Normalness....

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Gemsi
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Date Joined Feb 2007
Total Posts : 1050
   Posted 5/19/2013 1:18 PM (GMT -6)   
Heya,
 
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 Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Post Edited (Gemsi) : 5/19/2013 1:21:49 PM (GMT-6)


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/19/2013 1:27 PM (GMT -6)   
Oh btw, round town for me means going out like clubbing where we go from club to club dancing. I'm not sure if you call it that in America. I stopped going when I went onto crutches as it was too packed and I was getting too tempted to hit people with my stick when they said bad stuff to me. It's not as busy as it used to be though, I go on a Tuesday night when town is a LOT quieter than the weekend. Thought I'd clarify that! 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 Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10404
   Posted 5/20/2013 11:21 AM (GMT -6)   
Nice to "see" you Gem.

Everyone talks about the stages of grief, but I never really "got" it until a mother of a child with disabilities said to me: "When you have a child with special needs, you don't just go in the "in" door and come out the "end" door. It's more like a maze; you think you're doing great and then suddenly you turn to corner and you're once again in the "denial" dead end of that maze."

I think those of us who have chronic disabling conditions go through the same thing. Give most of us the smallest improvement in our daily abilities and we immediately want to think we're much better.

And it does sound to me as if you're doing better now, am I right? I think it's only normal to want to experience the same sort of life others have, and to try that when we think we can do it.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. In remission since 2006 with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/20/2013 1:11 PM (GMT -6)   
Hi Judy,

Nice to "see" you too.

I don't really think its so much feeling better. They've recently added polyarthralgia to the end of my diagnosis list and not explained it to me at all, feels like another thing wrong that I'm just gonna have to live with without treatment for. Another friend with cf died in march and my friend who's maybe going on the transplant list but they're not sure he has enough veins to be able to do a lung transplant and so he's having to wait while they keep doing tests and he's got currently one of worst chest infections hes ever had. I think in a way this might be going through my head when deciding not to take my crutch places. Pushing myself the way I am is causing pain, but I'm just thinking about how short life with cf is. Plus I'm wanting to be the fun person everyone loves and how can I be that of all I'm doing is scaring people by looking disabled?

I do want to be normal for a change. I'm usually straight in there with wanting treatment when I feel rubbish, but even that I'm avoiding. Its probably took me longer to be stubborn about not waiting treatment than it has my other friends with cf. I've seen so many peoples health just drop though so maybe I should start living my life instead of always being scared of it?

See my counselor on Wednesday, maybe I need to talk about some of this stuff to get my head round it fully?

Hope you're well Judy

Gem x
Hey, I'm Gem with CF, age 27 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 Osteopenia, Erythema Nodosum, Myopathy, Polyarthralgia.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10404
   Posted 5/21/2013 4:24 AM (GMT -6)   
Oh, sweetie, I'm so sorry. I can only imagine it must be very unsettling to see friends die from the same disease you have. That could certainly put anyone into denial, I think.
 
 (((Hugs))) to you.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. In remission since 2006 with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

DeirdreKay
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/31/2013 7:50 PM (GMT -6)   
Hi there :) I have been struggling with this idea of normalcy, too. Lately I am finding it just wonderful to have friends who don't know all the details of my CF. My cough is the only obvious reminder that something is different about me. I don't want CF to dictate any more of my life than it already has, and though I am open to informing people when the mood strikes, I have gotten tired of being treated differently because I'm sick. Very recently I decided to keep disclosure to a minimum when I feel it might result in "discrimination", of sorts. Mostly, I can't stand ignorant comments or pity. I don't think I owe anyone an explanation for my constant coughing and pill popping. And I don't need anyone behaving as though I'm a hopeless cause. I've come a long way and I work darn hard. That pride and self-worth won't be taken from me by anyone, and I don't really think there's any damage to my idea of normalcy when I take meds in public and hack up my lungs.

Your outings sound exhilarating :) I am in the phase of going out again and living life to the fullest (after years of working to get a healthy state). It's not worth dedicating so much time to worry and distress. We all deserve to go out and laugh and blend in with the other weirdos from time to time.

I dunno about forgoing the cane, though. You can still stand tall and proud with it. But, anyway, that's just my opinion :) Keep having fun!
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