Hello. A perhaps slightly blunt sounding reply but it’s sent with the very best intentions and best wishes.
You do seem to be rushing ahead rather a lot! My full experience is as below but I guess I have the advantage of older age and experience.
Following an episode of Optic Neuritis i was diagnosed some 19 years ago with RRMS. Physically MS didn’t affect me much for the next 7-10 years (to be honest I can’t remember exactly but have a note of it) . Mentally and emotionally, and like you, it blew me over and I saw myself as becoming disabled within a few years and then confined to a wheelchair and living indoors. I was in my early 50s which is supposed to be particularly bad news - leading to faster progression of disability than when diagnosed in younger years! I told my then girlfriend of 4 years that I would fully understand if she wanted to break it off and live her life without being dragged down and restricted by something she never ‘signed up’ for.
It took quite sometime to get over the shock and horror of the diagnosis and to then go through a period of grieving for a lost future and loss of ‘ identity’ and self image. It’s something that I guess we have all been through and dealt with in our own individual ways. Slowly , however, I adjusted to the ‘new’ me and new life expectations.
I was working full time when diagnosed and continued working until by good luck my employer was looking to reduce the work force and offered a ‘severance package’ for anyone who was interested. I took the package .
Changing topic and Going much further back in time to when I was young and sent off to boarding school at age 7 while my family went to live in Asia and the Middle East , I know a little about feelings of being abandoned and, yes, it does leave a few scars which needed later talking through . Caused a few fears in my first relationships but I worked through the fear - counselling, a bit of therapy etc and came to terms etc.
Purely for the purposes of general chat, a one time girl friend of mine had a really tough background and young experiences. Her parent divorced when she was around 5 years old and for some reason her Dad got custody. She wasn’t allowed to see her Mum and after a year or two her Dad sent her off to some pathetic excuse of a boarding school : a couple of old women in a large town house. As she got older she returned to live with her Dad, got pregnant through a boyfriend who promptly dumped her, had an abortion followed very soon after, by her father throwing her out of the house and basically ‘disowning her’ and cutting all communication. Fortunately, her ex boyfriend’s mother took her in. How she managed to get through all that I will never know.
Anyway, back to me and MS. Well, it’s now some 18-19 years since I was diagnosed. I have some problems with my right leg which makes walking for more than 10-15 mins difficult if not impossible. A few other problems as well but nothing exactly ‘life changing’ - more inconvenient and a bit restricting. My girlfriend of 20 years ago ? Well we stayed together and celebrated our 10th wedding anniversary this year and are talking about an Arctic cruise next year or perhaps a few weeks in the Outer Hebrides.
I’ve mentioned all the above just to say that yes MS is the pits , it will shorten my life by maybe a couple of years and I’m not looking forward to life in say 10-15 years time if and when MS gets worse. However! I’ve enjoyed my life these last 18-19 years. With adjustments, I still do things - all the normal things like meals out, cinema, theatre, holidays , ‘walks’ in the country on my mobility scooter and so on…
So, don’t give up on your life and dreams! When I was diagnosed I think there were just 2 treatments available. There are now many more and more effective ones !
MS is the pits and yes it does make everything that much harder including relationships. When we got married we had a humanist wedding which means we could write our own ceremony and importantly, our own vows. My vows included ‘doing everything I could to take care of myself/to keep healthy’ or words to that effect - in other words I would do everything I could to deal with MS. Other vows were to always do what I could to be a good friend, lover , partner and husband. Having MS makes everything harder including being a good and supportive husband etc , keeping enjoyment fun and love in the marriage but to use that line from ‘Galaxy Quest’ : ‘Never give up, never surrender’ !
Life doesn’t stop with MS! A couple of years ago my wife broke her shoulder and for some 3-4 months I helped her dress, did all the cooking housework etc. And a few years ago, before my Dad’s death we would stay with him and e.g I would help him dress, shower, empty the night bag on his catheter and change his day bag every week etc.
So, life goes on and responsibilities and care for others doesn’t go away - might get harder to fulfill but they are still important. And just as your fiancé might be thinking how best to continue to love, care and support you, so too must you. Having MS, we just have to work that bit harder to live, care, love and support
My parents always pushed me to give my all in everything that I could do. While this has instilled me with an incredible work ethic, it also means that I frequently experienced periods of burnout/stress. I’m starting to understand that I don’t think I’ll ever get the support I need from them, and it hurts to think about.
