It’s been over a year that I’ve been off work because of my declining health and quite frankly I often get a little tired of people asking me if I get bored during the day or if I struggle to find things to do throughout the day. Then I thought, some people just don’t know much about my CF or about my daily routines or about the fact that going back to work is not a choice that I have the privilege of making… my health has made that choice for me (as much as I’d like to believe that I actually made this choice). So, I’ve decided to put together a list of things I’d like people to know. Things I feel strongly about and other things that are just, well - me. I understand that whether people read this or not, is out of my hands. I haven’t blogged in a long time and may have lost the interest of some readers. Nonetheless, I’d like to put these thoughts out there.
· Mornings are the hardest for me. I’m out of breath, I spend 2 hours on inhaled medications, physiotherapy and breathing exercises and I’m usually coughing up so much mucous it makes talking difficult. So… if you want to actually talk to me, call in the afternoon or evening.
· It amazes me how much sleep and rest my body needs. In a good week I can get up around 9am and finish my meds by 11am, attend my medical appointments, get errands done, get dinner ready and maybe even have a visit with my sisters, niece and nephew or go for a coffee with friends. In a bad week I need to sleep until 10 or 11am. I don’t finish my morning meds until about 1pm and I get exhausted after only getting one thing done a day (e.g medical appointments, grocery shopping, taking Bettie our for a walk or cooking dinner). This is a BIG change from when I was working. I’m still getting used to the fact that my body works everyday to fight whatever infection I have and it’s taken a long time for me to realize how important rest is.
· Although everyone loves to hear that they look great, I actually get tired of hearing this. Please don’t think I’m being conceited but CF is such an inside disease. Although I may have done myself up with makeup, I often feel like crap on the inside so hearing I look great is not necessarily what I like to hear because it’s not a reflection of how I feel. What I DO appreciate is being asked how I’m doing and having the freedom of giving an honest answer. Having people just listen and show they care can be incredibly supportive and helpful.
· There are days when I really struggle to stay positive. I’m in new territory with my health and I’m learning how to look on the positive side like I always have. I’m learning that support is something that helps tremendously. Support and love from family and friends has never been more important. I hope people remember this.
· Animals are amazing creatures to me and they are often where I get my positivity. My life list includes a lot of experiences with animals including one I got to do a couple weeks ago with a friend. It was INCREDIBLE! I would highly recommend the dolphin encounter at the Vancouver Aquarium. I was so impressed and amazed!
· There are times when I love to lose myself in a great book, a fantastic movie or a hilarious TV show in order to forget about my disease.
· Almost everyday I think about our (James and I) desire to have kids and I wonder if this will actually ever happen. I want to believe it will, but my decline in health puts a HUGE barrier in front of this dream.
· I never want to be the kind of person who is defined by their struggles. But at the same time, for some reason I want people to understand how tough living with CF can sometimes be. I think it’s because I just don’t look sick, so people automatically assume I’m a regular person who’s just taking a bit of time off work and who just happens to cough a lot. Not that I’m not a regular person… you get what I mean.
· I have the most wonderful family, quite possibly in the whole wide world.
· I ’d love to meet Ellen DeGeneres one day and tell her how much I love her show and how it’s always been such a great distraction for me. From the many times I’ve been sick at home on IV or in hospital, the times I was waiting for James to wake up in ICU after his accident, to the times I simply needed a laugh.
· There are many places I’d love to visit such as; England, Scotland, Spain, France, New Zealand, Africa and also do a road trip through the States and back across Canada. I’d also like to do these trips free of CF-health worries!
· I’d love to go to a live taping of Late Night with Jimmy Fallon. I have a major crush on him and I absolutely love his humour and his ability to be genuine with his guests.
· I loathe cigarette smoke. It killed my mother-in-law and it was a huge reason why my loving grandmother developed lung cancer even though she had quit smoking for nearly 35 years. I don’t understand how people choose to worsen their bodies just for the feeling they get from smoking a cigarette. If that’s not an addiction, I don’t know what is. I just hate watching people throw their lungs away while I do everything I possibly can to prevent my lungs from getting worse. What a privilege it is to choose the fate of your lungs versus having that fate decided for you.
· Having said that, I am so very very VERY proud of people who have QUIT smoking! I don’t know what it’s like to be addicted to nicotine, but I can appreciate how difficult it is to kick the habit and that’s why I am so very proud of those who have quite. Tara Wood you are awesome!!!
· I find it funny and irritating when people ask how I’m doing and I respond with an honest answer such as, “Well, I’ve been needing a lot of sleep lately, my breathing isn’t great and I’m coughing a lot more”. And they respond with “Ya I’ve been feeling under the weather too lately. I think there’s something going around”. This isn’t feeling under the weather. This is CF, which you don’t have. So please don’t compare yourself with me. But thanks for asking how I’m doing instead of saying “Well you look good anyway”.
· Sometimes I wonder how certain doctors or nurses passed their exams and got into the health care field.
· I’m so thankful the doctors, nurses, physiotherapist, dietician, pharmacist and social worker at the CF Clinic are GREAT at what they do!
· I strive to be grateful for everything in my life on a very regular basis. I really do have so much to be thankful for. But I must admit this is sometimes a struggle as I get older and don’t have the things I’d like in my life, like children. It’s something that challenges me and something I think I’ll always need to work on.
· I hope I never become a person that complains about the most mundane things on Facebook. I’m all about venting, but before you post whatever your complaint is publically…. Think about who might read whatever you’re posting and think about how good you actually have it. I include myself in this.
· I think I’d like to write a book one day.
· I have a serious crush on Channing Tatum… please don’t make fun of me like my husband does!
· Nausea and being out of breath are the two things I hate most in this world.
· I admire people who are able to put their worries aside and focus on something positive.
· Schmitt from New Girl is quite possibly my favourite TV character ever… and Phil from Modern Family… and Cam.
· In no way do I think my life is really hard. I mean, I have a great place to live, I have an amazingly loving husband who I almost lost 4 years ago but didn’t. I have the most supportive family anyone could ask for. My dog is hilarious and I love her so much. And I have the privilege of knowing some of the greatest people in the world (to me). But part of me feels it’s just not enough. I want more out of life. I want to be able to travel when I want and not have it depend on my health. I want to have a family of my own. I want to go back to work. I want to spend the hours I currently spend on my health each day doing something fun. I want to make a difference in this world. And most of all, I want my life to move forward instead of standing still.
Thank you all for reading and for your support. It means the world to me.