This weekend I had another reminder how life just gets more difficult when you can't walk very far.
I was visiting my in-laws, who had a local music festival going on. We had arranged some time previously that we would go, and tickets had been bought and arrangements made. We travelled down the day before so I could rest adequately for the big day and I decided that I would go for two sections of the event. I would go for lunch when it started and stay for a couple of hours to sit in the sun and enjoy the festival atmosphere and then go back to the in-laws for a rest. I would then go back for the last couple of hours between 8-30pm and 10-30pm. That way I would get to experience the whole nighttime and headline atmosphere.
Can you imagine my dismay when we unloaded the scooter from the car and found I had a puncture?
The other half quickly leapt into action calling round several mobility shops in the area, to find none that could help us. While this was going on I was so upset I had to go inside and take some deep breaths. I was so angry at this simple puncture because it seemed to sum up everything about my life that is extra hard.
It took a great deal of soul searching before I bought the mobility scooter. I didn't want to do it and my other half didn't want me to have to do it, but after we moved into this house, my health deteriorated and I found I couldn't get to the corner shop. We live on a hill you see. Going down a hill isn't that hard for me, but coming back up again, that is impossible. Without a mobility scooter I became trapped in my own home. If I wanted to go anywhere I had to ring for a taxi or ask for a lift. With the scooter I could go to the doctors, buy a loaf of bread and even get a haircut, without having to ring for a taxi. I could go out on a whim, you know, the way healthy people do. I decided to get a scooter and once I had it, I knew that I could never manage without one again.
Having a puncture at the weekend meant my in-laws having to drive me to the festival and back. They had to wait in for me to call and tell them when I had reached my limit. When I reached my limit I tried calling and there was no answer. In the end my other half had to walk back round to the house to find that his mother had taken her hearing aids out and hadn't heard the phone, while his father had popped out for a bit. She had forgotten to put them back in when he went out, and that is why she missed my calls. By the time I eventually got back I was in a foul mood because I had to rely on other people and they had to adjust their day to accommodate my health, and it hadn't even worked properly. I was also in more pain because I had stayed longer than I intended and had got myself worked up and angry. I never did go back to the festival to enjoy the headliners. I think I knew that if I had rely on the in-laws I would be worrying about being stranded again because of some strange and unlikely coincidence.
So whilst my whole weekend wasn't ruined by the puncture, it certainly limited my enjoyment, and probably increased my pain levels due to pacing inadequacies and stress.
Everything in my life is so much harder than it would be if I was
healthy. I do believe that most things can be achieved if you apply a
little lateral thinking and clever scheduling, but quite often it also includes applying money to the problem, like buying a scooter or paying
for taxis.
I finally got my scooter tyre inner tube replaced today. The scooter repair people came out the day after I called them. I am now mobile again. It cost me £48 to get my freedom back. I only had one day of being stuck at home with no way of getting out, but it reminded me of all the things I hate about being trapped in my house, it feels a little bit too much like being trapped by my own body. It's another example of why it is so expensive being disabled. I think most of that £48 cost was call out fee. Because I am disabled, someone has to come out to me to fix the scooter. It fills me with horror what would happen if I didn't have the money to repair the only thing that gives me true freedom.
I feel guilty for feeling so frustrated and angry at my situation when I have the benefit of a supportive partner, family and friends and mobility equipment that helps me and is repaired when things go wrong. But, whilst I know that lots of people have it worse than me, I can only tell my story and how my disability effects me, and this really made me upset, so I'm sharing it.
Showing posts with label Aids. Show all posts
Showing posts with label Aids. Show all posts
Tuesday, 9 August 2011
Saturday, 9 July 2011
Going on Holiday
This weekend my partner and I sat down and started researching holidays. It's a huge thing to do when you have ill health. Our trip to Turkey last year was our first foreign holiday since 2001. It was a massive leap of faith to try and do it and we learnt a lot from our experiences. We hope that these lessons will enable us to have a better holiday this year. I'm sure we will make mistakes this time round, but at least they will be different ones!
As I just about managed the 4.5 hour flight to Turkey last year we have set this as our upper limit for air travel time, as I have surgery since then. I was miserable after both flights last year, but I'm hoping since the surgery I will be less miserable on this length of flight, but I'm not holding my breath, and packing my heat pads and TENS machine.
We have settled on a holiday to the Greek side of Cyprus, as the Blue Badge will be valid there and we plan on hiring a car for the whole week. Last time we only hired it for one day and had to rely on taxis the rest of the time. It should be relatively easy to drive there as they drive on the same side of the road as we do in the UK.
We have decided against a package deal as we want greater control over the place we will end up on arrival. In Turkey we stayed in a big fancy hotel with lifts, swimming pool and gardens and a bar. It was miles from anything else and it restricted us so much. We want to be somewhere that is close to shops and restaurants, so my partner can push me more easily in the wheelchair. We have also decided to go self catering so I can just stay in the apartment if I'm feeling rotten and will still be able to get food and drink without going on a huge hike through the hotel.
We had to do some very in depth research to find somewhere that would work for us. We settled on Peyia which is a small town outside Paphos, that is close to the coast. It looks lovely, if a bit hilly. We are taking my wheelchair, which we will be able to fold up into the boot of a hire car, but we have also found a great service. It's called Paraquip and it rents out all sort of living aids and mobility equipment. They even deliver and collect free of charge from the area we are going to be staying. We plan on hiring a mini scooter that we can fold up into a car boot. This will give us the option of using either the scooter or wheelchair on day trips. I'm thinking that the scooter will get used more, as I prefer to be self propelling and to be more in control of my direction. The scooter will also enable us to go out more easil,y round and about in Peyia to the lovely looking restaurants and shops. I didn't really get to do any wandering or wheeling around in Turkey. I love doing that, and I couldn't. Being in a village, rather than a city, will hopefully make everything much less spread out.
We have found a great looking apartment to rent through a lettings website and have checked through email that the apartment has lift access. The photos also show nice padded chairs and sofas, including padded chairs on a terrace so I should be quite comfortable in the apartment, which is really essential. There is also a pool to laze around that we share with the other apartments in the complex.
We located the complex on Google Maps and worked out how far it was, using the map scale, to the town centre. We completely underestimated the distances on Google Maps last year, which is why we were so cut off from everything in our leviathan of a hotel. This time we pulled up maps of our home neighbourhood and the area of the holiday complex and compared the distances against familiar places. We think we are going to be approximately 200-400m away from the town centre, which is great.
We also have to get specialist travel insurance to cover the wheelchair etc and any medical costs. We used Travelability last time. If anyone has any other recommendations they would be gratefully received.
Whilst all this is very exciting to be organising, it also incredibly expensive. We have so many additional costs that the able bodied don't have. There are so many other things we need to think about, like informing the airline about my physical requirements etc. It was much easier in 2001 before I got really ill. I only had pain around my periods then, and we timed the holiday just right so that I didn't really have any mobility issues. I got tired and sore if I did too much, but that "too much" marker was a lot further away then. Too much was after a long day trip that involved going round some caves, a trip on a boat and round a small island, plus some shopping. We just rested up the next day and then I was fine again. I can't tackle anything like that now. In fact all of what I experienced in that one day is probably what I'll manage over the course of a week.
I'm just excited to be going somewhere different, where the culture is not my own, where the food is interesting and the weather is warm. That's all I need to make me happy. That is what most people need to be happy. I know how incredibly lucky I am to have a partner who can afford to pay for all the additional holiday expenses. Not many people are as fortunate as I am. If we had to rely on just my benefits, as most sick or disabled people do, there would be no holiday, either abroad or in the UK, ever. It would be one day after another of the same tedious, painful grinding existence. Everyone needs to get a break from their everyday existence and it's even more important when the everyday is so difficult.
Whilst it does require more effort and greater cost to organise my holiday, than it would if I were fit and healthy, I can't complain too loudly about it. I am getting to visit a lovely and interesting part of the world, when so many of my counterparts never get to experience anywhere other than their own four walls. If you are poor, but healthy, at least you can go camping! When you are poor and sick, you can't go anywhere. I can't believe that I didn't think about these things when I was healthy, but that's the problem isn't it? No one thinks about these things until it affects them directly, or someone close to them. It's so easy to take holidays for granted. That's never going to happen to me again.
As I just about managed the 4.5 hour flight to Turkey last year we have set this as our upper limit for air travel time, as I have surgery since then. I was miserable after both flights last year, but I'm hoping since the surgery I will be less miserable on this length of flight, but I'm not holding my breath, and packing my heat pads and TENS machine.
We have settled on a holiday to the Greek side of Cyprus, as the Blue Badge will be valid there and we plan on hiring a car for the whole week. Last time we only hired it for one day and had to rely on taxis the rest of the time. It should be relatively easy to drive there as they drive on the same side of the road as we do in the UK.
We have decided against a package deal as we want greater control over the place we will end up on arrival. In Turkey we stayed in a big fancy hotel with lifts, swimming pool and gardens and a bar. It was miles from anything else and it restricted us so much. We want to be somewhere that is close to shops and restaurants, so my partner can push me more easily in the wheelchair. We have also decided to go self catering so I can just stay in the apartment if I'm feeling rotten and will still be able to get food and drink without going on a huge hike through the hotel.
We had to do some very in depth research to find somewhere that would work for us. We settled on Peyia which is a small town outside Paphos, that is close to the coast. It looks lovely, if a bit hilly. We are taking my wheelchair, which we will be able to fold up into the boot of a hire car, but we have also found a great service. It's called Paraquip and it rents out all sort of living aids and mobility equipment. They even deliver and collect free of charge from the area we are going to be staying. We plan on hiring a mini scooter that we can fold up into a car boot. This will give us the option of using either the scooter or wheelchair on day trips. I'm thinking that the scooter will get used more, as I prefer to be self propelling and to be more in control of my direction. The scooter will also enable us to go out more easil,y round and about in Peyia to the lovely looking restaurants and shops. I didn't really get to do any wandering or wheeling around in Turkey. I love doing that, and I couldn't. Being in a village, rather than a city, will hopefully make everything much less spread out.
We have found a great looking apartment to rent through a lettings website and have checked through email that the apartment has lift access. The photos also show nice padded chairs and sofas, including padded chairs on a terrace so I should be quite comfortable in the apartment, which is really essential. There is also a pool to laze around that we share with the other apartments in the complex.
We located the complex on Google Maps and worked out how far it was, using the map scale, to the town centre. We completely underestimated the distances on Google Maps last year, which is why we were so cut off from everything in our leviathan of a hotel. This time we pulled up maps of our home neighbourhood and the area of the holiday complex and compared the distances against familiar places. We think we are going to be approximately 200-400m away from the town centre, which is great.
We also have to get specialist travel insurance to cover the wheelchair etc and any medical costs. We used Travelability last time. If anyone has any other recommendations they would be gratefully received.
Whilst all this is very exciting to be organising, it also incredibly expensive. We have so many additional costs that the able bodied don't have. There are so many other things we need to think about, like informing the airline about my physical requirements etc. It was much easier in 2001 before I got really ill. I only had pain around my periods then, and we timed the holiday just right so that I didn't really have any mobility issues. I got tired and sore if I did too much, but that "too much" marker was a lot further away then. Too much was after a long day trip that involved going round some caves, a trip on a boat and round a small island, plus some shopping. We just rested up the next day and then I was fine again. I can't tackle anything like that now. In fact all of what I experienced in that one day is probably what I'll manage over the course of a week.
I'm just excited to be going somewhere different, where the culture is not my own, where the food is interesting and the weather is warm. That's all I need to make me happy. That is what most people need to be happy. I know how incredibly lucky I am to have a partner who can afford to pay for all the additional holiday expenses. Not many people are as fortunate as I am. If we had to rely on just my benefits, as most sick or disabled people do, there would be no holiday, either abroad or in the UK, ever. It would be one day after another of the same tedious, painful grinding existence. Everyone needs to get a break from their everyday existence and it's even more important when the everyday is so difficult.
Whilst it does require more effort and greater cost to organise my holiday, than it would if I were fit and healthy, I can't complain too loudly about it. I am getting to visit a lovely and interesting part of the world, when so many of my counterparts never get to experience anywhere other than their own four walls. If you are poor, but healthy, at least you can go camping! When you are poor and sick, you can't go anywhere. I can't believe that I didn't think about these things when I was healthy, but that's the problem isn't it? No one thinks about these things until it affects them directly, or someone close to them. It's so easy to take holidays for granted. That's never going to happen to me again.
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