Post 761 Rambling thoughts

[RoyceNewton]

G'day Relapsing Remitting ms, RRms friends family and strangers . Again I am concentrating on the Newbies (Newly diagnosed) and the lost. Searching for a cure. That is what we all do at first, it is normal. Who accepts totally at first that they have an incurable, progressive illness. Ok, I did but I am a little odd. My wife claims very odd but she still wakes up next to me most mornings. No, like most people YOU are probably looking everywhere for a way out of this terrible illness. SECRET for YOU, and please feel free not to tell anybody, THERE IS NOT ONE, No matter what YOU do or what YOU take there is no cure in existence.

Relax, do not fear, take a deep breath sit back have a cry and pull yourself together. YOU are going to be alright. It is not all wheelchairs, bedridden and other nasty things, There are treatments, Disease Modifying Therapies (DMT) They are not designed to cure YOU they are designed to slow the progression of your illness. I take one and have for twenty odd years. In fact I have done 3 different types. No, I am not cured but I am still up and moving around, and so might YOU be, so do not despair and just give up. Your life will be different, likely very different from what YOU had planned or even imagined. I will never fly again and I never drive, BUT, my life is good and very happy, and I have RRms. So there is likely no reason you can't as well.

SO, what does that mean YOU may ask. Easy, BE HAPPY, SMILE enjoy time with your loved ones. LIVE and make memories, do not despair this does not have to be that bad. Yes, there are difficult moments BUT your whole life need not be difficult. Get on a DMT right away if not sooner, then find some exercise YOU will stick to, (Eating Pattern) that suit YOU. Make your life livable, there go start living it, You got this. Honestly, YOU CAN DO IT

Royce 👍

This is your life, why not enjoy it..

[Mosmom33]

Thank you, your posts keep me going when I'm feeling down.

[Cwright170994]

Just for more insight: I used to try and study nursing, even though I knew what might happen because I had a CIS diagnosis just before I started. I had to drop out in year 2 semester 3, as I had gotten my clinically definite diagnosis earlier that year and my memory was starting to go. Still managed to work long shifts at a KFC, standing on my feet all day. Moved in with my boyfriend and his parents because I'd gotten a new job that was closer to the KFC I worked at. Still managed to commute, even after we bought our house 😁 had to leave work because my legs were starting to become unreliable and so I didn't feel safe walking to my work. Now, I'm swapping between a wheelchair and a rollator when I'm out of our house. I'm driving for change in the UK, making more areas more accessible, because disabled people's rights aren't being properly met 😞 I'm still surviving though! 9 years since my clinically definite diagnosis ❤️

Was started on copaxone, but was tried on tysabri in 2020. I was only able to take the one dose because a blood test done that day showed I have a high JCV antibody titre 🙄 back on copaxone until April 2021, where I had a status epilipticus event (3+ in quick succession, 5+mins of generalised, more seizures than normal). That got me a 27 day stay in hospital, methylprednisolone drips, and a call from my MS nurse telling me I was going on ocrevus, because my neurologist had enough evidence to show my MS is aggressive 🫠 last year, I got a letter saying that I was able to take kesimpta. I eventually tried that, but wanted to go back on ocrevus. I think the night I had a status epilipticus, was admitted to hospital for a night, and then did my kesimpta the next day, as scheduled, without letting my nurse know got me shifted over faster 🫣 so, that's 4 different DMTs so far. I turned 30 back in September. The boyfriend and I got married in May last year. He's such a sweetie! ❤️ even in his vows, when it came to the "in sickness and in health" part, he joked that he already does that! Seriously, everybody laughed, including me! 🤣

So, your life's not ending. You just have to learn how to essentially take a different route to your goals. You're not alone. Most people will help you. Most people will ensure you are as safe and as well as you can be. Don't leave them out.

[MSFlea]

I just switched from my first DMT, Kesimpta, that had me taking several days afterwards off, because of the side effects (I know it is not like that for everyone, but it was for me) to Ocrevus. Had a lot of infusion reactions the first 1/2 dose, none the 2nd!! Have a few side effects from it, but nothing so bad as the Kesimpta. And I'm so glad I don't have to have another infusion for 6 whole months!

I do use a cane (and am probably/hopefully getting a wheelchair soon), but we really think I was undiagnosed for about 10 years, looking back at the 'disease timeline' that a doctor had me write, I've been putting things on it as things jog my memory. FB memories, surprisingly, have been a huge help in remembering things! 😅🤣I've only been diagnosed for a year. I am super happy to have found this forum. Everyone here is so great. I was on some FB forums (I usually only get on FB for the memories!) and wow, those are depressing. I mean, I like to deal with reality, but also try to stay positive. I've flown on a plane for the first time in 24 years since being diagnosed, even though there's no way I could walk the length of the airport. Accessibility is a wonderful thing.

[RoyceNewton in reply to MSFlea]

Very happy life is good for you. I might suggest lots of water pre Ocrevus infusion, it helps me. Glad things are well and continue to have a happy life.

[kycmary]

Hi Royce glade to hear from you it's always uplifting. Yes MS is doable, takes thinking outside of the box sometimes, but doable. I'm 30+ years now & still going. love ya guy take care of you & your Mrses Mary