Hi, I'm m3, AS, osteoporosis and liver cirrhosis

M3dcol

Hi all, I've been diagnosed with the above over the last 18 months and at 41, previously healthy and very active this has been the all too often used 'bombshell'. Struggling a bit to get used to my limitations and life in general as many adaptations are having to be made and as helpful people keep pointing out "your not really disabled though" when they see my badge in a car park or me attempting contortionism to free my body from all too regular lock ups and stiffness. I'm new to the 'group' thing, typical man who can handle it on his own syndrome, so have no idea why I'm doing this nor what to expect from baring my soul, just, I suppose, an outlet with people in similar situations, their are many in worse positions 

Tori_Scope

Welcome to the community @M3dcol It's great to have you on board! Don't worry about not quite knowing what you're looking for, as our members chat about a wide range of topics and you're welcome to get involved in whatever capacity you're comfortable with, entirely at your own pace.

Thank you for being so open and honest in your first post here. I'm sorry to hear that you've experienced some people saying that you're 'not really disabled'. You're certainly not alone in having to face these kinds of comments, but I appreciate that doesn't make it any less hurtful or invalidating. 

Are the adaptations helping, despite taking some getting used to? 

You're definitely welcome to use the community as an outlet, as well as hopefully for chatting with others who've been through similar things. You can view all of the categories of discussion we host here on the categories page, but you might be particularly interested in the following categories:

• Coffee lounge: for casual conversation and games
• Chronic pain and pain management
• Rare, invisible, and undiagnosed conditions
• Mental health and wellbeing

Do you have a good support network of family or friends?

Ross_Alumni

Hello @M3dcol

Welcome to the community, it's nice to see you join us. 

As mentioned above, feel free to use this as a safe space to talk about how you feel and how your conditions impact you, and you won't be judged at all. This is a very supportive and welcoming place and I'm sure you'll find people with shared experiences. 

If you have any questions, feel free to ask. 

Do you receive support to manage your condition?

janer1967

Hi and welcome to the community from me too 

chiarieds

Just adding my welcome to this friendly & supportive community @M3dcol - sorry for all you're going through, but pleased you found this group. There's usually someone around to chat to, so please use this forum at any time. 

Reg

Hello @M3dcol

Another warm welcome to the community.

I know what you mean when you talk of contortions, especially getting out of the car.

What car do you drive? I have recently changed my car so it is higher so I do not have to do the equivalent of a thirty point turn to extract myself from the car whilst the onlookers are checking to see that I really do have a badge . Sometimes I feel like a clap is required as I have achieved extraction.

Anyway, hope you find the forum helpful and supportive 

M3dcol

Hi @Reg, I drive a micra at the moment, which I love (sport version and loads of personality) but not the most comfortable anymore. A 20 minute journey can make getting out and standing a little awkward, I know what you mean about a clap ?.