he doesnt understand my fatigue is REAL
AnonymousMay 20, 2009 at 10:57 am
I having some issues with my husband. Not issues really…just not sure he’s understanding me.
I work full time. When I get off work, I pick up Connor and go home. I immediately start preparing things for the next day..make his lunch, go thru his papers, start dinner. We also play a little bit in between all that. We go outside and I plant flowers or water them…it’s constant rush rush rush and I do not go home and sit right down. Hubby gets home about 2 hours after I do and then we eat dinner. After that, I get Connor in the shower or I do some more chores, cleaning, laundry , etc. My house is huge and takes a few days to clean and dust the whole thing…especially without help. Bedtime is usually about 9p and asleep by 10. Two nights of the week, I have tv time at 8p.
Some nights, Connor has baseball and I do all this plus go to his game and play Team Mom. No big deal…just hang out in the dug out and help keep the kids orderly. I enjoy this.
However,this means more to do and get ready for…faster.
I push myself…I wont not play with my son or be there for his games or play together in the water hose…when I say I push myself….I push to the limit…just about every day.
When you say rest…I always say, oh how nice it would be to do that.
I dont think, in my life, with my surroundings and family…that I can get the rest that CIDP requires.
So, what do I do ?
I am so tired. All the time. I constantly run until shower time at night. I think my husband thinks since I get home earlier, I do nothing and shouldnt be tired. He knows what I do…but it doesnt “click”.
He always says he’d go in early and get home early and I could go in to work later and stay later. But, I gaurantee you…he would NOT have the chores done and dinner ready, like I do.
I’m not saying I’m perfect…some nights he eats leftovers for two or three days…
I told him about this being tired and he wants me to go get a physical in case something else is wrong. He said I need to eat better and get more exercise.
And, yes, I agree with that. I dont eat alot of fruits and veggies and my exercise is just all the running around I do as a normal Mom.
How do I find the time to do this ??????? Make the time I guess. How do you push yourself to ride the stationary bike when you’re flat out exhausted ?
I really really really struggle every morning to get up. But, I do…and I go to work and start all over again.
He needs to eat better and exercise more, too. He cant find the time…funny how he thinks I should be able to.
He does NOT understand that it’s not just my diet that’s making me tired.
I get up at 430-5a and my day begins. I’m to the point that I’m too tired to make meals like I used to. I make fast stuff…and I’ll eat cereal.
I dont do the fast food restaurants…just fast meals like chicken on the skillet made with olive oil or whatever I can make fast without alot of work.
He also misses my “neck and shoulder rubs”…he has tight muscles like I do and I cant rub him like I used to. He told me this and said not to take it wrong, but, I do. Of course I do…I take it to my heart…and it breaks.
I’m so tired of not having a Dr that will help me get better. I HATE THIS.
thanks for listening.
AnonymousMay 20, 2009 at 12:42 pm
Has your husband read articles related to CIDP/GBS? Perhaps you can print some of the articles from this forum for him to read and maybe it will give him a better understanding.
Just reading off your laundry list of duties made me tired. 🙂 I’m exhausted by the end of a workday and I only have to take care of myself.
Please, please try to share actual articles with him about CIDP and the subsequent tiredness that may occur. You cannot afford a relapse.
I wish I could offer more than words and prayers, but that’s all I have for now.
AnonymousMay 20, 2009 at 2:13 pm
Sometimes I leave the site up on the computer at home and he’s read a few things. He seems to understand alot but just not enough. I know he worries about me and probably just wants to make for sure that there’s not something else wrong. As for myself tho, I just dont want to go to the dr for a physical…b/c it isnt anything else.
When I cook for them, my husband and Connor and my stepdaughter (on Wed and ev other weekend)- I try to make nutricious as I can. Connor always gets a veggie and fruit…if it’s juice or applesauce even. I dont like most of the stuff I cook so I’ll eat cereal or skip dinner b/c I had a bigger lunch. He doesnt like when I do that. Trust me…I dont NEED to eat so much…it’s not like I’m super thin or anything. I dont like many veggies.
He worries…I understand. I just wish he knew that sometimes I’m going to be tired regardless of what I eat or drink or how much exercise I’m getting.
thank you for your kind words.
AnonymousMay 20, 2009 at 2:42 pm
Stacey! I got up at 5 this morning and left by 7 just so I could take my mother to the doctors office. We went there and then to the drug store, then to the post office and then she wanted breakfast and we went to Waffle House and got breatfast. Stopped by the produce stand and then went to Belk Tylers! Fed my fathers dog after getting my mom home and unloaded my truck and out the produce away. Then I landed in my recliner to soon hit the couch. After reading your posting, I now know the couch sounds fantastic.
Stacey! I had 3 children to care for when I was at my worst with lupus. I remember all to well the bad times it was like. I used to buy stuff for the grill and let my husband be the chef a few nights a week. You may have to somewhere during you time frame find an hour or two a day just to sit back on the couch and rest. Even if it means Conner watching a DVD movie where you can shut those eyes and get rest! I had to do it with my children alot.
Rooms I don’t use I clean then up and shut the door and only clean them once a month.
I do what I can do and what don’t get done I don’t worry about it until the next day. Maybe perhaps getting a housekeeper to come in 2 times a month just to give you a break from that! And yes you are over pushing. Get the hubby to help you on the weekends getting the house cleaned. Tell him you could use some help because your fatigued all the time. And I do agee about printing some info for him to read. I feel for you for I have seen those days!
After getting home today from walking alot. I feel like laying down now and sleeping for 2 days! Conner is old enough now too to maybe help you with some chores. Giving him allowanace money if he does a good job helping you. If not in later years you are going to end up having two men in your house expecting you to do all the work around there with no help.
For years being sick as I was, I always was stuck cutting our grass and raking the leaves in our yard. Moved down to NC and then was stuck cutting my mom’s grass and then my yard again while my husband sat inside watching TV and my son playing video games. My mom broke her foot and had to come live with me 3 months. Here I was going to her house and cutting grass. Came home one weekend after cutting her grass and walked in all red in the face staggering like a drunk and went outside to cut my grass. She looked at the two grown men sitting around doing nothing and sailed in on both of them. LOL! Told them both off! Next thing I know my husband and son were both outside telling me to get off the lawn mower and go inside and get some rest. They have been cuttting the grass ever since! I am glad too for I thought it was going to kill me doing it all! Stacey! Your trying to hard dear! You really are! It will catch up with you! Everything you said in your posting is making you sound like you want to be normal again and trying so hard to be that way. But! After reading your posting! There are people I know that are normal and don’t do half the stuff you do! Alot of women that work come home with take out dinners. You may have to give up a few things just so you can get some rest in between! But you are doing to much! Good luck Stacie! Hugs
AnonymousMay 20, 2009 at 6:48 pm
You are one of the many women that put family and home first and never make time for yourself. I was like that before I got GBS this January. Suddenly my husband had to take over everything. Watching him stress over all the work, dinners, shopping, cleaning, etc. made me realize what a rat race I was in when I did those things. We decided some things will just not get done the same way or as often. If the furniture is dusty , it isn’t the end of the world. You need to lighten the load before you get sicker. Then you can just tell your husband you need time for yourself and take it. Make yourself the priority and fit everything else around you. A heart to heart with hubby about the way you feel and the rest you need would hopefully be sufficient. Please take care of yourself, life is too short.
AnonymousMay 21, 2009 at 10:16 am
I read your post and was tired!
It’s important to undertand that nerves only heal when we sleep. Being constantly fatigued is a building block to a severe crash where you won’t be able to do much of anything.
I have been dealing with chronic illness since I was a child and CIDP for abt 4 yrs. I have a wonderful understanding and trainable husband who has grown tremedously over the years. We found times when going to counseling together really helped us to understand each person’s perspective and fears regarding my health and it’s effect on our family.
Other things we have found that help:
We all say “please” and “thank-you” frequently to one another throughout each day, for everyday things like: working hard, picking something up and putting it away, putting dishes in the dishwasher, etc
Hubby and son bring dirty laundry down to the basement. I will bring it back up clean one load at a time, if I am strong enough, but on weaks days the others carry and I say “please and thank you”!
We have a place where clean laundry lives until it is folded or worn. When my girls were home, we used the living room couch, as we lived mostly using the family room. Now we use the girls bedroom since they are grown and only visit.
We use the cell phone to share chores and split up lists so that the person nearest a location can do shopping or pick up in that area.
When my children were younger, we would have “private time” usually abt 20 minutes. The children would have to do a quiet activity on thier beds. I frequently set a portable timer which I geave to the kids so they wouldn’t be asking when time was up. I would then sit in a recliner, and close my eyes. I would often be asleep in seconds and feel refreshed after my catnap.
We did hire someone to clean the house every other week. It was money well spent. It also kept us all more accountable to “pick up for the cleaning person” and took some of the stress off of me to be nagging or cleaning up after others. If my children did not have their rooms ready they were grounded the following saturday until they cleaned dusted and vacuumed thier own room, as a penality for wasting money… there was not reduced cleaning fee.
That’s what I can think of right now. I just started my IVIG for this week, and my brain is loosing it’s focus.
I hope others share what has worked for their families, and we all learn some new hints.
May 21, 2009 at 4:21 pm
As a mom of 3 little ones and one on the way, I have no advice but I do empathize. It’s hard being the caregiver when you are exhausted as soon as you wake up. I often say, “I’ll sleep when I’m dead” because that truly will be the only time I take for myself;)
I love my life and my family but the two are a lot. I’ve learned to have the older girls help where they can and live with the fact that it wasn’t done how I would do it, LOL! I also downsized the house which really made a difference. When we bought this 5 years ago, I only looked at ranch-style homes and I heavily weighed in how far I would have to carry groceries from the car to the kitchen. God was looking after us and we found this home that belonged to someone with MS – handle bars in the shower, front steps were removed and a ramp put in, etc. It changed our lives!! (our previous home was older and ALL stairs).
Keep putting one foot in front of the other! I haven’t found time in my day for this thing called rest but I know someday the home will be empty of little ones and I will reflect back that we did a lot together…while resting of course.:D
Connor and your hubby are lucky to have a mom who wants to be a mom. So many seem to forget what is important and the time you spend in the dugout WILL be remembered when Connor is older. Great Job!!
AnonymousMay 21, 2009 at 8:41 pm
What you need the most is a reassuring hug and some TLC. You are trying to be super mom….Me Too! I had 4 kids and everyone expected me to just keep doing things like I did before GBS. Unfortunately, I bought in and now as I age, I am paying the piper.
All I can tell you, is you know yourself best. I don’t think any one of us could really understand how someone else feels. My mom and I had a discussion today about someone who has an autoimmune disorder. She things this person just needs to not sleep so much. The disorder the person has leaves them bone weary as you and I both know about. I am not sure about you, but for me it is not about being sleepy tired, but rather physical exhaustion. How do we explain that to others? I am not convinced you can.
As some one else said, there are days when I can do so much and then there are days where I feel like a limp noodle. This shift alone makes it hard for my family to get what is going on…”you did it yesterday…why not today?”
I have no answers for you other than to keep talking to your hubby. As long as he sees you doing tonnes, he will expect tonnes. Do what you can. It is not about quantity but rather quality! Make the moments with Connor and your hubby count and make them quality, not quantity.
Wishing you the best always…
AnonymousMay 22, 2009 at 10:28 am
It’s amazing to me that all of you are different, yet you all understand.
That’s what I love about this forum.
I think you’ve all given great advice and I appreciate it.
I wont even say what I’ve done that last few days…but, I’ve run ragged.
This morning my husband asked why I bother setting my alarm clock so much earlier than I actually get up. I told him, he just doesnt understand how hard it is for me to get up every day. I need to have that alarm going off so I can force myself…and it takes a while.
I do all the things that I do (that involve Connor) b/c he is the child I wasnt suppose to have. He was my little miracle. I didnt have the best childhood…my parents were divorced, I was the youngest by ten years, and it was hard sometimes. I want him to have everything I didnt.
I dont want him to remember a Mom that couldnt. I want him to remember a Mom that tried her best.
My husband is very good to me and always reminds me how lucky I am. And, I know that. I’m afraid if I were to tell him what I’ve told you, he’ll be disappointed or mad. And he’ll say that he always tells me to stop or slow down or do this or not that. And, he does. But then…who is gonna do it !
Last night after baseball, I vaccummed the stairs and the downstairs family room. I was barely able to walk back up the stairs. Hubby brought the vacuum back up and was suppose to vacuum the living room upstairs…instead he put it away. I didnt say anything…but it wont get done until I do it. I ask him to do “chores” but …I dunno. He always says he needs to get stuff done around the house. Doesnt happen. He is a procrastinator. BIG TIME. I love him dearly, tho and he’d give his right arm for me otherwise.
We decided to move to this house after I was diagnosed…it’s about 3,000 sq feet finished. It’s alot for me but there are rooms I dont go into and clean all the time. As things progress with this CIDP, well, there will be more rooms left unattended. But, I love my house and I’m thankful for it.
I just need a little help.
This weekend we have his daughter. Let the fun begin. 😮 She gets paid by her dad for chores and all she has to do is take out the trash and empty the dishwasher. She gets paid rather well, I might add. I ask her to do something and she gets her little pre-teen attitude. I’m sick of that so I’m beginning to have the attitude right back or I just dont ask her to do anything. And, that’s not fair. She should have more on her chore list b/c she’s old enough now…but , I’d rather not deal with her being a snot about it.
The stress of being a step parent is worse than any other stress I have. Constantly walking on “eggshells”. I’m finally getting my husband to see what I’ve seen for a long time. She doesnt like me…or her brother. I’ve known her since she was 18 mos old. She’s a very smart girl but very very emotionally immature. That’s a saga for another day.
Thanks for your advice ladies…I’m working on finding a way within myself to accept that I cannot keep this up and I cannot do what I once did. I am not super Woman and I shouldnt try to pretend I am. ….now, if only I can live by those words, I’ll be alright. :rolleyes:
have a great weekend everyone,
AnonymousMay 23, 2009 at 10:12 am
I have had the same problem with my wife and family.
Back in 2001, and 2002, and 2003, I was afflicted, but I could still get around. My life sounds like yours. I did all I could, right up to sleeping time. My wife doesn’t cook, So I had the full time 60 hour work week plus cooking when I could plus house fixing up plus games plus driving to school plus shopping, you get the drift, you do the same stuff now.
I went full tilt boogie for 16 hours a day and slept 8.
Now I go about half speed for maybe 4 hours.
In a couple of years, I will be spending probably less than an hour on my feet each day. It is almost there now.
Maybe your CIDP is not as bad as mine is right now, maybe it won’t get this bad, I certainly hope for you it won’t. Most people maintain a level of functionality with CIDP. I hope your level is still a lot, and will stay there. But you don’t know, and that is what stinks.
With CIDP, it isn’t always what is happening to you right now, it is what might happen to you down the road. Some CIDPers are wheelchair bound, some are wheelchair users. Some need a walker, some need a cane. Some can walk unassisted. I used to walk miles and miles and miles, I loved going places, and I didn’t mind walking. I could walk 54 holes of golf in a day. When I caddied, I carried two bags and did 36 holes frequently. Me losing my feet, my legs, and walking really stinks.
But I digress. Print this and give it to your hubby.
[B]1.) It is not about love, it is about functionality and pain.
2.) The place where functionality stops can differ from day to day. Just because I did it yesterday, does not mean I can do it today.
3.) The deeper I get into fatigue, the longer it takes to recover.
4.) I desperately want to do everything.
5.) I desperately want to do some things tomorrow.
6.) Help me manage today, so that I can have tomorrow.
1.) You must help
2.) Hubby must help
3.) family must help
4.) You must let them help. (This was, and still is, hard for me.)
AnonymousMay 23, 2009 at 7:36 pm
Wonderfully Phrased Dick!!!!
I wish I could give you some suggestions Stacey, but since I’m in the same situation, I’m still learning myself.
Dick’s list is pretty to the point, not mean, just spells it out well. Especially the Help part!
Thanks for bringing this up, I didn’t know others had these problems as well-I’m happy to know its not just me and my fault when confronting problems at home.
I hope you find something that works for you, Stacey. Glad to read you’re using your cane at work!!!!:) Proud of You Girl!!:D Hope You have a RELAXING weekend!!:)
AnonymousMay 26, 2009 at 2:14 pm
I do say I’m exhausted. I do say I need rest.
I run myself ragged. Daily.
I’ve got to be the one to stop this. Dick is so right in saying that maybe I’m ok now, but we dont know what’s gonna happen and how much more this will progress. If I dont take care of myself today…what’s going to happen to me. Will it be my own fault for not slowing down ? It very well could.
Before we moved into our house, I’d take a bath [B]every[/B] night. We moved into this house and had all three bathrooms remodeled. I was so excited b/c the main bath has a beautiful, great, big, tub. In one year, I’ve taken maybe five baths. 99 percent of the reason is b/c it’s faster to take a shower. How sad it that. The 1 percent is b/c yes, it is harder to get out of. But, I can and should before I cant.
I dont want anyone to get the wrong impression of my husband. He is a wonderful man and would give me the moon. He does tell me to rest and to sit, etc.
Things wont get done tho…and it’s my personality to do all the things I do, the way that I do. I feel like I’m giving in to the hellish disease if I stop and slow down.
It’s as Dick says, “I must ask for help”. Who would have thought it could be so hard ….just asking ?
With summer here or soon to be, I’ll be able to slow down a bit at the pool.
I am a sun girl and I love to swim and be in the sun. Connor loves the water, too…so, vedging in the sun, will be my therapy.
Thank you all for your support…I’m glad I was able to bring up something we all deal with…just one of many challenges in our journey.
I have treatment today. I wish for a miracle.
AnonymousMay 27, 2009 at 7:15 am
Hi Stacey! Well at least you see we all kind of have the same problems or simular. You have to take care of you so you can do the things you want to do with Conner! But I see a fighter with alot of Will Power and Determination. That goes along ways when a person has that. The summer time for me is also relaxing being in the pool. And I eat garden fresh vegetables and that too helps me feel better! Take each day one day at a time. What you can do then do what you can. What you can’t do then don’t try doing it. And listen to what your body tells you that day! Hugs
AnonymousMay 27, 2009 at 11:13 am
Stacey, Dick is so right on with his post. I used to be all over the place before this CIDP attacked. I used to have OCD really bad, I have two children to raise, I had meals to cook, plus was a secretary and a girl friday for my husbands business, I used to drive a thousand miles each week. I started walking with a cane within 2 years after diagnosis, but still pushed on and went to bed late a night (11pm). Then about 3 years ago I had to start using a walker but still did everything for the house, family and volunteered. Now since last year I am wheelchair bound, can’t do the house cleaning, can’t drive, can’t even clean myself by myself, have to sleep 4 hours during the day because of fatigue, about once a month I get to cook the meals for everyone (and then the next day I am exhausted). So when you feel exhausted rest, when you need help ask, when you need anything that you think you can do but your body says no please ask. Asking is hard and I also still have problems with this myself. My husband and children have come to turns with what is going on, but I am stubborn and determined to keep doing what I can. I have to sweep the floors at least once a month and my husband and children just know that I need to be needed. And personally I think that is the hardest thing with this disorder is to lose the feeling of being needed because everything becomes a chore and harder to do. In November of this year I will be a CIDP person of 12 years.
Just be strong mentally for yourself and have your family read up on this disorder. It is hard in so many ways but with your family love and support and help you can get through this.
Many blessings and hugs to you
AnonymousJune 2, 2009 at 10:30 am
OCD. I never thought about that. I”m just a normal woman…a wife and mother with a full time job and a hectic schedule. OCD makes alot of sense. Maybe that’s why I cant put off certain things. I dunno. My CIDP is very very slow progressive…it takes a month or more sometimes to notice any changes and when I do,they are subtle. I am very greatful for that…but underneath it, I’m terrified of what the next few years will bring. I know how far I’ve progressed in three years…what will ten more cost me ?
Dick, I copied your post and sent it to my sis and husband. Hubby didnt say a word about it and my sister called me that night asking how I was doing.
Since my last post,
Nothing has changed. I was off yesterday and went to my primary dr for a rash that is so out of control. I get the rash as a side effect from IVIG. Well, two days in the sun put it in overdrive. Talk about ugly.
He put me on a spurt of predinisone and said to stay out of the sun.
Sure thing Doc.
I’m going on vacation to Myrtle Beach with my hubby in TWO days…but, yeah, I’ll just stay in the room.
Um, NO. I WONT.
It was a pretty nice weekend tho and I did get some extra rest. I slept in a bit later and just kind of hung out at the pool. I didnt over do it for a change.
I’m still super tired but that’s just the way it is.
I appreciate all of your posts and you all had very good suggestions. Wish you were here. I especially like the “full tilt boogie” remark…:p And the needing to be needed is right on.
Tonite I’ll be busy packing for our trip. Connor will be staying with my sister. I am very worried about that part…but, I know she’ll be good to him….and hopefully wont teach him a bunch of naughty words or habits. SHE thinks it’s funny. I think it’s disrespectful. But, trust me…she has a new grandson…and what she teaches my boy, I will teach hers !
turn about is fair, isnt it ?
I’ll post when I get back …just me and my hubby going to Myrtle Beach for five days.
Take care everyone.
AnonymousJune 2, 2009 at 10:06 pm
remember, guys read things and understand them. They don’t always speak right up. (unless it is in their best interest)
Your hubby sounds like a great guy. I’m not sure it is a matter of him ‘coming around, just a matter of understanding and learning.
CIDP is a tough hand to play. If it was a broken leg, you heal and go on with your life. If it is the flu, you take your meds and wait it out. But CIDP is just so different. It sounds like your case and mine might have some similarities. Slow progression, damage measured over years, function varies day to day.
In a situation like that, it is just hard for others to figure out where you stand with your CIDP. Some days they see you good, some days bad. Sometimes you laugh, sometimes you cry.
Remember how most guys are…. tell us what you need, and we will try our best. Make us guess what you need and we don’t do good, because we don’t know. Women are better at anticipating others needs than are most men. It doesn’t mean we don’t love you, we just think different.
AnonymousJune 3, 2009 at 11:45 am
[QUOTE=Dick S]remember, guys read things and understand them. They don’t always speak right up. (unless it is in their best interest)
Remember how most guys are…. tell us what you need, and we will try our best. Make us guess what you need and we don’t do good, because we don’t know. Women are better at anticipating others needs than are most men. It doesn’t mean we don’t love you, we just think different.
I need to print this for my significant other. 😀
AnonymousJune 3, 2009 at 12:45 pm
Dick you are so right about men. Especially, MY man…he isnt the type that can just “guess” either. I have to tell him directly. He always tells me that he cant read my mind. I, as a woman , and know that other women are like this, too, expect him to read my mind. Not really…but kind of…if that makes sense. Sometimes it’s just too hard to come right out and say what I need or ask for help.
I had a fall this morning…I’m going to post a new thread b/c I think it’s something someone else reading might learn from.
Three more hours at the office and I’m outta here till next week.
thanks for your support…you all mean the world to me.
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