Last reply 6 months ago
Feeling Alone

I just feel that, even though my family and friends are supportive, they don’t fully appreciate how bad my symptoms can get (unless they go through it, I know they wouldn’t understand). Sometimes I just feel useless and unable to function and it feels like they’re “bored” of hearing about my “excuses.”

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vixen
6 months ago

Hello @adrianna_k. The truth about our condition is that no matter how much support we have, no one else can ever really know what it feels like to be us. Do you take somebody with you to appointments? Even when we are feeling well, this disease is still rumbling away below the surface. Lesions don’t heal or disappear, maybe you can find a way to introduce people to the actual science of MS. There are lots of short vids on here.or on Youtube. There is lots of support on here for you, so stay strong x


edmontonalberta
6 months ago

Why does it matter? Seriously…

Your role is to take care of #1; yourself… Forget everyone else.

MS is just another challenge in our lives; one of many – very many. What you need is friends / family who accept us for who we are. For what we are able to contribute to the relationship.

Find them; keep them close…


diva40
6 months ago

[email protected]_k. Sorry to read your story. Family don’t really understand and they never know what to say. I was diagnosed in 2013 and about a year ago they started talking about it. Mum keeps reading about miracle cures and Dads upset I don’t stay closer, so they can help. I’m only 4 hours away! My brother doesn’t talk much about it and is always suggesting going on hilly walks, I keep saying it’s too much. I am lucky to have a supportive partner. I’m new to this site and it looks like a great community. I’m also on Gilenya and have been for 5 years will no side effects, touch wood. Look after yourself and randomly if you like letter writing im asking anyone if they want to be a pen pal, (old school)If you want to keep in touch with a Scottish girl(me) let me know. 😊


niteowl
6 months ago

Hi @adrianna_k yes I get it that’s why sometimes I come on here as people do understand, I find it frustrating some days are much harder than others ….. I keep battling through but that’s what we do eh even though we are in constant pain we keeping going until our body decides to crash unfortunately I have hit that again, no-one understands cos I look fine.

I get pressure from work being signed off and I feel guilty doesn’t help they haven’t even tried to understand what am going through.

Just think of today as a bad day and tomorrow will be better ….. rest when you can, if they don’t try to understand are they worth getting upset over ? Breathe and do something you enjoy watch a soppy movie or action thriller lol 😂 switch off to everything else for a wee while x


salma
6 months ago

I totally understand you Adrianna-k!!! I’ve just returned from a week in London went for my mums 75th.it was exhausting as usual 😂 it’s too busy and hectic for me now.i just want to have a relaxing life these days but we always end up pushing ourselves too hard and paying the price later or now as it were.but hey just have to keep telling yourself that you’ve got ms but it doesn’t have you x


ceisinger
6 months ago

adrianna_k

I feel your pain. I was dx with secondary progressive Ms back in 2003. I worked for 12 years after dx in the medical field helping disabled children. In 2015 I had to go on disability because of my mobility. Now I spend my days by myself while my wife works. I have always been the bread winner and my wife is now back at work. I feel worthless and useless most of the time and I just turned 50. I don’t know if I can handle another 30 yrs of stairing at the walls. People tell me to get out and volunteer but I can barely walk without aid. Maybe someone on this site can recommend a place to volunteer that understands MS.

Long story short, I feel worthless and useless since I can’t help out. In fact I usually break things when I try to help and make people angry.


adrianna_k
6 months ago

@ceisinger I appreciate you reaching out. I feel your pain. I’m also in the medical field and after such a busy career, going on disability has been, to say the least, a slap in the face. I haven’t coped well with it. It’s so hard to accept our deficiencies and shortcomings, and I’ve started to realize that not having a goal every day makes my life worse – even if it’s a “small” thing like getting the mail, it helps. I’m glad you’ve thought about volunteering. I don’t know where you’re located, or what you enjoy doing, but have you thought of something at a hospital (i.e. a desk position where you can answer questions or direct people, etc.)? Or there’s an app called Be My Eyes – Helping the Blind. It’s an incredible app and you could help SO many people!! I hope you find something that helps and uplifts you and gives you the opportunity to do good!! We are NOT useless. We just need to find out what our abilities let us accomplish.


adrianna_k
6 months ago

I appreciate everyone who has responded to me! Already the support here has been great.


supermum1983
6 months ago

Your not alone hun, might feel like it sometimes.will always get support on here!!

Since we have had that bit of sunshine its given me a bit of a boost, i still wake up tired but not as much.


stumbler
6 months ago

@ceisinger , given the state of technology today, physical geographic location is no longer a constraint to being part of society.

You have telephones, email and even video-chats available to you. Whilst you can’t physically touch others, you can see them and see their expression.

You have life experience, together with your career experience. So, put this to use on Forums (or is that Fora!) like this or volunteer for a related charity, providing telephone support.

We are not useless. We are just “lesser-enabled”.


ceisinger
6 months ago

#adrianna k
Thanks for the uplifting words. I too believe you feel more accomplished when you have goals. I have silver sneakers through my advantage plan. I think I will start my days out in the gym.

#stumbler
Good name by the way. That is all I do everyday. But I wanted to thank you for suggesting volunteering in the phone somehow. I can still do that fairly well when I am not fatigued and slurring my words.


alexp
6 months ago

I’m here with you! Feel the same a lot of the time. And I get the feeling family often refrain from educating themselves either out of inherent lack of empathy, or out of the fear of what they might learn and the guilt they might feel if they knew the truth.
I agree with one of the other comments above though; its nice to have supportive understanding people around you (wouldn’t we all love this) – but the MAIN thing is to understand YOURSELF and your symptoms and not let other peoples opinions effect you however misguided or uneducated. Nothing will supplant this. It’s not easy to do but one must be conscious about this and remind ones-self when in these situations.

The truth is, even if we had all the empathy in the world, unless there is self-understanding there will always be an underlying feeling of aloneness because we will likely feel handicapped in comparison to other people, which may in essence be true.
Does one need 100% of the human potential to accomplish ones most important aims though. Some people would argue, no!

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