Last reply 6 months ago
Then it hit me….

For the first time last night, it really hit me that I have MS. I have felt so positive since my diagnosis day, thinking I was happier and just last night, I got really triggered by a thought I was having and I just broke down. Haven’t cried like that since god knows when. Those cries that give you a headache and sends you into a sleep. People say oh the diagnosis is a label and some don’t feel different or that is doesn’t really make any difference after diagnosis, but it does. My life is different now and different in ways that I hate to think of. How people treat you, how people perceive you. It’s unfair, why do people have the right to look at me like I’m a burden? Or like I’m any less of a human? I’m still me at the end of the day. I was just filled with dread last night, thinking about what’s to come. And I don’t think I’m ok.

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rmdaniels
6 months ago

@ettelrahs
It’s ok to let yourself grieve my sweet friend! We all need to cry sometimes. I am glad you shared how you are feeling. I was just diagnosed this year too & it’s hard to hold it together emotionally. So far I’ve only really cried talking to the doctor. It’s hard to say what you’re thinking because you don’t want it to define you. Please keep posting. You’re one of us & we need to hear you!!!


itsmewithms
6 months ago

It was hard to explain but I felt that being diagnosed with MS was affecting me more than actually having MS! With RRMS my relapses were so infrequent and so minor that they really weren’t impacting my life. Being dianosed impacted my insurance choices and costs for sure. It would impact who would hire me for sure.

Now 15 years after being diagnosed and in my mid-50’s is when I could shift into PSMS so I am glad that I’ve done a few things. I worked hard and saved hard. We paid off our first house within 10 years of buying it and saved and invested all the extra earnings. We were in a position over 10 years ago for my husband to stop working (he has US btw) and sold that first house and built our next. This house has all my needed living spaces on one floor (bedroom, bath, living room, kitchen and laundry) so I don’t HAVE to do stairs. I love some of the rooms in the basement though – media and exercise and my sewing space is on the upper floor – but I don’t have to go there for survival 😉

So- my advice is while you are symptom free enjoy life to the fullest and prepare for coming days. I guess that advice is no different to someone without a MS diagnosis but I say it with greater urgency. 😉 Live each day to the fullest-


nikchez
6 months ago

I got diagnosed in 2012. This year has really hit me that I have MS. I never used to tell people as straight away people would say ‘hows your walking?’to look at me you wouldn’t have a clue that I have MS. It has really hit me this year! Ive had2 relapses in 6 .months. Fatigue has hit me hard this year. I can only do one thing a day, I’ve been at my friends few hours today and I’m exhausted. I used to run 5k. I’ve had to ‘mourn’ for the person I used to be. Sometimes feel like screaming and shouting that life is so unfair!!!
So yes it is absolutely fine to cry and deal with it in the best way for you. Nicola X


jayjay10
6 months ago

It is perfectly normal to have those moments of feeling emotional, most of us have been through it. I spent a lot of time locked away in my room when I started to feel the effect of the diagnosis, I found myself neglected away from everyone else as it had suck in. After time I started to become more knowledgeable on the matter and started to realise that perhaps I may have overthought things. Yes, it hits you when it sinks in but you will gain mental strength and start smiling throughout the day like you use to.

I wish you the very best.

Regards,

Jay x


nutshell88
6 months ago

I cry every now and then when I feel my body is unable to process simple tasks
i saved my self hassle never told anyone i git NS since 2015 humans are judgmental
i left them confuse how does she look perfectly fine but can not do these things
my luch MS is not common here so most of them doesnt know whats what about me


keepsmyelin99
6 months ago

Hi @ettelrahs !

I’m so sorry to hear you’re not feeling okay at the moment.
I am newly diagnosed this month and strangely, I feel like I ‘grieved’ for my days of ‘normality’ when I was still going for diagnostic tests and scans. However, the wonderful thing now is that I am getting the right help and I’m already feeling better.

Instead of mourning the things I might one day not be able to do, I’m celebrating the things I can. Three weeks ago I couldn’t put my own shoes on but now I can put my shoes on and go for a little hobble in them, which will soon turn into a stroll, and then maybe a brisk walk. I’ve also decided to make an announcement of my MS so that I am in control of the information that people receive when they learn about my disease and that way I can limit their reactions and responses.

You’re right about labelling. This year I left University for the summer as any other student would but now I will be returning as “disabled”, whether I look it or not. It has taken some getting used to, and I’m sure it won’t sit too comfortably for a while, but I’m not going to view it as something that takes away from the person I was before. It’s an added extra. A complimentary upgrade. I am having life for dinner with a side of MS! We are more than human for being able to put up with life’s great challenges as well as dealing with MS every day. We’re superhuman!

But as far as emotion goes, you are right to let it all out. Sometimes you’ll just BE angry and you can’t change that. And other times you might be satisfied with how you’ve hidden your MS and appeared as the You you were before. But most of the time, I hope you are proud of yourself for all that you have achieved, overcome, and aspire to do in your life <3

Always here x


Anonymous
6 months ago

@rmdaniels @itsmewithms @nikchez @jayjay10 @nutshell88 @keepsmyelin99 – Thank you all for your responses, its nice to know I am not alone in this. I’ve been doing pretty well but it’s just things I’ve noticed that are different, not only with me but with others around me and those who I interact with. I’ve been feeling like this whole diagnosis is just another barrier that’s stopping me from doing “normal” things that someone without ms does have to worry about. I’m honest and sometimes I think too honest and people just don’t know what to do with it. I see no barrier but its others making those barriers for me instead and I’m like WHY?! – more so lately I have been having terrible dizziness and vertigo and finding myself having to actually slow down otherwise I literally find myself on the brink of passing out. I have had a 24hr ECG just in case I had something wrong with my heart (as I have HSD and POTS is a common condition with that). But I had the all clear which I’m happy about but now I know its because of the MS and the demyelination and such, its just become ever more so daunting. I live as open and active as possible, but where I don’t see a barrier, others see barriers for me, what do I do in that case? Frustrating!


nutshell88
6 months ago

sorry since 2004
15 years ago = cognitive :/? or simply unfocused


rogersouthall
6 months ago

ettelrahs people deal with thing in all ways and some have various levels of MS so the way you deal with things is perfectly acceptable, you have a group of people here that give you support and understand what it is all about
http://www.wholesorts.com when I was first diagnosed my life changed and you may find some of what I have written helpful, but importantly my life with MS is documented.
I wish you well


keepsmyelin99
6 months ago

If you don’t see a barrier, then come on through my friend 😊

If others think you’ll struggle to do something but you feel able, prove them wrong! As long as you don’t overdo it and tire yourself out then you can use your determination to your advantage.

It’s only natural people will want to help, but a lot of the time they might offer to do things you feel capable of, which can make you feel underestimated or perceived as less able. If you can think of other ways for them to help you, or even just say that you value your independence and want to do things unaided then that might help.

Obviously don’t overdo it, but keep showing those people you can jump the barriers! Also, I sometimes get vertigo and I find that plenty of cool water helps, especially in this hot weather.


vixen
6 months ago

Hi @ettelrahs, I echo every5ing above. But also, be kind to yourself. This is very, very new and most people here would tell you that you need to take up to a year to fully absorb the diagnosis. Stay strong, and face each day as it comes without worrying about it in advance. You will be fine, but don’t forget to live fully as you go xx

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