Since writing my article about depression five days ago, and my mum’s 7-day visit to Ireland, I feel a shift has taken place in my mind.
I am not 100% there yet, but I am well on my way to finding uncompromising resolve again. Many grand and tiny gestures have contributed over the last 4-5 weeks, and are still willing me forward today. Of course, the backing of friends and family, as well as my medical team definitely helped.
Most of all, though, I had once again come to the realisation that I unfortunately need more sleep than the average, healthy person. At this stage so, I must start considering my continuous fights against tiredness and “forgetfulness” about needing a lot of sleep, as a pure character flaw.
Perhaps I should also consider this forgetfulness a deliberate act of personal terrorism because who doesn’t like being busy? Who doesn’t like being able to get up in the morning and continue to work and stay awake for the next 12+ hours without falling asleep after 2 hours?
Allow me, however, to enlighten you what my energy levels are like. I am not the “Let’s do our shopping in the morning, go to the cinema right after that, go for a meal following the film and end our day in the pub.” Sadly, that’s not me, not anymore. With a willing butler, chauffeur and cleaning crew I might reconsider, as well as laced with many Provigil tablets, but there are certain side effects to all those mentioned.
Mornings are my golden hour and not just a photographic moment in time. When I have things to do, I do them right after breakfast when energy levels are somewhat refilled in my tank. As an example, I do my grocery shopping at 9am, and after returning home a couple of hours later, I am ready to just stretch out on the couch or hit the hay again. The rest of my days are spent in a similar manner: housework for a couple of hours, back to having a lie-down. Do some reading or writing: bed. Evenings: likewise. You can call me a Duracell bunny on slow speed, so.
I continued to underestimate the power sleep has on a human body until I literally ran on empty. Again. However, nothing regenerates body, mind and soul more than a good few hours of shut-eye under the duvet, so I’ve since been force-feeding myself rest, relaxation and sleep.
It goes without saying that feeling low isn’t cured in one week just like trying to get rid of MS fatigue cannot be done over one night, or even after one week of sleep. Trying to find a middle ground between wanting the body and mind healed at the same time if you have a chronic illness is a tricky search. Exercise is good for the mind, and helps with MS fatigue, but what if that exhaustion messes up your ability to really get up and well… exercise.
Is it is not a self-defeating way of trying to improve both body and mind? Do I exercise so vigorously trying to improve the mind that I wreck my much-needed sleep patterns, eventually ending up feeling low again?
Or do I use an exercise plan suited to my level MS fatigue, a plan that is not strong enough to avoid improvement of the inner workings of my grey cells?
You see, therein truly lies the vindictiveness of having relapsing/remitting MS. It gives and it takes. It hurts and it soothes at the same time, all day, every day.
I understand why some think people with MS are not being honest about their illness. How can someone grasp the reality, the unpredictability, of it unless you truly live it? How do people like you, so many others and myself live with that unpredictability?
One answer on what relapsing/remitting MS feels like, we let it rage all over and through us, we try to stand tall and we try to think one thing: tomorrow is another day. It’s a privilege to learn from experiences from other people with MS, and from those close to us. We have a voice, and by god do we use that voice as a group of people wanting to be part of each other’s solution.
So as my body still feels battered and bruised, I feel my mind slowly moving forward.
For my mum, family & friends.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.