Squirrels and doctors

Yesterday I had my first contact with the French Health System; except I am not fully registered yet so I am still learning! I was amazed to have a whole half an hour with my GP; who took one look at the referral letter from my GP in the UK and panicked! I now have referrals here, there and everywhere for permission to have my medication prescribed, for blood tests, and for appointments with a specialist in April! How quickly things move and how great that the GP can organise it all from his office! No waiting, no letters but as I have no inusurance yet, quite a heafty bill for me at first! Unlike in the UK, healthcare is not free at the point of delivery.

Ian opened the bonnet of the Ford Focus to put some windscreen washer fluid in before I left, only to find 24 neatly stored acorns, squashed in the sound proofing of the bonnet. It looks like a squirrel saw it as a nice nesting box and as here they are not the aggressive grey variety but the rather timid red squirrels, we were sad about disrupting it. (However, squirrel barbequed on the engine block would not be a good idea!). Ian now has instructions for a squirrel house!

What is worse, the illness or the cure?

Things down here on the coast are always a little behind the rest of the UK so we have only just got our first batch of swine flu vaccine. This pleased me a little as by the time my letter arrived inviting me for my jab enough people had been given it to satisfy me that there were not likely to be any serious reactions to it! I debated whether to have it and decided that although I don't believe swine flu would be that harmful to me I could do without being ill for two weeks. So, Saturday morning I got my jab and by Saturday night my arm ached and I felt as sick as a dog! Sunday was a bit better but by evening I had a fever again and today I just feel a bit worse for wear! The annoying thing is I have to go through it all again in January as according to those that know I need two jabs to get enough immunity!

The T Shirt that got away

Finally the grey clouds lifted today and the sun came out. This meant it was much colder but a sacrifice worth paying to get away from the greyness. It also seemed to cheer everyone up and the atmosphere at work was much better. People have been saying that I look quite well at the moment and now I have recovered from the cold I have had I do feel quite good. This is probably due to the fact that my medication was increased three months ago! I saw an advert for a great T shirt on the Random Acts Blog. Unfortunately I missed the last chance to order one as I think it is great and sums up all I feel about my illness. I never suspected for a moment that my aches and pains and tiredness would ever become anything more serious but when it did I was bl**dy glad to be living in a country with a good health service!

More b*ll*cks about Lupus

Related to my post yesterday, there is now talk that Michael Jackson had lupus. Actually this isn't so far fetched and could go some way to explaining his wearing of the glove to cover his hand, his occasional wheelchair use, the umbrella to keep off the sun and maybe even his dependence on pain killers, if that proves to be the case. Initially I felt a little disappointed that he had not been open about this during his life but then when I read this quote from his 'friend', Dr Deepak Chopra

"if children have experienced either physical or verbal, mental, emotional or sexual abuse, then 20,30 years later they can develop these autoimmune disorders such as lupus"

..I was more sympathetic. No wonder he never felt able to be honest about it if this was the kind of cr*p he was being told! There is a link between symptoms and stress, as stress affects the immune system, but this is far from straightforward. Of course there is no reason why people who have been abused shouldn't get lupus but as far as I can see there is no reliable evidence that suggests that they are more vulnerable to it! I have never been abused and I don't drink diet coke but I still have an auto-immune disease.

Seeing red

Chairman Bill has been blogging recently about conspiracy theories, medical quackery and pseudo science. It reminded me of a post I read the other day on a forum that is designed to give information to residents and guests staying in the region around the land. This post appeared under the title 'Food and Wine' and was a tirade against the artificial sweetener aspartame, copied by all accounts from an American website. The title of the post was 'sweet poison' and basically went on to blame every medical complaint known to man on the use of this particular substance. I found most of it vaguely amusing until I got to this part.

"In the keynote address by the EPA, it was announced that in the United States in 2001 there is an epidemic of multiple sclerosis and systemic lupus. It was difficult to determine exactly what toxin was causing this to be rampant. I stood up and said that I was there to lecture on exactly that subject. I will explain why Aspartame is so dangerous: When the temperature of this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis.. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and systemic lupus. Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers.

The victim usually does not know that the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a life-threatening condition. We have seen patients with systemic lupus become asymptotic, once taken off diet sodas."

Well, as one of the writer's so called 'victims' of a disease very similar to lupus I can say that it is this kind of unhelpful b*llocks that really p*sses off people with lupus and other auto-immune diseases. Auto-immune diseases are not caused by a toxin but by the body's immune system malfunctioning and starting to attack and destroy healthy cells. The exact mechanisms are still a little unknown but there is definitely a genetic component. And.. yes.. there are more people being diagnosed with all these diseases but this is not due to artificial sweetener but to the fact that more doctors know about auto-immune diseases and diagnosis is easier (and there are many more treatments available). My grandmother (who lived until she was 98) would get a rash on her face in the sun. This was almost certainly lupus but when she was young no one knew what it was and so she was never diagnosed. My own illness was only identified in 1976 so before then the numbers of cases were obviously limited.

Auto-immune disorders are characterised by flares and remissions and so if anyone did feel 'cured' after stopping the diet coke then I would guess that it was most likely due to a natural remission or placebo!

I can only hope that no one with lupus is stupid enough to believe that cr*p and stop their medication in order to try the aspartame free cure! If it was really that easy to cure lupus don't you think we would all have done it by now!

I would like to conclude my moan by saying that personally, I have never really seen the point of artificial sweeteners myself and never drink coke or fizzy drinks unless they contain alcohol (now there is a proven poison!)

On a totally different note, Ian got an email from his agency today telling him that it was company policy that if he became ill with swine flu he must stay off work until he is better. Now as the only way you can be sure that you have swine flu and not the more common illness of man flu, is to have a blood test, and these are not being carried out routinely this seems to be an order that is impossible to enforce! (Of course man-flu would require a week off work anyway!)

Unfit

We really haven't been doing much cycling this year as we have had to concentrate on the house most weekends. In fact, until yesterday I hadn't ridden my mountain bike for a year or so. We had planned to ride at the weekend, initially on the road with some of Ian's friends, but they had dropped out. Ian would have been happy not to have cycled but I insisted so to make me suffer he suggested a mountain bike ride! All the routes from my house involve going uphill rather suddenly. I picked what I thought was the easiest one but even so I had to stop twice going up the 12% hill to get my breath back! I am not very fit at the moment! Once at the top and after my heart rate had calmed down I really enjoyed being outside although I think need to get fitter so that it doesn't hurt so much! I guess it didn't help that it was the hottest day of the year so far! We cycled out to Birling Gap, which was packed with visitors.

I was exhausted and Ian was a bit bored since he can cycle so much faster than me. We passed on tea and ice cream (although I did take some photos) and headed home. I did not find the journey back quite so difficult and Ian had cheered up a bit! Despite being neat the sea the air was sultry and the sea calm but hazy.

I had a follow up appointment with the rheumatologist today. Despite my lack of fitness I am feeling quite well although he was concerned about the fact that my hands are rather puffy and seem to be getting quite tight. The decision was made to try increasing my medication and try to stretch them to keep them flexible. I also have to go and have another load of blood tests since one test I had a few months ago had a dodgy result. The trouble with having regular tests is that sooner or later one of them will be a bit strange and that triggers off a whole round of investigations which usually turn out negative. Well, I hope that is the case this time.

I can't wait for the day....

What defective evolutionary process was it that decided that it was a good idea for women to have to endure 40 years of fluctuating hormones, painful cramps, etc. and then, just when you see that misery coming to an end make you suffer from 'hot flushes' instead?

Here's how it goes.. wake up in the night sweating, pull off the duvet, freeze 5 minutes later, pull on the duvet, wake up sweating.. continue until morning.. Get up, have a hot flush just when you have finished drying yourself off after a shower and have to start again..have a hot flush after drinking a cup of tea, get into the car, have another hot flush driving to work, saying hello to boss, opening emails etc etc....

My periods have caused me nothing but trouble all my life. When all this is over I will be very happy! I will not have a crisis concerning my femininity, I will not grieve the passing of my youth but just be bl**dy glad I can live my life without being at the mercy of my hormones!

Building gates

The logistics of finishing off the house in France, commuting between our respective homes and moving tools and materials around the country can lead to some interesting dilemmas and challenges to our problem solving abilities (and not to mention long conversations that start "where did I leave my box of galvanised nails? In France, at your house or are they in the loft?"). Ian has been looking out for a trailer for the van and found one a few days ago that met all of his criteria. The only problem is, we have nowhere to keep it. So, a cunning plan was hatched that basically involves removing two panels of the fence at Ian's place and constructing a gate in its place. That way the trailer can be manoeuvred into what passes for his garden (a little patch of grass by the side of his flat). My task yesterday was to take a crow bar to the old fence and dismantle it..a job a quite enjoyed although Ian is cross that I did not carefully chop up all the bits of wood and put them in the bin! I should also add that my morning job involved assisting Ian to unload 36 sheets of plasterboard from the van to its temporary storage place in a neighbour's garage.

While we were outside another of Ian's neighbours, Patricia, came out. She is around my age and usually quite active but on this occasion looked like she could hardly move. Ian helped her to take out her lawn mower and she mentioned that she was having problems with her hands and feet. I asked her a little more and it seems that she most likely has rheumatoid arthritis and has been having problems since Christmas. She had started some treatment but so far was still in pain. When I told her that I had gone through something similar a few years ago she seemed genuinely relieved. "Oh, but you are able to do so much, you cycle everywhere". I told her what it had been like for a while, how at the time I wasn't sure if I would even be able to work, let alone cycle, how the first year or so is hard because it takes that long for them to work out how to treat you, medications take months to work, how it takes you a while to adapt and that for most people with the right treatment the future is okay.

I remembered having an email discussion with a fireman with MCTD when I was first ill. He told me that he had eventually made it back to work and achieved full fitness and it filled me with great hope so I hope I was able to give Patricia something positive to aim for. She seemed pleased and that afternoon she mowed her entire lawn (although it was obviously very painful for her). She said to me later "I just have to weather the storm for a while don't I?" I said "Yes, I think you do".

Now I have to make a trip to Screwfix for a box of galvanised nails!

All in a weeks work

This week I have been rather busy on visits to students and preparing for an even busier week next week, and at the same time, trying to fit in some routine hospital appointments. Wednesday was my day for my six monthly check up at the hospital. These are usually pretty quick affairs as fortunately I have continued to remain well. On Wednesday the clinic was busy and my consultant was wandering around. He bounced over...

"Hello, how are you? I haven't got anyone with me at the moment so I thought I'd come over and say hello. Would you mind seeing the registrar today? It would be good for her to see you I think?"

"I'm fine, and no, I don't mind"

"Are you still mountain biking?"

"Well, I haven't been so much lately but I did go skiing again"

"Oh really? Where did you go?"

(there then followed a brief conversation about ski resorts in France and the loads of snow this year).

I am happy to see the registrar. As Ian said "how many people with MCTD is she likely to see in her career?"

Well, I may well be the only one for a while, and if, in a few years time when she is sitting in her surgery someone comes in with a strange mixture of peculiar symptoms that she can't quite figure out maybe she will remember me.

Of course the downside of seeing the registrar is that because she is learning she is much more thorough and concerned that she doesn't miss anything. "Shall we do another lung function test?" I managed to convince her that as I sit next to the woman who carries out the lung function tests in my exercise class and my lungs don't feel any different to anyone else's in the class then there wasn't much need. She then looked through my old notes, started to panic at the list of things that were wrong and ordered a whole host of blood tests!

The queue in the phlebotomy unit was long.. I waited half an hour for them to take blood and then popped back to the clinic to check that the urine test was okay (I knew it would be as I test it myself once a month) and then I left just before they were about to put a ticket on my car for outstaying my welcome in the car park!

Understanding technology 2

My sister is a novice to the world of technology having spent most of her adult life teaching fitness. Recently she had to attend a remedial driving course (or pay a fine and have points on her license for doing 50 miles an hour in a 40 mile zone). This involved using a computer with a mouse and she said she ended up with her arm so far over to the right that she fell off the table!

However, times are changing and together with the Nintendo Wii-fit you can exercise from your laptop. You can check her out her on-line lessons here!

The mystery of the immune system

I am currently unwell. As my birthday is in November I am usually unwell on the day so it looks like this year will be no exception. However, one thing about having a b*ggered immune system is that coughs and colds etc don't seem the same anymore! It has taken me a while to work this out but the normal symptoms that we get with a cold are really due to the immune system doing its job of fighting off the virus. In my case my immune system doesn't really do this properly as I have to take medication to suppress it; so I don't really get the sore throat and runny nose bits of a cold. You may think that is great but at least those symptoms tell you there is something wrong! In my case I wake up and feel like I have been beaten up by a gang of thugs and can't work out why! Usually a few days rest does the trick but I have to notice that something is wrong and not do what I did last week and put it all down to my hormones and the weather. I am learning...

I find it quite weird to have a illness that no one really understands. In fact, the mysteries of the immune system are slowly being unravelled only to uncover more things that they don't understand; a bit like exploring deep space and coming across a black hole. No one can really explain why one day, out of the blue, my body decided to take up arms against itself and begin to attack my healthy cells. Treatments are being developed all the time and in a notorious case when healthy volunteers were injected with a new medication being trialed for rheumatoid arthritis they developed a severe and life threatening auto-immune response in a matter on minutes suggesting that the balance between an ordered and disordered immune system is incredibly delicate. Also of interest is that the more aggressive flu viruses that are likely to cause pandemics such as avian flu, are thought to over stimulate the immune system and produce a severe auto-immune response in healthy people. Strangely, if there were an outbreak I might fare better than someone with a better immune system!

For this reason I have been particularly interested in watching the TV series 'Survivors' on the BBC. In the story a worldwide flu pandemic kills 90% of the population and the story is of the 10% that survived. I remember watching the original in the 1970s and being particularly taken with the story and disappointed that it was never shown again. However I enjoyed the first episode of the remake and look forward to episode 2 tonight.

Time to go

While away I managed to cut big branches off a tree with a small pruning saw (for 2 hours), cycle for 3 hours at a time, lug Ian's tools back and forth around the land in 30 degrees Celsius, sleep on a bed like a bouncy castle, when I was sitting, sit in uncomfortable campsite chairs; and in three weeks I was not particularly bothered by my stiff hands and joints and muscles.

Why is it then that after being home a week, back at work for 4 days where I spend the majority of time seated at a desk that the joints of my feet, ankles, fingers and wrists are so sore that I struggle to get out of my nice comfortable bed in the morning and I can hardly pick up my tea cup? There is a message there somewhere and it isn't too difficult to work out!

Relief

My increased dose of tablets has finally started to work and for the first time in 2 months my hands don't hurt! Mixed feelings..glad it has worked but not glad that I will have to take tablets for ever!

On another note I found a fellow blogger today who also has mixed connective tissue disease and have added her blog to my blogroll.

Signs of ageing

I got a a letter the other day inviting me for my first mammogram. Now if Nessienora is reading this after her experience she will be encouraging me to go, and I will as I appreciate the value of free screening. Its just that I am not 50 until later on this year and somehow I was hoping I would have a gentle passage into the next decade and not have my age thrust into my face at the earliest opportunity!

They sent me an appointment for next week in the middle of Tuesday morning. Do they not think that people of 50 might be working and that it is quite difficult to arrange to have an hour or two out of the day with such short notice? The mobile screening unit is only in the area for two weeks and they had no other times on offer that I could make so I asked to re-arrange it for September.

"Well, we won't be in your area then..you'll have to travel"

"That's ok, its getting time off work that is more difficult. Do you do any evening sessions?"

"No, I'm sorry we don't. I'll cancel your appointment for you and you can phone us nearer the time."

I don't think they understand about forward planning!

Intolerable!

When I saw the rheumatologist last week I asked him if I should take some steroids to relieve the symptoms in my hands (just as a short-term measure). He said that I could if it 'becomes intolerable.' I contemplated what that might mean. I decided that it was intolerable if I couldn't ride my bike this weekend, (a group of us did a really nice ride in Kent) and so took a small dose of prednisolone (more than he suggested but not enormous!). My hands stopped hurting enough for me to spend 3 hours riding my bike so I figured that any potential damage from the steroids was more than mitigated by the benefits of the exercise. The challenge is going to be not to take them again tomorrow!

(The increased dose of immunosuppresants will take about 2 months to really work properly which is a long time to sit still!)

My mother's therapist

On the surface my mother comes across as an easy-going elderly woman who just wants to do all she can to please everyone, but underneath this she is a very determined and stubborn woman. I was discussing this with Ian tonight and he laughed and said 'just like her daughters'. I was having a conversation with her about her bed. She told me that her mattress wasn't comfortable and she wanted a new one; I tried to persuade her to have one of the electric beds that would help her sit up, but she had talked to a few other people that had them and decided she didn't want one as they took up too much room. 'Fine', I said. 'We'll just get you a nice new mattress that is more comfortable' (Ian later said 'is this the horrible old bed that we tried to persuade her to throw away when she moved but she insisted she bring because she really liked it!). She wanted me to bring a measure with me and when I asked why she said so that I could measure the height of her bed and see how much higher her new matress would be as then she could get up easier. Now, my whole professional life has been spent helping people to find ways to get out of bed so had she told me in the first place that she was having difficulties getting out of bed then I might have been able to come up with a number of solutions! However, I realised a while ago that I cannot be my mother's therapist! I took this opportunity to try to persuade her to see an occupational therapist (not me) privately and explained how it was very difficult for me to approach her and work with her in the way I would work with clients but what I could do was find her a good therapist. She would probably have to pay for it but then she has some money and it would be a good investment. 'But what could this person do for me that you can't?' she said. I explained again about how difficult it was for me to act as her therapist and she seemed to understand. 'But how do I know that this person will be able to help me?' she said. I said. ' Well, perhaps you can let me be the judge of that in this case.. it is what I have been doing for 35 years'! She laughed and I said I would talk to her about it next week! I don't think I have much chance of getting her to agree to a referral! My brother tried to arrange a doctors appointment for her but she refused, saying that she would do it herself! My sister-in-law wants her to have acupuncture but she has even less chance of persuading her to pay for someone to stick needles into her than I do of getting her to see a private therapist.

I think that when I am her age I will probably be exactly the same as her so I guess we must just learn to allow her to make her own decisions at this stage in her life, and accept them, even if they are not the ones that we want her to make.

(Funny, until I started writing this entry I could not see it so clearly)

Interview with butterflies

This relates to entry 2 days ago and is the interview on the BBC with Seana's family. It requires no further comment.

A reminder

I haven't written about my illness much apart from the occasional mention of blood tests, medication and my gratitude that I have been able to return to a full active life. The truth is that although it is always there it is fortunately no longer a big part of my life. However, over the weekend a couple of things happened to remind me of how ill I was and how lucky I have been!

On Friday I visited my GP as I wanted a referral to a specialist for something that has been bothering me for a while (and is unrelated to other illnesses). As he dictated the letter he read out my past medical history. It went something like "interstitial lung disease, disseminating intervascular coagulation, nephrotic syndrome, connective tissue disease, polymyositis...." After hearing this I said 'God, when the consultant reads that he will think I can barely walk.'.(and, I should have added..will probably say that I am imminently unsuitable for further treatment for my other complaint as that may bugger up his success rates). My GP then kindly reminded me that in fact when I was ill I was barely able to walk and he was just pleased to see that I was well and able to laugh at things now. Even now I can't really get my head around how ill I was so sometimes it is good to be reminded as I then treat life a little more preciously.

My second reminder came yesterday. Ian and I cycled into town to watch the London marathon (I was staying at his place). We had a special reason and that was to cheer on his colleague and 3 of her relatives who were running round in yellow with purple wings. They were running in memory of their daughter who died suddenly from Lupus at the age of 26 and were fund raising but also trying to raise awareness of the disease. I have posted about her before and how I was just luckier than her in that my GP did the right tests and eventually got me hospital. However, this was after I had paid for a private consultation with a rheumatologist as I was not convinced I would survive the 2 month wait to be seen!

Ian's colleagues were interviewed by the BBC and it was broadcast in the evening's edited highlights. The most poignant statement was when her father said how last year she had been handing out water at one of the refreshment stations and this year she was dead. He has written a narrative of the event.