Isolation?!

It's just occured to me that I might seem a bit of a strange one if people really got to know me in the ms blogosphere, since I don't belong to any local chapters, or groups, whatever you'd call them, and I only know one other person with MS in the "real world".

It might look like I'm living in denial, I'm not I can assure you, but I don't tend to think about it alot, because I figure it's just better to get on with things, as there are a lot more people worse off medically speaking than me.

I'm not that bad, sure I feel tired alot, I get spasms and my legs feel like lead alot of the time, but apart from wierd sensory symptoms I'm not actually that bad and have a lot to be thankful for. When I was first diagnosed, just over five years ago, I went into a panic, and looked at groups locally, but (and correct me if I'm wrong people please!) my local MS group seemed to be very poorly organised, and full of older people who had had the condition for years and years, and were quite disabled. I felt kind of out of place, but was confused as when I attended a newly diagnosed session organised by my local MS nurses, there were loads of people around my age there. (I was 29 at the time)

I went to look at the website of my local group last week just out of curiosity, and the website is exactly the same, and the same dates on it even! It just looks old and dated and out of touch to me, and frankly puts me off. I do feel a bit isolated at times though...

Would anyone know of a group that meets in Liverpool UK, young adults, twenty or thirtysomethings? I've not found anything, though I guess I could ask my nurses at my next appointment.

One of my biggest fears was realised the first phone call I had with one of the main organisers of the group, who I'm sure was in his sixties (no offense meant, I just mean in comparison to me) and was very very negative. I guess once the MS really kicks in, and you have to endure increasing levels of disability, it must be very difficult to remain positive and to lighten up, but as I've not experienced that yet, it's hard for me to understand. Not that I'm saying that we shouldn't share our hurts and struggles, just not all the time constantly!

I was put off my local group, because when I spoke to the gentleman, he obviously asked me when I was diagnosed, and what symptoms had brought about the diagnosis. As soon as I had told him, he basically replied with "well it'll get much worse than that don't you worry", and also "you work full time? Well you'll have to give that up eventually... I did, you know" which I realise is true, but wasn't exactly the best thing to tell someone when they're newly diagnosed!

Maybe it's that experience that put me off, maybe it's just because I can be quite introspective at times. *sigh* I don't know.

I've been thinking lately that I want to meet with people with a similar experience of life, but I don't want to meet just to moan about my symptoms, or discuss ailments or treatments. Heck, I can do that when I'm older with practically anybody, and probably will!!

Are there any positive, fun groups out there with normal people in them?!

(gee, I know this post sounds harsh, I was just being honest!)