Hi, I really don’t know whether this is the right place to talk about this, but I just wanted to see if anyone has had a similar experience. I feel really guilty. I am in the process of getting diagnosed, previous MRI has shown transverse myelitis, waiting on results for LP and repeat MRI. I feel worried about the future, I feel guilty because I have been letting myself get stressed and feel that has contributed to my symptoms, and feel like I’ve done this to myself. I also feel guilty because my MS symptoms so far are all sensory, and I know things could be a lot more severe, but still feel upset by the whole thing, but feel guilty that I am leaning on my friends and family and healthcare providers because I know it could be worse. Sorry for the long rant, I just feel pretty frustrated by my own reaction to it all, which I’m trying to work on, and wanted to know if anyone has experienced similar or has any tips on how to manage this.
Nothing to feel guilty about. Pretty nearly everyone would be stressed, dealing with the drawn out process of diagnostic tests, and wondering whether it is MS. That would be the case whether the symptoms are sensory or having an impact on function. Friends and family generally expect to support each other in difficult times, so use that support where it is willingly given. You’d probably do the same if the situation was reversed. MS often does start as just sensory.
During the period of the diagnostic stage it is very common to have two major concerns. Firstly the worry that it is MS. Secondly the worry that it may not turn out to be MS, or that there is no immediate diagnosis, so no name for what is happening, and that can make you wonder if you are a fraud. Both of these are pretty normal human responses to the situation. Not knowing is a difficult time.
Hi there ILiketomatoes,
Welcome to the Forum. I’m fairly newly diagnosed and can relate in some small way to what you describe regarding the guilt of being in the situation you’re in and the pressure on those people who are supporting you, but….Please don’t feel guilty, as Zoila says, people who care want to be involved, (it’s a tough time you’re going through even just undergoing the tests involved in pinning down a diagnosis, let alone the mind games you’re battling I’m sure).
I’m quite confident in guessing that whatever you’re feeling, you haven’t ’done this to yourself’, there are obvious signs that mean you need to go on this path to rule out some things, to follow up on other things and eventually to get a firm diagnosis to enable you to begin to understand what your future holds for you and your loved ones.
It takes time but with the support of those around you and the fantastic support on this forum from people who ‘get it’, then hopefully you’ll see that there is a way through it all and that the future (ok it might not be exactly what you imagined it would be), but it’s still worth working towards.
All the best
Dear Iliketomatoes
I do understand how you feel about your new diagnoses. I was out of my mind and picked on all worse scenarios but that has not served me any good. Everyone MS is different so is the progression of the disease.
I’ve had decided to change a lot in my life, what I eat, I ensure I go to bed at 9pm but no later then 9:30, I’m trying not to worry about things I can’t change, I am able to do things in my own time (I can do that as I’m living on my own), it is important to stay active, mindfulness and meditation. When my body starts feel funny, that’ show I call it, I put on some relaxing music, even with birds singing it tends to settle and ease by brain and body most of the time.
But you are already a lucky one as there is something, I do not have but you should cherished.
You have your family and friends who are there to help you. There is nothing wrong to ask for a help. If your family and friends did not want to help you, they would not offer any help at the first instance.
I will not pretend that life would be what it used to be but one thing I have leaned is to appreciate the good days, the days I feel normal (sort of me normal). Try and find yourself some hobby or interest to loose yourself in. My hobbies help me a lot. They keep me busy when I’m not working and therefore I do not have time to think or stress about what might happen because who really know there this road takes us.
Wishing you all the best and please, do not despair.
Gemini
Thank you so much for your reply. I will try to be better at accepting/ asking for help. It’s hard waiting but hopefully will know more soon. Thank you for making me feel less alone.
@Iliketomatoes That’s the main thing, your not alone, and stress ain’t good for our ms, so chillax and have a cuppa n a bikki.
AFOdriver