Last reply 3 years ago
Progression

Hi there!
I went to see my MS nurse yesterday which was lovely actually. Having a chat with someone who knows all about it is much less exhausting as I don’t have to explain everything!
It was confirmed that I have had another relapse and that MS has progressed quicker than they thought, but hey, that’s ok. I may now walk with a limp but I just give myself longer to get to places! 🙂
I am going on medication as soon as possible as well as having physio and being referred to a bladder specialist. It’s no fun is it?!
I hope everyone else is getting on ok.
🙂

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stumbler
3 years ago

I admire your attitude, @chloeautumnx .

Hopefully, this is the start of a good relationship with your MS Nurse. 😉


jasfromtas
3 years ago

Hear Hear!!! I also admire your attitude!!!

I should try to emulate it more! I tend to huff and puff and curse MS for making me late to everywhere (never mind that my own shoddy time management is probably as much to blame as me crappy mobility).

I hope you get some help with the physio and bladder specialist!


thecuriosity
3 years ago

your attitude is awesome, and i’m really glad to hear your MS nurse and you get along. i think it really helps with having someone you feel you can really talk to.

good luck with the physio, it’ll be hard at first but it’ll be worth it.


chloeautumnx
3 years ago

Aw thanks guys, your words are lovely. I’m still plodding on and getting very tired which is just another bow to add to my arrow of symptoms. I think I am avoiding steroids by the skin of my teeth at the moment but I really don’t want them. Won’t be long until my numerous appointments. Is it bad that I am thinking of getting a walking stick to help me walk?


stumbler
3 years ago

@chloeautumnx , you do what you feel comfortable doing. If you would feel comfortable having the reassurance of a stick, then get one. You can get a vast array of sticks these days in all kinds of colours!

Have a look at this lot :- http://www.walkingsticksonline.co.uk/ . Other outlets are available. 😉

Also, don’t fear the steroids. They’re not the ones that female Russian athletes use! They’re a steroid that the body actually produces itself, although not in the quantity that you would be given.

Steroids are normally prescribed to address an active relapse, which is impacting your quality of life.


chloeautumnx
3 years ago

Hi @stumbler

Yes, I made the tough decision and bought on. It even folds up so it can go in my bag when I don’t need it. Can you still have RRMS and have this level of disability I wonder? It has not yet been confirmed what type of MS I have, just that I have MS. I was just wondering that’s all. 🙂

Also, as far as the steroids are concerned, I have an issue on taking medication, which I now find hilarious as I will be taking it now everyday for the rest of my life.

I am feeling a little low today, reminiscing on what I used to be able to do which I can’t do now and I am only frustrating myself… need to stop NOW.

Hope you are alright!
Chloe x


stumbler
3 years ago

Sounds like a wise purchase, @chloeautumnx . It’s there if you ever need the reassurance.

Hmmm, levels of disability with RRMS. Well, yes, in the past, I’ve had relapses that prevented me leaving the house. But, once in remission, I recovered the majority of it.

And that’s RRMS in a nutshell. It can lay you low with a relapse, but you recover about 95% when in remission. Basically, MS is progressive and degenerative so that RRMS is a bit of a gradual, downward rollercoaster ride.

Whereas, Progressive forms are also a gradual downward ride, but without the ups and downs.

Steroids have a part to play, if a relapse is troublesome to you, Steroids can be prescribed to try and stop the relpase and invoke the remission.

Don’t get too caught up on what you can’t do, just be happy with what you CAN do. They say “success comes in CANs”! 😉


chloeautumnx
3 years ago

Thank you @stumbler!
My MS has not seen a remission yet but I guess it’s still early days. I suppose it is what it is and I just need to roll with the roller coaster! It’s so hard because I used to be so active and then things have changed so much, completely out of my own control. I struggle to walk and walk slowly and climbing stairs is increasingly difficult.
Dear, I’m going on aren’t i? Ha ha, sorry!


grahamjk
3 years ago

Hi @chloeautumnx sorry to hear about you having another relapse. As regards getting a stick I’m glad you got one that’s suits you, mine is like a standard NHS type but it does the job. As for your attitude about MS you’re very much like me, keep a smile on your face even if you don’t want to, it makes everybody around me feel better. steroid’s are no problem you will feel better.XX


chloeautumnx
3 years ago

Thanks @grahamjk, I hope you’re getting on alright?


stumbler
3 years ago

@chloeautumnx , relapses are best kept short, to minimise the recovery time. In an ideal world, that’s what we’d all do! 😉

Relapses are MS’s way of saying that you ignored your body’s warnings so now I mean business! But, once you are relapsing, you need to allow your body and brain the time to get a recovery under way.

So, you do need to switch off by cutting back on physical activities and give your brain over to the recovery. This means cutting back on all mental activity, e.g. worrying about the relapse!

Don’t worry about going on. The more you get it off your chest, the less worrying the brain has to handle. 😉


grahamjk
3 years ago

Hi @chloeautumnx I’m not too bad I start on TYSABRI on 11 March im hoping this helps with my relapses. The only problem is I have to go to hospital every 4 weeks as its on IV drip. As regards your frustration over how you used to be, I used to be a multi drop delivery driver for TNT ( rushing and running about all day) but that’s no longer possible, Ho Hum.xx

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