Yesterday I went to an appointment and my husband accompanied me. The lady that I was seeing asked me some questions that I did my best to answer and my husband turned around and asked me " Are you feeling o.k.?" His question didn't imply concern but embaresment. Now I didn't realize until that point that there was anything wrong with me besides a headache and that I was appearing out of it. But his question ticked me off because as I said he asked it like he was embaressed which of course made me upset and I snapped at him. The interviewer said I seemed like I wasn't feeling o.k. and I let her know that I had a headache and she offered me some ibuprofen. When do you let people know that you have MS. Should I have just told her that I have MS and excuse me if I don't seem right. My husband was no help. It really hurt my feelings that he was trying to "carry me". Because MS effects my cognitive abilities there are times when I appear out of it. I don't know how to correctly answer a question or I may stumble over my wording. I might not understand what I am being asked or process information. What can I do? It makes me sad. Today I am depressed. Is it my MS or is it my present circumstances or is it both? I don't know the difference. Do I need to get help for my depression or just wait for it to pass. I don't know. I feel like I am a burden on other people and I just want to be left but I can't be left alone, I have kids to take care of. I hate feeling like I'm having a pity party when things could be worse but I can't shake these feelings away. I feel helpless not knowing what to do. Maybe tomorrow I will feel better.
- Resources
MS is getting the best of me.
I'm glad you're feeling better. I think we all have to learn to be our own boosters and our own best caregivers.
I've had significant decline in my cognitive abilities but still work full time in a pretty demanding job. At my last neuropsych exam, the doctor said I am unlikely to be able to continue in my job much longer (similar issues that you mention such as not being able to understand & process information -- I've had some pretty embarrassing situations). I told the doc that I wasn't quitting and he gave me some really good advice: Forgive yourself.
Those simple words have helped so much! Now, when I have trouble getting words out of my mouth or am suffering brain fog, I try to remember that it's ok. I have a disability and sometimes it's going to put on a show. I'm not going to be apologetic about it.
Hi there !
I also have moments when my concentration eludes me. My husband used to give me funny looks. That was 6 yrs ago. He no longer does it because he knows that the ms has caused all these funny behaviors in me that make me look like I have been drinking.
We have learned to go with the flow. It may be easier for us to do this because we were avid sailors before the ms retired me due to balance and weak legs.
When we go to the doctor he is there to help me tell the neuro what is going on with my body.
I find it hard to conduct household business when I am feeling this way. I always tell the person on the other end of the phone that I have ms so please bear with my questions. I just want to make sure that I have written down everything we have discussed correctly. Everyone that I have dealt with this way has always been kind and helpful.
Must say though, I took me 2 years of the first 6 past years to get myself to be this open and honest with my disability.
Good Luck in your endeavors.
Blythe
Hi again Theresa... I'm glad to hear that you're feeling better today. As for the "subject" matter..do you really want to hear about the husband thing from me? I could make you laugh, I could make you cry, or I could make you say things that would shock you yourself... into possibly an incredible fit of rage. I'm basically on my own forthmostpart as far as the emotional end of this MonSter disease. After putting up with so many obstacles since my diagnosis 11 years ago..I think I've done damn well considering what my poor old body has gone through (four surgeries) and I'm still moving my tushie as much as my weak legs can take, every single day. For instance..three days ago, I got up at 6:30 am on a beautiful morning, While the coffee was brewing, fed my gorgeous little Welch Terrier, washed several windows, then the curtains, hung them out and put them back up, unloaded the dishwasher, made breakfast, showered, washed my hair etc etc, all those important things first of course. and all this before 9am mind you... Then I prepared a great meal for dinner that night, mowed the lawn, went to the gym for an hour, returned later after grocery shopping, then I washed three floors, vacumed the entire house, cleaned two bathrooms, stripped beds and remade them after washing alll the linens and putting them away. All this by 2 in the afternoon. I finished up a few more chores after dinner, and hubby's comment (from in front of the tv mind you) was, ARE YOU STILL CLEANING??????? Right now, just sitting here today, I am very uncomfortable as I was all day long, ( I think I overdid it) but I still went to the gym and worked several hours outside today planting and mowing again etc etc. Over time, I have taught myself a mindset to help me stay conditioned with the pain...as much as possible. It's either that, or I might strangle someone!! (Does the "HUSBAND" thing come to mind)? I'm not really sure what his feelings are about this thing I have anymore, but at this point in time I don't even care. I do know that he cares, but I cant help thinking he he feels compelled to do so. Besides, my kids would come down on him before anyone could bat an eye. Yet I dont want pity, I've always been self sufficient and extremely proud, and that will never change. He, on the other hand makes me feel at times, that I am just plain dumb and helpless..(DUH) Not taking into consideration that my cognitive reactions sometimes are not always what they should be and "WHY" they are the way they are... the moron!! I'm acting weird through no fault of my own but he reacts negatively..Even though I realize what's happening to me, as he should .. when it just happens, I want to scream because the frustration wells up too much in me! Maybe it's because he refused to read any of the literature or verse himself when I was diagnosed..YA THINK? I think he's had enough time to get a grip on some of this stuff don't you? Yes, I have been embarrassed because of his abrupt behavior at times and lack of understanding. No, I dont want him to answer for me even if it takes me longer to react at least not to the point that I sometimes just want to throw something at him. Besides, I still think I'm smarter than he is anyway!! We recently had a discussion about the possibliltiy of "something happening to me" and his response was "Who's going to take care of me?" He's two years younger than I am, (HE LOOKS MUCH OLDER THAN ME TOO) his health problems are nil because of the way I take care of the putz..and he's worried about himself!! My response was "BITE ME!!" He actually laughed..but I meant it!! I go to the gym 3 or 4 times a week to keep up my strength and to get the H--- away from him now. (He's retired) I took a real estate course in May and plan on getting into it when the economy hopefully turns around in my state so I can be on my own..That scares me a bit because of the very frustrating cognitive problems I had during class, most of which I hid of course. I guess I just wanted to prove something else to myself too even at my age.. I work out in my garden and fiddle around with landscape design every day weather pending and my strength of course. I generally use as much organic and fresh products as possible and cook him real gourmet meals all the time. He is well taken care of and extremely spoiled.(I can thank his mother for that one) In any event, some people just don't get it or maybe they don't want to I guess because it isnt about them!!. Maybe it's too much "work" for them to try to be more understanding of this disease that we obviously did'nt elect to have. I find myself using a lot of humor in this..because too much anger will get the best of me and most definitely causes more pain and sometimes relapses, so I've learned. As long as I sleep well at night I can get through just about anything with this thing. I havent been to the doctor at all this year so far and soon I have to get going with all those bloody tests again..Something I choose purposely to put off until I cram it all in again. My attitude is better...when I ignore those ridiculous lame remarks of the ignorant ones that have'nt a clue what we're going through..and would'nt know what to do if it happened "JUST ONCE" to them!! Be well...Paula
Hi - I told all those close to me before I was even diagnosed that it was MS .. and was not afraid to tel people what I have .. but since it took me to really know , you find out who your real friends are ...
I am glad, cause within the year we bonded as a group .. who just understood by the look in my eyes that I was done .. and made sure I took care of myself .. as support is important, and how are people to know what you are dealing with if you don't say ?
It isn't easy , but if who I am telling, and lately complete strangers , because if I was slow, or unsure, I could see it in their eyes, and the people around you ... I am not enbarassed .. nope, I just laugh and say , "Darn that MS" ... and smile , the girls behind the counters where I am normall shopping know .. so we laughed ...
I have learned that people who are indifferent, I am especially nice to ... as they just don't know ... and you can't expect them to even comprehend , unless you wear a sign .. so you shrug that off .. but "close" friends , people yo would see on a regular basis , the attendents at the docs ... I would and did develpoe a "repore" , this is me , and I am still me , just slower ...
I hope I didn't go to overboard , this is just mt experience, and not everyone is me .. but it isn't anything I am shamed of , in fact I find it educates people , and you would be surprised at how many people you do tell will tell you of a relative, or friend that has or had MS .. it's releasing, and comforting at the ssme time ..
i will stop now, as my meds are kicking in , and it is rest time for today ... hope you write back .. agserra
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I'm in a better mood. Look how quickly that depression turned around. Just yesterday I was feeling all blue and today I feel better. This makes me wonder again if it is the MS that effects my moods.