Wanting what we can’t have

I had a little (or not-so-little) meltdown last night. It wandered all over the place, starting with my jealousy of others and the unfairness of others having an easier life to finally facing my disease square in the face and being so incredibly angry that there’s no way out.

I get it, life isn’t fair. And my life has actually turned out pretty well, even in spite of my illness. All of my petty tantrums about the things I have to give up, things I think I deserve, don’t really mean anything in the long run. I need to stop thinking that I deserve or am entitled to anything; that’s not how life works.

I’m just feeling sorry for myself, which I have no right to do when there are people in my town who don’t even have money for food. Even if my usual shopping-for-leisure budget is only about $20 a week and I have to give that up for the foreseeable future, not being able to shop for fun isn’t the worst thing. It’s probably more a sign that I have to check my values and priorities and find better ways to spend my time.

I got a further reality check when I saw that the founder of one of my MS support groups on Facebook died suddenly tonight. She was only five years older than me, taking the same new drug they wanted to put me on that wipes out your immune system. Her last message was three days ago, saying she had caught her husband’s cold. But there was nothing to indicate the end was near.

That really hit me hard, is still hitting me hard. That could have been me if I took that medication. Could still be me even without the medication.

It’s not a lack of positive thinking to say that I’m not actually sure I’ll get better from this particular relapse. This is the longest I’ve ever been sick. Steroids haven’t helped me in a couple years. Even when they gave them to me in the hospital last year, they didn’t make me significantly better. There is no treatment; I just have to wait and see if it goes away on its own.

I’m mad at the fact that other people don’t have to face these concerns. I’m mad that most people my age have decades of being able to work ahead of them, the opportunity to achieve future goals and travel once all their kids are grown. My mother-in-law has been telling me for years that things would get easier (especially financially) once the kids we’re grown. But that’s not actually going to be the case. I feel like that’s all been taken from me.

I wanted to see this concert in October, in part to fight against the progressive onset of my illness. I felt like it was a big F-you to my illness, to do so while I was still physically able. I’m barely able to do it physically as it is, and apparently not at all financially. So maybe those days are already over. I spent so long in denial and it took so many years to get diagnosed that I thought I’d get better. It really snuck up on me that I may not.

I don’t want to feel so sorry for myself that it becomes a self-fulfilling prophecy of doom. At the same time, I never went through this stage of the grieving process and I think that might have been a mistake. I think I needed to face this to come to terms with it — but I can also see why I was avoiding it.

One thing is sure: I am turning more to faith. And faith is helping me learn the value of suffering, which is something pretty foreign in modern American culture. It’s also helping me keep a perspective that just being alive is something you can’t take for granted. It’s not really about how much money you have to spend or how much you have in relation to others. Unfortunately, I haven’t yet found a way for faith to give me hope, though, and that’s what I really need.

In reality, this is probably a PMS-fueled bit of depression, in which it feels like nothing will ever be good again. After all, I’ve been pretty sick for three solid months with no end in sight. Not only did I recently face the fact that I can’t work full-time anymore, but I also lost all my freelance clients. Even without PMS coloring my perspective, this is a really scary time.

Will it ever be good again? Will I ever have spending money again? Most likely yes on both counts. Worst case scenario, if I don’t get any regular work back, I’ll have spending money again when I get disability, even if that’s three years away.

Will my current round of illness ever stop, letting me go back to how I used to feel? Possibly. As I said before, I’ve never been this sick for this long, so I don’t know what’s next.

Even if I’m embracing the spiritual value of suffering, that doesn’t mean I’ve yet learned how to suffer gracefully or stoically. Maybe I’m supposed to learn that and it’s just not going to be fun.

I wanted to see the world. I wanted to make it back home to see my parents again at some point — I certainly didn’t think it would be more than four years without seeing them. We worked everything out when I was hospitalized last year and I miss them. But I’m definitely no longer well enough for a two-day car trip and I can’t afford plane tickets. Hell, I wanted to take the kids to San Antonio (just six hours away by car) this summer and even that never ended up happening.

I think this is the transition time where everything changes. I have to focus on what’s really important, to be grateful for what I do have and for how comparatively well I am, especially in contrast to the people with MS who are in wheelchairs. Yes, I hurt a lot and I’m moving more slowly, but I’m still mobile. I haven’t lost that much function. I can still do nearly everything by myself that I could before, it’s just harder.

I just have to stop mourning what I didn’t get to do, the things I didn’t get to have. I have to get better at sucking it up.

I did what I could while I could, even if I now regret not doing more. Now I have to figure out what I can still do. I have to create a new definition of happiness and success that has nothing to do with what I buy, how much I can travel, how much I advance in my career. What’s next?

5 Comments

  1. Goodness Holly I felt every word you wrote in this post. I have been having mild to major melt downs weekly, who am I kidding during bad weeks my melt downs are daily! I have been fighting through the terrible relapse I had last year and even though my MRI has improved, I still feel so much of the same pains! Stress has taken up residency in my mind considering my husband has not worked in almost a year, I am working 6 hour days and ALL the bills keep coming at the same time. It seems that bills do not care if finances are BAD, they still want their money!

    I think it is normal for those of us living with an illness that takes part of us away to be a little jealous of others that get to live a normal life. The only way I can get through days sometimes is to tell myself I was just meant to live with this because of the strength I hold internally. I think I hide behind my internal strength so no one around me will see the pain I feel.

    I am so sorry to hear about your friend that passed. I think that when some people, with or without an illness get sick it can take them away. There is a person in the blogging community that offended me SO bad a few months ago when she told me that MS killed her sister. It is never MS alone that kills people, it is normally an infection that the body can’t fight off, which I guess is what happened to your friend. Just because y’all were on the same medicine does not mean this will happen to you. Chin up sweetie and stay the strong woman I know you are!
    You might think I am insane, but I believe all of our stories were written before we were even born. We are just here to play the part that was created for us. We are not the author that started the story, but we can be the author that completes the story.

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    1. Thanks, Alyssa! I am so sorry you know about these struggles too. But it helps a little to know we’re not alone. So many people don’t understand this disease and how many challenges it adds to the normal issues of life. And of course I know you know how stress can make our symptoms worse. It’s a cycle that’s really hard to break!

      Keep your chin up and keep fighting. I know your life is really hard but you’re making a difference in the lives of others, especially with your encouragement!

      Liked by 1 person

      1. Thank you Holly! It is comforting to know I am not alone and there are people that do understand. I think people in my day to day life have no idea! Stress definitely makes things much more intense, but I still can’t seem to control it at all!

        I hope your weekend has been nice and I hope you are feeling okay. You already know that I am always here for you!!

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    2. Oh, and I meant to add that I don’t think you’re insane at all! I do think our stories were written before we were born and there may not have been anything we could have done to change it. But it’s up to us to figure out how to handle it!

      Liked by 1 person

      1. Thank you so much!! Most people seem to think I am insane, so I try to not say this to many people. I feel like we are just simply planning a part and we can’t really change the outcomes!

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