A post caught my eye on the MS Society forums the other day. An anonymous person wrote, ‘what would you have done if you didn’t have MS?’
There were some curt replies – ‘a futile question’, ‘this question is a bit pointless’, ‘I don’t think there’s any point wondering about this.’ But the second part of the question actually gave it a point – ‘Or have you been able to do all the things you want or wanted to do with just a few adjustments?’
I think this is perfectly reasonable to ask, especially as it was posted in the ‘new diagnosis and before diagnosis’ forum. Isn’t this what we all ask ourselves after we’ve been diagnosed?
Someone also replied that this was the same as wondering what it would have been like to be born a boy instead of a girl. Well, no, it isn’t. We’d be none the wiser if that had happened. MS generally strikes in the middle of someone’s life, there is a definite before and after.
Since being diagnosed, I have had to tweak my career path. Who knows if it’s better or worse than what I had previously planned? It’s just been modified to take MS into account. In a twisted way, MS has added a sense of purpose and drive to my life, which, truth be told, was meandering quite merrily towards an unknown destination. Essentially, MS has given me a massive boot right where I needed it. MS made me reconsider my life from every single angle, and how many people get that chance whilst still relatively young?
Or is it just too easy to blame MS for everything? ‘It’s not me, it’s my MS.’ It’s a cast-iron excuse, something to fall back on when the going gets tough. I hold my hands up. There were many, many times when I wailed ‘my life is over, s’over, s’not fair.’ For almost two years I convinced myself I had no future, nothing worthwhile to contribute to society. I’m not saying MS is a blessing. Far from it. But if we have to live with it, we have to make it work for us.
So, if we look at the question again, we could ask ourselves, ‘What would you have done if you didn’t have MS, and why aren’t you doing it?’
I totally agree (again!). My MS changed my life completely but not all in a bad way. I was a successful professional opera singer and had to give up my international life. This has been hard for me but on the upside I stay home now and definitely have a far better life and relationship with my husband. It’s made me realise who my real friends are and I embrace every day instead, as you say, just meandering along. Once again thanks for you superbly written blogs. Jenny x
Hi Jenny,
Thank you for the lovely comment- what a fabulous start to the day!
It’s funny, it can seem the great unspoken taboo that sometimes (only sometimes and not for everyone), MS can bring good things as well as bad. Like you and your husband, my relationship with my son is much better than before. And definitely, it’s about embracing every day. I think when each day can be a bit of a struggle, we appreciate things so much more. I used to always live either in the past or in the future, completely forgetting the here and now and the amazing small details that make up each day.
x
It takes your friends and family in my case, my brother got cancer got a cure and is fully recovered thank god, but my mother who ignores my illness it’s very hard he had a lot of treatment over 4 years my mother was there daily doing everything, I have laid in bed for weeks not a call nothing, my family tell me to remove her she just causes stress !!!
Now i moaning but rant over and feel better for that, if you have listened thank you.
That’s awful. why the difference between you and your brother? Was it because his illness was more ‘visible’?
x
Good morning,
I don’t know whether you saw my last blog post – I was having a moan about the forum. I was probably being harsh but it’s how I felt. The post you saw was an interesting example. I thought it made a good point and could of been interesting but instead the MS police came out.
I’m still trying to help newbies but have become soooo unconfident and I am still learning myself.
I will read your post again and put something more constructive later, I just wanted to write my immediate thoughts on first reading.
Sam xx
Sam!
I’m so glad you wrote. It was actually thanks to you that I wrote this post. I did read your post and it made me want to take a look at the forums.
I think you were absolutely right. I felt the person who posted the thread I wrote about was treated pretty harshly. Especially as it was in the newly diagnosed forum. I felt pretty angry on their behalf. It was a darned interesting question and they were completely rounded on.
Keep helping the newbies Sam. And thank you for giving me inspiration!
x
Sam’s comment about the MS police did make me laugh 🙂 I tend not to comment on the ms society forum now because of certain users – sad isn’t it that your too scared to post or comment for fear of the MS POLICE 🙁
Sue
Me too! I chuckled in to my coffee. She has a good point though. It’s why I stopped going on the forums so much a year ago. Didn’t like the way people seemed to gang up on people who were asking innocent questions.
Yup, it’s very sad that MSers can be like this. We’ve all asked weird and wonderful questions, especially around diagnosis time. Watch out for the MS Police. There has to be a blog post in that!
x
Most deffinatley think that would make really interesting reading 🙂
There are some proper nasty people on the forum in my opinion, would make anyone scared to comment or post for fear of been shot down in flames!!
Sue xx
Couldn’t agree more. Probably people with too much time on their hands and far too low self-esteem. If it makes them feel ‘big’ to bully other MSers, that’s pretty low.
Maybe we should set up a vigilante forum gang? We could trawl for nasty comments and swoop on them, rescuing the innocent posters?
x
But then we’d be like them with too much time on our hands (something I haven’t got) more often than not there’s a nasty comment in every post that’s posted there!!
xx
Very true. Shall we just leave them to it? Meh.
x
It’s a GREAT thinker, but I still feel LOST, but trying hard to move slowly forward for the BETTER, (I hope) lol x x x
Hiya,
I’m not quite there myself yet! So much to take in when your whole world turns upside down.
x
P.S. keep us smiling, Thank You x x
I’ll try!
x
Brilliant blog – as always. Speaking as someone who’s been recently diagnosed with RRMS, I avoid the forums. At first I scoured the internet for any glimmer of hope that I could live my life as before but with a few adjustments and I have to say, the forums put me in a bit of a depression.
I know everyone’s MS is different and so far, I have been lucky – slight balance issues, some sensory issues and vision problems and I’ve also been lucky enough to live the first 50 years of my life pre MS dx. However, I do think there is some bitterness of the forums. One example was the news that Jack Osbourne is have stem cell treatment – some of the comments about this were vile and also very frightening to read when you’re newly diagnosed.
I’m not silly. I know that my condition may get worse as I get older but in the meantime, I’m adopting the ‘use it or lose it’ approach. This morning I walked almost 4 miles before breakfast. (Go me)! One day I might not be able to but right now I can. I can’t tell you how much it helps and improves my confidence about the whole thing.
Anyway, keep up the good work with the blog….your humour has helped to keep me sane xx
Hi there,
Thank you for the lovely comments!
I was like you – I looked all over the internet, especially the forums. On the one hand, I received excellent advice from one particular person (Rizzo on the MS Society forums – utterly amazing). On the other though, like you said, there seemed to be a lot of bitterness. Which I do understand, but it doesn’t help newly-diagnosed people. I got quite a few nasty PM’s when I posted about whether or not I should have Campath. The majority saying, oh lucky you, what a dilemma, stop shoving it in our faces. I mean, really?? I only said yes to Campath for two reasons – one, to keep bringing my son up, and two, ‘in memory’ of my dad who died of complications from his PPMS and never had the chance to have such amazing drugs.
Anyway, I am rambling! Good on you for staying so positive. Four miles is pretty impressive. Actually, a lot impressive, lol.
x
MS is a disease that can easily leave you feeling bitter and twisted. It can take your life away as you are starting to discover the real benefits – good income, family, exercise plus a whole lot more.
It is a disease that affects more people in their 20’s than any other disease. Its a disease that many people cannot see. People only realize I suffer a disabling disease when they see me walk
Only in the last 10 years is there any treatment or DMT available for people with RRMS. There is nothing for all those who now have SPMS but were treatable if the DMT had been discovered earlier.
Yes maybe you are lucky or maybe others like me are unlucky. What is important is to try and extract something good from your situation.
Sorry a bit of a rant – long day and a glass or two too many of wine when I eventually got home after the trains got working, cos a cow walked across the lines, after visiting London.
Thanks for reading
Hi Patrick,
Interesting comment.
I do accept MS can leave you feeling bitter and twisted – but if we have to live with it, we either go under or make the most of it surely? I think we’ve all be darned angry.
I do think it’s a shame there seems to be two ‘sides’ in the whole MS thing – those who have DMDs and those who are past that stage. Yes, it sucks. My dad was given morphine and sent home back in the 70’s. He was 35 when he died, leaving behind 4 children. There will always be someone worse off, so surely we should ALL celebrate medical advances, not just those who benefit directly from them?
I would like to think that if there is a cure for MS within 10 year, I will be happy that no one else has to go through this. I mean, you wouldn’t deny someone like me the chance to have Campath?
x
you need one of these for the cat, maybe not that big tho :p
grrr that comment was supposed to be for a different post *kicks laptop*
No worries, love it!!! Very good idea. Might save her eating the lovely birds in my garden…
x
probably not, would still eat the birds :p or bring them inside to show you :p
No doubt. For a tiny cat, she’s a vicious hunter. Just put out some more biscuits to try to keep her away from the birds…#
x
The only thing I would be doing if I didn’t have MS , is traveling more, but the whole not being able to walk very far kind of puts a damper on that :p I don’t think of what ifs, life is too damn short for that
I occasionally read the forums, but dont post as I have noticed that it can be a little catty/condescending :/
Yup, life’s far too short and this isn’t the rehearsal (wish it was!).
Interesting that you too have found the forums catty. Wonder if it’s the same for all illnesses and their respective forums?
x
No idea if its the same in other forums, I should ask some friends that have other illness’, they might know.
I just get a vibe from a lot of people, that if you are not that sick, then stop complaining. I would hate to see what they said, if I posted I was diagnosed in about 6 months, right on DMDs and I have a great MS nurse, and I didnt need a lumber puncture (they seem to take pride in it not hurting I have read…everyone I’ve talked to said it hurt more then anything they have ever had done).
sorry rambling a bit. I just think for a board that could be so helpful, its full of a lot of negativity.
Absolutely. I found the same too. It’s almost like a competition to see who has the worst MS. You’re shot down if you say anything positive at all. There seems to be some sort of MS hierarchy. And they always ‘suffer from’ MS, they don’t just ‘have MS’.
For the record, my lumbar puncture was by far the most painful thing I have ever had in my life. An 18 hour labour with the Teenager has nothing on it. I screamed my way through it and am not ashamed to say it. Would have helped if he got the needle in the right place, lol.
x
p.s. it’s very strange, as on Twitter, if you ask an MS question, you get lovely support. Just not on the forums it seems.
Brilliant blog, as always! I avoid the forums (apart from just checking to see the post you mentioned!), I find them too depressing. I think it’s a perfectly reasonable question, in fact it makes me realise that I wouldn’t do anything differently if I didn’t have MS. Thankfully I’m on a fab treatment which is keeping me well and apart from doing everything at a slightly slower pace, at the moment I’m still able to do the things I love doing.
I’m approaching my first anniversary of my diagnosis and am happy to say I feel the best I have in a long time. I know that’s not the case for everyone and that things could change in a heartbeat but hey, that’s life! Keep up the blogs, it’s great to read about a normal life of someone who just happens to have MS! (And has the same taste as me on tv!).
Jenny x
Hi there,
Thank you! So, we have another forum-avoider!! Something’s definitely not right, if we all feel the same.
I thought it was a really thought-provoking question. Certainly made me think. I’m probably the same as you – I’m feeling great thanks to Campath, just got to do everything slower. Mind you, I can’t quite remember what it was like pre-MS, lol. Now I just take the dodgy hands and foot drop as normal.
What did you think of the ending of The Returned?? I feel cheated. And very confused.
x
Hello lovely to hear you accepting it into your life it becomes our partner our other half our title, and she has Ms ! Is she ok that what I don’t like but 23 years on three children and great hubby , for them they don’t see me moan complain the have seen tears but we get on with it pick me up and carry on, I want to see my family grow, hopefully see grandchildren etc well I will try everything to kick its …. But will keep going love reading your posts, I am in hospital speaking to newly diagnosed and other offer the MS Soceity services and a listening ear. Sad but lovely to help .
Hi Chris,
That’s a fabulous thing, talking to newly-diagnosed people. We should all do more of it! It’s a frightening time and anything to reduce the anxiety and fears has to be good.
x
That’s good chris, I wish there’d been someone around to talk to me when I was newly diagnosed. My late father in law had ppms but apart from that I’ve never met anyone (knowingly) with MS. We have a day centre locally but my MS nurse advised me not to go there yet as the people there are older than me and more severely affected than me. When I go to hospital for my monthly Tysabri infusions its full of people having other treatments. Whilst its good to carry on as normal and keep MS in the background, it would be good to chat to other people in a similar situation to me.
Jenny
Me too! Our area’s group is probably the same as yours by the sounds of it. Me and my friends keep talking about starting a younger group, but never seem to get round to it. Thank heavens for Twitter and blogging! There’s a real sense of relief when you get together with other people who have MS. You don’t need to keep explaining things.
x
Oh, and as for The Returned……. It’s left me with loads of questions….. Lots of possibilities for the next series which I’ll wait impatiently for!
And me. Still don’t get it. But really, really want to move to France. So chic. Even their prisons, lol.
x
GRRRRRRRR! Just wrote a long and utterly brilliant comment, lol. Now am much too tired/annoyed to recreate it! Stupid computer!
That happened to me once, with a Uni essay. Beautiful essay and guess who was just about to save it when my computer died on me. Broken. Kaput. I was heartbroken.
x
To be honest, I suspect it was not brilliant. It WAS long, though.
I’m sure it would have been most insightful! 😉
x
O I so agree , since being diagnosed I too have had to change my job from being a very busy ward sister to working in occupational health and I look on the positives. Since MS visited me and stayed I have met some amazing people and in my new post my experience and knowledge of MS have helped so many people and staff , I am asked weekly to talk to newly diagnosed staff and its great to see their face when I tell them I understand as I too have MS … At last they can turn to someone who understand through experience
Hi Eileen,
That’s incredibly inspirational! And good to hear that positive things can come out of MS, not just doom and gloom. Who better to talk to newly-diagnosed people than people with MS??
x