Hi everyone,
I hope everyone is doing well all things considered! I haven’t posted on the forum in quite sometime. Life has been very hectic. My MS has slowly started really taking over my whole identity so that is one thing I guess.
I honestly don’t know what I am here to type. Maybe just an update that I know, or hope, others can relate to. I find it wild that stress can set off our symptoms but that seems to be me all the time. Especially since my first scan towards this MS journey. I tried really hard to be positive- maybe to make it easier for everyone else. But when I had to finally start ‘treating’ myself…I began to understand how much this would just take over my life. I had that contrast scan and luckily no new lesions on my brain or spine so we went ahead with Ocrevus. Family stress never ends. My FIL fell and really got injured in the garden this past August. Fractured his neck and cracked his head. Came out of hospital needing 24/7 care and another unrelated wound he got from the hospital on the back of his head. My husband had to leave his job to take care of his dad. It hasn’t been easy.
In the midst of all this an opening for the infusion came. I took it. home life was really disturbed do to many other issues that I just cannot control or rather do not want to. When they warn you about toxic positivity- take it for what its worth!
I did feel horrible after the infusion. My MS symptoms seemed to go in extra mode. I also lost a lot of weight recently, not sure why and A LOT OF HAIR! All of which is very depressing. I get told off about the weight by my husband- him thinking its a game I’m playing or that I am just refusing to eat. I do. I eat more than before.
I am just really tired. Maybe this all is making me feel very isolated. Life is just not where I thought I would be or going where I want it to go. I mourn who I once was- even if I wasn’t happy with that version. And I do not look forward to who I might become. I’m tired of explaining every time I feel like crap- why I feel like crap. Because even though I was diagnosed last year- I felt like this for years and no one paid that much attention.
I don’t know. I know I am very much going through depression. I am trying. Maybe we just ignore this. Chronic illness sucks but being from an Asian background with all those expectations, double standards and judgements makes it worse.