New to new life

Hello.
This is all new to me. I was diagnosed in March this year and had a bad relapse in April. 7 weeks in hospital and in rehab. I’m only 34 and have 4 boys to be a mum too.
Haven’t fully gotten my head round things as I started rebif in June but ended it in august and now on 18th I start ocreus and hoping it helps. Very scared.

Any advice for the infusions? How do I parent my children. I’m a single mum.

H i

P r i n c e s t r u s t w e r e f a b w h e n i n e e d e d s u p p o r t.

H e l p e d g e t t i n g k i d s t o s c h o o l w a s a h u g e t h i n g.

N o i d e a r e c u r r e nt s u p p o r t b u t m a y b e w o r t h e x p l o r i n g ?
E l

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Hi Mrsross…my, you do have a lot on your plate love. Got any family or friends to help with the kids? You are going to need some much deserved rest and “me time”.
wishing you all the best
Boudsx

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Hello.

Sadly my body rejected the infusion so now not allowed anymore. My body rejected the Rebif injections as well. So now I have to wait for the doctor to decide on what I can try next. I have no clue of what’s about. I don’t want tablets as I’m on enough already.
Just don’t know how to feel.

My parents are my support but it’s wearing them done.

Hi again. I know it must be so hard for you and your parents too.
Wish I could offer better advice.
Much love Boudsxx

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That’s ok.
First time using this place so all new to me.
Sadly stuck in hospital due to my body rejecting life long catheter, waiting for a suprabubic one to be done as urgent but waiting lists are so long it’s so unfair!
Gotta go home on bedrest… funny how I’ll rest when they know I have the boys!
I’ve cried so much today my eyes are so sore! I just don’t know how much more my body can handle!!
My MS nurse is useless… she called me on my phone saying I hear your in hospital… I said yes can you pop down to see me? Her reply was “what’s it’s concerning?!” My flipping health! Argh!
I hate being alone in hospital as no one here to stand by me.
Best wishes x

Oh love. I do feel for you…being in hospital and you’re bound to be worrying about the boys.

I guess you mean you have an in-dwelling catheter…a urethral one eh? I’ve had the supra pubic type for 10 years. Most of the time they are really good. I’m going in soon for a bladder wash and botox, as it is over active.

When are you going home? Thinking about you.
much love Boudsxx

Hello.
Got home late last night. And went and saw my boys and had hugs.
On bedrest today so making most of them being at school!

Yeah I have indwelling at the moment but it’s awful. So suprabubic one I hope will make life much better for me. Also having the Botox to bladder while I’m having the operation done!
How long did recovery take for you?
Did you go back to lifting straight away?

Thanks for talking. Massively helping me :blush:

I bet your boys enjoyed their hugs. Mum is so important to them.
My situation is somewhat different to your’s chick.

I’ve been a full time wheelchair user for many years, so dont do much round the house…like lifting!

But I do think the SPC is miles better than the in-dwelling. Hopefully you’ll recover within a couple of days, but take it steady, yeh?
Boudsx

6 days till operation day! Had pre op so that went well!
Boys are staying away as I’m isolating from tomorrow! So it’s going to be lonely for a long time!!

Sorry to hear you’ve been wheelchair bound. I have one for being able to go out with the boys but I can’t propel myself as it causes too much pain.

Best wishes x

Well operation was yesterday for suprabubic and it caused sepsis for a bladder infection that I had the week before. It was treated at home with antibiotics but they didn’t do the job. I’m now stuck in hospital until the infection is better.
The pain is horrible in my stomach as I am so bruised up, but it’s a working catheter for now! Just have to be careful for 8 weeks so it stays in place or I’ll end up in hospital again!

Speak soon :upside_down_face:

Oh dear - how frustrating and worrying for you. Hope the infection clears up quickly and that you can soon be back at home.

Thank you: yes very worrying.

I’m missing my boys more then ever as can’t even video call as I look awful. :cry::frowning:

Hoping to sleep tonight as still not caught up!!

Hope your well :upside_down_face:

Oh no! Flippin eck! Just not chuffin fair how things stack up against you innit?

I had my bladder washout and 30 botox injections put in yesterday. It all went well…just waiting for botox to kick in now…could take a few weeks the doc said. Had a slight spasm and bypass today…so it aint working yet!!
Best wishes to you for a good and speedy recovery.

luv Boudsxx

It just seems like my body doesn’t want the help. It’s rejecting everything which is making me worse off.
Still in hospital until the doctors decide on what is next as I can’t cope with this pain. It feels like I’m being punched from inside out all the time. It’s awful.

Glad you had Botox ,what’s a bladder wash out. Does that help? How do you actually know it’s worked? Sorry for questions.

Best wishes
MrsRoss

Hi Bouds

The botox will start to work from about 3 days in, building up its effect for about a week, and then will gradually begin tapering off very slowly over months. Hope you don’t get the botox flu. If you do it could easily feel like possible Covid so don’t panic but do do a LFT if you feel flu like symptoms, just to rule Covid out.

Can you not do the video call but have your camera switched off? I presume you don’t want to worry them if you are looking poorly. If you are in a shared ward, then you could say that you’d better not use the camera as there are other patients in the ward who want their privacy protected - that way you’d get to see them and they to talk to you.