A little about my story
I'm finally typing this out. I apologize for the length.
I just signed up for this Ap, and want to vent about life a little bit.
I got diagnosed with RRMS in 2022. Although like I'm sure most of you, I was struggling with mysterious symptoms for years leading up to it. My left hand went numb, like for good so far- my balance got messed up frequently, like turning when I was walking, getting through a doorway without bumping into it. Weakness, dizziness - especially when I would try to work around the yard or house. Like I would get going, and into a rhythm and then BAM I would start feeling dizzy, unbalanced and tired all of a sudden.
I didn't know what was going on, how had I become weaker? I've always been active, always working in the yard or around the house in some way.
Eventually I noticed my vision wasn't right. When that became more obvious I realized I had been for a while, cocking my head to the right- especially when watching TV or something. I didn't realize I had been compensating for this slow emergence of overlapping or double vision.
Rewinding just a bit: when my hand went numb, I was referred to have a EMG test , to investigate potential carpal tunnel issues. The test did show enough evidence that there was a restriction in the tunnel and I was referred to a hand surgeon to have carpal tunnel release surgery. So I eventually got in for the surgery (this was peak covid times) and after a fair amount of recovery time, my hand was still NUMB. I did notice that there were a few pains I would get when trying to grip something that were gone,but the numbness persisted, had another EMG and consult with the hand surgeon and he reported that the restriction was corrected .
Fast forward back to the eye issues . My vision was basically double/overlapping constantly. I saw a eye doctor, who called in another Dr who examined my situation and asked me a few questions - one question was, "have you experienced any numbness anywhere on your body?".....
" Umm YES, my hand has been numb for (at that time at least a couple years.)" He told me that he was going to contact my primary care Dr - and that there were a few "syndromes" that came with eye issues and numbness .... I think he had an idea of it being MS , but wasn't going to say anything about it. I end up getting a call from my primary that night and he wanted to schedule an MRI for me that week. Got right into the MRI, my first time in the tube, and it was the next day my Dr called and told me there was a reason to refer me to a neurologist. Went to see the neurologist and was told I have MS. They showed me my scans and pointed out the lesions and explained how scars or lesions in different parts of the brain and spinal cord would effect me in different ways. My symptoms finally made sense, a relief that quickly turned into grief.
I had just moved into a house that I just had built on some family land with my girlfriend. I was lost and scared.
My girlfriend was sympathetic, and rightfully concerned about the future.
I kept working - I did take some FMLA time off and was put on a course of high dose steroids which helped my vision, its not perfect, but it's better .
I continued working at my job, it wasn't a super physical job, but it came with enough stress to make it really difficult. Especially since the job required me to be on call every few weeks or so, waking up in middle of the night by the work cell phone to any number of emergencies that needed to be dealt with immediately. It was too much. Not to mention my anxiety, depression and apparently anger was increasing, and I was really having a hard time with my boss , I don't think they understood what was going on- I honestly didn't know what was going on. After an argument with the boss(es) about trying to be forced to work on days I wasn't scheduled I lost it - went out on sick time and looked for another job
Found another job, same type of gig but doesn't have the on call requirement. Much longer commute, but Im generally happier. When work is done for the day, it's done - and I don't have to think about it or worry about the phone ringing and calling me back in the middle of the night .
I was unprepared for MS- as if anyone is prepared. I didn't know anything about it, and when I started learning about it, I really just thought about the physical issues - I never got into many accounts of people having hard times mentally.
I really wish there was some sort of counseling following the diagnosis that would have prepared me for the mental side or explained issues I may have been having.
I was seeing a therapist and still am. I started seeing a therapist years ago, as I was having issues with anger and depression. So I haven't been without a counselor - just not someone specifically for MS issues (mental)
I have a wonderful supportive family that I could not be where I am without them. My new coworker has honestly become one of my best friends, we have more fun together than Ive ever had at work, and it is exactly what I needed.
My girlfriend, who was so concerned about the MS and supportive at first, just broke up with me. I'm devastated. We had been having a difficult time for a while - and yes my depression and anxiety and anger were contributing factors.
We had been together 15 years. My anxiety really kicked into high gear when her and a friend she made at work started going to the gym together - her friend was a older, married guy. And they apparently got along great and have so much in common. She even told me that she felt like she's known him her whole life. But I was silly to feel threatened or jealous, but of course that's how I felt. And I couldn't control it - so every time they had plans to go to the gym after work - which was at least once a week, I got so anxious most mornings I would throw up.
But according to her, this was my problem to work out, and she wasn't cheating, they even took a day off together to go to a gun range to shoot guns (something I've never been into, but she had done years ago before I met her), and after that went shopping at a music store, and then out to dinner!!!? But I'm overreacting right?
So anyway, this all led to more uncontrollable anxiety, depression and anger.
We were even going to couples counseling at the time, but it seemed obvious that she wasn't committed - she almost used the sessions to highlight moments when I had been angry or depressed and how it effected her.
So we're broken up, however - she has no place to go, she's put a bed in the one spare room I have and is just living at my house until she finds a place to go..... everything is unaffordable for her alone tho, so it might be a while
In the meantime - I'm living with so much extra stress. We weren't married, but when the land was deeded to me - we were in love, and I stupidly included her name on the deed to the land, and even though I alone secured the mortgage - because she is on the deed legally she is entitled to half the equity value or something like that - as terrible as I think she's been, she has agreed to slightly less money, and to not involve the courts or anything.
But it's still a lot of money I have to give her when she finally leaves (with our dog too BTW)
So here I am, almost 44 years old , dealing with MS, alone basically (i do have my family luckily and a few friends) ... Oh i forgot to mention, one of my best friends who was there for me after this break up, waited 12 days to admit to my ex that he has always had feelings for her. She shot him down, and told me about it, so that happened, I lost the love of my life and one of my oldest friends in the matter of 2 weeks.
I don't know what else to write, thank you if you've read this far
It’s going to be ok . It just takes time. Change your diet and you will be able to do well again and find another girl friends. There can be darker times but the brighter days are coming soon. 20 Tips & Tricks to Tackle Depression in Multiple Sclerosis" on YouTube. Podcast done by Aaron boster. Watch "Multiple Sclerosis Vlog: 5 Tips for the Newly Diagnosed" on YouTube. Podcast done by Aaron boster
You are going through a really bad time & I feel for you. I wish I could say something that would make you feel better but I know that's not going to work and just sound trite. Please hang on in there. Whenever I have gone through bad times in the past, I had a mantra that kept me going - "this too will pass". No matter how dark life feels, it will eventually turn round and get better. I truly things improve for you - remember you have your family & loyal friends. And we are all here for you. Take care