I am so sorry everyone, I really am. My last post was seriously unjust and unreasonable. I’m very ashamed at myself for posting that. It’s doesn’t excuse it but I can only be honest with you all… I’m scared I really am scared. It’s 18 years this year I was diagnosed, it’s my birthday on Saturday and I’m 36. I’ve had this msenemy for half my life and it’s eating me alive. I fight but it’s relentless. It keeps on taking bits of me and I never get them back. I wasn’t meaning the anger at you, but that’s the way it came out and I really am so so sorry!! I’m scared an I’m worried about what’s happening to me. I’m losing me! It doesny matter if I fight it’s relentless. I’ve nothing left of me, the Rosie I used to be.
Rosie welcome back! No need to apologise. Nobody is upset. We all know how you feel, and I suspect everyone was more concerned about the bad place you’d got your head into and that we couldn’t help in any way. Forums are strange places, I think it’s because, as with emails, you only get text and no body language or subliminal messages. It’s quite a brave thing to venture onto a forum because you are opening up to an invisible crowd of people who you don’t know. If you don’t get replies you feel like you’ve upset people or scared them off or annoyed them or…or…or. You just don’t know. It’s an even braver thing to do what you’ve done today by coming back on. I’m glad you did. You’ve had it really tough, certainly a lot tougher than I have, I only started my illness four years ago and I’ve had much more of a shot at an ‘ordinary’ life. But there are others on here who will appreciate far more readily what you are going through. You must stick around and receive the love and comfort they can give you. Just hang in there. I know what you mean by ‘I’m losing me’ but I’m hoping someone on here will be able to give more positive help as to how to reduce that feeling and be positive. At the moment all I can do is give you a big welcome back. Love Kev
Hi Rosie, I didn’t read the original post but I agree with Kev, it’s very hard to come onto a forum… very different from talking to someone… and it’s very brave of you to come back and try to explain yourself. Hard to know what to say to you. Have you tried therapy? If only to allow yourself a space to express some of your (completely justified) anger? It might be worth a try and you’ve got nothing to lose. Your GP can refer you. You are very welcome to join out little gang on here. We really do support each other… at least it’s a place you can come to so you know you are not alone. Nobody, absolutely nobody, understands what it’s like living with this except other people who are living with it. So I hope you will come on here and join in. And no need to be embarrassed. We all know how frustrating it can be. Take care and try not to be hard on yourself. Thinking of you, Pat xx
Rosie as the others have said, you’re very welcome here. We aren’t one of the biggest support networks available but we do try very hard to respond to comments posted and give advice but more importantly we try to support each other. Your coming on and posting this has been so brave and I for one would like to apologise to you for my less than supportive reply to you letting off steam. We all do it and I should have recognised the signs instead of being abrupt. I’m very sorry.
But hey, it’s a new day!! If we can start again I’d be very happy. As Pat and Kev have said, it’s not an easy dx to cope with. Because we look so well people think we feel that way but with abilities being so variable even we don’t know what we’ll be able to manage from day to day. I’d definitely agree with Pat when she suggested counselling. It is available on the nhs and the MS society also have people you can talk to. Nobody will think you’re weak if you look for help, it’s a tough situation to be in. Not only have we got loads to cope with, we also get lesions in our brains that could make coping more difficult. I don’t know how you feel about medication to help as well, many of us, myself included take anti depressants. There’s no shame in admitting you can’t cope, very few people can without help.
You’re very young yet and I take my hat off to you having coped for so long with this dx. I’m 44, dx at 43 and felt angry at my youth taken away. Please speak to your gp or preferably your ms nurse, they can arrange appropriate counselling better. If that doesn’t sit well with you at least tell her how you’re feeling so she can discuss treatment with you. Whatever you decide, know that we’re very happy welcoming you to join us here. Sometimes if we’re not familiar with treatments we wait for someone who knows what they’re talking about so you don’t just end up with loads of waffle to wade through before someone answers your questions. Many of us don’t come on every day either, depends on how we feel and I know I don’t often read all the posts, just the ones I’m involved with when I’m feeling rough.
Take care and please let us know how you get on.
Hi Rosie, No need to apolagise! I am so pleased you came back though…I had wondered how you were . It is very unusual that we miss posts and once again I am sorry too but it was extremely brave of you to come back and explain. I think the advice Pat and Cath have given you is good. It is scary and people without our health problems do seem to struggle to understand. That is why this forum is SO great. I felt very alone with my MS until I came on here…its been a lifeline for me. I very often wonder where the old me has gone too. I know I am FAR less tolerant than I used to be…and bad tempered too! Try to rest as much as you can … I usually find most of these negative feelings come when I try to push myself …better to rest. My neurologist told me years go " you can’t fight MS it just fights you back Hope you will come back and air your worries with us when ever you feel the need, in the meantime take care of yourself. Nina x
Hi Rosie, you have nowt to apologise for, I have lost count of the times I have HAD to let off steam, lots of angry feelings come with all the other problems of ms.
I remember well how when I was first told of my DX how unbelievably lost I felt. I am ashamed to admit this, but back in the 80’s when this happened, I had never heard of ms, and to add insult to injury I had a neuro that had no bedside manner what so ever.
I was frightened, felt alone, lost, all types of emotions flooding in,but I had two small children and a hubby, all who needed me. Hindsight is wonderful and looking back now, what would have helped me, would have been to talk to someone about it, instead of bottling it all up, like I did.
If I can offer you once piece of advice that will help you, is to say to you, talk to someone medical about your feelings, let it all out, warts and all, your gp or ms nurse would be the people to ask to be referred.
This forum is really good, lots of lovely people, all who really do understand, and always willing to listen and offer support, so please come back and let us know how you are doing.
Hi Rosie, Great to hear from you again, I have been wondering how you were getting on. Sorry you have been having a bad time of it. I know what you mean by taking bits of you. I am certainly not the person I used to be. But at least I can console myself with the fact that I had a normal life up until recently. You are very young to have all this crap. If you ever need to rant just go ahead. Where about in Scotland are you? Take care, Mags xx
Thank you all so much for being so nice about it. I still feel a bit of a dick and would like to tell you that I’m actually really laid back, love a good laugh & I’m normally always making jokes out it all and life in general. I love to laugh and make people laugh. I don’t come across like that though but thank you all for being forgiving. I duno I think it’s the 18yrs and it being my bday has got my head a bit screwed. Since I’ve had it as long, I know the script well. I do take medication, i take dihydrocodeine, amytriptaline, thyroxine - for life now after getting an over active thyroid gland & also being lucky enough to get thyroid eye disease too. Yeah thanks for that one mr thyroid! :@ I looked like I was constantly on drugs with big scary eyes… Not a good look, trust me. I’ve used baclofen on and off over the years with varying degrees of success but I’m seeing my gp next wk to ask about tizanidine and will give that a go. My legs just now are so painful, you know that way they’re so tight they feel like they’ll snap? So anythings an improvement on that. I have been on anti depressants, when I was really down after I had to retire from my job with the nhs 4years ago now. I can’t remember what they were called but they really helped. I think amytriptaline’s a part antidepressant aswell isn’t it? but they help in letting me get a nights sleep without waking up with painful leg cramps. I normally suck it up and get on with it, I really do. My walking, what’s left of it’s really getting bad. My hands are turning into claws, my feet are turning on their sides. I go to physio and I see an OT about my hands. I dunno… I do the exercises, I keep going cos I’ve got too, I can’t lie down to it but there’s just times when I sit back and think… Shit! I’ve realised aswell that I’ve only ever really posted on here in a negative way, it’s been the times I’m upset and crying. I need to change that, I need to make the ms society forum a positive thing in my brain as opposed a negative. Okay I’ve slevered on enough, I’ll have you’s nodding off soon! Just trying to give you’s an introduction to me I suppose and again, I’m sorry for acting like a twat! Hope you’re all having a nice Saturday, whatever you’re doing. Peace out folks
[quote=Maggie56]Hi Rosie, Where about in Scotland are you? Hi Mags, I’m in sunny Dumfries… Wherebouts are you?
That is such a great post Rosie. You obviously have a talent for writing. Ever thought about doing blogs? Don… aka Hoppity… posts his blogs on here. They’re great. You should give it a go. You had me giggling several times about things that are hard to giggle about! Yes… come on here and think of it like coming to see friends. This board has been a lifesaver for me. Taught me that I’m not going through this alone and also made me realise that I can laugh at stuff that at first freaked me out. If you’ve gotta be in a gang this one’s worth being in! Have a nice weekend yourself and thanks for great post. Pat xx
Thanks Pat, that’s really nice of you to say. I’m glad I made you giggle, i do get my non ms friends laughing then apologising for laughing but they say it’s the way i describe my symptoms! Thanks again…
Hi Rosie, I’m from Aberdeen a bit North from you. I am the opposite to you, I have an underactive thyroid which has made me fat and am now trying to get it off. I like your description of the legs though. Mine too. Happy birthday by the way. Mine is tomorrow. I think I must be suffering from ms fog as I was telling everyone I was 57 until hubby pointed out that I will be 56. Doh!!! Hate It when he is right. Have a nice weekend. Mags xx
Happy birthday Rosie and Mags, hope you both have a lovely day.
Aw, Happy Birthday ladies, it’s mine next week too!
Rosie, I’m glad you came back, I think you’d have to be a saint to not let MS and the associated pile of complete rubbish (being polite there!) not make you angry at times. You should hear me ranting at some of the posts I read on those facebook groups.
Happy birthday Rosie and Mags, and to you Sonia for next week in case I lose track and forget to post.
Rosie I’m so glad you came back, we really are a decent bunch who are used to rants but love hearing about the positive day to day antics of everyone. It’s not an easy dx to live with but a positive attitude goes a long way to make it easier. That’s okay to say but we all know it’s not easy to maintain. You’re right, Amitriptyline does have anti depressant qualities but it’s more likely to be prescribed to settle the nervous system. They can practice an anti depressant alongside it if needed. I take it at night 50mg, but need my Citalopram too or I get really down and short tempered. My daughter’s very quick to point it out if she thinks I’ve not taken them.
As for the pain, that really makes life unbearable and can be controlled. Don’t let them fob you off like I did for so long. Keep on at them until you find a combination that keeps you comfortable. I’m not saying you’ll never have pain again, we all know that’s unreasonable but they can work with you to find a regime that suits you. It took about a year to get my pain under control, it felt like I’d scalded my legs. They were so painful but I think I’ve got a good quality of life now and have syrup I can have when needed to remain comfortable.
Take care of yourself.
Mags that never happens in this house last time I was right was in 1978 when I asked Heather to marry me never been right since but I defiantly got that right.
Rosie do you keep the bit of you that drop off? I do when I got all the bits I am going to build a new me, but a better version one that works. I knew you must have been in a bad way when I read your post and I am so So pleased your back coz now I can stick my tounge out and pull funny faces to cheer you up. This MS mularkey is a right bummer but if you don’t laugh you would cry and I have cried to many times. Hope the GP can help I have tried baclofen and tizanidine neither really worked for me now on Gabapentin that’s not working either but you will be different, I am a grumpy old man and nothing works for me, my glass is always half empty coz some rotter keeps drinking it. HAPPY BIRTHDAY TO YOU.
Lots of hugs. Don
That’s a bunch of flowers for you XXX
Happy birthday Mags and Sonia plus Rosie
There’s a cake each and the guitarist is playing HAPPY BIRTHDAYS TO YOU
HIPY PAPY BTHUTHDTH THUTHDA BTHUTHDY, MAGS & ROSIE! No, not, predictive text gone mad. It’s what wise old Wol wrote for Eeyore’s birthday in Winnie the Pooh (except the Mags and Rosie bit, he didn’t write that.) I’ve always laughed at that, hope you do too. Many happy returns! Kev xx
I like Eyore he is my favourite I loved doing all the voices when I read the stories to my kids I can do a good Eyore impression.
Happy birthday Rosie,Mags and Sonia! Nina x