They say when you meet someone with MS; you’ve met someONE with MS. Each person that lives with the disease has different symptoms and reacts differently to treatments/therapies. That’s important to know. A lot of people who I meet tell me about their Aunt who had MS, so they expect me to look like her (maybe she was confined to a wheelchair most of her adult life). When I don’t, it’s confusing to them. Or, I get, “But you don’t look sick”, because I’m walking OK right now, and most of my current symptoms are invisible (but chronic).
I’ve written about the struggles I’ve had with my bladder in a previous blog post titled I Really Need To Pee . It was a good overview of how MS affects my ability to pee (or not pee) when I need to. In my case, it’s been retention – when your bladder feels full but when you try to empty it, nothing happens. More recently, I’ve experienced overactive bladder, when I have the urge to pee constantly, but when I try, nothing comes out.
For the last few months, I’ve had nothing but trouble when it comes to my bladder. Retention that isn’t resolved by my implant, suggesting that the normal signals from my brain (or implanted device) are not working. Self catheterization has become my new normal; causing pain, infections, and extreme frustration. My Urologist prescribed a couple different prescription medications that unfortunately didn’t help relieve any of my symptoms.
If you haven’t experienced the discomfort and inconvenience of this particular MS symptom, you really have no idea what it does to you – both physically and emotionally. My bladder dysfunction was affecting just about every aspect of my life. I would avoid going places because I feared the inevitable question in my mind: “What if I can’t go?” I had to do some traveling for work and if I wasn’t assigned an aisle seat on the plane – panic would set in. On a four-hour flight I would get up and try to go no less than a dozen times. I’d get a lot of people looking at me; I’m sure wondering why I was going to the restroom so often. This is when a shirt that says something like, “I have MS, look it up!” would come in handy. Seriously.
A few weeks ago I underwent outpatient surgery to try to dilate (or stretch) both my bladder and urethra. It’s called Cystoscopy with Hydraulic Dilation of Bladder and installation of Meds into bladder (Steroid Marcaine Solumedrol). The recovery was much more painful than I expected. I had to come home with a catheter since my bladder and urethra were not going to be happy and cooperate when it was time for me to pee. I was a bit shocked at the amount of blood in my urine, but my doctor assured me it was
normal. There’s nothing normal about it, I think you’ll agree. We’re still not sure if it did what it was supposed to do yet, it’s a “wait and see” kind of procedure, but I’m hopeful.
I woke up early Monday morning with pain in my throat. I didn’t think much of it and went about my day, visiting my Chiropractor (who is amazing, by the way), and running a few errands. By lunchtime it was so bad, I couldn’t swallow without extreme pain on the right side of my throat and ear. I called my primary care doctor, who instructed me to go to Urgent Care right away. Four hours later I was sent home with a diagnosis of Cellulitis of Pharynx (fancy name for bacterial infection of the throat), prescriptions for pain meds, antibiotics for 10 days and a sore hip where I was given a 500 mg shot of Rocephin (another antibiotic). Did I mention it was my 45th birthday? Happy birthday to me!
Because my blood count isn’t where it should be, and because with MS, your body can’t fight infection like someone with a healthy immune system can, I’ve had my share of infections over the last six months. I have felt extreme fatigue, pain, sadness, loneliness, and some days – hopelessness. I have become extremely independent living with MS for over 20 years. I often go into hiding when I’m going through a tough time. I do not want to be a burden to anyone and I tend to keep people at arm’s length when I know I shouldn’t. Luckily those closest to me understand. My goal is to have more good days than not so good days. I’ll get there, I promise. But lately, I’ve been having some pretty big bumps in the road on the way to a healthier me.
As with most of my writing, my hope it that by sharing my experiences, as embarrassing as they sometimes are, it will give people a better understanding. About MS of course. But also to know and appreciate that invisible, chronic and painful symptoms are often the most difficult to deal with. Whether we’re talking about MS or a different disease or illness. Don’t judge the person that parks in a handicap parking spot, or uses the restroom on an airplane way too often (I threw that in just to lighten things up a bit), you have no idea what they might be dealing with on that particular day.
I came across this quote that inspires me and gives me hope when I need it the most. I printed it and read it every day.
“You are not useless. You are not hopeless. And no matter how scared you are, you will never be alone. And deep down, somewhere, in the part of you that decided the good days and your happiness and your health were all worth fighting for, you know that, too. Hold onto that knowledge. It will see you through the worst.” ~ Ella Ceron