Alone--lucky, but alone

[lemstar]

I have had MS for 30 years, although I was only diagnosed two years ago. My symptoms are mostly sensory, with a little weakness, and my hands are a little clumsy due to numbness. I also have fatigue sometimes, and my stamina for exercise is low.

So my MS is invisible. I get the feeling people around me are tired of hearing about it (not that I talk about it alot). I felt a wierd buzzing last night, and mentioned it to my husband, who sort of grunted an acknowldegment.

It is wierd living with these symptoms. They are with me all the time. I am very lucky, as I am still mobile, and functioning fully, for the most part. I just feel alone that no one knows how I feel, all the time. It feels like no one rreally cares, or realizes just how much it does impact me. I want to feel my arm and hands again normally! It makes me feel claustrophobic! My legs and feet feel numb-ish all the time.

I also had a lot of other health issues over the past two years, including emergency surgery with a colostomy!! due to diverticulitis, and then surgery to reverse the colostomy, and repair the hernia caused by the colostomy.

I am 55, and fighting an uphill battle in terms of fitness. I was never very...um...athletic, and always a bit chubby, but now I am struggling with a malformed abdomen from all my surgeries, and having been somewhat sedentary throughout the past two years. The hernia still requires careful exercise, very careful.

I just feel alone. I also feel guilty for whining, as I do know how lucky I am. But at this very moment, I am not feeling lucky....

[stalo]

Lemstar, you are not alone! I am officially not dx yet but all of my sx are invisible also. I am numb, tingly, twitchy, cognitively fuzzy, tired, wobbly, no stamina for exercise & some days very fatigued. I have pain that comes & goes, but for the most part, I am very lucky as well. However, I don't talk about what I am going through because I haven't been dx so they try to tell me it is just normal & I am just whining. OK...whatever. But I think even if I was dx, I wouldn't talk about it for the reasons you give. I am struggling with not being able to exercise as well. I empathize with you...we all do...so please come here when you are feeling alone. We will be here to support you & let you know that you can vent about what you are feeling anytime you want & we will gladly listen!

[Waydwnsouth1]

I am sorry you feel so alone but with this forum none of us are really alone. I think we probably all feel that way sometime. I know I will try and talk to my DW about things that are happening to me and she will usually just say really. I guess in our spouses or friends defense they truly have no way of knowing how we feel or what we are experiencing. I know it helps me feel better to talk about it. I don't overdo it because I would be letting MS define me but there are times I just need to talk. When I am not feeling the support I need I come here. I know this may sound really strange but I get some peace here. I know I am not alone even if I don't post anything.

[CasinoKathy]

Hi lemstar, you did the right thing by coming here- where you will find others who understand and are willing to listen.

I don't feel like you are whining at all! We all have to let it out sometimes, I know I come here quite often! Sometimes others don't understand that we are feeling bad when we might look ok on the outside.

Better days are ahead-- we have got believe that!

[Seasha]

lemstar - I hear you loud & clear. I jsut recently submitted my own whining post today. We all need to do it from time to time. Of course, no one will really "get it" until they walk in our shoes. You have friends here, you know.

You have had quite the year and hope you can get back up to some kind of speed with your exercising. Even slow speed is good. Have you thought of taking a low impact yoga class? That has really helped me thru the years.

Anyway, take care of yourself and it's true - better days are ahead like Casino said!!

[Spydre]

Lemstar, I know a bit how you feel, and feel free to vent. My hubby, while he acknowledges what I go through (actually, he just doesn't think it), he acknowledges it when it's convenient for him.

I'm still functional for the most part as well, except when I'm in an exacerbation. I got disability for other issues, and my MS only played a minor part (basically saying because of issues in my left hand, I can't get a job as a legal secretary again). But it's frustrating to feel this way, but no one can tell.

(gentle hugs)

[Thinkimjob]

Don't worry, you're not whining. Better out than in, as my Nana used to say.

[lemstar]

Thanks guys....and yoga is a good idea....and thanks for listening, and understanding!

[Lexie]

You are not alone with friends who understand here. The people at my work are about to drive me insane. I think my bosses know because I told them I was being tested for MS when I was in the hospital for a week. That was in October and I was diagonosed in May but have not confirmed the dx with them. No one ever asks how are you. They are all so self centered. I look bad especially in and around my eyes. But I am an in my 33 year here and probably one of the oldest here. It's a me world with the young people I work with. This too shall pass!

[lusgirl]

lemstar, you are not alone. I understand how you feel. I have felt alone as well until I come here and realize that I am not. That is such a load of comfort in trying to navigate through the ups and down of this disease. Keep your chin up!

[Tawanda]

I just feel alone that no one knows how I feel, all the time. It feels like no one rreally cares, or realizes just how much it does impact me.

I just feel alone. I also feel guilty for whining, as I do know how lucky I am. But at this very moment, I am not feeling lucky....

I think being human means being selfish. I have excepted that people generally don't care, and if they do, I am pleasantly suprised. Knowing this has freed me, and turned me into a more caring person. I want to "pleasantly suprise" someone when my M.S. is being good enough to allow me out of my own head for awhile.

From all the invisible symptoms you descibed, etc., I could have wrote this post. I think that these invisible are not discussed enough on this site. They could make a person go insane and no one without M.S. will ever get it!

[Camsue]

you're not alone

It may not be the best, but you are married....my husband and I divorced shortly after my diagnosis 20+ yrs ago ...no matter the reasons, I wish I had someone with me.

Guess the grass is always greener but you should appreciate your husband...you may need to rely on him some day.

Of course you can whine here but celebrate your wellness...you realize you've had this MonSter for 30 years and only have "sensory issues"..REJOICE!!!

My best to you

[Shallwearpurple]

sharing invisible symtomps

Anyone else here think that maybe a spouse doesn't quite understand because you haven't shared enough?

I just realized in the last week or so that I haven't told my family half of my symptoms.

My kids were questioning why I was going to the doctor when there's nothing wrong with me. I told them a few things that shocked them. They knew I'm in pain sometimes, but didn't realize that there are a bunch of different kinds of pains (plus sensations or lack of them) and that they are daily, almost constant, most of the time.

They certainly don't know much about my urinary troubles and nothing about my bowel troubles. Ditto for hubby.

Didn't want to whine. Maybe I shouldn't whine, but type a list and hand out.

[stalo]

Good point, purple. The other day, I was very weak & trying to show my 13 yr old how to rake up the "helicopters" in the yard. I got SO tired. He kept saying he couldn't do it & I said....your mom possibly has MS & is very weak today & SHE can do it so get over here! He didn't know weakness was part of what I am dealing with. I should maybe tell them a little more than I am...