bonang1975 23/04/18
Last reply 2 weeks ago
😡

Hey all just havin a winge cause it just seems to get harder every day. From someone who ued to skateboard skydive snowboard and a heap of others to someone who cant wait to get home and go to bed or sit down it really can be depresing. I suppose i should be gratefull for the things i can do. Thanks all just winging.

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bullman
1 month ago

I know exactly what you mean. I used to skydive, bungee jump, white water raft and all sorts of crazy stuff. Now just sit and watch TV. Thankful that I did these things when i could.


mmhhpp
1 month ago

Hi!
I feel the same. You have had ms for a long time i think despite of bad things you are doing well!

I have had ms 8 years and i am pretty bad….😞


vixen
1 month ago

Hello @bonang1975. This is very dispiriting, I know, when the sofa and TV become your best friends. I only got diagnosed last year and have never snowboarded, or gone skiing and now obvs I never will, so at least you’re one up on me! At least you have it on your mental tick list of life achievements.

Leading a more sedentary lifestyle means that we all have to find new ways of being. That must be tough it you’ve been active, but at least it will give you the determination to get a decent physio plan. At least now you know you’re not on your own out there going through all of this x


Anonymous
1 month ago

You need to find your new, not hold onto your old. It’s tough, I think we would all agree on that. My life has turned around. Look inside, find your inner man, try something new, visit an all black church, take a few college courses. Face your fears.
I was diagnosed in 2003, went to university in 2006, graduated in 2009, woke up paralyzed from waist down in 2010, found My Church in 2013 and started to volunteer for Citizens Advice, got married in 2015 and started my postgraduate degree last year. Life is still there for you,a different life, but you don’t know what that life will be like until you try.


cameron
3 weeks ago

@brianputman210 and @vixen are right but of course there’s no formula for finding a new life. I think it helps if you have people around with the right attitude, but again, there’s no easy way to achieve that. It’s an odd thing, but some of what I enjoy most now has come about by chance. Ideas and new interests have sprung up as a result of reading/ internet and I’ve tried to follow up on them. A more sedentary lifestyle gives you the time to research and explore……. xx


chezy17
3 weeks ago

Hey.
Why can’t you still do these things? I’d still snowboard regardless, although I’ve done it couple of times and spent most of the lesson on my arse 😂😂! Gonna so a skydive too, it’s not going to stop me having a go at things and enjoying life. I couldn’t get up a climbing wall last month, was I bothered, not really as it was a laugh and I’ll have another go at it. I think we all focus on how we used to do things, heck I used to do Judo 4 times a week and compete at the weekends. Could I do that now, would I wanna do that now? Heck no I’m older and my life is different! Sometimes I think it’s more mind over matter and we’re fixated on what is was like before. Managing to actually be out, doing something is an achievement enough. I’m happy that I managed to actually load three bikes on my car to take my kids on a bike ride, that’s an achievement. You just change the goal posts, have different goals and try not to focus on what was but what is 😊.
On the more tiring days, the tv is my friend, I’m not very good at having these days but I do sometimes but somebody without MS will have these days too. 😊


tomlev
3 weeks ago

Spot on chezy17 😊 cheers


mermaidia11
3 weeks ago

@bonang1975 It’s not a whinge mate. I don’t detect an ounce of a whinge, you’re just sayin it’s depressing when things get steadily harder and you can no longer do the things you used to enjoy!
And bed is the highlight of the day. Whoo hoo. It’s rockhard-
so give yourself a break, you are only human mate!

Anyone who tells you it’s a case of willpower/mind over matter/determination/positive thinking blah de blah clearly doesn’t understand what it’s like to try and walk and balance on blade of grass legs, after having a skinful and being on a waltzer, with no sleep for a week.
…when having a shower and getting dressed, can feel like climbing a mountain … obviously you are less likely to want to throw yourself down a mountain or out of a plane.

It’s also not as safe, (or as enjoyable on any level) if your eyesight, energy, balance, waterworks and spatial awareness are compromised

You need that energy to eat and exercise, so high energy dangerous pastimes have to be prioritised.

While your brain is upset, it takes 5 times as much energy as a normal person to do anything.

It’s so hard getting used to this, and the process of adapting and prioritising is a never ending,soul destroying task. But it does and will get easier and it can and will be done by you.
Adapting is the key.
So you might miss this season on the slopes, but now perhaps you can get your adrenaline fix from a supercar race day? Or by playing a game of GTA?!

Forget what you aren’t able to do anymore without great cost, and focus on what u could and can do always – turn that pesky little voice in your head off with more inventive and manageable pastimes.

If you can’t manage action, go for distraction – is my personal strategy..
good luck and don’t loose heart, could be better, but could be a whole lot worse…


cameron
3 weeks ago

@mermaidia11 – I love your motto if you can’t manage action go for distraction. So true, because it’s when you’re distracted that the brain can get creative and start finding those alternatives. Wise words indeed. xxx


chezy17
3 weeks ago

@mermaidia11
GTA as a distraction…lmao I just drive around trying to see how many police cars and helicopters I can get to chase me, never actually completed the missions on that game 😂😂😂😂! Shooting zombies often helps too, but not when the kids are around 😜🙈!
Hope you’re doing ok chick? 😊


bonang1975
3 weeks ago

Thanks guys as usial you all know what to say. Basically i just ha
Ve to tuffen up and deal with it. I know just helps to hear it from you lot xxx👍


aabreu
3 weeks ago

I used to fly small poorly built homemade airplanes. I even became flight instructor and showed other goofy people like me how to fly. Now i get a lump in my throat thinking about the MS that has become my new all encompassing hobby. Glad I did the things while I could, but I’m not going to lie and say I don’t miss the old life I had.


grandma
3 weeks ago

I’m the one with ms but the other half was my carer for 20 years, he can no longer do what he used to because of age and chronic asthma but we have a train track in our garden, he’s the most fabulous engineer and we have a workshop full of drills and lathes which he can no longer use but he bought a 3 D printer a few years ago and now produces fabulous trains in the warm, inside, and seated so there’s ways round everything. Anyone want to come and play trains? We have an open day in early august for our local children’s hospice ( well at 62 and 68 we’ve had our life and they’re not even going to grow up) Garden is fully accessible for wheelchairs so if anyone wants to come to Trains & Tiger Lillies il let u know date soon😍 Jill


bonang1975
2 weeks ago

That sounds fantastic Jill 👍


sherryak
2 weeks ago

I started out being discouraged about all that I wouldn’t get to do. But I have finally gotten to where I can look back at what I did do & just be glad that I did it while I could. So now I have some excellent memories & I just look for the new things that I can do with my life. When I dwell on the past now, I just do it looking back fondly. I try not to let thoughts of “why can’t I now” invade my memories & joy. I now look back thinking “I’m glad I…”

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