Last reply 3 months ago
All a bit weird!!

Hi I am new to this. Diagnosed with RRMS 2 years ago. One relapse so far. I guess I just don’t know what I feel. Petrified of the future, angry that it was me but almost free in a way. Does that sound weird? Life priorities completely changed so I don’t worry about the little things any more. And guilt. Guilt that actually I am lucky. Lucky that I’m ok just now and I have nothing to complain about. All just weird. Thanks

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stumbler
3 months ago

Hi @juliepoppie and welcome.

It is all a bit weird, isn’t it? Surreal, almost.

But, it does give you the opportunity to re-appraise your life and value what is really important.


katrinaf93
3 months ago

@juliepoppie this is totally how I felt! My neuro describes me as having 1.5 relapses. They said if I didn’t had the first “big” one they wouldn’t have even considered MS from the 2nd. I thought my head was away. I’m lucky enough to still be quite active and I noticed the numbness in my left leg reoccurring during training for a marathon relay. I constantly heard “aw you’re just injured”, “you need to see a physio, not neurologist” so when the diagnosis came, I was nearly like TOLD YA SO. Before I was also such a worrier and really if I can cope with this, there isn’t much else gonna get the better of me πŸ™‚ we actually seem to be in a very similar position atm.


juliepoppie
3 months ago

It does yes. Nice to know I’m not the only one! Thankyou


juliepoppie
3 months ago

@katrinaf93 it does sound as if we are in the same place. You sound as if you have a good attitude to all this. Do you mind me asking if you have been put on any medication? Thanks


katrinaf93
3 months ago

@juliepoppie aw it comes and goes. Some days I can cope with it and some days I’m very emotional and angry about it so I just take each day as it comes. No medication as of yet. They first found leisons on my brain and spine when I was 17 but I didn’t flare up again until I was 25 when they found 3 new leisons. So becuase they don’t know when during that time period things changed, I need to have another one and then discuss medication. Are you? There seems to be an awful lot of options to consider xx


juliepoppie
3 months ago

I know. So difficult to know what to do. No not on any medication at present. First MRI showed one lesion and few smatterings and some on spine what ever that is. Last MRI year later not much change. You talk about it much to family or friends? I don’t really. Makes it real! But you so right if you can cope with this then you are pretty invincible! Thanks


glawsdan
3 months ago

Hi @juliepoppie

I think I know what you mean. Having been diagnosed and down at the mild end of the spectrum of symptoms at the moment, you are in position of dread because the worst is yet to come (or is it?) and because β€˜MS’ is a condition that could mean you are anywhere between EDSS 0 to EDSS 9, when you are at the mild end you tend to feel guilty even to be associated with those that have the harder fight. Like an involuntary tourist and yet you still have this genuine anxiety for the future. For what it’s worth, I have found mediation has helped in me process the situation.

All the best

Dan


bahamallama
3 months ago

@juliepoppie Yes! I feel all of these things too. And I absolutely detest the uncertainty of it all – being unable to understand and recognise my MS symptoms and signs. Sometimes it can be the sun/heat, but not always and other days it seems to be the cold. On any one given day I can manage to walk a good distance and others I will really, really struggle – leaving me feeling scared of starting a journey/activity that I’ll be unable to complete leaving me feeling embarrassed and upset that I can no longer do many of the things I used to be able to do pre MS with ease. I wish I knew if there was a way I could train to be able to strengthen my body/stamina as I know there are some people with MS who can run marathons. Yet I can’t even manage to walk a small distance sometimes. My nurse said that MS didn’t work like this and instead there was a limited amount of energy available per day so to use it wisely.

I also fear being judged. And now, rightly or wrongly, I see my MS as being a dirty dark secret that no one will be able to understand who doesn’t have MS themselves – my partner, family and friends included and so I try to hide it or don’t admit I have MS as much as possible:
1) As I don’t yet understand it for myself and 2) prior to diagnosis when I was very unwell/relapsing, and fearing I could have MS following my Google searches, my employer decided to start Capability procedures against me as I was struggling to be able to even type. At that time I feared I may never be able to work again. Fortunately I was able to leave that company eventually but the effect of their treatment and attitude toward me and their lack of any empathy or understanding of MS, as well as their ignorance of the Disability Discrimination Act, has scarred me. I even remember at that time saying to the Managers at the capability hearings that I wished I had Cancer (also covered under the DDA), as it seemed more people understood and had an awareness of cancer to be able to identify. For example, would any large sized (or otherwise), employer really start capability procedures against an employee undergoing tests and treatment for cancer that was affecting their health and performance in the workplace? πŸ™

Now that time has passed, i’m also grateful every single day for my health/better days since I’m very aware my symptoms and freedom could be taken at any time and quite unexpectedly.


juliepoppie
3 months ago

Oh it is so good of you all to share your thoughts. Thank you so much. Makes me so angry what you all have to go through with work,life with this. As if you don’t have enough to worry about!!! And rules. This thing drives me nuts with its inconsistencies. There are no rules like if I do this I will be tired because sometimes I am and sometimes I’m not and I feel a fraud. The only thing that seems to kind of reboot my body is sleep. Never slept like I do now. The one thing I found on social media that struck a chord was someone said at least we have time. We don’t know how much time but we do have some. And I can see my lovely husband watching me, seeing if he can spot a change and he too is wondering how.much time. And you are right Maybe we are worrying about something that won’t happen . But may be it will!!! Melts my head! So thankyou lovely people for allowing me to rant! Wishing you a good day xxxx


dominics
3 months ago

Sounds like an entirely reasonable reaction to have.

The weird thing about MS is there is no certain path of progression so try not to mentally condemn yourself. I have been v fortunate which has made the most difficult thing for me (we all experience it differently) coping with the randomness.

You are v v fortunate to live in the UK. Never far from a global centre
of excellence, all wrapped up in the NHS.

Treatments have advanced a lot in recent years so you have far more options.

Life. Isn’t. Over. πŸ™‚

Best

Dominic


stumbler
3 months ago

@juliepoppie , enjoy today. Tomorrow can look after itself. πŸ˜‰


juliepoppie
3 months ago

Thanks all. Oh okay so UK is good yes? I did not realise. Should not depend on where you live surely? I am hoping you all had a good day. Tomorrow is another day. So right.


vixen
3 months ago

Hello @juliepoppie, also diagnosed two years ago. The twists and turns of the journey emotionally, physically and mentally have been something that I feel has been life enhancing. I mean, I wouldn’t wish this condition on anyone, but given that we have no choice, I feel that facing it has made me tougher, less likely to engage in trivial nonsense, and most seriously grateful for friends, family, support and a relatively calm and happy life. It’s not all roses, but every day I see horrible things that other people go through and it makes me grateful that I’m relatively β€˜OK’. I’m proud to be an MS Warrior πŸ™‚


juliepoppie
3 months ago

You are so right @vixen. In everything you say. So many people much worse off than me. Correct and odd that such a thing is actually life enhancing. I really appreciate stuff now. Stuff I did not even notice before like walking my dog and it’s a lovely cold day or a good pillow!! Rock and roll here but before I was too busy rushing and trying to get everything done. Stuff that actually does not really matter.


nutshell88
3 months ago

Since diagnosis β€œ 2004 β€œ untill now I find it weird
As if something is hidden about it
But I kept being skeptical for so long I almost feel I’m gonna lose my mind if I kept thinking about it

I hope rrms lasts for as long as possible for all MSes


breezy19
3 months ago

This is my favourite thread to read so far! @juliepoppie and @glawsdan and @vixen, you guys have nailed my thoughts around my situation also πŸ‘ hooray for fellow shiftmsers!!!


juliepoppie
3 months ago

Funny you think you are the only one with these thoughts whizzing around in your head and we are so NOT. It’s good to talk and all that. Well I think we are all pretty invincible! Even though we don’t feel it all the time!

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