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Adrienne Dellwo

Being a Caretaker with Fibromyalgia or Chronic Fatigue Syndrome

By May 1, 2013

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When you have fibromyalgia or chronic fatigue syndrome, it's better to have someone taking care of you than relying on you. Of course, that's not always the position we're in.

As a mom, I do plenty of care taking. However, my husband is pretty good at taking care of me when I need it. A few weeks ago, we had a bit of a role reversal. It hasn't been easy.

He had to have surgery on a tendon in the wrist and thumb of his right hand. And yes, he's right handed. He couldn't drive. He couldn't cook. He couldn't hang laundry or load the dishwasher. He needed help showering and getting dressed. I needed to not only take care of him, but I needed to do some of the things he normally does around the house.

I tried. I really did. I succeeded a lot of the time, but I also had times when my body failed us both.

A couple of times, I was exhausted and couldn't stay awake any longer, and of course it was at inconvenient times. My left hip, where the arthritis is worst, also took me out of commission from time to time. He was left to take care of things he probably shouldn't have, like getting a meal together for him and the kids. He drove us to the doctor's appointment at which he was released to go back to work because he was in far better shape than I was that morning. Lucky for us both that he's a quick healer and is fairly competent with his left hand!

Now he's back and work and his hand's recovering well, but I'm sitting at home lethargic and achy. I have a hard time staying awake, and as much as I want to be productive, I just don't have the energy. Mentally, I'm sludge. To be honest, I'm really hoping that this all makes sense once I finish pulling it out of my brain by sheer force of will.

This all leaves me reminded of three things:

  1. Even though I'm a lot better than I used to be, I still have a long way to go;
  2. I'm incredibly lucky to have a husband who does so much to help me;
  3. I don't know how people with these illnesses manage to take care of new babies, special-needs children, or chronically ill loved ones, who need help indefinitely.

Have you had to become a care taker? Short-term or long-term? What has it done to you, and how have you managed to cope? Leave your comments below!

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Photo Jack Hollingsworth/Getty Images

May 1, 2013 at 10:28 pm
(1) Samantha says:

I can definitely relate, and I can tell you full time is no fun at all either!! Not sure how I’ve managed! Not only am I single parent of a very busy, athletic 11 year old, I had to take in my terminally ill father last summer. He was bedridden due to a healing hip that broke from a tumor that metastasized from his lungs, so I had to wait on him and his every need, help him bathe, keep urinals clean, and help him get to and from his bedside toilet. He had to have CONSTANT supervision,I couldn’t leave him unattended at all! Many days I just cried because he would be up all night with hallucinations and I didn’t get a fraction of the sleep I needed (not to mention sleeping on the couch was BRUTAL). I eventually had to hire an overnight nurse because I couldn’t keep functioning under those terms and my body couldn’t handle the couch anymore. Somehow I managed to take great care of him until he passed a couple months later. I truly think it’s because I just didn’t have a choice, no other option, and because I knew I didn’t have much longer with him, I had to give him my very best.

Now I’m almost 6 months pregnant and I’m BEYOND terrified!! The exhaustion is worse, as is my pain. I think this will be an even bigger test, and all I can do is PRAY that the Lord gives me enough strength to survive this too.

May 1, 2013 at 10:36 pm
(2) Cindy morris says:

Yes I take care of my elderly dementia mother who is 84 and has lived with me for 9 yrs! The pain and stress got to be too much when I worked, so I quit 3 yrs ago. I finally got help at home 1 yr ago so I could get a break 2 days a week! Sometimes I feel as bad as mom, it seems like I’ve been going down hill and I get burned out a lot, and I cry or not as nice or patient as could be but we get through it, and I just keep trying, hoping for ss for me and my husband is understanding and helps me! I get help some from my niece and me and my husband get away or go on dates when we can that helps too!

May 2, 2013 at 8:34 am
(3) frankie says:

I care for my son who has schizophrenia. I had a friend move in with me to help me out and she found out a year later that she has terminal cancer so I’m caring for her now too. A couple of years ago, I accidentally let my license expire so now, until we get a vehicle that will pass the inspection for me to take the driving test, I have to depend on my son to take us everywhere we need to go. That means he has to be able to be around people, so we wait until that’s possible. Everyone has to have separate meals cooked, I have Debbie on a special diet to help her combat cancer and my son will only eat baked meat, no soup, no stew, nothing ‘wet’. I clean when I’m able, even taking out the trash seems like a huge deal to my son, so no help there and Debbie’s too weak from the chemo most of the time. I have to make sure my son sees a doctor and therapist every three months so he can get his meds and I have to tell Debbie what to say to her doctor, because she doesn’t think about it. I too have to see a doctor and therapist every three months for meds and fill out paperwork so I can get my meds through PAP. Everyone has to have mountains of paperwork filled out by me and signed by them. I do all these things and more through the grace of God only and we all manage to laugh and be happy most days. My fibro fog provides most of the entertainment! I’ve cooked pizza with the cardboard still on the bottom, stood in line at Subway with a blank look on my face, trying to figure out the words for what I want with my son saying “Say American cheese, say it! A-MER-ICAN cheese!”, everyone is smiling at me and all I want is the ability to say Provolone. I’ve learned that hats are my friends because I don’t often have the strength left over to shower and we happened to live in an apartment with NO TUB! Thank God that He is running things around her or we’d all be lost!

May 2, 2013 at 10:50 am
(4) Sally Nolen says:

I became the walking dead, taking care of my disabled husband for almost nine years. Sick myself with an undiagnosed illness after having mononucleosis, social security denied my claim and I had to work. Finally, I left my huband. He committed sucide a month later. A year ago, Cleveland Clinic diagnosed me with a post viral syndrome, and I’m waiting for social security’s final reveiw. I’ve hired attorneys after getting another of its letters…”We think you have over-exaggerated your symptoms.” A good man is dead, because I didn’t have the support or energy to take care of him.

May 2, 2013 at 2:03 pm
(5) Penelope says:

It’s very tough – bad enough making decisions about what not to do for my own care, like not showering as frankie mentioned. But I also have to make decisions about what not to do for my son with a physical disability and what not to do for my aunt with dementia. Both my son and my aunt are appreciative of what I can do for them, which is great, but I know they get short-changed a lot of the time because I simply can’t do what they really need. My house looks like it was ransacked as ‘things’ always take second place to caring for living beings, which is sad as my kids are embarrassed to bring new friends home.

May 2, 2013 at 9:05 pm
(6) Abot Bensussen says:

We took care of my mother for her last ten years, she passed at 90. It was so painful for her to see me getting sicker. I only hope she can see how much better I’m doing now.

I couldn’t do half of the things I do now without my husband and dtr.’s support. He does the shopping and cooking, she contributes to our household and is primary dog walker. There are days I simply cannot do it, though I do try.

I know I’m very lucky, my other children help us out, too, but aging with fibro isn’t easy, hard to know what hurts the most, Sjogren’s? Fibro? being 72. We all do the best we can to manage our lives with so much need!

May 3, 2013 at 6:54 am
(7) Pamela Steadman says:

I just wish others knew of our pain and disappointments in life. My mother is 80 and she moved in with me about 10 years ago right before I was diagnosed with Fibro….to help me…..She is now in and out of the hospital with COPD and is now on oxygen. I admire her strength so much and only wish she could understand what I go through. My now ex-husband couldn’t handle the sickness so he left..lost job….lost my home and vehicle….I am on Social Security ….. lost friends because I got tired of hearing “You don’t look sick”….and so I stay home and take care of my mother who takes care of me. Now on the upside….I learned what is most important in life….MY FAMILY…..not material things ….. which is where I was in my marriage……lost everything but gained everything +………….My faith has gotten me through some of the lowest places I have been… I know there is a plan for me and all of us…..I don’t question what it is….I just know things happen for a reason ….. because of this…I was able to be with my youngest when she was diagnosed with sever depression and Bi-Polar, I was with my oldest when my first grandchild had to be airlifted after birth to MUSC and was in the hospital for 7 weeks….(doing wonderful now)….I was able to be with my son when they found out they had to do surgery on his unborn identical twins to try to save both….lost one but he is now his brothers guardian angel…… I would never have been able to do these things with my children and grandchildren if I had still been working and even through the exhaustion of these trials……I was there…. UNCONDITIONAL love with my family makes me move on….. Through this pain…..I am now a stronger person (just with pain)
Many prayers to you all…..

May 3, 2013 at 3:38 pm
(8) Linda Henegan says:

My husband broke his wrist 3 months ago and is still unable to drive. I have to drive him to school and back and everywhere . I feel as if I am living 2 peoples lives. i am shattered and have had a lot of body aches and neck pain from driving. However a year ago I became vegetarian and am so much better and my headaches are mostly gone. I don’t think the pre-veg Linda could have coped.

May 3, 2013 at 3:54 pm
(9) Lucy says:

At this point, I am really lucky. My husband is mostly healthy and he does all the cooking and most of the grocery shopping.

The down side is he is 77, 12 years older than I am. He has mild but worsening emphysema, has had mild mild heart attack requiring stents and has Parkinson’s disease.

So, I am in dread fear of the day that he needs more care. He huffs and puffs with the mildest exertion. the Parkinson’s is relatively stabel but will get worse.

He is also in denial about both the extent of his health problems as they are now as well as the long term prognosis. Since I was an ICU nurse for many years, I know all too well where things are headed.

I try but it is very hard sometimes to live in the moment and Carpe Diam.

May 3, 2013 at 4:42 pm
(10) baywatch says:

I am lucky to have a husband that can help with most things. He drives us to do errands and can pick up the slack on my worst weeks. We are both in our late 30′s and I’ve had fibro for 12 years. He knew when we met that I most likely wouldn’t have kids because I lack the ability to care for myself and the dogs sometimes, so I doubt I could handle a kid. But lately all our friends are having babies and my husband is feeling like he’s losing out on a big part of life. He’s now mentioning how he wants kids, even though I made it clear from the beginning that was not in my future.

I’ve thought a lot about it but am so worried I couldn’t take care of a baby, much less a toddler, active kid, teenager, etc for the rest of my life. And what if the baby has a disability? I am scared to take the a caretaker roll of mother and really feel for Samantha above.

Does anyone have thoughts on having children when you have fibro? Is it totally crazy?

May 3, 2013 at 8:04 pm
(11) Cindy says:

Reading all this comments is so depressing. Wow people go threw a lot. Some times I wonder how we do it. There is just no choice some times. Do it or die.
My Mom had cancer 8 years ago and hasn’t really been her self since. In December she got bells palsy, then broke her ankle really bad. She is unable to eat and is on a feeding tube, then my Step Father died. Then we moved her, to be closer to my sister. All with in about a month.
Thank god I have a sister who helps me with her. My sister and I both feel like we have lost our own lives. Even with two of us it is so overwhelming. I feel like I’m living her life, not mine.
I always fee like my body gives out on me when I need it the most. I woke up and had a my back was out. I went to the Dr. got an MRI and found out it’s a bulging disk.Just one more thing. Then the dog got hurt…
It just doesn’t seem to stop.
It seems like some people have it so much easier then others. I read these stories and I know that there are people out there that have it worse then I do.
We just have to take one day at a time, one moment some times and get threw. I wish you all the best, I wish for you all, love, strength, health and most of all hope.

May 3, 2013 at 9:49 pm
(12) Cynthia says:

Baywatch–I had my kid at 26, and it was the only time in my life when I didn’t feel awful! I hadn’t planned on having one, but I did, and functioned fairly well until she was about 10. Now she’s a Ph.D. candidate and getting married back where she went to school, and I can’t travel to be there, but we’re ok with it–we picked out the gown long-distance, and friends will stream the wedding…
She grew up with my limits and understands that fibromaniacs can’t function with a lot of drama. I sometimes get befuddled or too tired to make sense, but we’ve laughed a lot. The love you give a child is the most important thing–reading (started day 1) together, making a tent in the living room, doing little things together, stuff like that matters more than anything in the world. I learned so much from having her in my life, especially because I realised that I am not the centre of my world–she was the centre of my world:) as a baby and now she’s my world is better .

May 3, 2013 at 10:13 pm
(13) April says:

I have fibro, arthritis, ADD, and a bunch of other things. I had to take care of my mom when she had cancer, my dad whose passed on when he was schizophrenic, and now my son who has special needs not to mention my bf who is a huge momma’s boy and doesn’t really seem to know how to run a house or clean anything. It’s totally exhausting.

I pray every day that I make it thru the day. Sometimes I cry because I just wish God would let me go to sleep and never wake up because it’s too much to handle.
Now I am still battling soc security because they don’t want to give in and it’s been almost 4yrs since I first applied. Each year it’s a miracle that I still have a house and am not living on the street. If I didn’t have my bf to pay the rent and bills my son and I would be living in a cardboard box with no food.


May 4, 2013 at 2:01 am
(14) Teas Carol says:

My heart breaks for each of you and for what you’ve been thru and still
going thru, I can relate and definitely understand. I will keep y’all in my
prayers and send love, strength, hope, peace & courage & stamina.

My beloved husband recently died of a heart attack at 52 y/o, I take care of my elderly mother w/Alzheimer’s, had to move twice in 6 months & back into my flood damaged house. My son moved in w/us to help me but is depressed and it expresses as anger. He’s 24 and dropped out of college, quit his job, broke off w/fiance of 3 yrs…just a mess.

I’m on disability, Mother gets a small pension, I’ve lost my insurance
and waiting to get Medicare…it just never ends! I take it a moment at
a time and w/out GOD, I couldn’t do any of it…don’t know how I do it
other than that.

Losing my insurance and not on Medicare yet, I’m off many of my
main meds that keep me functioning at all. These past 6 months
I’ve thought of suicide often because I am in such terrible and un-
relenting pain (auto immunes & fibro) but I would never take my
life, just WISH I could!

Life is hard but just about impossible w/these conditions/diseases.
No one seems to care either, I have 3 siblings & long term friends,
all MIA during all these hardships.

Will pray for all of us that GOD blesses us & provides for our needs!

May 4, 2013 at 8:51 am
(15) Victoria says:

Well, my husband decided it was too much work and left me. Now I’m not sure how I’m going to support myself on just disability pay. What ever happened to in sickness and health? I am hopeful I’ll be able to work full time again some day, but according to the medical expert that is unlikely to happen.

May 4, 2013 at 2:54 pm
(16) Sandra says:

Fibromyalgia is so isolating. The pain I used to experience from it has lessened considerably but pain from osteoarthritis has replaced it. What is never-ending is fatigue. I’m 68, my husband is 64. He has had a recurrence of severe Rheumatoid Arthritis within the last 2 years. At the beginning of that I had bi-lateral hip replacement. Had to be done. He managed to take care of me after I returned home after 3 weeks. While I was taken care of I got so much better with energy but it took a tole on him. Now, I am so tired all of the time and his pain is increasing. We’ve been together for 30 years and have a good marriage. But, I have to do most of the driving, cooking. Have help once a week through Dept. of Aging in cleaning the house. Otherwise it would be a disaster. We are very low income and don’t have enough money to do both meds and food. We are trying to care-give each other and that is making each of us worse. We are so scared of what the future holds for us. Thank you, Adrienne, for this forum so we have a place to express our fears. You know, you experience what we all go through.

May 4, 2013 at 7:38 pm
(17) Budie says:

I have only had to take care of my husband a few times lately hernia surgery and cataract surgery. Thankfully not very long. The worst part for me was getting up to be at the hospital by 6:30. I just didn’t get undressed; never the less that is the worst part of my day. I couldn’t even drive to the hospital.
All the situations here sound so incredibly impossible. I guess you do what you have to; as much as you can.

May 5, 2013 at 5:37 am
(18) hotlyn says:

I feel so sorry for everyone who has written.. life sucks so much for people like us. I am sooo lucky , my 2nd husband of 10 years (i’m 61 he is 65) has been nothing but an absolute support through all my surgeries and illnesses. Poor thing when I met him his main aim was to go on the internet and buy every potion and vitamin and mineral he could find that would CURE FMS, RA, OA and depression!! Last year with cancer , surgery, chemo he finally gave in with that one. Now he spends time on internet finding things that will make my life a bit easier, BUT i live in fear everyday something will happen and he will get very ill or die. And I know I shoudn’t but truely, in my life that’s what happens..The few times he has been in hospital .. gall bladder surgery, kidney stones etc I have been able to keep it together do everything, be there in hospital as much as possible and then when he gets home I fall in a major hole that takes me months to dig my self out of again.
I had FMS for 10 years before I met him, so he was a brave man to take me on, soon as we moved in together I was dx with fast acting OA, and then 2 years ago RA. Sometimes I think it is just another day waiting for the next goddam thing to jump up and smack me down..
Regards Lynne

May 5, 2013 at 7:48 pm
(19) juli1961 says:

I was diagnosed with fibro in 2004 right after my son was killed in an accident. I lost a job and my housing in 2009. I moved in with a friend from my church and we clicked and got married a few months later. He knew before we got married about my fibro and knew he would be taking care of me. Well in 2011 he developed a blockage in his left leg, and to make a long story short, he lost his leg below the knee. I took care of him during the 6 months that this took place. He was amazed at how well I did. (so was I) There were several times during that six months that I called friends and family to help me. At least 4 times I took a day where I collapsed and stayed in bed. Now we work together taking care of each other.

May 6, 2013 at 11:47 am
(20) Paul DB says:

To be honest, this is really too scary to contemplate much further. I don’t know how I’d last more than a day, and then I’d be down for 2 or three more after that. Would life go on? Would I want it to?? Eek!

May 10, 2013 at 3:49 pm
(21) vicki says:

I have cared for my husband for 2 years now he has severe ptsd and regualy trys to take his life I also have 3 young children all under 9 and.2 under 5. I have to keep.going but often feel.i cant I have just had to have my husband admitted to a hospital because I can not cope much lomger. I have to do it even tho I am ok pain they are my.life x

May 11, 2013 at 6:06 pm
(22) Anne Long says:

I can certainly relate. I am taking care of a husband who is paralyzed in both arms and legs. He was still driving until about l8 months ago when we hadan automobile accident. He stopped driving, but has since been plagued with a series of physical and anxiety attacks. He demands almost 24 hour care.

Since then my son has been diagnosed with Parkingson’s disease. Add to my CFS, macular degeneration which has taken quite abit of my eyesight.

My advice? Have faith in God, and keep plugging.

Oh yes, did I mention that I am 86 years old?


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