Grieving all over again

September 30, 2019

Chronic illness is never easy, and some days it feels harder than others. Lately, what has been getting to me the most has been my limitations, especially the ones due to Celiac Disease. I am angry and resentful that I can no longer attend an event and eat the food, friends no longer invite me over to dinner, I can’t simply grab lunch someplace while I’m out for the day. I hate having to worry about every little trace amount of gluten, having to wash my hands carefully before eating or taking a pill or getting a hair off my tongue. I can’t stand that I will never again be able to spontaneously kiss someone without first making sure they brushed their teeth.

But why now? I gave up gluten almost eight years ago. Is it because the increasing restrictions and caution came on so slowly? It took years for me to realize how sensitive I was to gluten. Even so, it’s clearly bothering me more now than it ever has before.

It was my therapist who pointed out what should have been obvious: I was grieving. It’s natural to go through the 5 stages of grief multiple times with chronic illness. After all, we don’t suffer a single loss, but many losses, which come up at different times.

Thinking about this several days later, it occurred to me something else that should have been obvious: the reason this is happening now is because I didn’t have the capacity to grieve before. I didn’t even have the capacity to acknowledge the magnitude of my loss before. I was busy surviving. I gave up gluten just a few months after leaving my job. At the time, I still hoped to return. During the next year I realized I would not be going back to work any time soon, I eliminated even more gluten from my diet, I found a naturopath, I researched new doctors for my thyroid care, I signed up for government benefits, I hired a lawyer, and more. I didn’t have time to care about giving up gluten. Besides, back then I thought it was just a matter of giving up some foods. I didn’t yet know all of the other things I would be giving up.

Over the following years, I continued to research treatments, doctors, tests, and more. I dealt with government benefits, changing apartments, and other logistical issues. I started businesses and had them fail. It was a busy time, and I remained in survival mode.

And then it slowed down, in a way. I am not looking to move right now. My benefits are stable for the moment. My health is always a concern, but with the latest addition this summer of hydrocortisone, my brain fog has lifted and my energy has somewhat improved. My health felt more stable for a bit, my mind was more clear, and I was able to think. At the same time, in the past year I have come to realize more than ever just how cautious I must be about gluten. The two came together and hit me hard, all at once. It’s no wonder I’m grieving.

Add to all of that one additional fact: the permanence. All of my health issues are permanent, but there are degrees. My pain will never go away, but it could improve. My fatigue may or may not ever go away, but there’s hope that it will, or at least that it will improve. I can work towards these goals. But when it comes to gluten, there’s no way I will ever be able to tolerate even the tiniest crumb again unless there is some medicinal breakthrough. Maybe that will happen, but I can’t count on it. Right now, there are no treatments on the market. That means I can’t let down my guard at all, and possibly never will. Again, it’s no wonder I’m grieving.

The important thing now is to let myself grieve. I have lost a lot, and I have years of it all catching up to me at once. This is hard, especially for someone who prefers to avoid unpleasant emotions, but I know it’s important. So these days, I am trying to sit with my feelings, to acknowledge them. It’s not easy, but I know that one day the worst of the grief will pass. I may never again be able to kiss my mother on the cheek, but one day I will come to accept it and it will make me less sad.

Do you grieve your chronic illness’s impact on your life? Please share in the comments. Sometimes it helps just to share what we’re going through.

4 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Trying to be careful without getting in my own way

September 18, 2019

I am super sensitive to gluten. I have known that for a long time, but it amazes me every time I get glutened. One time, the culprit seemed to be some grapes that someone (who had been handling bread) picked up and then put down, and which I then ate without realizing (until it was too late) that they had done that. This last time, I think it was gluten on my own hands that did me in.

Last month I wrote about starting a new medication and the difficulties in getting my doctor to increase my dose. What I didn’t know when I wrote that piece was that I had just been glutened. That might explain some of my increased anxiety, though not all of it. It definitely explains why I wasn’t responding enough to the medication. As soon as the gluten symptoms went away, I felt how much the new med was helping. That took 19 days. Yes, 19 days. Yikes!

For the first week and a half or so, I barely left the house. Then I started to venture out a bit as needed. The final week I was mostly ok, at least enough to resume most activities, despite the extra pain, fatigue, and bloating. After almost three weeks, the symptoms subsided. The thing is, once I realized that I had been glutened, I tried to figure out how it happened, and there was no obvious culprit. I had not eaten a single thing all week that didn’t come out of my own kitchen. I quickly narrowed down the possibilities:

  • Something labeled gluten free actually had gluten in it.
  • I didn’t wash some produce carefully enough.
  • Twice I ate a meal outside of my home. I brought the food with me. Maybe I got crumbs on the container and transferred those to my hands somehow, and then ate something with my hands.
  • I ate a sliced apple and after a slice or two I realized I hadn’t cleaned my hands.
  • I had a hair on my tongue. I did my best to remove it without using my fingers, just in case they were contaminated.

These all suck. They suck because I am already being so careful in each of these areas, yet I got glutened anyway. There’s no doubt that it was gluten, the symptoms were very clear. I will never know for sure how it happened, but I know that all of these are hard to avoid in the future.

Before this latest glutening I was incredibly careful. I promised myself that this wouldn’t change anything. I would continue to be as careful as I had been before, and I wouldn’t try to control things more. It’s not healthy for me to be so hypervigilant. It takes a severe toll, emotionally and physically, and it doesn’t stop me from getting glutened. It can’t. I will get glutened many more times in my life. I try to keep it as minimal as possible, but there’s only so much I can do, and I have to be realistic.

Yet I have found myself being even more careful over the last few weeks. I hate it, and I am trying not to let this control me, but I don’t know how to do things differently. I don’t want to get glutened again if I can help it, and knowing that it’s inevitable to some extent isn’t enough to make me relax when I am out and about.

For example, I played a card game with friends. They were all eating appetizers and cookies, and I was very aware that they were probably transferring gluten onto the cards that I was touching. I made sure not to eat anything without first washing my hands. That’s fine. The problem is how anxious I felt about touching the cards to begin with. It made me anxious to know I was getting gluten on my hands. I feel like my own body is constantly unsafe whenever I leave my home, and that’s no way to live.

I am trying not to worry about the many ways in which my own home is not completely gluten free. I am sure that my phone is contaminated from being out in the world. I don’t clean every item that comes into my home. Grocery packages probably have gluten on them. My purse probably has gluten on it. My winter jacket will probably have gluten on it. My library books probably have gluten on them.

And there is nothing I can do about any of those things.

I must learn to stop being scared of gluten. Yes, it can hurt me. It could even kill me. But I have to continue living my life, and I can not do that if I am always afraid.

I am trying. It is not enough, but it has to be enough for now. Because what other option is there?

2 Comments | Expectations, Frustration, Gastrointestinal, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Feeling a mysterious new contradiction

June 19, 2019

Last night I went to a Meetup group for the first time in 7 or 8 months. The folks there greeted me warmly and asked what I had been up to, and why I hadn’t been around. And the thing is, I found it hard to answer, even to myself.

I had been thinking about that before I went. At first, I was busy. Then I didn’t feel well. Then I felt better, but I was trying to catch up from not feeling well. It was never a priority – yes, there were times I could have gone but chose not to. But also, lately I have either been feeling too ill to go out, or else I’m feeling pretty good and I’m using that opportunity to catch up on household chores, fun projects, and spending time with close family and friends.

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Most recently, the surprising thing is that for the past month or so, I have been feeling so much better, while at the same time I feel that I am struggling more than usual. This is new to me, and hard to wrap my head around, much less describe to someone else. The closest I have come so far is a battery metaphor, since this is mostly related to energy and fatigue (though other symptoms play a role, too.) My battery never gets to 100% anymore, and probably never will. But lately I feel like I struggle to get my battery as high as it had been. If prior to the past month it sometimes got to 65% on good days, now it never gets above 50%.

But here’s the surprising part: it goes down more slowly. Before, it wouldn’t take much for me to go from 65% to 50% to 40%, but lately I feel like I can do a lot more at 50% before I drop down to 40% or lower. It’s an odd feeling. I’m more tired on my best days, but I can do more because I stay at 50% for a lot longer.

I want to know what this means. Is it a sign of improvement or a sign of deterioration? I believe it has to do with going off of an adrenal supplement. The goal was to stop the supplement for 2 weeks so I could take a test, then resume it. The first few days were horrible, but then I actually started to feel better. I had to put off the test for an extra week because of scheduling issues, and by then, I wanted to see what would happen. After all, I really did feel better than I had in a while. Now it’s been 5 weeks and I am anxiously waiting for the test results. What will they show? Will I need to go back on the supplement? Will I instead need the prescription that we were contemplating? Or is my body better off on its own? I am figuratively chewing my fingernails in anticipation.

My body is a series of mysteries. Sometimes there are answers, but far too often I never find out what is going on. I have learned to accept that for the less pressing issues (though sometimes I later find out they were more important than I had realized) but since fatigue has been my most disabling symptom for many years, this is tantalizingly close. I can almost feel the answer to the mystery dangling in front of me, but I can’t quite reach it. I am aching to know, though, if I am improving or deteriorating. Could I be on the verge of a breakthrough? Or is it the edge of a downward slide? Maybe the iron infusion that I had dreaded is having an affect? My fear is that the test won’t give conclusive results, and I won’t know why I feel this way or how to proceed. I should find out any day now, and until then all I can do is wait.

I see doctors constantly, and when they ask how I have been, it is almost always hard to explain. But now the answer is that I feel both better and worse at the same time. I hope they can help nudge towards more of the better.

 

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

Yes, it’s a choice

June 11, 2019

One thing my therapist is helping me realize is that many of the things I do for my health are actually choices on my part. I often feel trapped, like I have no options, but that’s actually not true.

Take the party I went to recently. I put on my sexy new dress: tight, red, showing cleavage, and making me look hot. This is the sexiest dress I’ve owned, and I didn’t want to ruin the effect by wearing my big, bulky knee braces. So I made a choice: I didn’t wear them.

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The dress I wore with the knee braces I didn’t

I wear those knee braces every time I leave the house, but since I knew I wouldn’t be doing much walking, what if this time I didn’t? What’s the worst that would happen?

Well, long term I could do permanent damage by wearing away cartilage, but that wouldn’t be an issue for one evening. I would be in pain, but maybe that would be ok? I know the pain, and it would be manageable. I should still be able to drive home, which is the deal-breaker for me.

So I did it. I brought the braces with me, just in case, but I left them in the car. I wore cute sandals with my orthodics in them. The dress calls for heels, but I knew that level of pain wouldn’t be worthwhile. I’m better off in sneakers, but really didn’t want to do that. I wanted to look good, damn it!

I was in a lot of pain for the first part of the party. Eventually, though, I found a good balance between sitting and standing. It meant sometimes sitting when I would rather stand, but that happens a lot even when I wear the knee braces.

But it also meant that I felt good about the way I looked. I kept forgetting that I was “passing” as healthy, so when I asked a guy out on a date and he said yes, he didn’t know about my health issues. When I showed up to our date in a cute dress and knee braces, I had to explain. I wasn’t doing it to pass, though. I wasn’t trying to hide my health problems. No, I was simply trying to look good in my new dress. And what’s so bad about that?

It is a privilege that I was able to make that choice. I know that some day I might not be able to. But somewhere in the midst of everything, I realized something important: I wasn’t simply choosing to not wear my knee braces. I was choosing to boost my emotional health at the cost of my physical health. That was the true choice that I made.

Within two days my knee pain levels had returned to normal, but the memory of how I felt all dressed up has stayed with me. It’s spring now, and even though I wear skirts and dresses almost every day, I will be wearing my knee braces whenever I go out. That, too, is a choice that I am making. The thing I have to remember, though, is that it is a choice. I am choosing whether or not to do the thing that is best for my physical health. And occasionally, it best not to do that thing, and to give my mental health a boost instead.

Leave a Comment » | Decisions, Frustration, Limitations, Pain, Raves | Permalink
Posted by chronicrants

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