Hmmm. It’s been pointed out to me that perhaps I live in an MS bubble – I think MS, breathe MS, speak MS.
Nothing could be further from the truth.
Fair enough, perhaps I am trapped in some kind of bubble, but through no choice of my own.
I have always said, if I had a partner, he would be my ‘blog’. I could offload, work through feelings, come to resolutions. I don’t have that. Therefore, I blog.
Sadly for you guys, you are the devils on my shoulder. And what a brilliant collective of devils!
So how far has my MS bubble extended?
- First, I must address the point made by some friends – they know people who don’t ‘bang on’ about having MS. Hmm. I write a blog about MS. (come to my house and we’ll chat about anything and everything but not MS – for more than five minutes). Furthermore:
- My blog is not the whole story. Believe me, you would run for the hills if you heard the whole sorry saga.
- I have a life outside my blog. Yup!
- I lost my job thanks to MS and ignorant employers – MS (but I won the tribunal – result!).
- I nearly flunked Uni – MS.
- I passed degree and enrolled on an MA – MS.
- My career path has radically altered – MS.
- My (sadly neglected) dating history has ground to a halt – MS.
So, yes, MS has had an impact on virtually every area of my life. Even down to reading a book. Anything more than 300 pages and it’s Kindle, not a paperback. Numb hands are not much fun. Ditto shampoo bottles. And squeezy ketchup.
I was told (by a fellow MSer) that I ‘may as well go out with him’ as he was ‘the best I could hope for now I have MS.’ Well, no.
My world has perhaps been shaped and altered by MS, but it in no way defines who I am. I was always go-getting. I was always adventurous. I have always brought up The Teenager to believe that life was out there, ready to be discovered.
Which is all the more surprising as The Teenager is somewhere on the autistic spectrum. I was fortunate. I met a leading expert years ago – he told me ‘push him out there. make him believe he can do it. You can’t change his world, but you can help him adapt to it’.
And, you know what? It took me three years to get him to catch a ball and the same time to teach him to swim.
So, no, MS is definitely not the most important thing in my life. The Teenager is.
Firsty, who are these people that are telling you you live in an MS bubble???? I am assuming these comments have come from people without MS? I basically have one friend (if she reads this yes you GF!!!) that is understanding of my MS, the rest have never done any research into it and they must think it never affects me because of the old ‘but you look so good’ thing. I constantly post things on my facebook page about MS in an attempt to inform my friends about MS but I’m convinced none of them read any of my posts but I keep posting them!!! I know for a fact that if most of my friends got diagnosed with MS they would crumble as they moan about the slightest thing and if they lived a week in my shoes they’d soon understand what I go through even though my MS is not as bad as a lot of peoples it’s still my MS and I’m the one living through the constant fight of fatigue, numbness and a current relapse of optic neuritis. My point being it’s hard not to think of MS constantly as unfortunately it is with us every day. I’ve had MS since I was 17/18 but wasn’t diagnosed until I was 29, I was always tired and couldn’t understand why but when I got my diagnosis it made sense. I failed A levels, couldn’t finish my degree therefore leading to a career change all due to fatigue and depression. I know for a fact that if I didn’t have MS my life would be completely different, I would be working full time earning more money in a completely different career. Soooo after my rather long winded comment my point is ignore these people they have no understanding of what we go through and I love your blogs, it’s comforting to know of fellow MS’ers going through the same things (not that I’m glad you’re going through them). So PLEASE don’t stop blogging about MS we’ve only just got you back!!
Such a lovely comment, thank you!!! And yes, it is VERY hard not to think of MS. I’ve tried!
I never wanted to be one of those people who define themselves by their ‘illness’. No way. I just happen to be a peep with MS. Yet, on the other hand, it really does impact every single thing I do. So should I think about it more?
Hmm. As I wrote at the end of the post, and it may surprise a lot of people, The Teenager’s challenges are far, far more important to me.
X
Your blog posts make me smile. Fair enough they are often about MS – it affects every part of our lives, doesn’t it? – but that’s not ALL they’re about. Please keep it up! 🙂
Absolutely!
And that’s the beauty of MS – no two the same. We all have different MS problems, as well as, and not forgetting every day life.
As for every day life, I still have to unblock my drain…
x
Every so often the “bubble” bursts and the reason is all to clear to see: The Teenager. A big part of your life who you’d no doubt could not do without. But when you re-enter that “bubble” it’s not just you and MS, it’s everybody else whose life you touch through this blog and that can only be doing them and you, some good. The feedback you receive speaks for itself.
Thank you! A lovely thing to hear.
Yes, The Teenager comes way, way before MS. I never spoke on the blog before, about his particular problems. I wanted him to speak for himself. Which he has done. He is amazing. And I am so glad I brought him up to be the best he can be. Sure, we have our – ahem – hard times. Very, very hard. But, we get through them. Until the next one.
X
So much I won’t to say. But I won’t, we love you.
I want to cry! So lovely, thank you.
x
What a load of crap that you “live in an MS bubble.” Frankly, everyone who lives with a life-altering disease lives in a bubble of some sort. You can’t possibly *not.* We live in a culture that subtly blames the ill for their own problems anyway. (Don’t think about the fact that you have an incapacitating disease! Think “I can”!) F— ’em. Someday, those now-healthy intolerant folks who find others’ illnesses oh-so-tiresome will themselves start falling apart. Everyone succumbs to entropy and age eventually. Then they’ll be in a “bubble” of their own and will finally get it.
The funny thing is, I read your blog and I genuinely can’t freaking believe how much you do in spite of MS. You work(!), you fought evil former employers(!), you travel(!), you write a beautiful blog (and post frequently)(!)), you earn degrees and sign on for more (!), you are single-handedly lovingly raising a child with extra needs(!!). You do things that would leave many “well” people flat on the floor, in spite of neurological fatigue and all the other wonderful incapacitating things that come with MS. And people think you live in a “bubble”?!
Speaking of The Teenager, this was a really beautiful post. My brother was autistic (he died of something unrelated 15 years ago), and I know, and am related to, a few people on the more high-functioning end of the spectrum. I have some inkling how incredibly hard the day-to-day can be in that situation, even for someone without fatigue and their own physical issues. With fatigue, etc… the mind boggles. And still, it’s obvious how much you do your best (and beyond) to make sure your son has as rich a life as possible.
Yeah… to those who criticize… F— ’em indeed!
A really thought-provoking comment, thank you!
The Teenager is pretty high-functioning. We realised there was a problem when he was a toddler and luckily he had a great doctor who organised OT and other support for him. It’s not been easy though. Primary school was a nightmare.
Things are more settled now, with flare-ups of obsessive behaviour but I know what to look out for! More importantly, we talk about it openly which helps. But it can be tiring. Just last week, I went to bed ten minutes before I said I would. He got extremely upset (under statement). That was hard.
Onwards and upwards!
x
Oh dear… forgive me, because it isn’t at all funny, but the 10 minutes early for bed thing kind of made me laugh. I can picture it exactly! It was more a rueful sympathy laugh…
Sigh.
I’m still irritated on your behalf over the “bubble” thing, especially in this context of everything you’ve been coping with. Besides, isn’t it part of being a good writer, to have the ability to examine one’s life critically, and not be superficial? If that’s living in a “bubble,” then, hell… ! You do it well! And I mean that in the most sincerely positive, approving way.
Yup! It kind of sums him up. When he was younger, the slightest thing would just make him scream. On and on. Just screaming.
I know what you mean about the bubble thing. This is why I missed blogging so much – it was good for me to examine things, write about them, rather than let them float around my mind, driving me up the wall. We all live in a bubble? It’s our life – each life is a bubble!
x
Oh, the screaming…! I’ll bet you had your share of judgmental ignoramuses then too. People are so understanding. (cough)
“Each life is a bubble.” Indeed! I’ve actually been getting into this, thinking about bubble imagery…
I sure did! Still do. Plus had a lot of people saying I was making it all up. I was over the moon when his paediatrician (sp??) confirmed it. Oddly. At least it meant I could get him the help he needed.
He’s a whole lot happier now than he used to be. A bit like with MS, we’ve got tricks and stuff to pull out of the bag. I know when he’s going in to meltdown. I understand his various obsessions. I still make sure he gets out and about in the world.
Mind you, some things come out of the blue. I was at work a couple of months ago, an early start. He called me, screaming that a button had come off his school shirt and he wasn’t going to school. I had to ask my mum to go down and calm him down. Plus sew the button back on. But the good times always outweigh the bad.
x
p.s. I am loving the bubble imagery too!
x
Ooh this made me mad and I agree whole heartedly with Carol and everyone else.
I have come to realise that MS picked me because I am strong and empathic unlike most of my family and old friends/associates. If I am in a bubble too I am bloody grateful because I need protecting from people who should know better.
We have to face this disease everyday all day and none of us know what that will mean from day to day. We also have to face the future and that is bloody scary and unpredictable. Brain atrophy to name one in my future. So hell yes, bang on about it, I blumin will.
How dare they, how would they feel knowing that whatever happens to them, their young children have to witness it in all its glory?? I picked the DMD I’m on because I didn’t want injection site reactions to scare him. That is all I can protect him from 🙁
This bubble you have been told you’re in, you are not alone (hugs).
Bubble Blog unite!!!
Hi there,
Great comment! I’m like you – I chose Campath as it seemed the quickest way to get back on my feet for The Teenager. I was in a pretty bad way and hated him seeing that.
If I am in a bubble, I like it. Thank heavens for social media! If I didn’t have this blog or Twitter, I would most certainly be isolated, which would be no good for anyone.
Sadly, my son has put up with a lot of uncertainty thanks to MS. But in a strange kind of way, it’s made us stronger!
x
‘Which is all the more surprising as The Teenager is somewhere on the autistic spectrum. I was fortunate. I met the leading expert years ago – he told me ‘push him out there. make him believe he can do it. You can’t change his world, but you can help him adapt to it’.’
Wow! My wife has MS and my son is on the autistic spectrum the bit above just struck a chord with me. I am happy to be in your MS bubble with you!
Welcome to the bubble!!
It can certainly he hard at times, but he’s doing well. I’m so proud of him 🙂
x
When we are criticized it is natural to look at ourselves and question the validity of it but we are not defined by the ignorance of others’, and neither do we have to justify ourselves to them.
I sense that you are feeling jarred by recent events and would like to say that when people criticize like that it is coming from their take on life which is littered with their own insecurities. None of us are looking through the same lenses.
I have heard experts say that we are all on the autistic spectrum, it’s just a matter of how far along the scale we are. After all there is no ideal or perfect person (except Johnny Depp obviously). The trouble is society expects certain behaviours/skills and anything else is somehow wrong. There is no right or wrong, just different. My daughter has difficulties with memory and executive functioning and I am doing my best to help her develop skills in that area. I also see my children as my priority and try to give them tools to cope with the world.
You come across as a caring and loving mum and I really enjoy reading what you have to say, ms or not. x
Thank you for the lovely comment 🙂
I sure am jarred! There’s so much going on right, without all that.
I heard the same thing when he was diagnosed. Hopefully with him having to fight so hard to integrate in to society, it has given him skills for life. He’s fearless, bless him.
X