Thursday, April 24, 2014

It's Complicated

Last fall I got shingles again-- twice.

I think the stress and sadness of packing up Jack's room and moving away from the house we loved did me in. Recovery was pretty quick, but I was left with neuropathy on my upper back. It is a constant burning, tingling sensation that gets worse as the day goes along.

Then in November, my shoulder became frozen somehow. After weeks of physical therapy (ouch!) I had regained almost all of  my range of motion. Until I fell on black ice in my driveway, aggravating the frozen shoulder and injuring my OTHER shoulder.

It has been weird to be in almost constant pain. Not excruciating pain, but pain nonetheless. Sleep is the worst, because my shoulders wake me up throughout the night. I'm going to see an orthopedist today and will probably end up back in physical therapy again to break up the scar tissue. I'll let you know what I find out.

So, I've been thinking about chronic pain. The neuropathy has been around for 8 months now, the shoulder pain for about 6, so it's not like I've been in pain forever. But it's easy while in the midst of it to think that maybe it won't get better. I just don't know.

Also, it's as if no one in my house remembers that I'm in pain, or as if their interest had a very short shelf-life. Soooooo, do I wince as I move my arms and groan as I toss Advil in my mouth at bedtime? Will that gain me some measure of acknowledgment, or just make me look like a baby? If I were bleeding from the head or had a gaping chest wound, I think it might attract some notice, but my upper-body woes don't even get a, "How are you feeling?"

I have a friend who has dealt with debilitating headaches for well over a decade. I don't ask her about it every time I see her. Does she even want me to? How do I let her know that I know when I see her out and about that it has taken her a lot of effort? When she was going around to a parade of doctors, and spending time at the Mayo Clinic hooked up to a bunch of electrodes, perhaps then people asked her about her headaches more often. But what about in the day in and day out of being a wife, mother, and managing her pain? What about my friends with Lyme's Disease, RA, and MS?

Maybe they want me to ask, maybe they don't. I don't want to talk about my pain constantly-- I just want the people in my home to mention it with a sympathetic head shake, an "I'm sorry," or quiet cluck-clucking noises once every couple of weeks.

All of this thinking about pain has led me to think of grief.

When I actively had shingles, in all their oozy itchiness, it was easy to say, "I need to rest; I have shingles," or right after I hurt my shoulder, "Sorry, I need to go ice my shoulder now."

Similarly, in the days, weeks and months after Jack's death, our pain was right on the surface. I would venture to guess it might even have been visible, our anguish showing up on our faces and leaking out in tears. Now it is beneath the surface, ever present but not acute. Our pain has lessened considerably, but it is not going away.

I've learned a little about Complicated Grief , and that people suffering from it have symptoms ranging from suicidal thoughts, inability to enjoy life, anxiety, and difficulty with daily living. Complicated grief can happen to anyone, but certain risk factors are: an unexpected or violent death, a close or dependent relationship to the one who died, and a lack of resilience.

The symptoms I've mentioned here are not at all unusual while grieving, but they become Complicated when they don't ease up over time, causing the person to get stuck.  Some signs that someone is grieving, but is not experiencing complicated grief, would be that the person is somehow adjusting to his/her new reality,  the person is allowing himself/herself to experience the pain of the loss, and that he or she is able to maintain relationships with other people.

But, I wonder, is grief (straightforward, un-complicated grief) a chronic condition?

I think perhaps it is, because I know the pain and the gaping Jack Donaldson-sized hole will be part of me forever. Loving him so much means that space can't be filled with something or someone else. However, the hopelessness and the bitterness have abated, along with my magical thinking and ardent desire for time travel (well, maybe not entirely!). I don't feel stuck in my grief, and I am able to experience joy in a way that didn't seem possible two years ago.

If my grief is indeed chronic, I will remind myself that people deal with chronic conditions every day. They bravely learn to adapt, to live with the pain and manage it as best they can. Their symptoms may in many cases be invisible, but the fact that they are functioning and living life fully is a visible testament to their resilience and adaptability. I can do that.

Now if I could just hook my bra without wincing.


42 comments:

Dawnges said...

Dear Anna,
I haven't commented on your posts in ages, but I do read each one and catch up if I fall behind. I'm writing today because I LOVED reading your words. Thank you. I'm compelled to let you know that you come to mind often--we keep Jack's picture and magnet on our frig, and I pray for you, Tim and Margaret when you come to mind. Shalom, Dawn

KathyM. said...

This entry is very wise. My husband calls people with invisible pain "the walking wounded." I've suffered from anxiety and depression, which is invisibly painful, too. I have thought of creating a group for such people, where they can be allowed to be honest about the pain. It probably wouldn't be healthy in some ways, if all the group did was talk about pain...I don't know.

Meanwhile, I know what you mean about wishing for acknowledgement of pain. I suspect our families don't want us to have any ills because they feel safer, especially children. My strategy is to simply say to my husband, "I'm having a hard day; I could use a hug." Then he knows what to do and I feel better. It occurs to me that you might not want a hug with sore shoulders, but maybe a gentle one?

Anonymous said...

Gosh, it IS complicated. I wonder if the shingles and the shoulder, etc. are connected to the grief. The grief is the chronic condition (which I think you make a great case for it being), and these other things are flare-ups, if you will, and are symptoms that are related to the condition of grieving? I don't know. I loved how you describe your being in pain as being ignored by others when it's not "visible." It's true. But as caregivers, we are expected to soldier on.

love,
jbhat

Kerstin Auer said...

Very powerful words, my friend. I do think that grief is well described as a chronic condition. We learn to live with it and even experience joy in our lives, but the reason we grief never goes away. It's never going to be ok that Jack is not there anymore and that hole will be in your heart. But I am glad that you have learned to let other joy into your life and that you are helping so many people by writing about it. xo

Arnebya Herndon said...

The resilience it takes to move on after grief is nothing short of miraculous, to me. I'm sorry you're hurting (and you know I mean emotionally as well as physically, even though I know the Jack-sized hole is an often physical ache just like your shoulders). Know that I'm thinking of you, daily, even as you twist to hook your bra. Wait.

JoAnne Harmen said...

Hi Anna,
I've been following along with you for sometime now. I'm commenting today because I think I actually have something to contribute (as usually you seem to have the right words). In the case of your neuropathy - our body and mind are one and our body quickly tells us when something is not right in our mind - however sometimes we are slow to listen. When living with grief we sometimes think we are ok as long as we are functioning, even if it's not functioning well. I have been a long time sufferer of my own grievances and of neuropathy along with chronic headaches. I wanted to share with you my healing path - recent self exploration/growth/mindfulness and diet changes and I am beginning to heal both mentally and physically. And it's a good feeling. Directly to the neuropathy though - dramatically reduce sugar and caffeine intake. I know it's so hard to give these up but it is so worth it to relieve the neuropathy. You could start with a 3 or 7 day juice fast (fun project) to purge your system. Just a thought. All the best, JoAnne

Catherin said...

I dont think anyone has explained, as well as you have, experiences that I can relate to. Whether its chronic knee pain, or a healing heart, pain makes us weary and it challenges our ability to "flip" our thoughts easily.
Thank you Anna for this validation of a thought, I have had, but haven't been able to articulate the way you did here. I am going to share this with my family and friends. I absolutely love the way you share your talent.

Anonymous said...

You should read the books by Dr. John Sarno called Healing Back Pain-the Mind Body Connection and The Mind Body Prescription. You can probably get them at your library. He basically explains how issues in your subconcious cause real pain in your body. It is the way your mind keeps you from tapping into those emotions. By causing physical pain, you deal with that and not the emotional pain. I started to have debilitating hip pain 5 years ago and achilles pain 3 years ago. These books were the only thing that helped. Cortisone shots, PT, PRP injections didn't. I believe it was all related to a horrible disease my father got and died from last summer. I am now virtually pain free, back to running 5 miles at a clip.

Sherri said...

Anna,
I've commented on posts in the past but not in ages. We were out of our home due to Hurricane Sandy. It has (literally) taken me over a year to remember/find links of blogs I loved to read.

I've been catching up on your life, which, if I'm being truthful, sounds totally creepy. But hey, that's what this is about.

With each post I read, I am amazed at how insightful you are, even amidst grief. I don't have kids and will never know the loss you've experienced, but please know your words have touched me just the same. (also sounds creepy when you think about it)

I am going to pre-order my copy of your book right now. Congratulations! While I don't know you, I am so proud of you. (creepy, again. I can't win.)

Sending ever-healing thoughts to you from New Jersey.

Debby@Just Breathe said...

Interesting analogy and I tend to agree with you. Grief is never ending and chronic illness doesn't end either but you learn how to live life in a different way. Great post Anna. ((HUGS))

Anonymous said...

Also, it's as if no one in my house remembers that I'm in pain, or as if their interest had a very short shelf-life. Soooooo, do I wince as I move my arms and groan as I toss Advil in my mouth at bedtime? Will that gain me some measure of acknowledgment, or just make me look like a baby? If I were bleeding from the head or had a gaping chest wound, I think it might attract some notice, but my upper-body woes don't even get a, "How are you feeling?"


Anna, stop being so passive-aggressive. You are a grown woman and it is degrading and embarrassing for you to be pouting around waiting to be acknowledged like a seventh-grader after a dance. If you want your husband and daughter to ask about your pain or acknowledge it more, for goodness sakes communicate that to them without sulking or acting like a martyr. That sort of behavior is a huge turn-off, very frustrating to deal with and very alienating, not to mention extremely unfair to expect a little girl to pick up on hints and pouting and play guessing games with adults. I know this because I grew up with a mother who pouted and sulked and expected people, especially my father and me, to read her mind. It was truly awful. Don[t do that to Margaret, and don't do that to your marriage. It's a petty, small way to behave and so above someone as smart and strong as you are.

I have lived with daily, constant chronic pain for almost twenty years now. Some days are harder than others but I have a patient spouse who is usually good with helping out, and when he is knee-deep in his academic writing or grading and forgets a little, I remind him or ask for what I need without moping or drama.

Salvimom said...

Dearest Anna,

I hope all things are as well as they can be. Even though I don't comment often, You are always in my thoughts and prayers. So in a virtual show of empathy, I want to express to you that I know you are in pain, and I acknowledge it. I cannot fathom what you feel, or have felt, but my heart and thoughts reach out to you constantly, and I am reminded. On that note, please rest those ailments dear, because we in this world need you to fill our brains with your beautiful writing. God Bless you and yours.

Ury

tacykay said...

Thank you for this post, Anna. I know you write as a way to help others understand grief and I want to let you know that, waaaaaay over here in CA, it's working. You are helping me understand my stepson's grief over his mother (lost 4 years ago to brain cancer). He's in Complicated grief, and stuck at age 13. He even wrote and directed a play at school about stopping time (so kind of like time travel?). I was just complaining to my husband last night that I didn't know how to dig deeper to help my stepson, yet today your words gave me a needed new perspective. Thank you.

Emily said...

I've been reading your blog for sometime but have never commented. Someone once told me “when emotions are involved, logic often takes a coffee break. Grieving is a strange, strange cloak, and once you've been given it to wear, it is always a part of your wardrobe, and on some days, you take it out and try it on just to see if it still fits…it usually does. It’s the one piece of clothing I don’t think you ever outgrow.”
I've found that has described my grief very well.

A Speckled Trout said...

I have had shoulder pain for years. Apparently, it is really neck issues that manifest in my shoulder. Go figure. Regardless, it can make me whiny and miserable often.

Just yesterday I was reading the comments on a blog that were so mean-spirited I went back and read the post...certain that I'd missed something. Like the "anonymous" here schooling you on your behavior, I have to wonder why those that seem to be so certain of what someone else should do never leave their name. If I thought I were that smart I'd want everyone to know who I was.

I think a lot of pain is connected to our hearts. We are also connected to each other so maybe trying a little tenderness everywhere (including comment sections of blogs) will make us all feel a little better.

Sarah said...

With all due respect Anonymous, I do not believe Anna is being passive aggressive. She is sharing her thought process and experiences. And yes, some days there may be moping and drama but Anna is human. She doesn't get everything right, none of us do. I understand the intent to your post but I believe your choice of words and delivery were rude and hurtful. When you talk to people with love and kindness you can say things that may be hard to hear but when you choose to attack you are no better than what you are accusing them in the first place.

Anonymous said...

Sorry to comment on something so not-on-point here, but be careful with taking advil too often! My mother is a nurse and she talks often about the damage she sees done to the lining of people's stomachs and to their livers by ibuprofen. It's way more dangerous than is generally realized. Ask your medical friends. And Tylenol is even more dangerous. http://www.forbes.com/sites/melaniehaiken/2012/01/17/deadly-dangers-from-drugstore-pain-meds-a-painful-surprise/

Be careful!

E. in Vt.

Anna Whiston-Donaldson said...

@anonymous 12:35 pm: That must have been really hard to be around growing up. I'm sorry. I have always been grateful that own my mom did not use those types of behaviors or guilt trips to try to motivate us, even though she could have. I have been very open about my needs with my family and will continue to check myself if I begin to lean toward passive aggression. It's a tempting trap to fall into. Also, I'm sorry about your chronic pain.

Joyce said...

So beautifully written, Anna!xo

Noah's Mom said...

Oh, Anna...you SO 'hit the nail on the head' about the chronic pain & everyone in the house forgetting that fact! I have lived with neck pain (which I think triggers migraines) for almost 4 years. Sometimes I DO make a little 'groan' noise or a big sigh, just because after being the care-taker, problem solver, plus the wearer of 100 more hats...acknowledgment once in a while might make it somewhat easier. They do seem to forget in time! But I guess as Moms, we're not allowed to feel that way!
I am sorry you "have been given the cloak of grief" (as another poster so perfectly described it). And just know that we all think of you, pray for you, and love you. Thank you for sharing with us.

Shannon Wallace said...

Beloved, yes, I'm afraid grief is a "chronic" sort of condition. It cannot be healed this side of heaven. I'm reminded of the verse:

"Weeping may endure for a night, but joy cometh in the morning."-Psalm 30:5

When we go through such a loss and endure utter grief, it becomes eye-opening that others suffer chronically too, doesn't it? Grief makes us more compassionate towards others, showing the love of Christ.

I pray you feel better soon. It's hard to deal with grief, and then add shingles and chronic pain too. God bless you!

Anonymous said...

A different Anonymous here...

I second the Sarno book recommendation. Twenty years ago, I decided to simply not deal with a traumatic event that had occurred--to completely put it out of my mind. I succeeded in that, but not-so-coincidentally, my body began falling apart. Within six months I could barely walk. The back pain was the worst, so I stumbled upon Sarno while looking at books for treating that condition.

You will not regret reading this book. It literally changed my life.

OSMA said...

Gracious Anna (you know what I'm talkin' about), I too am so sorry for the physical pains that never seem to leave you alone. Shoulder pain is so frustrating because there's not one movement you do that doesn't somehow tweak those muscles. I have no great advice other than continue on your healing path in ways that feel right to you.

Some swear by yoga yet I find yoga positions stressful. Maybe you're more of a punch and kick girl to get out the bad yayas? My former trainer always said it doesn't so much matter what you do, just that you do. Our bodies are designed for forward movement and get all cranky when we curl in. I wouldn't be surprised if grief is the ultimate reason to curl in.

I hope you find what works for you. Believe me, I'd carry your load for however long my shoulders would allow, and then a few days after that. I bet we all would. Even crankypants MgGee ;)

xoxoxoox
Erin

Rach said...

Yes, grief is chronic. It's with you always. It ebbs and flows, as you know, with some days easier than others, and then out of the blue a hard day hitting, but it's always there. Chronic.

Robyn Powell said...

Thanks so much for your blog.You are a comfort and a blessing to many....even those of us in far-off Australia. I have been thinking about "chronic grief" a lot recently. I have the great privelege to be an occasional contibutor to a new Australian blog. This is my most recent post.
http://www.deaconessministries.org.au/blog-webapp/not-teaching-cuddling

Lisa C said...

I think too many women just accept pain and deal with it day in and out. Now, men? They do groan and refuse to do something based on their pain levels. I often wonder if it's a dignity thing for us!

Shingles is an incredible pain in the ass. At my absolute most stressful time, I contracted it at 40 and few people believed it. I've never felt such pain.

I would suggest considering surgery on the frozen shoulder. You may require repair that PT isn't going to correct. My mother (who is quite young) finally succumbed to the surgery and 6 months later, she is pain free.

Grief never leaves. It might step behind you once in a while but it's a constant fellow who is more often beside your side than behind you.

Love, as always.

Sarah Reinhart said...

Oh, I do think grief can be/is chronic. Definitely. I'm sorry for all the wincing and pain Anna and I hope that orthopedist offers some strategies for relief. xo.

Geri said...

Beautifully written Anna. My experience (5 years out) is that the sadness I have from losing our son is a chronic condition. The grief losing my parents and other people I've loved never felt like it was chronic. This is different. I love life, laugh a lot, and certainly don't feel like I am just functioning anymore. But there will always be a sadness inside me that was not there before Nick died. My friends who have lost children say the same thing.

Steph said...

I am so sorry you are dealing with constant pain. Please forgive the unsolicited advice. You might want to check your vitamin B-12 levels. I started getting B-12 shots and it has helped. Wishing you love and relief from pain.

Anonymous said...

I had frozen shoulder--I tried all the stretching, cortisone shots,pt--it took a little over a year and has gradually thawed--sleeping with pillows supporting --well--everything was the only way I got any sleep.--and while sleep isn't a cure all, I can certainly face life better when I have had some rest.

Anonymous said...

Anna, I think your emotions are having a conversation with your physical body. your grieving is part of your whole body, the stress is all consuming, give into it and accept it as part of your journey

Shellie said...

No see'em's get very little sympathy. When someone has a brace, cast or cane, people can see "how" hurt they are. But ailments you can't see are often ignored by those we love.
I feel the same way Anna. Sometimes my back pain is excrutiating but I dont even get a "How's your back today?" even though I cannot even move without wincing in pain. Day 1 I get slight sympathy but day 2 on not even a mention. This is from really nice caring people who just dont feel what I feel and can't see that I am in constant pain. It is a fine line between wanting help and sympathy and being labeled a whiner. As for your friend with headaches, ask how she is feeling, offer to help if needed and be friends. That acknowledges her struggle without making it all about that. Hope your shoulder is better and I will try to remember to ask you if I comment in the future. :)

Saire said...

Anna, Your writing is beautiful, truthful and real. Although my journey is not the same I learn so much from you. Thank you

Alison said...

Anna, you are stronger than you know. I haven't even ever heard of you mentioning your pain (not enough to be noticeable), you're just a trooper.

As for the grief, know that I have an Anna Donaldson-sized hug reserved for you always.

Elaine Alguire said...

I do not know the scope of grief likes yours. I cannot since I have yet to lose anyone that close to me. (I should probably knock on wood right now, right?) But I have had chronic pain and I know what that's like and I think the comparison you make here is spot on.

My Mom's best friend passed away yesterday from cancer and all I could think about was how much her friends and family are going to miss her, just having the presence in their life, now replaced by loss. It's gotta be so hard. Just the thought of losing anyone I love that much is so hard for me to think about.

xoxo

Anonymous said...

My mom would hook her bra and step into it to get it on...it's an idea, hope you get relief and healing with your shoulder and back.

Heidi Cave said...

It is complicated. Grief, pain, loss, what-to-say, all of it. Just know that I'm with you and for you.

Jerry E Beuterbaugh said...

Surely this is a site well worth seeing.

Torey said...

I just read about someone using essential oils to heal shingles. I've never actually tried them, but it might be worth it to contact a Young Living or doTerra rep to see what they would recommend for your pain.

anymommy said...

I want to live across the street, so I can come over every morning and give you a grimace of sympathy before we drink coffee. But you'd probably get tired of me very, very quickly!

laura@imnotatrophywife.com said...

MY sister told me about the super comfy, padded bras (no clasps) at of all places TJ MAXX- looks like a sports bra but with less strength. they come in 2 packs! ha! I love the extra padding! Ask your pt about Rocktape too! it's the kinesiology tape! laura

Katherine A Rayne said...

Really REALLY lovely. !!