Got my lycra 😁: Yesterday, 22/04/2023 at... - My MSAA Community

My MSAA Community

9,019 members β€’ 20,711 posts

Got my lycra 😁

Cwright170994 profile image
β€’22 Replies

Yesterday, 22/04/2023 at 10:00am BST, I got to wear my lycra!!! Got the socks, shorts, and vest top! Had my husband with me, because he took an "emergency" day off to help me get suited up for the 1st time. We went to a supermarket straight after, whilst I was wearing the suit, and I was able to walk back and forth while we got extra bits that we forgot to get on our weekly shop πŸ˜… I'm having to break it in, so yesterday I was only able to wear it for 2 hours, but today I can wear it for 3 hours 😁 On top of that, when he messaged his manager, hubby got a message back saying the manager has managed to get him a laptop so hubby can work from home on "emergency" days off, going against the general rule at his workplace where only managers can take a laptop home πŸ™Œ it's probably because hubby's technically my unpaid carer, and there's legislation helping carers to continue working if they need to take a day off 😁 winner-winner πŸ™ŒπŸ™Œ

Written by
Cwright170994 profile image
Cwright170994
To view profiles and participate in discussions please or .
22 Replies
β€’
MSFlea profile image
MSFlea

That is fantastic, all of it!!πŸŽ‰πŸŽ‰πŸŽ‰I wish we had legislation here for carers!

Cwright170994 profile image
Cwright170994 in reply to MSFlea

Oh no 😱 this is in the UK, so I don't know about legislation in other countries, but there's a big push for giving unpaid carers more support just to cut down on money the government uses on paid carers.

MSFlea profile image
MSFlea in reply to Cwright170994

yeah, I'm in the US. It is awesome that there is so much more government support there. I'm so glad that is there for you! My husband was actually the first in a bunch of layoffs in March, and we really think it was because he worked from home more while I was going through the diagnosis stage. Even though his bosses and the next higher ups were understanding (several of them have family members with chronic illnesses, so they were very understanding!) and said they had his back and all that. (No worries, he was able to get another job almost right away, we just have had to play what I'm calling the insurance tango at the moment! πŸ˜‚πŸ€£But that will be over soon!). 🧑

Cwright170994 profile image
Cwright170994 in reply to MSFlea

And 😱😱😱 cheeky tw@ts!!! AND THE INSURANCE HEADACHE 🫣🫣🫣 I honestly don't know how MS warriors in the USA are able to cope!

MSFlea profile image
MSFlea in reply to Cwright170994

I haven't had insurance this month till this week and they are having.... issues. It's COBRA, where we had to pay for a month of our own insurance, so expensive 😨😱But supposedly it is retroactive for the month of April, and I just have to put in claims for everything I paid for.... But my new insurance starts on the 1st, we had to wait 30 days for it to go through, but then the insurance tango will hopefully be over!

I agree, I really don't know how we manage with this, I'm so new to it! I'm hoping, fingers crossed, that since I've been on Kesimpta for two months now, that the new insurance will approve it. I have the Bridge Program for a year that pays for it all, and they are awesome! But, the hoops the last insurance wanted me to go through makes me a little concerned. Guess there is no sense in worrying, since I will see soon! I'm so glad you have a better system over there!! I just hope that eventually the US will see that it is going about this all wrong!

Cwright170994 profile image
Cwright170994 in reply to MSFlea

I'm hoping the US will get something like the NHS, but I fear there'd be too many people calling out, "BUT MAH FREEDUMS!" πŸ€¦β€β™€οΈπŸ˜’ to be fair, the current PM is looking at having us all move over to insurance healthcare... especially with the state the NHS is in and all the money it needs. This is what you get for voting Conservatives 🀬 I can't wait for the next general election. Hopefully, the country will see sense πŸ™

MSFlea profile image
MSFlea in reply to Cwright170994

I'm afraid that people in the US will do the same. I don't get it. It gives people more freedom, and how they don't see that, I really don't understand. I hope that the move to insurance healthcare does not happen for you guys. That is awful. Hopefully, fingers crossed, your next election (and ours) will prove to be a good one for the people!🧑

Cwright170994 profile image
Cwright170994 in reply to MSFlea

Definitely fingers crossed for both of us 🀞

falalalala profile image
falalalala

That's great!

erash profile image
erash

hi, I’m curious. What is the Lycra you’re referring to? I wear compression leggings to help my spasticity. Is this similar? Thank you

Cwright170994 profile image
Cwright170994 in reply to erash

I think it's something very similar πŸ€” it helps support all of my joints and muscles, it does work at keeping me upright for longer 😁

erash profile image
erash in reply to Cwright170994

Can I ask what brand? Thank you

Cwright170994 profile image
Cwright170994 in reply to erash

I don't know. I got measured up for everything and the company had to make the set specifically for me. Took them a couple of weeks before they were at my physio's, but I'm happy I waited that long 😁

Cwright170994 profile image
Cwright170994 in reply to erash

Wish I could attach the video of me walking up and down the "gym" with my rollator 🫣

goatgal profile image
goatgal

Do tell us more about the lycra. It sounds like whole body compression. Whatever it is, I'm glad it gave you the ability to do something needed or necessary with your husband.

Cwright170994 profile image
Cwright170994 in reply to goatgal

It was made specifically for me. I had to get measured up for it and it took a couple of weeks before it came back to my physio's. It kind of is a whole body compression, and when I wear it a friend commented that I'm clearly a super hero wearing her super suit 🀣 she even suggested that I get a cape, but NOPE! Like Edna Mode from The Incredibles said, "NO CAPES!" 🀣

goatgal profile image
goatgal in reply to Cwright170994

I can imagine it feels supportive and stabilizing as well as at times oppressive. I can't imagine wearing it in a hot and humid climate, because even moderate compression stockings are difficult on steamy days. Lucky for you, you're in the UK!

Mollyabigail profile image
Mollyabigail in reply to goatgal

I agree! I have already given up my comfy leggings, because they are hot in April. And the heat is not here yet in Mississippi. πŸ₯΅

Cwright170994 profile image
Cwright170994 in reply to Mollyabigail

😱😬 I'm still wearing my leggings. I cannot be bothered shaving my legs for shorts/other cool bottoms!

Cwright170994 profile image
Cwright170994 in reply to goatgal

I know! Luckily, the weather where I live is still pretty cold. Think 10Β°C (50Β°F), with wind and rain. I live in Greater Manchester, so the North West of England.

CatsandCars profile image
CatsandCars

I'm so happy for you! Congrats. 😁

Tazmanian profile image
Tazmanian

Yay

You may also like...

Just got my first Moderna vaccine on the 26th

headache, brain fog, not being able to sleep for more than an hour at a time (even though I was...

Got my doggies to their wonderful new home

most difficult time. I got my dogs, Harley and Maddie, to their beautiful new home. It is perfect...

Finally got my referral

So I got a call from UCSF (CA, πŸ‡ΊπŸ‡Έ) I was referred to Dr Xiaoming Jia. He is a Neuroimmunologist...

Got my mavenclad today

While I wait the appeal process I will be able to start my medicine thanks to the drug company. I...

Got my Ocruvus yesterday!

check that I don't take steroids πŸ˜” and waited an hour for the meds... So I just didn't careπŸ˜‚πŸ€£...