Yesterday I finally plucked up courage and unblocked the sink in the bathroom. The years of accumulated hair, soap and gunk was quite disgusting, but the satisfaction of seeing water flowing freely down the plug-hole is immense.
The sink seems to me a good metaphor for both the state of my Crohn’s and how I’m feeling being in France at the moment.
Firstly, my bowel is still taking some time to get back on an even keel after last week’s pain and vomiting. I know I have a couple of places of narrowing in my small intestine and, unless I eat a very low-residue diet, I get pain when food passes through.
There is no sink-unblocking solution to this problem. If there is food ‘backed-up’ behind the narrowing, it is a case of eating very carefully, drinking plenty of fluids and waiting. And trying to make sure it doesn’t happen again.
Ultimately I will need more surgery – but not yet.
Secondly, after being poorly with one thing or another since the end of last summer, I am feeling quite annoyed with life and that I’m missing out on the whole living in France experience.
This frustration is filling me up and stressing me out.
One thing I have to keep reminding myself that I still have five and a half months here. Another thing to remember is that this has been a fairly typical autumn and winter for me.
I generally get on with life and cope with long periods of inactivity without always becoming consumed with frustration, anger or depression. I have become very skilled at grasping opportunities when they arise and managing my expectations.
I get a lot done for someone who doesn’t do very much.
This chance to live in France for a year has been an amazing opportunity – and one I would recommend to anybody. But living abroad is challenging and does knock you off balance at times.
The problem for me at the moment is that I am beginning to see this opportunity through the eyes of someone who does not have a serious long-term health problem and who does not normally spend most of the year tucked-up at home.
Perhaps the gunk that needs cleaning out is the gunk of unrealistic expectations rather than the gunk of my illness (apologies for stretching the metaphor a bit too far).
Because, ultimately, I will get the most out of this five and a half months if I am focused on and excited by what I can do, not overwhelmed by the frustration of what I cannot do.
Saturday, 28 February 2009
Monday, 23 February 2009
Message received
I’ve been in France since last July and had by second attack of severe pain and vomiting on Friday. So that’s two attacks in nearly eight months, which really isn’t bad for me.
It is important to look at it like that, because going through an acute episode of my Crohn’s and the few days afterwards is rather unpleasant and dispiriting.
The attack I had in October which lead to me being on steroids was far worse. I think this time it was more of my bowel giving me a ‘final warning’.
I have to remind myself that my Crohn’s has come to live in France with me – and that it is still a big problem in my life.
This time last year, my doctors were encouraging me to have more surgery on my bowel to remove some scar tissue that was causing narrowing in two sections of the small intestine.
If the appointment with the surgeon had come through earlier (it took nearly six months for an ‘urgent’ appointment) I would have had the surgery before I came here.
As it was, I decided that it was more important for me to join my partner on this adventure and my healthcare team in the UK were very happy to support me in these plans.
My généraliste, gastroenterologist and hospital doctors here in Caen are all aware of how dodgy my Crohn’s can be, but are very keen for me to avoid surgery if at all possible.
I will go and see a doctor this week, but ultimately it is up to me to rest my bowel and go easy on all the great food there is here. It is not impossible to eat a tasty low-residue diet with all the cheese and cream produced locally.
I know what leads to these attacks – not being strict enough with my diet, getting stressed, not sleeping enough, not resting enough and getting exhausted.
Ultimately I need to listen to what my body is saying to me – and on Friday it sent me a very clear message!
It is important to look at it like that, because going through an acute episode of my Crohn’s and the few days afterwards is rather unpleasant and dispiriting.
The attack I had in October which lead to me being on steroids was far worse. I think this time it was more of my bowel giving me a ‘final warning’.
I have to remind myself that my Crohn’s has come to live in France with me – and that it is still a big problem in my life.
This time last year, my doctors were encouraging me to have more surgery on my bowel to remove some scar tissue that was causing narrowing in two sections of the small intestine.
If the appointment with the surgeon had come through earlier (it took nearly six months for an ‘urgent’ appointment) I would have had the surgery before I came here.
As it was, I decided that it was more important for me to join my partner on this adventure and my healthcare team in the UK were very happy to support me in these plans.
My généraliste, gastroenterologist and hospital doctors here in Caen are all aware of how dodgy my Crohn’s can be, but are very keen for me to avoid surgery if at all possible.
I will go and see a doctor this week, but ultimately it is up to me to rest my bowel and go easy on all the great food there is here. It is not impossible to eat a tasty low-residue diet with all the cheese and cream produced locally.
I know what leads to these attacks – not being strict enough with my diet, getting stressed, not sleeping enough, not resting enough and getting exhausted.
Ultimately I need to listen to what my body is saying to me – and on Friday it sent me a very clear message!
Friday, 20 February 2009
Be valiant!
With the days getting longer and the temperatures getting warmer I’m beginning to rouse from my winter hibernation.
Recently, I had nearly a week without a cold draining the energy out of me. Unfortunately, I seem to have picked up another one – but the momentum is there.
We now have six months to go of our adventure. We have negotiated a departure date with our landlady for the middle of August, so this week has been a good time to focus on what I want to achieve before I head back to the UK.
The first goal has to be putting in six months work on my French skills. Although I have continued to watch French TV, read French newspapers and speak to friends and to people in shops and restaurants, I had given up a systematic learning process.
Now I am spending a couple of hours a day studying to improve my vocabulary. One of my teachers is Michel Vaillant – a cartoon (or bande dessinée) character who I like. I read the books with a dictionary and learn loads.
The surname Vaillant means brave, courageous or valiant. There is a great phrase in French – je ne me sens pas très vaillant – which means “I don’t feel too good”. However, the literal “I don’t feel very courageous today” is a wonderful phrase for people with long-term health conditions where feeling brave is a pre-requisite for facing the day.
The other goal of being in France for a year was to look back at life in the UK (and the last ten years of being ill) with a bit of distance and perspective and start thinking of some of the things I want to do when I get back in August.
I am slowly doing this – without having any ‘eureka!’ moments – and the list is growing. The key, I guess, is to recognise that my health does prevent me from doing some things and forces me to do other things in different ways to most people.
Yet, this year proves that most things are possible if I apply my mind to careful planning, work out solutions to potential problems and, of course, be valiant.
Recently, I had nearly a week without a cold draining the energy out of me. Unfortunately, I seem to have picked up another one – but the momentum is there.
We now have six months to go of our adventure. We have negotiated a departure date with our landlady for the middle of August, so this week has been a good time to focus on what I want to achieve before I head back to the UK.
The first goal has to be putting in six months work on my French skills. Although I have continued to watch French TV, read French newspapers and speak to friends and to people in shops and restaurants, I had given up a systematic learning process.
Now I am spending a couple of hours a day studying to improve my vocabulary. One of my teachers is Michel Vaillant – a cartoon (or bande dessinée) character who I like. I read the books with a dictionary and learn loads.
The surname Vaillant means brave, courageous or valiant. There is a great phrase in French – je ne me sens pas très vaillant – which means “I don’t feel too good”. However, the literal “I don’t feel very courageous today” is a wonderful phrase for people with long-term health conditions where feeling brave is a pre-requisite for facing the day.
The other goal of being in France for a year was to look back at life in the UK (and the last ten years of being ill) with a bit of distance and perspective and start thinking of some of the things I want to do when I get back in August.
I am slowly doing this – without having any ‘eureka!’ moments – and the list is growing. The key, I guess, is to recognise that my health does prevent me from doing some things and forces me to do other things in different ways to most people.
Yet, this year proves that most things are possible if I apply my mind to careful planning, work out solutions to potential problems and, of course, be valiant.
Friday, 30 January 2009
Grève Général
Yesterday was another Remicade® day. Except it was no ordinary day – there was a grève général (general strike) in France with millions of workers in the public sector and some private companies stopping work to demand that ordinary people are protected from the economic crisis, not just bankers.
Around the country perhaps three million people marched, including 40,000 people in Caen (with a population half that of Brighton & Hove) and there were still people starting the march in Paris at 6.30pm, six hours after those at the front of the march had moved off.
It was quite a day, but would my infusion be taking place and, if so, how would I get to the university hospital for 8.30 in the morning?
I’d heard nothing from the hospital and there was nothing on their website about cancelling appointments, so I decided to go and see. I checked the web site for the local public transport and there were some trams and buses first thing in the morning, then nothing during the lunchtime and only a very skeleton service in the late afternoon.
I expected the trams to be packed, so I left home at 7am. When I got to the tram stop there was no-one there, but a tram was due in a couple of minutes. There were less than a dozen people on the tram (usually they are packed at this time) and I was at the hospital well before 7.30am.
After reading my book for a while, I went up to the gastroenterology unit and was shown to a side ward – no single room for me this time.
It turned out that the unions had negotiated a reduction in staffing to have a minimal impact on care, but allowing staff to join the strike. The shift times were also changed so all the afternoon staff could attend the lunchtime march and rally in the town centre and then come into work for their shifts.
What that meant for me was a more sociable day than usual, having some good chats to my room-mate who seem to find me and my appalling French most amusing. It also meant that lunch was a cold meal – but it was very tasty, as usual.
Otherwise my treatment was as perfect as ever. In fact, my Remicade® started earlier than usual and I was on my way home (on an empty bus) by 4pm.
I have to say, I was disappointed to have missed the huge march through Caen – the pictures in the newspaper today and the footage on local TV last night were glorious. However, it will always be amusing to remember I spent a general strike day as a patient in hospital.
Around the country perhaps three million people marched, including 40,000 people in Caen (with a population half that of Brighton & Hove) and there were still people starting the march in Paris at 6.30pm, six hours after those at the front of the march had moved off.
It was quite a day, but would my infusion be taking place and, if so, how would I get to the university hospital for 8.30 in the morning?
I’d heard nothing from the hospital and there was nothing on their website about cancelling appointments, so I decided to go and see. I checked the web site for the local public transport and there were some trams and buses first thing in the morning, then nothing during the lunchtime and only a very skeleton service in the late afternoon.
I expected the trams to be packed, so I left home at 7am. When I got to the tram stop there was no-one there, but a tram was due in a couple of minutes. There were less than a dozen people on the tram (usually they are packed at this time) and I was at the hospital well before 7.30am.
After reading my book for a while, I went up to the gastroenterology unit and was shown to a side ward – no single room for me this time.
It turned out that the unions had negotiated a reduction in staffing to have a minimal impact on care, but allowing staff to join the strike. The shift times were also changed so all the afternoon staff could attend the lunchtime march and rally in the town centre and then come into work for their shifts.
What that meant for me was a more sociable day than usual, having some good chats to my room-mate who seem to find me and my appalling French most amusing. It also meant that lunch was a cold meal – but it was very tasty, as usual.
Otherwise my treatment was as perfect as ever. In fact, my Remicade® started earlier than usual and I was on my way home (on an empty bus) by 4pm.
I have to say, I was disappointed to have missed the huge march through Caen – the pictures in the newspaper today and the footage on local TV last night were glorious. However, it will always be amusing to remember I spent a general strike day as a patient in hospital.
Tuesday, 20 January 2009
La Maison des MICI
I was in Paris last week, dropping my mum at the Eurostar terminal, and had a couple of hours to kill. So I decided to visit the headquarters of the French Colitis and Crohn’s organisation.
The Association François Aupetit (named after its founder) has its “Maison des MICI” (literally: House of IBD) on the banks of the picturesque canal St Martin near the centre of Paris.
The building houses the association’s offices as well as a welcoming reception area and a meeting room and smaller seminar rooms upstairs.
The Maison des MICI was set up in September 2007 as a place where people with IBD could ‘drop-in’ and talk to volunteers one-to-one (it is near 4 major hospitals which have IBD centres) and to put on regular events, such as talks, workshops, massage sessions and young people’s social evenings.
I was really impressed by what was on offer for people with IBD in Paris and the surrounding departments. It is a unique facility, but one that other countries’ IBD organisations should seriously look at.
The association is currently carrying out a survey of what people with IBD in France have most problems with and are presenting the results to government ministers and policy makers at a public convention at the end of March.
Local meeting have brought up similar issues – problems getting diagnosed, issues around building a long-term working relationship with doctors, plus IBD getting in the way of work, studying and everyday life.
Unfortunately, apart from one of consultation meetings in Rouen, the local area group in Normandy is not very active at the moment – the old co-ordinator has moved to Paris – but I am hoping to meet some local people with IBD before I return to the UK in the summer.
The Association François Aupetit (named after its founder) has its “Maison des MICI” (literally: House of IBD) on the banks of the picturesque canal St Martin near the centre of Paris.
The building houses the association’s offices as well as a welcoming reception area and a meeting room and smaller seminar rooms upstairs.
The Maison des MICI was set up in September 2007 as a place where people with IBD could ‘drop-in’ and talk to volunteers one-to-one (it is near 4 major hospitals which have IBD centres) and to put on regular events, such as talks, workshops, massage sessions and young people’s social evenings.
I was really impressed by what was on offer for people with IBD in Paris and the surrounding departments. It is a unique facility, but one that other countries’ IBD organisations should seriously look at.
The association is currently carrying out a survey of what people with IBD in France have most problems with and are presenting the results to government ministers and policy makers at a public convention at the end of March.
Local meeting have brought up similar issues – problems getting diagnosed, issues around building a long-term working relationship with doctors, plus IBD getting in the way of work, studying and everyday life.
Unfortunately, apart from one of consultation meetings in Rouen, the local area group in Normandy is not very active at the moment – the old co-ordinator has moved to Paris – but I am hoping to meet some local people with IBD before I return to the UK in the summer.
Friday, 16 January 2009
In hibernation
The winter is really gripping France at the moment with sub-zero temperatures everywhere, even in Corsica. Most of northern France is covered in snow and storms are being predicted.
Yet the weather in Caen remains unique. I think I’ve written how we’ve seen rain, sun and wind most days since we’ve been here, but even now the weather is different – no snow, temperatures about six degrees above Paris and plenty of sunshine.
It’s still cold, and we really notice it as the heating in our building is playing-up. The boiler is underneath our ground-floor flat and the warmth from that is usually enough to keep us warm.
When we wake up and the radiators are cold and the boiler is quiet we phone the heating company’s emergency line and an engineer is out within a couple of hours. After sounds of metal being thumped and French swear words the heating is back on – at least for a few hours.
Winter is not a great time for me. With all the immuno-suppressive drugs that I take, I pick up colds and viruses very easily. Usually a ‘flu jab keeps anything nasty away and – so far – my French ‘flu jab has done the job.
But I am suffering with cold after cold, feeling exhausted and miserable. I’ve lost my appetite for learning French and the other projects I have to keep me occupied. So I tuck myself up with a good book (in English) or play computer games. wait for the weather to change and emerge from my hibernation.
Yet the weather in Caen remains unique. I think I’ve written how we’ve seen rain, sun and wind most days since we’ve been here, but even now the weather is different – no snow, temperatures about six degrees above Paris and plenty of sunshine.
It’s still cold, and we really notice it as the heating in our building is playing-up. The boiler is underneath our ground-floor flat and the warmth from that is usually enough to keep us warm.
When we wake up and the radiators are cold and the boiler is quiet we phone the heating company’s emergency line and an engineer is out within a couple of hours. After sounds of metal being thumped and French swear words the heating is back on – at least for a few hours.
Winter is not a great time for me. With all the immuno-suppressive drugs that I take, I pick up colds and viruses very easily. Usually a ‘flu jab keeps anything nasty away and – so far – my French ‘flu jab has done the job.
But I am suffering with cold after cold, feeling exhausted and miserable. I’ve lost my appetite for learning French and the other projects I have to keep me occupied. So I tuck myself up with a good book (in English) or play computer games. wait for the weather to change and emerge from my hibernation.
Tuesday, 13 January 2009
January visits
My mother is visiting us at the moment, staying at the hotel at the end of our road and spending most of the day with us.
Mostly, we are carrying on as usual, with my partner studying at home and at university (she has exams coming up soon). We’ve been to the January sales, had a couple of nice lunches and been to the Friday and Sunday markets. However, we have done a few touristy things as well.
Bayeux is a very different place in January that when we visited last September. Instead of being packed with tourists, we had the town to ourselves. The staff in the Tourist Information we delighted to have tourists to talk to!
My mum really enjoyed having a look round some of the old medieval parts of town and loved the cathedral, even if it was no warmer inside than outside in the icy wind.
The highlight was our visit to the Bayeux Tapestry – something my mother has always wanted to visit. In the summer there were nearly a hundred people looking at the 230 foot-long tapestry. In January it was just me and my mum.
It was a real privilege to have an entire UNESCO world heritage site for our own private viewing.
We really enjoy having visitors. It is, of course, a reminder of our life in the UK, but it is a nice way to share our new life in France and is an opportunity for us to reflect on what we do and what we’ve learned.
My mum will get to meet some real French people when she and my partner go to a French ladies’ English cooking afternoon. I know my mum is a bit nervous as she doesn’t speak any French, but it will be an experience that other English tourists would not normally have.
Mostly, we are carrying on as usual, with my partner studying at home and at university (she has exams coming up soon). We’ve been to the January sales, had a couple of nice lunches and been to the Friday and Sunday markets. However, we have done a few touristy things as well.
Bayeux is a very different place in January that when we visited last September. Instead of being packed with tourists, we had the town to ourselves. The staff in the Tourist Information we delighted to have tourists to talk to!
My mum really enjoyed having a look round some of the old medieval parts of town and loved the cathedral, even if it was no warmer inside than outside in the icy wind.
The highlight was our visit to the Bayeux Tapestry – something my mother has always wanted to visit. In the summer there were nearly a hundred people looking at the 230 foot-long tapestry. In January it was just me and my mum.
It was a real privilege to have an entire UNESCO world heritage site for our own private viewing.
We really enjoy having visitors. It is, of course, a reminder of our life in the UK, but it is a nice way to share our new life in France and is an opportunity for us to reflect on what we do and what we’ve learned.
My mum will get to meet some real French people when she and my partner go to a French ladies’ English cooking afternoon. I know my mum is a bit nervous as she doesn’t speak any French, but it will be an experience that other English tourists would not normally have.
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