Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
Shirl

It's never too late...

8 posts in this topic Last Reply

Recommended Posts

Sluggish
Shirl

I was reading some MS news and I thought 'it's all too late for me'. Then I remembered how HARD I've been working on my negative tendencies and how SUCCESSFUL that has been, so far... :think:

 

MS challenges us every day. I won't even pretend to understand what you are coping with but:

 

have you aspirations for

  • new and old hobbies
  • small and tall hurdles
  • time spent with others wisely and not so wisely
  • anything at all?

 

For me, it is now too late for an ascent on Everest, or Ben Nevis. The molehill on the common is off limits too.

Strictly Come Dancing will never call upon me but, to be fair, that has little to do with my having MS. I'm not famous enough and that's all there is to it.

 

However, a while ago, I challenged myself to learn how to crochet and was rather successful at that.

And I like to seek change by letting the powers-that-be know when their decisions affect me, whether positively or negatively.

I ensure I see the lady two apartments away regularly. Although she has loads of family who call in regularly, once she has recovered, she likes a quiet chat. And so do I.

I'm also allowing myself to be proud these days, having been brought up never to boast.

 

My thread is meandering but coming to its closure, fear not.

 

For me, it is never too late to work at being positive and to learn a new skill with whatever abilities I have left to use.

It is never too late to write a short story in one afternoon. Nothing to boast there, so far today.

I have made a list though...

 

What positive aims and goals do you have?


Edited by Shirl
I moved this to The Lounge as soon as written
  • Love 2


Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

Share this post


Link to post
Share on other sites
Nick

Good subject!

 

Quite a shock when you find you can't do things you used too.  Easy to look at the negative, hard to look for the positives in life.  But here's the thing, life with or without MS is hard, a struggle, that's a fact, and 'owning up to', that thought, makes you understand the need to create your own opotunites in life, which is where you get those positive feelings. 

So what of me?

I'm trying to be more forthright.  Calling a spade a spade, telling people the truth without putting things in cotton wool.  This is not to do with MS but just stuff in general.  Taking a good old Anglo Saxon view, simply say what you mean! 

Just doing that makes you feel good.

Changing what you do and discovering new stuff helps and staying with the community instead of ending up separated from it. This last part I do find difficult and as someone who was never that gregarious is difficult.....but I try. For a start I'm part of this community! 


Edited by Nick
  • Thanks 1

Just another Warrior...........

Share this post


Link to post
Share on other sites
Sluggish
Shirl
On ‎14‎/‎10‎/‎2018 at 10:30, Nick said:

here's the thing, life with or without MS is hard, a struggle, that's a fact, and 'owning up to', that thought, makes you understand the need to create your own opotunites in life, which is where you get those positive feelings. 

Quite true! When I was younger, this wisdom was not mine; now I am older, with less energy and opportunity, the wisdom feels like all I have... sometimes!

 

I've been reading a fabulous magazine called Breathe for over two years. It is not a glossy, no adverts, no frills. Just solid articles along the wellness/mindfulness/whole life thread. It might not appeal to everyone but it is helping/enabling me to live a positive life. When your body is not up to the mark, it is even more necessary to work on your inner life, isn't it?

 

On ‎14‎/‎10‎/‎2018 at 10:30, Nick said:

I'm trying to be more forthright.  Calling a spade a spade, telling people the truth without putting things in cotton wool.  This is not to do with MS but just stuff in general.  Taking a good old Anglo Saxon view, simply say what you mean! 

Just doing that makes you feel good.

A few years ago, this would have shocked me but not now. As a Christian, I swallowed the servitude/good to your neighbour thing but neglected the only have one life on Earth part. The best way to love others, I've discovered, is to love yourself first. Mind you, it took a drastic decision to get me here. Not earth shattering or illegal. I may write about it one day but first I will trawl back through my old posts because I may have touched on it then. Just don't, any of you, expect anything salacious - just interesting.

 

On ‎14‎/‎10‎/‎2018 at 10:30, Nick said:

Changing what you do and discovering new stuff helps and staying with the community instead of ending up separated from it. This last part I do find difficult and as someone who was never that gregarious is difficult.....but I try. For a start I'm part of this community! 

I think DH and I took this piece of advice in advance of your issuing it, Nick. We live right in the midst of a community. I can vouch for extra living if you need accessibility in an independent-living set-up, with 24/7 onsite care and a good mix of neighbours. 40 flats including 4 couples = 44 residents. Most of us are 'cared for' and, in the case of the couples, one partner/spouse is cared for and living with their main carer. Every other flat, 36 of them, have sole occupancy. The best bit is the lower ground floor (2 lifts in the building) where we have a communal lounge, dining room (mixed reviews), hair salon, launderette, and the offices. For me, it is going out without going out. Useful when MS gives me a hard knock.

 

And, yes, you are part of this community, Nick, and I am a prodigal part.

 

It is a quiet board but I'm looking forward to nurturing it back to full health.

 

I hope your house move is going well!



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

Share this post


Link to post
Share on other sites
Tired
PaulX

Sorry for being late to the party.

It seems my thoughts only turn to MS when I have had a glass or two or three or......

Anyway, I hear what you are saying.

 

Its a difficult one this. You spend all your energy just functioning and getting through the day. A hobby or quest can see a frivolous dream. 

For me it is getting out to see more live music. I used to, even with MS. But eventually it got to be a bit of a struggle. No longer could I drive halfway across the country, head bang and then drive back the same evening.

I had a brief spell of staying the night in hotels, but that incurs costs, money and days off. So the concerts stopped.

 

But that was then and this in now.

We have finally moved from the cultural wastelands of East Anglia to civilisation. We live in easy reach of Birmingham, Worcester, Gloucester, Hereford etc, so our options for entertainment have expanded exponentially. 

Top of the list for 2019 is to get out and about and have some fun. Bands, classical concerts and theatre. We are spoilt in that my new home town has a theatre complex with three theatres and a cinema. As a warm up we saw the Oyster Band last year.

 

I also wanted to get out and enjoy the countryside, in nice picturesque places. Now  have more scenery then you can comfortably shake a stick at, literally on the doorstep.

So on paper I have moved to an extremely MS unfriendly location, hilly in the extreme, but in reality I feel better then I have for years. Confirming my belief that much of MS is mental, in terms of symptoms.

 

So getting out and about and living life are my ambitions.

 

Paul

 

 

  • Like 2
  • Thanks 1

We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

Share this post


Link to post
Share on other sites
Nick

Paul,

It sounds like you have moved to a great place.  The few times I have been to Birmingham I've always loved it and the Countryside around that neck of the woods is wonderful.  I can understand your remark about the 'cultural wastelands of East Anglia', as a lifetime lover and resident of Norfolk, it is true that we have never had the kind of diversity you find in an area like the West Midlands, however that is just the way it is.  

I kind of took on board some of the mental aspects of MS when I was first diagnosed. One of the bigger problems then, was "what happens next?' This was of course, a question that could never be answered.  

You seem to have come to the same conclusion and instead of worrying about that, have simply accepted things and found ways around the physical constrains that MS brings.  In a weird way, overcoming those problems, brings a satisfaction and sense of achievement. 

It is true that its never to late!

 

Nick 

 

 

  • Thanks 1

Just another Warrior...........

Share this post


Link to post
Share on other sites
HairyPete

This is a fascinating thread and illustrates how MS sufferers can be pro-active in spite of the illness. I see this determination not to give in every day when @Shirl puts her mind to something, often knowing that the dreaded fatigue will kick in.

 

And it isn't just learning to crochet or visiting her friend "down the lane". Recently, she has spent hours making posters for events where we live; putting so much effort and energy into promoting my hair[sic]brained fundraising scheme, including producing flyers etc; joining my football team fans' message board to get the word out; keeping our photo files up to date (I leave her to it in case I ruin it all!).

 

These efforts frequently leave her shattered and she will "nod off" at the drop of a hat, but is so pleased with what has been achieved. It fully illustrates the one day at a time mantra and confirms that it's never too late, because there will be days when even getting up in the morning will require a monumental effort. But when those days descend upon you, you can look back at the day before and think, "I achieved so-and-so yesterday and I never thought I would". Well done me.

  • Like 1

Share this post


Link to post
Share on other sites
Nick

It's an interesting thing, this perspective, and I suppose you could say MS is indeed 'interesting'. Yet being on the "inside" is so different from being on the "outside".

 My wife, who is in the same position as you Pete, that is being the 'opposite half' of an 'MS Team', plays a very special part in being one of the few who fully understand the situation of their partner. That is not to say they may fully understand the MS, rather it is their understanding of the proper support needed. 

As somebody with MS, I am still learning, even after 10 years.  I still don't know where it's all going, but the big difference now is, that having changed things around in my life, working hard to concentrate on what is possible and what is not, I find that I have ceased to worry to much about how others perceive me and can now simply plough on with the things I want (and can) do.

 

So this morning in the rural wastes of Norfolk I am looking out the window and watching the different species of hedgerow birds, seeing how many different ones I can spot.  So far its Robins, Blackbirds, Great Tits, Blue Tits, Hedge Sparrows, Tree sparrows. Long Tail Tits, Crows and a few seagulls on the fields (not sure which ones)  

 

Nick 

  • Like 1

Just another Warrior...........

Share this post


Link to post
Share on other sites
Tired
PaulX
8 hours ago, Nick said:

 

As somebody with MS, I am still learning, even after 10 years.  I still don't know where it's all going, ...........

 

So this morning in the rural wastes of Norfolk I am looking out the window and watching the different species of hedgerow birds, seeing how many different ones I can spot.  So far its Robins, Blackbirds, Great Tits, Blue Tits, Hedge Sparrows, Tree sparrows. Long Tail Tits, Crows and a few seagulls on the fields (not sure which ones)  

 

Nick 

The problem with MS, as we all are too acutely aware of, its like Easter, as movable feast. You feel you get to grips with it, then it shifts its focus.

Having said that, the same maxim applies, you just have to suck it up and get on with it, as best you can.

I have missed out on events due to the MS or more accurately, my perception of the difficulties MS might give me. Well no more. From now on I will just do it anyway. Common sense will still prevail, but not just anticipation of difficulties. 

That's not to say there aren't days when I really can't be bothered, but they are not as frequent these days.

 

I don't see so many of those species of bird any more. Could be to do with living in what was an old quarry.

Crows, Magpies and quite a few birds of prey, including Peregrines, are the usual suspects.

 

Paul


We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×