Its only been a few weeks and I can’t bear it. How am I going to do this forever ? Most people around just dont get it and even my OH who i thought i could rely on seems pee’d off already. Feel hopeless.
Hi Janet, guess you are newly diagnosed, yeh? We, honestly darlin…only a few weeks means you are still in severe panic mode…I felt like that way back in 1997! And yeh, course i`m stil here…in a somewhat different package, but here all the same. And there are thousands just like us.
Being given a diagnosis for summat as huge as MS is bound to leave you reeling. Before I became part and parcel of the disabled world, loads of things felt totally alien to me…like seeing someone in a wheelchair, or using a stick, or as incomprehensible as being fed by someone else, scared the living daylights outa me…probably so for 90% of the people in the word.
Right having said all that, let`s see if i can talk you calmy through what might…BUT might not ever happen to YOU!
Have you been told which type of MS you have? I ask `cos there are drugs for some types and new ones are being trialled and tested all the time…for all types of the little bugger!
Your life wil feel different for some time. The biggest thing is to ACCEPT your diagnosis (if you believe it is the right one that is…mine kept changing!)
You gotta have good support…get some literature from the MS Society…DONT listen to well meaning folk, who will tell you THEIR version of MS. If they havent got it themselves, then what they tell you about Uncle Alberts 3rd cousin on his great grannys side, or Mrs So and So from 2 streets away…they may ean well, but what the chuff do they really know, eh? Not a lot is my guess.
Your OH may take a while to acknowlege your problems…mine did! Oh we rowed and bickered. When I read MS leaflets, he wouldnt and said I was talking myself into it…utter rot!!
So, get yourself an MS nurse…your neuro or GP should be able to help there. MS nurses are usually a font of all matters MS and be a great contact.
Keep talking to us. We`ll do our damndest to support you hunny.
Remember, you`ll probably have good days and no so good days…but NEVER beat yourself up for having a bad day.
Okay…enough from me now. Let someone else get a word in!
lots of love,
Granny Polly aka Boudica…the red haired Warrior!
2 Likes
It’s hard but it will get easier. it takes a long time to accept it, you think you have and then it surprises you with a new challenge. Sometimes I forget and the ms hits me with a big stick to remind me. Family and friends also forget because you often look fine. You just need to be honest when you feel rough and gently remind them to be gentle and understanding.
Be kind to yourself and remember its ok to feel sad
2 Likes
Hey Janet,
How are yer?
Yes, Boudicca’s reply was better than the one I started and deleted. Totally right, so I’ll tell you my version of MS now !!!
I was diagnosed back in 1996, and unlike most on here, doesn’t affect me too much. I adapt, hide it even. I’ve had comments made about me “Look at the state of that!”, when I stumbled into a cinema with a killer headache (though with long hair and ripped jeans, I often get that comment anyway - thanks dad) and evil looks when I sat on a woman’s head at the football…(I left early, and some woman wouldn’t move out of the way, I had to squeeze past her, and lost my balance. The joys of all seater stadium), but you can’t change what people say or think. My wife has greater issue if she hears them. I frankly, don’t care.
To look at me, you wouldn’t know I had this. It’s very mild, but I get daily reminders… Everyone’s cross is different, some lighter than others. Give it time. Took me a decade or so to accept it. My wife read up on it, I chose the emu stance. She’s been with me all along.
Come on here for support if you get it no where else. Everyone is so encouraging/supportive/helpful. (Boudicca rocks, she kicks roman butts you know!!)
Good luck to you, hope it all works out ok.
Take care,
Andy
1 Like
By not thinking of it in those terms. What you have is today, same as always. Just make the most of that and let forever take care of itself. I am sorry if this sounds facetious: I don’t mean it to - I am being very serious here.
Hang on in there. This isn’t a great time for you - you have had a bad shock and have a lot on your plate. (Same goes for your OH, for that matter.) Please believe that you will not always feel as troubled and at sea as you do now.
Good luck.
Alison
3 Likes
Hi Janet
First of all sending big hugs 'cause it’s all new for you and it’s HARD. Believe me though, you learn to live with it because you have to. And Alison is right - you don’t do it ‘forever’ - you do it today, then tomorrow you do it tomorrow. And some days will be rubbish, but there’ll be other days when it’s not so bad after all and life is still good…
Give yourself time, hubbie too, and remember that there’s lots of support and understanding on here. Others have given good advice so don’t be afraid to accept the help that’s available - you WILL come to terms with it all and learn how to ‘handle’ it.
Life is different now - but always precious.
Hazel
x
3 Likes
Thank you all so much for your kindness and taking the time to reassure me.
I hear what you’re all saying and will try to take every day as it comes. I have an appointment with the ms nurse this week and my hubby is coming with me so hopefully it will be a start to us facing it together.
It’s just so hard to accept limitations. I dont want to be looked after. I want to get on with the life I had worked so hard for.
Thank you again, I really appreciate feeling the love and support knowing that you really understand.
Here’s hoping tomorrow will be a good one.
Janet xx
1 Like
Hi Janet,
The first smart-a$$ answer is - One Day At A Time. But I think you have already worked that one out.
The second answer is to come on here every time you want a virtual hug, a rant, advice, etc. There will always be someone here for you.
MS is different for each of us, but there will be someone who has “been there and done that”, and will understand.
Geoff
Hi Janet.
It’s early days for you… I was diagnosed in 2005 and I remember at first I was petrified. But 10 years on things are good. Different but good.
I am so pleased you and hubby are seeing an MS Nurse next week. Make sure you write down all the questions you need answered. I am sure you will feel better once you have spoken with him/her.
Remember, it is not the end of the world when you get diagnosed. Your life will change, yes, as you have to make changes in order to minimise your symptoms as best you can. Hubby will also get tips from the nurse on how things will change but both your lives can still be good.
We are all here for you. We have been through all the emotions that you are and will be feeling for a while yet.
Let us know how you get on with the nurse.
Good luck sweets.
Shazzie xx
My brain’s not providing me with anything useful to say, other than repeating the one-day-at-a-time stuff.
Don’t scare yourself looking into the distance, just focus on the now. Bite-size nibbles so you don’t end up with mental indigestion.
1 Like
Dear original poster… my advice… don’t worry about it.
It sounds flippant and dismissive, but really, what the hell are you gonna do? there is nothing you can do! and even if you could do something, you have more than enough time to get around to doing it, so don’t be in any kind of a rush. Keep calm and carry on.
We live in a messed up world, where every day people have a far greater reason than i, to wonder “why me?”
you have been handed this challenge of MS, just as others have been burdened by ‘the lifestyle of the rich and famous’. we all have our cross to bear. we all must carry our own water. etc etc etc blah blah… to complain about being diagnosed with MS is about as futile as complaining you weren’t born a super model.
this website is awesome. although others will not have the exact same set of symptoms and thus prognosis as you, we all share the similar sense of isolation, frustration and uncertainty.
the test of one’s character doesn’t come when everything is going well and smelling of roses. rise to this challenge and just… don’t be in such a rush.
the very best of luck to you.
3 Likes
You all talk so much sense ! I hate self pity, sorry I went there and for my own sanity I will try not to do it again !
I shall now “buck up” and deal with every new day as it comes.
I have a lot to be grateful for and hey - concession tickets at the theatre 
every cloud and all that…
Janet, we all need to sink occasionally, just not permanently! You need to let those feelings come to the surface and escape, or they’re going to fester like a swamp, and create some nasty implosion further down the line.
You’re definitely sounding a lot better today, anyway 
1 Like
Hi JanetV
You’ve had some really good advice and I’m glad to see that you sound a bit brighter now. I remember feeling the exact same way 6 years ago. I went through every emotion from anger, sadness, denial etc and probably upset a few people along the way. That’s when you find out who your true friends are!
I thought my life as I knew it was over as I was severely fatigued at the time and could barely walk. It took a long while to recover from the relapse that had led to diagnosis and I worried that I would be left in that state forever. The only thing I knew about MS was that it puts people in wheelchairs. Then I found the local MS Society branch and talked to someone else with it and felt better. It helped to talk to someone who knew how I felt. I also found this site and started chatting online to the amazing people on here.
If you read my recent post ‘Wonderful Weekend’ you will see that I now lead a very full and satisfying life and couldn’t have been more wrong 6 years ago. I’m still working (2 jobs!), still enjoy holidays, days and nights out etc. In short, all the things I could do before.
As the others have said, keep coming on here for support. There are so many lovely people on here that do understand exactly what you are going through. Don’t be too hard on yourself. Sometimes we need to wallow, MS is tough, but as someone on these boards used to say, - MS isn’t a road block, it’s a speed bump.
Take care
Tracey xx
3 Likes
I like that Tracey, I may well borrow it !!!
I pinched it from someone else, but I can’t remember their name.
Promise I won’t tell !!!
I love it too, so a wise move in sharing that nugget, Elmo, thanks!
Thank you, Val. Yes it was George. Where has he disappeared to these days? I miss his nuggets of wisdom.
Hi all My partner was diagnosed with rrms in feburary this year after temporarily losing the sight in 1 eye. Since then he has had constant pain in both legs varying from toes shins knees calfs thighs or on a bad day all of the above. After 5 months he has had enough and it is taking a toll on his mood and the rest of his life. We have an 11 month old son and he wont even leave the house to take him park. His mood swings are now getting to me too and he snaps at me and our baby almost daily. I know its not his fault but its not fair on our child. He was prescribed gabapentin and a short course of steroids but neither have worked. Any suggestions on managing the pain so we can have some quality of life again.