I Don't Know What the Next Steps Are

Hi everyone,

I 27 F am based in India and got diagnosed 3 months ago. Within this time frame I have been on and off steroids, gotten a relapse, quit my job, and had my first Orcevus infusion. All in all it has been quite eventful.

I am posting here, because honestly, I don't know what to do next. I still have the symptoms mainly optic neuritis, numbness and tingling in hands, balance issues and fatigue. I have been prescribed steroids till the end of this month till I have my next checkup. My doctor has asked me to refrain from any strenuous activity or stressful work but has suggested I can start looking for remote or part-time jobs which honestly are very rare in my field.

I feel like all of a sudden, I need to tailor everything in my life around this diagnosis. I used to have a very active lifestyle hiking, boxing etc. and now I feel like most days I can't even get myself out of bed.

I have gained arround 10-15 kgs in the last few months due to the steroids, and have a lot of other side effects which the doctor tells me will improve when I go off meds. This is just worse and has added onto my already existing body image issues.

I guess I am just looking for someone who will tell me:

1. That the symptoms are actually temporary - the tremors and the numbness will go away.

2. At some point in life, I will not have to tailor my every decision around my diagnosis.

3. How does one deal with everything? I feel like I woke up one day unable to feel my legs and now everything has changed. It's like mourning for who I used to be everyday.

4. Do I need to do anything as of now that improves my chances? I am taking my meds, doing check ups and as of now doing light stretching and will start some physiotherapy once my doctors give the green light.

I know this is a very vague post, but I do not know who to ask. I joined the local MS society chapter but it seems more of an advocacy group than anything. I would love some support and just people telling me what to expect. I am very confused and honestly, I feel very useless at the moment. I have no job, no plan, no clue about what to do next.

Thank you for reading this and hope you are doing good 🌻