France Part 1

So much to say, so I’ll start with facts.

Richard and I, along with 7 of our friends, spent a week in Chamonix, over New Year.

We stayed in a 1st floor flat, along with another couple, and the others stayed in the same building, but 2 floors above us.

I gained a huge amount of experience and confidence from this trip – our first holiday outside the UK in the almost 3 years that I’ve had a feeding jejunostomy and Hickman line. Logistically, that meant a LOT of stuff had to come with us; not just the supplies that I use routinely, but also the things that I would need if things went wrong. I spent a lot of time thinking about what could go wrong, and how I would handle each potential problem. While packing, I decided that I would plan for the more probable problems and leave the rest to chance. This sounds reckless, perhaps, but it’s how most people plan their lives.

My probable problems:
– infection
– asthma flare-up
– minor problems with feeding tube or Hickman line (blockage, leaking, minor infection)
– damage to supplies in transit, including electric wheelchair

I really, really wanted to avoid a trip to the local mountain hospital (or even a longer trip to one of the large hospitals in Geneva). I didn’t want to spoil my holiday (or anyone else’s) and would have questioned the sense of future holidays if I’d ended up in hospital, or put my health at risk in order to avoid a hospital admission. I was also extremely conscious that this wasn’t just my holiday, or husband’s.

My health really does dictate almost every moment of every day, but I didn’t want to make other people uncomfortable, make them change their plans significantly in order to accommodate me, or put a dampener on the mood of the group.

In general, I think things went pretty well. There was an early incident, when our hire car got stuck in the snow. On the driveway of our apartment block, of all places! We almost had a collision with a snow plough, as we were trying to get off the road, which was unexpected. Of course, everything was fine, and our friend came and helped us dig some of the snow away from the wheels, so that we could drive the couple of metres onto the heated drive. Picture this: Friend digging at the snow with a paint tray, at 1 am, a French snowplough driver shouting about snow tyres, and our car resolutely spinning its wheels. Much funnier in retrospect!

We didn’t get to bed until 4 am, by the time we had done the necessary medical stuff. That is past my bedtime by a considerable amount.

I developed an infection later in the week, for which I was well prepared. It felt good to be able to do all the right things without having to go to hospital.

The final problem was the flight home: we had booked flights back to City airport, which is an easy taxi ride from home, but hadn’t realised that the plane would be smaller. It was absolutely full, and there was a bit of a kerfuffle trying to find space for the wheelchair.

Apart from those fairly minor incidents, it was a wonderful holiday, and I look forward to more adventures in the not-too-distant future.

There are several things that I would do differently next time, and some that I want to remember, as they made life so much easier. I’ll post them on here at some point, more as a reminder for myself than anything else, but they may be useful for others.

Until next time…




Whistle While You Work (or The Benefits of Cheerfulness)

I really want to tell you all about my trip to France over New Year. I wanted to write all about it before I left (especially to show you the difference between my medication suitcase and my ‘everything else’ suitcase) but decided it would be unwise to advertise my empty home in advance.

There are some things that we got absolutely right, some lessons that I learnt, and some things that I’d do differently next time.

Save yourself for those upcoming posts!

For now, I’ve just been reading a blog that I love (Love, Joy, Feminism over at Patheos Atheism) and really wanted to share my own experience. Libby Anne was brought up in a large family, was homeschooled, and was taught to be conservative/fundamentalist Christian, with all the baggage that goes along with such things. My upbringing was less extreme, but I still find that Libby Anne and I have much in common. I have spoken to some of you, my trusted friends, about the changes in my religious beliefs, and the reasons for them, but have generally not trumpeted my internal debates.

One of the things that seems to attract attention and comments, as I make my way through life, is that I maintain a generally cheerful outlook, even in pretty horrible situations. Part of that is due to my natural pragmatic optimism, but this was certainly encouraged at home, at church and at the ‘homeschool’ where I spent the last two years of my primary education. I was taught to believe that I should be joyful in all things, and that one of the ‘fruits of the Holy Spirit’ is joy. If I had the Holy Spirit dwelling in me (as was taught and encouraged), this would be evident from my demeanour; I would display supernatural Love, Joy, Peace, Patience, etc.

In many churches, joy is distinct from happiness or cheerfulness, and I was taught that joy is not an emotional response, but a spiritual gift. Christians are expected to be joyful simply because they are Christian. I was taught that my response in all situations was to praise God (yes, really) and that I should look to God to give me joy under all circumstances.

If I didn’t feel joyful, or remotely thankful, my general tactic was “fake it until you make it.” I would smile and think of positive things. It’s possible to find them, even in the darkest of situations. One problem with this supernatural joy was that I had no outlet for the grief that I felt about my physical condition. I have had so many brushes with almost-death, serious illness and disability, over the last 30-odd years, and each time I was expected to take all my problems (still praising) to God. If I outwardly expressed grief, shame, or anger, it was seen as evidence that my faith was weak. Almost a sign of failure. Not only was my body failing, but if I expressed anything other than joy, my spirit/character was failing. This was the only thing over which I had any control, so I did my best not to fail.

Additionally, my physical illness was seen as a sign that all was not well in the spiritual realm. I have been told that my condition is because of my sin, my lack of faith, because I don’t pray hard enough. I have also heard that god is testing me, that he has great plans for me, that he never gives us more than we can handle.

I no longer describe myself as Christian, which has been a great relief in so many ways. I no longer feel judged for my body’s failings, or for my response. I feel that I am allowed to feel what I feel, whatever that may be.

I’m grateful that all my emotions are validated, and that I no longer have to cover up my ‘negative’ emotions. And yet I still enjoy finding the best in most situations, looking for laughter and fun despite everything. There are times when that’s impossible, which is ok, but endless negativity takes its toll, on me and on those around me. I value my close friends, and am so, so grateful for all that you do for me and Husband. Because I value you, I sometimes choose to censor my negativity, because I don’t expect you to have unlimited strength to deal with my sadness. An hour away from the harsh realities of my medical world can sometimes give me the perspective that I need, or the strength to continue smiling even when things are hard.

I no longer feel that I’m being untrue to myself as I express my emotions, and I no longer feel that my spiritual state is under constant scrutiny. But I am an adult, and am responsible for how I choose to express my feelings. What I say, and how I say it has an effect on how I feel, as well as having an effect on my friends and family. If I spend all my time complaining about how much I hate my feeding tube, for example, it makes it much harder to spend 20 hours per day with a pump and bag of nutrition connected to it. While I try to acknowledge and validate my feelings, I still have the power and responsibility to choose how I use my time, my words and my thoughts. Giving time to the things that make me feel happy and positive is good for everyone, and pretending can go a long way towards making something less difficult.

Thank you for not judging me, whether I choose to ignore the bad things, or sob on your shoulder about them. Thank you for sharing your strength and energy with me. Thank you most of all for being there – on the other side of the Interwebs, on the phone, or in person.


What Not to Say to Someone with a Disability: A Suggestion

*** Not a Rant ***

I didn’t intend to write about words today, but I spotted a word that bothered me, so I thought I’d share it with you.

Most of the time I try to maintain a positive attitude about my life, my body, my future. I have so many good things (and good people) in my life, which really do outweigh the negatives most of the time. So I find it hard when people describe my body or my life with words such as:


Today’s example comes from a website that sells products for people with disabilities:

The transmitter button can be operated by people with limited dexterity, Arthritis victims etc. Powered by 1 x A23 battery. Transmitter range 120M.

So, just FYI, I’m not a victim.