I want you to imagine a time in your life when you were most exhausted. Maybe you had just started a new job, or were getting over a virus, or perhaps you had little ones waking you up at all hours of the night. We all know what it’s like to be tired, to feel like you can’t go on any more without stopping and resting. At the same time you’re probably picturing what it was like to have your first good nights sleep after that exhaustion, what a relief it was for that period to be over. But what if sleep didn’t help? How would you cope if you went on being that exhausted each and every day, regardless of how many hours you slept? Would you be able to stay positive as the weeks turn into months and the months turn into years?
And that in a nutshell is what it’s like to have Chronic Fatigue Syndrome. Although in reality it can be much more complicated than that.
It’s one of those illness that affects different people in different ways. But for me the biggest problem is the mental fatigue. My brain feels like it is constantly filled with fog, that makes it really hard to focus on whatever I’m doing. I have to use any remaining energy I have to force my brain to concentrate, it means everything I do takes a bit more time than it used to. It sometimes feels like my brain isn’t my own any more, it’s so much harder to manoeuvre these days. The skills and information I need are still in there but it’s a challenge to locate them through the fog. My poor tired brain becomes over sensitive to any kind of noise. It’s as though, in the effort to concentrate, it is trying to absorb all the sensory information at once. All it takes is a noise at the other side of the office and my brain is distracted, my concentration is broken and I’ve forgotten whatever it is I was about to do.
My short term memory has become amusingly bad, and sometimes you just have to laugh about it. I have become that person who walks into a room and has already forgotten what she came here for. I used to be able to hold so much information in my short term memory, reams of revision notes and formulas.But now three items on a shopping list are probably beyond me. My brain also has difficulty finding the right words to say. I will get to the end of sentences and realise I have used completely the wrong word or a different tense and by then it’s too late. Somewhere between my brain and my mouth the words get confused and it gets worse the further through the day we get. I am grateful that people tend to just humour me and interpret my illogical sentences.
Whilst my biggest frustrations may be with the mental impact of the fatigue, there are also physical affects. My body is weaker than it used to be, my muscles in particular are more feeble. I can’t stand up for too long before my legs protest. My body aches and feels heavy and weighed down. Walking any distance is harder than it used to be and can cause an increase in fatigue, either immediately or as a delayed reaction. I get frequent sore throats for weeks on end seemingly without a cause.
And these are all on a typical day. Too much stress or a period of over doing it and the bad days come. The fog makes me dizzy and my head feels like it’s vibrating in my skull. I get shaky and faint. My concentrations evaporates and my sluggish brain grinds to a halt. If I keep going and ignore the warning signs, which lets face it I tend to do, then sooner or later my body will force me to stop and regroup.
The problem is life has to go on. I’m too stubborn to give up, take to my bed and permanently hide from the world, as tempting as it may be. Almost all my energy is going into being the best at my job that I possibly can. But even after that I still have to find the energy to cook, look after myself, keep the flat in a reasonable state and drag myself to church on a Sunday. You do what you have to do, whether you feel like you have the energy to or not.
I am generally fearful about taking time off work to recover, not because they won’t understand, although that’s a concern. But more I’m afraid that when I stop for any length of time, it becomes so much harder to pick up where I’ve left off. I start to loose the capacity to do what I have been doing.
It would all be fine if resting made any considerable difference. Unfortunately, the problem is not just that I don’t have much energy, but my body has forgotten how to store it. I can spend two days in bed and wake up feeling almost as bad as before it started. I feel like a bucket with holes in the bottom, as fast as I fill it up, it drains away. So whilst rest is an inevitable part of managing Chronic Fatigue, it seems to do not much more than take the edge off.
I have been told how positively I manage it, that I keep a smile on my face. I am not sure how accurate that is. I often feel like I’m doing a pretty poor job of coping, and worry that I don’t successfully hide my increased irritability and heightened emotions. I try not to let many people see the bad days. The days where the smile I am wearing is costing me a great deal, but I try and keep it on my face anyway. Deep down I get scared, scared of how this could affect my future, scared of how bad it could get or how many doors this illness may close to me. I don’t feel in control of my health and as a perfectionist who would like to control everything, that is terrifying.
I’m not writing this because I want your pity or sympathy. I try not to spend too much time feeling sorry for myself. We all have our own battlegrounds and circumstances we must struggle through. I am writing to help you understand why I am not always myself these days. To offer some explanation for why I am so poor at staying in touch with so many of you. And I am writing to ask if you would keep bearing with me, and keep extending the grace that so many of you have already shown me in copious amounts.
I want you to know that I’m learning about my illness too, as I go along. I am no expert but I need to become one to get through this. I will make mistakes and some of them may affect you. I will cancel plans and fail to communicate for months on end. Maybe you’ll feel hurt in the process and doubt our friendship. But unanswered messages doesn’t mean I’m not thinking of you, forgotten birthdays doesn’t mean I don’t love you. I will keep trying again each day.
It’s going to be okay. It may feel bleak at times, but there are some truths you have to hold onto in spite of the struggles you face. My God is in control and He knows what He’s doing, even if He hasn’t let me in on the plan. These are not the first storms we’ve faced together and I know they won’t be the last. God’s goodness and His love for me are not dependent on my circumstances. He is faithful and trustworthy simply because of who He is.
I will keep on stubbornly persevering and showing up for each new day. I will keep dreaming of brighter tomorrows. And I will keep holding onto hope and trusting through the good days and the bad. I am blessed to have so many people walking with me, along with a God who is always at my side. Taking one step at a time, and each day as it comes, we can do this.