Last reply 3 months ago
New Plans

It was pointed out to me after my diagnosis that I should look for the positives.

At the beginning I agree that this was not the easiest thing in the world to do but over time it has become more and more apparent that the advice was not just good – it was the best.

It’s been almost ten years since that first diagnosis day and my mobility has, surprise surprise, become worse and worse. My positivity, though, has moved in the opposite direction and I’m now a different but far, far happier person. My future plans before that sad diagnosis day had revolved around walking here and climbing there – but as the prospects decreased dramatically I rethought those ambitions and focused instead on another quiet plan I’d mulled over in years gone past.

I wanted to become an author. Not (necessarily) another JK Rowling, but a person who created stories others wanted to read. I eventually completed a few and self published the results. It was all going nicely but un-dramatically but I wanted to get a little more serious about this new craft – and the more I worked at things, the more doors opened.

This month the result is a new publisher – Regency Rainbow – a new book – The Dark Side – and professionally deigned cover works. Next month two of my older novels will be republished with a few amendments and corrections, and further new novels are planned for publication in the months to come. I haven’t suddenly become the new Potter novelist, but the new book is selling well and finally I feel like a ‘proper’ author.

MS is NOT the end – it can be a new start, and just like every aspect of life for the able-bodied or the disabled alike, a little more application can bring rewards. I have the proof, believe me:

http://www.johnmoneywrites.com/home.html

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stumbler
3 months ago

@john333money , thank you for your encouraging message.

So, whilst the pen is mightier than the sword, it can also put MS in its place too.

I wish you continued success.


john333money
3 months ago

Many thanks, stumbler – and yes, that’s so true. I may not be able to follow the public footpath that runs through the gardens here – but I can describe it on paper! And maybe even change the details a little (or a lot…)


vixen
3 months ago

Thanks for this inspiration story @john333money. It’s only been 2 years for me and I’ve not managed anything quite so grand! But my way of thinking and tackling the world has been developed in a way that it wouldn’t have without diagnosis. All the very best for your onward journey 🙂


john333money
3 months ago

Thanks, Vixen – my own ‘proper’ journey began much like your current situation – lots of thinking about the world and how it works – sometimes. None of my stories, though, contain direct reflections of that process but it was integral in allowing me to create characters. The two protagonists in The Dark Side are opposites who work well together, and in other books I write of a disfunctional young man who somehow gets things right even as he gets them wrong (it works, believe me) in The Diary of Horace Wilt, and I write the stories of elderly people as they grew through their middle years.

Most of all, though, I write – as simple as that. But I write of characters born of my own way of thinking deeply about the world and how they tackle the problems they face. In one planned book a character will be suffering from MS (my new publisher thinks it’s a great idea, anyway) and to be honest, that one idea will probably take more thought and consideration than anything I have tackled to date.

But we fight on – and perhaps that will be the central theme for that character – and that fight is what makes the new me, the new us. MS really and genuinely is no ‘end of all things’!


potter
3 months ago

Congratulations it is so hard to get published! When I was diagnosed I started working in my pottery studio more. I wasn’t going to let this disease take working with clay away from me. It has been eleven years and I am still working in the studio not quite as many hours but at least 5 hours a day including weekends. I lost the ability to throw on my potters wheel when I was first diagnosed. My right arm wouldn’t work the way I wanted it to. I tried to retrain my brain and learn to throw again but I had a old kick wheel and my leg couldn’t kick it fast enough anymore. A friend found a good but cheap electric wheel on ebay for me, it was a local pickup so I could check it out before handing over the cash. I started retraining neural pathways and my arm the first of January and so far it is going well. I have been making tiles, murals, fountains and hand built pots for the last 10 years. Throwing isn’t a skill I need to work with clay, it is a skill I didn’t want to lose. A new mural design came to me at a concert last week, I have started working on it. Busy Busy Busy. Denice


birdboy
3 months ago

How excellent, well done!


dramaqueen
3 months ago

Congratulations.


poppy12
3 months ago

What an inspiring story! I’m just under 2.5 years into this journey, took the leap in autumn and moved back to my country of birth (Brexit + new-ish MS Dx + no family to back me up nearby = too scary for me).

Over here, I can’t continue the career I had build in the UK. MS, politics and some other stuff therefore pushed me to take a leap I’d never have been brave enough to take otherwise. It’s all still in motion but a path has started to appear and I like what I’m seeing.

Needless to say with stress levels receding, I can watch my health stabilising.

To all of you more recently diagnosed MS Warriors: Because of MS your life may end up different from what you thought it would be. It will nevertheless be okay, even if the path to “okay” can be difficult.

poppy


luvnlife316
3 months ago

I’m struggling, hard. I’ve had to give up everything I enjoyed and loved. My body will no longer allow me to do these things. The right side of my body makes it hard to walk and pick up any items. Prior to my diagnosis I was a nurse case manger. I won awards 2 years in a row. I was someone. Now, I am nobody. I’ve lost my identity. I have recently started Tecfidera and will be able to start PT,OT and ST on the 14th. I’m so tired of fighting. Fighting all the time. I can’t ever just relax. I’f anyone can give me any advise on how to treat my MS thru diet and other disciplines such as meditation, yoga, etc. It would be greatly appreciated. I could greatly use hearing from anyone who provide encouragement and knowledge in regards to MS. PLEASE. I thank you for any assistance. Yes, I will admit it, I’m scared out of mind and have never experienced this before. I thank everyone for their time reading this long post.


strictlysoca
3 months ago

@luvnlife316 As some of the people with MS have written here it does not mean the end of everything. It is terrible shock and turns our world upside down especially if you have to downsize the work but by allowing the world to turn then things happen. I’m never going to teach again, I’m never going to live for any length of time in my beloved island home but other doors have opened – I still support students, I’ve connected with other people and I can still do a lot of what I enjoyed. I’ll never play Mas (Carnival) in Trindad as it’s too much but I can still go on the road at Leeds for a bit with a wheelchair back up. I get photographed more than the young sometimes as a brave cripple. 🤣

Cry hard and swim. And yoga. I also did not realise that if you have rrms that when you get a treatment that works for you your body gets a chance to recover if you have the neural reserve. I couldn’t walk for hardly any time but now I’m fit enough to do 3 miles.

All the best


lightning87
3 months ago

Great way to look at life with MS. What an achievement for you, well done 👏🏼

I think MS has made me a better person. It’s made me go out and do things I might not have done if I weren’t diagnosed.


cameron
3 months ago

@luvnlife316 – first off, what support are you getting from your med team? IMO, if you are wasting emotional energy on fretting about aspects of your care, you’re on a loser. To cope with MS, we need to be as free as possible of other worries. So take a hard look at the people on your case. Any time-servers? If so, you need to make changes, even if that could be difficult to do. If everyone – from the GP to the neuro team – is tip-top and you’re still unable to cope, please consider asking for help in the form of antidepressants and/or counselling. It’s only when our head is in the right place that we can start dealing properly with the MS (again, this is just an opinion but based on my own experience). My own mental state was so poor that at one stage my neuro said he was more concerned about that than the MS!! The way I have coped is to base as much as possible of my time on enjoyable exercise. It seemed to me that the only positive thing open to me was to get fitter. Everyone agreed that this was the best way to stop deterioration, when combined with the MS meds. I am in no way a sports person, and the things I did enjoy (fell-walking, dancing, squash) were now impossible. I was introduced to a sports club with a lovely swimming pool and an even lovelier lounge and bar. Easy chairs, newspapers and mags, fabulous coffees and juices. I made it my business to go every day after work. The swimming both relaxed me and made me feel I was beginning to control the MS. I met new people – good in itself and interesting because these people were focused on feeling good and getting fit. Spending leisure time with people like this (of all shapes and sizes) was a very positive step, because gradually healthy living became the new normal. That was fourteen years ago but my take on life now is much the same. I’m now in an even nicer club and my original sports club acquaintances have become close friends. They’ve all got their own health issues and we enjoy eating, cooking and travel together. The MS, of course, never goes away but for the most part it stays firmly in its box. xxKay


grandma
3 months ago

@luvnlife316 You are not nobody, you’re a VIP, to you, all the rest of the ms community, all you’re friends here on Shiftms, we’re all friends you just haven’t met yet! I’ve had the beast for 26 years, got fired from my job for having ms. The law has changed and this should no longer happen. If you are employed and in the uk, your employer should make ‘reasonable changes’ so you should be able to continue to work if you want to. But don’t rush, you neednt do anything in a hurry, take your time, don’t stress out, stress is one of the worse things and can exacerbate symptoms and we have enough to deal with without making things worse unnecessarily.


mermaidia11
3 months ago

Hi @john333money I think that is an absolutely marvellous achievement and congratulations.

Hard work, tenacity, imagination and focus gets you ahead eh? Despite the MS – you are such an inspiration, and your characters sound amazing!!

I have been ill for many months with an antibiotic resistant UTI. I have used my hermit status to try write a screenplay – (Survey to follow!)

I am a third of the way through and it is the best distraction ever.

Did you know J. K. Rowling’s mum had MS and so did Theresa Mays!

One funds her own neurological centre, one doesn’t give a FF about the disabled of this country… I hope my children grow up better, and your family oh very proud of you, well done any thank you for sharing x

Thank you so much for posting and good luck for the future x

[email protected]
With respect, there is no keeping it in is box; there is no cure and it turns to secondary progressive eventually in every case. It’s all one illness

It took 22 years for me – without any DMDS FYI.

It is just about managable.

Would it be after 20 odd years of DMDS… ?


john333money
3 months ago

I just wanted to say a very big ‘thank you’ to everyone who has congratulated me, or who has found my post in any way useful as an example of what can be done.

To those of you who are struggling with the condition, please rest assured that you really aren’t alone. Some of us, like me, even create our own imaginary friends – a sure sign of madness… – or we refocus our lives to achieve what we can given how we are now differently able. The real point of my post was to highlight the fact that while MS changes us, changes what we can do both physically and mentally, it is by no means an end. It can offer us new opportunities – and we can still succeed and find new pleasures, new goals, new delights.

I consider myself a writer now – so much more romantic that ‘business analyst’ – despite the fact that I dare not try to carry a mug of coffee between the kitchen and my keyboard, and despite the fact that I can trip over things like strands of hair and sheets of paper… slowly.

We all suffer the effects in different ways but we can all triumph in different ways as well. Be it pottery (thank you for that lovely post @potter), writing, photography or simply sitting back and entertaining the children with stories or memories, we can – and should – find new things to entertain and delight us. MS is every bit the b*****d we now know – but it should never define us, and it offers us new opportunities for new kinds of success.

In response to my post here and to posts in other places – I’ve become a much more social media animal lately – I’m reworking the prequel to The Dark Side in preparation for the third novel in the series. This is to introduce a character who has begun to suffer from MS. Although it is not one of the three main characters she features heavily and it will give me a chance to highlight some of the problems that we need to overcome – on a daily, or even minute-to-minute basis.

Hopefully this is an example of our community providing one of us (at least) with a little inspiration – and I sincerely hope the result can be shared back with you in a few months.

Thanks to everyone for commenting, and I wish you all the very best.


cameron
3 months ago

@mermaidia11 – perhaps ‘box’ isn’t the best description for what I meant. I know MS is not curable and for a long time after diagnosis that thought was with me 24/7. Well, not just ‘with’ me but overriding every action, decision and relationship in my life. As I became better at managing the condition, I learnt to control my thoughts and focus energy into making positive changes. It’s not perfect control and I will always need to take antidepressants, but it’s sufficient to let me live my life. And thus far, it’s a good one. xxKay

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