Hi There <3

[cosmicwanderer]

Hi. My name is Ari.

I'm 21 years old, and I live in Arizona with my boyfriend. He was diagnosed with Multiple Sclerosis at 21, in October of 2022. However, as a child, he was frequently sick and didn't have the best immune system. He was somehow always hurting, or ill. He also suffers heavily from mental health issues, and has been diagnosed with Major Depressive Disorder in the past. This journey has been so hard for him, and of course it has been for everyone around him as well. But I think we can all agree, its always harder for the person dealing with the diagnosis.

A recent appointment really set it back for us. He'd been doing well with coping, for the most part, and we were heading in the right direction for treatments and getting him into the right place with good people, after so long of struggling to find someone good for him who wasn't going to judge him or not believe him because he's so young. At said appointment, he was shown his brain scans from the last time he visited the hospital and got a steroid treatment. There were multiple upon multiple lesions covering the frontal lobe and a few other areas of his brain. The areas affected have affected his motor skills, and his short/long term memory. He can forget things in an instant and have to be reminded of what was said. He forgets that he said things sometimes as well, which can become frustrating because he demands that he never said what he said, or that I have what he said wrong. I never get angry, but it is very difficult, I must admit.

I'm here to simply have others to talk to. Recently, well, today actually, he relapsed and ended up self harming himself after 8 years of not doing so. He's falling so low, and I am desperately trying to be the rock and light for him, even though I know that isn't always helpful either.

I'm not complaining, or looking for pity. I just need others who can relate who can help me with this. Its been so hard to see the person I love the most fall down this deep dark hole, and of COURSE I don't know half of what he's dealing with. I know a lot will say "Well, how do you think he feels?". Ive gotten that before, and I DON'T know how he feels. All I do know is I'm trying my best for him and I just feel so lost. So lost to the point that I felt like maybe something like this could help me.

We of course do talk and communicate, but its to the point where we're both very overhwelmed and frustrated, and misunderstanding each other a lot lately. He thinks he's useless, and that he's just hurting those around him because he's unable to do the things he used to be able to do. And although I know I can't change that mindset, it breaks me up inside knowing he will constantly think that way for the rest of his life. He's just such an amazing person, who got handed a raw deal as a child, and as an adult. He was heavily abused mentally and physically, had a mother who passed away from a chronic illness as well, who half the time never believed him when he was feeling pained or feeling ill all of a sudden, and was also heavily abusive before and after her time of sickness.

I love him, so so much. Tonight, we had a really long talk about how he was feeling and how I made him feel, and how others made him feel. I wasn't sure what to say, so I tried my best to explain that I am trying to give my all; Physically, mentally, emotionally. Even though I don't have to, I WANT to. He deserves it! He sees so many spouses leaving their sick loved ones because they can't handle the mental weight, which of course is valid, but understandably terrifying for him.

All in all... I'm open to suggestions, comments, feedback, loving words, caring thoughts, etc. I just need others to open up to. Because I mean this in THE LEAST offensive/rude way possible, but I've finally broken with all of this. I have so many pent up feelings, and I had quite the breakdown tonight. A family member suggested I find a support group for people dealing with spouses or family members with MS. But this is the closest I could find that I actually trusted.

I hope no one is offended, or gets the wrong idea. If you've even read this far;

thank you. that means more to me than you know. <3

-Ari 💕

[Xvettech]

hi Ari and welcome! So glad you found us and this site. It is an extremely helpful place! Great information and great caring people! Seriously I didn’t think the world still had this many caring people in it! I so feel your guys’ pain. I was extremely frustrated when I didn’t know what was happening. I thought exercise could fix it. No. I was wrong. It helps, but things still got worse. I will never be my regular self again. That’s a really tough pill to swallow. So possibly he’s having a hard time accepting that. I did! I hope this place helps you and gives you the rock you need! It’s mine for sure! (Besides God & Jesus). I think he may not realize it but he is so lucky to have you! My soon to be X. Cheated on me and ran away. 8 months after diagnosis! Talk about devastation! But I’m going up now and yous will be too! I know you want to like now but it’ll (unfortunately) take time. Please lean on us whenever you need to! You will find inspiration and funny things here. I hope it helps you as much as it helps me. Laughter really is the best medicine! Best wishes in all you do and all you’re dealing with! Ps: the heat (for a lot) is really horrible for the ms. Invest in good a/c

[cosmicwanderer in reply to Xvettech]

Thank you so so much, I actually didn't expect anyone to respond as kindly as you did. I am SO sorry about your ex! That's awful! Shame on them for doing that to you especially after your diagnosis. he definitely is having a hard time accepting it, so I am trying my best to be patient with that aspect of his diagnosis. I feel like he's definitely still in the grieving process, and so many people try to convince him there is no grieving process but there is. he's lost a lot of what was normal to him, I just wish I could help more. He's got a really good AC in his room and we make sure to keep the door closed at all times so he doesn't overheat. Because unfortunately the highest we've gotten out here in AZ is 115! its so hot

Thanks so much again for being so kind and open. I definitely want to stay here and learn, but also connect with you guys I hope you are doing well with your diagnosis and that your staying as cool as possible! <3

[Xvettech in reply to cosmicwanderer]

Thank you! There is a grieving process. You are so right! Most people don’t understand. It’s a loss. We grieve over other kinds of losses Why not this one too? It’s a big loss. Of everything that was once normal. You kind of feel like an empty shell. But eventually we grieve our own way and move on. We learn and we grow. You are amazing for helping him through all of this. It’s a real jagged little pill to swallow!

[cosmicwanderer in reply to Xvettech]

Exactly!! I try to explain that to people but they just don't tend to get it. Grief is such a heavy emotion that can come on from a lot of things. So when he started grieving, I didn't judge him for it or get angry about it. I knew exactly what was happening and just tried to be there for him as much as possible. And thank you so much, it means a lot! He means the absolute world to me, and I wanna help him fight this till the very end. It was absolutely a hard pill to swallow, really difficult to see him go through all of this. All the pain he has to endure, and the mental strain it causes ontop of the mental health issues he already has going on. He's definitely got me by his side. Even if we were to ever breakup for some reason, I would still want to stick by him and help him. Going through this alone must just be the absolute worse thing and I couldn't imagine someone not being there for me if I had to deal with disease.

[Xvettech]

Pss: you will catch a glimpse of falalalala’s cats. They are awesome looking and full of antics. She’s got a great sense of humor herself! Enjoy!

(Thank you falalalala for making me smile)

[Farmerboy]

Hello, and welcome I know where and what your partner is anxious about as an MS diagnosed person Relapse and remitting since my diagnosis in 2016. At 68 and my wife as my carer I don’t know how she will or would cope if I move into the next stage of my MS . You haven’t done anything wrong reaching out to the community for friendship support and just a chat I am sure members will be ready and willing to offer prayers and communication to you when asked for so don’t be shy at asking .

[cosmicwanderer in reply to Farmerboy]

Thank you so much, that means a lot truly. My partner also has Relapse and remitting, is there any guidance with your experience that you can give? I hope that isn't too weird or rude of a question to ask. Thank you for reassuring me about reaching out... I was very afraid to do so especially with being so young. Your very kind, thank you again<3

[Sunshine1932]

I'm sorry to read about your sadness and struggles.

May I suggest a book/YouTube by Dr Wahls who is a scientist suffering with MS. I should say she no longer suffers and her book which you can buy secondhand explains everything. Fantastic read and an opening to becoming well.

Also have a read about the connection of low vitamins and minerals connected to MS and especially B12.

Whilst conventional medicine helps and is needed I do believe an holistic approach needs to be introduced and followed for better results. All is explained in Dr Wahls books.

Good luck and much love to you ❤️

[cosmicwanderer in reply to Sunshine1932]

Hi there, thank you so much for the suggestions. I will most definitely look into those sources. My partner has been told about taking a holistic approach, and has been trying to do some research into that as well along with scientific medicine too, and make a healthy balance of both. Thank you for your support, appreciate the kind words as well. <3

[Chefejj]

Wow Ari I don't know where to start!So many things are happening in both your lives right now. I feel he's young enough to battle this B.S.if you stick with him. Its hard as hell to know how he feels both mentally and physically.I. I'm59and had to walk away from a 30 year career as a chef because of my fatigue and balance issues. I tried to use my other program to get out of my funk (AA)but still felt useless and not needed. Here's the kicker...My wife was diagnosed with Lupus about 5 years ago. My MS spared me from pain! It has given me a lot of other symptoms! Maybe he would like to see that others have it worse. MS has it's own name for fatigue and it's lassitude.look it up.So you take that plus bad balance issues, spacisity, and I am sure you have done your research... let's not forget erectile dysfunction, My nervous system can't send the messages to my penis so no matter what my wife does she thinks It's her fault! I have so many other symptoms that they are too numerous for me to type. What worries me most is that you mentioned he started cutting himself again... MS doesn't kill you but that shit will! I feel that that issue needs to be front and center. I feel that you are doing the best you can just get him to a therapist asap!the other things will come into play later. You can always respond to this.. if you or him were to get into a bad place. I will give you my email or phone number btw even though I had to retire as a chef.. at the age of 52 I went back to college and became a counselor so MS is not a death sentence and I am proof!

[Hidden]

Dear Ari, I was the sickly kid also, I had polio as a very young child and ended up having some losses in co-ordination and of depressed immune system and similar types of things you describe, I became a letter carrier and distance cyclist even continuing for 13 years after ms diagnosis . Life has been challenging but I have lived a full life and with the help of a loving wife and family overcome a lot best wishes Robert

[Ashleyac]

You are amazing. I would trade you in and get rid of my husband any day 😆 It sounds like you are doing everything right. I am lying in the hospital with a flare now, possibly sepsis idk I’m in LA I see the doc never nurses know little. I was diagnosed with severe depression and anxiety at 15 and have a very bad familial history of suicide to schizophrenia. Of course it is very difficult for him, but during these episodes it’s just as hard for you. Listen to Tupacs keep ya head up.

I also understand communication is incredibly difficult. I have been with mine for 20 years and we still don’t communicate healthfully. We actually have been separated (still under same roof can barely afford it) for four months separate bedrooms. We are very respectful to one another for the most part because we still love each other that will never change, and for the girls. It’s really really hard though.

I’m super familiar with AZ, I used to have a lot of family and friends from Havasu to Kingsman? And Pheonix of course. I know it’s hard there too. I know you guys are in a similar boat as us with being on the younger side, with mental health issues, probably familial history stuff, etc. making it damn near impossible to be treated with an ounce of respect from any of the 100 docs.

It sounds like you have a huge heart and that is probably making this time that much more difficult. I’m sensitive too, I care so much, and it feels like it’s never good enough- ever.

The best of luck to you and your husband you will be in my thoughts 😊