Last reply 7 months ago
Just to say hello

Hi everyone.
I got Diagnosed with MS 3 years ago I’ve been doing ok just one flare up not that long ago but doing ok apart from that but since having that flare it brought me back to reality again as I felt great all the time and the ms didn’t even cross my mind Felt like I didn’t even have it I just felt like me again & now I feel like I’m low at the moment because it’s never going to really go away.it’s like just because I look and sound ok people think I’m fine when deep down I’m really not I just put on a good show sometimes just wish I had friends that understood me and what I go through even when I’ve got a smile on my face it’s hard it act happy all the time when that not the case. Need to speak to people that do understand just feel alone at the moment.

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rmdaniels
7 months ago

@emma_knights
It sure is a mental struggle, dealing with the emotional ups & downs of life & then to add this MS monster in the mix! I was diagnosed this year & feel the same way. Some days I feel like my future was robbed of all that I’d hoped for. I know that’s not true though. I still have so much to be grateful for.
Fortunately, the MS monster can be easy to hide for a while. Maybe it’s easier to deal with it in stages. It’s just daunting because most people don’t understand. We got you on here sweet lady! Keep posting!!! We care!


itsmewithms
7 months ago

I’m a pretty active person and when diagnosed 15 years ago it was hard to believe and accept. While I would take my shots/treatment as prescribed and go in for my annual MRIs to check for any activity I really wasn’t being impacted by the disease. I really was impacted more by being diagnosed with the disease. It affected insurance and some of the plans I had for the future. Even now only one of my friends and a handful of family know I have MS.

For example one thing it changed up was when we designed and built our dream house we made it such that all my living could be done on one level. The master bedroom, kitchen and laundry are all on one floor with a minimum of stairs to get into the garage. The garage is sized and laid out that a ramp could be added. The stairs to the basement could have a stair lift added if needed. We also considered a design where the master bedroom was on the upper level to reduce the cost. It would have reduced the cost about $100k! and I argued that if we stacked large closets such that the floors could be knocked out and a personal elevator installed at that time we could do that. We found some small ones that would be in the $50k range so ther was an overall savings to reducing the house footprint. My husband insisted on one story living ;-0 so the house is more expensive and huge. But I have to admit I love it and it is comfortable and will accommodate a wheelchair if needed in the future. Even my bathroom is structured with these considerations like a large walk-in shower and vanity that could be switched out for a wheelchair accessible one.

I encourage you to embrace every good day you have. Make the most of it and plan for the future and what you may need then.


look
7 months ago

[email protected]_knights,
I definitely hear you i.e. putting a brave face on things affected by your Ms. It’s very difficult to find a balance and sometimes it can feel too much of an effort to try to educate others. It can be very tough to be strong and even tougher sometimes to be strong emotionally but this is such a good site with so many on here who totally understand the day to day struggles so you don’t have to feel so alone.
😀⭐️Loo – K


stumbler
7 months ago

@emma_knights , MS is the invisible illness, but it is quite prevalent up in Scotland, so you’ve possibly got neighbours, who are suffering in silence too.

In fact, if you check out our map or member’s locations (https://shift.ms/map), there are a few Shift members resident in Aberdeen.

It is difficult for non-MSers to relate to how we feel. Awareness does need to be addressed, although how to increase awareness is a bit of a conundrum.


look
7 months ago

Hi @emma-knights and @stumbler – yup , I too am in Aberdeen (shire) 😀🌟I know there are lots up here! Xx


potter
7 months ago

I wanted to welcome you to the forum, you can rant and rave about your MS and we might even join you. We understand how lonely this disease can be and will always be here for you. I know what you mean about not having a relapse and starting to believe that you really didn’t have the monster MS. My second relapse was ten years after my first, you can imagine how surprised I was to wake up to half of my body numb. Pottter

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