I was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2005, at the age of 28. Since then, I have experienced what it’s like to be paralyzed from the waist down and blind in my right eye and to have cognitive loss not unlike early onset Alzheimer’s. I have also had a cervical fusion and, most recently, a relapse where I was paralyzed on the entire right side of my body.
My MS relapses have all had different short- and long-term effects on my life. I have been fortunate to experience remission after each relapse, however, there are lingering permanent side effects that I live with every day. My most recent relapse left me with recurrent numbness and tingling on my right side, along with some cognitive issues.
This is what the average day looks like for me when I’m experiencing an MS relapse.
I’m lying in bed, restless and caught between wakefulness and dreams. I haven’t slept all night for more than 20 or 30 minutes at a time. My neck is stiff and sore. They say MS doesn’t have pain. Tell that to my inflamed spinal lesion, pressing against the titanium plate in my neck. Every time I think the MS flare ups are behind me, boom, there they are again. This one is really starting to take hold.
I have to pee. I’ve had to for a while. If only AAA could send a tow truck to pull me out of bed, then maybe I could take care of that.
The sound of the alarm startles my sleeping wife. I am on my back because that is the only place I can find momentary comfort. My skin is unbearably itchy. I know it is the nerve endings misfiring, but I can’t stop scratching. I still have to pee, but haven’t been able to get up yet. My wife gets up, comes over to my side of the bed, and lifts my numb, heavy right leg off of the bed and onto the floor. I can’t move or feel my right arm, so I have to look at her as she tries to pull me up to a sitting position, from where I can swing my normally functioning left side around. It’s a hardship to lose that sensation of touch. I wonder if I will ever know that feeling again?
My wife pulls the remainder of me up to my feet from the sitting position. From here, I can move, but I have drop-foot on the right. That means I can walk, but it looks like a zombie limp. I don’t trust myself to pee standing up, so I sit down. I’m also a little numb in the plumbing department, so I wait to hear the dribbles splashing the toilet water. I finish, flush, and leverage the bathroom vanity counter on my left to pull myself up from the toilet.
The trick to managing an MS relapse is maximizing the time you spend in each space. I know that when I leave the bathroom, it will be a long time before I will make it back again. I start the water in the shower, thinking maybe a steamy shower will make the pain in my neck feel a little better. I also decide to brush my teeth while the water warms up. The problem is that I can’t fully close my mouth on the right side, so I have to lean over the sink as the toothpaste drools out of my mouth at a frenetic pace.
I finish brushing and use my left hand to try to scoop water into my permanently ajar mouth to rinse. I call for my wife to help me once again with the next phase of my morning routine. She comes to the bathroom and helps me out of my T-shirt and into the shower. She bought me a loofah on a stick and some body wash, but I still need her assistance to get fully clean. After the shower, she helps get me dried, dressed, and out to the living room recliner in just enough time to say goodbye to the kids before they leave for school.
I have been in this recliner since the morning. I work from home, but I am extremely limited in terms of what work tasks I can handle right now. I can’t use my right hand to type at all. I try to type with one hand, but my left hand seems to have forgotten what to do without the right hand accompaniment. It is insanely frustrating.
That isn’t my only work problem. My boss keeps calling to tell me that I’m letting things fall through the cracks. I try to protect myself, but he is right. My short-term memory is failing me. Memory problems are the worst. People can see my physical limitations right now, but not the brain fog that is taking a toll on me cognitively.
I’m hungry, but I also have no motivation to eat or drink. I can’t even remember if I had breakfast today or not.
My kids arrive home from school. I’m still in the living room, in my chair, right where I was when they left this morning. They are concerned about me, but — at the tender ages of 6 and 8 years old — they don’t know what to say. A few months ago, I was coaching their soccer teams. Now, I’m stuck in a semi-vegetative state for most of the day. My 6 year old cuddles up and sits on my lap. He usually has a lot to say. Not today, however. We just quietly watch cartoons together.
The home health nurse arrives at the house. Home health is really my only option for getting treatment because I am in no condition to leave the house right now. Earlier, they tried to reschedule me for tomorrow, but I told them that it was critical that I start my treatment as soon as possible. My only priority is to do whatever I can to put this MS relapse back in its cage. There is no way I am going to wait another day.
This is going to be a five-day infusion. The nurse will set it up tonight, but my wife will have to switch the IV bags for the next four days. This means that I will have to sleep with an IV needle stuck deep in my vein.
I watch the needle go into my right forearm. I see blood start to pool, but I can’t feel anything at all. It makes me sad inside that my arm is deadweight, but I try to feign a smile. The nurse talks to my wife and answers some last-minute questions before she says goodbye and leaves the house. A metallic taste takes over my mouth as the medicine starts to race through my veins. The IV continues to drip as I recline my chair and close my eyes.
Tomorrow will be a repeat of today, and I need to harness all the strength I can muster to fight this MS relapse again tomorrow.
Matt Cavallo is a patient experience thought leader who has been a keynote speaker for healthcare events across the United States. He is also an author and has been documenting his experiences with the physical and emotional challenges of MS since 2008. You can connect with him on his website, Facebook page, or Twitter.