On the whole, I deal with my chronic pain and the problems that my pain causes, pretty well. I have good coping mechanisms and methods of ensuring I can get out house at least once a week. I have people I can talk to and have fun with and I have my creative outlets that fulfill my sense of purpose. The trouble is, about every 12-18 months I tend to get an overwhelming sense of futility. I look at my life and all I can see, every day, disappearing into the distance, is the grinding unending pain that makes me a captive inside my own body.
All I can see is a drug fogged brain, being held back from achieving all that it could, and a body that does not fulfil the needs of anyone. I look inside and I see is a great big black hole where my life should have been. I'm 38 and I've been ill for nearly 10 years. I look at my friends who have careers, or families or both. I look at my partner who can walk into town if he chooses on a nice day, but often doesn't because he feels guilty about leaving me behind.
I look at the plans we have made for a wonderful holiday in Cyprus and all I can think about is how much I resent having to make all these additional plans for coping, so we are able to enjoy ourselves a bit more than usual. I resent that we can't go on the adventurous holidays that my partner went on before we met, when he travelled to the Amazon, India and Nepal and round Vietnam staying in villages that saw a white face about once a year. I wanted to be able to join him on his adventures, and I can't, and probably never will.
I had such hopes and dreams when we first met. I longed to travel with my partner, to go to live music events, getting muddy in fields at festivals and going on adventures without plans and having no purpose except to explore and learn and enjoy. We started on this exciting life until 6 months into our relationship when everything started coming apart. Our exciting life was put on hold when I had my ectopic pregnancy. A few months after that, we went on our first holiday, just a last minute package deal to Greece, but it was wonderful. We weren't able to do all the things we wanted to, because I still wasn't properly well, but we thought it was the start of our life getting back to where we wanted it to be. But it wasn't. Things just started getting worse and worse and they never really got better.
I look back at all the dreams and hopes I had during that first year together and I weep because they were never achieved. I feel that as well as letting me down, my body has let my partner down. He never had his travelling companion. He has always had to be my support and guide. He has to walk down pathways before me to see if I can manage to get down them in my wheelchair. He has to push me over bumpy ground and go out to get supplies when I can't leave my hotel room because of the pain. He daren't leave me on my own for too long if he goes exploring on his own, because he worries that I might not be able to manage on my own in a strange place. I look at all the restrictions my body puts on both of us and I hate it so much. I hate that it won't do what it is supposed to do. I hate that I can't escape, not even for a day, and my partner has to watch me fighting to keep my head above water. He has to watch my pain and my struggle to stay sane through the dark times of resentment.
I know that my sadness and hate will leave me, eventually. I don't know how long it will take me this time to climb out of my pit of despond. I just know that I have to keep getting out of bed each day. I have to keep getting dressed and washed. I have to eat and talk to people when they talk to me. I have to pretend everything is ok until it becomes ok again. Sometimes, you just have to fake acceptance until it sticks.
Tuesday 19 July 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.
Wednesday 6 July 2011
Just a bit of imagination
Today we all got the news that a local authority, Royal Borough of Kensington & Chelsea, and the Supreme Court, think it is quite acceptable for someone to be forced to use incontinence pads when they don't have to, in order to save money. Apparently the argument that incontinence pads are safer and give greater privacy than getting up to use a commode, actually holds weight in Britain today.
The individual involved in this legal battle, Elaine McDonald, is not incontinent. She can control her bodily functions but she does need to empty her bladder several times a night. This former ballet dancer, who once ruled her body with strength and grace is being held hostage not only by the devastation caused by a stroke, but by her own Local Authority.
Whilst I applaud the coverage of this legal battle on the news, I find it terribly sad that this case is the one that is being covered on prime time tonight, when I am sure that there are other equally disturbing cases not being covered because the individuals are less sympathetic. This woman was obviously fit and had great control of her body, how sad it is that she can no longer use it the way she once did. The media can show shocking before and after photographs that gain sympathy. It seems that the news broadcasters feel that the elderly are of more note to the British public, than the sick and disabled, or maybe I'm doing them a disservice, after all, it was Age UK that assisted in taking this case to the Supreme Court, not the BBC.
I was discussing, with my partner, yesterday the lack of interest in the treatment of the sick and disabled and he stated that it was because no one believes it can happen to them. Everyone knows they will definitely get old, but no one believes they will ever get sick or end up being cared for by others. I hate to think that our nation really is filled with individuals with such feeble imaginations.
At what point do the fit, young and healthy realise that one day they could get hit by a bus, have a disabled child or suffer a stroke? Do they think that we knew this would happen to us, or that we brought it upon ourselves somehow? It could happen to them and it could happen to them tomorrow. They never know when their health will fail or when an accident can happen, as those on this side of the fight know. Old age may seem a life-time away and something that you can prepare for later, but accidents and ill health happen, and are rarely planned for.
I just wish it were possible to convey the humiliation and horror of not being able to get to the toilet without assistance, and then to be told that you could no longer have that assistance. How do we awaken the imagination of a nation and help them see what it is like to live in a broken body, and what it would be like for them, if their bodies were broken too? Maybe if they could imagine for just one moment what it could be like, the young, fit and healthy would join us in our fight to be treated as equal citizens, with a right to dignity and a means of support. Maybe if Jude Law and Sienna Miller were in a film about it, we would gain more sympathy and respect. I do hope that this is not our only hope, but if it is, does anyone have their email addresses?
The individual involved in this legal battle, Elaine McDonald, is not incontinent. She can control her bodily functions but she does need to empty her bladder several times a night. This former ballet dancer, who once ruled her body with strength and grace is being held hostage not only by the devastation caused by a stroke, but by her own Local Authority.
Whilst I applaud the coverage of this legal battle on the news, I find it terribly sad that this case is the one that is being covered on prime time tonight, when I am sure that there are other equally disturbing cases not being covered because the individuals are less sympathetic. This woman was obviously fit and had great control of her body, how sad it is that she can no longer use it the way she once did. The media can show shocking before and after photographs that gain sympathy. It seems that the news broadcasters feel that the elderly are of more note to the British public, than the sick and disabled, or maybe I'm doing them a disservice, after all, it was Age UK that assisted in taking this case to the Supreme Court, not the BBC.
I was discussing, with my partner, yesterday the lack of interest in the treatment of the sick and disabled and he stated that it was because no one believes it can happen to them. Everyone knows they will definitely get old, but no one believes they will ever get sick or end up being cared for by others. I hate to think that our nation really is filled with individuals with such feeble imaginations.
At what point do the fit, young and healthy realise that one day they could get hit by a bus, have a disabled child or suffer a stroke? Do they think that we knew this would happen to us, or that we brought it upon ourselves somehow? It could happen to them and it could happen to them tomorrow. They never know when their health will fail or when an accident can happen, as those on this side of the fight know. Old age may seem a life-time away and something that you can prepare for later, but accidents and ill health happen, and are rarely planned for.
I just wish it were possible to convey the humiliation and horror of not being able to get to the toilet without assistance, and then to be told that you could no longer have that assistance. How do we awaken the imagination of a nation and help them see what it is like to live in a broken body, and what it would be like for them, if their bodies were broken too? Maybe if they could imagine for just one moment what it could be like, the young, fit and healthy would join us in our fight to be treated as equal citizens, with a right to dignity and a means of support. Maybe if Jude Law and Sienna Miller were in a film about it, we would gain more sympathy and respect. I do hope that this is not our only hope, but if it is, does anyone have their email addresses?
Sunday 3 July 2011
Odd Week
I have felt very strange this week. I have been more than usually resentful of my rubbish body and my limitations. I normally have quite a good handle on what I can and can't do and this week I felt like ignoring all of my experience for some bizarre reason.
I had two appointments at the start of the week that I had no choice about cancelling. The first was an appointment with my consultant on Monday, and the second was my Pelvic Pain Support Group on Tuesday.
My support group is in the process of being wound down. The woman who normally facilitates the group is on maternity leave and she has not been replaced, so other employees are having to pick up her work. Instead of having a monthly meeting we were having a meeting in June and one in September and then no more, even when the normal facilitator comes back. I am really angry about this. Apparently because the group is not a "treatment" with a finite end to it, they don't want to fund it anymore.
The stupid thing is that if this group had been made advertised more effectively and been made to work properly, as a form of counselling and a way of teaching coping mechanisms then this could have been made to work as a form of treatment. Instead sufferers of pelvic pain are left to fend for themselves or to try and get individual counselling, which is nigh on impossible.
As the group is being wound down, the only reason I have gone to the recent meetings is because I know that it helps the others if I am there. I am getting nothing from the meetings except an overwhelming feeling of rage and frustration that our NHS is being dismantled. The group may not have worked properly, but if it is running there is a chance of being able to correct it and get it helping lots of women. If it is cancelled, then who is is helping?
One of the women in my group did not even know about the changes in the welfare system. She had no idea that she is probably going to lose her money. She struggles financially as it is, as she has hospital appointments all around the country, with various specialists. She can't travel on her own, so her husband has to take time off work to take her and the travel is incredibly expensive. They are trying to manage as best they can on the money they have, which includes incapacity benefit and they are still struggling. When that money is withdrawn, my friend will not be able to get her hospital appointments.
I think, with hindsight, this meeting filled me with massive amounts of negative energy that I wanted to expel. Instead of resting up after the meeting and doing something positive like knitting or sewing, I went shopping, for the first time since the op.
I bought some nice things, but I didn't have to do it the way that I did. I could have been sensible and accessed the shop mobility scheme and got around town on a mobility scooter. Alternatively, I could have asked my partner to take me shopping at the weekend and have him push me round in the wheelchair. I decided to do neither of those things and I am still paying the price of my anger and frustration.
I made the mistake of trying to walk around some shops. I stupidly entering a shopping mall to get something to eat. I knew I wouldn't be able to get out unless I walked for what I knew would feel like miles. I had to stop at every available bench or perch. I KNEW I couldn't walk that far. I KNEW it would make me fall over for days, if not weeks, and I did it anyway because I was so angry at the world and my body that I decided to punish it. I pushed myself beyond my limits and I am still paying for it.
My body is rebelling. I don't blame it. I was stupid. I wanted to do things that I used to be able to do, because my world is falling apart and my place in it is uncertain. It is so stupid because the only person I am punishing is myself and the people who care about me. These are the people are getting less of me because I was angry at my body. It was stupid and childish and I should know better.
I know that I am lucky that my partner earns enough that if I lose my benefits we won't starve, we won't lose the house and we will still be able to afford heat and light, and to continue to run a car. Instead of being relieved about my own good fortune I am getting angry and I am grieving over everyone else's struggles. All the people I have come to know through the internet or my support group, or the people I see in the hospital waiting rooms, it is them I am angry about. They need someone to fight for them, because most of them don't even know that this going to happen, like my friend in the support group. These changes have received so little media coverage that most people who struggle to get out of bed every day are going to received a massive shock. They will open a letter in a few months time telling them that they are going lose a massive proportion of the income that is coming into their households. Can you imagine the devastation and the despair that will cause?
So all of these feelings have been bubbling under the surface and instead of taking them out and looking at them and dealing with them like a grown up sensible woman, I decided to push my body beyond it's endurance on something as STUPID as shopping. It wasn't for a family member, or a dear friend. It wasn't for my partner or any other valid reason. It was because I was angry and frustrated about my limits, so I decided to ignore them until it was too late.
So all in all, it's been a bit of an odd and angry week.
I had two appointments at the start of the week that I had no choice about cancelling. The first was an appointment with my consultant on Monday, and the second was my Pelvic Pain Support Group on Tuesday.
My support group is in the process of being wound down. The woman who normally facilitates the group is on maternity leave and she has not been replaced, so other employees are having to pick up her work. Instead of having a monthly meeting we were having a meeting in June and one in September and then no more, even when the normal facilitator comes back. I am really angry about this. Apparently because the group is not a "treatment" with a finite end to it, they don't want to fund it anymore.
The stupid thing is that if this group had been made advertised more effectively and been made to work properly, as a form of counselling and a way of teaching coping mechanisms then this could have been made to work as a form of treatment. Instead sufferers of pelvic pain are left to fend for themselves or to try and get individual counselling, which is nigh on impossible.
As the group is being wound down, the only reason I have gone to the recent meetings is because I know that it helps the others if I am there. I am getting nothing from the meetings except an overwhelming feeling of rage and frustration that our NHS is being dismantled. The group may not have worked properly, but if it is running there is a chance of being able to correct it and get it helping lots of women. If it is cancelled, then who is is helping?
One of the women in my group did not even know about the changes in the welfare system. She had no idea that she is probably going to lose her money. She struggles financially as it is, as she has hospital appointments all around the country, with various specialists. She can't travel on her own, so her husband has to take time off work to take her and the travel is incredibly expensive. They are trying to manage as best they can on the money they have, which includes incapacity benefit and they are still struggling. When that money is withdrawn, my friend will not be able to get her hospital appointments.
I think, with hindsight, this meeting filled me with massive amounts of negative energy that I wanted to expel. Instead of resting up after the meeting and doing something positive like knitting or sewing, I went shopping, for the first time since the op.
I bought some nice things, but I didn't have to do it the way that I did. I could have been sensible and accessed the shop mobility scheme and got around town on a mobility scooter. Alternatively, I could have asked my partner to take me shopping at the weekend and have him push me round in the wheelchair. I decided to do neither of those things and I am still paying the price of my anger and frustration.
I made the mistake of trying to walk around some shops. I stupidly entering a shopping mall to get something to eat. I knew I wouldn't be able to get out unless I walked for what I knew would feel like miles. I had to stop at every available bench or perch. I KNEW I couldn't walk that far. I KNEW it would make me fall over for days, if not weeks, and I did it anyway because I was so angry at the world and my body that I decided to punish it. I pushed myself beyond my limits and I am still paying for it.
My body is rebelling. I don't blame it. I was stupid. I wanted to do things that I used to be able to do, because my world is falling apart and my place in it is uncertain. It is so stupid because the only person I am punishing is myself and the people who care about me. These are the people are getting less of me because I was angry at my body. It was stupid and childish and I should know better.
I know that I am lucky that my partner earns enough that if I lose my benefits we won't starve, we won't lose the house and we will still be able to afford heat and light, and to continue to run a car. Instead of being relieved about my own good fortune I am getting angry and I am grieving over everyone else's struggles. All the people I have come to know through the internet or my support group, or the people I see in the hospital waiting rooms, it is them I am angry about. They need someone to fight for them, because most of them don't even know that this going to happen, like my friend in the support group. These changes have received so little media coverage that most people who struggle to get out of bed every day are going to received a massive shock. They will open a letter in a few months time telling them that they are going lose a massive proportion of the income that is coming into their households. Can you imagine the devastation and the despair that will cause?
So all of these feelings have been bubbling under the surface and instead of taking them out and looking at them and dealing with them like a grown up sensible woman, I decided to push my body beyond it's endurance on something as STUPID as shopping. It wasn't for a family member, or a dear friend. It wasn't for my partner or any other valid reason. It was because I was angry and frustrated about my limits, so I decided to ignore them until it was too late.
So all in all, it's been a bit of an odd and angry week.
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