Friday, October 21, 2016

8 years 9 months!

Tomorrow marks another lungaversary! Yay! Steadily on my way to 9 years!!! Feels unreal! Every time I see a date on an old magazine, or on the internet or at work (when I still worked) the first thing that goes through my head is "Was this pre or post new lungs?". And as time goes on I'm seeing less and less "pre-transplant" dates... Which is not surprising considering it's almost a decade now! The world was a different place! And I would have missed out on all of it but I didn't :-)

This week we said goodbye to Bianca :-( She has left us for Melbourne... very sad, but one day we will go visit and bum free accommodation from her in Australia!

Tomorrow we're off to Secunda with Andrew and Brendan to meet baby Benjamin Moore! We'll be spending the night there, so will be awesome. At least Cecile only moved to Secunda and not Aus! Excited to see her and Dean again. Not much other news, trying to see the bio twice a week now, and been working with heavier weights, so arms are really stiff today! Feels good to have sore muscles from exercise though! Made a little photo grid of all my orchids in bloom.... they are looking spectacular at the moment and our house looks great! Seven are currently flowering, one has buds that will open soon (looks like a white one) and I think there are 3 with no flowers. Very chuffed with myself, I've never had this many bloom! Most of them have been gifts over the years.... definitely a gift that keeps on giving!

Oh and we've also had some RAIN!!! It's been great, SA is experiencing like the worst drought in 25 years or something so the rain we've had these last few days has been amazing. Hopefully my garden will look a bit better now!

Thursday, October 13, 2016

Fat, muscle, weight, CF.... all things Body Image

Disclaimer: These are just MY observations regarding weight and body image, I realise it's not the same for everyone... even some other CF patients may not necessarily agree with my views.

Today I watched a documentary called "Thin"... it follows the story of a few women in an eating disorder rehabilitation clinic. It's not a new documentary/movie, I think it came out in 2006. It was so interesting and sad to see the way these girls saw food and their bodies and how it absolutely ruled their lives.... Ultimately the one lady passed away at the age of 33 due to her eating disorder (anorexia I think it was). Their world is/was sooooo different to the one I mostly grew up in, where I was always encouraged to eat, and weight gain was largely seen as a good thing.

There were times though as a teenager (during some really healthy years) where I felt fat too and tried to lose weight as well, so I haven't spent my whole life trying to gain weight. I probably also gain weight easier than the average CF person from what I've seen and heard. Back when I was 16/17 years old I felt "fat" (I think I weighed about 56kg back then... that's 123 pounds). I went on an all natural diet, cutting out all processed food and sugar and even a lot of fruit and vegetables per the advice of some sort of alternative medicine lady who thought I would have less lung infections this way. (I didn't change any meds, so just tried to supplement my medication with a different eating plan.). After following this strictly for a few months, I DID manage to increase the gaps between antibiotics by a week or so, but at a terrible cost. I lost quite a few kilo's picked up pneumonia or a bad flu or something and lost more weight, along with lung function. I ended up losing like 10 kgs in total. At that point my parents were feeding me anything that I was willing to eat. Even though I was happy about the initial weight loss, my body and lungs took quite a knock from the whole episode, and I never managed to get my weight up that high again pre-transplant, no matter how much I ate or how much Ensure I drank.

The point of that story is that I realised that for me (and this is what those eating disorder girls didn't see) weight = HEALTHY. Looking back at my life, I've clearly been the sickest and weakest when my weight was at its lowest. And there is a reason why you need to be a specific weight in order to be listed for transplant... it means you are stronger. And your body needs to be at a certain weight in order to function properly. I've also generally been physically fitter at times when I was fatter. So at the end of the day EVERYTHING has been better when my body has some extra kilo's to play with.

I've seen friends with CF BATTLE to gain weight. They have feeding tubes inserted surgically in order for them to get night feeds and extra calories. They go through a lot of pain and discomfort just in order to gain a few precious pounds. This is of course on top of taking enzymes to digest the food every time we eat and giving yourself insulin shots if you have CF related diabetes. Reaching that goal weight can be a full-time job.

Other people often joke and say CF people are lucky that they can eat more than normal people and not gain weight (or not AS much), but when you're that desperately trying to gain weight it really IS harder than losing weight! I will admit that I HAVE often enjoyed the fact that generally I don't have to ever restrict my eating (usually only when on high dose steroids and sugars are acting all out of whack), so yes SOMETIMES it is nice. But that is normally the exception. I have also hated having to FORCE my self to eat (or having a parent do it) when you can't even breathe properly, have zero appetite and eating makes you more out of breath - as does a full tummy, and your life literally depends on you gaining weight. So no... it's generally more unlucky than lucky I would say.

So then apart from people glorifying unhealthy skinniness, in the last few years I've seen THESE types of annoying memes/jokes/motivations do the rounds:

This makes me SOOOOOO ANGRY on so many levels!!! Firstly, who the f%$k decides what "real men" like? A bunch of bored women? And are they implying the naturally thin  girls or girls with health issues or who are skinny for whatever reason are only fit for dogs???

Can society please start glorifying ALL body types that are normal and trying their best at being healthy? How cool would it be if STRONG was something women aimed for instead of skinny. What was also messed up in that movie I watched was that the girls weren't allowed to exercise for fear of them losing more weight. How about getting them to build some muscle rather and gain weight in the process too? Teach them that strong > skinny.

In conclusion.... this post might be a bit all over the place and random, but I'm jotting down my thoughts and observations regarding the topic. Right now I'm probably the "fattest" I've ever been, at about 59 kg (130 pounds). So my BMI is 23. (I'm 1.6m tall). On the higher end of normal (apparently normal is 18-25) and I'm proud of it! It means I'm stronger and have more reserves in case of an infection, and I will survive longer. So I LOVE my fat rolls and my muscles (they do as much as they can with what my lungs allow them to) at this point in my life!

So what I hope people will take from this, is: if your body is healthy and happy, don't wish you were prettier or thinner, change your thinking to being STRONG. If you DO weight too much, getting stronger by getting fitter will automatically result in losing weight... although everyone knows muscle weighs more than fat... proving my point. And obviously this is just physically speaking... this post not about intellectual stuff or feminism etc etc. Getting off my soapbox now!

Thursday, October 6, 2016

Back to reality and utter FOMO about not taking part in Nationals

Since Anna and Casey's return life has just been getting back to normal. Had three Dr's appointments last week, all were fine, lung function was even up a bit. Clearly holidays are excellent treatment. Three of my orchids have started flowering... below is one of them (saving the others for future blog posts... just in case nothing else happens in my life)

My friend Louzanne (long-time friend since age 5 or so) was here for work on Friday and extended her stay to include the weekend. Such a treat spending time with her. Miss her so much. On Saturday we went to a craft market-thing called Kamers (used to be called Kamers vol Geskenke, which is Afrikaans for "Rooms full of gifts"). They normally have an annual market here and have always wanted to go. It was great! We also had supper with my parents, and watched the new Bridget Jones movie. That was also lots of fun. Mostly just catching up though!

This week has been pretty chilled... went for bio again, might be stiff tomorrow... had a pedicure with my sister on Tuesday, which was a nice treat. Car also had a flat tyre so was stuck at home on Monday. Luckily Chris fixed it the same day, yay. Yesterday also marked exactly 8 years since I met Chris. Not sure if I've ever mentioned this but we met on an internet dating site and had our first date on the 5th of October 2008.

The National Transplant Games is taking place in Joburg this weekend. Registration happening today already and the AGM tonight. When I was still involved with transplant sport I was on the committee organising the Games. For health reasons I've had to leave the committee. I obviously also cannot participate anymore. Two years ago when Nationals were in Stellenbosch I couldn't play squash or do the race walk anymore, but did some field items and Petanque. This year I'm not doing anything. Rather sad and depro about missing out on all the fun. And not experiencing it in my own city, Maybe one day by some miracle I will take part again and play squash again and go to the World Transplant Games again.

Monday, October 3, 2016

Local Touristing with Anna and Casey

In between all our adventures around the country we also showed Anna and Casey some local spots... The Apartheid Museum (which was AMAZING,,,, my first time there and we didn't have a chance to finish up properly as we ran out of time so have to go back again), the Voortrekker Monument (for some insight on some of my forefathers and a really stunning monument, the Union Buildings and Nelson Mandela Statue (I haven't seen the statue yet myself and it was awesome!)

We also exposed them to some Cape Malay food at District Six Eatery which was YUMMY and the best milk tart ever... I took Anna shopping in Sandton City and we got matching cat books. Also note the matching kitty t-shirts Casey got us with a pic of a kitty that ate too much.... basically what Anna and I do the whole time. They were also fascinated by the big traffic cones we saw at Impala centre.

I also took them for a Saturday afternoon drive through the "scary and dangerous" Johannesburg CBD (I think my driving was scarier than the location). We also had brunch at the best Lemon Meringue spot in Jozi... the Silver Birch at Lifestyle Garden Centre.

I think I've covered everything now! Finally! It was a great trip. Don't know when we will see them again but soooo fortunate to have had this time together. AND that my health lasted throughout the trip.... We were really worried after January's lung collapses and with my lung functions dropping over the last few months. But I made it and the trip was awesome. It would have obviously been better if I could breathe properly and not have to hold back physically and the O2 concentrator didn't take up so much space in the car and I didn't have to worry about all the extra stuff I need to pack these days. But all things considered I was very fortunate to have experienced this and seen all these places again that are so close to my heart. And that my health didn't deteriorate during the trip and we didn't have to rush back for any "medical emergencies",

I don't know what the future holds but I really hope that more travelling will take place one day. We will be going somewhere close by in March for my dad's 60'th birthday so that should be a little something at least.

For now it's back to reality... Keeping on keeping on and making the most of what I can do.

Short stop in PE and ADDO

On Thursday the 22nd (our lungaversary date!) we stopped in PE for lunch and a quick drive-through before heading for Addo Elephant Park. I haven't been in PE since Dec 2013 when I helped my sister pack for their move to Joburg. We showed Anna and Casey around a bit, and then had lunch with Antoinette and Andrew at Something Good (used to be a dodgy roadhouse but now very nice!). Was nice being there again.

Our Addo accommodation was once again really really cool, but the weather terrible! Froze our butts off! All in all we saw amazing animals though! Even some lions on the morning that we left the park! Posted all the Addo pics in the post below. Was rather sad that this was our last holiday destination on the epic road-trip with our doppelgangers.

Sunday, October 2, 2016