In the short space of writing my last post, I have had three emails asking/demanding to know:
‘If you’re having a relapse, how come you have the energy to write about it?’
‘Don’t get it – if you can get to a keyboard, you can wash up.’
I expected this.
I had an in-depth conversation with my mum and one of my sisters last night about the same thing.
They understand that my outlet is blogging, writing, whatever you want to call it.
In short, there is no one else here. It’s just me.
So you guys, sorry, are my outlet.
Which is the beauty of social media. It’s called ‘social’ for a reason.
I remember so vividly how comforted I felt when I posted one of my blogs. I was in a bad way and the support came flooding back. I was not alone.
That’s the point.
This blog is my venting point, my working-out-my-emotions-point.
Yes, I still work. I work hard. And when I get home, it takes me at least three hours to recover. The Teenager will tell you the same thing.
I am exhausted. And alone. So, yes, I reach for the keyboard. And I don’t really think I should be judged for that?
ONLY Ignorant annoying people wouldn’t understand!! :-E and they can go get f***ed for all I care!!!
So true!!
x
You don’t have to explain yourself to anybody, only MSers understand how we try to make a positive out of a negative. Keep blogging your making people happy and I hope that makes you happy, or just tell them to sod off
Thank you so much! Sometimes this blog is the only thing keeping me sane through the relapse and the whole of the MS saga.
X
No understanding some people. They just don’t get IT. “Just do one” would be my reply. X
Love it! Always horrible to get nasty emails. Bit of a shock, but if my blog is to be truthful and honest about life with MS, important also to show the dissers and people who just don’t understand what and why I write about MS? x
I think people without Ms struggle to understand that you make decisions based on whatever is best for you and that I am sure they would rather blog or watch TV or Look on a tablet rather than do some chore that can be left and will take far less time when you feel like doing it. The difference is that they have the energy for both.
Exactly. I feel rotten – can’t watch tv, can’t concentrate on my book club book. I blog. It’s an outlet.
At the moment, I seem to work, recover from work, then work again.
Plus, working out how another course of Campath will fit into our lives again, lol.
But! Am beyond grateful for the opportunity to have the treatment.
x
These people are clearly nasty, shallow ignorant people who only get satisfaction from being such. Hopefully these are not people you know, if so get rid. Also hopefully they will read these responses and feel some shame;doubt it though.
People who have, or are around someone with MS understand how hard even the simplest of tasks can wipe you out, but how important they can be to do for your sanity. I am firm believer in “use it or lose it”, even if you send next 24hrs recovering.
x
Well said! And exactly my thoughts.
It may seem frivolous to blog about how I feel, when the housework is sliding, the recipes lie redundant, etc, but I’m still trucking on, despite the relapse.
Luckily, those three emails come from ‘anonymous’ peeps. Trolls, probably, with no insight into MS.
I am proud to keep on keeping on. And I will continue to do so until I can’t.
x
Rock on sister!! 😀
Let the haters hate! ;-D
Too right!!
x
I’m so sorry you’re having to deal with ignorant comments like that on top of a relapse! Clearly, those people don’t have a clue how important being able to reach out via the keyboard can be – MS can be quite isolating, so it’s fabulous that there is an outlet that doesn’t involve having to go anywhere!
Definitely. My keyboard is my sanity. Despite everything, I know I can blog and be understood 🙂
x
I will tell give you the advice I give to all the people I know who have people asking questions like that.
There is only one response:
F*ck off to f*ck off and when you get there? F*ck off some more.
You take care of you. Let the idiots drown in their own idiocy.
Wonderful! I love it!!!
x
I can’t believe people can be ignorant or so cruel. If they actually mattered then you’d be excused in asking them to swap lives with you. That would teach them about living life with a chronic disease in tow.
Housework is such a boring occupation that really doesn’t matter. It certainly doesn’t matter as much as having a feeling of well being from ‘letting out’ all those thoughts rumbling in your head that would otherwise expand exponentially until your head blows up! Not to be overly dramatic about it of course.
I’ve just started to return to work following a most unexpected three months at home following lemtrada. I cockily told everyone at work I’d need two weeks off, the week of the treatment and the week after. No one really warned me that the treatment involved being repeatedly run over by a proverbial bus. So rather than doing housework in my post lemtrada week, I slept and slept and slept. After that I quite enjoyed watching the spiders make new homes for themselves and their fly friends.
In all the following weeks I have (for a change), listened to my body and rested, paced myself, gone out for visits to work when able, which was rare until about a month ago.
Throughout my long recuperation my lifeline was writing a short post every day about things I’m grateful for. My handwriting still hasn’t recovered but I can type and I can think of most of the words I want to use. If I didn’t do these posts and have folk respond, I’d feel completely alone and lonely so thank goodness for social media.
Social media is also how I found you! I read your posts avidly and have your book on kindle for holiday reading in a few weeks. I feel I know you, I can certainly empathise with you and often sympathise too.
I was diagnosed in 2009 and it’s taken me until my enforced absence to share my condition with others. I’ve always worried that people would look at me as not so good as they previously thought. That somehow I was failing them. I now don’t hide the condition and enjoy reading people’s responses (that so far have been overwhelmingly positive). Maybe I am a worthy person if others take time to either like or reply to my ramblings!
If anyone should make an inappropriate remark in my company (borne of ignorance not nastiness), I have made up my mind to choose to ignore the remark and carry on talking by asking them about themselves – they usually prefer to talk about themselves don’t they?
So my friend, I don’t even know your name but I consider you my friend anyway, ignore the doubters, damners, and the downright rude. You’re far better than they are. Look what you have to contend with every day to lead a reasonable life. It’s obviously more than they’re capable of. x
What a brilliant response and thank you so much for buying my book!
Yes, people are definitely very quick to judge but I really do hope that with my blog, and others, we can change people’s mind’s?
x
You and the Teenager do so well even with the relapse. Just keep on blogging for yourself and us! Most of us can understand. Take care x
Thank you Sue!
X
Yes, you ARE normal, you DONT have Multiple Sclerosis, or any other neurological symptom (that you know of yet), GOOD ON YOU, BUT WE DO!!! SO STOP taking the piss and leave the MSERS ALONE!!!!
This is what I mean …
x
People who don’t have a chronic illness that features debilitating fatigue just don’t understand. It’s so far outside their experience, they can’t comprehend what it’s like. They don’t understand how someone like you has to budget and bargain and make tradeoffs for every minute of your day.
Being exhausted and ill is, if nothing else, lonely and isolating. I don’t think anyone who reads your blog who hasn’t themselves experienced crushing neuro fatigue would question why you are budgeting some of your little energy to blog. Of course you need to reach out. Otherwise, you are not only ill, but sliding into a very depressing isolation. Sometimes reaching out and staying connected to the world is more important than doing the dishes.
A very good point – the isolation of MS.
Blogging has helped me so much over the years and I don’t think I’d be where I am today without it.
MS is all about little trade offs and this is one of them!
x
Ugh… meant to say “has themselves experienced”… blame the brain fog!
I knew what you meant!
x
You should not be judged. Those people are wrong. Xx
Absolutely. People are awfully quick to jump to conclusions about what it means to have something like MS.
x
I have ms, have had it for 5 yrs. I’m lucky, take dmds daily, my symptoms
Are mainly sensory and balance. I don’t look outwardly ill, I have a family, I work full time because I have to. I’m sure plenty of people think my ms is nothing. But they don’t live my life in my body so those people really don’t have a clue on the impact. People who stand in judgement on others should be ashamed of themselves. I don’t often Post on here as yet. But I think your fabulous. And I think your blog is a godsend x
Thank you so much for your lovely compliment! Made my day 🙂
I guess this is the problem with ‘invisible’ MS. Although it’s definitely not invisible to me, lol. We just keep carrying on, but when we write about a relapse or a flare-up, people are quick to judge about what we should or shouldn’t be doing.
I still feel dreadful but am still going to work – it helps keep me on truck plus my boss is totally understanding. Throw in my raging sore throat and I’m pretty miserable right now! But I’m sure I’ll be feeling back to my normal self soonish. Fingers crossed!
x
There are times the only word to describe utter idiots is ‘f**kwomble’. Say it often enough in a day and you will feel much better. ?
That is superb advice. Superb. It will be my mantra.
x
you are sitting on your butt not really using any energy to make a blog post so f**k em
its a way to blow off steam and get things off your chest, so once again, f**k em
Exactly! Otherwise it all just swirls around my head and I end up feeling worse.
And fellow MSers are a supportive bunch and say it as it is 🙂
x
Dealing with it all with humour and sharing it with others takes away some of the fear I think. It’s the unknown path my ms may take that gets to me and blogs like this just make me feel less alone which helps puts those fears in place
That’s lovely, thank you!
I think a lot of people forget that an illness does not come alone – it shakes up everything. Like this relapse – I’m behind in so many things, I can’t read properly, concentrate, cook, lol. But by looking on the brighter side, it gets me through 🙂
x
There are so few people that understand how those of us with MS manage our limited energy resources. And for some of us, writing or even venting can help cope. When there isn’t the pressure to get something written then the stress reduces. I was a journalist until MS forced me to retire as I was unable to meet the deadlines. But I still write as it keeps the MonSter at bay. I can set my own deadlines – and move them. If I didn’t get to the keyboard, then I’d give up and fade away.
Brilliant, brilliant comment! Writing for me is by far the best form of ‘therapy’. Working through stuff, getting it all sorted in my mind.
And yup, at the end of the day, how I manage my limited energy is up to me. As long as The Teenager is happy, I can sort out what to do with the rest of my time!
Sorry to hear you had to retire, but glad to hear you still write!
x
Yes. This. Absolutely this. Keep your chin up — and please know that you are not alone!
Thank you so much!
x