The unanticipated benefit of steroids...

I’ve just finished a 5 day course of high dose steroids. (I actually have the distinction of the label Relapsing Progressive MS nowadays - just unable to take DMDs as too disabled and have in any case run out of DMD options!)

This course of steroids could not have come at a worse time. The weather on the South Coast (Sussex anyway) has been bbbblisteringly hot. Sleeping would have been difficult even without the methylprednisolone to interfere.

So, due to steroids, heat, and general intestinal discomfort (another tale for strong stomachs only!!) I’ve been averaging about 4.5 to 5 hours of very fitful sleep each night since Wednesday last week.

During the last few days though, I’ve been living with:

'I can’t seem to face up to the facts
I’m tense and nervous and I can’t relax
I can’t sleep ‘cause my bed’s on fire
Don’t touch me I’m a real live wire’

(Resulting in me virtually becoming a ‘Psycho Killer’ by Saturday - a little nod there for Caroles Music thread! - Apparently I had become a nasty tempered old witch - that was not actually voiced by anyone in my hearing, but I know it was thought ! And true!!)

Somehow, I’ve managed to: clean the bathroom, make pesto, make Caesar salad dressing, clean the kitchen sink (and the worktops), shred a load of personal bits that have been waiting for the shredder for weeks, trim the frayed bits of my favourite cut down jeans, depilate my hairy legs (honestly - they’ve needed it for a looong time!), shave and grate a big block of Parmesan for the freezer, do some more chopping and bossing around of lovely husband to make nice meals (that were inedible because it was too hot), phone and send emails to many friends. Plus finish reading a couple of books.

Who knew you could be this tired, this hot, this moany and achieve so much? Yesterday was day 5/5 of the course. Today I’m still wired. By yesterday the edge had worn off my nasty tongue (so I suspect I was a little nicer to live with!). I’m just hoping that tonight I can sleep better, with just the hot weather to contend with. Then tomorrow my house can revert to its normal state of semi-squalor!

Just thought you might be interested in the (should have expected all of the above, it’s not as if this was my first course of steroids, I’ve had MS for 23 pigging years!) sorry state of my 'roid rage.

Oh, and the relapse seems to have responded a tiny bit. (Complete side issue, my ongoing orthopaedic pain caused by the broken femur and associated pins and plates in hip and knee has been pretty much non existent for the last week of Mediterranean heat!)

Hoping you’re all doing well, coping with the heat, the thunderstorms, the horrible rain that’s promised for some places that could really do without, and the ongoing problems caused by bbblloody Covid and social distancing. Keep safe, keep each other safe, stay away from overcrowded places (like the beach down the road from me!) and stay well.


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Well Sue, I’ve not been on here for a bit but I’m glad I popped in to have a look at what’s been happening. I only ever had iv steroids twice. That was when I was initially diagnosed and again, three months later with a suspected relapse. Wired? I could have mowed the hospital grounds at 3am and have energy to spare!

Psycho killer I can identify with anyway, just for the fact that my ppms has been turbo charged since diagnosis five years ago.

Glad you managed to shred and trim your frayed bits (!). I never thought of shaving and freezing parmesan cheese. Brilliant.

Hopefully you get some sleep and things cool down for you…in every way. X

Take it easy re steroids, everyone is different. They caused my heart to stop, had a PM since age of 35.

Aw Poppy, lovely Poppy. Thank you for Popping by! (Freezing Parmesan is ace - we always have ‘fresh’, easily & quickly defrosted!) Sleep? Ha, don’t make me laugh! I doubt you’ve had the heatwave to beat all heatwaves in Ireland. But on the South Coast of England it’s hot enough to melt the tarmac.

Sue x

Hello Charlotte,

I’d forgotten your horrible experience with the devils. You were so unlucky. I think it’s unusual to have such a radical response to steroids, but clearly, you are the proof that these strong drugs can be really serious.

If anyone new to high dose steroids is worried, they could get a pulse meter (like the ones they use in hospitals where you put your finger in to check pulse rate and oxygen levels). I got one from that online shop whose name rhymes with Jamathon! (Or a chemist.)

As you say Charlotte, everyone is different. The blessing and the curse of MS.


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And now I’ve reached the next stage in my latest steroid journey.

Why such things always come as a surprise after the number of times I’ve taken the vile little pills I don’t know.

Once the drugs have been finished for a day or two, I always feel like I’ve gone 10 rounds with a heavy weight boxer and I don’t mean a puppy!) Everything feels bruised. My back: just wearing the comfiest bra hurts. Even when I washed my hair in the shower this morning where each hair touches the scalp feels bruised.

Mr Sssue had to dress me this morning while I whimpered. I’m still only partly dressed as putting shorts on was beyond me so far.

Now I feel really sad and low and sorry for myself.

Bring on the next stage. Where I get back to some degree of ‘Sssue normal’.


oh Sue

you poor thing.

Steroids are helpful but the going from ‘wired’ back to fatigue is a nightmare.

back when i had long hair I’d tie it up in hot weather. When I let it down again I used to have cramp in my scalp!

however if you have a large elastic band (our postman always drops a load outside my door) put it over your head, after a few minutes it will start to work it’s way up and it feels so lovely like a massage.

also it saves me from having to kill the postman for dumping his accoutrements on my doorstep.

Haha. Anything above 18c is considered a heatwave in Ireland!

Hi Sue,

Words fail me, but, as usual you have described an appalling aspect of our disease with clarity and without self pity. You really are a gifted writer and educator.

Hi Poppy

Hi Carole (put that postman down)

Hi Carlotte


Hi John

Oh Ssue…what an entertaining if not touching tale! I only had iv steroids once, eons ago, whilst incarcerated in Pinderfields hotel (hozzie in local dialect). It did zilch to my performance…good nor bad.

Why didnt you hire yourself out wi all that housework energy going bonkers? Me corners need a touch of elbow grease!

And whats to do wit colostomy doings? Is it misbehaving?


Hello JP. :slight_smile:

Aw Sue. I’m hoping you feel a bit more like Sue today. You have every right to feel low and down. We all do! Considering what you’ve endured since your leg/hip break and everything in between, I’m surprised you still manage to have your wit and humour.

Mr Sue dressed you while you whimpered…? How dignified are you! This morning Mr Poppy not only had to haul me from the bed and get me dressed, but he also had to tolerate the tears and snot that insisted on falling, at this latest addition to his daily chores.

You’re awesome Sue. Just rest and recover xx