Last reply 10 months ago
Desicions …. offloading …

Hi all,

It’s been 7 months since diagnosis and I feel like I have hit a brick wall. Did anybody else get to this point. Initially I was working on panic now I am panicking but in a different way.
It’s starting to sink in this disease thing. New things keep coming up.

I’m feeling a real sense of doom!

In terms of drugs ….
what would you do if you want to try for kids?
Baring in mind I am older and time isn’t on my side. Also I’m Poorly at the moment and need to speak to nurse so ms active or new lesions!
Thing is I’m trying loads of stuff myself like dietary and lifestyle but I don’t feel Time is on my side with the MS.
Also knowing theirs no cure. I don’t know how you cope because I’m not coping. I’ve got to the point where I am not coping very well knowing what this disease can do and their is no cure. I am angry and mad ! And if their is a cure and withholding it because it’s all about the money . It really makes me mad! I along with others are suffering what for some pharmaceutical company ? Maybe not true but if is I’m annoyed! Silencing us! I want to have a normal healthy life like everyone else ! I don’t want to live like this and worrying About progression.

Rachael xxxxx

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10 months ago

Hey @rachellouise

First off big Hug!!! I am a further down the line, I’ve been diagnosed two and a half years now. In terms of a brick wall I think I’ve hit a few mainly when I’ve got loads of stuff going on things to tend to get on top of me and yeah I do panic and feel a sense of doom especially when I see others leading the life I had planned for myself. I have a horrible couple of months recently and I relate to your feelings. But you know what I felt like this before and always come out the other side. MS is an emotional rollercoaster and yeah it sucks! But you will be on the up again so please don’t lose hope. Hope is a very powerful thing. I’m not sure how much help this is, I would love to give your more advice but at the moment I do have any. But just wanted to say hi and to let you know your not alone with these feelings.

In terms of try for a baby my Neuro told me it was fine to try and convince on Tysabri- so hopefully that gives you a little hope. I wish you and your partner luck in starting your family.

Big Hug

Avril xxxx

10 months ago

@rachaellouise , I can see that you’re really having trouble accepting the diagnosis of MS. As suggested above, this journey is an emotional rollercoaster, with several identifiable phases :-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

And, it’s not a direct journey either. You can loop around and revisit phases.

This journey can take up to a year or longer, so go easy on yourself.

Discuss your maternal hankerings with your MS nurse, as this will influence treatment options. Possibly Lemtrada could be the most appropriate, as the drug itself leaves the body in a matter of weeks.

10 months ago

Hey Chick.

I’m sorry you’re feeling like this but you need to breathe. You can’t keep worrying about the what ifs, nobody can predict the future, heck if they could I want to know the lottery numbers 😊. Doing the normal things in life, what is normal for one person isn’t the same for another, besides being normal is overrated 😊.

The things you want in life, you can still have but it’s just going along a different path to achieve them 😊.

I’ve had a crap few weeks, just coming out of a relapse myself. Not getting out the house and being able to do what I normally do peed me off to be honest but bonus was that I got to sleep loads 😊! How I’ve missed my sleep 😊.

What I’m trying to say is concentrate on the now and it may seem like your having a bad day but there’s always some good in it too!

Big hugs 😘! X

10 months ago

Hey @rachellouise, I do get where you’re at. I got diagnosed last Jan and it’s deffo taken me the full year to accept and process it. Although I have RRMS, if feels like the last year has been one long relapse. It seems never-ending and it’s hard to see the ‘remiiting’ aspect of it. The other way to look at it is this. The day of my first anniversary was the day that Ocrevus was approved for Europe. So that became a day of hope. When I feel negative, I say to myself; OK, project to 5 years time, what will the MS landscape look like? I’m pretty sure the treatment world will be much further along. And 10 years time? Who knows. One thing is, reasearch can only keep going forward. All any of us can do, is live in the day we are in and make the best job of it. If you’re knackered, spend the day resting. If you’re having a good day, do something with whatever that looks like for you. Today I feel quite well, but a bit morose. So I just got back from a 15 minute walk in the rain. In 5 years, I might not be able to do that. Or, in 10 years I might be able to do a 20 minute walk. None of us knows what the future might look like, but I went for a walk today because I wanted to and because today, I can. So, from your photo you don’t look old at all! Why not pause baby deliberations for another 6 months or so? Hopefully, you will have featured MS into your life, but it won’t be central to it. And you’ll have a clearer idea about what you want for yourself and your future. I think it was you in a previous post referring to MS Warriors. Well, you are one, don’t forget that! Keep fighting, keep hoping, keep making the most of every day. X

10 months ago

Hi all.

Thanks so much everyone
I know I don’t look old but I am 35 now.
Yes I did say those ms warrior thing your right I did and I want to be a person of hope to myself and others
I just hate it ! Feeling crap and not being able to do anything about ms .. yes I can do self care but I I’m still not feeling my best. I want it to not be here …
@chezy17 – thanks I have been ill like you seem to get everything . Been in bed etc
I never thanked you but I saw the message you put to me at Christmas and it really brought tears to my eyes. Thanks

Can’t believe such nice people out there ❤️ Blessed .

Honestly your all pulling me through because I really have got thoughts of not wanting to be here anymore because I’m always ill and it’s relentless like you said vixen

@stumbler – you amaze me , I know you have it worse than me .
Thanks for reminding me of those stages . I don’t think I have got to the last one

@avrilt – Hugs To You too. Thanks for making me feel less alone and your not alone either …🙏

10 months ago

Take one day at a time chick, we’re all fighting the same thing but we just fight it in different ways 😘.

Omg you’re a spring chicken, I’m 37 this year 😂😂!
I’m currently building a house in Minecraft with the munchkins, funny thing is that have a habit of finding me on the map and messing with my creations 😂😂.

Enjoy the little things and take care 😊.


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