Forum

Having a moan

Hello everyone,

I am sorry to be doing this but i need to vent. I was dx in Feb after a very bad relapse which left me in hospital. Managed to make a good recovery, left with mild tremor, mild balance problems and cognitive difficulties but overall so much better.

Then about 6 weeks ago - BAM - another relapse. vertigo is back again, tremmor really bad, eyes gone all blurry - i could go on but i wont. I resisted steroids as my mobility was not effected and my nurse agreed this was the best idea as they are quite potent drugs. Saw my neuro last week which boosted my spirits for a while, he suggested even though i’m 5 weeks into relapse i should try the steroids as things are not getting better and im going to start DMD’s soon, so hopefully i wont need anymore for a while all being well. So started them today, i’m sure they will bring there own set of ‘fun’ side-effects and i am just fed up with the whole bl**dy thing.

I have felt like rubbish for 6 weeks, fatigued, grumpy, in constant pain all the while having to carry on as normal as i have no choice but to with the kids to take care of and a husband who works full-time. Family and friends try to understand, but they don’t really get it do they? If i hear one more person say ‘oh yeah im a bit tired too’ i wont be held responsible for my actions!

I try and be positive and i know it will pass in time,and that i have it easy compared to lots of people, just finding it hard to find the extra cheer today and thought if i had a good moan you would all understand where i’m coming from.

Hope you are all having a better day, again sorry for all the self-pity!

Laura x

oh laura, dont apologise on here

we’re all used to ranting.

are you taking oral steroids? or iv steroids?

be aware of the mood swings that occur following the course.

its normal so dont beat yourself up (or anyone else)

rest up and be kind to yourself

carole x

Hi laura, nothing wrong with a good moan.

It sounds like you have so much to cope with at the minute and people just don’t understand the fatigue side of MS

its funny but a friend said to me the other day that we should give it a special name, but to be honest the only ones I can come up with would be unrepeatable :slight_smile:

Anyway I thought I’d say that when life keeps kicking you theres nothing wrong with kicking back every now and then.

Wendy x

Hi laura, nothing wrong with a good moan.

It sounds like you have so much to cope with at the minute and people just don’t understand the fatigue side of MS

its funny but a friend said to me the other day that we should give it a special name, but to be honest the only ones I can come up with would be unrepeatable :slight_smile:

Anyway I thought I’d say that when life keeps kicking you theres nothing wrong with kicking back every now and then.

Wendy x

Hi, Check out ‘The Spoon Theory’ …quite useful in explaining fatigue. xx

‘The Spoon Theory’ offers a really good description of the realities of fatigue. x

Hi Laura, I’m right there with you, diagnosed in February too. Sometimes you just need to let it all out, thank goodness for here. Sam xx

Hi Laura,

I guess that must mean you finally got it sorted out about the steroids/dose, then? Had there been a mistake, as suspected?

I’ve never tried them myself - I think partly because I never really wanted to, but partly because most of my relapses happened before I was diagnosed. Mostly I’d just ignored them, blaming, bugs, stress, hormones, whatever, but the few times I stirred myself to go to the doctor, we never got to the bottom of it either, so the issue of steroids just didn’t arise.

Anyway, I hope yours start working for you pretty soon.

Yes, it’s very hard when you look normal. I often think it would be much easier with a broken leg. At least with a great big cast on your leg, it’s obvious there’s something the matter, and people don’t need it explained why you can’t do “normal” stuff.

I’ve sadly fallen out with my oldest friend, over inane remarks like: “Isn’t it lucky you’re unaffected?”. I’m convinced she thinks still owning a lipstick is proof there’s absolutely nothing wrong with me. That and the fact I had just two evenings out, in almost a year. I was finding myself having to defend that, as if being out socially at all, ever, meant I must be exaggerating.

Well, maybe I’d expect that kind of tripe from a benefits assessor, who’s job it is to root out faking, but not from a supposed best friend. I shouldn’t be having to justify that I still go out on special occasions. Once was to the Olympic Closing Ceremony - a once-in-a-lifetime experience, and the other to see a friend not seen in over 30 years - again, not something that comes up every day. So I’m hardly out painting the town red every night, then moaning that I’m ill.

They just don’t get it, do they?

Tina

x

Thanks everyone, it is hard work trying to be positive and do feel a bit better for my moan!

I am taking oral Methylprednisolone (yes Tina got it sorted, it was a typo!) which i have had once before and it turned me in to a moody cow (more than usual anyway!) so good times ahead!

The spoon theory is a good one, never seen that before so thanks - i will pass it on to well meaning commentators and if they still annoy me i will hit them with the spoons lol.

Thanks for letting me rant, it was much needed x

hi laura

steriods send me thr the roof then crashing back down again they really affect your mood, and having kids and ms can be really hard too when fatuige kicks in, I find that the hardest when my 2 yr old is running round and i can hardly get up off the couch,

sue

x

Hi Laura,

I know how you feel. Its not easy at all.

I am currently going through a relapse myself…I had no idea!! It only came to light when I went to see my neurologist. Straight away he said I’m walking funny, look exhausted and unwell. He is a mind reader!!!

So no I am waiting for an MRI and course of steroids with an appointment being made for me to be put on stronger meds. Let me tell you, steroids really help. I had a bad relapse last year and within 3 days I was almost back to normal…I had the drips, not nice having it at all…

I know it will get better…

Hardeep

Hi Laura,how are you getting on with the 'roids? Hoovering at “What the Ef o’clock” is a known side-effect.

As for other peoples’ attitude, what I say is…" MS,if you haven’t got it you don’t get it ! "

I never say fatigue,'cos some folk think they can relate to it,so it tends to be, "Shattered, or like your worst ever hangover,knackered with a capital F,weak as a poorly kitten,etc blah blah

Wb x

look have your moan because guess what we know where you are coming from, fatigue i would rather say total wipe out, plus after I have my moan i usually feel better

trish

buzzes into forum****

yeah doing alright, got lots of energy, want to talk to everyone, can’t sit still, already cleaned the floors, bedrooms, bathrooms and kitchen top to bottom and was about to do some gardening but it started to rain so i came floating back inside and helllooo here i am! Think the kids are a little concerned Mr P has taken them out for the day…probably best!

I know this is pseudo energy and i had better be careful as i WILL come crashing back down but it’s the first time in 6 weeks i have had any energy so i will go with it today and restrain myself tomorrow. Just can’t sit still! Im sure there are people out there that would pay a fortune to feel like this

buzzes into forum

yeah doing alright, got lots of energy, want to talk to everyone, can’t sit still, already cleaned the floors, bedrooms, bathrooms and kitchen top to bottom and was about to do some gardening but it started to rain so i came floating back inside and helllooo here i am! Think the kids are a little concerned Mr P has taken them out for the day…probably best!

I know this is pseudo energy and i had better be careful as i WILL come crashing back down but it’s the first time in 6 weeks i have had any energy so i will go with it today and restrain myself tomorrow. Just can’t sit still! Im sure there are people out there that would pay a fortune to feel like this

?

I did reply earlier, my post has gone into the ether?

Feeling full of beans, nice to feel energetic…i know it’s pseudo and will crash soon but for now im enjoing it!

Hi Laura,having had more 'roids than a Russian weight lifter over ten years I know all about the beans.I know you’ll probably have a list of things to do ,but prioritizing is the key.As the doseage decreases try and cut down your activity and be mindful of any other drugs and their doseage.

Easier said than done but the “Steroid Cliff” can be managed. Don’t forget the gutters and that carpet underlay can’t clean itself,

Be busy,

Wb x