Yesterday’s blog brought some thought-provoking comments, two in particular from Steve, who linked to a great blog post he wrote (read it here), and I spent most of the day mulling them over. Are MSers guilty of naval-gazing and deconstructing every single little symptom and therefore preventing ourselves from being understood by other people?
And I’ll start with the term ‘MSer’. There has been a huge amount of debate in the MS forums and on Twitter about whether it is ‘acceptable’ to call ourselves MSers. I mean, really. If we are pitting ourselves against each other in this matter, what hope is there for us? I use the term a lot. I think it is snappy, short and easy for social media. Whether or not you choose to ‘define’ yourself as an MSer is up to you, but don’t berate those who do.
I may refer to myself an MSer, but I certainly don’t live my life solely as a person with MS. It just happens to be part of my life, the same as being a mother, a daughter, a sister, a colleague, etc. Once you are diagnosed with MS, ok, you join a whole load of other people with MS, but they are all different, just as daughters, mothers and sisters are – they generally only have that one thing in common.
And yes, MSers can be incredibly guilty of dissecting and discussing each tiny symptom, blowing things out of proportion. Wait – before I get hate mail – I have been there (still am sometimes). I hold my hand up. Pre-diagnosis, I was a frequent visitor on MS forums. I was scared, bewildered, anxious and lacking in information, and often the forums made me more worried, not less.
I started this blog to show the funny, embarrassing and downright socially awkward side of MS, precisely because I was so fed up reading blogs and forums that were simply a litany of endless complaints. Who wants to read about that? If we want sympathy and understanding from other people, constant moaning is not the way to go about it. I know some of my posts are downbeat, but I hope the majority can raise a smile and an ‘oh, that happens to me too!’
We need to amaze people – ‘THIS is what MS looks like’ – ‘Hey, I’m still living, working, laughing, getting drunk, being happy’. Reach down to those going through the diagnostic process, befriend them and inspire them. Maybe then we can stop this cycle of despair.
TESTIFY – good stuff!
But from your tweet yesterday, I was expecting an ANGRY post – we’ll need to work on that… 😉
X
Hey Steve,
I know, I chickened out and re-wrote some! I need to channel my inner anger more, lol.
x
I have no problem with been called am MSer it’s easier to write than hello I have primary progressive multiple sclerosis , especially sclerosis if it wasn’t for a spell checker I doubt that I would ever get it right
Do I moan,yes, it’s my choice to if I’m in a mood.
Does MS put me in a mood yes but so does losing one of my socks (bloody dog)
Do I have a positive mental attitude, no because at 55 been asked if I have a positive mental attitude irritates the shit out of me,ask me am I dealing with my illness in a practical way the answer will be yes, it was the way I was brought up, get on with it deal with it.
I knew nothing about MS when I was told I thought I had yuppie flu,so I went on forums to find out and yes there were people moaning that it hurt when they farted so it must be down to MS. There were other people telling me I should ignore MS and run marathons, I had no intention of doing it before so I’m not doing it now.
The point I’m trying to make is you wade through that till you find the information you want or a little gem that makes you laugh like this blog. People are entitled to be themselves, deal with the ones you can get on with, politely ignore the others
Thank you for your time.
Hi Tony,
Your comment made me laugh out loud – couldn’t have put it better myself! And thank you for the compliment, am getting a big head.
I think you are right. Once you get diagnosed, you are faced with such a huge amount of information, a good portion of which is negative,but you go on through til you get what you want. I think I am getting to that point, which is why I tend to not go on the forums any more. I am carving out a little niche for myself, full of people I like and whose opinions I respect.
X
I loved yesterday’s blog – and this one too! And some really interesting comments made. I was dx in aug after a horrendous summer but am finally feeling normal (ish) again, about to start Tysabri, & getting so much pleasure from the simple things in life – working, drinking, running, having fun with friends and proving that yes, it’s scarey and unknown but isn’t that the case for everyone as they get older – ms or not – something will get us in the end so we may as well have as much fun as we can and make some good memories!
Hi Jenny!
Thank you so much for your comment. I’m so glad you’re starting such a great drug, I’ve heard brilliant things about it and quite a few of my friends take it.
Yup, something’s going to get us in the end, and to be honest, I’m ‘enjoying’ this transition stage and am finding I get soooo much more out of life, post-diagnosis. Things will never be the same again! Better to learn that now, than when I am old, drooling and banging on about the good old days!
X
Brilliant again!
I had a complete melt down yesterday but knew it so I was able to be calmer today!
I would love to write something and will have to work very hard to make it good enough for here!
My blog is still going, although I have yet to blog today. I will try and work out the address to send you :/
Sam xx
Hey Sam!
Thank you! Please, please send blog address – will add it to my blog page if you like too. It’s a very popular page!
And bless you, just write something as a guest blog about whatever is on your mind. Funnily enough, I haven’t actually written a post about going through the diagnostic process. Maybe I should think about doing that in case there are other people reading this blog and want to know that it’s not all bad. Believe me, May 25th last year, the day I got diagnosed, I could have kissed the neuro. Finally, I knew I wasn’t going mad. Well, maybe slightly.
And honestly, there are days I can’t write a word. Not a single word. Then something random pops into my head (see ‘Pass Me the Dinosaur’ post recently) and it makes me laugh, so I write about it. Even though it was a daft post about calling a work tool a dinosaur. It still kind of encapsulated the day I had, lol.
Look forward to hearing from you soon!
X
Just a quick note because I am on my way out for dinner with friends and will be eating drinking and being merry!!
I see what you mean about the whingeing on some websites it does get you down sometimes. I get very upset and angry sometimes too I think it is only helpful up to a point.
Two very good blogs I found them very good to read thanks yesterday and today. I will have to read them again to take all the information in as the brain doesn’t work as well as it used to.
But you’ve got to laugh! X
Sue. X
Hi Sue!
Thank you for the fab comments – the blogs recently and the comments have certainly given me a lot to think about. Cheaper than therapy! I really do think I have started to change the way my mind is digesting the whole living with/accepting MS but still getting on with life.
But you’re right – you really do have to laugh. Absolutely the best medicine.
Hope you have a lovely meal out – very jealous. Haven’t been out for ages and ages, but The Teenager is away next weekend, so fingers crossed!
X
Hi there,
Agree with much of the above and with yesterday’s blog and comments. Fascinating discussion.
I think it’s easier to read the MS forums and blogs neutrally when you have accepted your illness with its idiosyncratic vagaries and realise that every symptom described does not and may never apply to you. Of course, this can only happen some way into your (ghastly word alert) ‘journey’ when you have a clearer idea of how your land lies. Obviously easier if you had frequent relapses, as I did! Equally, it can be a gradual ‘breaking in’ process: ‘if X and Y develop, well I’ve read about it. ‘
I remember being terrified/saddened by some of the forums and although I was more knowledgeable after reading them, I had to find something amusing/light-hearted on the web immediately afterwards.
One of the joys of this blog (and others like: it’s a shit business and licking the honey- and I’ve just found swisslet-thanks!) is that it describes lives +/- MS. The lives of people who happen to have MS is more interesting and at the moment relevant to me- and I guess that depends on how they have defined themselves. But MS is unpredictable and I realise that this attitude may change if things progress. So those (at present) seemingly ‘moaning’ blogs may well morph into…..’Oh, look he/she has this and did that about it’. Journey, again?
Btw, an online book club sounds interesting.
Honeysucklex
Hey Honeysuckle!
As always, you’ve presented a new side to the debate, thank you!
You are right – when we are first aware that we may have MS, most of us frantically search the internet for information and plunge headlong into doom and gloom scenarios. I remember clearly being petrified after reading some of the posts. Disability aids? Incontinence? House-bound? Maybe that’s why the MS Society forums have a separate forum for those in limboland and those already diagnosed, but of course, don’t we all look at both?
I think now that my diagnostic process is over, the meds are in place, the MS team introduced, I can calmly survey the information, cherry-picking what I ‘need’ for the specific stage I am at. And yes, perhaps if my disability progresses, I will research that next stage, leaving this one behind, but I hope I can still pluck out the humorous side.
I’m getting more and more excited about the idea of an online bookclub – will need to look into how to link it to the blog. Leave it with me!
X
Hello again,
I think I’ve got my address, I’ve tried it and it works. http://samotter72.wordpress.com/
All my entries seem to be coming up as one continuous roll with today’s showing first.
Hope it works and if you read, please be honest. I’m so not confident with this but it is helping. No one has looked, yikes, it must be bad!!
Sam xx
Hi Sam,
Just checked out your blog – love the layout! Don’t forget to think about tagging words in your blog post – it will help you climb up the search ratings. I had an amazing woman help me set up my blog so if you need her email, let me know. She’s very reasonable, but brilliant – she set up the builder’s website too!
I will add your blog to my blog list, so hopefully direct more people your way. It takes a lot of time, but you’ll get there!
Your posts were really heartfelt, almost mirroring the hell that I went through. Don’t forget, there’s a fab MS community out there, and the last few blog posts and comments have hopefully showed you that life doesn’t stop with a diagnosis, in a lot of ways it can get better, daft as that sounds.
Stay strong Sam! X
p.s. keep in touch…
Hello again,
Just added your blog to the top of my list – let me know what you think!
X
YES! I’ve found many forums (which I, too, visited frantically post-diagnosis) to be disheartening. Really, I already was picturing myself in a soiled robe, screaming at kids to STOP PLAYING ON MY YARD, and waving some kind of walking aid at them from my bed. That said, of course, there are plenty of positive people on there, but the bulk of the comments left me more scared than I already was. Like you, I try to take a more lighthearted approach; it’s been lovely to find your blog.
Would you be willing to add my blog to your list? Any help in attracting an audience to my, er, misadventures is most welcome!
Thanks, and please keep us laughing!(But serious posts are, of course, fine too; after all, this is life — and life with MS — we’re dealing with.)
Ms. CrankyPants
Hiya Ms CrankyPants!
Your wish is my command – just added your blog (loving your most recent post and not just because you mention little old me, lol).
I’ve had an idea (dangerous). We should all set aside one day, date to be decided, where we all love-bomb an MS forum? Not to take the mick, but to focus on a limboland forum where we all post encouraging, positive replies to posts, showing limbolanders that there IS life after MS. Come on in, the water’s fine!
By the way, anyone else find the term ‘newly-diagnosed’ slightly creepy? I know there’s no other way to describe it, but I ALWAYS think of Beetlejuice and the book he gives the couple, the guide for the ‘newly-departed’. I told my MS nurse that and she fell about laughing.
I’m getting random now, so must pour myself a(nother) cup of coffee….
X
Many thanks for adding me (and the nice write-up)!
I’m midway through coffee #1, so obviously I’m impaired, but the idea of hitting the message boards sounds good to me. It’s not as if I have, you know, an actual JOB, so I can’t pretend to be too busy. Sadly.
It’s been ages since I saw Beetlejuice, and I hadn’t considered the term “newly diagnosed” creepy until now (I’m very susceptible to the power of suggestion). 🙂
Hiya!
We must organise it. I have also emailed the fantastic woman who is the font of all technical knowledge and who helped me set up this blog, regarding setting up an online book club. Watch this space! I’m so excited about it I am off to eat some toffee to calm down.
X