Invisible Illness: Your life versus my life

On the surface, your life and mine might not seem that different. We get up, we work, we have lunch. Let me compare an average morning. But this time, I will describe what is really going on. Not just the things you see. I will let you have a look at what goes on beneath the tip of the iceberg and unveil my invisible life. 

YOUR DAY MY DAY
You get up and might need a while to wake up. You have a shower and eat breakfast. If you have children, the moments before you leave the house might be stressful. When I wake up, I am as tired as before I went to bed. From the moment I get up all I think about is going to bed again. I am like a drug addict, yearning for the next shot. I am addicted to sleep. But I have to get out of bed. I am often dizzy, I sometimes even fall. I have a shower (which is necessary because of my night sweats). My family always forgets to leave my towel untouched. Using the same towel as they do might be harmful for me (fungi and bacteria). I must decide whether I take the risk or whether I walk to the place where we keep fresh towels and risk to catch a cold on my way. It’s all about risks. Even breakfast. I am so tired; however, I need to get into gear because of my children. I am tempted to have an energy drink for breakfast, although I know it’s bad for my health. I eat my “cancer diet”, cream cheese with linseed oil. I loathe it. I would like to stay in my nighties. Yet, I force myself to dress and I even apply make-up. There was a time after my diagnosis when I didn’t bother to do so. Now I am convinced that taking care of my looks is beneficial – for my body and for my soul.
You go to work. You interact with your colleagues. You make appointments and look forward to some leisure time activities. You work. I bring my children to school and preschool. I try to concentrate on all their worries and help them check their schoolbags, although I feel like I am going to faint most of the time. Normally, we walk. But if it is rainy or when we are running late, we take the car. (unless I am too weak to drive). At school, I meet some other mothers and fathers. We chat a little. I try to keep it short, because I know I need to save my energy. I am a spoonie, after all. Chatting, talking, standing there…it costs so much energy. I would love to have a coffee with my friends, but I invent and excuse and walk away. I still haven’t learnt to say: “I am chronically ill. Having fun is so exhausting for me. I just can’t do it.” They wouldn’t understand me. The mothers ask me whether I will join them for a “ladies only” spa and party weekend. Spa rings an alarm bell: fungi, bacteria, cold. Party is difficult as well: lack of sleep, irregular hours. Again, I invent an excuse. I feel so bad about it;  like a liar. I should shop for some food, but I decide against it. It would be too tiresome. I need to go home and work, before I collapse. If necessary, I call my clients once I have reached my home office. Otherwise, I just sit in front of my computer until noon. I am a scientific ghost writer. It makes me proud that I am still able to earn my own money. I am glad I can make use of my education. I write about a whole range of issues and I have to do a lot of research. I write page after page, until I can’t write anymore. My discipline and my willpower are finally failing me: I am too tired to cook lunch. I quickly eat some pre-prepared fresh cheese and linseed, hating it. I cannot think about anything else than my bed now. Automatically, I check whether my eyes, my throat or my head hurt. I measure my temperature, knowing that my compromised immune system has its regular ups and downs. Am I going to be sick again? No, that can’t be! I have to finish my ghost writing project this week! If I choose to meet a friend in the morning, I need to go to bed as soon as I come home knowing that I will have to make up for everything I didn’t do – from research to writing, from shopping to laundry – the next day. I am going to work double and end up  even more worn out. Postponing doesn’t help. It won’t be any better tomorrow, I know. It will only get worse.
You have lunch. Afterwards, you go back to your work. I go to bed. I need to take a long nap, otherwise I cannot take care of my children later. When I wake up, I check how much energy I have left for the afternoon. Will I be able drive? I wonder whether I have to go shopping today. I could do it tomorrow. The post office as well. All those duties…it is simply too exhausting for me. I will only concentrate on my children. I drink three to four cans of coca cola in the afternoon – it’s my self medication. When the kids are in bed, I work again until I fall asleep in front of my computer. I have literally slept on my laptop.

Will tomorrow be any better? No, but I have to go on.

Having read these lines, I hope it will be easier for you to understand what being a spoonie and having an invisible illness is like. There is nothing to be seen for you. On the surface. Please, look beneath it.

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5 Comments

  • Tamara

    Liebe Teresita!
    Ich kenne das auch, nach meiner schweren Hirnoperation war ich monatelang unfähig, einen ganzen Tag zu bestehen. Pausenlos müde und erschöpft. Auch nach 2 Jahren konnte ich nicht ein Meeting am Vormittag, eins am Nachmittag und Abends einen Termin haben. Wie eine Grossmutter musste ich meine Kräfte verwalten. Die Ärzte sagten klar, dass sich das nicht mehr bessern wird, im Gegenteil. Aber ich WOLLTE, dass es besser wird, und ich habe es geschafft. Zurzeit studiere ich sogar! Vor 5 Jahren hatte ich noch Mühe, mehr als eine Stunde zu sprechen! Mein Glaube hat mir geholfen, ich kann es nicht anders ausdrucken. Ich wünsche Dir viel Kraft. Tamara

    16 May, 2017 at 10:28 am Reply
    • Sick Chic

      Liebe Tamara,
      Es gibt immer ein Auf und Ab. Wann und wo es kommt, weiß ich nicht. Seit Anfang des Jahres ist es punkto Fatigue bei mir radikal bergab gegangen. Andererseits konnte ich den Jakobsweg gehen, obwohl ich kurz davor noch bei einer Stadtbesichtigung zusammengebrochen bin. Das Unkalkulierbare macht meinen Alltag schwierig – im Endeffekt konzentriere ich mich auf meine Kinder und lasse die anderen Dinge laufen. Ich schicke Dir eine energiegeladene Umarmung, Teresita.

      16 May, 2017 at 11:27 am Reply
    • Sick Chic

      Tamara tells us about the way she felt after her brain surgery five years ago. She could not even talk for more than one hour.Today, she has taken up her studies again and has improved although the doctors would not have thought she could. Tamara says that her faith has helped her. (in German)
      I answered that there are always ups & downs, that my fatigue has worsened in the last months. I walked the “Camino de Santiago” but fainted during a City trip. It is hard for me to plan my daily life. (in German)

      16 May, 2017 at 11:31 am Reply
  • Mike

    Again you could be describing my life.
    Sleep if I can, I try to stay offline & in bed (so my wife doesn’t worry).
    Then up with my wife, get the kids to school. Once or twice a week I try to walk to the shops afterwards, for exercise & necessity. I had been given the OK to get my licence a few months back but don’t feel up to sitting a driving test.
    Home to nap, if I’m lucky I have energy to do some housework before or after the nap.
    Then add more caffeine & go collect my youngest.
    People say it must be nice to sit at home & watch TV all day!?!?! I hope they never have to know what my day is really like.

    23 May, 2017 at 9:33 pm Reply
    • Sick Chic

      People who say it must be nice to live such a reduced life (sorry, but that`s what it is)… they have to realize it might be nice if you have a choice. But we have no choice. And although a relaxing day at home is a blessing once in a while, it is a curse when you have to live like that every day.

      26 May, 2017 at 7:32 am Reply

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