Getting a break from the nightmares

August 17, 2018

While I have had symptoms of chronic illness for over 25 years (wow, that makes me feel old!) I only started having recurring nightmares in more recent years.

First there were the dreams where I felt the impending diarrhea and couldn’t find a bathroom, then when I finally found a bathroom the toilets were either set way too high on the wall (like, 4 feet off the ground!) or there were no doors on the stalls. I was trying to hold it in and feeling more and more desperate, but I couldn’t find a usable toilet that I felt comfortable with. I always woke up feeling stressed out and anxious.

Then there were the dreams where I’d be having a lovely time with family or friends. We would be passing food around the table and without thinking I would take a bite of bread or a cracker and after swallowing I would realize that I just ate gluten! Again, I would wake up stressed out and anxious. And wondering if I had really eaten gluten.

The dreams didn’t happen nightly or even weekly, but they kept returning. And no wonder. I was fastidious about avoiding gluten, but somehow I occasionally was glutened. And there was always the fear that I would slip up and eat it by mistake. There were multiple times I needed a toilet desperately and had trouble finding one. These were real life problems.

And the thing is, they still are. I haven’t been glutened in a while, but it’s happened this year, and I’m more nervous than ever about avoiding gluten. As for the diarrhea, I’d love to say that’s a thing of the past, but it’s not. It’s less frequent, and I’m incredibly grateful for that, but it still happens.

So imagine my surprise when I realized the other day that I haven’t had either of those dreams in months! I was free!

Will I ever have those stress dreams again? I have no idea. Even if I don’t, maybe there will be others. Again, I have no idea. All I know is that I’m not having them NOW!

I would love to say it’s because I’m less stressed out, but I’m not. In fact, lately I have been feeling more overwhelmed than I have in a long time. But at least I can get some rest in my dreams. I guess that’s a start.

2 Comments | Expectations, Milestones, Raves, Symptoms | Permalink
Posted by chronicrants

Am I losing my joints?

July 30, 2018

First it was my wrists. Then my knees. Then my fingers and then my toes. Every few years some new joints began to hurt. Until this year.

Suddenly, all at once, things are doing downhill fast. In the past several months I have developed pain in my feet, thumbs, and shoulders. The foot pain is from arthritis, and it is especially disturbing because I had x-rays done 3 years ago that were fine. In only 3 years there has been marked deterioration and we don’t know why. The thumb pain is from tendonitis, something I’ve never had before. We don’t even know about the shoulder pain yet.

A few months ago, none of these bothered me at all. Now, walking has become more painful than ever, my favorite hobbies of crocheting and knitting are extremely limited, reaching for things is painful, picking anything up hurts, sleeping is harder, and I am freaking out.

Why is this happening all at once?!? Well-meaning friends suggest that it’s weather-related, but I know my body, and it’s not that simple. And besides, let’s say it’s the weather for the sake of argument. How does that help me? That only means that for months every year I’ll be in extra pain? And over time, as the climate continues to change, it will only get worse. So that’s NOT reassuring. Besides, it’s not weather-related. The tendonitis could be, but that began before the heat and humidity set in. And weather did not cause the arthritis in my feet or the bone spurs that are developing.

I keep wondering: how much worse will this get?

For years I have assumed that eventually all of my joints would be come painful, but I expected things to continue in that every-other-year pattern. I would have been in my 50s before things got really widespread. Now, in my 30s, I’m seeing the progression and it ain’t pretty. What will happen if I can’t use my thumbs? How will I function? What if walking becomes even more difficult? What if what if what if?

What ifs aren’t helpful, but I’m only human, and I can’t help but think about it. I’m following doctors’ orders: stop standing on my toes, limit crocheting and knitting, do handy therapy exercises, wear new orthodics…. but it’s not helping. At least, not yet. And besides, the goals with those are to lessen the pain. The doctors agree that this new pain will be permanent. And that makes it extra difficult when well-meaning friends hear about what’s happening and say that hopefully it will go away. When I say it won’t, that this is permanent, they get uncomfortable. They want to offer reassurances but there are none to offer. I get that. I’m the same way when someone I care about is hurting. Still, it sucks that people keep suggesting it will get better. Haven’t they learned? ALL of my pain is permanent. Sometimes it improves, but it never goes away.

Today is a calm day. Last week I was so upset that I couldn’t even write about this. I’m sure I will have many more calm days and many more upset days. In the meantime, I need to find some rational, logical part of my brain to start figuring out why my joints are suddenly causing me pain so much more quickly than they used to. Then maybe, just maybe, I might stand a chance at slowing things down.

Leave a Comment » | Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

I wish I could stop my fake smile

July 21, 2018

Even at 12 years old, I knew not to milk my situation. If I exaggerated the pain I was in, cried unnecessarily, or complained too much, it would come back to bite me in the butt later. I was right, of course. Even without all of the theatrics, some doctors and teachers suggested my pain wasn’t real, that I was just trying to get attention. Assholes. The thing is, this idea that I shouldn’t exaggerate anything boomeranged, and soon I was pretending I was ok even when I wasn’t.

Sometimes that’s a good thing. For me, faking it until I make it can help. And I hate having people constantly ask me what’s wrong, so looking like nothing is wrong can help to prevent that.

But then, sometimes it’s not so good.

Today a friend stopped by unexpectedly. I was NOT in a good place. I’ll probably right about that another time, but basically, I’m in rough shape. The pain has been worse lately, and it’s spreading to more parts of my body for some unknown reason. I’m worried about the future. I might have to move out of the apartment that I love. I’m frustrated and overwhelmed and, mostly, very scared.

I started to talk about some of this with my friend. I could feel the start of tears in my eyes. But I didn’t want to get too far down the rabbit hole. If I tried to explain everything, it would just lead me to focus more on the thing I’m trying to get off my mind for a while. So I said I needed to stop talking about it. And a second later we had changed the subject and I found myself smiling.

Now don’t get me wrong, smiling is a good thing, especially when you’re happy. But I wasn’t happy. I was smiling because I am used to plastering that smile on my face, even when I don’t want to. It’s what made the LTD and SSDI trials so hard: I was supposed to let them see how I really felt, and I didn’t know how to do that anymore. After so many years of fake smiles, how could I stop?

Before my friend showed up, I was definitely not smiling. I wasn’t smiling after he left, either. But with him here, I smiled. I thought to myself, “I should stop smiling. He knows I’m scared and in pain and he’ll be here for me. I want to stop.” But I couldn’t.

When my grandmother died just a few years ago, I cried during the funeral. Later, at the shiva (a Jewish tradition where friends and family gather to console the bereaved) I found myself smiling a lot. One relative I didn’t know very well even commented on how great it was that I could focus on the good parts of my grandmother’s life and remain so cheerful. Little did he know. I wasn’t cheerful. It was an act. I was smiling, I had a bounce in my voice, and I was miserable.

My fake smile was helpful today at the grocery store. I looked and acted normal, so no one asked any questions. But with my family and friends, sometimes I want to stop smiling.

If only I knew how.

2 Comments | Expectations, Frustration, Isolation, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

Forgetting that I can’t work

July 13, 2018

She was telling me about her search for a part time job that would both meet her logistical criteria and be interesting for her. After years of working just a few hours each week from home, she wanted a change. Just listening, I got excited, and remembered the feeling of accomplishment I got when I worked. I started thinking that I should look for a job, too. Then I quickly came back down to Earth.

Of course I couldn’t work. She stopped working because she could: her part time work from home was lucrative, and her husband earned good money. She was in fine health and there was no reason for her not to get work if she wanted to. I, on the other hand, can’t work. I am too sick. Even my attempts to work part time from home have failed, resulting in worsening health and little money. My only success so far has been dog sitting. I love it, but it doesn’t cover my bills and it doesn’t use my brain the way my former jobs once did.

The strange thing is that this isn’t the first time I’ve forgotten I can’t do something. I had to stop working almost SEVEN year ago. This isn’t new. Yet sometimes I forget. Because I still feel like the old me sometimes, like someone who can go on dates and go out with friends and work full time and clean my own apartment. Maybe I didn’t always enjoying doing all of those things, but I did them. And now I can’t.

I struggle to reconcile who I was, who I feel I should be, and who I am. They’re all me, but somehow, they’re not. My abilities and disabilities alter my personality in ways I don’t expect, but then leave other parts intact, much to my surprise. So I forget. I forget that I can’t go on a hike or swim before heading to a party or get a job. And forgetting isn’t the problem. Remembering is the problem. Because remembering sucks. Remembering brings it all crashing back.

So I will try to support my new friend in her search for a part time job, while also trying to stay grounded in the knowledge that I am unable to do the same. Because right now, that’s my reality.

2 Comments | Expectations, Frustration, Job, Limitations, Rants | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »