only symptom sufferers endure, but others may experience headaches, dizziness, weakness, nausea, light-headedness, aching muscles, joint pain, sore throats and tender lymph nodes, as well as trouble remembering, concentrating, or forming sentences (brain fog).  Unfortunately, most of these are also symptoms of glandular fever or even influenza, so it is worth speaking to your doctor to rule those two out.  Glandular fever can be confirmed with a simple blood test.  Indeed, excluding other conditions, such as anaemia, is the only way to arrive at a CF diagnosis, as there is no one test to confirm that you have it.

There’s also no known reason as to why people develop it.  Like most of the illnesses I’ve discussed in this series, it appears to affect those of the XX persuasion more than the XYs.  Its onset it sometimes linked to physical stressors, such as infections, imbalanced gut flora, and hormones doing wacky things, as well as just plain stress.  However, we’ve yet to identify a single factor that guarantees you’ll get it, and having any or all of the above doesn’t mean you’re automatically going to.

As you can imagine, the impact of severe chronic fatigue is devastating.  It can totally prevent normal socialising, normal functioning – normal anything.  It leaves people without the strength or energy to do much more than maintain the physical functions, and I’m told even that can be a stretch on bad days.  Even those less severely impacted suffer the impacts on their work and social life, particularly as it can strike at any time of day.  For those whose friends or family suffer it, prepare to extend a lot of patience, sympathy, grace, and practical assistance wherever you can.

So, what’s the good news?  Unfortunately, it isn’t that there’s a cure.  There isn’t.  There’s also no one treatment.  Really, the news isn’t that good.  Treatments are largely changing lifestyle factors – ensuring a healthy diet, planning your day around periods you tend to have more or less energy, pacing yourself carefully, and practising good sleep hygiene, including avoiding caffeine or naps late in the day.  Gentle exercise may help some, but for those who suffer Post-Exertional Malaise (an increase in exhaustion after activity) will probably not benefit.  Symptoms such as headaches etc can be treated with painkillers.

The most important thing, as I understand it, is having support.  Supportive friends, a supportive workplace, but most of all, support from people who get it.  I think that’s true of most chronic illnesses – to have even just one person who knows what it’s like can be a huge relief.

Do you have chronic fatigue?  What was the trigger for you in developing it?  Do you have any coping strategies you can share?  Let me know in the comments.

 

Spoon Theory

Have you heard people say, “I just don’t have the spoons for this?” and wondered what it means?  Well, let me explain.

Spoon Theory is a way of explaining the effort of living with a chronic illness.  Created by Christine Miserandino during a meal in a restaurant, it goes like this:

Imagine that you start a day with a bunch of spoons.  These represent your total energy for the day.  Now, if you are a healthy person, that bunch is probably quite large.  If you have a chronic illness, it’s not going to be as big.

Now, take yourself through your day.  If you are healthy, getting up, getting dressed and getting to work might just take one spoon away from you.  Let’s say you started with 24.  Now you have 23.  If you have a chronic illness, each of these tasks might take one or two spoons.  Let’s say four total, because getting ready requires a number of smaller tasks.  If you started with just 12, now you’re down to 8, and you haven’t even started work yet.

Now let’s go through what would be a typical day for me.  Let’s say I’m at the court in the morning giving duty advice.  I have a three hour shift there.  That shift by itself costs me one spoon.  Add in an exceptionally difficult customer and that’s another spoon gone.  Let’s say it’s a particularly mad week and I’ve got to go into court for someone – another spoon.

So if that three-hour shift took 2 or 3 spoons, I’m down to just 5 or 6 left for the rest of the day.

I have my lunch break.  A healthy person might gain a spoon from some food and a break.  I don’t.  I need it just to maintain my spoons at their current level.

In the afternoon I see a client (another spoon), do some follow-up work from the morning (another spoon), deal with the inevitable crisis, because there is always one (another spoon), and review my files (another spoon).  That’s four spoons.  I’ve just got one or two left, and I still need to get home, eat, shower, feed the cat and go to bed.  If my husband is away, I’ve also got to walk the dog and cook myself dinner (he is my wonderful chef most nights).  As you can see, there aren’t enough spoons in the drawer for that.  That’s how I can end a day without having done much at all and still be totally and utterly wiped out.  I certainly can’t do what other people can do after work – go to a class or the gym, or spend time with friends.  If I do that I won’t have enough spoons left to do what needs to be done.

Now, some days I might have more spoons than others, and sometimes I’ll gain a spoon during the day if my pain suddenly vanishes or my meds kick in and give me a burst of energy.  On the other hand, if I forget my vitamins or suffer a flare-up, or even just have a cold, I’ll have even fewer spoons.  Right now I have the flu, a sinus infection and gastro (thank you, depressed immune system), so my spoon count is pretty low.

Some spoon-raising factors include good self care, such as getting a good night’s sleep, eating three good meals, staying hydrated, sitting in the sun for a few minutes and just enjoying life, taking all my vitamins, and waking up pain free.

Spoon-reducing factors include flare-ups, sickness, waking up in pain even if it later goes away, failure to look after myself, a late night or early morning, a bad dream, difficult people or conversations, and stress.  The longer a flare-up goes on, the fewer spoons I will have each day as exhaustion, prolonged pain and depression eat away at them.

One consequence of this is that chronically ill people have to be super aware of our spoons.  I am not always very good at this and frequently overestimate my own abilities, leaving me without the physical resources to be useful in the latter part of the day.  Generally speaking, though, I am aware that I live life in a series of trade-offs – if I do X, I can’t do Y.

Up until this little flue debacle, things were going relatively well – last week I had sufficient spoons to do something after work every night of the week, whether it be walking the dog, writing a blog post or driving thirty minutes to see my parents.  Sure, some nights I was cutting it extremely close to the wire and had to massively overcompensate with caffeine on Friday which led to terrible pain on Saturday (see?  Trade-offs) but overall I was pretty well supplied with spoons compared to how I had been just two weeks earlier.  This week, not so much.

Have you heard of spoon theory before?  Do you ever use it when explaining your illness to others, or do you have other methods you prefer?  Share in the comments below.