My partner is very sick with CFS, anyone else a caregiver for CFS? -

My partner is very sick with CFS, anyone else a caregiver for CFS?


It's not just being chronically fatigued, that describes me. I know all the medical facts/treatments/research, etc. But I don't know anyone taking care of someone with CFS, are you?

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Struggling thanks, digger. I weed sprayed the front lawn and a little of the back a few days ago and it gave me exhaustion and pain the next day and longer. Crawling out of that hole now. I keep trying to extend my boundaries. Just found out that people with fibro have low blood levels of certain amino acids - the BCAA - branched chain amino acids valine, leucine and isoleucine (commonly sold in body building shops as BCAAs), and also phenyl alanine. I am going to try them. My daughter is using phenyl alanine and says it helps her energy levels. They have to do with muscle metabolism. I will let you know if they help. A regular, very low dose of antidepressant helps me with the pain, and also Robaxin (methocarbamol) when it gets worse. The exhaustion is the worst part for me, but I have found in the past I can slowly increase my activity levels as long as I rest enough and keep moving a little. The past month with the relapse has been largely in bed, but doing better now. Progress is slow. I have found it very important to deal with any psychological issues too, as stress makes it all worse. I had a friend who was in a wheel chair with CFS/FM and I urged her to go to counselling for her parental/family issues. She did and was successful in not needing the wheel chair any more. Low dose naltrexone sounds interesting. Co Q10 and carnitine can be helpful as well with energy levels.

Digger it must be very hard to be "alone" in this so to speak. As Richard says many people in their 60s are caregiving. I am in my late 70s and as well as having CFS/FM, I am POA financial and medical for my mentally ill mother who is 103. That causes me a lot of stress and, as she is pretty healthy physically, it does not look like my caregiving (albeit at a distance) days will be over soon. She is in a facility thankfully and well looked. Do take care of you,
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I am so sorry, time went by and although I have checked in her occasionally I never saw this section or your very helpful and thoughtful suggestions. We are still together, she is no better and at times much worse. Some of your suggestions I have stumbled on and implemented, I wish I had read your responses earlier. Richard, I will do some research, we are blessed to have a family dr who cares, will do research and is open to trying almost anything, she's very open-minded.

I came on here today to close my account, so glad I found this first, thanks. Emjo23, I hope you are well, I understand about energy allotment, down time and exhaustion for a person with CFIDS but my partner doesn't look at all well and after 33 years together with a glance I can rate her energy level sometimes better than her. But even with visual confirmation of her condition it is hard for me to face another day with not only having to do everything but being expected to be understanding too is just too much to ask. Some days.
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I find part of my job is to educate sig other about what I can and can't do at different times. Right now I am starting to recover from a major relapse which means I can do a few tasks a day without making myself worse. It must be difficult for him to see me looking well yet able to do less than normal. It is kind of like do you want food or fertilizer - I can go to the grocery store or the garden shop but not both. Frustrating for both of us.
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I've been caring for my wife with CFIDS for the four years since I retired. I do much of the same as you, including burning wood! I used to do all the typical "guy" things outdoors (lawn, snow removal, etc) and now do most of the other things as well (food prep, housekeeping, shopping, etc). I'm fortunate to be retired because this has become a full time job. If you are still working I can imagine that you are stressed by the care-taking.

The other replies have covered a lot of good advice, so I won't repeat it, other than to say that "poor food choices" including processed food and sugar laden foods are much like tobacco or alcohol addiction. It will only change when the person gets to the point that they WANT it to change. Sadly, we can't make our spouse's change. A good friend helped me to see that years ago and I still have to revisit the idea now and again. I know that our mate's choices can impact caregivers and make our jobs harder. I see my wife make some things a priority that are not necessarily the same as mine would be, and this often leaves me more to do. However, with CFIDS the person has a limited capacity so spending her limited energy is more precious to her. Still, this can feel like a trap at times, I know that.

Have you and her done any research online on Low Dose Naltrexone? This drug used off label had been beneficial for a lot of people with CFIDS and other immunity based disorders. Simply put, it is a legacy drug originally used to treat opioid addicts, which in low dose, taken in the evening, temporarily blocks the opioid receptors in the brain which causes an increase in opioid receptors and endorphins the next day. Endorphins are the body's own pain reliever. It also appears to boost Immunity. There is much information about it at lowdosenaltrexone website and well worth looking at. My wife takes it and has gone from using stair lifts all the time, to only on some days, and not even all the time on those days. We also have a scooter now sitting in the garage and largely unused.

Another point not covered by others may be the way in which your faith can help you to overcome some of the negative feelings and thoughts you might have as you try to cope. I don't know your background, but there are many scriptural passages that offer some good advice on all relationships, and especially among mates. There is some useful and direct help for couples online. .jw.en/bible-teachings/family/couples-parents/ You may find the subjects "When a Spouse has Special Needs" and "Managing Conflict in Marriage" or "Solving Problems in Marriage" to be helpful.

Keep yourself healthy, she needs you, and rejoice too in the fact that you CAN do all the things you do. Solomon, who was regarded to be very wise wrote long ago: "Two are better than one because they have a good reward for their hard work. For if one of them falls, the other can help his partner up. But what will happen to the one who falls with no one to help him up?" I've found among our also aging friends [most in their 60's] almost all have one person caring for the other, sometime the wife, sometimes the husband, but perhaps this is the purpose of the marriage bond - we are there for good and bad. This tells me you are an honorable and loving person. Not a bad identity!

Best to you,

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When it comes to relationships, caregiving is a whole new animal, sorry for the cliche, but a horse of a different color. For the both of you, it isn't just changing gears, its climbing into a completely different vehicle.

You have asked more than once if anyone else is taking care of the CFS patient. But it's really care taking itself that's at issue, not the illness. To be sure, different illnesses do require different caretaking approaches. But in your situation, its more that she NEEDS to receive care and it seems to me that you are asking about the WHY of her needing care. In a way, expecting things to be closer to how they WERE than how they ARE. You can't necessarily expect her to be logical or rational, even if she is an RN, if at the same time you acknowledge that she has some cognitive issues.

I have a friend who was married for about 2 years and was in a terrible automobile accident with her husband. He had some physical injuries which healed but she had head injuries that caused some brain damage, although she was perfectly functional. 3 years later, he divorced her because he said she was "different".

IMO, you should get her to go for a complete neuro-psychiatric evaluation so you both know what you're dealing with. Then the two of you can discuss the future. Until you know her capacity, you can't possibly predictor level of cooperation. Ultimately, you may make a commitment to stick it out or you may find that you have to make a unilateral decision to walk away.

It is admirable that you have attempted to remain. However you are there under stressful circumstances. I like to remember the following: one definition of insanity is doing the same thing and expecting a different result. If you keep trying to do what you been doing, and she keeps doing what she's been doing, the only thing left of your relationship will be bitterness and resentment. Neither one of you need that level of deterioration in your lives.
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My partner does have cognitive issues from ME and also from a past head injury. That's what is killing me...she knows, she is a nurse for G-d's sake. Someone asked about me crying in front of her. Part of my new less talking is an attempt to stop crying every time I engage with her. She is depressed and on anti-depressants and going to counseling. I can just imagine what those sessions sound like! I am concerned lately about her driving because she spaces out. When I just headed that way recently talking she started yelling at me not to go there. Regarding using "that tone", I can't figure out how she claims I use that tone ot have disrespectful undertones when I'm barely talking. Don't look at me with that tone.
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What about an online support group for CFS?
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Digger, your situation sucks. It's also a common type of experience. Our "loved ones" refuse to take their pills, eat and drink things that will hurt them and cause us trouble, and refuse to change their Depends. They cause us more work, don't recognize how much we do for them, and call us a nag and say we use "that tone" - a direct quote - when trying to care for them.

All the suggestions are good. Just find a healthy nutritional supplement based on chocolate and butter! It sounds like you are working on detachment, and wisely keeping your mouth shut rather than creating more problems. What would happen if you did cry in front of her? Do you think she could understand how upsetting this is for you?

I especially like Jeanne's suggestion, and am actually trying it with my husband. He and I have been in couple's counselling on and off since before we married. What I'm pushing for right now is getting him to express gratitude more, and to say "please" more. I accept the fact that people with dementia can't learn much. He's in early to mid stage, so I'm hoping he can make small behavioral changes now, to give me evidence that he does appreciate my help. I want to have that evidence to "feed" my love for him, now, while he is still himself.

Your partner doesn't have cognitive issues, but I bet she's in pain, and that makes a person crabby. As a recently retired person, I bet she has lost stimulation and self-esteem and a social network. She is probably depressed. Is that one of the issues she is "noncompliant" about? Is she in therapy or a support group? Is she on medication? Would she consider couples counselling? For me, the therapist's office is a safe place where I can say what I need to say, knowing the therapist is there as a safety net. A good therapist doesn't take sides. S/he identifies what each partner wants, and their fears, and helps the partners to understand each other better. It's no magic bullet, but it is a safety net for a relationship that's under a lot of stress. Best wishes to you both.
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It is very hard to watch someone you love do self-destructive things. You want the best for them, and it is painful when they don't seem to be willing to work toward the best for themselves. We hear about that a lot on this site, as parents spend their money unwisely or won't take their medications,etc.

In this case there is the double pain that your partner's self-destructive behavior also has an impact on you. While she is glued to the couch for three days you have to take on all the work that she formerly helped you with. Bad for her; bad for you.

I'm sure you know that she didn't get this disease deliberately. If there was nothing she could do about it I assume your would take on caring for her without any more complaining than any of us do when we are venting. Right? But the fact that, in your mind, she could be doing something about this and she isn't that is really wearing on you. If she won't do it for her own sake, why won't she do it for you?!

I don't know. I don't know if your expectations are realistic. I don't know how hard it is for her to muster the required discipline to be compliant. I don't know how much the "brain fog" prevents her from behaving responsibly. But I can empathize with your frustration.

Perhaps you should consider couples counseling. Let an objective, trained outsider ask you questions and guide your thinking toward ways to resolve this. It would be a terrible thing to lose a meaningful relationship over something neither of you can help.

Good luck to both of you as you struggle with this.
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It's not a question of I told you so, wish it was that easy because I could stop that. When she is tired because of her illness having to caretake and do all of the work could be tolerable. When it is disregarding that it will mean a lot more work for me and happens repeatedly I can't help but feel disrespected. Something I am accused of often. I feel like she just won't listen and turns everything around.

You are right about the daily arguments, it has to stop. For the last three days I have said little to avoid arguing and to get myself in control a bit. Two hours ago she accused me of having not talked to her because she ate the second bag of chocolate. Really, my life is a bit more than a bag of chocolate and she was present for the last two extra miserable weeks so really...about her and a bag of chocolate? How about because I couldn't talk without either being nasty or crying. Seemed better to me to just keep interactions minimal, not angry not talking, just minimal. Which yes, welcome back to. This is the place someone said I could whine on right? Sorry.

There are no support groups within Maine for ME/CFS. Our primary Dr teleconferences with her Dr in NJ.

Maybe the princess needs me to take her shopping without having to be nagged into it or tacking it on to a Dr visit because we are out anyways. Part of this is the winter isolation I always feel but she used to working through. Closing our house and going away for 4 weeks will be a different kind of work and some respite.
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