I'm lucky in that my symptoms are not as severe as they are for many of you. I do struggle with numbness in my feet, which occasionally causes balance issues. My hands, especially my right hand, are more of a problem. Through the weeks between IVIG I gradually lose dexterity and control over my fingers and strength in my hands. I also have a lot of trouble in larger arm movements, especially with a raised arm, and pain when trying to do so for any length of time (like more than a minute). Therefore, it's difficult for me to do things like cleaning. But I think the biggest problem I have (as mentioned in a previous discussion thread) is the fatigue. It's all I can do to make it through the work day and my long commute. Then when I get home, I have to get through the dinner routine.
My problem is that my husband (and I too) has huge difficulty with the lack of cleanliness in my house. Because I seem so normal on the outside to most people, many don't understand that I'm sick. I think this is a problem with my husband, he doesn't understand. Getting a cleaning servcie is not an option financially. I do the best I can, but this usually means that I get to one or two rooms each weekend, so at least several rooms in my house are not clean at anytime you'd look. We're not talking major disgusting hording, but clutter, dust, crumbs, etc. (I have 2 young children).
Also, please know that my husband is a good man. There is lots of history as to why he's so uncomfortable with the state of the house. Please don't judge him.
Does anyone have any advice and/or experience dealing with those who do not understand that even though I look normal, I am not? Please help!
Katie I struggle with keeping the house up too. My family realizes I need the help...but their standards are not the same as mine when it comes to what a clean house should be. I cant imagine having to work on top of everything else...I have been out of work since I got sick in Feb.
Some things I do that helps me. I cook dinner in the crock pot most days. I can take my time putting it together...because a crock pot is forgiving on the "rush" factor. I can take breaks between steps.
My daughter is 12...before I got sick I did everything for her...now she cleans her own room, and washes her own clothes. Her room isnt always picture perfect but it's ok...she did it.
I try and keep the front room "company" clean...meaning I wouldnt mind the preacher stopping by and sitting in there. :-) The rest of the house gets clean when it happens...
And finally...I am trying to teach everybody that if they will just pick up after themselves EACH time they make a mess...it wont be so hard to clean later. Keep strong...sounds like you are doing good. It is so frustrating...but this too shall pass. Just know that you are not alone.
Your transparency and openness is like a breath of fresh air! I think the biggest issue with disorders like this one is that we all can "look" normal much of the time, but be in excruciating and debilitating pain and heavy episodes of fatigue. I have the same problem with some of my closest friends and family. They think I should be able to "get myself together" and just overcome these issues. I am a positive person who believes in doing what one can do to better the situation, but I have learned that some suffering is a very private issue, because, unless someone is willing to invest some real time doing their homework, they seldom understand our plight. Sometimes it is one that is not understood or accepted by those we love the most. That makes the struggle extra tough. In fact I think this fact is almost harder to deal with than the disorder.
When I read somewhere "perky, catchy little qwips" about positive, even professing "Christian" feedback, with a "get it together and just do it" philosophy, I try hard not to get frustrated, because I know firsthand how many people will feel deflated by reading some of it. And I understand so many folks do not mean to be so thoughtless, but rather want to be helpful. I am sure that in my early ministry, I dished out some of the same stuff, and I regret it. "Dark nights of the soul" are not experienced by everyone, but when they are, it gives a deeper appreciation to others suffering and pain. We then have the privilege of comforting others with the same comfort that we received:) I know you will be a great comfort to others, Katie, because you have a gift for open communication and I pray you, (and the rest of us), will continue to stay hopeful and be filled with courage:)
I am still coming to terms with my limitations. Just over two weeks out from the first week on IVIg and I am discovering just how much I can/can not do. Today I was pruning grape vines. Slow walking back and forwards and sideways so nothing too intense just slow and repetitive leg exercise. After a few hours I have difficulty walking other than really slowly and just a few stairs is a really difficult challenge (both for balance and strength) - thankfully my hands and arms are only very mildly effected.
The good news is that after a few hours rest I can walk easier and the same stairs are so much easier. The message here is that perhaps that rest period is really important before doing more work.
I fully get that everyone is different and (as in another thread) perhaps that exercise (work) is actually causing more problems for our condition - as I say - I am still finding my boundaries.
We men can sometimes expect too much. My wife works full time as an RN (I am retired from full into part-time work) and she completely understands my situation with CIDP. She has rheumatoid arthritis and is on her feet all day. Even though he is a fine man your husband is seeing a change in you that he doesn't understand. If others and you agree, it might be a good idea to take him with you to your next appointment and let your doctor tell him about your condition and your prognosis. Or, print off some of the comments from this website (forum discussions) so that he can see how fortunate you (and he) are that you can still work. Even though I just mowed my yard (for an hour) I am "done" for the day. Two years ago (at 62) I could work in the yard all day and be fine the next. No longer. Two years ago I could carry my golf bag while walking 36 holes of golf. I probably couldn't walk 2 holes now and if I could my limping would be causing my back to be too painful to swing a club. Lastly, even though I am horrible at housework, it wears me out! Wishing you understanding and rest.
Katie thank you for bringing up this.....I can ditto onto most everyone's response....I am in the boat with you for sure.
But so far my husband has his own health issues that makes it almost impossible for him to do dishes...his fingers bleed and peal...he has seen his doctor an another type of doctor...they told him to use this and that med's but nothing has work really good. Now they tell him to wear white gloves and put the plastic ones over them...only thing we haven't found these white gloves....
What has been a life savor for me is getting this long term care thru our state. I now just started getting help.
I have someone comes in and helps with what I need, either be dressing or bathing, or cleaning...thank heaven for this person.
She helps with the dishes....I wish I had more hours....but I take what they give me. It is wonderful maybe you should check into your state and see about the long term disiability help. YOU don't have to be old...it goes by income and how sick you are.
For me I have servel illnesses and of course the falling down at the hospital a few months back help me get this thru. Lucky for me I guess....but you should anyone of you should look into each of your states.
I'm not sure what it is call in each state.
I truly hope YOU get some help, and never worry about how your home looks family really should know better, and help if they can.
I am too look ok....but then we all probably like me have bad days and better days...never judge another is what I say.
Wishing you the best and hope and prayers your way....
As I read your post, I can't help but want to share that I also dont have the many serious dibilating effects. After being diagnosed with cidp, I was told that the IVIG treatment wasn't for me. I apparently don't have a severe enough case to warant it. But I too have dexterity problems, especially with my left fingers. I also trip and get vertigo if I look to the side quickly look up. My leg muscles get tremendously fatiqued , and ankles go numb.
All that be said I try every day to get past the fatigue because like you my spouse, my wife, is frustated that I apparrently don't have the old wish for walks or even small chores. She was there when the Doctor explained what goes on with this condtion but its frusrating she isn't accepting it yet. I know my wife like your husband is probably doing their best to support me, but it does most definitly get bothersome when what used to be simple, now is very difficult.
I normally don't write these kind of comments, I keep alot to myself and just observe. This web sight is very uplifting because I can see people out there also have issues, as small as some may seem, and its good to hear how others are doing.
OK I was reading again a few of these posts....I just got to add....hope it is ok to do this?
Well my husband is at every apt with all my doctors.....he is so pro helpful I almost can't stand it...yup really!!!!
no kidding....please....he is good I should not feel some of my feelings...for all he does for me....but he complains to me about how he hurts...all the time...it gets to me because I can't do for myself as I once did...I don't know if he really knows how it effects me in telling me all day how much it hurts him to do this or that for me...including my scooter he has to lift up into our car....I know I am greatful for all he does...but still hurts to know it hurts him...
He is a control freak so he likes to talk for me....I wish He would stop....so we come off so bad I guess to people that know us...we are older and been together for years...so it's just the way we commucate with each other....
He really gets into some of the doctors faces...even got into one of my cardo's face and cause me almost not able to have surgery last year....I am weak....I wouldn't do that no way!!!!! but he is my hero I guess because he protects me to all ends.....I just hate what happens when I loose doctors because he is so helpful....
Right now....he wants the cardo doctors to stop saying, "it's not mind area" I can't remember the words sorry...there goes my memory oops.
Well he tells everyone example of what he would do to the next doctor....o m g....I wish he would sit in the waiting room and then come in at least give me a chance to talk....and maybe he wouldn't get so upset.
But he refuses....I try to ask the doctors asst to help me but they don't do anything....so they get my husband...lol
I think he has my dieases / today the provider of my air for my copd is also the provider for everything thru our insurance....they are trying to get me a bigger scooter one that won't run over my feet...see I have trouble with my feet staying on the small size scooter not the weight so much it's long leg me....anyway...he did all the talking...I kept trying to answer questions...but as always he does it for me.
I am sorry if this post of mind might upset anyone.........please, please I don't want to do that....
just listen and see that not all partners are the same and mind is pro everything....I wish he could take my illness lol just kidding....no one should want that...but it is hard sometimes too much care. I should not hate that...I don't just
I've read through this post several times and like others feel comforted when I see others going through what I do. I say all the time that this is a hidden disability because people can't tell on the outside how numb, tired or weak you really are. I am only 36 and got cidp during my pregnancy of all things. I have an 8 month old to take care of and work full time and barely keep it together. I am tired all the time and can no longer drive more than 15 or 20 minutes, do housework, cook and need a lot of help with the baby. I was perfectly fine before this and because I'm in my 30's people expect me to be back to normal. I have to ride the electric carts when I go shopping and can't get over the stares I get because I'm not elderly or have an obvious issue like a broken leg or something. My husband does as much as possible for me, but generally family, friends and co-workers do not get it. As far as cleaning the house goes, it is hard for him to understand why I can't hold a sponge for a few minutes and scrub the kitchen sink. It's only a few minutes, right? It's not heavy duty work?! Still my hand goes more numb and I'm feeling the effects several hours later. We run errands and after the second stop I'm asleep in the car. My mom wants me to exercise becasue the tendons and muscles in my feet and toes are doing weird things since I'm not walking normal. How am I supposed to exercise when I can't feel my feet? When they burn or go more numb from all the movement?
I've found that the house is just not going to be as clean as it once was. I found a home helper agency in my town that does odd jobs for a modest fee. Not professional cleaning, but well worth it and half the cost. I keep food in the fridge that is packaged and simple to makes such as fresh fruit that is already cut up or salad in a container that I can open and close. I have a small stroller in the house I push the baby in since I can't carry her for long periods of time. When I was having trouble turning the car key I used a wrench! Creative adaptations have made all the difference!
I've also found that drinking water is the key to surviving IVIg. Starting a few days before, during and the day after, as much as 6-8 glasses a day. I've also started eating as much fresh and healty stuff that I can find and take omega 3's and a probiotic supplement that I read helps reduce inflammation in the body. I don't know if they really make a differnce but I feel they do and it makes me feel like I'm doing something to help fight this disease.
You say a lot. And do it well. I have wondered all these years with CIDP if my feet doing weird things, and my not being able to hold a sponge but for a minute, and total exhaustion after a brief trip in a car was common with this disorder. Thanks for being so specific. Please share other symptoms if you want to. I think I have bottled up so many symptoms and tend to talk on another level often, because the more family tell me to "buck up" or "it can't be that bad", I just close down and feel nobody will believe me or I don't want to burden anybody. Dumb, huh? I read a lot about CIDP, but cannot find any technical, medical, neurological info, that lists why all these weird symptoms take place...or what exactly causes them. It is like this thing is either lumped with other disorders and never really dealt with, or the medical community doesn't really know much yet. From the time I was diagnosed many years ago, what was written about CIDP barely resembles what is being said nowadays. I have to wonder if this and related disoreders are just "morphing", so to speak. It is so true, and understated...so many family, friends and co-workers just "don't get it"; let alone, the strangers we meet when we are struggling, but don't look like we should need assistance. Thank you for your post. I will be praying for you, (and all of us).
clb75 said:
I've read through this post several times and like others feel comforted when I see others going through what I do. I say all the time that this is a hidden disability because people can't tell on the outside how numb, tired or weak you really are. I am only 36 and got cidp during my pregnancy of all things. I have an 8 month old to take care of and work full time and barely keep it together. I am tired all the time and can no longer drive more than 15 or 20 minutes, do housework, cook and need a lot of help with the baby. I was perfectly fine before this and because I'm in my 30's people expect me to be back to normal. I have to ride the electric carts when I go shopping and can't get over the stares I get because I'm not elderly or have an obvious issue like a broken leg or something. My husband does as much as possible for me, but generally family, friends and co-workers do not get it. As far as cleaning the house goes, it is hard for him to understand why I can't hold a sponge for a few minutes and scrub the kitchen sink. It's only a few minutes, right? It's not heavy duty work?! Still my hand goes more numb and I'm feeling the effects several hours later. We run errands and after the second stop I'm asleep in the car. My mom wants me to exercise becasue the tendons and muscles in my feet and toes are doing weird things since I'm not walking normal. How am I supposed to exercise when I can't feel my feet? When they burn or go more numb from all the movement?
I've found that the house is just not going to be as clean as it once was. I found a home helper agency in my town that does odd jobs for a modest fee. Not professional cleaning, but well worth it and half the cost. I keep food in the fridge that is packaged and simple to makes such as fresh fruit that is already cut up or salad in a container that I can open and close. I have a small stroller in the house I push the baby in since I can't carry her for long periods of time. When I was having trouble turning the car key I used a wrench! Creative adaptations have made all the difference!
I've also found that drinking water is the key to surviving IVIg. Starting a few days before, during and the day after, as much as 6-8 glasses a day. I've also started eating as much fresh and healty stuff that I can find and take omega 3's and a probiotic supplement that I read helps reduce inflammation in the body. I don't know if they really make a differnce but I feel they do and it makes me feel like I'm doing something to help fight this disease.
I also have trouble with housekeeping and I am not working outside the home. My hands and feet hurt and burn if I am too active. I try to do some work every day early in the morning because I am exhausted by the afternoon. I also try to prepare meals in the morning. Clean the obvious stuff, most people don't see the stuff that bothers us. Try to give yourself time to enjoy what you like, it might make you smile and that can be contagious. Peace Nancy
Thanks Lori. I feel the need to bottle things up too but for different reasons. Some people get upset if I try to tell them what's happening so I feel I need to protect them, even though I'm the one it's happening to. Others really just want to hear that you're doing good or getting better, but tune out if you try to tell them how you're really doing. As far as others not believing you, I get it from the doctors too! I think they really don't know and rather than admit it or if it's something that can't be backed by research studies then they are hesitant to say yes that's from the CIDP. I had a cyst on my tendon a few months ago and was told "CIDP does not cause cysts", and to go to my regular doctor for a follow up. Well I got there and of course he had never even heard of CIDP. I explained everything and was told I had a cyst and that it was caused by an inflammed tendon. Inflammation? Isn't that a part of CIDP?! I find that I have a lot of symptoms that maybe CIDP doesn't cause directly but appear to be a side effect. It's frustrating when it seems so obvious! I think sometimes I trust Google more than the doctors:) Lori said:
You say a lot. And do it well. I have wondered all these years with CIDP if my feet doing weird things, and my not being able to hold a sponge but for a minute, and total exhaustion after a brief trip in a car was common with this disorder. Thanks for being so specific. Please share other symptoms if you want to. I think I have bottled up so many symptoms and tend to talk on another level often, because the more family tell me to "buck up" or "it can't be that bad", I just close down and feel nobody will believe me or I don't want to burden anybody. Dumb, huh? I read a lot about CIDP, but cannot find any technical, medical, neurological info, that lists why all these weird symptoms take place...or what exactly causes them. It is like this thing is either lumped with other disorders and never really dealt with, or the medical community doesn't really know much yet. From the time I was diagnosed many years ago, what was written about CIDP barely resembles what is being said nowadays. I have to wonder if this and related disoreders are just "morphing", so to speak. It is so true, and understated...so many family, friends and co-workers just "don't get it"; let alone, the strangers we meet when we are struggling, but don't look like we should need assistance. Thank you for your post. I will be praying for you, (and all of us).
clb75 said:
I've read through this post several times and like others feel comforted when I see others going through what I do. I say all the time that this is a hidden disability because people can't tell on the outside how numb, tired or weak you really are. I am only 36 and got cidp during my pregnancy of all things. I have an 8 month old to take care of and work full time and barely keep it together. I am tired all the time and can no longer drive more than 15 or 20 minutes, do housework, cook and need a lot of help with the baby. I was perfectly fine before this and because I'm in my 30's people expect me to be back to normal. I have to ride the electric carts when I go shopping and can't get over the stares I get because I'm not elderly or have an obvious issue like a broken leg or something. My husband does as much as possible for me, but generally family, friends and co-workers do not get it. As far as cleaning the house goes, it is hard for him to understand why I can't hold a sponge for a few minutes and scrub the kitchen sink. It's only a few minutes, right? It's not heavy duty work?! Still my hand goes more numb and I'm feeling the effects several hours later. We run errands and after the second stop I'm asleep in the car. My mom wants me to exercise becasue the tendons and muscles in my feet and toes are doing weird things since I'm not walking normal. How am I supposed to exercise when I can't feel my feet? When they burn or go more numb from all the movement?
I've found that the house is just not going to be as clean as it once was. I found a home helper agency in my town that does odd jobs for a modest fee. Not professional cleaning, but well worth it and half the cost. I keep food in the fridge that is packaged and simple to makes such as fresh fruit that is already cut up or salad in a container that I can open and close. I have a small stroller in the house I push the baby in since I can't carry her for long periods of time. When I was having trouble turning the car key I used a wrench! Creative adaptations have made all the difference!
I've also found that drinking water is the key to surviving IVIg. Starting a few days before, during and the day after, as much as 6-8 glasses a day. I've also started eating as much fresh and healty stuff that I can find and take omega 3's and a probiotic supplement that I read helps reduce inflammation in the body. I don't know if they really make a differnce but I feel they do and it makes me feel like I'm doing something to help fight this disease.