MS Society UK | Forum

New member in your club

Hi anyone and everyone

I sincerely hope today is your better day.

Not sure how to start…Hi, my name is Hana, I’m 53 and I’m pretty new to any online socialising. It’ll be lots of try and errors as just looking through the site is overwhelming. I’m sort of Dinosaur when it comes to any technology.

I’ve been finally diagnosed with RRMS about 2 years ago, though I have had my suspicion that it might be MS as there was nothing else any Google research suggest otherwise, I presume just like for many of us. And here we are all members of the MS club we have not even complete the application form with me being a new addition. It seems the ‘membership fee’ is extremely high, wouldn’t you say?

As shocking and difficult to come to terms with it, the ostrich pose, a head in the sand, was not plausible in long terms. Life is too precious and short to waste any good quality times one has been given.

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So true. I don’t remember applying either. The entry fee is high and non-negotiable and the member benefits are paltry. But here we all are and life is remains precious and there are always good things to appreciate. They can be easier to spot when one’s ostrich head is not entirely buried, but that becomes easier with time. Welcome.

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Hiya,
Hope you are as OK as you can be. Enjoy the good bits and try to learn from the not so good bits and allow yourself a small rant at the really crappy bits, just don’t let “it” define you.
All the best
Mick

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Hi,
Welcome to the site that no one wanted to join.
Top tip - keep a symptom diary along with any treatment/appointments and outcomes.

Look after yourself.

Jen

Hi Jen, Thank you for your welcome and the top tip - keeping a symptom diary. May I ask you, should I be recording all, regardless severity and length of the time they last? Sometimes I’m having some minor ‘troubles’ lasting moment or two, do I record these as well. I tend to ignore these, do not like to dwell on those if I can carry on for the rest of the day or is it a bad policy? Thank you and have a nice evening.

Hi Mick, thank you for your friendly welcome. My life is busy and I feel I do not have time for MS, I have had so many plans but now after my latest relapse couple months ago, I realise how precious and unpredictable this illness is and how much more I need to appreciate the good things as you have mentioned and how important it is to learned form the ‘bad’ bits as I somehow ignored the earlier signs that something is not right and I believe I’ve paid price bit later on. Wishing you nice evening. Hana

Hi Allison100, thank you for your warm welcome. I’ll hope I can get more grip with it, listen my body and accept that there are times one needs to take it easy. Have a great evening.

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Hi Hana, I’m new here too and, from what I’ve seen, it seems like a good place to start if you’re new to socialising online. I’m a little older than you (60 at Christmas) though I’ve had MS since 1987. It’ll bring you a few challenges, but I find the important thing is to be up for them and face them head on. Don’t be an ostrich; god knows I was and it got me (worse than) nowhere. Be kind to yourself and stay as well as you can. Eat well and sleep well and take exercise when you can x

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HI,
I just keep a record of symptoms that last a couple of days or more. I had trigeminal neuralgia - like toothache a couple of years ago. Lasted a couple of days then went -haven’t had it since.

When I applied for PIP the diary definitely helped as I scanned all the pages.

Hope your MS behaves itself.
Take care
Jen

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Hello Hana

Welcome to the forum. You’re so right, membership fees for this club are sky high and it’s not even as though any of us had the choice. Like a tax.

Personally I can see the attraction of the ostrich pose, but realistically it’s not sensible.

You’ve not said whether you’re taking a disease modifying drug (DMD). It is generally accepted that it’s a good idea for everyone with RRMS, but clearly, it’s personal choice. If you’re not on a DMD and want more information about them, have a look at MS Decisions aid | MS Trust

Best of luck.

Hi Wazzy, thank you for you reply and your wise advice. We truly have to look after ourselves. Wishing you Happy Birthday, enjoy as much s you can. Best withes H

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Hi Ssssue, thank you for your welcome and link to possible treatments available.

I’m on Copaxone for about 6 months now. I felt I need to take more control of my MS in addition to other changes in my life I’ve already taken on to manage my MS better.

Even though ostrich can run fast, you can’t outrun MS once it gets hold of you.

I quickly realise one can not hide. I have to learn to live with it, we all do. I do not want to have any regrets along the way. That’s my outtake on this challenging situation.

Best wishes