My mornings have changed so much.
My internal alarm clock is ringing again. I take a quick look at the clock but I know that it is about 7 o’clock. It is the same every morning. I lie there for a few minutes deciding whether to get up or not to get up. Then I recall the advice I read somewhere online shortly after my diagnosis, way back in 2007, “don’t ever stay in bed feeling sorry for yourself, that’s the beginning of the end, the slippery slope, get out of bed and sit in a chair if that’s all your body will allow you to do but don’t stay in bed.”
The first thing I do every morning is evaluating how bad my fatigue is and if there is any pain (or if the pain is better today) before I drag myself downstairs to the bathroom to do my morning routine.
This is such a repetitive chore that I wonder what I used to do in the old days when life was easy and I didn’t constantly think about my body and my energy. One thing is clear though, I never EVER felt guilty for staying in bed a bit (or a lot) longer, it never felt like I was giving in to this godforsaken disease. That was the first step to losing my daily battle.
Before MS I stayed in bed because I probably was out until the early morning, or I had a tough softball game or was raiding or streaming until 5 am. All of this has changed. None of these reasons have been the cause and they are just distant memories.
I have to get out of bed every morning to prove that I can.
In the past, it has never really been an option for me to stay in bed and I am really grateful that I have never felt so bad that I would even consider it. However, recently, my situation has worsened and I hope it’s because of new active lesions on my spine. I do hope, like many MS patients that these symptoms are temporary and that they will go away. Much like many other MS patients, however, I know that with each of these episodes I do lose a little bit of myself that I will never get back.
Of course, fatigue is only one part of MS and there are many other aspects that keep us on a tight rein. I have often gotten up and taken my meds, and gone back and relaxed in bed for an extra hour. But an hour is the limit of my tolerance for slacking. It also means, if I really want to do that that I have to plan ahead. Get up earlier so I can start work when I want to and need to.
Lack of energy, fatigue, is a huge problem for a lot of MS patients. Our inability to do a fraction of what we could do before is a mental issue that has to be reconciled with where we are now. For me, there is an associated modicum of guilt when I am sitting down reading a book or watching TV, and everyone else in the house is beavering away furiously. It is not that I don’t want to help or I won’t help – it’s simply that I can’t.
I also really wonder: What was it like to get up and just be full of energy and what was it like to go through your day, not having to count your spoons?