I am surprised to find myself writing this, but there is a lovely, positive side effect of living with MS. Honestly! Of course, it goes without saying this is apart from being in touch with all the fabulous MSers I’ve met through meetings, Twitter and the blog.
I wandered round my favourite charity shop yesterday and picked up a whole pile of books. Regular readers will know I adore reading and am in the middle of setting up an MS book club – Reading Between the Wines. So I took them home, stacked them neatly on my bedside table and sighed, blissfully. So many books to read. It only cost me a few quid, but put a huge smile on my face.
This got me thinking. Pre-MS, my focus was wide and long-term. I would plan my career, The Teenager’s education and hobbies, my studies, my ambitions, my fears, etc. Unwittingly though, I skipped over all the small things that make life so pleasurable and worthwhile. Now, even though I still plan long-term, MS has also narrowed my focus in unexpected ways.
It started with the daily grind of getting through each new relapse. Life suddenly zoomed down to whether or not I could get off the sofa. Anything else was incidental. Would I be able to walk down the street without tripping? Would I be able to cook dinner? Could I manage to put the bins out?
But then something strange happened. Every time I was able to do something small, I felt a huge sense of achievement. Which is rather sad, as often it was only something as simple as making beans on toast, or navigating a wonky trolley round the supermarket. But I still celebrated the small stuff.
Since Alemtuzumab treatment, my relapses have stopped (touch wood). I still have bad days, sure. But what this focus on the small things has left me with is an almost childlike appreciation of things I long took for granted – coffee and a catch up with a friend, reading the Sunday papers from cover to cover, walking in the snow, fixing the mould in the bathroom.
My life has changed for ever, and however cliched it sounds, I really do now focus on what I can do rather than lament over things I am no longer able to do. So thank you, MS, and I really do mean that.
i was talking to another MSer the other day and she was saying that she pretty much has no side-effects from her MS – lucky her, obviously!
but she puts this down to her mental attitude – which is, rather than thinking about all the things MS has taken away from her, she concentrates on all the things it has given her.
celebrate the small victories, pick your battles wisely, and live in the moment.
this is why i think that the #mssucks hashtag on twitter is a bad thing – yes, it allows us to moan to people who understand (which is little more than preaching to the ‘converted’), but does wallowing in our situation actually do us any GOOD?
yes, MS sucks. but as the great US comedian Bill Hicks said:
“Four questions for you: Yeah? And? So? What?”
i think diagnosis obviously has similiarities to the stages of the grieving process, and i worry if ‘wallowing’ – whether it’s on twitter or writing on our blogs – is useful to us in getting to a level of acceptance with our diagnosis.
since my relapse last year, i’ve tried to keep my own blogposts “useful”, in some way – writing about what has helped and what continues to help me; and where the help can be found.
i think the attitude realignment you write about here is incredibly important.
(long comment for a friday morning – sorry!)
Hi Steve,
Thank you so much for your incredibly thoughtful comment – has really got me thinking (not a bad thing, lol!). You are absolutely right and I hope in my blog I try to show the lighter, funnier side of MS, as well as the naturally scary/anxious things.
I have gone from being a person with relapse after relapse after relapse and it was horrendous. Now, since Alemtuzumab, I have breathing space. I know I am fortunate but try not to harp on about it too much on the blog as I know other people are not as lucky/haven’t been in the right place at the right time.
I know what you mean about the #MSsucks hashtag. I hold my hand up, I am guilty of tweeting a few of them. I guess that’s why I wrote today’s post, to redress the balance somewhat! How about we get #MSrocks trending on Twitter!!
We’ve got to live with it, so I guess we should make the most of it. As I said to a friend the other day, we all end up getting something, at least I am young enough to adapt, be taken more seriously by healthcare professionals, and can change my life in ways which will ultimately make it better.
I do know there are seriously disabled people living with MS who might take offence at my post, but I speak as someone who’s father passed away in 1978 with complications arising from his primary progressive MS.
Phew, I had better stop rambling! I really appreciate you writing Steve.
X
thanks a lot, glad you got what i was on about!
i think your post was great and i don’t think you were being flippant in any way – but the most helpful thing to happen to me in the last year was doing a course of Cognitive Behavioural Therapy, so i’m well on board with resetting my emotional compass (or something).
this isn’t directed at this blog and i know it’s therapeutic to have a good old moan, but if all we (as MSers) do is moan, then it just makes it so much easier for people to ignore us – like you say, a lot of people have got it much worse, certainly worse than i have it.
I wrote about a lot of this last September – http://itsashitbusiness.blogspot.co.uk/2012/09/is-this-helpful.html
also, i wrote about different models of disability which i was told about shortly after a previous relapse – this really helped me to begin to recalibrate my own self-image (if you follow me…!): http://itsashitbusiness.blogspot.co.uk/2012/12/medicalindividual-social.html
another rambling comment from me – it’s been a long week, forgive me!
PS i’ve been guilty of #mssucks abuse myself but i’m trying to get better – #msrocks might be pushing it 😉
x
Hey there,
Oh, I am a total advocate of CBT- I think it is wonderful and would highly recommend all MSers to take a short course of six sessions or so – it really does alter your approach to life and MS>
And you are right, if MSers get a bad rep for moaning constantly, then we only have ourselves to blame when no-one listens to us.
Very, very good posts you attached, and am glad to see you’re not afraid to raise ‘controversial’ points of view – very brave of you!!
Know what you mean about #MSrocks- probably wouldn’t take off. Perhaps the best thing us MSers can do is spread the word that Hey, it’s not all that bad. Honest. There are far worse things that could happen.
X
So true I was so happy the other day when I managed to make my soda bread and it was yum! I was like a kid . Looking forward to the book club is it going to be on line? I too have a big collection of books I’ve bought in my favourite charity shop but sadly they are collecting dust so it might spur me on!
Hi Anita!
I adore soda bread, but never seem to have any luck making bread. Cakes, no problem, lol.
You have given me an absolutely brilliant idea – we really should do the book club online!!!! My friend is coming over next week for us to talk about how we are going to set it up and this point will be at the top of my agenda – thank you!
X
Fantastic post, and I love the idea of a book club.
I do spend far too much time worrying and not enough time enjoying: two things that are rather unable to coexist. So I, too, am trying CBT to get a grip on this anxiety. Very difficult, as a lifelong hypochondriac. Wouldn’t you know I’d get a disease w/ so many amusing and varied symptoms? 🙂
Like you, though, I try to share the funnier stuff (with a dash of “real life”) in my blog, figuring no one wants to hear me whine, apart from my husband. He ADORES it. hahaha
Hiya CrankyPants!
Thanks for your comment! So great you are trying CBT too – must look into it myself and give it a go, haven’t done it for years.
Have just enjoyed some haggis in honour of Burns Night, so still taking pleasure in the small (round) things, lol. Absolutely scrummy.
X
Hi – I’ve come this way via Steve (hello Steve!). As I posted on his blog, I’m i two minds about this “positive thinking” thing. On the one hand, it’s something that I practice wholeheartedly in my own life. I honestly don’t see what other choice I have. Curl up and die? Since my own first symptoms (2005) and my own diagnosis (2009), I have read a lot of MS blogs and it never fails to amaze me how people seem to define their lives by their illness. I blog, and occasionally I blog about my MS, but I also blog about what ever other stuff is in my head. I refuse to let this define me. On the other hand….. I am acutely aware that I have been “lucky” with my MS so far, and I am relatively lightly affected and am probably as fit as I’ve ever been and run half marathons and stuff like that… but other people have been less lucky, and it’s possible I might wake up tomorrow and have lost the use of a leg and be unable to run. That might test my positive attitude a bit. With that in mind, I’m inclined not to be too hard on the people for whom MS is such a factor in their lives that it’s hard to look past. I’d like to think I’d learn to live with whatever it throws at me and to stay positive, but it’s relatively easy for me to say now, and i feel for people who cannot currently feel that way. It’s a disease with a 1000 faces, isn’t it. Nice looking blog, by the way. I love reading too and don’t do anywhere near enough of it. Just finished “The Hunter” by Julia Leigh and just onto David Belbin’s latest, “Student”. It’s all good! Nice looking blog, btw.
Hi Swisslet,
Really appreciate your balanced comment and the lovely comment about the look of my blog.
I’m in a sticky wicket here. I have written a post for tomorrow, asking if we are our own worst enemies. I also realise I may come over as a hypocrite. Ok, I was diagnosed in May with highly active RRMS, and it was horrendous, but I was offered Alemtuzumab, an option not open to many (don’t get me started on the Big Pharma politics behind that story). And now, I have bad days in among the great days, but not relentlessly as before. So who am I to criticise people with MS who blog every single day about how awful MS is?
As I stated in a previous comment, in a way I hate MS more than a lot of people – it took my dad from me at the age of 35- he died from complications of MS back in the 70’s, when I was 4. With this in mind, I do try to stay upbeat and see the funny side to MS, the daily frustrations, the bizarre situations as I am living in a totally different ‘MS era’, with far more understanding, treatment options, etc.
Hopefully though, I blog about more than my symptoms. I rant about the media, make up, misogyny, celebrity chefs, etc. I try to encompass my life in my blog, not just a life all about MS. Anyone out there who disagrees, please, your comments on the direction of my blog are always welcome!
Anyway, yet again, I am rambling, and that’s without a glass of wine.
X
Hello. Don’t get me wrong. Not meaning to criticise you or anyone else. Is a debate I have with myself all the time. I hate to moan in my blog, but sometimes come out and look at what I’ve written and wonder how it came out so relentlessly positive, as I’m not sure that’s me either. There’s no right or wrong way and we all deal with this as best we can. No criticism intended and I didn’t read your post like that at all. Just adding to the debate. What are you reading at the moment, btw?
Hi!
No criticism taken at all – you made points very similar to my own! I’m in two minds whether to publish tomorrow’s post – don’t want it to be taken the wrong way. I went through utter despair pre and post diagnosis and was also dealing with a terrible work situation. Having come out the other end, I decided to (hopefully) write a balanced, funny, observant blog, writing about anything that interested me as well as living and bringing up a kid alongside dealing with MS, etc. Why does MS come along just as life is coming together???
I love a good debate though, as it broadens my own sometimes narrow perspective on things and todays comments have really made me think deeply.
I’m reading two fabulous books at the moment – ‘Consumed:How Shopping Fed The Class System’ by Harry Wallop (excellent) and ’59 Seconds’ by Professor Richard Wiseman (thought-provoking). But also have a whole stack of disposable novels by my bedside for those trashy moments!x
Post it. If you wrote from the heart and your own experiences, then other people might have views, but they can’t take that away from you. Do it!
You know what, that’s darn fine advice. Thank you! I will. Watch this space…x