Last reply 1 month ago
Risk to self?

Just feeling really low tonight, I had my first MS counselling session today and it brought up a lot of shit. This disease is incredibly unfair and I hate that it’s making me have suicidal ideation. I want my life back, I want to go back 4 months and just have a trapped nerve or diabetes or an iron deficiency. I don’t want to develop secondary progressive MS in 10-15 years..

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shadowfox
1 month ago

Hi Looweeze,
I’m sorry to hear you’re feeling so low. I was diagnosed in June so I’m dealing with a new diagnosis too. Have you started a DMT?
It’s hard to know how the disease will progress for any of us, but treatments have improved so much even in the last 10 years so we can remain hopeful for better treatments in the 10-15year period you mentioned.

It’s hard to deal with the grief of losing the life we thought we might have without MS. You’ve had a shock to the system and if you’ve had a lot of new symptoms and information in the past few months it can feel scary not knowing what the future holds. Just know that there are thousands of people in the same boat with you and we are always here to talk.

I’m glad you spoke to a counsellor, it can bring up a lot of feelings and thoughts but expressing them is healthy. It’s ok to be sad, and angry, and scared, and everything in between. I always find I feel my worst at night when I’m trying to sleep and my brain goes into overdrive.

But I’ve used my illness to push myself to do things I’ve always wanted to do and make my life happier. It has made me appreciate what I can do rather than focusing on what I can’t. I’m 30 now and my mum died when she was 30 (not MS) so I’m determined to do things I love. We can’t know what lies in the future, all we can do is live life to the fullest whatever way we can and adapt when we need to.

I hope you start to feel better about things soon, but allow yourself time to feel what you need to feel. Talk to people, ask questions, and don’t believe in all the negativity. There are people around the world doing amazing things in spite of (or because of) their MS x


vixen
1 month ago

Hello @looweeze, yes, the irony is that embarking on counselling ought to carry a health warning! The fact that people start therapy when they’re already vulnerable makes it really tough to face. Anyways, you’ve done the right thing. The toughest thing is facing that the fact that you may not get your old life back exactly. BUT, you can focus now on what you want your new life to look like. I will be honest, although I resent being lumbered with this monster, the changes I’ve made since diagnosis last year have made my quality of life arguably better. I value time more. I love my home more. I lost tons of weight. I eat really healthily. I’m more able to distance myself from negative people. I don’t get wrapped up in worrying about insignificant things. Try to focus on how you want your life to look, and then focus on taking smaller steps to get there. Please remember that you’re not alone. We are all here for you, as and when you need solace and ‘company’. Stay strong, lots of love x


gijs
1 month ago

With a little bit of luck – you won’t. The jury is still out on how DMTs change the natural progress of the disease, and MS is one of the most studied autoimmune diseases. So, with a bit of luck, things will look differently in a couple of years. (not that they haven’t changed in the past decade or two).


dominics
1 month ago

Dear @looweze,

@vixen is spot on when they talk about health warnings for councelling. I am 2.5 decades in and have never had a positive experience with counselling.

It is likely that the next 2.5 decades will see useful advances in myelin repair and perhaps reversal of damage and the potential to regain function.

Regarding progression to SPMS – nothing is guaranteed for people, apart from death and taxes. A lot is in your hands reharding diet, weight, exercise etc. You do have the ability to minimise the risks. People seem to think that it is a given. It isn’t a guarantee and catastrophising over what may happen is crippling to you, your mental state especially.

It is a shitty thing to have – I know – but if you have a roof, food and wifi then you are ahead of many 😉

In the words of Churchill: Keep Buggering On (KBO)

Best,

Dom


nutshell88
1 month ago

Soeey to know you’re a bit shicked about having MS

Uts not as bad as it seems
It causes low mood because thats where it is the brain but I hope you get over it
I was daignosed in saudi arabia in 2005 I was shocked just like you
But MS never stopped me from living my life best quality
I finished highschool uni visited london NY and been studying after uni in edinburgh 3 years i volunteered at citizens advice and i managed the job quiet well altho im arabian woman
And now i have a job in my country

To beat MS we need to be enthusiastic
When we reach 2019
I reach 14 years and relabsing remetting MS

And ive never tried to treat MS at all with anything but steroids and last time i had steroids was 2014

I hope you recover from this dark cloud you’re experiencing at the moment
As soon as possiblle
In 2010 i thought of jumbing from uostair ending my mesiry
So glad i did not
Because life is awesome 😉


guinness
1 month ago

@looweeze yes its tough, yes its hard to accept ,yes your life will change,but there are hundreds and hundreds of people here on shift that will support you and walk with you through the changes and your fears,you are never totally alone. So chin up, look the monster straight in the eyes and BRING IT ON x


stumbler
1 month ago

And, that’s why I love this forum. We can all get down, but this Forum offers so many hands to pick you back up.

I’m proud to be part of it.


grandma
1 month ago

I’m 62, had the beast for 26 years (that I know of but so many things, even going back to childhood fell into place after dxd) I’m still here, still fighting, anyone and everyone who gets in the way, council, government, NHS, you name it I’ve had a go. This forum, like Stumbler says, makes you proud to be part of, you can rant, moan, cry, celebrate, commiserate, anything you want. We don’t judge, and with ms there is no such thing as a silly question, and usually somebody will have the answer! The first year or so are the most difficult, it takes that long to come to terms with it, but you will learn over time what you can and can’t do, what you can and can’t eat, what sets you off and what doesn’t. Don’t rush it, it will take time. MS is no longer the life sentence it used to be. You will probably be offered a range of DMT’s depending on which type of ms you have, your age and several factors that your ms ream will advise on. Don’t rush and don’t get too stressed, stress is very bad for your ms. We’re always here for a natter, a moan, whatever you want. Keep posting and good luck😍


grandma
1 month ago

P.S. Just re read your original post, when I was dxd, they told me it would become sp within 10-15 years. There were no dmt’s at the time. I eventually got BetaInferon when it came out, and the spms took 23 years to rear its ugly head. Things have changed dramatically since then, so don’t worry, it will probably never happen.😍🤞


cameron
1 month ago

A piece of advice I was given: don’t dwell on possible awfulnesses, because a) they will likely never happen and b) if they do, you will have lived them twice. xx


vixen
1 month ago

@cameron that’s a brilliant quote, tip for life…..


looweeze
1 month ago

Thank you all for you words of encouragement, understanding and realism! On the other side of that storm cloud (just about) and although I’ve had two sudo relapses/flare ups with numbness and tingling since dx, actually these have gotten better slowly. I’m being seen in Cambridge about DMT’s next Thursday and I start oxygen therapy in November.
That was a very ‘why me!?’ moment and then I think why not? This is a lot more of a process than I thought it’d be, thank you for lighting the way ❤️


potter
1 month ago

I was diagnosed at the age of 55 and was told basically the same thing, the neuro said I may have had MS for at least 10 years. I am going to be 66 next week and I haven’t changed that much. I walk a little slower, my feet hurt and my legs go numb now and then but I am still walking. I started on a DMT immediately and have been on one since then. I have had only one relapse in the last 11 years. Everyone’s journey is different I decided I was in a war against MS. After I was diagnosed I started working in my studio more and doing research on all of the latest drug trials. I was going to slow this disease down as much as possible. Potter


sam10
1 month ago

Oh my goodness, what a wonderful place, unbelievable beautiful and practical comment. You are so lucky looweeze.
My stupid closest MD friend 24 ago told me,” I wish instead of theses patches you got a big tumor in your head”. He believed that was my best interest in that time.
To be honest in these years many times I wish it could happen. Now I am completely fit and look healthy with a professional job and great family. Interesting point is noboday knows I have Ms, except of my wife. Nobody.
It all depends what is going on in your mind.


sam10
1 month ago

Comments


californiadreamin
1 month ago

@cameron nice advice. Wish it were only twice 😉


mermaidia11
1 month ago

@california dreamin pmsl!!

Love a bit of ironic wit; and feel ya dude

Ace quote @cameron and comments @sam10

See @looweeze you lived to fight another day! (We all did TF)

…And every day you do, you will feel stronger and happier more positive – (it’s a side effect of bravery and courage) superhero mode will kick in, and you will be grand! The learning curve is steep, but worth it x

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