Hello,
My name is Ashley. I am a 31 year old male - I have had MS for around 15 years, needless to say - I've been through a bit with it.
I was a member of these boards many, many years ago. You could say I'm a seasoned veteran - unfortunately I had an argument with Sparky (the administrator at the time - I do apologize btw, for what I wrote to you in that nasty e-mail)
A lot of you who may be reading this, are probably quite new to the disease, and afraid - I can't stress this enough: Live life while you can, don't let a diagnosis be a jail sentence - no one knows what the outcome will be.
I can honestly say, I wasted a good 10 years of my life, using MS as an excuse to not do things - I didn't become completely recluse, but it did destroy a lot of my confidence. Let this be a lesson - please, please do what you can, while you can.
When I was officially diagnosed at 21 (the neurologist said I've had it for probably 5-6 years prior) - I took the unfortunate route of thinking "what's the point". I went through the whole lot - depression, anger, anxiety - it's all quite normal, who wouldn't be angry at the world when you have everything going for you and it feels like it's just been stripped in one fell swoop.
The hardest thing I found about the whole experience, was having people relate to how you're feeling. I could 100% say, my parents still don't get it - and unfortunately I am in the situation where I live with them. It's sometimes good, sometimes bad.
I managed to keep in full time employment until just recently - then moving between contract IT work, a website selling online retail goods, and sports photography for a large worldwide photo agency - the days I'm working are slowly getting less, and the need to rest, and recuperate are becoming more. I am more interested in my photography now - being outdoors is good.
The route of taking medication can also be a tricky pill to swallow - excuse the pun. I was recently offered a place in a trial.. read the fine print, it had a 2-5% mortality rate. the CRABs (and more) had issues, and a large amount of patients have trouble on the medication - don't feel bad if it doesn't work for you, but if you can tolerate it, it's most likely a good thing for your long term outcome.
I remember clearly, 10 years ago we were hoping for a cure by now, but it's safe to say it's still a fair way off - for those of you who may have been approximately 5 years old when I was diagnosed - there's been a lot of progress made in the treatment of this disease, and with the amount of people being diagnosed growing exponentially by the day, things will speed up - hopefully one day a cure will be found.
I wish everyone the best of luck in their journey with MS. It's something that will be by your side forever, so please come to peace with it.
Don't be angry. Don't take it out on others, I lost a lot of friends and burnt a lot of bridges due to my anger, it's something you'll one day end up regretting. Some people may feel uncomfortable, and you may lose some friends, or acquaintances, don't let it upset you.
Take time for yourself, and look after your health - it's the most important job you'll have from now on. Don't ignore the obvious signs, slow down when you have to. Things will naturally work themselves out.
TLDR; Good luck with your Journey.
Peace, love, and thank god it's legalized in some states now..
Ash
My name is Ashley. I am a 31 year old male - I have had MS for around 15 years, needless to say - I've been through a bit with it.
I was a member of these boards many, many years ago. You could say I'm a seasoned veteran - unfortunately I had an argument with Sparky (the administrator at the time - I do apologize btw, for what I wrote to you in that nasty e-mail)
A lot of you who may be reading this, are probably quite new to the disease, and afraid - I can't stress this enough: Live life while you can, don't let a diagnosis be a jail sentence - no one knows what the outcome will be.
I can honestly say, I wasted a good 10 years of my life, using MS as an excuse to not do things - I didn't become completely recluse, but it did destroy a lot of my confidence. Let this be a lesson - please, please do what you can, while you can.
When I was officially diagnosed at 21 (the neurologist said I've had it for probably 5-6 years prior) - I took the unfortunate route of thinking "what's the point". I went through the whole lot - depression, anger, anxiety - it's all quite normal, who wouldn't be angry at the world when you have everything going for you and it feels like it's just been stripped in one fell swoop.
The hardest thing I found about the whole experience, was having people relate to how you're feeling. I could 100% say, my parents still don't get it - and unfortunately I am in the situation where I live with them. It's sometimes good, sometimes bad.
I managed to keep in full time employment until just recently - then moving between contract IT work, a website selling online retail goods, and sports photography for a large worldwide photo agency - the days I'm working are slowly getting less, and the need to rest, and recuperate are becoming more. I am more interested in my photography now - being outdoors is good.
The route of taking medication can also be a tricky pill to swallow - excuse the pun. I was recently offered a place in a trial.. read the fine print, it had a 2-5% mortality rate. the CRABs (and more) had issues, and a large amount of patients have trouble on the medication - don't feel bad if it doesn't work for you, but if you can tolerate it, it's most likely a good thing for your long term outcome.
I remember clearly, 10 years ago we were hoping for a cure by now, but it's safe to say it's still a fair way off - for those of you who may have been approximately 5 years old when I was diagnosed - there's been a lot of progress made in the treatment of this disease, and with the amount of people being diagnosed growing exponentially by the day, things will speed up - hopefully one day a cure will be found.
I wish everyone the best of luck in their journey with MS. It's something that will be by your side forever, so please come to peace with it.
Don't be angry. Don't take it out on others, I lost a lot of friends and burnt a lot of bridges due to my anger, it's something you'll one day end up regretting. Some people may feel uncomfortable, and you may lose some friends, or acquaintances, don't let it upset you.
Take time for yourself, and look after your health - it's the most important job you'll have from now on. Don't ignore the obvious signs, slow down when you have to. Things will naturally work themselves out.
TLDR; Good luck with your Journey.
Peace, love, and thank god it's legalized in some states now..
Ash