Hello, dear girl. No need to apologize that this thread has come up again. We deal with guilt so much that it needs to be talked about often. We really need to talk about this and work through it together. I have two kids and it was particularly difficult for me to overcome feelings of guilt when they were young. Young kids need so much. And never think that being a stay at home mom is any easier than working. It really isn't. Sometimes, work was easier than being home. Not that I recommend that you not stay home. I think it is lovely that you can be with him. The benefits of him having such direct care by a parent are proven. I am one of those people who will ask for help one time and if the person doesn't respond, I just try to do it myself. This has caused me to do stupid things like try to trim my bushes with manual clippers. I was sick for days over that. I'm not saying I am really good at this, but you have to ask your hubby for help. I am learning that asking for help is not like me saying, "me first." It's more like saying, "me too." I count too and I need help. You need help, sweetie. In our society, we value movement over stillness. Part of your journey will be to find the treasure of stillness, of rest. Many blessings. Post anytime.

Many thanks for your kind and helpful words triunfadora. I guess guilt always hovers around somewhere with this condition and I can see that I have a lot of learning ahead of me. I have always been very independent, and, if I am honest, quite stubborn! Asking for help is not going to be easy.
Thank you for replying, this seems a lovely group :o)

It is a lovely group. I am so glad I joined. I was so lonely and the people in this group have been so helpful and accepting. I hope you find that same acceptance that I did. It's a good thing that you are stubborn. You'll need that on this journey. Every once in a while, you may feel like poking CFS right in the eye by resisting the urge to give into despair. Your stubbornness will help you to do just that. Smiles.

Hello there, Soft and Gentle. I LOVE your user name. I feel a release of tension just seeing those words. We often need to be reminded to be soft and gentle with ourselves and our loved ones.
I am also very new to this group. I have been to many doctors, but have not yet been formally diagnosed with CFS.
I can certainly emphasize with your feelings of guilt. You did not ask for this condition and accepting the limitations is very hard. I have a suggestion about asking for help, especially from your husband. If he is anything like mine, he is willing to help but has no clue. If I were asked to wash the dishes, I would wash the dishes, wipe off the table, the counters and the stove, dry the dishes, put the dishes away in the cupboard, drain the dishwater, wipe out the sink and hang up the dish cloth. If someone asked me to wash the dishes and then listed the steps like I just did, I would be royally offended. But a man is different.at least mine is. It works better for us if tasks are spelled out in detail. Then he is more confident and feels good about helping. Of course, I always let him know how grateful I am for the help.
What has worked for me is making a list of what I wish to accomplish that day. I can do light housework for 30 to 40 minutes at a time and then will do something sedentary for an hour. I can keep that up til 3:30 or 4:00 pm. I am not much good for anything after that! I cross things off the list as I get them done- which feels good - and ask for help with the rest. You, however, also have the challenge (and privilege) of a 4-year-old boy in your life.
I am sure Triunfedora is right in saying that we need to learn to treasure stillness. Guilt is a useless waste of energy. Spend it on your son, instead.
Good Luck to you!

I can certainly identify with what you're saying. I also have always been independent and stubborn. Asking for help feels like imposing on others and exposing my weakness at the same time. Dealing with the guilty feelings took a long time and isn't completely done, since they still pop up from time to time.

But what I want to tell you is: if you need to rest, do it! If your condition is at the milder end, you want to keep it there. Pushing through only makes things worse. It can lead to you crashing and in my experience, each time you crash, it's harder to recover. I was at the milder end twenty years ago, but now I'm on a disability pension because of my CFS. That is partly due to the fact that I pushed through sometimes when I should have rested. (A larger part is due to other health complications and stress from circumstances beyond my control, but that's another story.)

Don't feel guilty that you need to rest. You wouldn't expect a person with a broken leg to feel guilty for having to use crutches, or a person with asthma to feel guilty for having to use an inhaler. This is our condition, and this is what we need to do to manage it.

Ah, the guilt. How I wish we didn't have to go through that all of the time. I would like to be able to tell you that all you have to do is accept that you are ill, take care of yourself & the guilt will go away. No, we are human & we have to deal with each & every phase of the guilt. I don't have it much anymore but I still have my days, usually having to do with my family & not being the sister/mother/aunt/etc. that I used to be. I am not the grandma I thought I would be either but I will say, after years of sticking to my guns, my family has finally got it. I no longer have a spotless home but I am okay with that, that was a big hurdle to get over.

Take care of yourself first, then you will be able to take care of your
4 yr old & husband. I know this feels wrong but believe me it is what you need to do. I spend my energy on my family & everything else in priority. I have very few priorities anymore. I gave up my gardens & yard work, I quit my job & went on disability, I cook & freeze for dinners when I am well enough, etc. I take one day at a time. If I feel bad today, I take care of myself & rest. You will find your way through this, it is overwhelming at first. Gentle hugs, Denise

Hi everyone, and thanks for taking the time to reply. It is so good to hear from you all and realise that I am not alone in this! Sometimes it does feel that way as no-one else seems to really get this illness.
I do try to understand the feelings of others - after all, I look fine!

Eweneek, I am glad you like my name - it took a while to choose, but now I am glad I took my time choosing it and that it helps you :)
My husband is indeed exactly like yours! It does frustrate me sometimes, especially when I am on a down day. I wonder why they cannot think the same way as us?!
Guilt is indeed a waste of energy - I must remember that and ask for help instead!

cmiat, I was sorry to read of the worsening of your condition. I guess we never really know what is going to happen do we? Asking for help does indeed feel like I am imposing, and being weak, this is something I obviously need to deal with.
I loved your last paragraph - I guess I had never really thought about it like that!

Denise, thank you for your words, one day at a time is sound advice.

Thank you everyone, enjoy a restful day today x

Welcome SoftandGentle,

I'm male and Eweneek's comments that her husband is willing to help but has no clue is absolutely spot on. You wonder why we cannot think the same way as you? Really? We're GUYS we're oblivious. We think wash the dishes means JUST THAT wash the dishes. You really do need to spell it out and draw us a picture. And letting us know how grateful you are for the help is the frosting on our day.

Cmiat is on the money too if you need to rest, do it! Pushing through really does only make your inevitable crash harder, deeper and longer, and take a greater toll on your whole system. NEVER begrudge yourself rest or sleep they are your medicine. You would never feel guilty about taking insulin if you were diabetic. YOU DIDN'T DO ANYTHING WRONG You're just sick and you have to take care of yourself or you're no good to your son, your husband or anyone else.

This group is wonderful for me and, I suspect, all of us, because we do all UNDERSTAND this illness. There are no hairy eyeballs here. If my illness comes up, I tend to say I have a chronic illness that severely limits my physical, mental and emotional energy rather than mentioning CFS. The first seems to be easy for people to accept and even sympathize with, but chronic fatigue seems to sound like the setup for a joke to people I'm tired all the time; I must have it too.

I haven't tried this, but I think I will next time I speak with a doubter: Imagine you have a really, REALLY busy day, so you come home just utterly spent, exhausted. You feel like a puppy that's been running through the fields *all *day. You fall into bed, get a good night's sleep and you're pretty much ready to go when you wake up.
Now imagine that instead, you go to bed, sleep 12 hours and wake up feeling every bit as exhausted as when you went to bed. You're logy and groggy all day, you can't think, concentrate or remember, you sometimes stumble for no reason. You wake up the next day, and it's the same. And the next day, and the next day, and the next day. THAT'S CFS.

Welcome.

I just wanted to reply to your post. I can really relate to what you are feeling, as I also have a small toddler. I actually have help and it is still hard on me. I find that parents without chronic fatigue need physical and mental breaks, so don't feel guilty! I know it's easier said than done. It's helped me to think that by taking the rest I need, I will be a better mother in the long run. It's a priority to take care of yourself.. I had someone suggest thinking of it as a part-time (or even full time) job. I am working on the guilt myself, but I am also trying not to be too hard on myself for something that I can't control. Wishing you all the best :)

Ah the guilt. For me it's about not making money. It's changed a lot in our lives, we may need to sell this house when my husband retires as we won't be able to make the payments. We can't take vacations (well I mean whatever a vacation is with CFS). We pinch pennies.
If I were working, none of that would be true. But I did nothing to contribute to my getting this disease, and I in fact worked years longer than I should have.
This is how we handle things. I have greatly relaxed my housekeeping and when we moved here I downsized my stuff by about 40%. There is little to dust, etc. I do dishes once a day, in the evening after dinner while sitting in my rolling office chair or on my walker. If I can't, then I rinse them and they sit. If it's going to be a rough day, we use paper plates. Laundry is done twice a week when I am up to it (there are only 2 of us). Hubby brings it in the laundry area and I manage to move it between machines and he moves it back to my bed to fold. It may take me an hour but so what?
Groceries. This I do a bit at a time if I feel like I want to get out of the house. The store is just 4 miles away so I get my electric cart there and get 2 bags of groceries and have my walker at the bottom of my ramp at home and put them on it and bring them in. In the winter, we go together and he lugs them all in at once, 6 or 7 bags (showoff).
I don't iron unless there is a wedding or funeral and even then I try not to.
The grandkids clean up after themselves in their playroom because they understand Gramma is tired so often, they are 10,9 and 7.
I trade work with my husband sometimes. He needs paperwork done for his job. So I do his paperwork on the computer in bed and he does "my" vacuuming. Vacuuming is hard! We have two vacuums, one is a 6 lb battery one for me and he uses the heavy duty one once a week.
The thing about male partners and the Mars/Venus thing is that they want to help but mine has made it clear he doesn't want to do it wrong or forget so I have made up a list of what certain chores entail for him.
Do laundry: put laundry in machine, add detergent and borax, start maching on regular wash, medium/cold unless I say otherwise.
Clean kitchen after dinner: All dishes washed or in the dishwasher, pans get hand washed; leftover food in the trash or the refrigerator if there is enough for another meal; clean sink, clean counters, check if trash needs emptying, quick broom the floor in the prep area.
Etc, etc.
It helps him to have a list to go by as he is just not intuitive. I mean, if I was in his workspace in the basement I would not know where to find all his tools, I can't really expect him to know where all mine go if he doesn't work in the kitchen often. So if something ends up left in the dishrack I iknow he doesn't have a clue where it is kept.
As far as contributing to your son's playgroup... do it if you feel up to it but really you need your energy at home.
I have no guilt about asking my husband to help because if he is not up to it, he'll say so and it will just sit til the next day.
This is a disease that requires we be mellow about things like cleaning, cooking, and even things like sex. It isn't going to be like it was, it just isn't. So you find a new normal and save all your energy to take care of your child. Because you will be home with him when he gets back from school in the afternoons you will develop a very close relationship and he will no doubt become your little helper very soon.
Ok, I'm tired... so hugs from New Hampshire!

I get the guilt thing all the time. I have to keep reminding myself when I see all the things that aren't getting done....

IT'S NOT MY FAULT!

Welcome Soft and Gentle,
I appreciate your user name as well. It reminds me to let go of guilt and remain soft and gentle to myself at all times. I truly understand those feelings of unwarranted guilt.
I raised my son as a single parent, working in New York City in Finance and trading, which is a demanding business of one's energy and quick thinking. I loved it but had to leave on Disability due to CFS!

I ent through a plethora of doctors in the early 90s' to find out what the heck was wrong withy body, for it wouldn't cooperate with what I intended for it! Much less was known of CFS then as it is now and CFS continues to Baffle the medical and all of Society. I dealt with guilt and denial for years. I was finally diagnosed in 1994.

Everyone has given you much positive wisdom so far. I can only underscore the Importance of Rest and being Gentle with yourself dear. My adult son doesn't understand me to date and I don't get to see him or my three grandsons often and feel very alone in this CFS except when I am here.

May you let go of guilt, for it's a useless emotion, that can take you down farther and you can practice transforming the guilt into Hope and gratitude as I recently was blessed to transform my despair of breast cancer treatments through the WONDERFUL PEOPLES' SUPPORT right here

Give yourself TLC for its much needed for us dealing with this Invisible Disease. Yes, Invisible is part of why most don't understand including ourselves at times.

BLESSINGS & LOVE

Nina1959 NAILS it:
The thing about male partners and the Mars/Venus thing is that they want to help but mine has made it clear he doesn't want to do it wrong or forget...
PRECISELY. We know by now that doing it wrong upsets you and the last thing we want is to cause you upset. We want to make you HAPPY.
Do laundry: put laundry in machine, add detergent and borax, start maching on regular wash, medium/cold unless I say otherwise.
Clean kitchen after dinner: All dishes washed or in the dishwasher, pans get hand washed; leftover food in the trash or the refrigerator if there is enough for another meal; clean sink, clean counters, check if trash needs emptying, quick broom the floor in the prep area.
It helps him to have a list to go by as he is just not intuitive.:
No, it's not that we're not intuitive, it's that we can't read your minds and don't know how you want it done if you don't tell us IN DETAIL. :-) These examples are *excellent, having them written down is even better because we can't remember like you do. Just a fact.
Hugs to All.

what stood out to me in your original post was "Guilty asking husband...when I have the time to do them myself" the time. TIME. We are so used to thinking of time as the most valuable commodity, but with CFS, it's not the time, it's the energy/health. This requires a shift in our assumptions, a shift in our basic thinking. Time is not very important. Far and above "time", is our health, our energy. Sure, if we have the time, we can push and get things done. It takes a long time to realise that pushing only drains our 'energy account' more and this will come back to bite. And we will have to pay the price sooner or later. But all this is easier said than done. I have had this for over 30 years and still have to reevaluate every stinkin' day. I have lots of time. could do LOTS. But I have to spend LOTS of time resting.
It takes time (in the longitudinal sense) to learn to balance it all, not to balance it perfectly, just balance the best you can.
Hugs to you. Linda

Very well said, Linda
perhaps we should invent a clock that tells time in energy units....