Maybe I have unrealistic expectations

The stairs of death and the sorting chair.
It always comes down to this. The most basic things are my undoing. But when I thought about it more, I am starting to realize something that is probably painfully obvious to everyone but me.

And that is the simple fact that this might be as good as it gets. I keep hoping to somehow feel better. But maybe this is feeling better! Maybe this is it.

I remember when I first went on Tysabri and The Great Scott explained to me that it might help me to feel a little better but it could take up to 6 months before I noticed anything. He told me that disease modifying drugs (DMTs for those in the know) are primarily intended to keep your disease from progressing, not to undo existing symptoms.

Even knowing that fact full well, with every passing month after that 6th infusion I got more frustrated. It wasn’t helping me. Other people in the infusion room got 20-22 “good” days a month. I got no good days a month. It was frustrating but I hung in there. I knew I only had a year of safely taking Tysabri because of my JC positive status. I was on month 15 when Ocrevus was beginning to get a lot of buzz.

TGS told me he thought I’d be a good candidate for the new goo, as he called it. He said it might help me feel a bit better but more importantly it might help stop the progression of my symptoms that seem to have just kept getting worse and worse as time went by. I know I have relapsing/remitting MS on paper but I’m telling you here and now, if I’ve ever had a remittance, I sure as hell didn’t notice it. Each passing week there were new and ever more frustrating symptoms. My walking got worse and worse. I finally started the walking drug – and that helps, but it only helps. It doesn’t fix me. It merely makes me able to walk very short distances. I was all about jumping on the new goo bandwagon.  Hope is another drug I can’t resist.

That’s the thing about us early diagnosis people…you can’t quite give in to thinking that this is what it’s going to be like now. You can’t quite stop waiting for the miracle that’s going to mean this whole hideous experience was just a bad and very long dream. You grasp at straws.

So I went off Tysabri for the famous, more like infamous, two month flush. I felt horrible. I barely left my house for two months. I could barely muster the energy to get through 3 or 4 hours a day completely conscious. I managed to work. I managed to get into the office every now and then  but it was ugly. I felt horrible.

The thought starting sneaking into my broken brain…maybe it had been working all along. If this is what I feel like without it, it had to be helping more than I believed. I just didn’t know how bad things could get. I wouldn’t allow myself to go there. I had to believe it wasn’t working and my struggle was all Tysabri’s fault and not the fault of my broken central nervous system. I had to believe that because the alternative wasn’t palatable to me.

I pinned my hopes on the new goo. When I got approved for Ocrevus I did a little happy dance. So it made me more likely to get cancer. So what? I would be less likely to get PML and that’s nearly always deadly so…winning! I can look for cancer. I can prevent it or treat it. That was much more appealing to me than a deadly brain virus. Sign me up.

I had a few really great days after my first infusion where I got the first half dose. I did then and I do now chalk this up to the hit of Solumedrol they give you with the Ocrevus. It wore off and I kind of went back to before (I couldn’t let myself call it normal…I can’t accept this as normal yet). This time, though, I had some lingering post-two-month-flush things going on, things like terrible back pain, weakness in my thighs and really bad headaches the kind I’ve never had before in my life. I might have felt a little less fatigued but not much. I focused my hopes on the second 1/2 dose. I mean, how much could a 1/2 dose really do?

I made myself feel better. I allowed myself to believe there was hope to get back to “normal” by focusing on the magic that would happen after my second half dose. I had a crazy busy work week and I made it through somehow so that’s a good sign, right?

Well, you probably know already what I’m going to tell you. I had my second dose on May 23. It’s almost a week later and I’m here to tell you that it’s been a tough week. I’m struggling. I remembered I took the week after Memorial Day off from work on Tuesday morning after Memorial Day and I was beyond relieved. I didn’t feel strong enough to shower AND go into work. I knew it was going to be a day of “or’s.”

My legs are still weak as hell. I’m actually having pretty severe balance issues, which is new for me. The headaches continue. I’m not feeling great. I keep trying to pretend I do then I do something that should be easy, like taking a shower or changing the sheets on my bed, and I have to hold on to the bed or the walls of the shower because I’m trying not to give in and simply go down because the pain in my lower back is so sharp I feel like I’m being cut in half.

There are a few things I need to do this weekend before I go back to work on Monday.  Changing the sheets was one and that almost did me in. I did what I’ve been doing during the two month flush – I laid on the bed for half an hour after I finished and waited for the pain to go away. The kitties have come to really love this tradition. They walk all over me purring and head butting and being generally lovable but that really only helps a little. I feel pathetic. I had the thought I have so frequently lately, “This has to get better at some point. It HAS to get better.”

The other tasks on my list are just as boring. Laundry, because when I’ve run out of pajama bottoms that I haven’t accidentally peed through at some point or other during the last several weeks, it’s time to do laundry. First I had to sort. My back was throbbing so I realized quickly that I had to sit. Hence the chair you see above. I sat in front of my giant laundry tub and I sorted. It reminded me of how I put my clean pillow cases on – while seated on the bed. It’s what I have to do. For now, is what goes through my head as soon as I type those words, but is it really only for now? Or am I being delusional?

I know there will likely be four trips up and down the stairs while I switch loads, carrying laundry up and back down, you know the laundry drill. You probably do it without even thinking. You are probably annoyed by it but it’s nothing more than that, an annoyance. I feel like I’m doing a triathlon. FOR NOW, I think again.

But is it?

Maybe the new goo is only capable of doing so much. Maybe this is it and I should stop thinking about for now and start figuring out how to accept this reality. I need a chair to sort laundry. I need to sit while putting pillows in pillow cases. My pain is almost constant and also makes me feel very tired. This is just what it’s like now. Things like this will happen to all of us as we get older, it’s inevitable. We will all slow down. Age isn’t really avoidable. I’m just getting it all at once. It isn’t like losing a limb. It just makes little things big things and fast things impossible. It is what it is!

The other things on my list for today – grocery shopping, pet store and a shower – those will wait until tomorrow. They will have to. I’m tired of thinking of a time when “this” isn’t going to be like this. It’s probably not going to change and I need to accept it. It could be so much worse! I have happiness in my life, in spite of it. It probably looks nothing like your vision of happiness or even my own vision of happiness from two years or so ago, before my diagnosis. But I’m not unhappy. I’m just annoyed.

So I think my new quest, since I always seem to need to have a quest, is to figure out how to stop waiting and hoping to feel better. My new quest is to adjust my thinking (again).

I need to stop being disappointed when the pain comes, or when I have to sit down, or when I can’t do things I wanted to do. It is what is is. We all have our things to deal with in life. This is mine. This is my latest, I should say. There will likely be others to come cause hey, I have a chronic disease! That’s chronic degenerative disease life, man, it only gets worse.

The real truth is that I won’t be able to stop hoping. I know myself too well. But I am hoping that I do better at not beating myself up for my failings. I need to stop feeling like I’m failing because I’m not getting better. Maybe I will get better! Maybe that day WILL come. But until it does, I have to just live and stop waiting to live.

I have joined a few Ocrevus support groups today on Facebook that have already been helpful. It helps to hear about others and their experiences with this brand new drug because so little is known about how or when or if it works. Just knowing that I’m not the only one who is on the new goo who isn’t feeling all better yet makes me feel better. Just knowing that there are others who are waiting, waiting, waiting to feel better and getting frustrated that it hasn’t magically kicked in just yet. Reading one woman’s comment about waiting it out, not expecting miracles after one dose made me feel better. It might mean nothing, but it made me feel better.

I’m going to cultivate patience and peace. If it doesn’t get better, I will learn how to be this new me and not be miserable. I know I will. Because I have to. This new life is different, so different than what I expected to be living right now, but it isn’t terrible.

Gotta go now and switch loads. It’s almost bedtime and I need clean jammies. Clean jammies and clean sheets. See? Life isn’t bad. Life is just different.

One thought on “Maybe I have unrealistic expectations”

  1. Aww, Beth! I feel sad yet elated as I read. I hate that you feel disappointed in what you can’t do, but you’re not realizing that it’s tough to do all that stuff as it is! I get tired reading it.

    Having pets is work. Living alone is work. A job! Pain takes away energy! An illness! Cut yourself some slack. Do whatever it takes to get through a day. You’re Winning daily.
    Keep the HOPE going ~ and the Humor! You are loved & we love your writing! ❤️? Ame

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