First of all, I think I need to figure out how to fit writing into my pretty much full time job of meds/foods/exercise/detox in all its combinations and varieties. In a weird way being in tx (treatment!) is a bit like starting a full time job. Except you're not getting paid, are paying through the NOSE because insurance doesn't cover most meds, hurt like nobody's business, and have NO sense of motivation. Except somewhere deep within me it's kind of exciting to have a reason to get up. Even when I don't want to. Healing IS my job for the next 35 months, and I've always been a very responsible knock-your-socks-off worker. Of course I was more excited when I wasn't having "symptoms" ... and I am full up today. Sore burning feet, leg breaking pain, floaters, ringing ears .... the list goes on and on (go re-read that symptoms blog post.) I know the course of tx does not always run smoothly, but I want to be able to be consistent and do MY part of this healing journey.
So to avoid yesterday's late night post I'm on a writing schedule now.
Here we go.
I'm going to try and put two categories together as one of them flows into the other and they can become intertwined at best. Sometimes it gets down right nasty. Besides, then I get to check TWO items off my list of blog topics. So we're going to look at:
* What to SAY to the Chronically Living (and equally importantly what not to.)
* How to support a former friend/former colleague/family member with Lyme.
First off ... what to say to the Chronically Living. Good grief ... I'm going to have to get emotionally personal (not my favorite thing.) We INFJs like it up there in the safety of our own heads. Whew. Growth opportunity. Growth opportunity. Ok. In order not to sob all over my keyboard I'm going to have to go into list mode and get clinical about how we feel. About how I feel about being chronically ill. Sure, I can put on a brave front and say I'm Chronically Living, but aren't we all? What we all AREN'T is dealing with chronic illness.
1. I hurt more than I can adequately express and the physical is the easy part.
- Most of my "friends" are long gone. Not that they didn't love me, but our lives just don't touch anymore.
- There are members of my family who "don't believe in" chronic Lyme. Therefore, I'm out of their lives. Think I'm kidding? I saved the letter just to remind myself WHAT issue belongs to WHO. My response is MY responsibility, that's for sure. But theirs? SO ON THEM.
- I can no longer regularly be part of a spiritual community. This is a HUGE hit for me personally as my spiritual life and faith are integral to my being.
- I have very little support of any kind: financial, emotional, or spiritual. It's hard. I do see a counselor regularly and have to remind myself that while I like him VERY much he is NOT my friend. I am his client. Boundaries. I have to keep a FIRM hand on the reality of my boundaries and those of others.
Take away: Emotionally we're devastated on multiple levels.
2. I'm scared.
- I've read all the literature. It's highly unlikely I'm going to be cured. Truth. Do I stop hoping/praying/wishing for it? No. But I can't allow myself to entertain fantasies of returning to the level of health I had previous to illness. And if I DO get better/go into long term remission? I'm going to be in my 60's. I won't be 46. Those years are gone. Not wasted, but there's no-do over as a "healthy" person. There's a lot of loss there.
- How will I take care of myself? What will happen to me? These are very real, very valid questions and ones I have to take to G-d. No human seems able to be even willing to attempt to answer that one. And even G-d just promises to never leave me. He never promised me a rose garden. Or even a roof over my head. Isaiah. I love Isaiah.
Take away: Our losses are real and irreplaceable. We will never be our former selves again. We breathe this in and out every day keeping the fear and demons at bay. Breathing in good thoughts, expelling the bad.
3. It's not fair.
- It just isn't and there's nothing more to say about that. I can hear my mother snap, "RUTH ELLEN, who ever told you life was FAIR?!" She wins. This is not being unable to go on vacation, this isn't about those amazing shoes being sold out in your size, not even about getting your car hit in a parking lot, or having a drunk run a red light and smack you across three lanes of traffic into someone's front yard. This is kind of like winning the lottery in reverse.
Take away: All together now, "it's not a fair world after all." I bet you know the tune.
4. Related to but not the same as the above: It's not our fault.
- I worked hard.
- I was a good parent.
- I was a faithful spouse.
- My "yes" meant "yes" and my "no" meant "no." I didn't take advantage of others or manipulate them.
- I volunteered within the community.
Take away: We didn't mean to get sick. We really didn't. We were you and want what you do ... time with our loved ones, fulfilling work, honest relationships. That's all.
What to Say to the Chronically Ill
- I am so sorry for your losses.
- This is not fair.
- You didn't cause this. You know that, right? No? Ok. I'll hang on to that for you right now. (IMPORTANT: Do not make us false promises in the attempt to console us. We're desperate for hope and if it's extended we'll reach for it like a life saver. To have that withdrawn cuts like a knife and leaves us floundering for the millionth time wondering if we're going to be able to make to shore.)
- How can I help?
Take away: Please stay in our lives to the best of your ability. No, our bodies don't work in the same way but we're still in there. We don't expect you to give up your lives and plans for ours, but a little assistance would be a great thing and appreciated more than you'll ever know.
What Not to Say to the Chronically Ill
- You don't LOOK sick! You look GREAT ... darn, I wish I could lose weight like you do. (No, you really don't. Just stop eating as much and start exercising. Chronic illness is not a recommended diet.)
- Yeah? Well, my mother's best friend's cousin's neighbor had the same thing and HE/SHE got better!
- What'd you do? Go camping? Hiking? IN THE WOODS? (Yeah. Maybe we did. This isn't a crime. We Lyme patients were bitten by a tick. Coulda been you, dude. Coulda been you. Still could.)
- Call me if you need anything! (Sure part of this is on we, the ill,but it gets really old really fast to contact people and hear about how they can't help you because: they're going on vacation, will be at a party, are going on a girl's weekend away, are lunching with the ladies, busy with a Bible Study. Really. REALLY.)
- I think you're overreacting. Have you seen a psychiatrist/counselor? Pull it together. Snap out of it. Stop whining, I think you must LIKE being sick. What's that called anyways, there's a name for that. (Lunacy on the part of the healthy. That's what it's called. Lunacy.)
Take away: Treat us the way you'd like to be treated if you lost everything.
How to Support a Friend/Former Colleague/Family member with Lyme
Sounds similar but yet it's very different. Of course how one would support a family member is different than how one might support a former colleague but the principles are the same. Here are some things to consider saying:
- Can I stop at the grocery store for you?
- Are there any appointments I can take you to this week?
- Can I come over and chat or not chat? Just hang out? (Please don't take it personally if the answer is, "no." There are days just speaking takes excruciating effort. Convos are OUT. Please keep asking. We need you to. During visits be aware of signs of impending crashes. Watch the eyes for signs of pain or fatigue. Watch facial expressions and change in posture. Sometimes you'll need to help know when it's time to go because we really miss you.)
- Do you need any prescriptions picked up?
- (If appropriate to the relationship ...) May I pray with you?
- Make us laugh even if it makes us cry. Both are healing.
- Send the occasional card. (I have a former high school classmate who sends me random cards and when I see her name in my mailbox I get teary. What that act of kindness means to me makes me weepy as I type.)
- We miss you at work. How best can we stay in touch?
- Can I come over and chat or do you feel like getting out? (Please don't take it personally if the answer is, "no." There are days just speaking takes excruciating effort. Convos are OUT. Please keep asking. We need you to. During visits be aware of signs of impending crashes. Watch the eyes for signs of pain or fatigue. Watch facial expressions and change in posture. Sometimes you'll need to help know when it's time to go.)
- Send a card from time to time. Even a post card. Knowing one has not been forgotten helps in the loneliness/disconnect category.
(I honestly think this is THE most difficult category. Colleagues are just that ... people who work/ed at the same place. Some become friends but most stay in the acquaintance zone. It's still a hit to lose the day to day passing another in a hallway. It was familiar, it was quasi-comfortable. All that's gone for us now.)
- Call/email/text/PM frequently. We miss you. (Now it's gonna get personal again.) I miss you. Not being a regular part of your lives is almost unbearable to me at times. I spend hours recounting precious moments of our times together. Even the hard ones. Please help me know that you still love me. (I had "a moment" with The Lawyer the other day via email and I kept it so I could reread his loving words when I need to hear them. And I need to hear them.)
- HUG ME even if it has to be gently. Please allow me to hug you. I really need to. (MANY studies have proved the healing power of the human touch.)
- Believe me. Believe IN me. Believe that the healthy woman you loved as a mom/sister/daughter/aunt/whatever is still in there. Believe that I have the power to go on, go forward, and spin straw into gold. Your belief in me is soooo important ... much more than that of anyone else. You're my family and I am yours. I don't want you to pity me and I don't want to be dependent on you, but I need you. Sometimes that may mean saying "no, thanks" to something you'd rather be doing and helping me. Yeah. I'd rather be healthy and doing it for myself but as noted above, "Life isn't fair."
- During visits be aware of signs of impending crashes. Learn me. Me. Look at my eyes for signs of pain or fatigue. Watch my facial expressions and changes in posture. Listen for changes in my breathing. Sometimes, despite my tears, you'll need to help me know when it's time for you to go because I really miss you and don't want you to leave. I'll probably even protest that I'm FINE. You know me ...)
Yeah, I think that's it. I recently read a great article about what not to say to those who are Chronically Living. I thought it was a balanced and interesting approach to figuring out where one fits in the equation. The visuals are GREAT.
In addition a dear friend who also Lives Chronically passed on two fabulous links. One "But You Don't Look Sick" and the other, the "Spoon Theory" that explains how the energy levels of the chronically ill work ... or don't.
Off to the detox bath. Maybe someone can leave me a comment about how to share a link. I figured out pictures yesterday but the linkage is messing w/my head. No hyperlink ... you'll need to do the tedious, old fashioned, very low tech cut and paste.
But You Don't Look Sick!
The Spoon Theory: