Living with Multiple Sclerosis: night

The first installment of what my life is like daily living with Multiple Sclerosis (as I mentioned in this post)...

It’s 9:50pm. Both kids are finally in bed. Steve is watching TV on the couch. Even though I’m exhausted, I feel a bit wired. I find that it always happens around this time. I don’t even know how to describe this wired feeling. My body and mind are exhausted yet I just want to sit here for a while, take a moment to wind down, a moment for myself, a moment to forget about how drained I feel. I find the computer to be my one good distraction these days.

My forehead, cheeks and side of my nose start to tingle. My body has been buzzing all day – a constant buzz that never seems to go away. There’s a burning sensation rushing under my skin and over my entire body. My elbows feel sore and brittle. There’s a piercing pain in the flesh between my thumb and index finger. I start to push on the area, almost pinching it, hoping it will go away but instead my palm starts to feel numb and then my whole hand becomes painful and stiff. As I look at the computer screen, my eyes feel like they are jittering, like a very rapid vibration, as they move from side to side. It’s not noticeable, but I can feel it.

The tingling, how do I describe it? Hmm. I guess the best way to describe it would be to think of when your foot starts waking up after it has fallen asleep. You feel tingling, pins and needles and vibrations that go away quite quickly. Now think of it lasting all day, every day.

It’s almost 11:30pm. Where did the time go? I shut down the computer and, using both hands to help push me up, I stand up from the chair, my joints feeling stiff and hot. My hips, knees and ankles crack as I walk out the spare bedroom door. My body feels a lot older than it really is.

I get on my pyjamas and then head to the bathroom to wash my face and brush my teeth. The TV is on and Steve is already in bed sleeping.

It’s time to lie down.

I let out a deep sigh as I sink deeper into the mattress. My body is overcome by a wave of pain. The rush is so intense. My chest tightens and my heart starts to pound making the rest of my body beat with it. The beat becomes irregular or so it feels. I’m sure I’m just imagining it.

I try to sit as still as possible to help my body relax. I take a deep breath and let it go.

My feet, ankles, knees, elbows, hips and hands feel like they’ve grown three times their size. They feel swollen and hot but they aren’t. The pain makes its way to the back of my calves. The muscles feel tight and hot, like they are about to explode.

As I steady my breathing, I start to feel something pushing on the top of my head, like I’m balancing a book. It’s a feeling I have throughout the day, along with the pain, fatigue and tingling, but I’m just remembering it now. The warm tingling sensation creeps down my forehead, cheeks and sides of my nose, down my neck, back and arms. My legs become restless. They want to move and I can’t seem to get them to stop. My left eye suddenly feels pressure and pain starting from the inside corner next to my nose. I leave the tv on as a distraction. I wonder what’s on HGTV? My upper back starts to feel like it has been lit on fire.

Steve wakes up but only for a moment to give me a kiss goodnight. I flinch, not because I don’t want him to touch me but because his hand touching my arm feels like a burning inferno on my skin. My skin feels like it’s melting, like a hole is burning right through to my bones. At that moment I feel sad and sorry. Sad that there’s nothing I can do to change the way my body feels and sorry that he has to deal with all of this too.

I close my eyes.

Please let me fall asleep soon.