15 Oct 2023 Stand tall be proud in you... - My MSAA Community

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15 Oct 2023 Stand tall be proud in yourself

RoyceNewton profile image
8 Replies

G'day ms family. It is going to be okay. YOU are going to learn to adjust. Your life is not over, perhaps the way it was but YOU will learn, YOU will adjust. This ms thing may set YOU back a little, change your life plans, BUT YOU will get through this. Steel yourself against the turmoils, the ups and downs of this illness.

Suck it up, take the Disease Modifying Treatments (DMT) it is your best bet for a strong happy life. Hide your money from quacks, dreams of a cure are great, but rather unlikely in our lifetime, I am very sorry to say. It is way to late for me but stay strong it may not be for YOU.

Be well my ms sibling, YOU are worth it.

Royce

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RoyceNewton profile image
RoyceNewton
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8 Replies
twooldcrows profile image
twooldcrows

yes we jusr keep on going for this is life ,sometimes have to change somethings to still be able to do it but that is okay for we would do that for if something else happens to us ....we just go on and not let it stop us ...my name for it is a monster that bothers me on some days and not on other days but it will not ever win....love and happiness ..many laughs and smiles and good and bad jokes to help ...hahahahaha...laugh at nothing feels good...

Cwright170994 profile image
Cwright170994

Good morning Royce 😊 it's 7:45 here in the UK. It was cold yesterday, but me and my husband still cracked on, getting all the weekly chores completed together, and he still did the evening cooking! To then us both celebrating our successful day by playing our own games on separate consoles 😁 today's going to be just as successful for us both. I've got a new carer coming today, because my usual carer has taken time off for a Hindu holiday celebration (it's definitely not Holi). My husband is having to complete his work tasks without his coworker, because she's had to quit as her child is no longer able to go to her childminder's (huge case for social workers to work through.) The coworker is having 2 weeks "holiday pay", just to help her get back on her feet and not have to worry about money for the time being, before she is technically jobless. Husband and manager are doing an interview tomorrow for a new coworker. Husband's job does not allow part time working, for some reason, but he is allowed to take impromptu unpaid days off when he's had to come with me to hospital because I've had a status epilepticus event 😬😢 but I've not had one for a while 🤔 a couple of months I think 🤷‍♀️ oh well, I can work with what I've got, and I can keep smiling everyday 😁 (the generalised seizures are a new symptom of mine, and they started in the middle of covid restrictions, so my husband couldn't be beside me when I woke up to give me details of why I was in hospital 🙄😒 he can do now, because my last few I've started the seizure on the toilet at 6ish in the morning. I would wake my husband up because my foot would be banging against the side of the bath. My husband told me of one where I woke him up banging the side of the bath, and when he called 999 for an ambulance, he was told to get me off the toilet and onto the floor! That was funny, because my legs wouldn't support my body, and so I managed to fall between the toilet and the bath! Even the paramedics had a hard time of getting me out! Better than the time before where I practically fell through our bedroom door, waking my husband up, and he knew he needed to get me sorted, a bag with a charge of clothes, and unlock the front door for the paramedics 🙃 I remember my husband saying he'd counted 7 seizures in a row! 😱 my new neurologist asked him to video my seizures so he could see what I was doing. He doesn't usually have a chance, because he's usually pulling my pj bottoms up, thank god I'm usually on the toilet, getting me into the recovery position, and calling for an ambulance. He doesn't have time to video me having a seizure, he just acts on instinct like I told him when we helped his best friend one night after he had a seizure 😅 that night, my student nurse mode activated, and I told husband what to do on our way home. I'm really glad he remembered it, because he had to bring it into effect when I had my 1st, 1 only that time, generalised seizure in late 2019. I'm so proud of him, and I know everyone else that knows of my generalised seizures is proud of him too. Like my mother in law, who didn't think he would chicken out of our relationship in the beginning, when I told him I have MS and simple partial epilepsy. She's proud of him, and is happy that I'm now legally his problem 😜 my mum told him before we even got married, just after we got engaged: I'll be legally his problem when we sign the papers 🤣 Got to take happiness when we can get it. Hold onto those happy memories, because it'll get us through the bad days 🫂❤️

MSbeGone profile image
MSbeGone

Good Day, something I needed to hear. Adjusting to my new normal is difficult, however, I am finally starting to come around.

Snickers1234 profile image
Snickers1234

Thank you so much for your response. I truly appreciate it. I try everyday to be strong. I have been through so much my whole life. Just thought I could enjoy the rest of my life with my husband.

RoyceNewton profile image
RoyceNewton in reply toSnickers1234

good luck an d stay as well as you can, prepare little things to make your life easier, nothing to extravagant.

Royce

Mark1499 profile image
Mark1499

Thank you for your inspiration there are many that don’t have this attitude! You seem to see the glass of water half full!

RoyceNewton profile image
RoyceNewton in reply toMark1499

My friend, I am breathing the glass is way more than half full, thanks ,

Royce

Tazmanian profile image
Tazmanian

I am hoping for a cure tomorrow it's not likely to happen but you never know

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