I’m not “better” I’m simply managing better

I’ve had a recent spell of good health in the past few weeks. I’ve attributed it to being able to cycle into work so I have a regular, gentle amount of exercise each day.

As superb as that is, all that’s meant is that my pain has been partially replaced with unending fatigue, which I am working hard to manage and balance out.

However there’s no escaping that my recent success has led to some around me wondering and even declaring that I must be feeling better, or even that my chronic illness is cured.

Wouldn’t that be nice? Truthfully though managing a chronic illness is a lot of a hard work and so is keeping your symptoms at bay so you can enjoy a little pain-free time once in a while.

It’s really hard to explain to others that any respite from my pain or fatigue is usually temporary. If I’m making my hard work to manage my illness look easy that’s not happening because that I am better, but because I am managing it better.

Working hard to make things look easy

One of the first lessons you learn when diagnosed with a chronic illness is that there’s no escaping illness completely. The best job that you can do is to keep pain and fatigue at bay, pace your activities and try not to overdo things. It makes those of us that are ill a little risk adverse as we battle with our bodies. When we find a sweet spot where we experience normality we’re inclined to cling onto that feeling for as long as possible. Denying ourselves the chance to find out how much our bodies can really manage.

So I find myself in an odd place this month where I have reached the goal of riding my bike through pain to manage my pain and reap all the benefits of cycling to work. To do this takes an awful lot of preparation and work on my part. The symbol of me cycling to work strikes a chord in those around me, it’s a sign of progress – it shows that I am improving.

In many ways I am, but there’s no getting away from the fact that to accomplish this task I took a series of massive risks to train my body to get used to cycling. I cycled in all weathers to see how the extra energy and cold would effect my pain. I cycled while in pain or when pain was arriving to make sure I could get home. I weaned myself off strong painkillers so I could even hit the roads in the first place, mind unmuddled by opiates.

What part of that process is simple? It seems like a huge impulsive leap to many, but it’s taken several months of toil on my part. Even the days where I feel okay are a direct cause of my efforts to keep the pain away, through activity or exercise.

Pain and fatigue are always fighting for my attention

Even if I somehow manage to kick away one symptom for a bit it’s almost always just replaced with another. Right now fatigue is winning.

There’s rarely a day that goes by where I don’t feel out of sorts due to exhaustion, a weary, heavy sensation of never really feeling very rested. If I’m lucky sometimes it starts off as regular tiredness and stacks up over the week like a heavy blanket smothering me in the never-ending mire of never rest. Better that than the wall of fatigue that pins me to the sofa or bed with no warning. I can work with the former, but not the latter.

This feeling of perpetual tiredness robs me of normal days. I wake up feeling like I never went to bed. It’s a soul destroying level of tired.

Feeling tired all the time is naturally very trying, but the thing I hate it most is what a dull layer it puts onto my life. Like everything is hard work, dour or boring. Truthfully, most days it is very hard to stay motivated and disciplined to do the things you really want to do, but somehow most days from some pocket of light in my soul I find a way.

No one but me and my partner sees these moments of my day, so I can easily understand how some around me think I’ve got this illness thing mastered, truthfully I haven’t, I’ve just found a series of ways to muddle through.

Surviving setbacks

I thought I did an okay job of explaining how endometriosis impacts every aspect of my life to those around me. My friends and colleagues had watched me struggle, and we enjoyed the days where I felt great together. Their reaction to when things didn’t quite go my way was surprising.

So when the pain inevitably came back after one glorious pain-free week those around me were sad and disappointed.

I couldn’t understand why, such is theway that your logic is changed by illness. I’ve just experienced one whole week pain free. That’s incredible! It’s amazing progress for me. Here’s the thing – when someone’s ill for the majority of their waking (and unwaking) hours any period of time that’s pain free is a delicacy. A bonus. A beautiful gift.

Rather than being sad for my pain returning (which everyone except me seemed to expect to never happen again) I was just overjoyed for the respite. I wanted to celebrate the success of my months of effort rewarded by the longest moment in time I’d not felt pain. Instead everyone defaulted to good old-fashioned pity.

It was a reminder to those around me of one of the golden rules of incurable illness. There is no magic cure. No elixir or treatment that will magically put things back to how things were before, only containment of your pain and fatigue using baby steps of work and effort so that you can experience as much normality as you can scape away and save.

Hoping we all get a pain-free moment to enjoy again real soon.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

6 responses to “I’m not “better” I’m simply managing better

  1. I can totally relate to the fatigue. It hits me too – ugh. I’ve been taking Vitamin D as I know this tends to be a factor in my energy levels. Love that you view the positive – gratitude for pain free days 🙂

  2. Roz

    Brilliant post. This sums up how I feel every time I tell someone I’ve been feeling worse after a good spell- they seem dissapointed and almost confused on occasions. I try to explain to them they’re not the only ones who don’t fully understand- my pain and fatigue never follows a set pattern often leaves me baffled!

    I try to be grateful for my good days and think of those when I’m feeling my worst.

    Great blog, keep up the good work Michelle! 🙂

    • Thanks Roz, I too appreciate the good days in a way that I never used to. And as you say it’s the lack of a set pattern to illness that frustrates me the most. I have over the years gotten better at finding more satisfactory ways to work around the illness and still try to plan what I’d like to accomplish in a day despite knowing that it could well strike me at any time. I am taking the element of “luck” out of living with chronic pain though, slowly but surely getting better at it. I hope to write about my day-to-day schedule in more detail soon so keep your eyes peeled!

  3. FinallyDiagnosed

    I haven’t been through all of your site, but what I have seen so far has helped me immensely. I love how well you describe your experiences & suggestions for explaining to others. I just wish people would stop asking me, “are you sure you’re not just pregnant?” – after they hear a little bit about some of the symptoms I have just shared. I always feel like saying something snarky in response, but I try to just think of your very well-worded posts, and then explain more about endo so that they may have a better understanding!

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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