Does anyone else feel that they want to scream but scared to incase they won’t be able to stop? That’s me today. I’m pissed off reading about people on all these different drugs & having varying success from taking them. I’m pissed off listening to people moan cos they’ve got a headache or a blocked/runny nose. What I would give to just have something so simple that a box of beechams flu plus capsules would sort. I’m pissed at having people tell me about the new MS cure wonder drug that’s available now and why aren’t I taking it… aargh just shut up! Stop talking! There is no pissy cure, if there was do you not think I’d be lining up in the queue to get it??
I know it’s people trying to be nice, helpful, thoughtful even but i just can’t be arsed going through the motions of acting like i really give a sh@t… I’ve heard it all before anyway. Aye right in the last 20yrs things have improved so much drug wise which is brilliant. It really is! The damage is done to me though (and yourselves) and none of those drugs would make a difference.
It’s just hard sometimes to keep on faking it like everything’s fine & okay cos it’s not. I’m 37 this year and I’ve lived with ms longer than I’ve lived without it. I’m not old but I feel like I am. Sometimes I feel like I’m just sitting killing time til it’s time for the big party in the sky and it’s sh@t… Ms is sh@t… and life with ms is sh@t.
I actually started to cry earlier today cos I was thinking about the ‘old days’ when I used to walk without thinking & concentrating on every step. When I used to nip up the town and do a quick shop. When I would go to a new place without googling it first to see if there’s disabled parking/steps/where the toilets are etc. When I could just run about like an idiot, do bloody star jumps as and when I wanted too… God, when did it all become so difficult? Sorry for being all heavy and on a downer. I just know that of all the people I could talk to, you lot understand how I’m feeling.
Couldn’t agree more Libertine. Sometimes I get so sick of putting a smile on my face and telling the world I’m doing “just fine thanks”.
Then I count my blessings, I wont list them here because I’m aware that lots of people don’t have some of the good things I have. Enjoy your rant, wallow in it then take a deep breath and stick two fingers at the whole damn world. Thank God for google, blue badges and disabled toilets that’s what I say.
Hi Rosie, scream away you’re entitled. I had a ball of a life until dx at 50 and 8 years later life is crap but at least I’ve had loads of good years.
We went away to Aviemore for a few days last week and I hated not being able to go for long walks. Also wet myself twice through not being able to get to the loo in time. If it wasn’t for the fact my husband needed a break I don’t think I would have bothered as it is just too hard.
There is just so much ms has taken from my life but you just have to keep going as I’m a nosy devil and I hate to think I might miss out on something.
i have came to the terms with the fact there is no cure but it is good that some people will be helped.
Look at all we have to put up with. And at the same time, there is a little man with a hammer. He is the knocker-down. He doesn’t always use a hammer but whatever he uses he does it to smash away at our spirit. Sometimes we are in debt with our spirit so he hits us where there is no defence. We are trying desperately to re-build our confidence and he comes along with a well-aimed hammer blow. Nobody else thinks the little man is there because we don’t look ill.
What can we do? Give in or shout back? I’m a believer in quiet resolve with inflections of fury. I last saw a neurologist in 2011. Is he going to see me again? I doubt it. We have a complete right to feel let down. But we don’t let ourselves down. I’m now less tolerant of fools; they are everywhere. Thankfully they are in the minority though they may home in on us.
Hi, honeslty, I would love just 1 day without relying so heavily on everyone …to have a long soak in a bath…a hot one at that…to take my dog for a walk, to wear heels…to do…oh you know the rest!
Our lives are changed and will never return to what they were.
Like it or lump it…we can do chuff all about it, but being human, we cant turn off our good memories.
Rest well and try again another day…it aint all bad…fortunately!
Well Libertine, just finished reading all that, I could easily have put my name to it…and the responses. You & every one else have put it so well. I’m just another holding your hand.
Like Loulla says Libertine, I am another one holding your hand.
I too caways n identify with all that.
When I am asked how I am, I always say “Fine thanks,you?” I am going to stop the “and you” part. Back it comes. " Oh I have a headache, a cold, my big toe aches". One days the wrong person will get the lash of rmy tongue, I swear! I hope that day doesn’t come.
I would be so pleased to be able to take a tablet and no that that makes it alright. Say like a headache? EVen if you have flu you know that it will soon pass and you will be feeling better. We don’t have that luxury. I always hope tomorrow will be a better day but quite often it isn’t!!
So, what to do? I just soldier on. I try not to think about how I was say 5 years ago. What is the point in that? But even so I do dream sometimes. I tend not to look into the future cos I don’t like what it seems to show. I have never been one for looking into the future though, I just live in the present. Always have. Even as a child I didn’t look forward to my holiday until the day before. Don’t know why, just the way I am. Maybe that is paying dividends now?
So my friends and allies. Just keep stumbling, rocking on, whichever way you do it, just do it.
Like Loulla says Libertine, I am another one holding your hand.
I too caways n identify with all that.
When I am asked how I am, I always say “Fine thanks,you?” I am going to stop the “and you” part. Back it comes. " Oh I have a headache, a cold, my big toe aches". One days the wrong person will get the lash of rmy tongue, I swear! I hope that day doesn’t come.
I would be so pleased to be able to take a tablet and no that that makes it alright. Say like a headache? EVen if you have flu you know that it will soon pass and you will be feeling better. We don’t have that luxury. I always hope tomorrow will be a better day but quite often it isn’t!!
So, what to do? I just soldier on. I try not to think about how I was say 5 years ago. What is the point in that? But even so I do dream sometimes. I tend not to look into the future cos I don’t like what it seems to show. I have never been one for looking into the future though, I just live in the present. Always have. Even as a child I didn’t look forward to my holiday until the day before. Don’t know why, just the way I am. Maybe that is paying dividends now?
So my friends and allies. Just keep stumbling, rocking on, whichever way you do it, just do it.
Enjoy your days,
Anne x
do 't know how I have posted this twice!! Tho sorry for typos, quite difficult today
Yep, I am another who always says ‘fine thank you’ it’s just so much easier and less tiring trying to explain, especially to some people, who aren’t really that interested.
Diagnosed November last year after a very long illness 5 or 6 years .It was 2 year for diagnosis of ppms due to a complicated medical history .Since March I have practically lost all mobility 20 meters of walking and I’m done .Now having to look into buying a wheelchair .So to the point ! I just want to scream and shout until my lungs hurt !
Yep Loulla put it so well I cant even be bothered to write it all out myself. Sorry you are felling crap Libertine there aint nowt I can say that will change anything but I can ask you something thats been bothering me for a while why is Abbreviated such a long word its the only joke I can think of at the moment, hope it makes you smile even if it is only for a nono second.
Not sure if you are a new member on the forum, but in case you are, I wanted to say welcome, lots of lovely people here, with a collective wealth of knowledge, always willing to listen, and offer advice where they can.
Before you buy a wheelchair, ask your MS nurse, GP or OT to refer you to wheelchair services, they will advise añd order you an appropriate chair. Not sure how long the waiting time in your area, as these appear to differ greatly from area to area.
Take care and take one day at a time, it takes a while to get your head round an MS diagnosis, any questions I am sure someone will have an answer, and rant away, it really does help.
Libertine, you can see from all the above that no friends are like your MS friends, because we’re the only ones who truly know what you’re going through - we’re there beside you.
Like Jackie Vanilla, my ‘other life’ is only a few years in the past and still painful to remember. We just have to keep on keeping on, and sounding off when it all gets too much. It’s being so cheerful keeps us going…
‘I can do this’ not an original mantra but it’s got me through many a hellish time. Take care, be safe and we know what it’s like and there is always someone here who knows what you are going through.M
Hiya folks, thank you so much for your replies & nice words. They made me tear up & giggle… You all understand & know so well what I was talking about. I had my ‘tantrum’ & stayed away from the internet, apart from my kindle book list, so I wasn’t being ignorant not responding until now, I just wasn’t on here. You’re all so nice though, it really helps knowing that we’re all in this crappy boat that’s full of holes, just like our myelin eh? But of all the people that get it, it’s you. So thank you two times cos it’s warmed the cockles of my heart reading your comments and I’m back to normal Rosie now, not the raging headcase that was last here x
Ps… Don your blog was brilliant. You nailed it again man!
