The Mean Reds: Bad Days, in a Life after Chronic Fatigue Syndrome

Every now and then, I have a Bad Day.

I don’t mean the kind of day where everything goes wrong and you’d just rather throw your phone in the ocean and eat coconuts by the sea (although I certainly have those days as well.) The Bad Days that I’m talking about here are the days when you wake up and nothing works. You usually make an espresso every morning as soon as you get out of bed, but one Bad Day you get up and it’s an agonising decision that your brain just can’t seem to fathom – will I have a coffee? You’ve been taking the same bus-route for the last six months, but all of a sudden choosing which bus to take is a fifteen-minute process. Any environment in which you hear more than one voice at a time becomes terrain that you can’t negotiate. Despite feeling really happy to be at the gym, the weights you lifted last week wear you down and you fatiguing within a set.

I don’t like to think that these Bad Days are related to Chronic Fatigue Syndrome, but I do know that I never had them before CFS. Although I celebrate the anniversary of my recovery on the 24th of February each year (and it has been three years so far!) every now and then I’ll try to floor the metaphorical accelerator pedal and my brain and body just stall – nothing happens, and the harder I try to push, the less I get out of myself.

I include the clip above from Breakfast at Tiffany’s because, although Holly Golightly is a call-girl talking about anxiety and I am an athlete talking about some kind of intermittent, post-CFS failure-to-launch, it illustrates something about the way that I feel about these days.

Some people told me that you never recover from CFS, that you just learn to live with it. It’s a concept that makes me uncomfortable, but that I sometimes subscribe to, albeit reluctantly. I don’t like to imagine that I’m walking around with this ticking bomb inside me, waiting to explode and splatter my new, beloved life with the shrapnel and gore of Relapse. But I remain “alert but not alarmed” to the possibility. It’s like my own microcosmic War on Terror.

I’ve learned to manage this situation by thinking of my energy as being like money. You can make money, invest money, save money, spend money, spend all your money, and you can spend money that you don’t have. When you deplete your savings, you need to replenish them. When you go into debt, you need to pay that debt back. Sometimes you can flip that debt quickly and get it all paid off interest-free – but you need to pay it back. Live on borrowed funds for too long, and then you have to pay it back with interest. Ignore the debt altogether and sooner or later you’re going to be bankrupt and homeless.

The solution to all of this is learning to recognise when you just can’t afford it. And guess what? That means you sometimes have to so no, both to the wishes of yourself and others. No, I can’t take care of you today. No, I can’t train today. No, I can’t work today. No, I can’t go out this weekend. It sucks, just like it sucks not to be able to afford things financially, but to deny the fact is to drive yourself towards energetic bankruptcy.

CFS is a hard disease to live with, manage, and recover from successfully because most people experience very little in the way of understanding or support. Although it’s being increasingly well-recognised by biomedical researchers, there is still a prevailing attitude amongst most family doctors and certainly in society at large that CFS doesn’t “exist.” Like many other illnesses that aren’t immediately apparent to the naked eye, CFS attracts judgements which result in its sufferers being seen as lazy hypochondriacs who are looking for an excuse to elicit sympathy and to avoid having to perform their duties. This is part of the reason why I don’t speak as much as I could about my experiences with CFS, but it’s also part of the reason why I’m speaking about it now.

A couple of weeks ago, I was speaking with a woman around my age who had suffered from the onset of CFS and who had only recently received her diagnosis. Speaking to her about her experiences in learning to live in what was essentially a completely different body to the one that had served her pre-CFS, and about her frustrations in dealing with the ignorance and prejudice of everyone from doctors to colleagues, made me realise how much I’d learned about managing it, and also how valuable my experiences could be to others.

So, based on my experiences, here are a few of my tips for managing Bad Days.

First, accept that you’ll have them.

They’re real, and – despite what others will tell you – you can’t “snap out of it” or “push through it.” It’s not “all in your mind.” This means that you can’t always do things the way that you did in your pre-CFS life. Sometimes, like it or not, you’re going to have to make detours, implement new strategies or just stop for a while.

Next, take responsibility for your Bad Days.

You didn’t ask for them, and it probably doesn’t seem very fair that you have to deal with them. But now that the burden is yours to bear, you need to do what’s right for yourself no matter what others think or say. Some people will try to get you to “push through it” because “it’s all in your mind” – if you try to please these people, you probably can squeeze some extra effort out of yourself. The other person will feel very pleased with themselves – “See – I told you it was all in your head!” – and you will be left repaying that energy deficit for days, weeks or months, depending on where you’re at in terms of recovery. So accept that you’re going to be judged for some of your decisions to take care of yourself, but that it’s your responsibility to make sure that you are in good health because it’s you who has to live with the consequences – good or bad – of your actions.

Learn to differentiate between bad days and Bad Days.

As Holly Golightly said, there’s a difference between the Blues and the Mean Reds. Everyone has bad days, but not everyone has Bad Days that involve neurological problems, post-exertional malaise, pain, or any of the symptoms that are typical with your CFS. Remember, these are symptoms that you would not have experienced before the onset of CFS. These aren’t your usual too-tired, too-lazy, can’t-be-bothered excuses, and you are ultimately the only authority when it comes to recognising them. It’s the difference between not feeling like going to work and actually not being able to find your way along the same route you’ve been driving every day for a year. It’s the difference between feeling better once you’ve warmed up and being unable to complete a set at last week’s weight.

Read your energetic bank statements.

You can’t become financially wealthy if you don’t pay attention to all of your transactions, and you can’t rebuild your energy reserves if you don’t know what depletes your energy and what increases it. Again, what factors increase or decrease energy can be different for individuals, and can change throughout your life, so you need to become an expert in this field. There are some universal methods of growing your energy reserves, such as getting enough sleep, a balanced diet, and having healthy relationships. Stress, caffeine, sleep-deprivation and allergens are universally depleting. There will be other factors that are unique to you. For example, I personally need time alone to rebuild energy, and find my energy drained by too much time around large groups of people. This may be different for you.

Learn to be a lazy, selfish b*tch and not give a f*ck about it.

What would a “lazy, selfish b*tch” do if she was tired? She’d take a day off and sleep and not give a f*ck. If you’re anything like me and most other CFS sufferers I’ve met, you struggle with this concept. You have trouble taking time off – whether it be from work, study or family duties – because you worry about who will shoulder the load for you. If you do take time off, you feel incredibly guilty and anxious, which only slows down your recovery. You worry about how others will perceive you. You worry about getting behind on whatever goals you have set for yourself. Truly, one of the best things you can learn to do is to reject society’s glorification of the stressed, overworked individual and be unapologetically self-centred for a while.

Remember that you can still do whatever you want to do, you may just need to go about it in a slightly different way.

Never give up on any dream that you might have. There are people who have been sicker than me who are living their dream (like my team-mate, Mike Turner, whose story you can read here), so I refuse to accept that I can’t live mine. If you’ve suffered from something like CFS, remember that recovery is possible but that you’re essentially living with a different body, that has different needs and reactions. Learn about how to give it what it needs, and you can increase its capacity to give you what you want.

Advertisements

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s