Hi all,
Honestly this year i had such big plans. I was going to buy my first flat and learn to drive! I feel though that 100% of my brain power is taken up by waiting for appointments, meeting doctors, having tests and generally being sick. All my plans have been indefinitely postponed. My life feels on hold until i get closer to a diagnosis.
Has anyone else experienced this? Has anyone managed to get back on track with big life plans (and how!!)?
Hello! @Mars1989
I’ve been in a similar place for 8 1/2 months now. Before all of this started, I was looking forward to wedding planning, and had finally decided on where to take my first overseas trip. My diagnostic journey has effectively paused both of these plans indefinitely. I’m supposed to be getting married next March, but the only thing that’s been on my mind is whether or not I’m going to be okay. It’s such a surreal sensation to feel stuck in time, and I wish we had a crystal ball to take a peek into the future with! Here are some things that have helped me, and maybe they’ll be able to help you too.
A big one for me has been to remain in the present moment for as long as I can, and trying to adjust plans as needed. I may not know what my body will be capable of in March, but I do know that I love my fiancé, and I’m tired of waiting for things to get better before I can be happy. We’re discussing plans for changing our venue to a more accessible space, as well as downsizing to a micro wedding to help us stay within budget. If all else fails, we’ve agreed to either go to the courthouse or elope! For me, the only thing that matters is being able to marry the man I love.
Going off of that, I’ve started asking myself what things truly matter to me in regards to events, trips, holidays, life, etc. Once I’ve figured out what matters most, that’s what I fight for. I can learn to be flexible with what I can do as long as I have the ability to keep the priorities my heart holds fast to.
I would also recommend finding a therapist, since it can be helpful to talk to someone who is able to help more effectively tackle any negative thought patterns/beliefs you may have. They can also help you to build an array of effective coping skills to help you navigate through difficult times on your own if needed.
Of course, building a great support system can also help you to keep moving through life. I’m not great at making friends, and am usually quite shy. However, I’m going to a former colleague’s house tomorrow for a movie night with her and a few of my current/former coworkers. Will I enjoy myself? I’m not sure, but I hope so! I do know however, that I’ll never be able to make friends and supportive connections if I don’t open up and let people in. That’s
Before my nerves went haywire, I had complete confidence that I could be content spending my life alone. While there may come a time where this statement is true again, going through hardship with only one or two people to really confide in and seek support from was/is hard. I felt like a burden for putting all of my fears on my fiancé’s shoulders. It’s been hard for him too, mostly because he feels helpless watching me get stuck in my head over and over again and doesn’t know how to help after a certain point.
Finally, acknowledging that what you’re going through is hard and letting yourself feel things fully. I struggle with bottling up my emotions, and all this does is make me eventually blow up (usually over something that had nothing to do with my original fears/thoughts). I don’t know your situation fully, but I know firsthand how difficult and frustrating the diagnostic process can be. Try to find joy when and where you can, but always give yourself kindness and grace when you need it.
I hope this helps!
C
The feelings you describe will be familiar to many of us – me included. MS, or symptoms that may or may not turn out to be MS, tend to arise in young adulthood, when we are just getting started and establishing ourselves in the grown-up world - building long-term relationships, careers, families and so on. It’s very tough.
Hi Mars. You say your plans have been indefinitely postponed and your plans are on hold. The period of waiting for a diagnosis is definitely difficult to deal with and if and when it comes a diagnosis can be very hard to deal with. It usually requires a period of ‘grieving’ for s future life lost and coming to terms with a new reality. I guess that yes, for a time plans do go on hold but after a while you adjust and continue making plans.
So my sympathies and best wishes to you but don’t assume that your plans have been postponed indefinitely