Last reply 2 months ago
Newly diagnosed

Just found out I’ve got MS. I don’t know how to feel. Some days I’m fine and then others I just want to cry. I feel I have to play it down as my family are worriers. I’m waiting to hear from the specialist nurses. Just feeling a bit lost at the moment. Trying to carry on as normal for my 2 young kids. Just want to say hi and have a little rant. Thanks. Also currently on a night shift, which doesn’t help!

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stumbler
2 months ago

Hi @pinny and welcome.

Being recently diagnosed has plunged you into an emotional maelstrom, You will feel up and down, until you fully understand the implications of this diagnosis and see that life will carry on.

MS is not a death sentence. Or an express, one-way ticket to a wheelchair. It’s not the condition that it used to be as there are now treatments to help you manage it. The Specialist Nurses will provide this reassurance too. If you don’t hear from them shortly, then give them a courteous call to chase them up.

Night shift and two young kids isn’t an easy combination for you, so you don’t need this additional worry. Don’t randomly Google. Stay with creditable websites, like the MS Society or MS Trust. In fact, the “Newly Diagnosed” section on this webpage will be very useful for you :-

https://support.mstrust.org.uk/shop

In the meantime, live healthily, eat healthily and do try and avoid getting stressed. I know, trying to achieve that whilst on night shift may not be easy, but it’s something to aim for.

You have age on your side. 😉


pinny
2 months ago

@stumbler thank you for the message and the support


grandma
2 months ago

@pinny hi and welcome to our exclive club. You are going through the 2 nd most difficult time with ms the 1 st being Limboland and you’re out of that and heading for the sunshine. As our good friend Stumbler says, ms is no longer a life sentence, don’t stress, stress is one of the worst things for ms. We’re a very diverse community, whole range if ages, types of ms etc., I’m 62 and have had the beast for 25 years, in my day there weren’t any dmt’s, I get the first, Avonex, 23 years ago and have just in the last year moved to Tecfidera and a mobility scooter. My only child was 14 at the time and had a normal childhood, she’s Is now a mum herself and obviously by the Monika .I bought my grandaughter up, taught her to read, swim etc., there is very little you can’t do. Your children will accommodate you very easily. They might have to learn to be a little more thoughtful, letting you nap when necessary which will mean that when youre up and with it you can still take them to the park, to the shops, swimming etc., with us you can ask questions, huge range if experience here,experts in everything both to do with ms and almost anything else. You can have a moan, rant, celebration, cry, whatever, we don’t judge and are always here for a natter so sit back, have a cuppa, fabulous Christmas break, don’t worry about anything. When you get an appointment with your ms nurse, make friends, she will become the most important person in you life. Remember, with ms there is no such thing as a silly question, and I’m only just down the road in Stoke so there are friends both near and far🥂🤞😜😍


edmontonalberta
2 months ago

@pinny

First of all, listen to @stumbler – he knows what he is talking about… And feel free to rant when you need & ask whatever questions needing answers; I guarantee someone here has experience / knowledge!

On a side note, MS is a death sentence; of course – being born is a death sentence. The only thing that matters is the quality of life along the journey.

Two young children? Congratulations!!! Raising them is the same whether you have MS or not… A family of worriers actually is a bit more of a challenge. You need to set ground rules that they MUST accept.

I find the easiest way to deal with others is to be honest. MS is no big deal. I am the same person with the same likes & dislikes; that has not changed. If something physical occurs where I need some accommodation, I will let them know.

Otherwise, do NOT under any circumstance treat me any different; if they actually care about me, they will back me 100%. I have had many people tell me that they are impressed with my attitude – I respond “thank you” then change the topic.

My life journey is still fun; if you approach things right – yours will be also… 😉


vixen
2 months ago

Hello @pinny, sorry for all your trauma. It’s important to allow yourself to feel all the things you’re feeling, and not to rush yourself through processing things too quickly. Work out what you feel you need by way of support and this will change as time goes on. I felt I got to grips with things fairly quickly when diagnosed two years ago, but when I look back it probably took a year. In that time, I changed my diet, my routines. It’s also important that you rest adequately. I presume that you work nights to fit in around kiddicare so as the kids get older that’s something you might need to think about. Anyways, lots of support here, enjoy the Christmas holiday with your family and spend some time focusing on You x


chezy17
2 months ago

Hi Pinny.

Let yourself feel this way then get up and shrug it off! It isn’t a death sentence, nor does it change who you are as a person nor your goals. Ok, you may have to tweak them abit but don’t change them.
I have 2 young children, 6 and 11 and I parent no different except I have more time. I work but I don’t sweat about the small stuff like the tidying and the cleaning. If it means that I have extra energy for them then it’s them I pick! I go off on bike rides, on walks and camping trips and I do it myself! My MS hasn’t changed that in fact it’s just made me concentrate on what’s important.

Smile, enjoy the hols 🍻. X


glawsdan
2 months ago

Hi @pinny

Your post reminded me of how I felt when I was diagnosed, two young kids and a family whom you want to protect.

Please really take on board Stumbler’s comments about it not being a death sentence or a one way ticket to a wheelchair. If you are anything like me, these sorts of messages will make sense but be hard to process as you are in the maelstrom. The thing that helped me (I am sure it wouldn’t be for everyone) was getting a handful of sessions with a counsellor. I found the fact they were professional and a complete stranger meant I felt I had licence to let it all out, my fears/tears etc. I could voice anything and did not have to see the reaction on my loved one’s faces.

It might not be for you, but worth considering, maybe a friend could be that someone?

I feel your anxiety and know you’ll get through this.

Dan


pinny
2 months ago

Thanks guys for the replies. I am a nurse but work in neonates so haven’t cared for anyone with ms. But u know what they say about nurses as patients.


lightning87
2 months ago

Welcome!! I am only 6 months post diagnosis so fairly newly diagnosed myself. The key is to stay positive and remember no one knows what is ahead of them, even without MS. Stay strong, rest when you need to and let yourself have your sad moments about your condition, it’s allowed xx

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