Thursday, July 13, 2017

Fitness declaration, dreams and nostalgia

Today I miss exercising a lot. Intense exercise, not the sad weight-lifting that I currently do. Spinning, playing squash, running... It's been 4 years since I've been able to do this properly. Four years of gradual deterioration. Preceded by 5.5 years of the most amazing breathing ability ever known to myself. I miss it SOOOO MUCH and wish I had worked harder at my fitness when I had the chance. It wasn't easy with working full-time, but I wish I pushed myself harder. I should have played more squash, done more spinning classes, just more of EVERYTHING CARDIO. 


There is nothing like the feeling of your lungs FILLING with air, and your heart beating, not because you climbed a flight of stairs and want to pass out, but because you are ALIVE and MOVING. I think it's taken me 23.5 years of shitty breathing, those 5.5 years of brilliant breathing, and these 4 years of losing it again to totally appreciate and realise how brilliant it is and how it should never be taken for granted. 


If I ever get the opportunity to breathe freely with healthy lungs again, I will make it my goal to push my body to its physical limits. I will try new activities, I will join a squash club... I want to run further than before. I want to do spinning again! I want to SWEAT! I am able to do so little at a time now, that I haven't sweated properly in AGES (except when my blood sugar drops too low, but that's a whole different topic!). I swear there will be no stopping me... 

This is what I dream of... it keeps me motivated. It pushes me to do what little I can right now. One day I will escape this frustrated feeling... one way or another. Until then these daydreams (and sometimes actual dreams at night) will keep me going. Patience... it will be worth it.





Tuesday, July 11, 2017

Meeting Carmen in person & Louz and Wouter's visit!

I've had an amazing couple of days. It feels like my birthday or something with the friends that I've seen and the unnecessary presents that I've been surprised with! Feeling very lucky and blessed right now. Louzanne and Wouter arrived just before lunchtime on Friday. Chris and I picked them up, and we met up with Chrislie, Adriaan and Andrew at Paul for lunch. On Friday evening we had a games night ar Brendan's house which was so much fun.


On Sat we had a bit of a historical tour of Pretoria. We went to the Union Buildings and Melrose House. It was followed by a Starbucks and a completely different kind of Pretoria culture! On Sat eve we had supper at Casalinga, an Italian restaurant in Muldersdrift. I've only been there once before but the food is AMAZING. We weren't disappointed. Super busy but awesome day!








On Sunday we spent a chilled day at my parents' house. We also watched the movie "A United Kingdom", which is a must-see!!! I was pretty wiped out after Saturday's activities. Yesterday we had brunch with my sis and Adriaan in Melville, before heading for Constitution Hill. I've never been there before, and so glad I was finally able to! We didn't have time or O2 battery-life to see all of it, so need to go back at some point! If you live in Jozi, you really need to go on a guided tour there!










So all in all a brilliant weekend! Miss my friend so much, wish we lived closer to each other!!!!

Today I got to meet a NEW friend in person!!! Carmen!!! We've been chatting for a few months now, and she's in town at the moment to we met up! Yayness! It was great, like we've known each other forever. I was so spoiled with gifts, and completely unprepared to return the favour! Next time! I must say, since I stopped working and have gone onto disability, I've met so many amazing people through Love Life; Gift Life and just in general (like Carmen). Each chapter of life has it's own surprises and benefits. Trying to look past the annoying-ness and frustration of my current HEALTH situation and appreciate the quality time I've been able to spend with amazing new people and my favourite "old" people.


On a sad note though, a girl that I knew who was waiting for lungs too lost her battle on Friday :-( I wasn't expecting it to happen and really hoped that she would get lungs :-( It gives me more motivation to work hard on LLGL, but at the same time it makes me feel so hopeless and like we're fighting a losing battle sometimes... *sigh*

Sunday, July 2, 2017

July - past the halfway mark


We're in the second half of the year!!!! It doesn't have any real significance in my life but hopefully the second half of the year has some good things in store for us. VERY excited because my long-time friend Louzanne and her hubby Wouter are coming for a visit!!! Just because :-) Arriving at around lunchtime on Friday, and leaving again late on Monday afternoon. I'm not able to be very physically active, but we will be EATING GOOD FOOD.

It's also LLGL's #save7lives week, which is going to be an even bigger success than last year! Hopefully it raises some lasting organ donation awareness. Please feel free to participate! (check out our Facebook page/ Twitter/ Instagram tomorrow for details).


Last week was a bit of a blur, a few of our meetings got rescheduled, so it went a bit differently than planned. On Monday Chris and I went to have our driver's licenses renewed. It has to be done every 5 years. When I renewed mine in 2007 I was on the waiting list for lungs, doing really unwell and didn't own a portable O2! My mom took me then, and it was quite a mission. It was in PE though so the building was a lot smaller and a lot less walking (almost no walking) was required. This time it was quite a bit of walking that was needed, more paperwork somehow, and luckily I had the portable O2. Once we had all our paperwork sorted, we were told to go upstairs to join the que. Just as I got to the top, huffing and puffing away... they said I can go to the disability line downstairs! Went back down (luckily Chris could join me), and luckily there was only one other person in front of us. So from there on it went really quickly, They were super nice to me, even asking if I'm warm enough, and asking me if I'm OK while Chris went upstairs again to pay. At least that bit of annoying admin is out of the way now! Also... I've been driving for 15 years this year... that's just under half my life. Yay for outliving expectations.

I also saw Adriaan quite a bit. Soon he will be in day-care as Chrislie will be returning to work towards the end of the month... so need to make the most of this special time with him!


I also made a scrap-book of all the magazine and newspaper articles that I've been in (and that I have kept) over the last decade. I've never done scrap-booking, but Typo had this "kit" on sale, so I thought it's worth a shot to keep these memories safe. It was rather fun to do. Definitely not a hobby that I would take up, but for this album thing it was good. I will stick to crocheting and make useful items rather :-p


Lastly, I bought these new boots on Friday... I've given a lot of clothes away since I stopped working at the beginning of last year, gave a few of my old work clothes to my sis, organised my cupboards and been trying not to buy any unnecessary clothing. However when I saw these boots I fell in love... They were on sale, but still the most expensive shoes I've ever bought! They are so perfect... warm, comfortable, leather, soft... Now I literally HAVE to live for a really long time still to make this purchase worthwhile LOL!!! I don't want to take them off... they make me want to walk and they make me feel strong... Like I'm in my own little army :-)


Friday, June 23, 2017

Yesterday was 9 years 5 months

This week was pretty bleh again, but hopefully things will start improving soon. Yesterday was another lungaversary. pushing closer and closer to 10 years. Having quite a few lung-related dreams naturally... 2 nights ago I dreamt that I had to "prove" to someone that I can't breathe well. I tried to run, in order to show them how I will literally just pass out if I tried, but I didn't... I managed to run just fine, apart from my leg muscles not being used to it anymore. They didn't believe me that my lungs aren't working properly anymore :-( I failed the test.

I mentioned this briefly two posts ago... but it really kind-of sucks in some respects when you're in end stage organ failure but look "good". I'm really glad my weight is good and I'm not  complaining about NOT looking BAD (no person ever would!), but you get tired of hearing how "GOOD YOU LOOK" when your chest feels like it wants to explode. Rather tell me "You look like you need new lungs" LOL! Or "You look tired"... or "You sound really out of breath". That makes me feel better... like I'm not imagining these symptoms. Last time I waited for lungs I looked so much worse than now, and a lot of it is just hard work  and the result of a different lung disease.


On Sunday we celebrated Father's Day with my parents. Had bio on Tuesday, which was so-so. Not too bad. Did some random errands in the week, saw my nephew... nothing exciting, although seeing Adriaan grow is ALWAYS amazing.



Oh I also attended the National Colours Ceremony last weekend, representing LLGL, where the new athletes forming part of Team South Africa for the World Transplant Games were awarded they Protea blazers. The Games start on Sunday, and I feel like I should avoid Facebook to try and curb my jealousy! Wish I were also flying to Spain tomorrow.


On a positive note though, LLGL released our posters this week!!!! So proud of our hard work! Check out the posters here if you haven't seen them yet!

Saturday, June 17, 2017

Rough Week and Silver Lining

It's been almost 2 weeks since I've blogged! This last week has been very rough physically and mentally, and one day I will blog about it, but the time's not right yet. (Not trying to vague-blog, I'm promising a good post in the future!).

Highlights of the last week.... Fawny turned 30! We had a ball of a time at the new Rocket in Bryanston. Had a great time, would have been even better if I didn't have so much trouble trying to find somewhere to charge my O2! And if I could just generally let my hair down and have a bit more fun, but "letting your hair down" can be a bit hard when you struggle to breathe. However all things considered... I had a fantastic time.



Also chilled at Brendan's house twice since previous post... last week Friday I went there for some amazing soup, and yesterday we went for an afternoon braai. Also spent some quality time with my nephew, the gorgeous Adriaan.



On Thursday I was having a very bad day but got so spoiled by my sis (and I'm guessing Adriaan also had a hand in there because he loves his aunt) with roses and donuts!!!! Chris has also been soooo supportive. Tried to get love from Pumpy but failed. He ran away. As you can see,




At the end of the day... what has been amazing in this strange week is how many people I have who pray for me, and care about me. Not trying to brag about it obviously, but in a world where you see so much negative stuff all the time, you get some AMAZING PEOPLE. I've been overwhelmed by love, and that is pretty amazing. I'm a very lucky girl!

Sunday, June 4, 2017

Hello June, Hello Winter.

June is here! Winter too.... Not a fan of winter, but luckily Joburg winters are short. Two hand a half months from now things should be heating up again. Apart from the usual annoyances that winter brings.... everything outside here is dead and yellow, cold nights, smoggy and smokey air, DRY air... it's also so much more exhausting to get dressed! In summer it's easy, you throw on a dress. Now getting jeans on is tiring, putting boots on is tiring, shirts, jersey/jacket... I need to catch my breath after getting dressed!


It was great not being sick with my cold anymore last week. I could go back to bio (I was pretty useless), went to the shops with my sister and Adriaan, we introduced Adriaan to Andrew and had a yummy lunch at Paul... so back to "normal". I also finished my "corner to corner" blanket that I started at the end of last year (I've made a few things in between), and it looks great.


Cystic Fibrosis awareness month is also over now. Post transplant with CF is very different to pre-transplant, so it's been a very long time now that I haven't felt like I'm 100% "CF patient" anymore. Yes my pancreas is still a bit annoying but it doesn't affect my quality of life much. Even now with bad lung function and being back on oxygen 24/7 for more than a year now, it's COMPLETELY different than with my CF lungs. The mucus situation is very different.... there is almost nothing. My oxygen saturations are better than they were but I "feel" lower O2 sats MORE??!! Previously I would feel pretty good and considered it a great day if my sats without O2 was 83% (A bad day was in the 70%'s, and I wasn't even on O2 all the time). Now I'm gasping for breath when they're 85%.

Also, if I sit really still and take off my O2, my sats don't drop too badly... my heart rate just goes up. However as soon as I move the sats drop immediately. I also "look" much better. I'm not underweight or thin... I'm less blue, apart from the oxygen on my face I LOOK fine. In terms of my daily nebulising routine.... I neb with Colistin antibiotics for the Pseudomonas that I had last year twice a day. With the old lungs it was  Duolin, Pulmozyme/hypertonic saline, and also the Colistin antibiotics AND physio. However now nebbing doesn't make my breathing easier at all. Duolin doesn't open up my lungs, there is no relief that came with coughing up some junk. The Colistin just MAKES my wheezy. So basically when I'm having a bad day there is nothing I can do about it. I just have to wait it out.


On a more positive note... went to a great Girls Night In at Fawn's house last night. We watched two rather bad movies ("Don't Breathe" and "Mother's Day"... the latter was SHOCKINGLY bad!!!), but it was great fun. Also got to spend some "quality time" with Fawn on Friday when we were waiting for our lung Dr!



The coming week should be pretty productive, a few outings planned. Let's hope June is a great month.

Friday, May 26, 2017

Bucket-list item... craving a swim in the sea

So I haven't been on the beach in my bikini since early Dec 2014 (and that was just one day in Cape Town... not a beach holiday). Before that was in April 2013 in PE (also only one day swimming in the sea, 2 days on the beach) ... and that's the last time I swam in the sea. To say I miss it is an understatement. I regret not making more of an effort to get to the sea in these last few years while my lungs have been slowly fading away. Unfortunately leave from work was limited, and we maximised that time by going to San Fran and other "bush" holidays not involving the beach.


As soon as I'm able to one day, I think a trip to the Durban-side of the world will be in order... only a 6 hour drive away and the sea is nice and warm. I used to go to the beach almost daily growing up in summer. There is nothing like the sound of the beach... the feeling of coming up after the first time you dunk your whole body under the waves. Collapsing down on your towel breathless (because you exercised, not because you put on a pair of skinny jeans) after a long time playing in the waves, feeling the sun beat down on you. Obviously now I'm older and wiser and immune suppressed so unlike trying to tan as a teen, I will be lathered in SPF 50! There is also is certain type of appetite that only a few hours in the sun, sand and sea invokes. We always scoffed down cookies and tea, biltong or Salticrax when we were back home, after taking a bath to get all the sand off!

These pics are all from the last beach visit in Dec 2014. I did get rather out of breath but nothing like I would now (right now I would collapse and drown as soon as one wave hits me LOL).