Stress

As I get ready to 'mash' the publish button in blogger, I'm feeling stressed about publishing this post. It's quite vulnerable, long, and a bit repetitive I fear. Yet, isn't it ironic that I just finished writing about reducing stress and I'm stressed about the post? Here goes, before I chicken out again!

On Monday, I had my first follow-up appointment with Dr. Neuropsych Lyme, a twenty minute phone consult which went really well. (I still have to blog about the initial appointment!).

As we were discussing the recent medication changes, my anxiety and depression levels, sleep, etc. Dr. Neuropsych Lyme broached the subject of stress in my life. I mentioned that I always feel stressed. I'm always overwhelmed. 

What I got was a strong case for really figuring out how to reduce stress in my life if I truly want to improve my body's ability to heal and recover as much as possible. It is the first time a doctor has really laid this out for me so strongly. I have Jeannine telling me day after day that I need to be better at finding ways to reduce stress, but of course, until it came from Dr. Neuropsych Lyme I didn't 'wake up'.

Dr. Neuropsych Lyme suggested that I rearrange my life in a way that I am not so stressed. Put things on hold. Don't take on any new challenges. These are some pretty big things!

Stress directly affects our immune system making it more difficult to focus on healing and recovering. He said I need to reduce stress so that I am not fighting a battle on two fronts, and can focus on the latter.

He noted that one tendency of chronically ill people is to focus on stressful things right before bed. All day long our bodies are on sensory overload from sound and light, so when we get into bed and have some quiet time, we tend to start thinking about things. How true this is! So, I need to find better ways to keep myself distracted, come out of the state of hyperarousal, and turn off the mind, body, and brain!

Also, because of the hyperarousal of my ANS, it is easy for me to go into a high stress mode, but very difficult to wind down from a stressful event.

It is also very important for me to get restorative sleep because lack of quality sleep also depletes the immune system.

Now, what Dr. Neuropsych Lyme said isn't rocket science. I know that stress makes me sicker. I know that people with chronic illnesses need to avoid stress. But I tend to minimize this aspect of healing.  

Recently one of my closest friends, who has known me both before and during illness, wrote: I know that you sometimes de-prioritize your "rest" or time that should be focused on medical stuff to stay in touch and reach out. And, I know that even when you aren't actively reaching out that you are using up your mental energy thinking about your friends (and even worrying for them). 

How do I reconcile this? It's a compliment to me to be 'this person'. It's part of my identity to be this way. I love, love, love that she feels I'm always there for her even during my illness. But it is also a wake-up call to me that I can't keep being the 'old me' and find a way to best heal. 

Since these conversations with friends and Dr. Neuropsych Lyme, I've been doing a lot of thinking (and trying not to do it all at bedtime! :)):

What makes me stressed?

What can I still do even when I feel crappy that I enjoy? Or that decreases stress?

How can I nourish myself and still nourish my relationships (which are the most important thing to me)? How can I continue to be compassionate, loving and supportive of others yet not compromise my own health?

How do I let go of guilt?

How do I stop feeling selfish when I'm spending all of my time 'taking care of myself'?

I don't have answers to these questions yet. Still processing it all. But I feel like I got a 'prescription' for reducing stress. One that is just as important as taking my other little pills every day. 

Stress is universal to all of us. Unfortunately it affects those of us with chronic illness even more deeply. Both good stress and bad stress can make me sick. (This really and truly sucks!) It's an incredibly frustrating added limitation to the already countless limitations of chronic illness. And I think I speak for most women when I say we have a very difficult time putting ourselves first without feeling guilty or selfish! (My mom does not serve as a good model for taking care of oneself! And she would readily admit this.)

It is very easy to de-prioritize reducing stress. It feels like less of a necessity than calling in that prescription refill or trying to get insurance coverage worked out. 

For me, being sick feels very selfish. (And this is a theme I hear a lot from others with chronic illness.).  I already require a lot of care from others. I don't contribute financially or physically to the household or to others. So, the only thing I know how to 'do' is to over-compensate emotionally, often at the cost of myself. 

Just the word 'doing' is so strongly emphasized in our society. I come from a family of 'doers', not 'be-ers'. My mom grew up with the messages that: Life is hard. Life is work. For my dad, his mother was the hardest working woman he has ever known. (And boy was she ever raising sixteen children!). 

People are so incredibly generous and loving to me, that all I want to do is be able to give back to the world. I fight against my limitations constantly, rather than accept them. I come by my desire to be a 'doer' naturally.

On Wednesday afternoon, I took my prescription for reducing stress and reclined outside on the porch in the beautiful weather. I listened to some of a book on CD. I painted my nails for the first time in a year. That evening I watched a movie. 

It was all I could do to not feel guilty that my mom was at work missing the nice weather because she has to support me financially and can't retire yet. It was all I could do not to feel selfish for indulging in self-care and not spending time doing something to 'contribute' to the world around me or support a friend. 

And seriously, what is up with that? I would never judge my friends the way I judge myself. I'd tell them: Hooray for you! Enjoy! 

Still, I feel like all I do is take care of myself as it is. So to spend the parts of the day that I'm not engaging in managing my health knitting, blogging, listening to a book, etc. feels like I just get to sit around and leech off of others all day long. Yet, I'm doing all of these things while feeling like crappola! It feels overly indulgent, even though it is literally a necessity for healing.

I've spent my entire life hearing that I'm selfish. I heard it from my parents. I heard it a lot as an only child. "Oh, you're an only child," people would say. "You must be spoiled. You must be a brat." Was I spoiled? Probably. But that doesn't mean I'm a brat. 

So when I think about stress and reducing it, it becomes much more complicated than saying no to my inbox, or no to a visitor, or no to a fellow Lymie who is seeking support. I'm being forced to face the fact that stress is a huge contributer to my wellness, and I can't keep minimizing it. I'm being forced to face deep-seated beliefs about myself. I'm being forced to accept a part of my illness that I have, in all of these 12 years, been unable to do: that I can't be what I want to be to everyone in the ways I was before illness. 

My grandmother may have been the hardest working woman I've known, but she was also one of the kindest and most compassionate women I've ever known. What I remember about her as she aged was her struggle to not 'do' as much and spend more time being. She spent many hours a day in prayer. I admire her greatly for her endurance and hard work, but I also admire her greatest gift to her family: keeping them connected through love. And making each one of us feel loved. What I loved most in her was kindness, compassion, and love.

I feel guilty about not being able to be there for others the way they are for me. I feel guilty about taking so much from my parents emotionally, physically and financially. I think I have enough Jewish and Catholic guilt to cover for several people. Guilt, too, is a word I hear from my friends with chronic illness. And it is a true waste of our mental energy.

Of course, one of my biggest sources of stress is the medical maze of insurance and coordination of care. Dr. Neuropsych Lyme had great compassion for how difficult insurance companies make things for people with chronic or complicated illnesses. And Pennsylvania is a difficult state insurance-wise.

I may not be able to get rid of much of the medical stresses that accompany chronic illness, but I can find a new balance, find ways to better accept my limitations, find ways to engage more in activities I enjoy when in the moments I'm not just 'getting through' the day. For the foreseeable future, living with chronic illness will continue to be my full-time job. And it's a crappy 24/7 job. Lately, with all of the battles for home care, out patient port access, trying to figure out the next steps Lyme-wise after our trip to NY, I was so exhausted mentally, that it was all I could do to watch some fluffy TV at the end of it all.

In the midst of this 'job', I'm determined to find new ways to be less stressed so that I can give my body, mind and spirit the best possible environment for healing and recovery. Tips, especially from those who are sick and unable to engage in the typical stress-reducing activities, are welcome. I'm thinking Netflix? :) I've also been adding in some very, very quiet supine yoga (I'm a pro at corpse pose! :)). I just might start painting my nails regularly. And I'll keep watching fluffy TV, listening to good books on CD, and hanging with Mr. Fuzz. Oh, and I think I'll pick up my knitting needles again. Discover some new beautiful, healing, lovely music.

That sounds like an excellent prescription! In fact, I just wrote an Rx for each of you!

Thank you for continuing on this difficult journey with me as I struggle to find a my new balance and accept my limitations lovingly.

Here's to learning to chillax!

Blessings,

Emily

Photos: Grasses in our yard at sunset.