@ChiMum 

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ChiMum

How Do You Live With Uncertainty?

Forgive me if I am asking a silly question....but how do you live your day to day life and make plans for your future when you have no idea how tomorrow will look for you. I was diagnosed in December last year and I had two significant relapses last August and November. I am starting on Kesimpta within the next month. My consultants say that my MS is highly active, rapidly evolving, severe and my prognosis isn't good. Hopefully the Kesimpta will help, but if not, I can have a stem cell transplant after a year. I am self-employed as a virtual assistant and bookkeeper. I have to work to get paid. I have no passive income and I have been declined PIP ( which I am going to challenge). Part of me wants to grow my business because I want to be earning more money, but part of me is too afraid to in case I get poorly again. I work alone, so if I can't work for my clients, then they will quickly go elsewhere and I don't want to get a bad reputation of being flaky after spending 13 years building my business. I am usually a really happy, cheerful and optimistic person, but since my MS diagnosis things have changed and the last week or so, I have been incredibly depressed. My husband was showing me holidays abroad next July for our 20th wedding anniversary. I wanted to book a holiday to cheer me up and I was just like what's the point? I could be in the middle of a flare up, unable physically to travel or in the middle of a stem cell transplant. I am currently having therapy once a fortnight for an hour. I have had one session and have another 5 to go. I don't feel that they're going to help because the counsellor has no idea what it's like. Going to bed at night and wondering what state you'll be in the morning when you wake up. Sorry for being such a Debbie downer. I am just in such a dark place at the moment. I feel that MS has taken a lot from me and has put an end to the future that I thought that I had. How do you get over that? Maybe this is a part of the process of going through an MS diagnosis but right now everything just looks so uncertain and so bleak. Since I was 15, I have struggled with anxiety and depression. I was just getting over that and now at the age of 41, when I thought that I would start living life for me, for the first time...wham! MS! It's just not fair that we have to life in constant uncertainty.
@Ele_122000

@Chimum Such a recent diagnosis, sounds like you're dealing with loads at the same time. The diagnosis that burst into your life just when you thought you could finally live for you, the new treatment, the uncertain prognosis, your work situation, life plans and fun, plus I'm sure family concerns. I think I would try and see this as a season for now (yes, perhaps part of the process as you say) and take things in small steps. And try and remember the small and big things that are good currently in your life. Could you plan a holiday for just after you've started Kesimpta? Or just after a flare-up? Sounds like you need a holiday - a trip :) Also, for counselling, do they have anyone who might be able to get what you are going through? There's lots of counsellors who are familiar with these things (loss, illness, existential concerns) and who could help you, but you need to find them I suppose.

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@Vik8

Hi, im only newly diagnosed too, was diagnosed in august 2022. I can really relate to how you are feeling as i felt this way too, these feelings started to consume me and i wasnt in a good place at all. I started to try really hard in adjusting how i thought so that i wasnt looking negatively about the future. Even the most healthy people with no long term condition dont know what tomorrow will bring, anything can happen. Its all worrying about the what ifs so now i think well what if that doesnt happen? Then i am worrying for no reason. Its taken me a while to change my thought process but what has really helped too is taking some time for myself for example having a nice relaxing bath, i started yoga (this is fab at helping your mind but also your body) and i’ll go for a nice walk and take in all the beautiful surroundings of nature. I was a very busy person before this diagnoses and find taking this time for myself helpful. I started kesimpta a couple of weeks ago and ive heard great things about it, you will get through this, things will get easier to cope with, find what works for you and allow yourself to grieve and process everything its perfectly normal to feel this way its a big thing to take in, if ever you want to chat feel free to pm me x

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