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Really Struggling!

Hi everyone,

Hope you’re all managing ok in this heat.

I woke this morning and tried to walk the short distance to my bathroom and my feet wouldn’t lift from the floor. I only got there by dragging my feet.

Any ideas on how to deal with this. Sat in front of my air cond machine which is good. Hopefully this will help.

Try and keep cool.

Shazzie xx

Hello Shazzie

The heat is a mobility hazard. My legs don’t want to move either. Not that they are ever up to much, but usually the left one will do as it’s told and the right with the help of FES will at least walk a couple of metres.

The last few days, it’s like trying to drag them through quicksand. It’s not that it’s been so hot for 2 or 3 days, and I’ve not been overheated at all. I can’t count the number of times I’ve checked for a UTI. I’ve actually been wishing it was an infection, because then there’s a definite cause and a cure.

So I totally understand. It’s horrible to be complaining about warm weather in the summer. We are normally all moaning about cold and rain. So I’m trying hard not to complain.

I hope your air con is helping.

Sue

H Sue

I knew you’d be the first to reply. I can always depend on you for good advice and a shoulder to lean on.

Sorry you’re suffering too. You describe it really well. It is just like dragging yourself through quicksand… As you know I have a bag attached to one of my legs that is really heavy when is starts to fill.

My air cond is helping so much. Don’t know what I’d do without it.

Roll on Autumn eh?

Thanks for replying huni.

Shazzie xx

Hi Shazzie,

Sorry to hear your struggling.

I live in the North in a very old house. Still cold up here - wearing socks and cardie at the moment! But it’s only 18’ today so cool and damp.

Haven’t been out in the heat, can’t cope either.

I’ve got a cool spray and cooling towel if it does get hot.

It would be perfect if the weather was always like Spring all year round.

Jen

Hi Shazzie

I had this a few weeks ago. Exactly what you are describing. I ended up in hospital. I was asymptomatic with a uti and a chest infection. A few days of antibiotics sorted it out. Had similar last weekend and asked my gp to dip test a sample for me. It’s was a Friday and I knew I’d be too late for a hospital test and a script if needed. Yes, another uti.

I’ve been given another script in case I need it again.

Hi Jen and Poppy

Thanks so much for replying. Your house sounds lovely Jen. A cold towel sounds lovely. I might throw a towel in the freezer. Be something to look forward to.

Sorry to hear about your UTIs Poppy. I’ve had a few of them over the past year. Hope it’s not another one starting up. They’re vile.

Hope everyone picks up soon.

Shazzie xxx

hiya shazzie

i totally understand what you are saying. this past week i have had to get carer to move my foot-it just wouldnt budge-i usually drag it as you do but it didnt want to be dragged.

i have had 2 uti’s in the past 6 weeks so am blaming that for further deterioration.

i hope you get stronger soon.

ellie

Thanks Ellie,

Sorry you’re struggling too.

It’s so frustrating isn’t it. I want to move but I can’t lift my feet.

It’s reassuring knowing I’m not alone with this.

Fingers crossed when the weather gets cooler our rubbish symptoms will ease up.

Thanks again for replying Ellie. I really appreciate it.

Take care huni.

Shazzie xx

Hi there,

Yep this heat is just about bearable for us SPMS folk. I am sitting here on my throne (relapsing/reclining) chair. Drinking ample H20! Recovering from a dreaded UTi.

I also am experiencing nasty ‘ Bladder Spasms. Any info on on soution’s would be much appreciated. Apparently Botox injections leave you completely paralysis? What do you think?

Thanks…

If you have Botox for bladder spasms, you will probably (almost certainly) be unable to pass urine naturally. So what most people do is intermittent self catheterisation (ISC). Some can’t manage this so they would end up having a supra pubic catheter (SPC). You’d definitely be draining your bladder through some form of catheter.

But before you go straight for Botox, have you tried the various drugs for bladder spasms? Betmiga, or Tolterodine for example? The most common drug is Oxybutinin, but as it’s an anticholinegic drug, it crosses the blood brain barrier and can cause brain shrinkage. Something to be avoided I think!)

But you should get some advice from a bowel and bladder nurse, you can easily be referred, or even self refer.

Sue

i’m so glad i learned how to self catheterise because nowadays i can’t pee the normal way.

i’m doing it 4 to 6 time a day whereas for a long time i was only doing it once.

yippee for catheters!

Sue,

Thank you for your feedback.

My Neuro Surgeon said Vesticare to help. Will chase up Dr for that. Or as you mentioned, Betringa/Tolterodine?

Give Oxybutinin a miss. Stay compos mentis for now! I have a (SPC) which can cause bladder spasms. Are you in the

medical profession by any chance?

​’

Hi, I have no idea whether or not this is sensible, but it works for me when I get extremely hot, 1 large frozen block (the type you use in a coolbox) wrapped in a small towel and tucked into the back of my trousers, obviously do not let-the block be in contact with your skin, happy chilling

i bought a cooling mat for the cat because she was so listless. she never used it and last week had to be put to sleep. i’m sure she wouldn’t mind but i’m going to give it a try.