I oould not agree woth ya more fella! Whilst I will admit that I did nothing with my life before the MS I have now done more in the last 3-4 years than I have ever done in my life. I have been out Down Under to see me bro, I completed an Access to Health Studies course and I am currently doing 2 A levels at the local college.
I would not have even contemplated doing these as the MS (I refuse to refer to it as my MS!) gave me a kick up the ar*e that I needed. I also play wheelchair basketball as I am one of the lucky 10% of MS’ers that don’t suffer with the chronic lassitude fatigue. I am also able to do these things cos of Tysabri as this has left me on an even keel for the last 5 years. Even if I don’t onto the p/t OT degree course that I want to do, I will still be looking at finding voluntary work where i hope to tbe able to get the experience and training to become a Welfare Rights Officer as I have experience of helping MS’ers fill in the claim forms for ESA and DLA/PIP and, being honest, in my heart of hearts, this is what I would far rather be doing with my time. IF the training as a WRO leads to work then I certainly would not complain about it as it means that I would not on benefits and would be able to pay my own way again.
Well for your sake Gary I hope they never find a cure as you claim to love MS so much. I personally hate it and certainly don’t embrace it. I now can’t work doing a job which I loved, I’m skint and can’t even walk to the shops anymore. You do come over as incredibly self satisfied and smug, wonder what you were like before you were diagnosed (Edited for personal attack)
I didn’t realise I was being rude when I said I found some of Garry’s post helpful and for some reason I’m getting lots of Garry’s feedback directed at me apologies if I have offended people it was not my intention to offend. Jonesbear.
As I mentioned in an earlier response, I was wrong to use embrace and hadn’t thought it through when I initially composed the post. Inclusion was the term that I should have used.
If you, and Louiec77, found the post smug and self-congratulatory then fair enough, I accept that. You’ve read the post, formed your own opinions and I’m not going to try and change them; I know that some people will disagree with my attitude and approach, it’s your right to do so and I’m not going to criticise it. I am happy to debate and discuss the myriad of different ways of dealing with MS, and I’m happy to be challenged, because I know that my approach may not be the best one. It’s served me damn well over the past 13 years, but that doesn’t preclude the possibility that it’s wrong in parts.
As for those who don’t ‘love and embrace MS’, I regard them in exactly the same way as I would anyone else: with respect, kindness and consideration for their individual circumstances regardless of whether or not they have a disability. What good comes from doing otherwise? I’m certainly not going to judge someone just because they have a particular point of view, but I’ll do my best to understand where that person is coming from. If I don’t understand someone or something, or if I disagree with them, then I’ll ask them to explain why they think the way they do so I can build a more informed opinion for myself. If we just attacked everyone who held a different opinion then the world would be a terrible place: “without good manners, human society would be intolerable and impossible” (George Bernard Shaw).
And it’s a shame that I missed the personal attack as I love a good insult, but before I was diagnosed I had a very similar approach to life. And I had hair, but I don’t miss that at all :o)
@Jonesbear: I apologise if you’re getting feedback that was meant for me, but I certainly didn’t think you were being rude and found your comment really encouraging. Thank you…
I guess it depends where you are coming from, at what stage you are at and how severe your MS is. I’m in limbo but my best friend’s sister has MS. She is super intelligent, Oxbridge educated with a PhD. Before PPMS she had a high profile and highly paid career which she loved. Within 5 years she has gone from a physically fit woman with an enviable lifestyle travelling the world to doubly incontinent, unable to transfer or even fed herself.
It’s difficult to put any positive spin on her situation.
You make a good point anon. To be fair I’d already had to give up my career due to Psoriatic arthritis before my MS diagnosis.
I can also appreciate if diagnosed at a young age, then it must be devastating when you think you have your career in front of you to enjoy, its all taken away.
I can see its difficult to put a possitive spin on your friends situation x
I too have a positive attitude, which sometimes takes energy to achieve! I wanted to agree with you on one aspect of your post - that of the attitude of people who ‘write you off’ and assume that you can no longer do anything, will retire to a corner, lick your wounds and lose the ability to answer questions yourself! I find it ntensely annoying. I also think those people transfer on to us how they think they would feel in our situation. I hope that makes sense.
It takes effort to continue through life with all its hurdles, and to have to use some of that energy disabusing people (as described in your original post) of their own negative attitude towards MSers takes some of that precious energy. I sometimes say to them ‘what’s the alternative?’ - to become despairing, to give up?? No, I don’t think most people would want to do that.
I’m glad you are still able to lead a full (and appreciated) life, and hope your relative good health stays with you
i’m glad for anyone who can remain positive, but i recently hit ‘a decades worth of pain’ anniversary. not a lot of fun in that. i hope you keep positive though.
I have ms and so does my daughter who’s 15 and rrms. Mine is benign and I wish I could swap places with her because it’s heartbreaking to watch your children suffer. Like any dad I just want to look after my little girl.
When I read your post Garry I was so angry that I wanted to thump you for saying that ms was the best thing that had happened to you. Then my daughter read it and broke down in tears and asked me why I couldn’t let her live her life like you do and why I was always so negative about the future.
We had a really long chat with lots of tears and I learned so much that she’d been keeping from me, like what she dreamed of doing and why she hated having ms not because of what it was doing to her but because it had changed who I was. I’ve been much more protective since she her dx last year and, rightly or wrongly, feel guilty as I believe she inherited it from me.
She told me how I’d made her feel trapped and unhappy at home and that there was no hope for her now she had ms. She has balance problems and when she told me she was being picked on because of it I felt sick. I’d told her to keep quiet about her ms so she wouldn’t be bullied for being different! You can’t even imagine how that made me feel.
Her grades have been down at school and I put it down to the ms, but she said it was because of how things had changed. We talked for hours about all the things we used to do together that we don’t do anymore and why we didn’t do them and how we could start to fix it. It was heartbreaking because I had no idea what I was doing to her when all she wanted to do was be who she used to be but with a couple of quirks. It’s not going to be easy but I need to start somewhere.
This morning my daughter was the happiest she’s been for months. I’ve just booked scuba lessons for us because she wants to learn to dive and me and my wife are meeting her school counsellor on Monday. A couple of her teachers and her best friends know about the ms but she plans on telling everyone who asks what’s wrong with her. She printed your post and is carrying it with her so you have a fan! I saw a spark of the feisty girl I used to know and I’m so proud of her.
I’ve read your post and all your replies again and again and I’m sorry I wanted to hurt you. You have an amazing take on life and your attitude is life changing. Reading between the lines I think you’ve lost a lot since your dx and maybe that doesn’t come through, but good luck and keep on being you. Don’t change for anyone.
Thank you from me and my daughter for being different.
Hi Garry :-)) What a lovely post. I quite agree with you about MS being good for you. I was a Chef for 25 years, loved it, was brilliant at it but MS put a stop to it because I was becoming a danger to myself and others. But all the while, in the back of my mind, I wanted to go back to college to study Counselling and Psycology but due to the hours of my job and having a family I just couldn’t find the time. So I gave up my job and enrolled at college and started studying. I have to thank my diagnosis for that, because if I didn’t have MS, my college dream would have faded away. But here I am today, happier than I was before, loving what I am doing, kicking myself a bit that I didn’t have the courage to do it sooner, but otherwise happy in the knowledge that by the time I am 46 (3 years time) I will be fully qualified. Xxx
