Last reply 1 year ago

Hiya peeps,

Well the Lamdrada treatment is over, i feel glad that it is over, Although I haven’t even managed to leave my house yet,

But I know that it will take time to start feeling better and that the treatment can’t fix the damage already done, the only thing that is seriously getting me down, is my IIH condition the motion sickness I’m getting from that is a proper crazy, but on the whole I feel more content with how things are going for me.

Hope everyone is feeling good.

Have a great day peeps
Shannon x

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1 year ago

@shazybabe86 , I can imagine it is quite a relief.

Just take things easy now as you recover from the treatment. You have age on your side, so hopefully you will have the neuronal reserve to try and reverse some of the existing damage.

1 year ago

Hi @stumbler

Hopefully fingers crossed pip will take me seriously now as I’ve had 2 relapses since Nov 17 .

Also been out of work since then and I’m still trying to sort benefit as haven’t had money to live on.

My daughter’s 10th Birthday is in a few weeks and I’m no where near having enough money to get her anything.

But I’m still trying to remain positive now!

Thank you for replying


1 year ago

Hi @shazybabe86

Did you find the Lemtrada treatment a positive experience? I was surprised by how uplifting I found it emotionally 😊 Really the whole benefit “system” is a nightmare! Hopefully if they get their act together you might be entitled to some back pay from when you claimed? Not knowing how many weeks is a few, I don’t know if this likely to help you out in the birthday department 🤔 are there any nice museums near you that you could take her to maybe with a picnic lunch? That’s the kind of thing we’ve done in the past when money is tight. On the gifts side of things I don’t know if it would interest you but I bought a bunch of stuff online from Hawkins bazaar to cover a couple of birthdays & some to put aside for Christmas because they have quite a lot in their sale right now. Anyway just a couple suggestions, hope you can get your motion sickness under control asap! 🙂

1 year ago

Aw I couldn’t take anything of you for her birthday.
But my mum has said not too worry too much as she would sort something out,
Also my dad is sending her a gift card as well, so I’ll maybe just give her cash and hopefully manage into town with her and she can buy what she wants,

The plus side of sorting benefits out is someone from the young carers group is coming to help me with filling it out. And hopefully once that is sorted it should be ok,
The claim goes back to the 6th of Dec so hopefully once it’s all sorted I should get the back pay for it.
I’m just feeling fed up with not being able to have a wash on my own, or do house work, I can’t even prep meals at the moment.
But hopefully the future is looking a lot brighter for me,


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