After my first 500 mg of Rituxan I thought I had a handle on what to expect with my 1000 mg “fuse”. I knew I would feel like a super hero the day after and then slowly decline for a few days. It’s been 4 days since my 1000 mg infusion of Rituxan and I feel like I am on my knees. It’s been the biggest hurdle so far for my body physically and my heart emotionally. I’ve been faced with severe lack of mobility in my “junk” leg; being the left leg if this is your first time reading. I am now struggling with my fine motor skills in my left hand and severe fatigue that even getting up and walking to the restroom with my cane is taking my breath away. Last night I stood at the base of my staircase as I needed to go upstairs to grab something fast. I stood at the base of the staircase envisioning what it would be like to fly…or use “Go Go Gadget Helicopter” to get myself up the stairs without exhausting myself. I laughed for a moment when my husband asked me what I was doing. I replied all the while continuing to look up the stairs saying, “This is my Everest”. For the “Friends” fans out there it was a moment very similar to Joey at thanksgiving trying to finish Monica’s turkey.
I easily could have asked my husband to run up and grab what I needed but in the back of mind I always have the realistic view of my husband being 20 years my senior. What better time to learn how to adapt to my disability than now? I need to learn how to do things on my own. I’m very stubborn this way. I know that one day I will be relying on my two kids to assist me when I’m too old. I’m stubborn to even push myself to go back to the office. What else am I going to do? Sit at home and sulk? I might as well put myself to good use and take it slow. But even taking it “slow” is exerting so much effort that I am getting weaker and weaker. It’s disheartening to say the least and of course I’m making my jokes where I can. The moment I stop joking we all have something to worry about. As long as I’m crackin wise ones we are still in the clear.
It’s funny though. You never think that you need to focus on how to pick up a paperclip or switch hands to grab your stapler because you had to get a gold one that probably weighs a good 2.5 lbs. Way to go Swingline! The lack of fine motor skills has been super frustrating but again what can you do right? I’ve been told by so many that after a major full infusion that it brings us to our knees before raising us up. Boy were they right! I slept a solid 11 hours and the moment I woke up felt like I had not slept 11 minutes. I have been relying on my walking cane more than ever this week. But I’m noticing that even that is not enough to combat my “junk” leg and extreme fatigue.
So I finally gave in and took the next step to assist me for moments like this, whether it be to combat a flare up or for after my infusions. I purchased a rollator for myself and I have to say as reluctant I was to make this purchase, I am very excited to try it out. I am a busy body. I love to walk around. I love to stroll through malls and people watch. Grab a tea and putter around somewhere. I had to put my pride aside and stop being so darn stubborn because it will ultimately get me nowhere. Giving in to a body that I no longer had control over was more important than trying to prove to the world I could live with a disability without using the appropriate tools. It runs with the territory. I won’t always need it but when I do, there she is. She’s beautiful, white and very modern looking. I haven’t come up with a name yet as she comes in the main tomorrow. Thank you, Amazon Prime! But once I open the package, I will find a name for her. Thinking about taking this step I admit makes me tear up.
I was explaining to my husband that this holiday season is so different for me. It truly feels like an end of an era but the beginning of a new one. I think I have said goodbye to the old me. The me that hated needles and doctors’ visits. The old me who didn’t spend 5 minutes to pick up a paperclip. I think saying goodbye to anything can be difficult. But saying goodbye to normal body functions that you’ve known your whole life is a different struggle. I’m learning how to do things all over again. I’ve taught myself how to walk down a set of stairs without my leg buckling from under me by keeping my leg entirely straight and not allowing my knee to bend. The second I bend it down she goes. I get choked up from time to time like right now for instance. Writing this blog, I keep “checking” myself from falling apart. I will probably allow myself a mini “ugly cry sesh” later this evening which is normal. I mean I’m still less than 3 months into all of this. But the infusion has truly brought my emotions and lack of ability to the fore front. Coming from an artistic emotionally driven woman this makes for ONE HOT MESS. But it’s ok. I’m allowed to be a mess and then wipe up my mess after I’m finished.
I plan on vlogging my unboxing of my first rollator. Even putting this in writing is a hard pill to swallow but I am up for the challenge and I will not like other’s judgements and my pride get in the way of bettering my quality of life. I don’t care if I walk through life, roll through life or hop through life. I’m still living every day the best I can. One day at a time. A hot MS or not…I’m still here fighting the fight.