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!  

Wheels and High Heels

As my CF has progressed, the most noticeable impact it has had on my life is the way it limits my daily activities. My parents were very good at making sure my CF interfered with my life as little as possible whilst growing up. Of course, we were very compliant with treatments and so on, but they certainly didn’t wrap me in cotton wool! Although I often had IVs at home and lots of physiotherapy, I pretty much lived a normal life. Many people didn’t even realise that I had CF. However as the disease naturally progresses, things do change and one has to adapt to them. Since 2008, my relatively normal life became limited and restricted, almost overnight as the result of a devastating chest infection. Twenty three years of normal living was then reduced to a life of imprisonment – my mind and soul are still of an outgoing, scrappy lass, but my body just cannot match that. I still struggle with these feelings of incredible frustration from time to time. 

 As I discussed in my previous blog my lung function is, at best 18%. This means that not only am I tethered to oxygen tubing twenty four hours a day, I now have very limited exercise tolerance. In real terms this means I can just manage a flight of stairs and general pottering around the house and the garden. I didn’t always use to be like this. I used to be very active. I used to jog daily, walk to uni from my student digs (approximately 2 miles) hold down a busy teaching job, partake in additional evening activities and still have energy to go out socialising at the weekends. Now walking 100 metres feels like jogging for half an hour. I don’t necessarily get as sweaty, but it’s the equivalent in terms of how breathless I feel. My oxygen saturation levels (sats) also drop dramatically when I exercise, which puts more stress on my body and for prolonged periods of time is dangerous. To give an analogy, it’s a bit like being at a high altitude. My sats are already lower than average so when I exert myself they drop fairly quickly.  It’s a really difficult position to be in, as I need to do a certain amount of exercise as part of my daily physiotherapy, but I need to be careful to get the balance just right so I do not overdo things and exhaust myself. 

Over the years it’s become more and more apparent that breathlessness is really invading my life. Routine chores, including the vacuum cleaning, are now too strenuous to manage. Whilst I’m not the biggest fan of housework (who is?), it is frustrating to not be able to get on with such a mundane task! However, I am able to cope with the lighter housework, so I’m not off the hook entirely! Another humdrum task to succumb to my breathlessness is the weekly shop.  Walking around the supermarket would require me to make regular stops to sit down to get my breath back. Medically this is quite dangerous, but realistically this is a bit impractical and shopping in this manner would take decades! The doctors at the Brompton suggested investing in a wheelchair, so that I could keep living as normal a life as possible. I also need someone to push me at all times, as using a self propelled chair would defeat the object of not exerting oneself! Luke’s parents very kindly bought me a chair, which has enabled me to ‘get on’ as my family would say! 

The early days of being pushed around in my chair (or ‘Wheelie Chair’ as she’s been unimaginatively christened) were odd. The most striking oddity was getting used to talking to people’s mid-drifts unless I looked up. Being a petite lady I often have to look up anyway, but shrinking from 5 feet to 4 feet is quite noticeable! More oddities include, not being able to see over the counter of some shops as well as relinquishing control of my movement to a trustworthy (!?) driver.  Oh yes, and the comedy that ensues from negotiating the pavements and various surfaces of our fair towns and cities. Most places are accessible by wheelchair but I feel the term ‘wheelchair friendly’ is a bit of a euphemism in some circumstances! The smallest lip or slight step can be quite difficult to navigate. I have to say, I was somewhat taken aback by the different and often frustrating challenges posed by the terrain to wheelchair users. Cobbled streets, steep hills and gravel to name but a few pose some real logistical nightmares. I love visiting historical houses, but I seriously doubt that the architect of properties such as Highclere Castle had wheelchair users in mind! We discovered this when we couldn’t access the upstairs rooms! However, registered disabled persons do get discounted entrance prices. Now we know why! Having a wheelchair has really helped me to try to live a more normal life, during this time of waiting. Luke and Ian were kind enough to take me to Marwell Zoo the other day. I had a marvellous time. On the other hand, Ian and Luke were exhausted... Largely from having to push me around the entire park and up and down rather steep inclines! 

Onwards and upwards!

Shopping used to be a favourite past time of mine (I have a particular penchant for shoes!) however, needing a wheelchair to do any hardcore shopping has somewhat dampened my enthusiasm for the activity. Shopping for clothes has become a bit of nightmare, especially with a husband who doesn’t really understand the way women shop for clothes in tow. As I am of petite stature (and am picky), shopping for jeans has always been a challenge, but now it’s at a new level! Many ladies will know that when clothes shopping you often visit a range of shops and look at styles and maybe try a few pairs on... Then, inevitably some shops are revisited to ensure the best fit and of course the biggest bargain has been achieved. Needless to explain, poor Luke, tired from pushing me and loathing shopping, was not impressed when I bought jeans from the very first shop visited!

Shopping for food is usually less eventful, as supermarkets are incredibly wheelchair friendly. The wheelchair trolleys are a bit cumbersome but you do get used to them! However, we have often made the mistake of opting for a basket where a trolley really should have been chosen. It is on occasions like these I become a trolley myself, with a little head peeping over the top of the broccoli and bread! It is a bit disheartening to have to relinquish so much control to someone else whilst choosing something like your food. It has been difficult to let go of being able to have a proper rummage through the veggies and various items on the shelves. However, Mum usually takes me food shopping and she has a canny eye for a bargain, so it’s not all bad. I also have to remind myself that hopefully, this is only a temporary situation and it won’t be too long until I am able to rummage independently again. 

Occasionally I have what I like to dub ‘down days’. I don’t like to bathe in self-pity, as I feel that it is not a healthy state of mind to have. However, sometimes when I’m pushed around town and have my oxygen tubes stuffed up my nose I can’t help but feel a bit down. Many people gawp and stare, sometimes out of pity with sorrow written on their faces, others are just curious or even nosey. It’s a million miles from where I used to be and it’s difficult to get used to. I often feel robbed of an identity as a woman and a wife, when I have to rely on people to help with things that I should be doing myself. I miss holding my husband’s hand whilst we walk around our town centre. Often, when out with Mum I get mistaken for a child (I have always been young looking, which I may be thankful for in years to come!) and this really upsets me. I simply crave normality. Nevertheless, I must push forward and have faith that this is a temporary period. One day I will get my transplant and will be running about doing a million and one things again and I will be able to vacuum as much as I like! So for now, I will make the most of ‘wheelie chair’ and wear the most ridiculous heels as I can find without having to worry about walking in them!