Explaining Unpredictable Fatigue: "I'm Fine, for Now"
This is a follow-up to an article that I had written a while ago, Definition of, "I’m Fine." Really, I feel like my go-to answer when I’m asked, “How are you feeling?” is always I’m fine. However, that’s not always just me saying it when it’s not true. So, let me explain what I mean.
No telling how I'll feel from one moment to the next
When I’m actually feeling good (well, as good as I can be), I feel like I need to answer, “I’m fine, for now.” Because there is no telling how I will feel in an hour, tomorrow, in a week. How I’m feeling changes more than the Texas weather - and that’s A LOT. However, even though I’m feeling ‘good’ at that point in time, I never fully relax because I know from experience that things can change very quickly. It could be a slight change or a major change; there is no telling.
I try, like I know SO many others with MS do as well, to take care of myself. I try to do what’s best for me and listen to my body. But here is the thing...it’s out of my control, literally. I could have the same routine, not changing a thing, and I will still have issues at times 30 minutes later.
Why am I bringing this up? What’s the point??
I don’t live my life in fear of what’s to come, because that’s no way to live. However, I would be lying if I said it’s not always in the back of my mind of what could happen. It’s that small, itsy-bitsy chance, that my body just wants to slap me in the face with an increase of a certain symptom.
Here is an example, just to try and make it a bit more relatable. It’s the weekend, I’m relaxing with friends. I’m not overexerting myself. I’m sitting in a chair just enjoying the day. I’m conversing, laughing, having a blast. I prepared for this. I rested well; I didn’t do anything that could remotely exhaust me.
Mid-conversation I start forgetting what I’m saying, or I can’t get a certain word out that I’m trying to say. I become absolutely exhausted and start yawning repeatedly. From the looks of it, it seems that I’m sleep-deprived. No, that’s not it - that is my multiple sclerosis wanting to join in on the fun.
Multiple sclerosis is my ultimate party pooper
Do you know how embarrassed I have felt when I’m taking part in a very meaningful conversation and all of a sudden, I start yawning in the person’s face? It makes me feel like crap because I don’t want them to think that they are boring me to death with the conversation we’re having.
PSA: If I have yawned in your face mid-convo, that’s just my MS saying, “HEYYYY, I’M HERE!”
It likes to just show up un-invited. No invitation was sent to my MS. I didn’t ask for it to RSVP “yes” that day. I only RSVP’d for myself, not a plus one. For those people that this happens around who aren’t acquainted with my side-kick MS, they could take it the wrong way. Luckily, my ‘framily’ understands it completely (framily= friends that I consider family).
Fine one minute, fatigued the next
This entire scenario took my husband a bit to fully understand that I wasn’t trying to imply that what we were talking about was boring me to death. Although, at times that is the case because I can only listen to so much about go-karts or whatever else he is working on during that time.
I feel like at times it might appear that I have a sleep disorder because one minute I’m perfectly ‘fine’ and I’m full of energy - then it’s like I just crash, without warning. Like there is a leak on my energy tank; that’s a good analogy. Only, this isn’t something that can be fixed at a repair shop. MS causes my body to be that annoying road that has always and will forever be under construction.
Friends and family: please be understanding
So, if this has happened to you, please know that you are NOT alone. I’ve learned to try and explain to those who don’t have MS what’s going on and that I have no control of what my side-kick MS does. To those people who have a friend or loved one with MS, please just try to understand that we’re fighting a war we didn’t want to fight in, but fighting is our only option. We just want to be treated ‘normally’ when these things happen, instead of making a big deal out of things that might happen. Because sadly, we’re used to it happening, more than you know, and we just suffer in silence on a regular basis.
Were you misdiagnosed with something else before receiving a MS diagnosis?