It’s my first time here. Hope you are all doing well.
Doctor says it will probably be MS, so I am now obsessively looking for information and perspectives into the future. Although it is quite soon, I suspect I might have PPMS. I’m 34.
So far this forum seems a place of comfort and companionship. And I already thank you for being there.
In order to assume my possible future until it gets confirmed, I have a main question: is it possible to live a happy and fulfilling life with this, even if it becomes highly disabling? I have always thought that the important thing is that there’s always something, even in the worst scenarios, that can brighten days a little bit. Could you give me examples of things that people even in bad situations can do or at least experiment and that can give purpose and joy to the day? I’m talking about an advanced condition.
Thank you very much and a big hug to you.
There are many people on this site who have “highly disabling” circumstances. I will not presume to speak for others but from the posts I have read most of us lead a “happy and fulfilling life” Speaking for myself, I found the diagnosis very scary and thought that my life was effectively over. This turned out not to be the case. As time progresses, things have changed in various ways, but there usually seems to be a way to adapt to each new “normal” . You will learn a lot about yourself and might be amazed by how you deal with stuff. It will be easier if you have a good support team of medical professionals, family and friends, and there is a wealth of experience, knowledge, understanding and empathy to be found on this site.
All the best Mick
I have had this probably from 1999, diagnosed 2016. I am always finding things to do. I dont have time most days to do those things. I am older though 70 now so restricted with energy as a matter of age, but i have the joys of my wildlife camera, i write a newsletter for the sheltered pods where i live, gosh too much stuff and i am off in a minute to facebook to check my chicken groups lol.
life is what we make it. your still young gosh believe it or not at 34 i had gone on my own to corfu on one of those 30 year old holidays lol had a great time before i had MS. i do draw on memories when i feel down.
I think dont set your barrier too hight, start low and work up then you wont feel disappointed if you didnt quite get there.
Yesterday i spend half an hour watching mother and father starlings feeding feather pig offspring lol. xxxx hug back at you. x
great post Mick. x
CC. This was the sort of post I expected to turn up. nice one. We too have our own mini murmaration of starlings, eating us out of home, the can demolish a whole feeder of mealworms much more quickly than I can refill it! I am envious of your hedgehogs, but love that you can share the images. M
i have my channel wildlife and hedgehog junction. on you tube lol.
yes this morning i struggled but i filled all the fat squares, and added and shoved a load of calci worms as well, cleaned their water and filled seed holders lol, it was like a days work lol.
Here they come, all their feeder are kind of behind the greenary lol. later the tree will be awash of baby starlings they are slowly arriving now. must have run out elsewhere lol.
Hi Victo, I know its difficult knowing you might have MS but in answer to you question - Oh yes it is definitely is possible to live a happy and fulfilling life. I’ve had MS since childhood and I’m a pensioner now and have had a great life (and still have even though for the past 12 years or so I’ve been in a wheelchair). I’ve had a very active life - lived it as if every moment might be my last, I’ve climbed mountains, been a horse rider and animal lover, married, had children, had a successful full time career, travelled the world and lived in different countries - all with MS.
MS is a part of me and although I wish I didn’t have it - I do have it. I’ve dealt with the problems raised throughout the years and lived a happy life. I was pleased to survive my initial bout of MS which put me into hospital as a child for 2 years. At 4 years old I was given 6 weeks to live and sent home, with my parents, to die .
I’m a pensioner now so defied all the odds stacked against me . I have loved my life - what an opportunity to live life and be happy (even with limitations). I’ve never been offered Disease Modifying Drugs (DMDs), but love the fact that these are offered to people now to slow the progression.
So Victo be strong there are many possibilities open to you and still many life experiences to explore and enjoy. Life is good.
wow is all i can say.
what an amazing story of perserverance and endurance xxxx
cor blige i spelt that right first time its a MIRACLE lol. perseverance
came straight out of my head straight ha ha. xxx
Victo, it’s more than possible! Like the others have said, a lot of it is what you make of it. I went undiagnosed for many decades but have had blatant symptoms since I was 15. I went to trade school, worked for many years, married, had healthy children.
I reached the point about 18 months ago where I had to quit working altogether and go on gov’t Disability, but I’m having the time of my life! Yes, I have to rest a lot and can’t do as many physical activities as I’d like, but my days are my own now.
Like CC, I have more things to do every day than hours in which to do them. Mine aren’t nearly as interesting as hers, but I do genealogical research, email family and friends, play computer games, read a lot, and collect stamps. In nice weather, I sit on my back porch with a pair of binoculars and watch for birds and deer. CC & Mick can both keep the stupid starlings. I stopped setting out suet blocks because they chased away all the pretty songbirds and hogged everything for themselves! I do think it’s pretty neat that you have hedgehogs, though. Over here, they’re exotic and rather expensive pets.
But getting back to Victo’s topic: MS isn’t the end of the world. Yes, your life will change, but many of things I no longer do is because of my age, not the MS. You just have to keep things in perspective. Focus on what you CAN do. There will be periods of grief, but you battle through them and just go on.
and stamp collecting meet my brother lol. He loves both.
i HATE starlings they are a nightmare but if i try to chase them away the rest will follow so i have to double food up so there is more left when they have finished. I still get blue tits, and great and yellow ones and other birds. the starlings will slow down soon thankfully. I have a small feeder specially kept out of the way of the piranhas lol. they know where it is the sparrows and come to it everyday now.
I also have wood peckers which are hard to get on video. You can just see him/her tapping away i got him on my camera video.
My brother has gravitated to buying addressed envelops with special stamps some as far back as 1830, and he checks the address to see who lived there. He is great as he is giving me an interest too. For example the new one he got he went past this house everyday to work.
Brislington House in Bristol and the envelope was address to Dr Fox (the date stamp showed the original was deceased but he left 2 sons). the house became or was an insane asylum and they believe George III stayed there (erroneously).so he is giving me another interest lol as i love researching.
That’s really neat, CC! My daughter loves the envelopes, too, but I never considered researching the addresses. I generally only keep the ones that were mailed to people I know, kind of a cross between the stamps and sentimentality.
This is my favorite woodpecker (downy). It’s smaller than 12 cm long and is just the cutest little thing.
This is my least favorite (pileated). My son loves it, but I think it’s just ugly. They’re about 24 cm and not as common around here, but every now and then I’ll find one at the feeder.
I’m not even going to attempt taking photos myself. Google comes in handy sometimes!
cute woodpeckers. Google images are great, but it can be satisfying getting your own snaps with a phone or camera.
Either way, thanks for sharing.
It is encouraging to see you happy and I make take some of those activity ideas for me. If I can do some of them in the long run I might as well be right.
Thanks theorising. It’s surely a good perspective
Thank you, it’s making me feel better
Thank you very much Mick. It’s good to know you have adapted. All the best,
No worries. It is a work in progress for me and probably always will be !
My neurologists last words to me after my first consultation were “just carry on living your life” I have and I will. Trying to predict your future will just effect your mental health and raise stress levels. It’s important to keep a healthy mind with a healthy life style.
Hi Victo, Welcome!