dragonfly42 13/04/18
Last reply 2 months ago
Helping loved ones understand symptoms

Hi all, I was diagnosed with rrms 16 years ago. My family and I have had an horrendous 18 month…the stress has been unbelievable! My husband and I also lost our beloved dog (our baby๐Ÿ˜Š๐Ÿ˜ข) in November. I am on my 3rd relapse in 7 months (the most I have had in such a short amount of time) my symptoms this time are numbness to the bottom half of my body, pins and needles and my feet either feel freezing or cooking hot even though they feel normal to the touch. The numbness of my abdoman is one of the most bizarre symptoms I have had – a few different types of numbness ๐Ÿ˜•. After all that waffle…..my question is – how do my fellow msrs help their loved one understand their symptoms (without moaning๐Ÿ˜ฏ) my husband just seems to look at me like I’m a whinging nutter๐Ÿ˜ฃ. Having had so many issues over the past few months I feel more of a hyperchondriact than I normally do, but, I feel like my family and friends think I am putting it on๐Ÿ˜ฏ๐Ÿ˜ข, and are sick of me wincing and groaning. Even though I really didn’t want to go on steroids AGAIN, I started methylprednisalone tablets this morning. …hence the late hour๐Ÿ˜. I am feeling like a waste of space. Any advice will be greatly appreciated. Wishing you all well xxx

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grandma
2 months ago

You are not a waste of space or time just remember that


grandma
2 months ago

Sorry pushed the wrong button, happens a lot๐Ÿ˜ To reiterate you are worth every day and every hiccup, if you feel your family are fed up that’s their problem not yours, tell them you have had enough, you don’t need any extra stress especially if you are in the middle of relapsing get cross if necessasary enough is enough!

By the way I totally understand about the dog, 10 years ago we lost 2 in 6 weeks so when we had another we vowed not to let it happen again so we had Freddy 10 years ago and Bronte 18 months ago (trouble was 6 months after Bron he buggered off after 43 years of marriage so I was left bringing up a puppy by myself!) Tears and frustration a pllenty but I wouldn’t change anything, they get walked on the arms of my wheelchair/mobility scooter, there is nothing you can’t do by yourself if necessary!


stumbler
2 months ago

Hi @dragonfly42 and welcome.

I posted the following a few years ago, but it’s still as pertinent as ever :-

https://shift.ms/forums/topic/describing-your-ms-symptoms


lisaneighbour
2 months ago

Hi everyone

I am totally with you on this.
Itโ€™s so difficult to get family and friends to understand how you are feeling, without feeling like you are moaning.
Thank you so much for the link I am going to tweak this and send to my husband.
I love the bit at the end!
As just yesterday I mentioned how much I was struggling, to shock my husband replied โ€œ Well, you are not doing any exercise at the moment are you?โ€
I rest my case.

Lisa


dragonfly42
2 months ago

Aah thank you all๐Ÿ˜Š. It’s just nice sometimes to remember you are not alone. I am feeling a lot more positive now, and you are right grandma – it is their problem, I do struggle with the fact that my husband thinks my Ms is more of a problem for him๐Ÿ˜ , and especially as I am not able to work and eveyday is like a weekend for me! I totally get the pushing the wrong button thing, don’t you just love it when your finger/hand decided to click on something for fun๐Ÿ˜ก๐Ÿ˜‚๐Ÿ˜. I am sorry to hear of your troubles too, and don’t dogs steel a place in your heart ๐Ÿ˜ฃ๐Ÿ˜ข.
Stumbled I – love that link…I think I might just print it and hand it on my wall ๐Ÿ˜.

Keep your chin up folks, stay well and thank you all again xxxxxx


dragonfly42
2 months ago

Hi all, I had a message from someone, but my finger decided to delete it ๐Ÿ˜ฌ๐Ÿ˜ . Please accept my apologies and please resend if you can. Thanks
Sal๐Ÿ˜Š


novemberrain
2 months ago

Hi @dragonfly42 my family have firmly swept my benign MS under the carpet although my Mum will talk about it if pushed. They just look bored and its inconvenient for my father especially. He also advised me to stop using Shift so it didnt upset me! My husband finds me frustrating. My heart bleeds ๐Ÿ˜‰ You’re doing amazingly well and are so strong to have dealt with all the relapses and loss of your beloved dog. We’re all here ๐Ÿ˜š

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