Tuesday, 20 March 2012

CF has got a brand new bag...


The practicalities surrounding living with CF is something that comes naturally as you get older and used to your routine. When I was discharged from hospital I had a few new drugs to get used to. First of all was my new dinner mate, my insulin pen (and the needles with which to administer it!). Secondly, my anti-anxiety medication to stave off panic attacks. The final new addition is pain relief, only bog-standard paracetamol and codeine, but imperative to take regularly to tackle chest pain. This is on top the digestive enzymes I take to enable me to fully digest my food and an inhaler should I become tight chested when out and about.

My Little Stash!
Before I got particularly ill with CF, leaving the house was easy, simply grab a pot of Creon and an inhaler, chuck it into my handbag and I was good to go! Being diagnosed with CF related diabetes (CFRD) added another sheet of tablets to the mix, but it was still manageable, notwithstanding the various pots of Creon and sheets of Repaglinide (the drug I used to take to control my diabetes) that were littered across the houses of my family and friends! The addition of the extra drugs made me reconsider how I managed leaving the house. I didn’t want to be running around searching for various pots of medication – I don’t have the breath to do that these days anyway! So I decided that I needed to become organised! You may think that being a teacher I would have a fairly organised nature – unfortunately for me, my professional organisational skills don’t translate that effectively into my everyday life! The palliative care nurse I met in hospital pointed out that it’s all very well having my anti-anxiety medication, but totally useless if I’m out shopping and feel I’m about to have a panic attack and the tablets are sitting at home! 

Luke had the brilliant idea of getting a little bag which could be for the sole purpose of my drugs. After much searching, I found the perfect little bag in TK Maxx. All my drugs fit inside and it fits perfectly into my three main handbags... It is, after all, a woman’s prerogative to have many bags!  It also has a nifty little strap so that I can simply take it out on its own if I’m only going to either mine or Luke’s parents for tea. Although a little orange bag may not sound like a great medical revolution, finding and using this little bag has really helped me get out and about more easily and without potentially putting my health in any sort of jeopardy. Whilst I have to live with my ‘end-stage’ CF, I am determined not to let it rule me. Therefore anything I can implement to limit its impact on my life – even if it’s just the use of a little orange bag, is a small victory in retaining my independence! 
Convenient sections...
Look how pretty it is...

















Thursday, 8 March 2012

Body Image...


One thing that has started to get me down of late is, I have to admit is incredibly superficial, but my body shape. To look at, I’m petite at five foot nothing and when I’m well my weight flirts with the 48kg mark. Recently, it’s been a bit lower at around 45kg, but I’m working hard to get it back up, as it is important to have a good body mass index (BMI) when I get called for transplant. 

Annoyingly, eating poorly for just one day can be enough to send me on that downward spiral of weight loss, which ultimately leaves one more susceptible to infection.  Also, when you’ve a lung function of 18%, most of the energy is being expended by simply breathing so not eating enough and having that weight reserve behind you is not great! It also takes such a loooooong time for me to put weight on ... For example I actually lost a bit of weight in my hospital admission, and then put it back on, so irritatingly I left hospital at the same weight as I entered it! I would have liked to have been heavier when I left. Now I am eating like an absolute pig to get me back to my ideal weight. The trouble is, all my weight collects around my middle, so I have really skinny arms and slim legs but a bit of a belly. I am by no means complaining, as my main priority is remaining fit for transplant so having a bit of a belly is a small sacrifice to say the least! 

Shellfish Platter!! (Sharing with my friend James!)
As I’ve been raving about, I was so happy to be home and able to celebrate my birthday exactly where I wanted to... The venue of choice being my local seafood restaurant where I can gorge on shellfish (including oysters) – an odd passion you might think, but am making the most of eating such things as I will be prohibited from doing so after transplant (due to taking immunosuppressive drugs). It is a girl’s prerogative to dress up for such events but one is presented with the age old dilemma of - what to wear? Obviously this called for a trip to Basingstoke town centre to find a new dress. Going clothes shopping is a mission for me at the best of times, due to my need for old ‘wheelie chair’ and getting breathless quite easily. Aside from the logistical obvious, something else makes dress shopping even more difficult for me. This being the lovely gift that Cystic Fibrosis can bestow, the ‘barrel chest’. As CF progresses and the airways become more narrow and inflamed due to infection and scarring, sufferers are unable to exhale all the air they breathe in, which causes the chest to remain expanded (by chest I mean ribcage, not breasts unfortunately!). Over time, this changes the shape of the ribcage and gives the chest a more rounded appearance. Whilst I don’t have a ‘noticeable’ barrel chest, my chest measurements are much broader than they were five years ago.  This gives my body slightly odd proportions, as I am a size 8 on my bottom half, yet I struggle to get a size 12 top to fit (unless it’s stretchy).  We trundled of into town after having researched dresses thoroughly first (so we could be efficient in terms of my energy and oxygen use!) and had my heart set on a cute red dress from Oasis. I don’t usually try clothes on in shops as it requires too much energy, but I felt strong enough to try it on and I didn’t even get breathless doing so on my new flow of 6 litres a minute, which I was pretty pleased with! (Also, if it didn’t fit poor Luke would have to bring it back the next day!) Sadly, the dress looked completely stupid and the size 12 was so tight around my ribcage I couldn’t bear to keep it on, let alone think about sitting down in it. Disappointed, but determined not to be beaten, we perused Debenhams and after a LOT of searching we found a dress that looked like it would be acceptable. This time I needed Luke to help me try it on as I was quite tired from all the shopping but it fit!!! Not only did it fit, but I felt really comfortable in it and it looked nice too! 

Admittedly my body shape and clothes shopping should be by far the least of my worries it can make me feel down, particularly when shopping for dresses. Earlier this week I was having a clear out of old clothes and quickly realised that over half my wardrobe doesn’t actually fit me anymore, due to my changing chest shape. I ended up getting rid of most of my old teaching wardrobe, as well as a plethora of other clothes – shirts, blouses and jumpers that simply don’t fit. Whilst ill-fitting clothes are not major obstacles I still felt despondent, and amongst everything else it simply made me feel further ‘trapped’ by CF. Cystic Fibrosis took my dream career from me (well, for now at least), my independence, my mobility and now it is infringing on something as mundane as my choice of clothes.


Me in my much sought out dress!
I don’t mean to sound vain or completely depressive, but this just illustrates the extent to which CF restricts my life. However, I must be thankful for the fact that I had the strength to clear out all those old clothes and I didn’t get too breathless doing it and I can look forward to amassing a new wardrobe post-transplant!