KEEPING SANE ALONG THE SEINE

The Louvre was free for me and John as were all other museums / galleries. Wheelchair users and one carer are not charged.

The Louvre was crowded. We only did the top floor as I really could not cope with more. It seems I can only take in so much before being overcome. My brain just starts to shut down on me and I become disassociated.

At least I know why Mona Lisa has that smirk on her face. She is thinking 'Look at all these twats trying to perv at me'!! The crowd around her was enormous. The guides tho told John and I to go in front of the barrier. There is a separate roped off area for wheelchair users right at the front. (The Scottish National Gallery were not so thoughtful.)



We were allowed to photograph too. Many of the exhibits were in glassed frames, thus the flare, even without the flash.

Most of the photographs I took, and most of the paintings I liked, were portraits of one person. I find the other paintings to be dull even though I am impressed by the blue used in many. (I much preferred the other gallery we went to but more of that in another post.)

I booked our trip six months prior to taking it. I telephoned the Novotel Tour Eiffel and spoke with the reception there. They gave me all the details I needed about how to get around Paris. I was told, correctly, that we could book special taxis that would take me sitting in

my wh/chair, that we could use buses that had special platforms and that all the places we would want to see were fully accessible. They neglected to tell me that the hotel itself was not accessible! The first thing you see when you go in, up a wheelchair ramp, is a pair of escalators! The reception being on the second floor. The only way for wheelchair users to get in and out is to wait for the hotel firemen (don't ask me why firemen) to take one up in the service lift at the BACK of the hotel.

Our room was supposed to be a suite. It wasn't. It was a bedroom with a small, hardly accessible room attached. This room was by the entrance so the first thing John had to do was move the sofa so I could get in. We then discovered there was no fridge , just an empty spot where it clearly had been. The supports in the disabled loo were also broken(downstairs, not in our room-there were none in our room!)

I did not complain until the morning of checking out because I did not want my stay ruined. As it was, I was correct to not do so because the manager clearly thought that the firemen deal was a good one and meant the hotel was accessible! She did not understand at all why I was unhappy and said others had not complained. We know for a fact that the other two wheelchair users we met also complained. I did get the parking charges, £125 worth, waived BUT the parking for disabled ought to be free anyhow as we have no choice but arrive by car. It is free in other places. I am still going to write to the ACCOR hotels head office though. We use this chain all of the time and the last time I wrote to them I was listened to and refunded the cost of the stay. I do not expect that but they need to do something about this hotel. Either build a lift in the lobby OR tell people it is not truly accessible.

The last night we were there we ate in the hotel restaurant. The food was good BUT the service was horrendous. The waiter didn't understand us. This is a 4 star International hotel. My steak arrived 30 minutes before my salad and vegetables. This despite me calling the manager. Our litre of sparkling water was only 50cl! It was a disaster.

I did not allow the hotel to ruin our stay at all. I loved Paris. It is not new to John, he has been many times, but it was new to me as although we had been in 2003, it was during the heatwave which had killed thousands that year. We spent most of our time in an air-con cinema watching Bruce Almighty! I was also ill but undiagnosed and not using any walking aids at all, so collapsing frequently and not knowing why. We were on a two week driving holiday around France and were staying in Orlean, from where we got a train to Paris.

We met so many kind and friendly people. From other tourists to shop staff. I wonder if shop staff, or those who look down upon them, realise what a difference they can make to strangers just by their attitude? The staff we came across treated us really well and were talkative and helpful. They appeared to go out of their way to be helpful and friendly. Unlike here in the UK I'm afraid to say. This really added to the enjoyment of my stay there.

This was the first really tourist destination I have ever been to and it was very crowded which I did not like. There were the usual ignorant arseholes who walked into me or stepped over me. The amount of people who would see me coming but did not take evasive action until they were almost on top of me and then walked across me, just missing my feet. This is SO exasperating and I hate having my space invaded like that. However, I did keep my cool and my sanity.

Everywhere we ate people were kind and helpful. Food was always good. Coffee can be very hit and miss in France but I finally figured out how to get what I want. Double espresso with hot milk on the side. This way I get a coffee with milk and not a milk with coffee!

No matter how much drug I take, I get ratty. Poor John bears the brunt of that. I get so frustrated and I feel guilty that he has to help me all the time. Feeling guilty can make me lash out and I lash out at him who I am feeling guilty about because he has to help me all the time! I only realised this on this trip. I HATE it. Yet I know that he enjoys helping me. I don't mean he is glad he has to. I just mean it makes him feel useful. He is very good at it too though sometimes I wish he were not so helpful and I end up yelling at him ' I am not a f*cking invalid, you know!'. I must be a right pain!

On Wednesday, I did a lot of walking. One stick and using my other arm to hold onto John's arm. We walked very slowly, he pushing Big Daniel with the shopping bags on the seat. I was okay that night. The next day I was tired, worse on the drive home on Friday and yesterday was terrible. Today I still feel sore and exhausted. So I guess even if I think I can do it, I ought not to. What do you want to bet I will not heed this lesson? Despite the cost, I really enjoyed walking along Paris streets, linked arms with John, and just being on my feet even if they did crunch with every step. Of the whole trip, I recall that the best. It was lovely.

The weather was dry and warm. High 70's mostly, Wednesday being in the 80's I think. My hands are tanned and they have tan lines from my wrist supports!

There are more photographs to come but this is it for now.

ROCK BOTTOM

I am one of these people that really will not give in until I hit rock bottom.Thus I suffered a great deal of physical pain for a number of years before I even broached the subject with my Doctor.  I took no steps to ease it.  This culminated in me being stranded in Stockholm Sweden in so much pain that I was barely able to move and John had to fly out to rescue me.

Since then I have used walking sticks to walk.  I persevered with that until I gave in yet again and got a wheelchair because I realised that my life had become very limited.  Fairly soon the manual wheelchair became too much for me to handle and I absolutely HATE being pushed.

Two years ago, (or is it nearly three?), I bought an electric wheelchair.  The freedom this gave me is not one I would give up lightly.  It enables me to travel and sightsee and just to do ordinary mundane things like go to the supermarket.

Over the last few months my pain has been increasingly prominent to the point that even taking large doses of morphine was not doing away with it.  Let me rephrase that; pain killers do not end pain what they do is dial the pain down enough so that one can still have a good quality of life.

The Friday before last I was speaking with the manager of Tesco’s who is a really nice woman.  She takes a drug called Gabapentin, as well as tramadol and morphine.  I think she has endometriosis.  Anyway, when she mentioned the Gabapentin I vaguely remembered that the neurologist that I saw six years ago mentioned this drug.  I refused to even consider it because it is a drug for epilepsy and I had been on carbamazepine before and absolutely hated it because it felt like I was living in a bubble.  It numbed me too much. I was on it for mood control not for pain control. This was many years ago.

Now my pain had been so bad recently that I really began to think that I would not be able to show my dogs and I had started to think that my quality-of-life was such that I really didn’t want it.

I made an appointment to see Elizabeth and the first thing she said when she saw me was “oh dear, you’re having a bad time.” I asked her about the Gabapentin. She immediately smiled and said “what good idea.” She reassured me regarding side-effects and said I could start on the lowest dose which is what I have done.

It has made an enormous difference.  I have only been on it for six nights and for each of those nights I have slept for six hours without waking up.  Not because it has a sedative effect but because of its nerve blocking properties.  That pain is not waking me up.  I still have to take the tramadol and paracetamol and morphine but not as much and I am feeling so much better.

I am frightened of medication because I have had some serious side-effects from drugs, one of which nearly killed me.  I had been given a prescription for tramadol and it was two years before I took it! When I was given the morphine I took it straight away but I went next door to my neighbour who is a nurse and took it with her and then sat with her for an hour.  It immediately dealt with my pain and the only side effect I had was my face flushed. Previously, the drugs have made me feel completely panic stricken and I have had hallucinations.  They have made my skin crawl.  It is hard to describe just how dreadful some drugs have made me feel.

The good thing about Gabapentin is that I can work up to 3 g a day if I need to.  My disease is progressive so drug intake will always increase not decrease.

I am very fortunate that I have these problems now because even 30 years ago there was not the treatments that are now available.

I am unable to take anti-inflammatories the because of my heart problems.

There is no point me promising myself or anybody else that I will not wait until the bitter end before I give in and ask for help. My track record in that department speaks for itself.

It is not a completely negative trait because it is this stubbornness that keeps me enjoying my life day-to-day and planning for the future.  I am an optimist most of the time.  I enjoy each day and deal with each day one day at a time.  I do have to to make myself get on with things.  I am so lucky that I have my dogs because they are completely dependent upon me for their welfare so I cannot lay in bed feeling sorry for myself no matter how much pain I am in or how tired I feel.

To be honest it is not totally stubbornness on my part.  I was brought up to believe that only sissies moaned about pain and took medication.  Although I know that that is totally ridiculous, and that my father was a complete dickhead, it is not so easy to wipe that particular tape.

There is a downside as well as an upside to every decision that we make. I have found that many people will not accept this fact.  Even with the good things in life there are downsides.  One of the most fundamental things that people do not understand is that the more security we have the less freedom we have and the more freedom we have the less security we have.  You cannot be totally free and totally secure.

ANOTHER FIRST

I went to meet my friend Marilyn in Peterborough today.  This is the first time I have been anywhere other than my local supermarket with the wheelchair on my own.  It went very well.  I spent the last two hours on my own going around the shops.  The only time I felt vulnerable was having to go down into the basement to use the toilet.  It crossed my mind that if anybody wanted to take advantage of my situation this is where they could.

I bought myself a nice pair of rimless frames as I'm getting my eyes tested tomorrow because my prescription has changed-again!  I also bought a pair of prescription goggles for swimming.  They are quite amazing, I was really surprised at how well I can see through them.  Much better than having to put contact lenses in every morning.

It has rained on and off today but has done little to make it feel cooler.  In fact it made it more humid.  Even the dogs just lays about not wanting to do anything.

I am getting much better at using this voice dictation software.  It does make errors, which I have to correct, but it is still far better than my typing and less time-consuming.

Morons From Earth

We went to see Harry Potter and The Half Blood Prince yesterday at the cinema. Not something I do very often and probably won't again.

The reason for going is the enjoyment of the film on the large screen with surround sound. However, my physical problems make it a miserable experience. I took painkillers but that doesn't cover it 100% and I still have to move constantly and I feel self concious about that. Apart form feeling self conscious, it just bloody hurts to move and I have to move because I am hurting! At the end of the film I couldn't even get up on my own and it as areal struggle even with John helping me to my feet. As you can probably understand form my words, cinema going is now off the menu.

I could manage it and keep still if I took a morphine and a 5mg valium. That does it for me at home on the infrequent occasions I need it. Then I can lean back in the recliner and watch a film, usually a subtitled one. However, our nearest cinema is 24 miles away and I don't think it would be wise for me to drive there or back under the influence.

It would have been more comfortable to have used Daniel and sat in him for the duration of this film. Except for one thing. The special place for wheelchairs is 4 rows from the screen. That would just have made matters worse for me, especially in the neck. I guess they think that those of us who use wheelchairs are too addled to care and probably just sit there drooling and groaning and so it doesn't matter we can't see the f*cking screen too well.

Whitney has received many cards and I am surprised at some of the senders. Pleasantly surprised. I have also been disappointment to see where the jealousy comes from. It really is sad that others feels this way.

I have felt envious, but not jealous I think. Meaning I have wanted what I have seen others gaining and have done what I could to get it for myself if it was feasible. However, I have not wanted to take what belongs to others nor devalue them or their success. Speaking purely about dog showing, most success is deserved. A small part of the success is not deserved and we all learn to accept that because we can't do anything about it. We can choose not to enter under judges we know to favour friends. We can also choose NOT to play that game. Not all of us make the wise choice.

I know that Whitney has won on her own merit, not because I am judging a world famous show soon, not because I am friends with the judge, not because I am judging the next show, not because of anything. I cannot scratch anyone's back so Whitney wins because of her merit. End of story. I am happy for that.

I was supposed to be doing a show on Sunday and then on Wednesday and then on Saturday. However, an error was made somewhere and the show e thought was Wednesday is in fact Tuesday, and as it is 250 miles from home, it becomes infeasible to do the Sunday show and the Tuesday show. So I am going to the Tuesday show and then the Saturday show.

Edna has settled in very well though she is not as accommodating as she was when she first arrived. True to her breed, she is a stubborn little madam. She is arguing about when and where she will eat. She will not win and has not figured that little piece of information out yet. She will. In time.

I bought a waistcoat off an Ebay seller. 10 days later they told me they did not have it in stock. I was most displeased. I found another seller and I wrote to them asking if they had it in stock. They assured me they did. They took a week to tell me they did not and a further week to refund me. At the beginning of this week, I wrote to another seller who not only assured me they had it, they also had it in my size. They did not. They refunded me today. What the f**k is it with these idiots? Why are they listing an item that is not in stock, for one, and for two, why the hell are they lying about it? They know they will get caught out. MORONS.

Oh and speaking of morons-Haagen Dazs (or is it Hagen Daazs, doesn't look right) wrote and told me they did not do coffee flaour cos there was no call for it, despite the flavour being widely available on the mainland (ie. in the rest of EU). Okay, so how come Tesco and Waitrose both do their own coffee icecream? Waitrose indeed do two different ones. For a supermarket to sell their OWN LABEL there must be some call for it. No?

PEST

These were taken on our first day in Budapest. The title of this post is Pest because we were in Pest. Buda is across the river.

It was freezing cold, minus something C, and very windy. We had also just discovered that the city is useless for wheelchair users. I was furious. More because I was cold and tired from the previous day's driving. We took Daniel back to the hotel and when I had calmed down, I took painkillers and decided I would have to walk. I hadn't driven 1250 miles to sit in my hotel room.

I discovered that painkillers don't enable me to walk as if nothing is wrong, without pain, or at a normal pace. They do take the edge off though and I felt rather pleased with myself that I managed it.

On the way back to the hotel, to take Daniel back, I nearly got run over by a woman in a car as I was riding him over a pedestrian crossing. Like Italy, drivers seem not to care abotu traffic lights or pedestrians.


It happened again very soon afterwards and during our stay, I really had to watch out cars that wouldn't stop as I crossed roads. Not just that, they came around corners paying no heed at all to what might be in front of them.

As you can see though, the city was beautiful. I have many more pictures to post.

READY STEADY GO

SWIMMING

I awoke to go for my swim but my body didn't' think it was a good idea so I just had a pee and went back to bed, giving myself permission to sleep until 8am. Someone tapped me on the shoulder at precisely 8am and I woke up. The tap was gentle and I did not jump. If that was a dream, it was very real. The tap was a real tap.

WATCH IT!

It reminds me of what Doctors and nurses put on my notes if I have to stay hospital: " if you need to wake this patient, do so from a safe distance. " Why would they write that? Well, if they don't they usually get hit. I can't help it. Even my John knows not to touch me when I am asleep and to call me from a safe distance. Even after all this time, I still have what is known as 'exaggerated startle response', one of the common traits of PTSD.

GET DOWN!

Which reminds me of a funny story at my expense. I was caught in heavy traffic on a road right next to Heathrow. As I sat there, I could see this 747 bearing down on me. I watched with mounting panic and eventually jumped out of car to run but realised I couldn't run from it so I threw myself on the road and covered my head. The 747 just flew over me and landed where it was headed, the runway. I did not know the runway was there and I could have sworn this plane was going to land on me. I really felt silly and slunk back into my car and drove off at a snails pace because of the traffic whereas I wanted to get away from all those people who had witnessed my mistake.

POO

Oh and I have discovered that there is a side effect to the Colofac after all. I have stopped taking it for almost a week to see what difference it makes. I was concerned because I didn't think my poo ought to look like a dark Mr Whippy (here that is the ice cream that comes out when you pull a handle down on a ice cream machine. It's horrid stuff.)Anyway, I now know that that is the side effect of the drug. No big deal.

DRUGS

I have also not taken any drugs other than the morning and night heart and blood drugs. This morning, I have taken paracetamol and that is it. I am just seeing how all these work and seeing how and when I must use them and at what strength. Meaning I have three stages, paracetamol, paracetamol and codeine and Tramadol with the paracetamol. My back and hips are very sore this morning so I took the paracetamol and if that is not enough, I know to take the Tramadol too. I think it is a good idea to give my body a break form the drugs now and then.

POWER CHAIR

I went and looked at the wheelchair with power. I liked it very much. It has a joystick. At first I found it hard to control, then I was shown how to set the speed first with a button. I was trying to control the speed with the joystick which is only for side to side and back to front movement. The machine is £1600, so not all bad as most others were £2500 to £4000.

I have to weigh this up. We can manage this in that it comes apart, will get in the car etc. However, if we are visiting a place that has several stairs we might be stuffed. All we do now is I get get out, and John carries the chair up. It won't be possible with this. Although I did say to John last night that we could ask someone for help. As I wrote that last sentence, my stomach gave a little flip of approval. So perhaps that is the answer. I have to say that this will take a lot of the fatigue away. It means John doesn't have to push when my arms five up or my shoulders are too sore. My shoulders are causing me trouble now whereas they didn't before. I have trouble getting dressed now because of them. Not so much pain but getting them to move. By this I mean the sockets.

EDIT 12:27pm : I have just come home with a Power Chair. Sorted.

WHAT DO YOU THINK?

I have been looking into buying a powerchair. A wheelchair with electric power that I control myself. NOT a mobility scooter but a regular wheelchair with power. I don't like the scooters and they are not suitable for when we go into restaurants etc.

They are expensive. At present we use an ordinary wheelchair with large wheels that I can control myself. However, not when I am tired and also I now have painful shoulders, which hurt just getting dressed. So using this chair for long periods is not on and then John pushes me which he says is no hassle and not a chore or heavy work. However, I don't like it. Also if we go up an incline, I have to get out and walk and inclines are more painful for me.

I have wondered about the cost for a person who is not paralysed but John thinks that is a silly thing to think of.

The truth is if I go shopping, or out anywhere, I need a wheelchair. I can't walk for long and beside the pain, I get tired very quickly. Even when medicated to the hilt.

The convenience of the present chair is that it is easily put in and out of the car. It is easily moved empty and folded. It is easy to for me to get out and have it folded up when going into places that are not accessible but don't have a load of steps.

The power versions are not so easily dismissed. Like in some restaurants, tho it is easier for me to sit in my chair, it isn't possible so the chair is folded and the staff put it out of the way. Not that easy with a powerchair, if at all possible.

I know that a powerchair would definitely get used but I am wondering if in the long run it will cause more problems than it solves. Also, from the limited looking I have done, it seems the power packs are about 35kg(77lbs) and that is very heavy for John to lift in and out of the car.

Perhaps all these concerns will be addressed by the people at the mobility centre.


I have only just started to feel better. My gut is still sore and I still have the runs. I am really pissed off that one upset ruins 4 dyas of my life. I have had calls from people who were concerned about how ill I looked at Cruft's. Word got around about what happened and all seem to be of the same opinion that those people were vile and out of order. Yet there is this part of me that thinks it was nothing really and certainly shouldn't have had this affect on me. It has though and that is that. I am back at the pool in the morning if my gut allows it.