he doesnt understand my fatigue is REAL

Hi Stacey,

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.

Take care,

Tina

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
Linda H

Hi Stacey,
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.

Hi Stacy,

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.

Erin

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!!

Aww Stacey,

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…

Stacey,

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.

Equally important.

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.)
[/B]
Good luck

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!!:)

Dick S! I could not have said that better! Perfect list and so true! What a beautiful list that you wrote! I printed mine out and will be sharing with my family! Hugs
Linda H

I’ve found the best way to deal with my wife is to tell her that I am exhausted and I need to rest. If I try to push on I will be irritable and inevitably say something that gets her mad. If I tell her I am tired she will let me “recharge”.

good luck,

duane

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
Linda H

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
Pam

Oh how this sounds like alot of fun! You go down there to tha beach and get your rest an enjoy youself! No work for 5 days Stacey! Or Linda here is going to say Naughty Naughty! Eat. Rest, Sleep an Have Fun! That is your to do list this week! No work! Hugs
Linda H

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.

Good luck
Dick S

[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.

Good luck
Dick S[/QUOTE]

I need to print this for my significant other. 😀