Sometimes, just when you think things are going pretty well, life knocks you up side the head and throws things into chaos. Those of us with fibromyalgia and chronic fatigue syndrome probably have more experience with that than a lot of people, but it doesn't get much easier.
The past few weeks have been a brutal reminder of the toll emotional turmoil can take. My husband and I have been good friends with another couple for the past 11 years, and now they're getting a divorce. For the past two months, I've been supporting her as she made the decision to leave and then had to face him with it. I've been supporting him since she left, as he waited an agonizing three weeks for her to make the final decision that it was over.
The result? In spite of the fact that I've been doing really well, fibro-wise, my muscles are all knotted and spasming, I'm sleeping even worse than usual, and mentally and emotionally I feel like a wrung-out dish towel. I'm more forgetful than usual and have neglected things like getting a birthday present to my 8-year-old niece and checking on a relative who recently had a hip replaced.
It's like my world has gotten smaller and I can only focus on what's right in front of me. It reminds me of earlier in my illness, when I had no idea what was going on in the world around me and I really didn't function.
This is just something I'm going to have to deal with because I've made a conscious choice to continue helping my friends get through this ordeal. However, going forward, I have to make sure I set aside "me" time when I don't respond to emails, texts or a ringing phone. I need to take extra good care of myself so I don't continue to feel worse.
I will get through this. I know that because I went through the first few years of fibromyalgia in far worse shape than I'm in now. There were times back then when I said the same words as my friend whose wife just left him: How do I go on?
The answer I gave him - which is little solace right now but is the only real answer - is, "You just do."
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A sibling pair with a puzzling condition that made even walking a short distance an agony; a 20-year-old man with a rare respiratory ailment forcing him to live on a ventilator; a woman with a potentially fatal buildup of a protein in her muscles — all rare cases that were difficult to diagnose, let alone treat. I reported on the blog of Findrxonline about the disease and what used to counteract the pain is necessary to review it.
I totally understand. I went through a divorce with fibromyalgia several years ago and in the last year my workplace has been a horribly stressful place to work. People who choose to think I am lazy when I use FMLA time to come into work late due to my fibro/CFS/Narcolepsy. My boss is wonderful and understanding but but my coworkers are very judgmental and have wrecked havoc in my work life. So much so I am considering leaving. I have worked there 13 years. However I must keep the roof over our heads and food on our plates. Thankfully I have a wonderful husband that now lets me rest when I get home and is understanding. And you are correct…..You JUST DO GO ON> I have always told my mother……You do what you have to do.
There just isn’t much emotional energy left. The illnesses sop it all up. I need to rest most afternoons, in order to have an active morning. I have been sleeping well the last five years, with the miracle of Xyrem, and still, my energy is very “iffy”.
I’ve lost some friends over this issue, been afraid of leveling with them, that I just cannot drive over and visit. I don’t look sick, most of us don’t, and I couldn’t convince some people just how sick I felt/feel.
Just one symptom, IBS, could cause havoc with a social and work life, now add the exhaustion, the trouble following a conversation, well, it’s too much to handle. Just being with other people, relating, uses us up.
Adrienne,
I’m so sorry for what you are going through and how rough dealing with all the stress is on your body. We do just need to keep going on and wait for the good times to come again.
Thank you for continuing to put this blog together, I know it is work, but it is much appreciated.
Abot Bensussen,
I’ve heard many good things about xyrem, but how do you gget your insurance to pay for it? I’ve heard they will only pay if you have narcolepsy. After 5 years are you still waking rested and do you have any side affects from it?
Adrienne,
Sorry to hear you’ve been so stressed.
Your compassion for your friends comes through loud and clear, as does your strength and ability to “deal”. Just wanted to remind you to take your own advice and be extra gentle with yourself.
Thanks for sharing your journey with so many of us. I know your growing ability to find balance in your life, combined with your “tell it like it is” wisdom helps more people than you realize. Hope you get tons of support and rest while you’re sharing your limited energy with your friends.
Be well!
You blog post came at a good time for me. I’m currently staying with my parents to help out after my mother had a serious fall. I’ve been here for three days and she was released from the hospital yesterday. Because of alcoholism and other issues in the family, this has been an extremely difficult time physically and emotionally. Last night my sister (she has back issues) and I realized we are going to have to level with my parents about a plan for their care. They are well able to afford help, yet expect us to fly in from our homes in other states to take care of them when these things happen. I would love to see you address this issue in one of your columns. I woke up this morning feeling as if I have been beaten with a bat! Saying “no” to most people is easy when it comes to protecting my health. But I feel such a responsibility to relatives.
I’m having the exact same problems…..would love to hear more about taking care of aging parents when I can’t get out of bed. Or even remember to pick my mom up for her many dr appts.
Sorry you are forced by your caring heart to endure this situation. My family leans on me to support others and they do not understand that if I am having a few good hours, dealing with anothers nightmare is going to send me into a terrible situation. They think I am so strong and have great suggestions. I think if they could understand they would not put me in these situations . Dealing with attorneys, commercial tenants, IRS, ill relatives. They have children so they cannot deal with these issues. I would prefer to have 19 kids and counting than to spend another minute in FMS?CFS?LYME hell. I find myself resenting them. They have no idea what hell I go thru for being so kind and smart. Dream of moving to a foreign country to escape this situation. Friends don’t get it either. Oh! You dont want to come to the party/football tailgate etc. That means you dont like me. Maybe you could take a pain pill? I already did and cannot abuse the med as you have me booked for your line up of activities. Glad you like me but you have NO idea what you are asking me to do. I end up needing to lie back in my suv and then they come looking for me. What’s Up?!!!!!! I just read this and can tell I am resentful.
Feel the same way about my family and friends. They just don’t get sometimes that the pain never ends. And when you do go out if you overdue it to make them happy you pay and then mine say why did you do it! It can be exhausting. I have two kids 8,4, which makes it hard for me to not overdue. I didn’t have them to stay in bed, I had them to do the sports, school, playtime and more. And then I get accused of being a bad mom because I’m not everywhere! It’s frustrating. It doesn’t feel like they care! Life can change for anyone in a moment, I had mild fibro and didn’t even know it! But my family was hit by a drunk driver, which gave left me with back pain and muscle that has been chronic on top of the fibro. What I realized today is God loves you in anyway! People don’t get it, it takes a caring person to understand. My best friend has been through losts of trama so she understands as best she can, she says I really don’t know what you go through but I will never judge you. That’s the way we are together. May you find that friend, I can be there for you, I will say a prayer you feel better!
Adrienne – your post is so timely for me. I’ve been dealing with a lot of stress lately. I was diagnosed with Rheumatoid Arthritis and Sjohgrens disease a couple of weeks ago. Adding these two diagnoses to Fibro and CFS just threw me for a loop. I finally felt like I was getting a handle on my Fibro symptoms and was starting to feel like I could function fairly normally when several new symptoms popped up over the summer.
Then to add to it, my mom has chronic health issues that take an emotional toll. And my dad has been having issues with anxiety and alcoholism that have really come to a head in the past couple of weeks.
The emotional toll all of this has taken on me in addition to being sick with bronchitis has thrown me into one of the worst Fibro flares I have had in years and to add to the fun I’m also having my first RA flare.
I am really trying to learn how to deal with the emotions better, but I have also been hyper-sensitive and just don’t handle things like this very well. I am trying to take a step back and focus more on myself and taking time for me.
Thanks for taking the time on this blog. It really does help!!
God Bless you! I know the feelings and the body stress! You get to a point where life starts to feel the same and a simple stress can put you through the same as you felt when you first got sick! I wonder too all the time how will I get through this. I am going through quite a flare and it depresses me a lot because I have two kids and it feels like I miss so much time with them. I can’t get these years back, they are only 8, and 4. I pray to God everynight and I just keep putting up a fight. I can’t imagine what you go through with all the illiness. I will say a special prayer for you tonight! Take care of yourself and take care of your health. I understand the hypersensativity especially with everything you are going through! But you sound very strong and I believe all of us with this disease will get through! With God anything is possible, hopefully a cure!
Try going through foreclosure and having to move while having fibro. Talk about stress and pain, especially knowing it was my fault since I got sick and could no longer work. Talk about emotions and fibro. I have never been more exhusted or in so much pain in all myl life. My own divorce was not easywithout having fibro then I cant emaginine that now, but this tops it all, sinc eI still have to deal with the X.
Stacy,
I am like you, divorced, about to loose my house and recently cannot work anymore, actually, my FMLA was used up and my employer (large healthcare system) cleared out my cubicle after 8 years like I never existed. They wanted me out, I was told that I should have told them I was sick at the interview and they never would have hired me. talked to many attorneys’ and apparently there is no law against saying mean things.cannot sue because FMLA is used up & in FLA, it is a “right to work state”. They go on making their BIG bucks and I am now as screwed as I could be. How do you handle it? No friends (everyone thinks I’m making it up, I look so normal) and so depressed……I feel your pain……
Having to take care of my mother who has middle-stage Alzheimers disease, a full-time job, and FMS at the same time is taking a big toll on my emotional and physical health. Besides, I agree with all of you, people don’t understand how it feels, and the worst thing is that I don’t know what else to do to explain this pain and everything that comes with it. I think that the topic of “taking care of relatives when we have FMS” would be a great one. After reading some of the comments posted on this matter I think many of us have to deal with the same problem.
I am Stacy and Ivette combined. Separated from my soon-to-be ex-husband, sole caregiver for my Alzheimer’s-afflicted mom, stressful job. I say this not to one-up anyone, but to ask if anyone has had an experience similar to mine yesterday. I got progressively sleepier throughout the day until I got home, went straight to bed and slept for 14 hours.
Is this total body shutdown a fibro-like reaction to extreme stress?
Life has been emotional for me. Facing decisions to separate from my Husband, work stress, a preteen daughter and health getting worse. I don’t know how I can deal with the holidays.
I can attest to stress of a trauma in your life making symptoms worse. I was FINALLY diagnosed with FMS about a year ago. Had good days and bad days and was coping fairly well. January 12, 2011 I found my mom dead in her home. Since that day my pain has been unbearable some days. I continued to work after taking off almost 2 weeks after her death. My pain continued to get worse and worse. I’m doing better now after some new meds but I’m convinced that the stress of finding her the way I did and dealing with her death have made my disease worse.
I so get this situation! The drain of supporting friends in crisis is hard on everyone and doubly so for someone with Fibromyalgia.
My life has been on stressful situation after another for the last six years or so and I have noticed the direct correlation between my symptom flares and a stressful situation. Most recently I found I need to find new accommodation and that is nearly impossible with my low income and health problems. To make matters worse it is not something I can blog about because my friend who has caused this event reads my blog so I have lost my outlet too!
Still we need to care about others, we need to do what we can.
Thanks for the post.
emotional mess mess with your whole body and i have been dealing with it for a while now with a stressful job> I have been trying to find a way to tune out those around me that cause this. The tension in my body was so bad by saturday I could hardly walk but I stil made myself move at one point i even found myself praying to God about suicide how crazy is that? I’m praying and telling God that I havent talked to him about this but i hurt so bad and then i made it thru another day Thank You God
This is one of the most difficult things about being chronically ill and a huge part of the illnesses being fatigue and extensive chronic pain. My feelings are close to the surface after a busier day like when I go out to do errands or have a lot of phone calls or paper work. On days like that it’s not unusual for me to become weepy / frustrated especially if I’ve had 2 busier days in a row. I’m in so much pain and so tired I can’t even think properly never mind sit up straight. Yes, this is definitely one of the difficult things about being chronically ill.
Dear Adrienne & others suffering,
I,too, know what it’s like to feel like crap every day & every nite to the point of nausea. THEN…..add extra trauma to your life & you want to call it quits. There are many times when the Fibro hits so hard, IF I have to leave home for anything,(I no longer drive), I do have to use a wheel-chair to get around in stores. People who don’t need chairs treat those of us who do, like we’re just IN THE WAY! The last time this happened I wanted to get home as fast as I could & get in bed! Not one single person in the store even bothered to ask if I needed help in the isles or to get inside the store…..then,out. This store doesn’t have an automated opener,unfortunately. I just kept getting dirty looks. My husband noticed it,too.
Wonder if anyone else is faced with this mess? Are you in a wheel-chair alot & , if so, how are you treated by the “normals”?? Would love to know.
And my in-laws will never “get it” if they live to be 100. They’ll say, “But, don’t you feel better today? Why doesn’t that pill work for you? It worked wonderfully with John!” And I just, a few minutes ago, had to TRY to explain why I couldn’t go vote yesterday because my body couldn’t take the PAIN of getting to the car….INto the car….back OUT of the car…..wheeled over a ka-thumpy parking lot to the building where we vote…….wheeled BACK OUT…….getting back INto said car……back OUT……well, I’m sure you get the pattern. And, I couldn’t receive an absentee ballot soon enough because I CANNOT PREDICT HOW CRAPPY I’M GOING TO FEEL FROM ONE LOUSY DAY TO THE NEXT!!! I think that infuriates me more than anything else where this CRAP is concerned. Like, I PLAN my worse days?! I hardly think so!
Adrienne…….I wish you well. Get over the “hump” like you always do, & know you sure aren’t alone on this Fibro-ride.
Gentle Fibro (((hugs))) from eaglehaslanded