I’ve had a lot of good and a little bit of not-so-good feedback about my recent blog posts.
Some people told me in no uncertain terms, ‘Oi, you, stop joking about MS, how dare you? And are you not grateful/bowing down/prostrating yourself for all those who are fighting on your behalf, and if you aren’t, why the hell not?
Sadly, most of these comments were sent to me privately so I’m unable to share them with you.
I have never, ever joked about anybody fighting to find a cure for MS. They are all amazing people doing an incredible job. The only exception is fundraising by fire-walking. Personally, I still find it awfully strange when one of the most common symptoms of MS is heat intolerance. It just seems kind of…..bizarre?
When MS decided to strike for a second time in our family, I cried, ranted and raved and eventually picked myself back up again. I will be forever grateful for advances in medicine which allowed me to choose Campath, a choice my dad never had back in the 1970s. He was simply sent home with a walking stick and told to get on with it. He died when I was four, and the precious few memories I have of him are fragmented.
Why do I joke about MS? I think we all know MS is serious. We live with it day in, day out. So what’s wrong with a little light relief? Also, I joke about myself and my symptoms, no one else’s. That just wouldn’t be funny. Frankie Boyle, please take note. I just don’t understand people who think I should live a serious life just because I have a serious illness. Or is this yet another example of ‘disabled’ people having to conform to a rigid set of societal expectations?
I’ve cried enough over MS for now. It’s here, life has changed and I’ve changed with it. Like a lot of you, I no longer take things for granted and my life is in much sharper perspective than before. MS is a daily reminder of the fragility of life.
So, yes, MS is crap. It’s awful. Regular readers of my blog will know I address this in serious and more lighthearted posts. And I hope my little blog can bring a smile or make someone think, ‘yup, me too.’
Your words are your own and though people may not agree with everything (me on a previous post!) these posts are not enforced reading. I make jokes of my MS, MY MS. One thing I’ve learned is people will read words how they want and sometimes posts might as well be written in German, because their interpretation has been twisted and messed up by the reader.
Life isn’t a popularity contest!
I don’t write to be popular, I just write about what’s on my mind, jumbled as it is, lol.
To be honest, I really like getting feedback that makes me pause and think, always good to see it from different angles. Unfortunately the comments I had in mind when I wrote this post were sent privately. I wish that wasn’t the case and we could have had a proper discussion about them!
Anyway, I just wanted to explain my writing style!
[easy to say but] ignore these faceless characters who are consumed by their own issues. my family have dealt with alzheimers with similar black humour. this is a typical healthy british response to something which pains us deeply. it brings us together and relieves the tension of the moment. caitlin moran recently started a campaign to stop twittering for 24hrs and she also received plenty of vitriolic responses. stuff em all. this isn’t about them it’s about you.. 🙂
Thank you! I really do think it’s the British way. Enough of that stiff upper lip nonsense. And yes, it does relieve tension.
If I didn’t use humour, my son would be in a pretty bad way. We joke about it all the time. He knows it’s serious, but he certainly doesn’t need constant reminders.
I’m really looking forward to taking him to the MS Society award ceremony in London, so he can see how many inspirational people there are, who live with MS and those who are keeping MS in the spotlight and searching for a cure.
Seriously?! You write beautifully about what life is like with a crappy chronic malady like M.S. I think you’re right in some respects–this is probably another example of how the disabled are supposed to live in others’ eyes. We are supposed to be an inspiration to all with our can-do positive attitude and admirable fortitude. How dare we act human! @#$% that.
It’s also one thing for others to make a joke at our expense (which is not ok), and a completely other thing when we, as part of the group in question, express a little light-hearted self-deprecating humor now and then. That sort of “in” humor helps bond people together and gives them a feeling of solidarity. It’s healthy.
Personally, as an artist, I’ve been grateful to have a creative outlet to find humor in some of the absurdities of dealing with my illness, the medical establishment, etc. Humor helps make things seem more controllable and less scary. If you don’t manage to find something to laugh at in such a miserable situation now and then, you will lose your mind. It’s good for one’s mental health. I suspect that those who themselves have M.S. and take offense at some mild humor about its symptoms, as written by someone with first-hand experience, are not coming to terms well with their own situations.
I’m also trying to figure out what you’ve said that could possibly cause offense? Mallets? Heavens! I know the next time I fall apart at the store and turn into jelly-legs, I’m going to be thinking “mallets.” And it will probably give me a small wry smile and help me get through it. And I thank you for that. (Sorry for another long comment–you write such thought-provoking posts!)
Thank you so much Ellen!
I really enjoy your thoughtful comments. This whole pressure to be an inspiration really does my head in. As if having a chronic illness somehow means we should be martyr-like. Meh.
I think I know more than a lot of people just how much MS can rip families apart. My mum was only 28 when my dad died. I miss him every day. But what’s the alternative apart from to get on with life? Sinking into a deep gloom, being of no use to anybody, especially my son?
One of the comments I got (actually, it was many comments from the person) among others was that I should ashamed of myself for joking about something so serious.
Anyway, I am going to write a post about the Mallet Theory!
Also, wish I was an artist. I am so, so tempted to take my glue gun out the drawer and either make something beautiful (pasta stuck to paper?) or glue someone to their chair.
As the saying goes – “you can’t please all of the people, all of the time…..”
We all know how crappy MS can be and we all have our own ways of dealing with it. I enjoy your blogs because you say it how it is – for you, you do not take the mickey out of other people with MS but you do use humour and a lot of us (me included) can relate to your blogs.
If people don’t like it then they don’t have to read it! There are plenty of other blogs and forums out there to choose from……..
Very, very true. And thank you for the lovely comment!
There’s an MS blog out there for everyone. Don’t get me wrong, I’m not averse to criticism, just like to have the chance to reply!
I’m off for coffee with a girlfriend. Always a worry, worry about slipping, tripping or dropping my cup, lol. And I speak from experience!!
One of the main purposes of any blog should be to encourage debate and I’m thrilled to see just how far SIF has come in terms of reaching out to the wider community.
Such a pity that certain (critical) individuals don’t want to add their voice publicly – kind of makes me wonder how much they truly believe in what they are professing.
Enjoy your coffee & “catch up”!
Yup, am always open to constructive criticism, otherwise why blog??? I love the debates we have around certain posts and it’s always good to hear different viewpoints.
Coffee was fab – my friend carried the tray, lol.
dude, PRINT THE MESSAGES, dammit!!
although having said that, their MS is probably worse than yours… 😉
if i have a (constructive) concern about your blog, i worry that you find something to say about living with your condition most days – in doing that, despite the cheery tone (and frankly excessive amount of “LOL”s!), are you spending too much time thinking about your MS? doesn’t it get in the way of life?
– i know i’ll get shouted down by the legion of Stumblers (TM) for suggesting you post LESS…
you have created a great platform here (and you’re probably a shoe-in to win that MS Society award) but it’s a PUBLIC platform.
and i know from experience that the public can be arseholes.
I’m SO glad you raised this point, LOL. I had exactly the same conversation with a friend this morning. At the moment, I blog every other day, but maybe I should knock it down to every three days? I know what you mean, but I honestly don’t think about MS every day. Well, ok, I do, but it doesn’t dominate my thoughts.
I’ve been thinking recently that the blog will have to ‘move on’ slightly, especially now I have had the Campath treatment and my one year blogging anniversary is in September.
And absolutely, I don’t mind negative criticism at all. I can learn a lot from it, and anyway, I have a thick skin. I just wanted to answer the critics, LOL.
I was trying to explain to my friend that the blog is a thin slice of my life, obviously mostly centred on MS. There’s a lot I DON’T talk about. Hopefully the blog will evolve, and I think it already has. When I started the blog, I was being bullied at work, I had recently been diagnosed, etc. Now, I’ve won my case, I’m far happier and far more secure in the direction my life is going to take.
I’m rambling now, so will stop, lol ant thanks again for your honesty, much appreciated.
it wasn’t a criticism, just a concern – i know i could sit and think about MS all day every day – but it wouldn’t help me manage my health and ‘mental well-being’.
don’t set yourself limits or tasks (‘every three days’), just blog when you’ve got something to say – which will probably still be most days for you, but still!
like i say, not a criticism, just a comment from someone who considers himself a friend (although we’ve never met!)
and do you actually LOL when you write LOL? how do you get anything done?! how does the teenager stand it?!? 😉
Really nice comment, Steve, thank you! I too consider us to be friends. Lol. I don’t know why on earth I say lol so much. Must be a tic or something. The Teenager goes bonkers. Also when I say ‘totes’ or ‘mint’. But I think it’s in my job description to embarrass him, no?
The only reason I try to blog every other day was to give me some structure – everything else seemed to be collapsing, but sitting down and constructing a post meant I felt I had achieved something. Sounds a bit weird, but I guess I’m pretty gobby too with far too much to say for myself!
I was talking over coffee today about blogging – and I really do feel blogging has been excellent therapy for me, and at the very least, I’m not boring my friends rigid. (Lol should be here, but am holding back).
Your blog is my every other day treat. I have often found myself disappointed as I’ve clicked on your page only to remember it won’t be up til the next day!!
Humour is my way of dealing with most things and I have to say my Dad is the same and he has just come through cancer. We have literally been crying with laughter down the phone at each others experiences.
I refuse to conform to the seriousness of MS. The disease is all stoney faced and serious but I’m not. If others want to be fine, just don’t read this fab blog and try and ruin the vibe.
We should start an MS with a smile and giggle club 🙂
Thank you for the fab comment and also for sharing about you and your dad – that’s pretty amazing that you can both find some fun in a bad situation.
I know it sounds mad, but MS is the biggest part of life but also the absolute smallest, if that makes sense. I am way more than MS and maybe that doesn’t come through in my blog enough?
Your club idea is brilliant. We could hand out mallets as a membership gift, lol (apologies for Steve for yet another lol, lol)
My message to the person who has complained would be ‘It is ok that you take umbrage to this blog. We will all react to our life situations differently, none of us are right and none of us are wrong. But to attack someone for how they deal with their own situation is not on. Unsubscribe and move on, live your life in a way that suits you and accept that others’ will be different.’
I enjoy reading this blog and will be looking forward to hearing about what you have glued. Don’t think about it just do it!
That’s a really interesting point you raise, I hadn’t thought of it that way. I don’t feel I’m offending anyone else with my blog posts – just writing how I see it, as you say.
I certainly don’t consider myself to be speaking on behalf of anyone else!
My blog strapline is ‘a funny old life with MS’, and it really is. Just depends what way you view it, I guess.
Apart from my trusty but pesky glue gun, I also really, really want to make those candles in teacups. So pretty, but worried the whole vintage thing has had it’s day. Problems, problems! Or maybe I should take up decoupage or something. A creative outlet apart from blogging, and no doubt the pictures of my ‘art’ (ahem) will make for some pretty funny posts.
Yes your art could be funny but Ms Emin does well out of hers so don’t knock it! Lol
Don’t worry about things having had their day – I still have corn dollies on my dressing table, bought them about 35 years ago and still love them! There are loads of pages on Facebook that people have made to show off their homemade stuff, lots of inspiration on there.
Very true! I’m sure my mum still has some macrame plant pot holder thingies from the 70s.
I like browsing on Pinterest too, but get awfully envious. Far too many people with far too many stylish homes/accessories/kids, etc.
Another great blog keep doing what you do best and ignore the MS Police I think your blogs are great 🙂
The MS Police, eh? I think I’ve had this problem before. As someone else commented, you can’t please all the people all the time.
Am thinking up gentle, funny posts about anything apart from MS – Perhaps about how my cat can eat a whole bird in less than three minutes (but that’s not very gentle) or how much I enjoyed last night’s ‘Under The Dome’ even though it’s a remake of The Simpson’s movie. Or maybe I’ll start stamp collecting and pressing leaves??
I had the same reaction when I was blogging my clinical trial at http://gilenyaandme.blogspot.com . Some people found my positive attitude and the need to see the humor in everything as some sort of slap in the face to those who are suffering.
It could not be further from the truth. People deal with their life struggles in different ways. Those that use humor, in my opinion, are doing it with grace. We might not be able to change our situation, but we can chose how we react.
I choose humor rather than sorrow. Keep up the good work. 🙂
Thanks for your comment – seem unable to connect to your blog though?
It’s definitely a case of ‘if you can’t change the world, change yourself’, isn’t it?
Me and my family laugh about my MS all the time. Sometimes it overrides the frustrations I have of not being able to do some simple task and sometimes it’s just because we just find something funny. But you know what, it means I’m not crying or being miserable about the fact I have MS and there is nothing I can do about or control it. So joke all you want. It’s your life so deal with it as you see fit. What ever works!
Thanks very much!
Me and my son use humour an awful lot. It gets us through the tough times and helps deal with setbacks.
Like today – I’m a whole lot better after my second dose of Campath and now suddenly the neuropathic pain in my feet has been cranked up high once more. I could either slide back into depression or just pick myself up and carry on. My legs are trembling in a funny way too. Most odd, but that’s MS all over, eh??
Well said ,I joke all the time about my MS ,it gets me through ,as humour often does .. This disease takes enough don’t let it take your chuckle bone too xxxxxxx
Very true Eileen – thank you!
your blog, your rules.
People have the right not to like what they see here, but as has been said above…. no one is making them read it. How you cope with your MS and what you write about is up to you. Personally, I find it a little odd when people blog about nothing else BUT their MS …. because I choose to write about all kinds of useless crap as well as my MS and try to dwell on it as little as possible…. but each to their own, and it is incredibly useful to read about other people’s experiences. We’re all different, but knowledge is power and it’s brilliant that people in limboland might read something that helps them to realise that life goes on whatever your diagnosis.
Humour is good. Laugh at MS if you are able. It certainly f*@king deserves it.
Haters gonna hate. Ignore’em. Or point them back to the Daily Mail website where they can vent their lack of humour with their soulmates.
Thanks for your comment! I really hope my previous posts show that I write about other stuff as well as MS. Just about a life that happens to have MS in it. When I started the blog, I was in a pretty bad, confused place. Now I’m a lot different, thanks in part to all the support I’ve had through this blog, Twitter, etc.
Love that – haters gonna hate. And don’t get me started on the Daily Wail/Fail!! I could write an entire blog based on writing about how crap/biases/discriminatory their reporting it. And I say that as a divorced, single mother, lol.
Oh, I’m not talking about your blog. We’re in the same section on the carnival for MS bloggers, and I’ve often wondered what people make of my endless posts about earworms when they’ve come for a dose of MS misery!
I understand why people write about only how hard their life is and how much MS sucks. I really do. I also know how (relatively) lucky I am…. but honestly, browsing through some (by no means all!) of the blogs in the carnival makes me feel depressed. THERE’S MORE TO LIFE! Before you die, live.
Well said. Funnily enough, a big part of the reason I set up this blog was in defiance of the misery blog. Obviously a lot of my posts are pretty darned miserable too (holds hand up), but I think the majority are either about the funny side of MS and the greater society view of chronic illnesses. I was stunned to suddenly be viewed as a disabled person, even though my illness is almost invisible to other people.
Anyway, you are absolutely right. This is not the rehearsal. And all of us are in the gutter, but some of us are looking at the stars. John Lennon?
hell’s bells girl. everyone’s allowed a bad day and a moan. you and me not least!
Definitely! As long as it’s not too many, lol. Otherwise I will start a misery blog 🙂
*shakes head* um…hmmm.. are we supposed to be miserable and grovel at doctors/researchers feet?? people will find any reason to complain
So it seems! I think we’re all grateful for modern medicine advances, we just don’t have to turn ourselves into tragic figures to show that.
They say success is the best revenge, so surely any of us with MS who live ‘successfully’ despite MS are doing just fine. Show MS we mean business.
very grateful to the advances in modern medicine, 15 years ago I would not have any options. people dont rave about being able to take antibiotics tho, why should someone with MS rant about DMDs??
I think this whole thing goes back to a post you made a few weeks ago (I think could be wrong). the doom and gloom brigade rearing their head again, and you will never make them happy. yes I have MS. But I refuse to let that define me, and sadly some people think it should.
Oh, yes, the doom and gloom brigade! Aren’t they fab!
And it’s definitely about refusing to be defined by MS.
MS is crap …. It’s a daily struggle for the person and their friends and family…. It’s in curable, an evil invasion and one hell of a thing to live with. But we are alive and I applaud you you for maintaining a sense of humour in the face of adversity. I would not get through each day without my sense of humour and that of my daughters whom I’m glad to say has inherited my sense of fun. I might be disabled, but like you, that does not mean I have to now lead a serious life. I make fun of myself, I laugh through the tears and I make light of what I have to deal with every day. That’s how I deal with this invasion, this thing that I have no control over because I refuse to let it control me totally and my sense of humour and fun is the one thing that is mine. So please please please do not stop injecting a sense of fun into your blogs xxxx
Hey there Angela,
Such a lovely, positive comment, thank you!
Reflecting back on my blog, I know it seems as if MS dominates my every waking moment, but honestly, it really doesn’t. I was telling a friend the other day that sometimes, on a good day, it only hits me by late morning that I actually have MS. I know I’m lucky compared to a lot of people though.
I think my blog goes through cycles of ups and downs, but surely that’s what blogging is all about? The good AND the bad. But, for me, mostly the funny bits.
You are the only person , I no who makes me feel better about having MS, YOU make ME feel like I am not alone and make ME smile. I don’t care what these people say, keep the people you need you smiling and – – . To the others, THANK YOU, THANNK YOU, and if they don’t like what you blogg, tell them to blogg off and find some else to bully. X x x x
Your comment made me smile. I know what you mean. I think this is a niche blog, and as such, yup, I do talk about MS an awful lot. But it’s such a great way to get all my frustrations out!
Yep your ok, keep blogging. X x
I never get round to commenting on your blog but this post has prodded me to action! I can’t imagine how any of your posts strirred anyone to such unpleasant responses. Your posts make me smile too!
If someone tells me that they know someone else with MS I try and and mention that everyone’s MS is different … maybe I should be adding that everyone else’s reaction to it is different too. It’s such a personal thing, so much to get round in your head, we all deal with it (or not!) in our own way, and not necessarily in the same way all the time.
I am so impressed at how you get across how you feel, and are happy to share this, so soon after diagnosis … it’s taken me years to feel I have any sort of handle on it!
I think for me, a big part of why I started blogging was because I live alone with my son – so there wasn’t a partner to offload to. Blogging allowed me the chance to have laugh and whinge.
It’s definitely a personal thing to come to terms with, we’re all so different. It’s been good to sort out my thoughts!
Of course, S-I-F was started by you for specific reasons and I have laughed a lot, cried occasionally, learned much and enjoyed your take on life.
I have my body armour on, but I have to agree with Steve Domino, insofar as I too am concerned that writing about MS every day must mean that for the length of time that you are thinking of (MS-related) topics, composing your (MS-themed) thoughts and publishing and replying, MS is your master/mistress. You know what I mean. Which essentially means that MS has to more or less filter through everything you write about and perhaps do. I’m excluding the excellent work that you do for the MS Society.
For the last three months, I’ve decreased my dependence on reading MS blogs, yes even yours. Why? Well, I thought I was being sucked into an MS maelstrom, even though I’ve favoured the more whine-free, woe-is-me-free blogs. Cold turkey doesn’t in anyway amount to denial of the increasing number and infinite variety of MS problems I have (whine, moan) but it’s refreshing to not be reminded every damn day about them in print.
Interestingly, the change or lack of it may be why so many MS-themed blogs die a death. The most successful ones -rephrase enjoyable ones, I think- appear infrequently and are a pleasant surprise to come across them, rather like discovering a rich and delicious cake, when you were prepared for digestives.
Where am I going with this? A plea to not let MS take over your life anymore than it already has! Perhaps even reduce the number of times you post, but keep it pithy and witty.
I still have my body armour on.
Really thought-provoking comments, thank you.
Can you believe when I first started this blog, I blogged every single day?!! I think I needed to, just to get everything out. Then I reduced it to every other day and recently I’ve been thinking about cutting down even more. I don’t want the blog to die, but I know it will have to change. it’s hard to explain, but blogging gave me much-needed structure in my life when everything else was crumbling, me included.
You’ve given me a lot to think about!
oh, to hell with it. I blog every day. Who cares if anyone’s reading? I do it for me, sister!
You’re absolutely right!!
Hi, I have recently been told the wonderful news that I have PPMS. I just wanted you to know that I took it badly and went completely into myself. My husband showed me your blog about a week ago and I have to tell you, you are witty and brilliant. You have made me laugh and cry and I have told all my friends about you saying that you put into words exactly how I am feeling. Dont mind the nasty people out there I THINK YOU ARE WONDERFUL. KEEP UP THE GREAT WORK.
So sorry to hear your news and I hope you’ve got a great support network round you.
Thanks for your lovely comments, means a lot to me!
it’s a funny old time for my blog at the moment – wondering which direction it should take next. Watch this space!
Blimey what a lot of comments this has provoked!
I have to agree with some of them. I love reading your blogs so please don’t stop posting as they’ve reassured me, and probably many others on a number of occasions.
You have a great way with words so maybe you could write about other stuff (Swisslet stylee) or just less frequently. I’ve recently cut back on my Internet activity (even gave up Facebook!!), I still visit your blog sometimes, and a couple of others, but these days I’m far less obsessed with all the MS related forums and sites and am feeling much more chilled as a result. I know that MS is always somewhere in the background but for now, luckily, my Monster is quite tame so I’m ignoring him and getting on with life! I know that might not always be the case but for now I refuse to let him dominate my thoughts and conversations!
I know what you mean – I’ve been looking back over my blog posts and I do write about other stuff, but I think probably because of the recent Campath, MS has come to the fore again.
Am definitely toying with the idea of blogging less frequently. I do like writing opinion pieces!
Please don’t stop, I look forward to reading your blogs, love reading all the comments. Your my MS smile diary. X
That’s a fabulous comment, thanks Tricia!
This was an outstanding post. All I do is joke about MS. With my coworkers, with my family, with my friends. it sets the tone for how I want to be treated, like the same old sarcastic girl I was before we knew about this. I don’t laugh so I won’t cry. I laugh so THEY won’t cry.
Wow! Thank you so much.
I’d really like to think I’m the same old me, a cheeky, rude bod with a good sense of humour. It’s got me this far….
Gosh. This really has raised a lot of comments, so it would be rude not to join in. Excuse my tardiness but MS decided to send me blind for about a week following my little trek. A new and exciting symptom. So here goes….
Your blog is thoughtful, amusing, and down to earth. It is never prescriptive or patronising. It certainly inspired me to start one up. The sheer feedback you’re getting means it’s doing the right thing; being read and raising opinions. Above all it is a beacon for MSers in a sea of perceived isolation.
So what if laughing at MS rattles a few cages? Far better than self pity and whinging which gets people nowhere.
Keep up the good work.
Aw, thank you James!
So sorry to hear about your blindness but hoping your venture went well?
And I’m really glad (and chuffed) to hear that I have been a blogging inspiration (gets a big head now).
It’s funny that I set up my blog because I felt isolated, and now hopefully I’m making some people feel a little less alone.
btw – you’re an inspiration too!! Love your blog and how you’re raising money and awareness.