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Crochet89 profile image
Crochet89
β€’36 Replies

Honestly I'm just looking for someone to talk to. I was diagnosed with MS at 30 years old. I do not drive so I do not leave my house. I'm very secluded and just want someone to listen and talk to me. Thank you for reading!!

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Crochet89 profile image
Crochet89
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36 Replies
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Shunneddune profile image
Shunneddune

ivee been on disability since 2004 I'mI'm and rarely leave my house...so I'm here if you need to talk

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

Thank you, I appreciate you. Disability came shortly after the diagnosis as it was too late to treat the damage. Do you also have MS?

Shunneddune profile image
Shunnedduneβ€’ in reply toCrochet89

No I'm psychiatric disabled bipolar anxiety agoraphobia and dysthymia

Shunneddune profile image
Shunnedduneβ€’ in reply toCrochet89

So what's on your mind?

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

Just severely depressed with my life right now. I'm almost to the point where I can't walk. It weighs heavy. And I have no one to talk to about it.

Shunneddune profile image
Shunneddune

Well I won't pretend to be expert on ms as I don't know much about it but I do understand what it is like to be alone and dependent on others for everyday needs with no one understanding you.?.but I found there's a lot of helpful people here and all you have to do is post.?.do you also suffer from anxiety.?.you mentioned depression which I could teach Atlassian in

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

Severe anxiety. (I can't even call and order pizza) My anxiety meds just put me to sleep so I take them as sleeping pills. The MS is really dragging me down. I eat once a day. Barely move off the couch. I can feel it declining and there's just nothing I can do about it.

Shunneddune profile image
Shunneddune

Well I stay on the couch most days and experience declining mental proweess.?8m still have so smarts but I can't remember much...there's lots you can do.?.I read but have trouble focusing...even though 8m able bodied I cant walk much either...I'm out of shape and used to smoke 4 pa KS a day. For over 20 yeears...I'm down to ten or less cigarettes day...but my oxygen stays around 92

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

I'm definitely addicted to my Juul. I crochet. I've done it for 14 years now. Got my teaching certification for it last year but im too shy to do online classes. I hate the feeling of getting weaker that's all I feel. Fatigue is HUGE for me and it's disheartening.

Shunneddune profile image
Shunnedduneβ€’ in reply toShunneddune

Have you tried puzzle books..on the rare occasions before setback I bought a Brin game bookand I have a fear of dementia....I sSwear I don't enjoy many of my pastimes NY more..l8ke I'm obsessed with stimulating my mind....so what country you live in...I live in USA

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

I am also in the US. I play a game on my phone but that's about it. I don't really Facebook or Instagram. No tik tok. I try not to be on my phone all the time.

Shunneddune profile image
Shunneddune

You just have to pass the time somehow...I have often been misdiagnosed and spent a lot of time staring at walls so just doing nothing can definitely improve you mood and distract yourself

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

I should've been diagnosed in 09. The stigma of you're not old enough threw a wrench in that though.

Shunneddune profile image
Shunneddune

I meant just doing something

Shunneddune profile image
Shunneddune

Here's a way to look att it....in a bon Jovi song he sings,,,if you can't do what you do you do what you can

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

Ugh the 80s music is my favorite!! πŸ˜‚ That is so true. I absolutely do what I can and more than that is a maybe. Just hard to grieve the loss of a body you're still stuck in.

Shunneddune profile image
Shunneddune

What treatments are available for ms?..are they helping any?.? What depresses me is having a cognitive impairment and a mental illness....I suppose it's similar ...not ll8ke normal aging just suddenly your dealt a blow and you know your life will never be the same

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

That's exactly how I feel! The only treatments they have are to help slow the progression (its like chemo) I'm just so young and it depresses me to think I have to live most of my life like this. I'm so sorry you're (kind of) in the same boat.

Shunneddune profile image
Shunneddune

I live in the past too much I guess

Shunneddune profile image
Shunneddune

Well this website I just discovered last week and it has boosted me up.Nd helped me change my mindset in such a brief period of time...made get back in fight...if your not struggling your not trying

Shunneddune profile image
Shunneddune

Well this website I just discovered last week and it has boosted me up.Nd helped me change my mindset in such a brief period of time...made get back in fight...if your not struggling your not trying

Crochet89 profile image
Crochet89β€’ in reply toShunneddune

I'm so glad it has helped! Thank you for responding to me, I wish you nothing but the best!

Shunneddune profile image
Shunneddune

Hey if it weren't for your post I would just been struggling trying to understand the news feeling sorry with myself...I wish you nothing but the to you aswell...I just took my m3ds so no I have go through my 3 hour routine to hopefully sleeep.?.been on my main med over 17 years but 8f but maybe will r7n into each other again

Crochet89 profile image
Crochet89

Best of luck!! I hope it all goes well. Thank you for the chat!!

012703060610 profile image
012703060610

While I do not have MS, I have four other autoimmune disease. One being the real pain as it can't go into remission. I'm only 44 with 3 young kids. I don't leave much except for the 20+ doctors and therapists I see. My illness has taken over my mind as well. I hate that I look anorexic, I'm losing hair due to immunosuppression meds, I have open sores all over my body. I lost the center of my nose and it's about to collapse. We are similar in that our diseases progress and are degenerative. No one, outside of my sister who is a doc and husband, understands how awful these autoimmune disease are. Then the medication to control can wreck your body even faster at times. Are you on LDN by chance? I started it 4 months ago and had improvement with pain. I brought it to my Rheumatologist and he researched...he said he now has 5 MS patients on it as well. It would be more of an add on essentially. I haven't been on a biologic yet, but that may be next. OYE! I'm here if you want to PM and vent about autoimmune mania! Thank you for posting, I haven't found many folks on this HU group with autoimmune issues.

Crochet89 profile image
Crochet89β€’ in reply to012703060610

I've lost a good 70 lbs since my diagnosis. I am on a DMT so once that starred I had thinning of my hair πŸ˜”. I'm not in chronic pain get as numbness is my main symptom. It's awful. No one around me understands. I no longer drive. 3 young girls. I'm too young for this garbage. I appreciate you responding to me. I'm so sorry you're on this autoimmune titanic. It's so terrible.

012703060610 profile image
012703060610β€’ in reply toCrochet89

Titanic is good word! I'm sorry you have young kids too. I too have issues with driving due to BP issues and syncope. I have passed out several places. I can't keep my nutrition in balance as I have a paralyzed gut. Only should eat soft/liquid food. That's NO FUN. There is a LDN site here on health unlocked as well. Attaching an article as it describes the numbness and how LDN treated it. I don't know much about DMT, but LDN doesn't seem to have any interactions with things and the one drug I haven't had side effects with! Will be thinking of you.

ldnresearchtrust.org/jazzy-...

ghousrider profile image
ghousrider

Good morning have you had any help of any local clubs disabilty clubs like support groups if you like in england & the midlands local councils can help you do not put on screen where you live ghoust rider

Crochet89 profile image
Crochet89β€’ in reply toghousrider

I dont think there's much of that around here πŸ˜”

80sDreamer profile image
80sDreamer

I’m here if you want to talk. πŸ˜€

Yogasan7676 profile image
Yogasan7676

Hi hope you are ok ! I know what it is like to be on your own with a with chronic pain condition ! I have had mine for 33years and spent a lot of money on it ! I also know people with MS and it's not very pleasant ! So thinking of you and keep your chin up!πŸ˜„πŸ‘.

Yogasan7676 profile image
Yogasan7676

Hi hope you are ok ! I know what it is like to be on your own with a with chronic pain condition ! I have had mine for 33years and spent a lot of money on it ! I also know people with MS and it's not very pleasant ! So thinking of you and keep your chin up!πŸ˜„πŸ‘.

Crochet89 profile image
Crochet89β€’ in reply toYogasan7676

Thank you so very much for the love!! Still chugging along. Wishing you the best!!

kbrauer profile image
kbrauer

Good morning,

Crochet89, how are you doing this morning? I have a couple of friends and my aunt have been dealing with MS for a number of years as well. If you want to talk I am around, I will listen and visit with you, if you would like. :)

Bramble2000 profile image
Bramble2000

Hi, I rarely leave home either. I have physical health problems but also have PTSD and can’t go anywhere new etc without someone with me. Trouble is I’m single with an 18 year old son who has severe ME and very recently diagnosed with Autism. I don’t have any friends or family. It can get very lonely. X

I'm sorry to see that you're suffering. Try to find a support group for MS patients and look into government programs that provide free transportation. Getting out and about can be very therapeutic. Good luck..

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