rachaellouise 23/04/18
Last reply 3 weeks ago
Do you all feel supported ?

Do you feel supported with ms and in life practically and emotionally ?

I actually don’t feel this way very muchand feel I need to work on being my own cheerleader …

How do you all feel ?

Rachael

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briant
1 month ago

No I see a nurse every 6 months a consultant every six months and when you ask what can I try they don’t give no solutions they might mention something and then you another 6 months for anything I’m still waiting for physical therapy by the time anything happens it’s to late and my family they say they help but I think they must imagine it even my wife kicked me out because of the wheelchair
Sorry rant over


rachaellouise
1 month ago

@briant

I feel your pain! It’s like when your get sick “it’s not better or for worse anymore and in sickness and in health”
I’d like to think I’d be a rock if my partner got sick …

It makes you think that you can only be on your own because of the daily issues and symptoms, maybe it takes someone special and their still out there …
Or would their be less stress alone. Stress is not what we need …

I think we need others company and connection to some degree too but im working on cultivating my own company and , loving myself, all those things .. confidence , esteem !


stumbler
1 month ago

@rachaellouise , you should be working with your MS Nurse to insure that you have access to the support you need. It should be a joint effort.


rachaellouise
1 month ago

@briant and as for family really that word sounds so nice but mine haven’t been around much …
where have they gone ? Lol
Oh well it makes you see everything more clearly . ..


rachaellouise
1 month ago

@stumbler – I’ve tried they are who they are ! Probably their for emergencies …

How’s the biking going ?


stumbler
1 month ago

@rachaellouise , here’s some details about the roles of these nurses :-

https://www.mstrust.org.uk/a-z/ms-specialist-nurses

Make sure you’re talk to the MS Nurse. I was working with the general Neuro-nurses until I got myself better educated.

The biking is work in progress…………… 😕


mmhhpp
1 month ago

Not really .,… feeling low all the time cause every day i loose sth …. nothing more i can do…[email protected]


nutshell88
1 month ago

As for me I dont like it when my family for example warn me from doing few things because they are afraid of ms.
but I like it when they lession vto what 8
I have to say and when I tell them i feel this or that i dont like it when they reply me noo its not ms while they and i are worried about it they just say that to make me feel peaceful
but in the other hand i wouldnt push them much they know im struggling with it and dont know how or where thats enough suffering they are hiding inside


mermaidia11
1 month ago

You are on it miss cheerleader @rachaelouise!

We have to find the mental strength and resilience within ourselves, you sound like you are there already fellow warrior!

It’s very sad when your family let you down, but that’s our fault for having expectations perhaps ?

It’s a lonely journey and so we have to be our own best friends, if you rely on others; well you become dependent and vulnerable
I’ve done it both ways.
I vant to be alone…!
All things considered, there’s worse things than being alone…

But u aren’t here chick

Take care n keep your chin up x


cameron
1 month ago

For me the greatest loneliness is when I’m with people I’m uncomfortable with. At least when you’re on your own you don’t have to be defensive or, to use the overused word, ‘positive’.


ebaldwin
1 month ago

@rachaellouise

I feel 100% supported, my boyfriends mum has MS so he knows what it’s like ,also when I have my shaking episodes he holds me until it’s gone.Work is amazing they let me sit down if I need to,they also lets me go at my own speed.


fingersandtoes
1 month ago

You’ve got us here Rachael! You’ve got this.

I was diagnosed at the end of November. My most recent relapse was at the end of September, when I was on holiday in Croatia with my mother. I downplayed it a bit, yes (and it was a mild but super frustrating relapse!). It was not-quite-double vision. We had a day trip to Montenegro and there was a town where you could climb the city walls. We were with my mum’s sister and friend who didn’t want to, but I made my 70 year old mum come with me. I really wanted to do it but my loss of vision made me too nervous to do it on my own. I practically held her hand to cross the road.

She didn’t really get it. Then when my appointment was coming up she wanted to fly back across the other side of the world to be with me. I thought why? I’m fine now! (though it took until early November to clear and I did end up in hospital wanting steroids but they wouldn’t prescribe them on my “probable” diagnosis so I discharged myself and decided to be more patient.

This MS thing, it really is a learning process in so many ways. We learn so much about ourselves, we learn to be our own advocates, we learn about others and what their place in our lives is now. My mum worked full time so she really didn’t have time for us to be sick. Hence I’ve hardly taken a sick day in my life – and none relating to my MS. A few years ago my Dad died and the relationship changed I became the carer and not the cared for – as much as I could from the other side of the world. I was in contact nearly daily. She said she didn’t realise what I was doing until six months later – until then she’d been worried about me!

I don’t see this changing again to a situation of her caring for me! But I’ve realised you need to offer something to get something back. Be a little vulnerable. Admit something that makes you feel uncomfortable. Support other people and they will support you. Articulate your needs. Some people will step up.

In terms of medical support, my hospital offers CBT to people who are struggling with their diagnosis and also a group for people in a similar position to me (newly diagnosed, RRMS). I’ve been referred to the group. I really like my nurse consultant, I feel like she’s overseeing my care well and she is supportive of my lifestyle – healthy eating and exercise.

If you don’t feel like you are getting what you need, say something. You may be pleasantly surprised. And if not, come and have a good moan here.


sarahboo
3 weeks ago

Go Rachel Louise.
Honestly after 32 years the bare facts are…..
Only others with MS truly understand.
Thats normal I don’t truly understand other peoples illnesses.
Stay on here!!!you can be angry here and the community WILL understand you can be sad happy depressed whatever you want, ask on this site and a lovely/bitter/angry fellow shuffling innocent recipient of this terrible disease WILL understand.
Expecting others to understand will only cause awful misunderstanding.
You have the right Idea be your own best friend.
I’m sad about anyones diagnosis keep doing what you love Sweetie
Sboo


rachaellouise
3 weeks ago

@sarahboo

I understand that. It can be a bit lonely when no one around you understands but that’s because they don’t know what it’s like.
It’s okay I have hope . The stem cells sound promising to me and trying to get my mind and body back into balance is also what I am doing . Probably take time and a lot of unravelling and big changes but hopefully for the better .

Rachael x


sarahboo
3 weeks ago

My Niece had stemcell stuff done in USA a couple of years ago and she’s is doing great.
I would persue that if I was in your position.
It is a totally gruelling procedure BUT results so far for my niece have been amazing.
Do whatever you can to dump this loser!!
Fight for a better future for yourself.
Much love Rachael ☺
Sboo

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