Hmm. Excuse my random ramblings in this post – my last blog post threw up some extremely thought-provoking comments and I’m still working my way through them.
A couple of people were concerned that I’m blogging/thinking/worrying about MS too much perhaps and I completely understand what they mean, as I blog every two days.
Has MS dominated my life to detrimental levels? I’ve also always posted about things unconnected to MS, such as my adventures with make-up, The Teenager, my rantings against the Daily Mail, politicians, lifestyle gurus, etc.
Funnily enough, before the comments, I was wondering how I should move my blog on slightly, especially after the second lot of Campath treatment I had in July. Or is it naturally evolving anyway?
Initially, I started the blog for two reasons. First, to make sense of everything and second, to show that there is light at the end of the tunnel. It’s not all bad and some of it can be downright hysterical. Worst case scenario, if my blog bombed, at least I would have a nifty diary to show The Teenager when he was older.
So, where do I go from here? How much is MS a part of my life? Honestly, blogging has been the best form of therapy ever, and it’s thanks to comments from you guys that I can be prodded in the right direction. Blogging is public and I’ve always published every comment, no matter how much they might make me go ‘Ouch, that hurt.’ Otherwise, why blog? Why put yourself up for public scrutiny? Why not just scribble in a diary?
My MS journey has been weird and wonderful. If nothing else, I hope that people can see that it is possible to fight back against discrimination in work, that it is possible to be a single parent with MS and it is possible to get back up after being knocked down. I’m still confused. I love writing. I adore the discipline of searching for the right word, the best way to convey complicated feelings. I’m not yet sure how to change the direction of my blog.
Finally, now I have had Campath and haven’t had a relapse since last year, am I still ‘qualified’ enough to talk about MS? All I know is, blogging kept me sane through dark times. And without you guys, this wouldn’t have happened.
Top of the page – ‘a funny old life with multiple sclerosis’ – it’s in the title isn’t it? So you write about it every couple of days, how does someone get from that that you think about it too much?
Don’t doubt yourself based on opinions from people who do not personally know you. (she says making a huge assumption) Oh, and you have ms of course you are qualified to write about it, and very good your writing is I might add!
After 12 months and 4 relapses I am waiting for the nurse to bring me my first batch of Copaxone. In my mind I imagine that once I am in a routine with it I can move on and ms will be old news.
You mention that you have had your second Campath and I wander if you see it as a turning point and that maybe that is why you are feeling a change in direction coming on with the blog?
Thanks for your very considered comment, Julie!
It’s interesting how I had already thought the blog would slightly shift direction (nothing drastic) but obviously things are changing – I won the case against my employers, I’ve had fabulous medicine choices and I’m now quite ‘stable’. However, I still really want to keep the blog going, I enjoy it far too much!!
I do understand why some people felt concerned, but I was thinking about it this morning, and I guess my blog is my outlet – a parcel of space about MS – which keeps it away from the rest of my life and especially my son. If that makes sense??
But I also enjoy writing about other stuff that annoys me/makes me laugh, etc. Maybe I should promote myself as a lifestyle blog???
X
I think you should blog about whatever you want to blog about. I’ve only been reading your blog recently so may not be qualified to say you blog about MS too much, but that is what your blog is about. Your life and like it or not you’ve got it. The severity of your symptoms will decide how big a deal it is in your life and if it helps you, then blog about it.
I’m not sure why people want you to change things. If writing about it gets you down don’t write about it
Keep on blogging.
Den
Thank you for your comment!
I’m really glad people raised the point – it made me stop and think. Always a good thing!
So I have reflected on this. I mean, I’m still a single parent with MS and it’s still going to be tricky. I still have a lot of symptoms. The last thing I want though, is to turn into a misery blog!
I think I’m just going to keep on blogging. Maybe I’ll post less frequently in time, maybe not. I’ve still got an awful lot to say for myself. Used to get in to trouble in school for it!
I just wanted to spark debate. Without comments and points raised, the blog is nothing but an online diary. I really do think blogging is a two-way process – my posts and the feedback I get.
I’m definitely rambling now! But just to say, I think my blog is always evolving, just like life is. My MS has changed, The Teenager keeps thinking up new ways to annoy me (bless him) and life chops and changes.
x
hmm
Stumbling and I went back and forth about this on Twitter the other day – i’d just like to say that my initial concern was that (personally for me), i don’t blog about my MS every day or to a schedule because (for me) it’s not healthy (for me and my family) if i think about my MS that much.
when i see how often Stumbling publishes, it makes me worry. purely for that reason.
she should write whenever she has something to say about anything she wants to write about – i’m not in anyway impinging on her FREEDOM OF SPPECH.
yes, this is a valuable platform for all us pwMS, and i have no problem with the jokey tone – and if anything, i prefer the jokier posts to the ones where Stumbling is (frankly and understandably) a bit depressed.
but neither should she ONLY write light-hearted posts.
i don’t know where i’m going with this (surprise surprise!).
but my initial thoughts were sent with concern and (weirdly but seriously!) love for somebody i’ve connected with through this crappy condition.
i’ll end with my favourite joke:
(Man walks into Doctor’s office)
MAN – Doctor, Doctor, it hurts when i do THIS (man lifts arm into the air)
DOCTOR: So don’t do that, then
sorry for all the brackets!
x
Hi Steve,
Fabulous comment, thank you so much!
I do know exactly what you mean and it was good for me to go away and think about it.
My big problem is that I have FAR too much to say for myself (see previous comment). I remember writing earlier, that when I run out of things to say, I will wave goodbye to the blog. I reckon blogs have a set shelf life anyway.
I think I also said yesterday, that if I had a partner living with me, I probably would never have started the blog in the first place. This was really my main outlet. Also, I didn’t want to lean on my mum too much as she was also struggling to come to terms with her daughter having MS as well as her husband.
So you’re right in that way – if I had a family like yours, I probably wouldn’t blog half as much, if at all. But for now, in my ahem, single state, the blog is my little bit of time carved out just for me. Just a bit of time put by to pour out my frustrations, worries, fears, etc.
I really, really appreciate your feedback Steve – it keeps me sane and I love all the pwMS I’ve met through blogging, tweeting, etc.
Anyway, I think I’m rambling now.
x
p.s. love the joke! I’ve got lots jokes but they’re a bit too rude for the blog, lol.
Very interested in your reasons for blogging. My reasons for setting up the website (www.aid4disabled.com, tiny advert) and professional speaking were the same. The MS meant that I had to give up my career and the website stops me going totally bonkers. The difference is that I want to turn this into a business, you do it for aesthetic reasons but for both of us it is something we enjoy.
MS does domimate our lives (that’s a given), yours more so than mine. I find life much easier if I put it out of my mind. Aid4disabled means that I do things with people who do not have MS so that means it is less of a focus and its not in my face. I have also met a lot of people through networking and that has been a big help.
So you say that you have not had a relapse since starting campath (that’s brilliant news) but has the damage to your life from MS shown any signs of improvement and is your life easier? My niece, who lived in Penarth, had campath and so far no relapses with her either. Sounds like it is good stuff.
Keep it going,
Patrick
HI Patrick!
Yup, Campath has been like a miracle, truly amazing, considering I was having relapse after relapse before.
I really don’t think MS dominates my life. The majority of my life is spent with non-MSers doing non MS-y things! Like I said, the blog is a slice of my life, just my way of not internalising everything. Plus, I often fancied myself as a writer!
x
Well there you are, MS has opened a new window for you and likewise for me.
Absolutely!
Sometimes the best opportunities arise from the most awful situation.
x
Just “popped in” to see how you are.
As your blog title says “a funny old life with MS” – I know I suggested you write about other stuff but thinking about it this morning I’m not so sure now. Although I don’t want to read about MS every day (I know, no one’s forcing me to!), there are many newly diagnosed people looking for as much information and reassurance on the Internet as possible and amongst all the scarey, serious posts and forums it’s good to find some humour and understanding, with the occasional “lol” and “meh” thrown in!
Having Campath should be even more reason to keep blogging. I’m interested to see how you are and the long term effects of this treatment and I’m sure that once campath is licensed and hopefully more available to ms’ers, there’ll be more people wanting to learn from your experience of it.
So, what I’m trying to say is “keep up the rambling!”
X
Hi there Jenny,
Really interesting comment, thank you!
And I really must write more about Campath. I’ve been kind of hesitant before as I know so few of us can get the chance to take it right now. I don’t want people to feel I’m ‘boasting’. I just happened to be in the right hospital at the right time, I guess.
I can’t wait til it’s licensed and hopefully it’ll be soon. Anything to stop the progression of MS has to be a darned good thing.
x
p.s. good point about my blog strapline!
write about what inspires you. If that’s your journey through MS, then write about that. It’s unique to you and useful to other people on similar journeys. Most of all though, write for yourself. I totally understand it when you say that blogging like this has first and foremost helped you to think things through. Me too…. although in my case that’s on all sorts of things as well as my MS. I like writing reviews of the gigs I go to… not because I’m good at them or I’m looking for readers, but because attending a gig knowing I’m going to write about it forces me to enjoy it with a slightly different head on. I’m forcing myself to process what I’m experiencing, rather than just experiencing it. If that makes any sense.
Anyway. If you enjoy writing — and we sure enjoy reading it — then you should just write. You wouldn’t let anyone else think of you as being purely defined by your MS, so don’t put yourself in that box either. WRITE.
Thanks Swisslet!
And such a brilliant point you made about not being purely defined by MS. I really don’t feel I am.
I was trying to explain to a friend I haven’t seen in years the other day that there’s a whole lot more to me than the blog. The majority of my life has nothing to do with MS, but of course, MS has a nasty habit of seeping through the edges. So if I can start to view it more positively, then that’s a good thing.
The last two blog posts have been really interesting and it’s hard to explain, but it’s been really great to sit back and take stock, just a month short of the blog’s one year anniversary.
I’ve come a heck of a long way!
x
I was explaining to someone today that, although I try not to let MS rule my life, there’s not a single say when I don’t think about it. Would that it were so.
I’m with you on that one!
x
single day, even….
You are an inspiration to me. I was diagnosed this year. You inspired me to begin a blog (which fizzled out). This is YOUR blog and it is for YOU. If others do not agree with some of your posts then they can read something else. Keep on keeping on! P.S- what is Campath?
Hi Becky,
Thank you! Campath is a chemo drug used for leukaemia and isn’t licensed yet for MS, but hopefully it will be soon. It basically takes out the immune system so when it re-boots, it has killed off the t-cells (or something) which do a lot of the damage in MS. It’s supposed to stop relapses and therefore disability progression and I haven’t had a relapse in over a year, touch wood!
x