invisible illnesses

[jann1033]

as i posted other places i have cfs, diabetes, av malformation, maybe ms(that's not confirmed just suspected by 2 drs.) I have had the av malformation all my life, cfs/ms since 1988 and the diabetes recently dxed..my daughter has clinical depression, doing not so good and going through divorce...this is just background for the ?? i want to ask

now the ?? ,,,my husband is very supportive, my kids somewhat supportive, my mother very unsupportive, she has ra, heart disease so i know doesn't feel well and i try to help her out as i can and am always kind to her...i know she is upset about daughter although she is of the "snap out of it " mentality with clinical depression . last week i took my grandbaby over to see my mother since my daughter hasn't been up to it..mother literally ripped me a new one, called me a fat lazy a**, made mean comments about my religion, really gave it to me because in her opinion we should be "doing More" to help daughter...no idea what the "more" is, i watch her baby 2 times a week or more which is what daughter asked( said knowing baby was with us relieved her mind at least about that) which makes me basically incapacitated for at least a day between ie husband has to do housework etc. i asked daughter , she said she has no idea why my mother did that IE wasn't complaining about lack of help ...so i conclude it is what i figured it was ...my mother totally regards my illnesses as "nothing" just as she has for my entire life...i am so angry about this i don't care if i ever see her again( actually i told her she didn't know what she was talking about & i never raise my voice to her) so i guess my question is

how do you handle someone who just because they don't see you when you can't get dressed assumes you are lying and just lazy?

if i were a mean or uncaring person i would understand her reaction but i kill myself to help her and my kids and have done so my entire adult life...for her to be so mean and unfeeling...hello it is my baby who is suicidal ..i am trying to get over this and just forgive her ( what i always do when she does something like this even though she never apologizes )but i am still angry and guess i realized that is how she thinks of me in reality which is very hurtful...i really don't need that added negativity right now but feel guilty so that is negativity also

 

[Mackey Mouse]

I had to do some research before replying and of course I am not a doctor, just a Mom like you...no grandchildren yet though..

Chronic fatigue syndrome is so difficult to live with for the patient but then add into the equation that those who cannot see it do not think it is real. It is real and I am so sorry that you have to go through this. AV malformation, from what I read quickly, does what cause you headaches and weakness??? Reading it frightened me a bit and now add into this equation, diabetes...that one in itself is a difficult one to deal with just alone. Now that is just your medical history and a hefty one indeed..

You also have the worry of your daughter, which can get anyone down, including her.. adding her to my prayer list...Somedays I do not want to clean the house, then there are other days that it is good therapy for me, but I feel ok, you on the other hand are not always feeling 100%

Thinking here, how old is your Mom? How close is she to your daughter? Is she well enough to help out with your daughter? Sometimes if you can just say something like I am doing the best I can, Mom, how would you like to help IE.. She could use xyz...now that is providing she is not too old to help out.

Jann, this is a hard one for me, as I lost my Mom too early in my married life, my children miss her every day and so do I.. I carry her in my heart.. I guess I do not understand mothers that criticize but do not want to help...or have you asked for her help? Sometimes the asking may do the trick....

Anyway, please know that you can come here and vent anytime you want. You, your husband, and your doctor know what your illnesses are, maybe you could have the doctor write a letter and you can show it to your Mom saying something like I am doing the best I can with it all.

Hugs..

 

[jann1033]

thanks for the helpful words.. i lost my father 2 1/2 yrs ago, my mother is 80 ( but even with her illnesses extremely active) and that is why i try to keep tabs on her, help her..etc..it 's just her basic personality and i can deal with that if i feel fine and didn't have the added stress of my daughter being a mess right now, it's just very hurtful to know nothing i do is good enough in her eyes..which is how it's always been, usually i just handle it better.

i have a very large congenital av malformation in my knee and that causes Kipple Weber syndrome, basically skin ulcers that don't heal that lead to recurring cellulitis and phlebitis . it's considered disabling now because if i am on bed rest for about a month + they will heal but as soon as i get up they break open again..it also causes cardiomyopathy and according to my one dr eventually will lead to amputation cause eventually they can't heal them..it used to be wearing a jobst stocking helped keep them healed but it doesn't any longer, it's just to damaged due to yrs of the problem..i had a really bad infection in july of 05 and they didn't think they could fix me up but they did ..of course now the diabetes probably is not helping that much either but i think the fact i am so inactive due to the cfs probably has helped me keep my leg.

the cfs is so wearing..a few researchers and drs that really know about it feel the fatigue is basically a good thing since your organs are on the brink of organ failure due to your body not producing enough energy in the mitochondria..they feel it is mitochondrial dysfunction with secondary cardiomyopathy...so it basically shuts you down via fatigue so the vital organs don't fail...that's why you can't just push yourself like you can with some illnesses... and that is what it is almost impossible for people to understand...they hear "fatigue" and think ( and lots of time are so happy to tell you)"oh I'm tired too" but they don't realize you can not move your arm back to your side if it's outstretched, you can not make it to the bathroom in time because you have to sit down and rest along the way you can not get a shower or wash your hair cause the heat takes what little energy you have and you can't hold your arms up long enough to soap your hair...it's hard to describe but sometimes i just HAVE to lay down flat, not sit down or put my feet up it's gotta be flat . and if i try to just "push myself" like people love to advise me to do i get much worse and it can literally be yrs that i can't do much beyond maybe changing out of my pjs...

I've had this almost 20 yrs and i know what i have to do to keep myself as stable as possible( which is basically do nothing if i feel the least bit tired) but it is so frustrating to have to keep defending myself to people who really should know better...i was one of the "super woman" types before i got sick and that has been the hardest thing for me to deal with..i hate hate hate hate hate not being able to do most of anything i want and i try not to be crushed when people are so cruel but sometimes i just can't take it and especially not from some who should really know better

she called me this morning and we talked about mundane subjects like feeding the birds so the "crisis" is over but as usual nothing is really settled and it'll just happen again. but since daughter is having her final divorce hearing weds, and is off her medssad2: ) cause she didn't have the money to buy them didn't tell us( i had just given her money last month for them but she messed up her checking account big time) and her new insurance doesn't start till weds so then she can get them( where is the tearing your hair out smilie when i need it )...i don't need the added junk with my mother right now so i'll just suck it up and deal with that later

i'm sorry to be such a complainer..i read about little Avery and feel so awful for him and his family, i can't even post on there cause nothing i say would be enough and this is nothing compared to what they are going through so sorry for ranting...i think I'm just losing it.

 

[Tim Gunn]

Hi Jann. I know it might look weird to have some guy from a reality TV show talking to you on your thread but I'm really another DISer who has been living under an alias during the DIS's game "Extreme WPASADI" that we have been playing since fall.

I wanted to post to you because I can so completely relate to what you are going through.

I have Chronic Adult Onset Stills Disease, Fibromyalgia, Von Willebrand's Disease and some other minor things stemming from the AOSD and I'm also BiPolar. All of these diseases are as you say "invisible".

I've had my share of people just outright hurting me by blasting into me because "I don't look sick". Why some people only accept an illness if they can physically see it is beyond me.

My mother also had a lot of trouble accepting that I was sick. She was in denial at first and thought it was something I should just "snap out of". She was always the kind of mother that would more or less punish you as a child if you got sick. You were imperfect. What's wrong with you? There were times that I would let a strep infection go to the point of danger because I was afraid of telling her. She started backing off of me a bit when the doctor put me on chemo drugs in order to kill my immune system. Once she saw the hair falling out and me throwing up, it became a bit more real to her. It didn't mean she was more understanding, just that she seemed to accept the fact that I was sick. The day she was diagnosed herself with Parkinson's - she did a 180. I guess with some people, unless you are in their shoes, they are in denial.

Anyway, my Sister-in-law, after 3 yrs into my diagnosis, decided one day to rip into me like no body's business. She emailed me and told me that she was sick and tired of my "fake" illness and to "get over it". Some other nasty things were said but I have pushed them out of my mind. It hurt me so bad because this person used to be like a real sister to me. She was the matron of honor at my wedding 4 yrs earlier. She was one of my best friends. Someone I could talk to.

So I just started avoiding her. I wouldn't call to talk to my brother or niece/nephew when I knew she would be there. I didn't go see them when I knew she would be there. And if I did have to be in the same room as her, I ignored her.

It's hard to have to do that when they are people that you love. It hurts so much to think that someone so close to you doesn't believe or understand the pain and struggle you go through each day just because you don't have a visible indication of your disease.

I don't know a lot about CFS because that hasn't affected me although I wouldn't be surprised to develop it at some point. I do get bouts where I literally sleep for 48-72hrs at a stretch (which my drs do know about and are okay with because of how I push myself physically) but luckily the immediate people around me understand why that happens. I could only imagine having to go through the hassle people give you when I felt like that. I'm so sorry they do that to you.

My advice to you is to tell your mother and anyone else that might give you a hard time is that they don't have to understand or accept your illness if they don't want to. If they don't believe that after all these years of medical care that there is not a very real problem, well, then that's their problem. YOU know what is wrong and your DOCTORS know what's wrong and you will only do what is best for yourself, and if they do not like it and cannot keep their opinions to themselves, you will discontinue the conversation right then and there. And if they do start in on you again - walk away or hang up the phone. It will be hard to do but it will show them that you are serious and its the best for your health. Stress can be detrimental to anyone suffering from chronic illnesses and you have to get that stress away from you.

I know its easier said than done and it took me a long time to be able to do it myself, but once I did, things improved greatly. While I can't say the relationship with those in my family that gave me grief is perfect, its much better than it was and I am finding that they are giving me more of the respect I deserve.

I wish you lots of luck and love and hope that you can achieve some peace and harmony in your family. If I had a way to make them understand for you I would do it in a heartbeat. Just know that everyone here on the DIS is on your side. We understand what you are going through and we are here anytime to talk or vent with if you need it. And my PM box is open to you anytime when you need someone to talk to. If you have trouble contacting me, just have Marsha (Mackey Mouse) track me down. She's a pretty great person, isn't she?

 

[luvwinnie]

Here is a Website you might find helpful

www.butyoudontlooksick.com

 

[Mackey Mouse]

Thanks Tim for posting, you did a great job... and thanks for the website luvwinnie, I hope it helps the OP.

 

[jann1033]

thanks so much for all the help...

"tim" i think once things settle down i will sit down and have a long talk with her...at least that way she'll know how i feel and if she doesn't respond , i have done what i could to keep a peaceful relationship with her..husband is a little ticked off at me for calling her yesterday to tell her about daughter's hearing and talking to her the day before but he'll get over it i appreciate a lot of what you said

luvwinnie..i have been to that website before but forgot( one good thing about memory problems with cfs...you have so many "totally new" enjoyable experiences cause you just forget you did that same thing a couple months before ....) i remember the spoons story which was so great. i'll spend some time there later( ok so it's 1 pm and i have yet to do anything but eat breakfast )

Mackey mouse...thanks for starting this board (or what ever you call it , i never know). you've got your hands full and it's nice of you to help out others too.

 

[Mackey Mouse]

It helps me to help you all... it is cathartic for me..

Hugs.

 

[hematite153]

I'm so sorry to hear that your mother is unable to support you. Thanks for sharing your frustrations with us.