Dear friend,

We have known each other for a long time and you know that I live with this disease. You know many of the symptoms I suffer from, but there is something that is hard for me to explain. I am tired. Yes, it sounds odd. In the 21^st century, we are all tired all the time. However, it is different. It is difficult to explain perhaps because I have not spoken about it until now. You are tired, I am tired — it sounds the same. But what we feel is completely different. My fatigue does not go away. It impacts everything. Whatever I do, how I think and what I feel. When I sleep or just rest it does not follow that I will be more awake and rested. What I do know for certain is that energy is a rare commodity. So rare, that I must use it wisely and sparingly.

It’s not in my control, rather it is part of the disease. Sometimes it is the side effect of medications or pain. Sometimes it’s because I did not sleep enough, eat enough, or drink enough. But usually, it just is – without reason. It is hard for me to talk about it, because I have the feeling – not because of you – that it is not a legitimate complaint. So instead of stating that I am tired I come up with other excuses such as, ‘I don’t feel well’ or ‘my legs hurt’ because I thought that it would be easier for others to understand. I did not want to hide my condition but it is just too difficult to explain.

You cannot imagine how I see things or analyze how to go about doing things I must do. Those who don’t suffer from this fatigue take things for granted, but I must expend energy for every move or activity. To prepare food means planning in advance how to get off the sofa, go to the kitchen, open the fridge, take out the dishes, take out the food, cut it up and cook it, all with the least amount of effort. Warming food up aggravates the fatigue. You probably don’t pay much attention, but these activities are done standing up. For me, that is an extra effort. I only hope that all will go smoothly, that I won’t forget anything in the fridge which would necessitate going back, that everything should go as I planned, that I won’t have to stand for too long a period of time, that the packaging would be easy to open – (during those moments I feel that those who design difficult to open packaging should be indicted). By then I don’t even think about cleaning the counter or doing the dishes, but I must return to the fridge all that requires refrigeration. Then I sit down to eat, but the challenge does not stop there. You may not be aware, but eating requires energy as well, as does raising the food, cutting it and chewing. And that is just the beginning. Now it is time for ingestion and digestion. In my body, all is felt. At times I can see in my mind’s eye how my energy clock is winding down. I finish the meal with my last bit of energy. It does happen that my strength is gone before I am satisfied. After that, it’s to bed or the sofa. I must forgo clearing up. I am done.  I know that everyone is tired after a meal. I know that during the time of day is for relaxation and distressing, but for me, it is like I have just completed a marathon. However, in my humble home, there is no podium and there are no medals. I just don’t want to be thought of as lazy or an egotist. The fatigue defeats me.

This is why I don’t want to entertain in my home or leave my house. It requires too much energy. But I don’t want to be alone. I am still me, just tired. Our planning must be considerate of my disease and be more flexible. I may need to sit, to rest, to lie down. We will not be able to go on long walks, I can’t join those. But I can ride, I can sit, I can partake in meals, and you can then tell me about your hikes. These trips that we take are mostly so we could all be together and I don’t want to miss them. I don’t have a problem giving up a photo-op on top of a mountain or dipping in the brook. But I want to be with you, sit, share and talk with you. That is most important.

Of course, it is still difficult for me to understand. You know, I don’t really understand what is happening to me, but it is happening. Don’t worry about asking me too often how I feel. I will tell you when I am tired, and you will offer me to sit or lie down. Then we can keep going. Now that you recognize and know the fatigue I feel you certainly will be able to see how it impacts my life.

I hope you will understand.

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