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I have posted a couple of times but never introduced myself properly! I am Zoe, just turned 35yrs and I was dx in July and have been confused ever since. I felt bad 2yrs ago and my B12 levels were checked, they were low so I was dx pernicious Anaemia. I managed okay and bad feelings went as long as I had B12 injection every 10 days or so and found a nice go who helped and taught me to self inject it so I was not back and forth. I have been checked for lots as the ‘normal’ for B12 is every 12 weeks and this year I have had a head MRI, cervical spine MRI and lumbar puncture which all shew MS. My consultant was nice and even shew me the images from the MRI’s so I have accepted this dx now. Luckily my husband is doing all he can for me as my mother is just telling me how dire it is and that she asked her gp what my life expectancy is now and how long before I will get a wheelchair - she never asked if I am okay or said not to worry about my dx :frowning: I have felt :cry: for the last couple of weeks now, feel I am doing my best for my husband and daughters but never get it right or forget! My memory is terrible. I can go from one room tpo another and foget why I am there! Will prob have more to day but am tired typing this and have forgot anything else to add…so for now Hello :wink:

[I have felt :cry: for the last couple of weeks now, feel I am doing my best for my husband and daughters but never get it right or forget! My memory is terrible. I can go from one room tpo another and foget why I am there! Hi Zoe, Sorry things are so down at the moment that feeling in the above quote never get it right or forget, is actually a normal feeling for a parent even without a condidtion to deal with, so please first things first stop putting yourself down. Remind yourself that you are a good mother a great wife and even when living with limits you are an amazing humanbeing, end of. Illness makes you think in a downward manner and thats all it is illness making you feel poo. Difficult to live with but possible to get through. Be gentle with yourself you are worth it. Hello to you to Take care Deb x

Hi Zoe and welcome :slight_smile: Some mothers are simply not very good at admitting that their children have something wrong with them and either go the complete denial route or the “OMG, she’s going to DIE!!!” route, thereby forgetting that, er, actually their child could do with some hugs and understanding… It sounds like yours is doing the overreacting bit. Not terribly helpful! It does sound like she really doesn’t know very much about MS so that won’t be helping. Only a small proportion of MSers end up in wheelchairs and our life expectancy is actually only a wee bit less than normal. I was at a MSS branch meeting the other day and there was a group of 4 old ladies there who had definitely lived very much longer than many non-MSers! Getting a diagnosis is really hard, so it’s no wonder you’re feeling confused. You’ll probably go through a whole host of emotions over the coming months. That’s perfectly normal! So give yourself a break. Be kind to yourself. Forgive yourself the memory lapses. Focus on the important things. The rest doesn’t matter. Talk to your husband. Let him talk to you. He’ll be confused and scared too. Working through this together is definitely better than both toughing it out alone and bottling everything up. When you’re ready, the MSS and the MS Trust do some really good booklets all about MS - they are free and can be downloaded or ordered. The MS Trust one for kids is really brilliant too. Karen x

Thanks Deb, Karen xx You have hit the nail on the head Karen, my mother is the 'OMG she’s going to die! She pointed out to me when I told her I am fine that MS is progressive and if MSers did not have mobility problems how come there are so much disability equipment for people with MS. My brother had gone the other way - I hear from him rarely usually but he has told me about a diet and a hemp oil thing that I should try as its not the end of the world having MS because these can cure it! :roll: I have looked and there is a regular MSS meeting not far from me and initially my husband said he would take me but on parking the car park was full and walking to the door the hall was full with everyone sitting in a circle (got there at start time I found!) I am quite shy, especially in large groups, my husband said he will back me with whatever I decide so I chickened out and we left :oops: I have read a fair bit from MSS and got the booklets for kids so when it feels right to tell my daughters I have the booklet which is great! I have not got any more though as I know my mother will not even look at them because ‘she knows best’

Thanks Marie, I have thought hmm to my age as I keep getting told I am okay with MS because I am quite young! Zoe x

norfolkbabe wrote:

She pointed out to me when I told her I am fine that MS is progressive and if MSers did not have mobility problems how come there are so much disability equipment for people with MS. My brother had gone the other way - I hear from him rarely usually but he has told me about a diet and a hemp oil thing that I should try as its not the end of the world having MS because these can cure it! :roll:

LMAO at the hemp oil and diet cure - if only!!! But hey, at least he tried :slight_smile: Absolutely true that a lot of MSers have mobility problems, but all those great mobility aids mean that we can still do loads. And you’ll still almost certainly outlast your mum :slight_smile: Why not phone ahead to the someone who runs the meeting and get them to meet you at the door early so they can sneak you in and introduce you to one or two friendly people - before the crowd arrives? Karen x

Hello Zoe! Pleased to meet you; I’m Clare. I find that it is best to just :roll: when family talk as they either grab hold of the poopy end of the stick (like your mom) or the googlelinksupercure end! They really don’t seem to get it easily. What I did was just leave leaflets about for them to ‘find’ and learn all by themselves, then they can be so proud of informing you of the facts :wink: For memory - try useing a little notebook; you may feel daft but when you find yourself upstairs and wonder why but if you wrote down ‘close window’ before you set off then you’ve got it in your pocket! (Of course that only works when you remember to use notebook and read it!) This site is very good, I find there are a lot of wise heads around and the odd goofus (ahem!) :sunglasses: Clarexxx

Hi Zoe, I am 31 and I was diagnosed in the summer there as well, also have a neurotic family (who also won’t read the facts) and children of my own so I kind of know what you are going through. I still can’t quite believe it all either! The others have given you good advice, other people tend to handle this worse than we do. I have to say I was in bits over the summer and taking it very easy etc, but now my life is pretty much “back to normal” apart from I can’t walk too far and I get tired easily so I pace myself and have learned to say ‘no’ when I need to. Take it easy xx

rizzo27 wrote:

Why not phone ahead to the someone who runs the meeting and get them to meet you at the door early so they can sneak you in and introduce you to one or two friendly people - before the crowd arrives? Karen x[/a]

Did think that Karen but am chicken to phone and meet a stranger :oops:Cbear wrote:

Hello Zoe! Pleased to meet you; I’m Clare. I find that it is best to just :roll: when family talk as they either grab hold of the poopy end of the stick (like your mom) or the googlelinksupercure end! They really don’t seem to get it easily. What I did was just leave leaflets about for them to ‘find’ and learn all by themselves, then they can be so proud of informing you of the facts :wink: For memory - try useing a little notebook; you may feel daft but when you find yourself upstairs and wonder why but if you wrote down ‘close window’ before you set off then you’ve got it in your pocket! (Of course that only works when you remember to use notebook and read it!) This site is very good, I find there are a lot of wise heads around and the odd goofus (ahem!) :sunglasses: Clarexxx

Hi Claire, pleased to meet you too. I thought about leafets but my parents will leave them laying around and my kids there often and I want them to hear from me when the time is right…also my nan (mothers mum) lives there too and my mum will not tell her as worrying that the shock may kill her! My mum did ask me not to tell my dad as it will worry him to illness but as they are still together its not fair she knows and he does not so when he popped over once I told him. He seemed to accept it as long as I am feeling okay but mum asked how he took the news. I told her I shew him the papers from my neuro explaining and he read everything and left seeming okay as long as I was…she replied ‘oh gosh, he does not understand’ I have a note book I scribble things in to remind myself but tend to forget the notebook :oops: :lol:amylou wrote:

Hi Zoe, I am 31 and I was diagnosed in the summer there as well, also have a neurotic family (who also won’t read the facts) and children of my own so I kind of know what you are going through. I still can’t quite believe it all either! The others have given you good advice, other people tend to handle this worse than we do. I have to say I was in bits over the summer and taking it very easy etc, but now my life is pretty much “back to normal” apart from I can’t walk too far and I get tired easily so I pace myself and have learned to say ‘no’ when I need to. Take it easy xx

Hi Amylou, nice to meet you. I am always being told I am okay and its strange I have MS but I will be okay with MS as I am so young! Maybe neurotic family is a ‘normal’ thing when you have MS Glad to hear you are pretty ‘back to normal’ except not walking too far, well done for learning to say ‘no’ Zoe x

Hi Zoe welcome Tracy x :slight_smile:

You never know Zoe - there might be someone from on here who goes to the same meeting. Why not stick a post on Everyday Living asking? Worst case scenario is that there isn’t, so no harm done. Kx

morning Tracy, thanks for the welcome. x Good idea Karen, will have to try that, Norfolk is so spread out even if they are not quite so local they may not be too far :slight_smile:

Hello to all, My name is Jennifer, 45 years, diagnosed six months ago with relapsing remitting. I have been taking cbd (hemp) oil for a month for longer energy. I’m not sure if it’s a placebo, but I think it helps. I was hoping to hear from the community about any experiences you may have had with this. Thank you.

hi jen from vancouver island i started using CBD oil a few weeks ago. i was vaping it. it ran out and i ordered some more but this one is stronger and is not to be vaped, just 3 drops under the tongue. today i’ve used it twice and about to do it again. got a horrible painful back which i don’t think is ms. nice to meet you carole x

Hey

I can relate as I was just diagnosed in June. All I hear is ‘oh I knew someone who had MS and went downhill fast blah blah’ which is the LAST thing I wanted to hear.

I am 31 with two kids and since my diagnosis, have tried my best to remain positive and not look too far into the future otherwise I will make myself ill.

My mum said after my diagnosis that I was handling it better than her. I suppose it must be hard to see your child be diagnosed with a life long condition.

But try to remain positive, it will get you further than you think and there is so much more drugs available these days than there ever has been - even 5 years ago!

We can only try but live in hope.

Here if you ever need a chat x