Thursday 14 December 2017

What to do when you feel trapped

The thoughts come unbidden, without warning. 

I'm scrolling through Instagram, and when I see a post about Sedona, I get a sudden jab of pain right in my solar plexus. We wanted to go there in January. 
I wonder if we will ever get to see it now? 

My friends tell me they miss us, and ask when we'll come down for a visit. 
If things continue the way they are, it will be only me. Or none of us, because I can't leave him.

I go to work, do chores, go to every doctor's appointment with him, do all the shopping, cooking and cleaning, pay the bills, do his business correspondence, administer medication, soothe, listen, go back to the doctor for more medication, clean up messes, respond to worried friends' emails, ward off intruding visitors he can't handle, and do more chores. And I do it gladly, because I love him. 
But sometimes, I resent it. 

I wonder: is this our life now? Will it always stay like this? 
Omg. How can I learn to live with this?

I haven't shared much about my husband's mystery illness until recently. I don't know why. Maybe I was hoping it would just go away one day. Don't acknowledge it, and it's not real.
Every morning, I'd ask him, hopefully: "How do you feel today?"
And every morning, without fail, the same miserable answer: "Terrible."

It's been 4 months. 4 months of pain, grouchiness, uncertainty, fear, brief hope, only to be dashed the next day by an attack worse than anything we've had before. 

I can't tell you what it feels like to live with chronic pain. I've never had it. My husband is the one who has been suffering from debilitating pain, yet "everything is normal" test results for the last 4 months. As you may know or can imagine, it's beyond awful. 
I think the only reason why I can talk about it now is because we have hope. We think we may have figured out what his mystery illness is. We are currently still waiting for the results of the notoriously unreliable blood test, but we need hope (and we believe in the power of positive thinking), so we pretend that the test will come back positive, that he will start on antibiotics, and that "in 2 weeks, everything will be so much better!" We cling to that. We need it.  

Rich is wrapped up in his illness. He's on the couch/in bed 90% of the time, only venturing outside once a day to feed his birds, because he feels better (physically and emotionally) when he does.

But what about the caretaker?
What about me?

I still have to live in the everyday world. I have to deal with all the little and big nuisances that crop up in a normal life, while having to stay positive and upbeat for Rich's sake. 

How do I keep my sanity?

In the last few months, I have developed a few routines that help me cope with my normal tasks, his illness, and all the extra crap that you have to deal with when your love is suddenly out of commission, scared, and in dire need of you.

1. Don't take it personally. 
He gets crappy. He is in constant pain, he can't sleep, all of life's joys are suddenly taken away from him. He is scared, and uncomfortable, and he doesn't know what's going on. It's understandable that he is crabby. Omg, we all would be!
But, I'm just a person. I have my own shit to deal with, in addition to his illness, and sometimes I get sensitive, and I get hurt, and I want to scream at him that "I can't take it any more!"
But, of course, neither can he, and we're back at square one.
We talk very openly about each other's feelings, and he knows (and understands) how frustrating it is for me as well.
The most important fact about this is to remember: It's not about you.
We both have to deal with a shitty card that's been dealt to us, different for each, but shitty just the same. In the end, we have to remember: We are in this together.  

2. Make time for what makes you happy. 
I need to walk. Need to. If I don't walk, I get antsy, and angry, and dissatisfied, and slightly stabby. So, in the name of public safety, I carve some time out every day to walk in some form or another. It may be a long, satisfyingly strenuous hike uphill. Or it may be just 10 minutes around our own property. Whatever it is, it's me and the dogs, and usually a story in my headphones via audiobooks, to transport me away from the everyday hassle to my happy place.
I swear, it works every damn time.

3. Escape. 
Don't be ashamed when you want to escape for a while. I do it every single day. I love our life, but I'm really afraid that our current situation might turn into a permanent one. To escape the incessant obsessing, I like to immerse myself into other people's lives for a while. I've been watching Mad Men almost since the beginning of Rich's illness, and witnessing all the drama and the desperate housewives' lives on there makes me feel grateful for my own.
I've also been reading lots this year, and listening to audiobooks as much as always, which gives me great comfort.

4. Share. 
Writing is my life line. It's kinda impossible to describe what it feels like to share my struggles on here. It's - well, it gives me peace. Clarity. Insight.
It makes me feel like I'm doing what I'm supposed to be doing, in the place I'm supposed to be doing it in, with the person I'm supposed to be doing it with.
It feels good. Right.

5. Don't be hard on yourself. 
You know, for a self-proclaimed yogi, I should be doing yoga all the damn time, and get all the above benefits from it.
Well, I don't. I'm a flawed yogi. By the time I have done chores, work, walked the dogs, cooked dinner, and spent some time with Rich, the last thing I want to do is yoga. I plop myself down in front of Mad Men, pour myself a glass of wine, and veg out. And I made myself be okay with it. It won't be permanent, but for now, I only have the energy for a couple of yoga sessions a week. And that's just the way it is. It has to be okay. It is okay.

6. Be amazed at yourself. 
To be honest, I've expected to burst into tears every day for weeks now. Yet, it still hasn't happened.
Every time I get angry outside at having to carry another fucking heavy hay bale to the horses, I simultaneously think of a story I could write about it, and I smile inadvertently.
When I come to work, weary and in a less than cheery mood, one of my co-workers will make me smile, just by being their cheerful, black humoured-selves (who can be down when you hear about the "poop cloud"? Remind me to tell you that story some time.)
You are much stronger than you think. 
Be proud of yourself. 
You deserve it. 

xoxo Miriam



  1. I don't know why I didn't think of this the other day - call me dense. I am emailing you a link to one of the women recently diagnosed. I am emailing you the like to as article about living with lyme. You can find her on FB too. She is a cofounder to a group I belong to - Soul Sisters On Fire.
    And OMG - love Mad Men - that show is the reason I drink Vodka Gimlets - LOL

  2. Great post Miriam! Being the "sick" one, it is good to hear what it is like for the spouse. I think both parties experience a lot of loss. Loss of what life was like, loss of what you wanted your future to be, loss of how you want to be living in the present day. It is so painful and was the worst in that "not knowing what it is" stage. Being sick is hard, but so is watching your healthy spouse be sick. And that not having hope thing circles around so often. When I started feeling a bit better and then would suffer a relapse, it would send me right back to feeling hopeless. But once I saw that it was not permanent and would go away again it makes it easier - especially knowing it will be back at some point, but it wont keep me down forever! I have felt bad for my husband as our plans have been canceled or have to be approached with a wait and see attitude. I feel like I hold my husband back at times and I know it has to be boring at times for him when I have a day where I need to be in bed resting. It really is hard for him to know what I am feeling, not being the sick one. I think unless you have been there yourself it is really hard to know. I have a friend who struggles with chronic pain, and it was hard to really empathize because I really didn't feel what she did...but now I do. :( It's just plain hard no matter whether you're the sick one or the healthy one with a sick loved one. It is so great that you recognize what you are feeling and take the time to care for yourself as well. I hope that soon there will be some healing so you both can see that hope at the end of the tunnel! I am so grateful for my husband and for being there for me and I am sure Rick is glad he has you too! Hugs to you both!

  3. You are amazing! 2018 is going to be an easier year. Now you guys have answers and Rich will be feeling better soon.

    1. He is, one tiny step at a time. Your Ava will be out of her brace in 2018 too, won't she? It's an exciting year for both of us!


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