Okay so today was a day like any other. Get up after sleeping 12 hours and stay in my P.J.s all day. It was really nice outside and there were plenty signs that spring is here. Yah!! I can't wait for summer to sit outside in the warm sun and enjoy a cold drink while reading a good book. Oh I love that.
I really wanted to talk about how I've been feeling emotionally lately. I have to say that I've had a hard time adjusting to my new quality of life and to the fact that I can't work anymore or do a whole lot physically. For a few days though, I have been feeling quite better. It may be the 'happy pills' I'm on but as long as I feel better it doesn't really matter why I suppose. I have also been quite the stalker on several CF blogs, some belonging to people that I do not know, because it brings me a lot of comfort. I'm not glad that other people have Cf, I am only glad that we at least have a venue to which we can share our different perspectives on, very often, the same events. I'm left smiling, nodding in agreement, crying and even laughing hysterically. I have so much respect for the truth that is shared and the support that we give and receive. I honestly think that these blogs are as therapeutic as any therapist out there. My feelings are often validated and it makes facing this challenge that much easier knowing that others have faced it before I have and are winning the fight or that I'm holding hands, so to speak, with friends as we enter the ring together. Even the loses have their place as their strength shows they did not go in vain.
I guess I've definitely come to terms with this disease. When I was little I didn't even want people to talk about CF around me. I wanted nothing to do with CF. Only a select few of my friends knew I had anything wrong with me and they vowed never to tell a soul and they kept that promise. In grade school, it was my biggest fear that people knew I was different. I was approached to have a speaker come to my school to teach others about the disease and help spread the word about such an unknown affliction to young children and adults but I refused because I was ashamed. I can't remember if I stopped them from coming at all or if I just made them promise not to point me out. When I was about 12 years old I started coughing a lot in class and I can remember the small beads of sweat that would seep from forehead and armpits when the classroom would be silent, watching the seconds hand on clock tick away, all the while praying for the coughing to stop or for us to be able to talk so the noise would cover my hacking, disgusting cough. If you've ever tried to stifle a cough you'll know that it only tickles the back of your throat that much more. It was horrible. At clinic I would avoid eye contact with other Cfers because I didn't want to be a part of this group. That was then and it really saddens me to think that I was so afraid to accept myself. As I grew up I became more assured of myself and I didn't let it bother me so much. I would tell people without caring what they thought but I still pushed it to the back of my mind and tried to live as 'normally' as I could. Now that I'm much sicker I've really had to face this disease head on. I had lost the Hide and Seek game, it had found me. Not only do I have to accept things but my family, friends and husband do too. I've come a long way and now I seek the friendship of other Cfers when I need it most. Yah to technology that allows us to communicate and support each other. I guess at the end of it all I'm just more at peace with everything. I live with by the mantra 'Everything happens for a reason' so I'm just trying to enjoy the small joys in my day and that's all I can do. I have LOTS of love so I'm really lucky.
I seem to be getting stronger at physio which is a plus. Hopefully I stay this way!
Good night to you all
Carla :)
You ROCK! Your not alone about hiding CF. When Luc and I first met many moons ago, he started off telling me it was a "minor lung disease" lol. Then not long after he told me that it was CF. When we were around my family and friends, co-workers we would just tell people he had asthma (for the record he does too). It seemed as though, it was our dirty little secret and no one else needed to know, it was a "need to know basis." It wasn't until Luc got told he needed a transplant that we had to face the reality of telling the world the truth. Anyways, I am taking your whole blog. Now a days we are proud to have all our fellow CFer's and kick this disease's ass and show it who's boss! Keep up the good spirits, the cocktail of happy pills and your on your way to a great future! xo
ReplyDeleteHey just catching up on your blogging--keep up on your good work. I have been out on the road several times on my bike these days...mad drivers...be careful what you wish for lol! Fellows can are very dedicated to the profession, you are in good hands.
ReplyDeleteI myself understand being a patient sucks. When I had my appendix out, they stripped me naked and put me in a hallway with gown six time to big---it was like being at work with no clothes on! all my colleagues got to see me naked...you just become the "patient".
The last km always seem like the hardest and the longest!! even though you have come so far..keep it up. Did you know the French word ‘La Flamme Rouge’ which means ‘the last kilometre’ in a cycling race – you always see ‘la flamme rouge’ red triangle when there is 1 km left to go… it was used as a positive sign to say don’t give up, even when you are really suffering---love you hope to see you soon.
CF community online is amazing!!
ReplyDeleteway to get stronger in physio! woo woo! thats the way to do it!
- hattie