It Is So Hard to Have Multiple Sclerosis and Lupus and…

…live in the moment. To be present. To be content with where I am at any given time. I don’t want them (MS and lupus) anymore! I want them to go away! Did I ever want them? No. I want them to leave me alone.

I really felt this last night. It was finally raining here in Los Angeles, CA (after a big weather shift) and it’s a big event because it doesn’t rain that much here. The media is all over it. It’s Storm Watch 2012! And you know what? I love the weather! I am a weather geek! My body, however, DOESN’T LIKE IT ONE BIT. When there’s an actual storm system on the way here I can feel it at least a week before. (I guess I should be grateful that I only feel it a week before now since I’ve been recovering from my last lupus flare in mid-2010. Before then I could feel it two weeks before–I swear it was even before Mother Nature decided rain might just have to come our way.) I don’t know how to explain the sensations. The atmospheric pressure starts changing and I start feeling a pressure sensation along with more pain and a certain type of heavy fatigue. Really, all kinds of crazy symptoms can happen. Usually when I start tingling all over I know it’s a crazy rain storm. The build up of pressure really messes with me.

That’s what was happening last night. I had started feeling like it was going to rain last Saturday. It drizzled a bit on Monday which gave me some relief and then the air pressure was going crazy after that and the past few days have been a bit rough. I could still deal though. Yesterday during the day I was tired but I usually am on Wednesdays. I usually try to take Wednesdays to breathe and refuel from the previous two days. But then something really changed and it got really hot outside compared to what it had been and very still and it felt like we were building up to a midwest/New England-type storm and we were in for it. BUT…IT…SURE…DID…TAKE…ITS…TIME…..

My poor body. The weather bullied and teased it until at least 9pm. I really started feeling very strange: short of breath, very low energy, pain, tingling, weakness, HEAVVVYYYY fatigue–it was crazy. I felt like I was going to burst physically and mentally. I was so overwhelmed. And then once it rained I expected (darn expectations) that I would feel much better and a lot of relief because that is what happens a lot. Sure I feel symptoms but I start being able to breathe again and the feeling of heavy physical pressure starts lightening and the recovery starts BUT not last night.

This is really hard for me to admit, even to myself. It was awful. I felt awful. I knew I needed to stop everything and go to bed and lay there but when I did and I turned out the lights it was so dark and quiet that all I had to distract me was Me. Yeah. Not good. What was going on with me at that point? I was getting waves of tingling all over my body and there was no way I could go to sleep. I was too aware of it.

I try so much now to live in the moment now because that is all I have. If I let my mind go into the future at all FEAR sets in. What’s wrong with me? Is this another attack/flare up/exacerbation? What do I do? How do I fix it? WILL THIS (UNCOMFORTABLE) FEELING EVER STOP?


Who wants to be where they don’t want to be? It’s uncomfortable there and my mind starts feeling trapped and I go around and around in circles. I HATE IT.

I’ll put it out there.


Why? Because I can’t control them and that make me feel crappy. It is times like last night when I feel like they are controlling me that the anger starts up again. I have to admit these feelings. I’m not always in this place. These diseases have taught me to slow down, to look up, to look around, to breathe, to live a bit more (even though I have other ideas of living too), to love, to reach out more, to learn to be with me, to take care of me, to love me as much as I can, to make healthier choices and the list is endless.

And thinking about it right now, PHEW. I DON’T HATE ME.

I’m the most important in all of this. I am all I have. I think I did in the beginning. I think I hated me for letting any health problem take over. I think I thought I must’ve done something wrong and that I was being punished and that was the overall feeling. I’m not going to lie at this point and say I never have these feelings about me anymore but when they pass through they do go away again and they’re not as intense. It truly comes in waves.

So how do I feel today so far. Well, after getting more sleep and rest this morning I’m feeling like I just might have passed this next wave. It’s usually hard to tell right after because I’m still feeling out my surroundings. The worst of the rain does seem to have passed when I look outside and see some sun and dark clouds sharing the sky. And physically I’m not feeling it as much either. And you know, seeing the sun and clouds share like that reminds me that it really is about sharing my body. I have what I want for my body and my MS and lupus have some other ideas. Apparently we all have to share. (There’s a lot of me right now that is struggling to share and even write this because then maybe I’ll have to actually share but I won’t force me. I can just try). It just gets very very crowded in there with so many things happening all at once.

I am grateful I could write this today and that I could write this at all.

Now…time to breathe.

Categories: Uncategorized | 2 Comments

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2 thoughts on “It Is So Hard to Have Multiple Sclerosis and Lupus and…

  1. Great entry. Our bodies are barometers!!! I hate MS too. And I hate Lupus for you and for several of my friends. But I LOVE ME SOME NAHLEEN!!! I’m glad you’re feeling better today, and I’m glad you found self-compassion in the storm.

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