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551343 tn?1506830518

FINALLY my husband saw ME how I really am

Yesterday morning why oh why I have no idea. I got up after posting on here and felt ok in myself, and even had a shower. Whilst I was having my shower i noticed on the left of my back by my ribs I could not feel the shower head hitting my skin, it was quite bizarre. Weirdly the day before I had spasms in that area and gave it no mind because I just get these things, they come they go lol.

Anyway it was freaky and i didnt like it. I have noticed too recently when i bend over it feels like there is something hanging off the back of my right leg just under the bottom cheek along the thigh. Its weird it feels like someone is touching me, or like i said i have string or something hanging lol....this has been going on for 2 weeks.

Everytime I have a shower and get dressed it wipes me out for a bit and exacerbates my fizzing legs.

So I go downstairs and the kitchen is just in a mess. The sitting room has stuff just dumped, glasses, plates and crumbs on the floor and my husband is just sitting there on his sofa watching the telly.

He turned around and looked at me never said morning or nothing, and started to complain about the THROBBING in his left hand. For those of you who dont know the story he had a nerve trapped in his ulna nerve just had it operated on.

So I looked at him and said oh thats a good sign it probably means the nerves are finally repairing themselves.

So he said to me I cant cope with this it is driving me nuts.

That was it the catalyst......I went nuts.......

I told him he has no idea what I put up with every day. Throbbing in my hand ha ha get real. I told him the real me, that I am just sick of it. I have lost my life...its gone I am 60 years old yes i have had a good life but my life was over.

I said to him you just sit there and moan about a bit of throbbing, but you can walk and do all your hobbies, you can go off to work, (he is flying to Norway today even though 3 weeks ago he was dying). I told him he has no idea how I feel.

Every single day I get up and do the same boring things. I get up and dressed. Its a struggle.

Tidy his bed and the bathroom.

Go downstairs, and do all the dishes and sort out the mess that he leaves it in because he has to cook late at night.

Wash the kitchen floor, hoover the sitting room, feed the cats, and try to take the dog out for a walk.

EVERYDAY the same thing. Just doing those few things take me about 2 hours. By 10.30 I am in pain again and my morning energy rush is waning. Then I cant do much else.

On Tuesday and Wednesday my care worker comes and sometimes she takes me out and we go in my wheelchair around the shops.

5 years ago i was teaching and looking after 54 tutors, and he is sitting there moaning about a throbbing hand.......

I actually said to him i would rather have had cancer at least it would be a case of being cured or not. My illness is like the living dead. I feel like i am in a prison.

Then the tears, and tears and i just sobbed and sobbed i have never cried like that before in my life.

He was so shocked. I dont think he realised or had any clue as to how i really feel. I am strong very strong, and there I was laying on the settee sobbing my heart out into a pillow.

I didnt think i would stop to be honest.

He actually came over and gave me a cuddle. It was a long time before i calmed down.

But I finally think my husband got the message.

Later that day he fixed 3 things i have been moaning about in the house, and even hoovered his bedroom which is a mess. The first time in 20 years he has actually hoovered a carpet.

He didnt want to go to Norway today is worried about me, but I think it will do him good to reflect on our lives, my life, and how I feel for a change.

Everytime I tried to tell him how I felt, he would tell me what pain he was in and turn it around to him.

This is the same for my daughters, if I mention I am in pain or have spasms or feel low they always turn it around straight away and say how they feel. No one actually just gives me a hug or send me a text message saying hi mum hope you are ok today, no instead i get a phone call asking for money or telling me all about their problems.

I am just sick of it all and I think that throbbing pain in my husbands hand became the throbbing pain of my life.

I just needed to share. You my internet buddies are the only ones who really understand. I get more support from you then I do from my own family.

And that is the truth.

My sister is the one true person who really cares over me. She drives 30 minutes to see me, and then goes to work driving 30 minutes back every month. She rings me all the time and makes sure i am ok.

Thats all I want from my family.

Just a little text or message to say hi mum hope your ok.

I just want my husband to listen to me and support me. I dont ask much. I do lots of stuff even though I am in a bad way some days, I always make sure he is ok, and my pets are ok before I worry about myself.

Anyway finally I think my husband saw the real me. The person behind the mask.

Now I have to find a way to get out of this prison i am in and start living again. Maybe my illness has just erroded slowly all my reserves. Who knows.

Thanks for listening. Its a new day today, i have to do something otherwise i might as well give up totally. I am not sure i am ready for that quite yet.

I didnt share this for you to feel sorry or bad for me, I dont need that honestly I just wanted to share with you a little bit of my life. I am sure you can relate to it.  xxxx Maria
7 Responses
1530171 tn?1448129593
Hey Maria,
I know how it feels, as I have been through the same thing.
And when your own parents -no blame allocated, it's where people are in life-do not see the pain and suffering of their own kids, that really hurts.
Eventually things do change, as you mentioned Mike finally, after all these years, came to realize what is really going on with you!
Here's a link to "Courage" :
http://www.youtube.com/watch?v=PwoUM8ETFfk

Courage by Justin Hines, A real Angel on Earth!
I saw him in concert last year and had a chance to talk to him.
He was born with a disabling joint disorder, but this hasn't stopped him to
travel all over the world and spread his inspiring message of love, hope, courage and joy through his music and songs.
Hope this brightens your day!
Love and Hugs,
Niko
1917408 tn?1421952040
They say it is cathartic to get everything out in the open like that. It sounds as though some good may have come from it.

I'm sure it was far from pleasant to go through, though! I can completely understand feeling like the tears and emotions would never stop; you have been keeping that stuff dammed up for a long time. Once the dam broke there was a lot to get out.

You expressed very well my fears about this type of illness. At least with cancer or heart disease or whatever, it is clear cut and there are some definitive answers!  

Someone in the MS Forum posted a link to a long essay: Nancy Mair's essay, On Being a Cripple

http://userwww.sfsu.edu/~mmartin/Mairs.pdf

As I was reading, I was wondering why her illness seemed to be progressing so quickly. Didn't she respond to the medications to slow progression, etc? At the end I noticed it was written in 1986 so there wouldn't have been such things available. And really being denied a diagnosis and therefore access to the medications that can slow progression just puts everyone in Limbo Land at that same disadvantage. You HAVE gotten a raw deal. 60 is not that old! It would have made sense to me to have at least let you try some of the MS medications to see if they helped while they tried to figure out what was causing you to have MS symptoms even if you didn't meet all the criteria! Adding in the added insult of no diagnosis and the lack of validation that goes along with that, you were certainly due for an emotional eruption!

I am a big fan of herbalism and holistic medicine whenever possible, but not to the point of excluding commercial pharmaceuticals when dealing with something this life altering!

I hope your daughters will soon make the adjustment in their attitude that it sounds like your husband has made.

Valerie
1760800 tn?1406753451
Maria

Sometimes it takes an explosion like that for those closest to us to see what is really going on.  Especially if you are a strong independent woman.  No one ever expects us to need help let alone offer it to us unsolicited no matter how sick we are.  

I hope that this helps and your husband continues to be the support you need.  He needs to talk to your children and tell them to be more support as well.  

It is amazing how much support we get here on our forums -  This has been a godsend to many of us as we navigate these crazy neurological waters.
I am thinking of you and hope this finds you well.


Tracy
1627868 tn?1333886342
I am so sorry that you are going through this right now, but I am glad that you were able to get it out.  I glad that your husband heard you too!  Do you think it will stick now?

I agree with Tracy, he should talk with your children and tell them they should be more supportive.  Maybe they talk about themselves because they are trying to show you that you aren't alone or think they are being supportive by comparing what they feel to what you are feeling?

I really hope that your husband not only gets it for now, but that it sticks with him for the long term.  I seem to run into issues with my own husband in this area, nothing sticks, lol!
Love and hugs to you!
Sarah
956292 tn?1334054869
Been there - done that, my friend..you need them to see and understand..

Love you

jenny
Avatar universal
dear maria,

i am glad you got all of your feelings on the table and that your husband seems to have responded in a productive way.  and maybe his trip to norway is good timing--allowing him time to reflect on everything you said while you can decompress a little bit and not have someone to pick up after for a time.

i wish there were something i could do/say that would help fix all of this for you, me and everyone else on this board.  please always know that we are hear to listen when you need to vent and be a virtual shoulder for you to lean on.  i've said this before, but you have been so much to so many--it's no wonder you had to release some of the stress.

i hope you will re-investigate breakspear as part of your renewed resolve.

love
binx
1475492 tn?1332884167
Oh my dear Maria, hugs to you... I hope this will bring about change.
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