Any caregivers with fibromyalgia and chronic fatigue?

Suzanne50, I'm sorry that your illness has intensified over the last year, having fibro is hard and unpredictable to manage at times. I know dealing with the added stress probably isn't helping, but it is unavoidable when caring and worrying about your loved ones health and well-being.

I have fibromyalgia and degenerative disc disease and migranes. Flare ups come without warning and can make the simplest of chores unbearable. Sometimes it is very hard to balance your own life and daily activities even on a good day, besides adding in caring for a loved one on top of it.

I try my best to get good uninterrupted sleep when possible to function more efficiently so that my pain and brain fog isn't intensified, so I make sleep my priority.
Since having to run two households I keep notebooks of daily notes for my to do lists, and I have two calendars to manage appointments and bills. I know for me my mind will not shut off at night unless I keep my schedule in order and I stay on top of it. Keeping that stress down helps my sleep schedule alot.
Excersise(stretching), meditation, and deep breathing exercises are things I do to try to keep my pain levels in check on stressful days. Somedays I'm successful, but sometimes not so much. I go to a pain management dr. that tries to give me techniques so that I can avoid extra meds for break thru pain. It took along time but together we found a combination of both exercise and meds that finally helped me live a more normal life with less pain. You might want to read up on certain foods that can make flare ups worse and some that might help elevate. Certain supplements help others but I did not have success.
I am lucky to have a understanding and wonderful husband to do the heavy lifting to prevent me from overdoing or pushing myself to do more than I should. Listen to your body and say NO at times to chores or it will have to wait until another time. Sometimes it is what is needed to protect yourself from overdoing it and making youself feel worse. If you don't set limits you will not be there to help tomorrow.

I know these ideas will not work for everyone but I hope you find relief in some of the answers you might hear from some of us.

Be well

Is there any chance they have a Health department in your town? I used to work for the one in my old town. You could hire someone for a couple of hours (has to be a minimum of two hours to make it worth their while) to take care of your loved one and do light housekeeping, etc, which could free you up to take care of yourself for a couple hours. You pay them at the end of their time and it never used to be an exorbitant amount. Some people would hire home health aide every week for one day for couple of hours or so.

Take care of yourself, and do for your mom what and when you can. See if you can get her meds changed if she is screaming at you all the time. If it isn"t enough, someone will have to help. A family member or outsider. (professional)

Take care of yourself. No reason an agency can't have two clients, one your love and one YOU. You can also have multiple agencies ones for your LO and others hired by you for you. Discuss your needs and plans up-front.

My heart and prayers go to you and your loved one. My mom is "recovering" from a stroke, my husband is getting ready for 6th back surgery and has A-fib and has had 4 TIA's....I have MS. My biggest help so far has been going to first physical therapy and now the gym 3 times a week.It took me 12 years to figure this out but what a difference...you have to take care of you first and I was not strong enough to follow through with exercise at home, somehow the discipline of being expected at the gym, having to schedule around it on my calendar has changed my life. Second is find yourself a doctor you can talk to and will help you work with your symptoms, not just give you what works for everyone else. Third lesson I have learned recently is you can only do what your mom wants and will let you do. For day to day care, I do what she needs and wants and have stopped asking, suggesting, trying to explain. If I can't meet a particular need/request I will tell her and so far she manages to find another solution...I know this will change but I was wasting so much emotional energy stressing out about why won't she just try this or do that but I forgot she is 81 and I am her baby...why would I know more than her? Thanks to everyone on this site I realize things might get a whole lot tuffer but my husband keeps fighting everyday and has rehabbed from one operation after another and inspires me. Sorry so long of a post, your question really hit home. All the best to you.

All I've got now is a severe cold, with aches and pains, and I have to take care of myself. My husband has had to fend for himself, but the hunger instincts kick in, and he does feed himself. I rally to give him his meds, but basically I am either in bed or being a zombie in front of the t.v. Take care of yourself, hire some help, and if you cannot, have your mother placed because your illnesses don't resolve in 7 - 10 days.

I am so sorry you are going through this. I have been doing the same I am recovering from a right hip replacement and need the left hip replaced. I was trying to pack my dads house so that we could move him to Oregon to be with us and manage his care and after the fourth day I had a wall and had to stay in bed the entire day. Luckily he can do a little bit for himself like fix toast and cereal for breakfast and he really doesn't do anything else except watch TV or go outside and smoke but it is hard because I know he won't eat dinner unless there is something he can just pull from the refrigerator and heat up, so I did make sure I had easy foods and healthy snacks for him. I got pre cut watermelon and sliced apples with caramel and then pre cut up vegetables and a box of salad so he can throw together very easily and I had barbecued a steak and sliced it very thin and put it in separate packets so that he can have a well balanced meal. That way I can rest and he is still being said and cared for. We also have a caregiver and a home health nurse once a week

I meant hit a wall and being fed. I should know better than to do the talk and text thing.

My wife and I look after her mom. My wife has severe neurological problems that limit her mobility and the Docs are still trying to get to the bottom of it. I'm a physically disabled vet. Basically, we're trying to run 2 households (MiL lives next door) on 3 limited incomes. At times, it can be pretty demanding to keep up. I've been doing most of the cooking for all 3 of us for almost a year now. Housecleaning, I take care of the kitchen and vacuum the houses when I get a chance. Plus any maintenance work that is within my abilities.

We make do with what we can

I feel for you. It's tough enough being a caregiver, let alone having your own issues. I've been caring for my 77 yr old mother who has COPD and is on oxygen 24/7. I have been through stage 2 breast cancer with chemo and radiation. I live with residual effects from this along with chronic pain. Thankfully she moved next door to me 4 years ago and I don't have to drive 50 minutes to care for her anymore. I have 3 sisters one of which is out of the picture all together and 2 who rarely help out. Mom won't except outside help. She never drove or made friends. She doesn't bother me for a lot, but I do her shopping, banking, take her to doctors, give her dinner every night, do small task around her house and am her company every night for at least an hour. I have learned to live with doing everything and stopped asking, groveling and begging for help from my sister's because it was making me sicker. Do you have siblings? How far does your mother live from you?

A caregiver must care for themselves or they won't be able to care for anyone else. Contact your local Area Agency on Aging or Bureau of Senior Services, ask about in home programs that will assist you in caring for your mom. they should also have caregiver services such as respite and caregiver support.
I have fibro & arthritis, rest is important. Eating healthy is also important as is exercise. Walking is good and can be done at your own pace. See if your insurance covers physical therapy, they can show you some things you can do at home to help ease pain and increase flexibility. You find what works for you, what ever that balance may be. I care for my dad, when he was sick I slept when he slept, ate when he ate etc. You can enlist family members to assist as well, even if it's running to the market to pick up bread and milk. Everything someone does-helps. Find time to look at a magazine or read a chapter in a book. Make some time for yourself even if it's 15 minutes at a time. Good luck.

I was diagnosed with Rheumatoid Disease in May 2011, a few months after my mom passed. The signs were there since I was 50, but testing wasn't complete enough previous times, I guess.

My mother had Rheumatoid for years & was bedridden at home for almost three years before she passed. She was also bipolar & refused virtually all medication except acetaminophen & senna laxatives. She was often angry with dad and me, then a visiting NP prescribed Excelon patches which could be applied without her knowledge. What a diff during those last five months, the ones I was here full time for her & my dad.

At the age of 68 I still provide virtually sole care for my father in his home. One sibling periodically will bring some food for variety & homemade quality. Another lives in the south & helps when she visits, but that's not often. Four others are hostile & have caused untold problems for my dad & me, so he isn't too interested in their visits. One of them was told not to return. Legal pursuits have been in progress , costing him thousands to date with no cooperation from that one. Another's child stole in excess of $11,000 from him & now blames him to avoid remaining restitution of over $6,000.

I am divorced & have two sons locally, both with many challenges of their own. They help whenever they are able, but that's not often.

I handle all - house, yard, and snow shoveling except when it's too deep for me to manage.

Dad is a pack rat & won't let me eliminate many of the items yet. The house is large & pretty well filled, but not a safety hazard. Many rooms are storage only, so he isn't at risk trying to move through them. I am slowly clearing what I can, including donating what little I have left from my past life.

Dad is not one to allow outside help, but he is having more severe mobility problems, so that's likely to change. He's almost 98.

I can oversee help when he allows it, and persist in reminding him my hands, wrists, and feet can only do so much. No washer repairs, etc any more... :-)

As his POA, Trustee, and intended Executrix I also manage his financial & legal matters, including his legal pursuits.

The ideas and feedback from others here are quite helpful & comforting.

My complaints are 2 knees that I really need to have replaced, bulging discs in my back, 2 arthritic shoulders that I've had rotator cuff surgery on twice and a neck that has a mind of it's own. Some days it's fine, others I can hardly turn. I was running every day for dad. A ride, the food store, the bank etc. Finally I told him that on Monday, Wednesday and Friday I'm not available, I have therapy on my knees. I don't, but I need that time for myself. I'm widowed and have nobody but me to do what needs to be done in my own home. I spoke to his doctor and mine and both agreed that in order to do the best for him, I had to take care of myself too. I'm sure as his dementia progresses, I will have to have someone in to care for him those 3 days, but remember, you're no help to anyone if you're ill yourself. Even a couple of hours away from the situation will make a big difference. Plus......I'm moving in May. I'll be about 20 miles from him, where I"m 5 now, but I can't find anything affordable in this area and living with him is out of the question. I ordered Phillips Lifeline for him just yesterday. That will help ease my mind too. Little steps to take care of you! Best of luck!

God bless all of you for doing what you do. I am not nearly as sick as many of you, but do have type 2 diabetes uncontrolled. My 87 year old mother took care of my dad, also diabetic, so she understands. It is still a challenge to eat properly, exercise and care for yourself. Like many of you, my sibling is useless. I think the best advice here is to see what services your city or county can offer, so that you can get relief. It is not selfish to care for yourself and don't let anyone else guilt you. Caregiving is very hard and we can only do so much before burnout sets in. Walking is my favorite way to deal with this. Gets rid of the cobwebs! Hugs and prayers to all.

Better get some help!!! My mom is now 92. I've been her sole caregiver for years. She refuses any help to me. Not even an aide to help bathe her or a sitter. I have migraines, degenerative joint disease in every joint and discoid lupus. I never have a day off. She has dementia and the sundowners that goes with it.

So take care of yourself. Believe me you will regret it if you don't. Get help for both of you. God bless!!

Hi Suzanne50: I have an 86 yr old dad I'm taking care of long distance. I do have help in my ex sister in law so that is a plus. She lives with dad and makes breakfast, lunch and dinner most days and she does some housework too.
I have RA although it is mild but I haven't been taking care of myself (fell of my healthy diet) and so now my joints are back to hurting. My 16 yr old son had type 1 diabetes and so we have to watch over him too. Dad has dementia and needs a knee replacement but his drinking is preventing that. So, he sits on the couch and watches tv and drinks his beer. He is becoming more inactive which I am sure will not help his health.

So, all the above answers are good. Take care of yourself, try to get help for the most stressful things and know that you are doing your best. I am a people pleasing perfectionist and have had to learn to let a lot of things just go and not fret over them. Maybe when this season of life is over then I can be a better housekeeper or fix up the house again. Until then it can wait. God Bless.

Dear Suzie, I feel you, girl. I have those same issues & am currently on chemo too. There are some things even those w/ dementia understand. My Dad is not severe yet & can still change his diaper & shower himself. I found that the more I did for him , the more demanding he became. He also would hold me responsible for "His lack of care." What I mean by the latter, is for example, he wants me to drive him around and has his meds called in to Walmart. But, has them sent to a different Walmart (On purpose, I believe), so when we arrive, they are not there. He will then, go in the store & get something he needs instead of going to the other Walmart immediately when the transportation is offered. I still have a child in school & may make mention that I have to pick him up in 45 minutes or so. He will refuse to let me call & transfer the meds to the Walmart where we are & refuse to go to the other one. Saying, No. We'll go tomorrow. Guess what happens the next day? We get to the other Walmart, & he switched them! "I don't know why they keep screwing up," he'll say, "We'll just go tomorrow." Again, he refuses to let me handle it my way & insists on doing things "his" way. When I tell him, "I can't tomorrow, Dad." He says, "I'll get your brother to take me." If he can't go the next day, he tells everyone we know that now, he's out of meds & has no one to take him to pick them up! Everyone wants to know why I am so mean! UGH! So you see just one detail of care-giving so time-consuming, that a person can literally consume every minute of the day w/ the endless tasks at hand & in my case, often never achieving many of my goals w/ Dad, because of the tail-chasing time I would spend. I just had to stop it all and say, "NO." That's it. I t told my Dad & my family & friends this: " I have had an these chronic illnesses for many years. My Health is getting worse. I am taking this time for a few months, a year, however long it may take, to get well. This is my time for it & this is what I'm doing with it. After that, I will be able to work full-time again, travel, move away, ..... "(Examples of my goals after I am well I given here). I also let everyone know that I love my family & I know they wish me well and that I will not apologize for getting better. You know what happened next? I'm doing it now & getting better! My siblings are taking up the slack (Or the bulk of his care, I should say), & everyone is doing great. I)Decide what you need to do to get well 2) Decide what you need to accomplish that goal 3) Formulate a plan 4)Put that plan into action 5) Make a list of goals for when you are well. It's amazing all of the wonderful goals & dreams you can think of when you start to dare to think you will still have a life ahead of you and ask yourself what you would like to do with it! (Big grin on my face). Go for it!

Mom and Dad in their own home. Mom blind, Dad early dementia. At 85 they are both in good health otherwise. They are not demanding and are always nice and respectful They don't drive so I take them out everyday to the market or differing medical appointments. Each morning is the same. I drive over and upon entering the unlocked house Dad asks me if the door was open so I could get in. (sometimes he asks me what I was doing in the basement?????). I make sure they have good food to eat and that their finances are in order. Mom dusts and Dad vacuumes then I clean the bathrooms, kitchen, cabinets, windows etc....

My Wife and I sold our home to move into an expensive apartment to be within walking distance of their condo. (My wife works full time and is a pure angle with my parents. As a note I am also the guardian of my mentally retarded older brother.

Me personally:
Stage 3 Emphysema (24 Hr. O2)
Chronic Pancreatitis
Diabetes
Ongoing Skin Cancer
Partially Amputated foot
Fybromyalgia
IBS
Chronic Insomnia
Hypertension
Hyperlipidemia
Manic Depression
Chronic Lower Back Pain
Alcoholic (Non-Drinking)
I won't go into all the medications I take for these conditions and diseases. I will say that it is my choice to help my parents. A good number of days it is tough to get out of bed and face the day Usually it is like the movie Groundhog Day where Bill Murrey wakes each morning to the same eventually boring or frustrating day. Now some days are wonderful. I wake up with no pain and feel I can conquer the world, these are the days that I cherish being with my parents. Nothing they say or do frustrates or irritates me. Over the years I have found that taking my medications as directed, getting a good sleep, and having a wonderful Wife to vent with make me able to help my parents. Thank you for letting me vent a little bit.

Al...

It's really an issue! I believe I read somewhere that caregivers tend to face physical issues more than other people because we neglect our own health. I've got my stuff to deal with too (back issues) and I have put it off for four years now due to my time commitments and just mental bandwidth. Unfortunately it got worse while I was neglecting myself, which led me to gain a lot of weight, which led to worse physical problems. I'm slowly getting back on track. Wishing everyone well.

The answer is simple - you do the best you can bearing in mind that if you yourself become so sick that you can't take care of your loved one at all, then you are doing that person a dis-service by noting trying to care for your own needs now. I know this is easier said than done but it's not rocket science. I have my own health issues - high blood pressure, a brain aneurism, recurrent dizziness and headaches and at 65 am becoming tired after physical exertion. At the same time I have my 88 year old mum who has dementia and is immobile because of strokes and arthritis so she's sofa-ridden. I moved her in with me almost nine years ago because I could see how difficult things would become if I continued to have to move in between my house and hers, and that was a very wise decision even though it has its downsides. However, I found myself gradually feeling trapped both physically and emotionally and after much counselling and advice from many others who had experienced a similar existence I realised that there were two needs in the house - personal care needs in respect of my mum, and my care needs in respect of my own need to rest and get away. So, my local authority budget (am in UK) is divided into two portions, one for mum's personal care (washing, dressing, etc) and one to allow me to get out of the house and take a holiday. This has been happening for the past 18 months and I feel much more able to cope - problem comes when I get a crashing headache with dizziness and have no alternative but to lie down until it passes. There's no solution to this, mum just has to be on her own until I'm well again, but seeking proper help to give me time off helps me to keep these headaches to a minimum so that the times when I have to go to bed and be 'off duty' are not so frequent. Good luck

I also have fibro, as well as some other issues. The key is trying to get good restorative sleep. Yeah, I know, good luck with that! Also, don't overdo any one day, or you'll pay for it the next. I was having a much harder time managing everything than I am now, but then my husband retired, so now he helps me out a LOT. One of the things that he does for me is the shopping. I have a really hard time doing that - partly because of the fibro, partly because of my bad hips. But if there are things that you have a hard time doing, and you can get someone to help you out, go for it! It has been so much easier on me since he retired! We're poorer, but happier, I think. Good luck!

You've been given some very good responses to your question. I'd like to add to this as I too have my own physical limitations. I have Fibro, Chronic pain, neuropathy, autoimmune diseases, etc. Long list of medical issues. First as everyone has stressed take care of yourself. If not, you will risk flares. On days that I cannot get moving well or am having more than usual issues, I slow it all down. Everything is slowed down to a crawl unless it's an emergency. I have an extra cheap cell phone for just my Mother to call and I tell her if I am trying to get rest not to call unless it's an emergency. That way I don't have to deal with listening to the other phone to see who's calling. I tell friends I'm not available and please call another day. I make sure my Mom is set up that day and if there's not easy/fast food, then I call and order something (pizza, sandwiches, soup, salad).
If there is something that must be done then I reserve the energy for that only and then set the day to a crawl.

I've put all my Mothers bills on auto pay through the bank which does not cost anything extra and give me piece of mind in knowing they'll be paid on time. One less thing to worry about. I try to pay my bills once or twice a month to not worry about those. My Mom highlight of the day is checking the mail. So I let her but she was calling every time telling me it was something that could not wait. She cannot tell the difference in junk mail or an immediately needed taken care of bill. So now I set up twice a week 1/2 hour to take care of anything of that nature. Which usually isn't needed due to the auto pay. Every now and then something will get missed and come to the house.

Also for maintenance and outside yard work, if I cannot handle it, then I've been told to get people from daily labor as it's cheaper, however I'm afraid to do this so I usually just wait until I am able or hire a neighborhood teenager. If all else fails, then I wait until family/friends come along and ask for assistance.

I hope some of this helps. Stay positive my friend. :)

Suzanne50, I have several autoimmune diseases including lupus and UC. I've been my mother's soul caregiver for 7 years now. I can tell you one thing - get respite help NOW! Ths situation does not get easier. As you know, stress is a huge factor in these illnesses and caring for someone else is incredibly stressful. Contact your local Area Agency on Aging to help you find respite care. If you get sick, who is going to care for your mom?

Please forgive the immediate repost, but I forgot to add, since shopping is a big deal anymore, I have begun ordering from a program we have. You simply order and once a month pick up the food. I order for the whole month for myself and my Mother. Then for other things that might be needed such as ketchup, mayo, etc., I hit the Dollar Store, in and out quick or the local farmer's market when I'm running another errand. I don't miss going and dragging groceries from the store. In our area there is One Harvest program it is open to all regardless of monthly income. I'm sure if you do a google search you will find something in your area.
Blessing to you.

You can't be a good caregiver if you're not taking care of yourself and your health issues, which are clearly being impacted by your role as caregiver. You can't help your Mom if you collapse or something worse. As much as you might hate the idea, there comes a time when you have to think seriously about placing a loved one where they can get care and it won't literally kill you. When I started getting palpitations -- which eventually led into Afib -- I knew the stress was getting to me and that I could not only no longer be an effective caregiver, but that my own health was being severely compromised. My relative got better care in a facility than I could give. Not a good situation for anyone but sometimes it's the only real solution. Best of luck!

BLESS YOU and all of us with our own struggles... PLUS being a primary caregiver to a sick/aging/elderly parent... Can you imagine adding to this mix, your/my MS and the autoimmune disease MCTD (Mixed Connective Tissue).. AND a 94 1/2 year old mother who is also a "borderline personality disorder"/narcissist...? WOW! Am I tired? You bet I am. Am I thankful for a group of good folks like YOU... who care to read these messages and commiserate, who offer suggestions and ideas from your personal experience... with kindness and compassion? YOU BET I DO! I know you do too. Hugs to all... and no... pat... answers... XOXO

Suzanne50...Just remember that "to care for another who once cared for you is one of the highest honors." You are surely loved and appreciated more than you realize.

I also have fibromyalgia, Chronic Fatigue, Scoliosis, Bone Spurs, Arthritis, Tendonitis, etc. .... I am old 46 but am feeling much older. I care for my dad who will be 90 next month, my mom passed away before Christmas a year ago. I guess I don't have answers, but I am taking a measure of comfort knowing I am not alone!! (Misery loves company?!) lol. Sorry, wouldn't want to wish this on anyone. Hope you get feeling better!

Oops! I just re-read what I wrote. I have never been good at proof reading... at least not BEFORE I hit send!! :( lol. I meant to say, I am ONLY 46, but feel much older.... Not old 46. Although I guess now that I think about it, that would make me an old 46, huh!

Thank you for asking this question! I've read all the posts and you obviously hit on something that needs to be addressed. So many of you have horrific situations much worse than mine. All I can say is your courage in the face of your own illnesses is worthy of a medal! I am 64 years old and I have battled/managed ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for 20 years. It is a poorly understood, very real illness that took me out of the workforce. I am ambulatory but I am on disability. I have been my mother's caregiver since 2007 when my father died. She lives with us and is now 87. I am exhausted beyond belief. I was flat-out in bed for two weeks starting on Christmas Day from a bug (viral or bacterial- no way to know for sure). My mother came down with pneumonia at the same time but thankfully, she is recovering at home. By the the way, 100% sure she got pneumonia at her doctor's office where there was an outbreak. She refused to wear her antimicrobial mask. (Available on Amazon and in drugstores). Anyway,
I was not able to care for her when I was sick so my partner was doing double-duty, coming home early from work, etc. It was stressful and she has health issues too. Apparently, here in California, Medicare will only cover respite care for caregivers of family members with Alzheimers. Hiring home help is very expensive! If anyone has any tips on how to get financial help for home caregivers in California... I would love to know. Thanks again for the post and for "listening." I hope everyone feels better soon!