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398059 tn?1447945633

Nothing wrong with you

Often there we get comments from family, friends, and others that their does not seem to much wrong with Michael.

Whenever we see him he seems normal.  He can walk around and seems okay.

So, you all seem pretty normal to me too.
32 Responses
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1221035 tn?1301000508
Thanks for your comment and the link......It is me that has no desire, my husband does not seem to understand MS. He expects me to do ALL the things I have always done. I created a monster years ago by doing everything in our home.

We have been married 27 years, and have 5 kids. Two are married and we have a 16,14 and 12 year olds at home. I have always done all the cooking, cleaning, laundry, shopping, taking the kids to work, gymnastic, etc, the banking/bills. Actually the kids do the cleaning now. I have divided the house into three sections and they each have chores. My husband will just walk in and say something to me like: can you go get a container of coffee for me, we need it at work. WHAT!

I am always telling him, I just don't feel well........He just doesn't get it! and I don't know what else to do.
Helpful - 0
739070 tn?1338603402
I understand everyone of these scenarios. When I was working I was always told how good I looked despite all the doc appt. and missed time, falling and using the wall frequently to lean against.

I've had a family member tell me "I just want sympathy". She of course saw me for a grand total of 2 hours.

Initially my own immediate family had doubts, but falling and blooding up the house soon got their attention. They all eagerly and willing came to the Copaxone teaching lesson so they could give me shots if I was unable.

Daisy girl- You are NOT alone in your statement. I know it was hard to put that comment out here in the "public so to speak". I  was met with that in the beginning (before the great fall and hospitalization) and it took time but things are going smoothly now. There is a Health Page dealing with this subject. See if it might have some suggestions in there for you.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Sexuality-and-Multiple-Sclerosis-/show/609?cid=36

My family now is completely supportive and all of them go out of their way to help me. Sometimes too much since it makes me feel like I've lost my independence but I am proud and humbled that I have such a caring family.

Ren
Helpful - 0
Avatar universal
If you get an MS dx, at least you can get the pamphlets from your neuro that are written to children of MS and explains it to them. Could it be that your husband is as frightened as you are and doesn't know how to deal with the fear because men aren't supposed to be afraid? As far as your husband's being nonsupportive? I'm in the same boat with a jerk (when it comes to my MS). You know what I learned? The only one he makes look stupid is himself, and that's what I've been told by the people who have heard him being stupid. Still, I love him and take care of him. I have learned to just flat out say "no" when he's pushing me to be his slave..and I mean that literally. He runs my butt off until I tell him to stop. Only you know how to deal with your husband and let's face it - a lot of life is flat out trial and error. (I've also learned to hold my son-in-law and daughter back because they get angry on my behalf) I have to admit that I am battling some anger at him right now for being an "idiot" and that's partially my fault for putting up with his garbage. He threatened to move in with his brother (who doesn't want him cause he's sick himself) and I said, "You know where the door is" he's still here :)

If you get a dx of MS, your local chapter of the MS foundation has seminars for couples which might help you and your husband.

Hugs
Helpful - 0
Avatar universal
I'm am pre-dx still and still going through the testing process. My husband is never, ever going to be understanding or supportive. My husband will say things like, "Ahhh....there's always something wrong with you!" or when I felt like absolute crap after a lumbar puncture and dropped something and picked it up and was like, "See, you're fine, you're moving." Moron!  His comments don't really bother me so much because I know that he's an idiot and I can divorce him. I am fortunate enough that I don't have a lot of symptoms like many people do. I do however have problems with fatigue, which is extremely frustrating because I am normally very energetic and on the go. If I do end up with a DX and if I get worse, I am NOT going to stick around for his rude comments or lack of support!

The thing that DOES hurt is when my 8-year-old says, "You're lazy, because you just sleep all of the time." Gee, I wonder who he heard that from?

What's going to happen if I get worse? I feel like no matter how crappy or weak I feel I have to tough it out or trudge through it just so big mouth will keep his mouth shut.
Helpful - 0
Avatar universal
Having to use a cane, I no longer get the, "there's nothing wrong with you" bs. Instead I get stupidity from my husband (he is in denial about the MS). When I had the first of the 2 past exacerbations he actually accused me of faking it. It didn't hurt, just ticked me off and showed me how selfish he is, then let it roll off my back. Why? It was ridiculous. Because who in their right mind is going to "fake" an exacerbation and go through IV SoluMedrol?

Bottom line? I don't have to live with the people who make the dumb comments of, "but you look so good" so I try to ignore it. I have one family member who was the leader of the pack pre dx of spreading through the family that I was a hypochondriac. Even after dx she says dumb things like asking me how I was feeling while I was having an MS fog. I told her I was tired. She told me, "So am I but I worked all day." Instead of getting angry I looked at her, hopefully kindly and said, "I'd rather be tired from working." It pulled her up short and she was embarrassed and said, "I know". But again, I don't have to live with her and only see her a couple of times a year with our busy lives.
Helpful - 0
738075 tn?1330575844
With the "you look so good" BS, I've learned to say thank you, and really mean it.Most of the time I feel pretty sh!tty, but I don't always express it.

I was talking to my DD this afternoon, and she 's always careful to ask if I have enough energy to do this or that.  She, and my mom, dad, and sister are always asking "how ARE you..."  Frankly, I'm tired of saying "not great".  I told my DD today that all of that is pretty boring, and I'd much rather talk about YOU!  Because I feel cruddy most all of the time.  If I really want her to know, I'll pipe up.  I want to tell the rest of my family the same.  

So from there, I make an attempt to look as best I can (even if it means pulling on my rattiest yoga pants and a not too stained T shirt),  tell folks I'd much rather talk about what THEY'RE up to, or anything in my life not having to do with MS.  Because MS is my reality.

All that said, though, my family is really great, I appreciate them no end, and I tell them so.
Helpful - 0
1396846 tn?1332459510
Words can really hurt and people just don't understand. The ones that hurt me the most are "milking it", using it as an "excuse", and but you look so "good". I have just learned to walk away from people. I will litterally be in a conversation with people and someone will use those words or phrases and I just walk away without saying anything. I figure that gets my point accross just as good as me saying something.

Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
I wrote a post earlier and lost it, seriously not funny, I wrote from the heart, being frank and honnest, i dont have it in me to do it again so this will have to do.....

Autism has a funny way of bring families together or tearing them apart, I think thats true of any major situation that hits a family. We got closer when we got the news about dd, we got even closer when we got the news about ds. My husband internalised his feelings, his worries, his fears, he can be a bear when he roars, he's basically scared and its the only time it comes out, I know that because I know who he is and the type of man I married.

If he's worried he growls, i've worked out i need to find out whats brewing early rather than later, support him but let him know he's going into a dark hole that we as a family can't afford him to be in. We just dont have the reserves to get dragged down into that dark place again with him, we need him but dont need the bear! So we talk, openly and honestly about what we each think we're hiding, but not doing a good job of, we talk.

Just last week he started falling, i knew but didn't speak up for fear of making it worse, wrong move, it got worse because i didn't speak up. I think he had so many worries pilling up and holding in after Dr D went serious about my failing sight, he was also hoping they'd find something wrong with my venous system that would explain what was happening, he was hoping for an out, no MS. Its been hard for him, he just got scared, i'd rather he scream at the moon than the bear but he really doesn't know he's expressing his fears in a hard way for others to understand, so I talk to him and support him and he stops falling.

I dont expect my kids to notice the changes in me, they are self first not because they are not good people but because of Autism. I can tell you now that all the little hints of understanding that they show, bring me to my knees in awe of them. Yesterday, my son noticed what I was wearing and spontaneously complimented me, when I got home from a long long day supporting dd he had lego all over the floor, his first concern was me not falling, seriously wow! My daughter opened her eyes on waking up from her opp, saw me sitting watching her sleep and the first thing out of her swollen bleeding mouth was "how you doing mum, you alright?" Wow I am truely blessed to be their mother!

Their strength of charactor is epic, they are incredible human beings and it really doesnt matter all the thoughtless things that get said because it is these little acts of understanding that mean everything to me, this is all the proof i need that I am loved and they do understand even if most of the time they forget and say something that I could take as meaning they dont care or understand but I dont because I know, I really know!

Peace..............JJ



Helpful - 0
465013 tn?1289261142
Some people can be so understanding and supportive when you explain to them what's going on and how un-helpful the Drs are. But then there are others... My wife saw me going downhill, figured that she knew better, thought I was faking it and divorced me. She said she didn't want to be stuck with a cripple. Absolutely mind-boggling.
TimC
Helpful - 0
Avatar universal
I told my neuro once, that when I'm in a crowd or get very nervous, my balance seems to be worse than when I'm at home in a familiar setting. He told me that was very normal because as your body tenses up things happen.
Helpful - 0
398059 tn?1447945633
Well, stress of any kind seems to set my symptoms off.  You could look at financials or get in to a spat with someone.
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Avatar universal
I hear ya!!! My only problem with that is though is my hand gets itchy. Heat brings the itch on and then I am told I have dermatitis LOL
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398059 tn?1447945633
Sometimes i think the best thing to do before going to see you Dr. is to take a hot bath.
Helpful - 0
Avatar universal
I think I had mentioned in an old post about wanting to go to my drs. appts. looking like I just rolled out of bed, because when you take the time to look presentable, people do not know what you are going through and some drs. don't believe you.

My stepmother made comments to me about how good I looked even after having three eye surgeries and everything else and if I "plan on going back to work". Well,.... you can just imagine how that set me off. I have double vision, I am unable to lift over 40lbs, I have a seizure disorder and bulging discs..... shall I go on... she must be joking!!!!!

My neuro asked me why I was applying for disability (last year) and I told him why, but I overheard him say to his secretaries that I wasn't disabled! Because I didn't "LOOK IT".


Pamela
Helpful - 0
338416 tn?1420045702
That's a good point - and very insightful.  Our loved ones want us to get better, and sometimes just don't understand.
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1260255 tn?1288654564

I think that Red touched on something very important when she posted “It must be so hard to watch someone you love go downhill physically. I think sometimes people don't want to think of you as being sick. Perhaps they are afraid of losing you.” I do believe that behind a lot of people’s reactions are fear and ignorance.

For people close to someone who is either in limbo land or diagnosed with MS, the fear that something may be wrong might lead to denial of symptoms and it may be easier to deal with things that way than to face up to the fact that the symptoms are real, with a potentially debilitating illness. As COBOB posted, MS is one of those often “hidden disabilities” where a person looks healthy and can often function normally. It is not until the disease has progressed to the point where damage is permanent that people must face up to the fact that a serious and progressive disease is affecting someone they know.

It’s probably much easier for the average person to offer sympathy and understanding to someone who has been injured in an accident or even cancer, knowing that there was a definite cause and the likelihood of recovery. In other words, “I’ll have my Jane/John back to their old self, once they have time to heal and go through therapy” or “This is cancer and the doctor’s prognosis is X.”. With progressive disease, that often moves slowly, waxing and waning between good days and bad, it’s scary to face the “what ifs”, because they are so vague.

Another dimension to this, particularly in the case of neurological disorders, is that some of the symptoms are beyond the capacity for many people to understand. Let’s use parethesias as an example. These symptoms are very real for someone who has neurological damage, yet if someone does not understand, or want to understand, the way that the neurological system has been impaired, describing parethesias can lead others to doubt us. Even some doctors have trouble understanding patients trying to describe a paresthia, so what should we expect from the average person?

Think about it…”I feel like I have a cell phone vibrating in my leg” or “ It felt like water was dripping on my arm and I had to check to make sure that my arm was dry.” When you have a whole list of things like this that sound pretty wacky and people don’t understand that they are real, ignorance may lead them to doubt you. L’Hermittes sign is another example that probably escapes the average person…”a lightning bolt shooting down my neck.”

Red also talked about 'faking', 'over-reacting', 'being dramatic'. Here, again, I believe that people are hiding behind ignorance so that they don’t have to face the reality that someone close has a serious medical condition that is indeed mysterious. Culturally in America, we as a society are afraid of death or anything close to it. It is easier to avoid the subject than to educate oneself to be able to offer support and encouragement.

Is it fair? As my mother would say, life is not fair, but in reality it is not fair.

Educational awareness of MS and other neurological disorders is so important. Once society as a whole becomes more aware, afflicted people will get the emotional, moral and other kinds of support that they need and deserve.
Helpful - 0
338416 tn?1420045702
Luckily I don't hear much of that.  I do have a coworker who doesn't get it, but he's clueless in all sorts of areas, so I cut him some slack.  Last month he told me that his friend with MS was walking with a cane, but she was doing just fine, so I should do just fine too!  Dumb, but not something I can really complain about.  At least he's well meaning.

Perhaps it's because I don't talk about it, but people notice I'm having trouble.  Especially walking - my gait is terrible, and I walk like I'm drunk when I'm sober.  When I'm drunk I look really drunk!  (Unfortunately something I'm going to cut back on.)
Helpful - 0
Avatar universal
Yep, looks like a lot of us get some of that directed towards us.
I kind of feel that way at work. But all I do is sit in front of my computer all day.  I'm sorry that I'm not kicking on the floor screaming or doing something else that would make it more evident.  Also, I kind of feel that way with my extended family outside of where I live. But they don't see me every day - maybe just once a year.

What's normal really anyway....

Kelly
Helpful - 0
398059 tn?1447945633
For me sex is still fairly pleasurable.  The problem is not having enough energy and having to deal with numbness to start out.

I feel fortunate in not being able to say I can directly relate.  My legs ache too often and many places in my body simply hurt.

These fleeting pleasures are little respites even if they are but moments that lead to other issues.  My spouse is often troubled in feeling that so much extra work is involved.

I want to say that simply giving pleasure is enough, but it never really is true.

Helpful - 0
1221035 tn?1301000508
okay....I am sure I am going out on a limb here. My husband doesn't get it.....When I tell him no, I am too tired tonight, or that my legs are aching. He starts the 'you really don't love me crap' He makes me feel like I am not much of a woman anymore,

I really do feel bad for him.....but it is just so hard for me. I really do not feel like romance, when I feel sooooooooo bad.

Can anyone relate to this?
Helpful - 0
1312898 tn?1314568133
It must be so hard to watch someone you love go downhill physically.  I think sometimes people don't want to think of you as being sick.  Perhaps they are afraid of losing you.  

It's difficult from each side

Red
Helpful - 0
1466984 tn?1310560608
I have stopped worrying about the comments "You look great!" when I am feeling otherwise.  I am glad that at least I look good - although I always wonder what they were expecting me to look like!

The one who matters the most - my husband - is really getting it.  We were decorating our tree last night, and I was SO tired, and couldn't hold my arms up to help wrap lights etc - I just kept sighing and  taking breaks - and I finally told him I couldn't help any more.  So I put on some lovely music and sat in a comfy chair and helped him by telling him where more ornaments were needed.  He is actually more accepting of these things than I am - I am very critical of myself when I don't have the stamina I think I should have.  I'm learning though and my husband is making it a lot easier!
Helpful - 0
1394601 tn?1328032308
I have had this discussion with my sons over the last year.  It centers on them worrying about me because of MS.  I have tried explain to them that their mother is still the same person.  I am by nature happy and positive.  However, what brings me happiness today is different than yesterday.  The yesterdays might have been shopping and lunching with friends or a hot date with their father or the day after Thanksgiving bargains.  Things change.  There is that "new" normal we talk about....I can't do those things today but it doesn't mean having a glass of wine in front of the fireplace cuddled next to my husband isn't bringing the same amount of happiness.  That happiness can be found even in a nursing home and having him crawl into the bed next to me.  My normal has changed and THEY are the ones that need to SEE ...not me or you!
Helpful - 0
1253197 tn?1331209110
"You look great"...well make up does wonders and I don't want to jam it down my family's throats all the time that I am feeling VERY TIRED and generally just not great...it feels like the record has got stuck otherwise.

I have my pride and do not want to look washed out and feel sorry for myself all the time and particularly if I am seeing someone I have not seen for a long time. There is just so little awareness of what MS is like on a day to day basis and if you say you feel tired, then for sure there ii someone else who is also tired..but you just know that they have no idea of what this fatigue is really like!

Anyhow we all know what we are talking about and understand so thank goodness for forum friends and I shall continue my quest to educate and spread awareness about MS.

Lov Sarah
Helpful - 0
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