Normally I wear my CF on my shoulder, it's part of me and it's that big elephant that I let sit there. If anybody asks why I use my crutch I go into an explanation, just because it's me and I always have done and to me openness is my key. Been that way since primary school when friends used to help break my creon into a yogurt for me.
This last couple of weeks though I've been feeling a bit out of place. I'm not like everyone else and it's taken 27 years for that even to really bother me. I usually just say I'm weird that works for me, I take a weird out look on life I think, no one gets me, but I'm fine with that.
I've recently made some new friends and been going round town with them, which I hadn't done for 7 years until recently!! But, I feel odd, I won't take my crutch no matter how much I'm suffering with balance before I leave the house, and I've not really thought about why but I've made a conscious decision that I don't want to take it with me, and if I fall then so be it (as long as it doesn't happen at the beginning of the night, then I can blame the cocktails :P)
On Friday I went to Alton towers (Awsome theme park in the UK), somewhere I haven't been in 10 years as I banned myself 8 years ago when I had my port put in and docs told me horror stories about breaking ports on rides). Well 2 weeks ago I was out round town and I was asked to go to alton towers by my new friends. Just because it was new people and my port is on its way to breaking soon anyway, I thought sod it I'm going!! So I did, but also felt uncomfortable taking my crutch again, which killed me on the hills as they don't have handrails either on the paths. I'm still aching like mad now but it was well worth it, mostly as I found out the rides went nowhere near my port and so there was no need for me to not join in this last 8 years.
I keep thinking of how many restrictions have been placed on me this last 7 years.....Don't go to theme parks, don't do any exercise including housework which thankfully got removed but I'm still careful as they still don't know what caused my muscle problems, and I still have balance problems, muscle and joint pain. Having to explain why I'm restricted from stuff like theme parks, I've just gotton used to it.
I think lifting these restrictions with friends who don't know me all that well is actually probably a good thing for me. But I still can't get over not wanting to appear disabled, which has never ever bothered me before. To the point I wouldn't even used disabled badge for alton towers, though did use it for parking as I know what I'm like with adrenaline, second it stops I go floppy, which I did which made me soooooo thankful we were parked near the exit!! But I felt weird using that too.
Obviously I've got the badge for a reason and I have my crutch for a reason and this should matter more than how I'm looking to my new friends, but that just isn't happening. Even having my creon in the toilets as I didn't wanna take them in front of people, though before we even met up on Friday, I was already being called medicine woman as I'd explained my bag was pretty much full of drugs so there was no room for me to take food :P
I'm mostly just writing this hear to get it off my chest. Obviously there's not much really I can do except grow a pair and get my to my normal "I don't care I have CF" attitude. Think it's because these friends are girly round town type people.....And I'm a geek by nature of everything else I do (playing computer games, painting warhammer, knitting, crocheting, fixing computers :P) I think that might be adding to my out of place feeling, which is odd as I'm really enjoying it whenever we go out anywhere and I enjoy their company. Maybe I'm just getting scared that I'm giving up a part of who I am, which is my openness? I dunno, just cant get my head round it :/
Thanks for reading and hope everyone is well x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff. Diagnosed with:
Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Oste
openia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.
Post Edited (Gemsi) : 5/19/2013 1:21:49 PM (GMT-6)