This is the first day since I started Ocrevus back in 2017 that I have remained home without going to the Emergency Department overnight. That being said, last night was brutal. I only ended up getting 2 hrs. of sleep overnight. The anxiety I had from the unknown which I talked about in my, “Number 8,” blog entry was paralyzing. I stayed up till 3 AM because I was too afraid to fall asleep. I sat up in the recliner and kept my mind busy. It is not recommended by me because I had to get up so early in the morning to help my daughter start her day and get ready for her schooling that she is doing at home. My reserve tank as I call it was simply empty and I had to be ready to get up in just a few short hours. Why had I done it to myself?
When I did wake up this morning…I was stunned. I could swallow. I had no sore throat. I went immediately into the bathroom to gaze at myself in the mirror and I did not see a red lobster looking back at me. That description is what I call it because of how my skin looked the following mornings with all the other past infusions, like I was sunburned and as red as the reddest of lobsters. I was surprised. It was so unfamiliar to me that I was in a daze from being so over tired, but then realized I had to start more premeds and start a Medrol steroid pack as soon as I woke up this morning. It’s a steroid taper pack. Six days worth and you start out with the most pills on the first day and on day 6 you only take 1 pill.
I was thankful that my mom was home to help get my daughter started with her day and I got my coffee, breakfast and took 6 pills in the steroid pack at once. Anyone who is aware of it’s cousin, Prednisone, realizes how bad the aftertaste in your mouth is unless you swallow those pills at warp speed. And I tried. By 11 AM this morning I had still not slept more even with all my attempts to try. My mind just won’t shut off and there is a restlessness that is just awful. But I remember it all well…this is how it goes and I always come back to realizing that I have been here before. I can do this.
I am not out of the water yet so to speak until its been 72 hours post infusion. That is the time frame where anything is possible. Last infusion, my face swelled some and my lips were swollen. The redness too of course was all over my upper body and face. Today, I was looking back at myself and I looked like, ME. A strange and foreign reality that had been years since I had witnessed that after an infusion. What I know most of all is that to really rest is to come from a place of rest.
Those of us with MS know all too well that sleep is crucial for balance in our life and for us to feel well. I have suffered from insomnia since I was little. Most of my jobs that I had when I was working were overnights. I loved the night shift. I could sleep like a baby during the day, but never at night. And there was something about those wee hours of the morning before I headed to bed that was so peaceful to me. However, as years progressed and I got diagnosed I experienced fatigue in a whole new way. True fatigue for me is not the lack of sleep kind, but rather a whole body experience. I describe it like having weights on all your extremities pulling you down as you do the simplest of daily tasks. Some days, just getting up from a sitting position takes all the effort I can muster. Other ways it presents itself is, cognitive fatigue. where I have severe brain fog as we call it in the MS community. I can’t read well for the day. I have to have things repeated to me. I don’t understand what someone in my household is saying. I repeat myself what seems like a million times. There is also the ways that fatigue affects my breathing. I am now a shallow breather. I was told that in time MS may affect my diaphragm and in many ways I believe that process has started. The fatigue with MS just lasts some days all day or it can last a few days to weeks at a time. There comes a lot of self imposed guilt for all I can’t do and what I think my life or day should look like at the time.
How did I get here? Can I change it? The answer is, “No,” I can’t and I got here because I have a diagnosis and a disease that controls me in many ways. I accept it and roll with it. I do not make excuses anymore to others or loved ones and even my family. I now realize when I have to miss out on something or go to lay down earlier than I should that I give in because that is the best self care I can give myself. I may have a day or a few where I literally get nothing done. Just staying in survival mode and pouring into my daughter and husband at home is sometimes all I can muster for the day and all the other stuff can wait. I feel less than at times when I just sit and rest. The hardest part is not giving into the fatigue. I resist it and sometimes I make it worse. Which brings me back again to my point that it is crucial to come from a place of rest. Your reserve tank needs to be filled at all times so when you are using all you got during the day or the fatigue takes it all…you still have some reserve left to tap into.
My decision last night to stay awake because I was afraid my throat would close was not smart. I was at the infusion clinic for 9 hours and I had no reserve when I got home. I was depleted. Then, when you add in the steroids into the mix…you essentially lose sleep for a good 24 to 48 hours because the steroids amp you up. You become so desperate to sleep, but your body will not let you give in. My reserve tank is still empty. I have only still gotten 2 hours last night. What I did accomplish today was being full present for my daughter and getting her schooling done, cuddling. That is something way more valuable to me because it represents TIME. The sleep will eventually come and I know that. What normally occurs post infusion is tonight through a few days from now I will crash. My body will just say lights out and that’s it. What comes with it is a lot of flu like pain and heaviness of my legs and arms. I will feel paralyzed. Its incredibly unnerving. Scary.
My advice in my experience is to always have that reserve tank available. Make sure each day you add some to it so you always have a back up just in case you need to tap into it. For me…I went into my infusion yesterday on the usual 4 to 5 hours of sleep that I get every night. That is my normal. I was so worried about all that needed to be done at home that I couldn’t do after my infusion that I pushed myself as I always do. I, in essence, did this to myself. I would like to say I learn better each time. I also think that it’s just part of my personality. To push myself beyond what I should. Sometimes acting AS IF I do not have MS.
So the take away for me is to be gentle with myself this week. No one is taking a report on what I am accomplishing, but me. I know that for two weeks a year that this is my reality and yet has to be my priority. My infusion and the week after. Every 6 months. I have to let go of what my week may look like or bring and go with the flow. Embrace the messyness of it all. Which is very hard for me to do by the way. I plan to try better next time this coming July and make sure I am rested up going into the infusion. The funny thing is that in creating my blog to now share this life I live with MS, I surely would think I will not forget the next time. What I am most grateful for at the end of each day before I turn in for the night to go to bed is that God is not keeping score either. He is not going down a list at all I didn’t do with my time, but rather how I spent it. What was I feeding my soul with? How was I going about my day? What was my attitude? Where was He fitting into the REST that I was to be getting or trying to get? And I know without a shadow of a doubt that He would not want me depleted. When I am not resting or giving into rest or when my reserve tank is empty….I am further away from God’s presence more than ever. It is in the REST that I am the most at peace and content with whatever is thrown my way…I can handle it.
How do you REST? Are you functioning on all cylinders all the time? Do you have a reserve tank that you keep adding to a little each day so you are ahead of it all when life throws the unexpected your way? Think about it. See what you come up with.