Hi there. I am recently diagnosed with RRMS, and about to start pregridy in December. I am trying to maintain a balance in my thoughts, to protect my mental health. I really can’t think of my MS 24/7. I know I have it, and I have accepted it 100%, but how can I have it without letting it define and consume me? In terms of my personality, I am who I am, the same person I was before the diagnosis. I still have a life, hobbies, and dreams. I still need to socialise, love and be loved. How do you personally manage this balance in the way you think?
Also, I told a good friend about the diagnosis and I feel that he has become distant. I think that some people don’t know what to say to someone with MS. This incident made me feel abandoned.
My condition is here to stay. I take things one day at a time. I will lead a life with this condition, and I will make the most of every day in this world.
Hello Maria, can I just endorse everything you are saying and keeping that attitude if you can will only help.
Taking each day and living your life as best as you can (enjoying everything) is the way to go I feel.
I am not always on here, dipping in and out as and when but can I just the say the wonderful people on here have always been there whenever I needed their invaluable advice/help.
Take good care of yourself.
Hi, So I don’t think about mine every minute of everyday, but I do think about it everyday if that makes sense and that is simple because of how badly it effects me, I’m progressive MS, so never get a day, minute off all the symptoms I’ve got and I have had it nearly 18yrs, so is that the difference, I have a lady that comes to me to do my massage, she’s a therapist and she herself has RRMS and will admit it hardly effects her, a numb hand and a bit of nerve pain, so I guess if I was like that and could get on with life then I wouldn’t think about it. You try and keep going the way you are, we’re all different with this condition and it may never effect you like it does some others on here.
I just wanted to say thank you to everyone who has taken time to respond. It means a lot to me, to know that these forums provide a listening ear.
Hi Maria. An interesting question! Looking back then in the months after diagnosis I did think about it a lot or rather the fear , uncertainty was always in my mind. After a few months and other than my weekly injections I sort of forgot about it. I did however , try to learn as much as I could about MS and tried to find out as much as I could about lessening the effects. One of the things I came across was a book and website on ‘Overcoming MS’ . It’s about diet, exercise and meditation/ mindfulness. None of it is actually going to ‘overcome’ MS but it could help your body and mind in dealing with it and, in particular it makes me feel that instead of just relying on medication and waiting for MS to take its course there are things I can do to help support mind and body. So, in some ways MS is always on my mind I.e in thinking what I can do to help myself. It’s now sort of second nature
Hi, I was diagnosed earlier this year and I’ve had similar thoughts. How do I live my life now, with this huge “thing” on my back that I know is likely to take me severely downhill one day? I’m also lucky to have few symptoms at present - still enough to give me a daily reminder. The overall impact on my life is likely to be so great, I can’t just “forget” it. But like you, I don’t want to be defined by MS.
There are different ways to respond. I did a lot of research at the beginning to find out about the condition, using reliable sources (MS neurologist websites, peer-reviewed research). This has helped in that firstly, it has made me change neurologist and do several other things to improve my chances - I wanted to feel I was doing all I could. Also, listening to researchers can make you feel more positive and hopeful… perhaps too much so. Researchers always want funding, after all, so they are likely to talk optimistically.
Having said that, research and the battle to access healthcare has made having MS seem like a full time job. Luckily I do also have a proper job, though it is suffering as a result of my preoccupation. I really want to get back to doing what I used to do… I suppose we have to make ourselves go back and do the things we enjoyed, if and while we can: it’s all the more important now. I try to take an interest in current affairs and things not to do with me/my MS.
As for the reactions of other people… they can be annoying or can make you feel even more lonely sometimes. “Abandoned” really sums it up. I’ve had people essentially trying to blame me for my MS, or assuming my MS will be like the MS of someone else they know, or saying things along the lines of “we all die of something”, “we all get ill”… Some people simply refuse to accept my diagnosis, implying I am making it all up. That’s the worst reaction.
Someone pointed out to me that reactions might be driven by other people’s feelings of guilt, or their own fears, or simply fear of saying the wrong thing. It’s a bit like how people avoid you if you’ve had a bereavement. Maybe you could confront the issue head on by spelling out to your friend what having an MS diagnosis is like - and how valuable support could be?
You are right. I think I will eventually get used to it. Maybe it’s easier for me to simply remind myself that I was born like this. If I start overthinking about what caused it, what went wrong, etc, I will feel guilty (e.g. because I had mono in the past) or start blaming others unnecessarily (e.g. my dad who smoked throughout my childhood, my mother’s side of the family who have autoimmune diseases, etc). We really cannot afford overthinking what may have caused it.
Wishing you the best, and thank you for your support. Your words make perfect sense to me.