Thought I would reply as you’ve been so kind to me - I hope you are continuing to feel a little calmer about things (but please post if not). I’m not sure how useful I can be (from my posts, you may have ganged that I have my own concerns at the moment). However, also from my posts, I did say that I am a student nurse. Because of this, I do have access to quite a few up to date research articles. In regards to life expectancy, from what I remember reading, yes in it’s worst form (bad PPMS), then it can shave off UP TO 15 years off a persons life (N.B., this is not the MS itself, but as others have said, complications of it - usually a persons inability to fight off infections any longer). The average though is about 5-10 years (not a lot when you take this against people having life expenctencies of 100+ now at birth, women in particular). You then also have to set that against the fact that those figures will take into account those who do die prematurely (15 years prior) from various complitcations. Thus, all in all, life expectancy for most people is probably about the same, or not far off.
In terms of sites to read - I agree with what other people have said. I’ve come across far too many trashy sites on the topic on the internet. If you’re going to go looking for info on it, stick to the main sites, or look for .edu (educational - usually university / hospital) sites. Avoid .com, .co.uk and .org sites (unless they come higher recommended e.g. this site) - they are usually companies with their own agendas (and you need to work out what that agenda is - worthwhile charity site, or scare mungering / money making before you can take anything on the site seriously).
Apart from this, just try and take it easy and be strong. If there’s anything that I’m learning, it’s that stress is not helpful - not for me, nor for my family, and that life is for enjoying.
I think its totally natural to worry and non of us can give you answers as everyone has different experiences.Just to reassure on the family front I’ve had two beautiful babies since being diagnosed ,I got pregnant the first month of trying with both of them and had event free pregnancies. The first was born completely without intervention I did need a c section with the second but that was only due to position and we were home three days later.
I appreciate that you are seroiusly freaked out and worried about the whole situation you and your daughter are in. I myself was Dx in Oct 2012 and have had a hard time coming to terms with it (I’m 32).
Please stay away from reading horror stories on the internet it won’t help you or Rachael. I have recently bought a copy of “Multiple Sclerosis for Dummies” (you know the big yellow books they produce on different subjects) It is written by the experts and is a very easy to use book and covers everything to do with MS and how to tackle it. It has certainly stopped me googling everything and scaring myself silly. Maybe it’s worth a try for you?
Thanks Becky, will look for it on Amazon tonight. I have just finished Awkward Bitch, my life with M.S. which was funny and quite good but not very informative, more like chick literature. Rachael and I joined a gym today and had a great hour there. She is really looking forward to going back. She was very tired after it but at least she could point to the gym for her tiredness rather than being very tired and doing nothing to make her so tired. Definately feeling a bit better this week, and that rubs off on Rachael. She is old enough to be able to guage my mood and if I am worried and upset it worries and upsets her so have to try and stay strong and positive for her. Linda x
The best advice I was given by both my GP, me neuro and my MS nurse is to stay off the internet unless it’s the MS websites. And I have done so and I think it’s been a saviour. I passed on the same advice to my family but not all of them adhered to it and now my sisters are paranoid every time their arm falls asleep that they have MS lol.
The thing is that I actually think it’s easier for those who have it because we know how we feel whereas those close to us can only imagine.
My great-aunt (she’s only in her 60s) has cancer. Really horrible cancer which has needed major surgery a few times and various bouts of horrid treatment. And yet, she asks my mum how I am, she prays for me and she frets over how I am doing! I feel like such a fraud because all I have are tingles and blurred vision. Which is nothing in comparison with her suffering.
I don’t accept a wheelchair, trouble swallowing and all those other symptoms as inevitable. Not at all. The leaps and bounds being made in terms of treatment and DMDs is amazing and as the treatments are so new. There is no way of knowing long term the benefits or differences that being on them from diagnosis (long term).
Of course you are going to worry about your daughter but you also need to give her the best outlook as possible. Positivity is essential because with something like MS it can come and go. No point getting a relapse and rolling over and accepting that is it, it’s a permanant problem. You’ve got to go in to this being as optimistic and positive as you all can be. Being realistic is important too. No point hiding scared from the reality either. It’s MS and it’s crap that she has it so young and being angry and scared is totally normal.
But for now, for as long as she is “healthy” make the absolute most of it. Let her just get on with her life and see what way it goes. None of us knows what life has in store. And while MS might seem like the worst thing ever, it really isn’t. I can think of a number of other things that I’d rather not have.
Pre-m.s. you took it for granted that your daughter would leave school study or get a job, leave home, settle down etc. Now, because of the m.s. there is uncertainty about the future and that uncertainty isn’t going to change. It’s very hard to come to grips with that. M.S. is going to impact in a negative on your daughter and on her family. To what extent you don’t know. Try to focus on the short term and not on the long term. And keep in mind that there is more going on in the field of research/treatment than ever before.
My son was doing work experience at a library a month after I was officially diagnosed. We were both still struggling to come to terms with it and he ordered in a copy of the ‘Dummies’ book for us to flick through together. It is easy to read and was ideal for a teenager too as the child friendly MS books were too young for him. It helped put things into perspective for both of us. I had forgotten about it until you reminded me. Thanks Becky
I can recommend it too. Definitely worth a read, Linda, for you and your family.
Hi guys, thanks for replies. Ordered MS for dummies last night from Amazon so that will be in my sweaty, curious, worried hands soon. Am trying to practice what I preach to Rachael about this to shall pass, it’s just a blip and you will feel better. Linda x
I’m gonna get a copy too, I think my husband might need it!
Glad to hear you’re feeling a bit more positive. I find it comforting to read your posts, a view from the other side as it were… I kick myself sometimes for talking to my Mum when I’m low or having a bad day as I don’t want her to think things are awful when I’ve been pretty together for the other 6 days (apart from the odd ten minutes here and there). I guess you and Rachel’s moods will rub off on each other.
I’m glad you’ve got a copy on it’s way to you and I hope you find it useful, there is a section in the book you might find helpful about being a parent of a child/teenager who has been diagnosed (starting page 241).
Well done to the both of you for going to the gym!!! I really happy you are feeling better-keep it up!!
Take care
BeckyX
P.S Sonia I think everyone’s other half should be handed a copy of this book when we get diagnosed!
Sonia, don’t ever feel you are burdoning your mum, if your mum is like most mums she would want to know. She probaby imagines worse than what is actually going on so you telling her how things are although are probably scarey and upsetting may well put her mind at ease or as much ease as we mums can get. I know I would take this off Rachael in a heart beat and would suffer worse for her, your mum is probably the same. Keep her in the loop, don’t shut her out, that would make her feel worse. I would feel like a failure if I thought Rachael could not talk to me and tell me honestly how she was feeling and what was going on with her. Becky, will be heading straight to page 241 to try and get my head round this. The better I feel about this the better I can advise and care for Rachael and if my mood lifts it can only help her, she is still young enough to be affected and take her cues from me about how to react to what is going on in her life. Linda x
