Off to get some air then. Air, sunlight and a glimpse of the sky. We take it for granted that we are able to get out and about every day. It is good for you. Prisoners, even in the most guarded prisons in Norway are allowed to get fresh air at least once a day. We find it cruel when we hear stories about elderly in nursing homes where the staff doesn’t have time to take them outside. (It really is, too) The boy does not go out much, and there are several reasons why.
After waking up in the morning there are a few things I need to do to get ready, I do them without even thinking about it. I get clean clothes to wear and bring them to the bathroom. I take a shower, maybe a little bit of lotion, get dressed, and do my hair, – I might even put some make-up on. (At least it makes me feel that I look a bit better) I eat my breakfast and brush my teeth. Then I walk the dog and get my first breath of fresh air of the day. This is so basic that I don’t even pay attention to what I am doing. Do you?
The boy occasionally gets some fresh air as well. Sometimes a week passes between each time he goes out – sometimes 2 or 3 weeks. Sometimes he manages to get out twice in the same week! Yeah! Before he goes out he has to go through the same ritual as I do. It just takes so much more time – all day actually.
His morning ritual is the same every day. First into the bathroom. This is more than enough this first hour. If he wants to go back to bed or into the living room, he communicates by shaking or nodding his head when I look at him and ask «living room? » If he wants to go back to his room, I make his bed, get a fresh bottle of water, check that his fan is on, put his computer on the bed, and turn off the lights when I leave the room. If he feels he is well enough to sit up in the living room, I carry the same items to the table next to the recliner. This is where his blanket is as well. Sometimes he asks me to shut the window blinds, because the light hurts him. Then we sit there together for a long time. Just being together.
This is when I, after a while, understand that he has a plan! In the hours to come he starts doing small tasks that tell me that he prepares to leave the house.
«Mom, I’m getting a shower», is the first sign.
«Mom, could you get clothes? »- which he then puts on, one piece of clothing at a time (you need more than t-shirt and boxers to go out), he does his hair (being just as occupied with his looks as other kids his age, despite being sick) – all those little things. We talk very little as he prepares. I «know», and I «see», when I am needed. Several hours later, a decision is made. Either all the preparations have destroyed the day, or he asks
«Mom, could you drive me? »
Of course I can!
Whoever see him leaving the house, walking to the car, sitting next to me in our small beetle, might think: «Wonderful, he is a little better now! He is going out!»
Yes, it is wonderful. Thank you for noticing and for being happy for him. Just how wonderful it is, is hard to understand. Nobody knows how “well prepared” he is. Nobody can tell, as he crosses the parking lot, as he sits in the seat next to me, that he has climbed a mountain this day. To be able to spend some time with those he wants to spend his time with – his friends.
A very poignant and touching description of how ordinary things are so difficult for those of us with ME/CFS. My two sons and I are not as severely affected as your son, but we certainly have days like that. I have found that just getting outside for 10 minutes can make such a big difference in how I feel – the fresh air, sunshine, and being near nature (even if it’s lying on my back deck!) make me feel so good…and yet, whole weeks can go by when I don’t have the energy to try.
By the way, you’re a wonderful writer.
Live with CFS
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Thank you very much for reading and commenting, Sue. Even 10 minutes are better than nothing. Just have to wait for winter to pass to go out on the deck 🙂
Thank you Sue, for your kind words. It’s the little moments that becomes great memories ❤