image: now and zen photography
I’ve got that feeling again. That one of living in a nightmare. The one where soul-deep sort of panic lies in my chest like acid. Relentless. Unforgiving. Unchanging. The one where my throat feels constricted and nausea sits heavily in my stomach.
It’s not even necessarily caused by big pain (although that will kick-start it). It’s caused by day upon day, week upon weeks, month upon month, and now over half a decade of pain, feeling unwell, exhausted, rapid and irregular heartbeats, weakness…the list goes on. Ultimately, it’s caused by the inability to do things, choose things, a lack of freedom. That’s what causes the panic. The fact that the last six years have passed me by without me really doing anything, achieving anything, changing anything; the idea that this is now my life, and will be for as many years as I have left to live.
I sometimes think that someone, some ‘power’, is going to tell me that the accident and all it has led to has been a mistake. That it will be undone. That I will be given back the body I had before it (painful as it was, it was nowhere near as constricting as this I have now). I will be given back a life where I can go out for a walk on a sunny day, clean my fish tank, tidy my house, go for a bike ride, get a job and go to work, have another child, have sex, make plans, just. Have. Normal. Freedoms. Then I realize that there is no such person or power. I’ll have to wait, I have thought to myself, for my next life for these things. But even if reincarnation exists, I won’t have the memory of this life in that life, so I won’t know gratitude, won’t appreciate the simple liberation of having a ‘normal’ body.
I do not appear disabled enough, am not always disabled enough to fit in with wheelchair users. I am disabled enough to not be a ‘normal’ person. I don’t feel that I fit in to either social group. I use a wheelchair when I have to, although there are days I should use it when I don’t because I figure the more time I spend in a wheelchair, the more time I am going to need to spend in a wheelchair. I have lost so much muscle tone that I need to move whenever I can to try and build up some sort of strength. Because of EDS and my lax joints, I cannot really push myself in my wheelchair, certainly not for any useful distance, so I cannot go out alone in my wheelchair. I cannot use the bus which passes just over half a mile down the road, because I cannot walk there, use the bus, walk in town, get the bus home and walk back to my house. I have to use taxis. A return taxi trip costs between £20-28, so I cannot always justify the cost of using a taxi. So I cannot really leave my home independently. I spend 98% of my time in my house. Of that, 95% is spent alone. Friends rarely come to see me. Even if some want to, I am not always in a physical condition to be around people. When my pelvis is very bad, it hurts to breathe, and therefore hurts to talk. I get lonely. I am isolated.
The last time I really felt the panic was three years ago when I spent a month in hospital. After eight months in bed in agony, losing two stones (28 pounds) and with my hair falling out, I’d had enough, called an ambulance and ended up in hospital for a month. The two consultants ‘caring’ for me didn’t have a clue what to do to help. Neither did they have the intelligence or inclination to contact EDS or pelvic specialists to try and find some sort of treatment. They eventually discharged me as they needed the bed. Nothing changed.
Nothing changed.
Nothing changes.
I know I am far more fortunate that some others. I know this, but it doesn’t help me feel any better. The only thing that would help me is to be in control of my pelvic condition, for it to stop. That would give me at least, a fighting chance to rebuild my strength and try top stave of the degeneration of EDS.
The panic started building again last year. Then it went. Now it is back. I want to stop time until I have somehow made things better, made my pelvis better, and I have a chance to do something with my life. Have you seen the ‘Terminator II’ film? Do you remember the feeling of relentless foreboding, the endless terror of the situation never quite being over? That’s the closest I can come to explaining my panic. Perhaps panic is the wrong word. Dread. Boredom. Hopelessness. Waste. Stasis. It’s all part of it. There’s nothing and no-one able to lift it. I don’t feel it all the time – I’m not a negative person by nature. If I was, I would have given up and ended my life long ago. When I most need someone to talk to, to get the undoubtedly negative thoughts out of my head, there’s nobody who really wants to listen. Most of my family simply aren’t interested and don’t even understand what my medical issues are. Those closest to me hurt when I tell them, can’t cope with the truth of my feelings, and friends don’t always want to listen – and why should they? To be sure, my thoughts bore me some times! And sometimes, quite frequently in recent months, my mind has turned to suicide, euthanasia. It’s not that I want to die, it’s just that I am sick of living in constant pain of varying degrees and of not doing anything with my life. I do not have Depression. I had that in the 1990s. Today, I have ambitions, things I want to do, I see the beauties in life. I just. Can’t. Get. To. Them.
I saw a counsellor for a while last year. She was a lovely woman who told me she doesn’t know how I cope. She also told me that she didn’t think she could help me, as she is trained to deal with emotional/psychological problems that have a root cause and can be cured. She said that my misery stems from a physical cause, and she is not trained to deal with that. In the end, the sessions stopped. Instead, I asked for a referral to a Pain Clinic where there is a psychologist who is trained specifically to deal with people who have pain. About seven months ago I called the clinic and was told there is a 20 week waiting list. I am still waiting. I’ll call them again next week. I’ll try to stop my mind from turning against me.
So what do I do when this feeling is inside me? I try to ignore it. I try to wait for it to pass. I will sleep, when I can, just to get away from it. I dream a lot when I’m sleeping. I am yet to have a dream in which I am disabled. In every dream I have I have a normal body, with no limits. Last night I dreamt that I was tap-dancing (something I’ve never done) until I had a huge blister on the sole of my foot.
Yes, I wait for the panic to subside, let myself cry when I need to, let myself wobble, knowing I will find the mental energy to continue. Until the next panic, the next wobble, comes along.
It’s not even necessarily caused by big pain (although that will kick-start it). It’s caused by day upon day, week upon weeks, month upon month, and now over half a decade of pain, feeling unwell, exhausted, rapid and irregular heartbeats, weakness…the list goes on. Ultimately, it’s caused by the inability to do things, choose things, a lack of freedom. That’s what causes the panic. The fact that the last six years have passed me by without me really doing anything, achieving anything, changing anything; the idea that this is now my life, and will be for as many years as I have left to live.
I sometimes think that someone, some ‘power’, is going to tell me that the accident and all it has led to has been a mistake. That it will be undone. That I will be given back the body I had before it (painful as it was, it was nowhere near as constricting as this I have now). I will be given back a life where I can go out for a walk on a sunny day, clean my fish tank, tidy my house, go for a bike ride, get a job and go to work, have another child, have sex, make plans, just. Have. Normal. Freedoms. Then I realize that there is no such person or power. I’ll have to wait, I have thought to myself, for my next life for these things. But even if reincarnation exists, I won’t have the memory of this life in that life, so I won’t know gratitude, won’t appreciate the simple liberation of having a ‘normal’ body.
I do not appear disabled enough, am not always disabled enough to fit in with wheelchair users. I am disabled enough to not be a ‘normal’ person. I don’t feel that I fit in to either social group. I use a wheelchair when I have to, although there are days I should use it when I don’t because I figure the more time I spend in a wheelchair, the more time I am going to need to spend in a wheelchair. I have lost so much muscle tone that I need to move whenever I can to try and build up some sort of strength. Because of EDS and my lax joints, I cannot really push myself in my wheelchair, certainly not for any useful distance, so I cannot go out alone in my wheelchair. I cannot use the bus which passes just over half a mile down the road, because I cannot walk there, use the bus, walk in town, get the bus home and walk back to my house. I have to use taxis. A return taxi trip costs between £20-28, so I cannot always justify the cost of using a taxi. So I cannot really leave my home independently. I spend 98% of my time in my house. Of that, 95% is spent alone. Friends rarely come to see me. Even if some want to, I am not always in a physical condition to be around people. When my pelvis is very bad, it hurts to breathe, and therefore hurts to talk. I get lonely. I am isolated.
The last time I really felt the panic was three years ago when I spent a month in hospital. After eight months in bed in agony, losing two stones (28 pounds) and with my hair falling out, I’d had enough, called an ambulance and ended up in hospital for a month. The two consultants ‘caring’ for me didn’t have a clue what to do to help. Neither did they have the intelligence or inclination to contact EDS or pelvic specialists to try and find some sort of treatment. They eventually discharged me as they needed the bed. Nothing changed.
Nothing changed.
Nothing changes.
I know I am far more fortunate that some others. I know this, but it doesn’t help me feel any better. The only thing that would help me is to be in control of my pelvic condition, for it to stop. That would give me at least, a fighting chance to rebuild my strength and try top stave of the degeneration of EDS.
The panic started building again last year. Then it went. Now it is back. I want to stop time until I have somehow made things better, made my pelvis better, and I have a chance to do something with my life. Have you seen the ‘Terminator II’ film? Do you remember the feeling of relentless foreboding, the endless terror of the situation never quite being over? That’s the closest I can come to explaining my panic. Perhaps panic is the wrong word. Dread. Boredom. Hopelessness. Waste. Stasis. It’s all part of it. There’s nothing and no-one able to lift it. I don’t feel it all the time – I’m not a negative person by nature. If I was, I would have given up and ended my life long ago. When I most need someone to talk to, to get the undoubtedly negative thoughts out of my head, there’s nobody who really wants to listen. Most of my family simply aren’t interested and don’t even understand what my medical issues are. Those closest to me hurt when I tell them, can’t cope with the truth of my feelings, and friends don’t always want to listen – and why should they? To be sure, my thoughts bore me some times! And sometimes, quite frequently in recent months, my mind has turned to suicide, euthanasia. It’s not that I want to die, it’s just that I am sick of living in constant pain of varying degrees and of not doing anything with my life. I do not have Depression. I had that in the 1990s. Today, I have ambitions, things I want to do, I see the beauties in life. I just. Can’t. Get. To. Them.
I saw a counsellor for a while last year. She was a lovely woman who told me she doesn’t know how I cope. She also told me that she didn’t think she could help me, as she is trained to deal with emotional/psychological problems that have a root cause and can be cured. She said that my misery stems from a physical cause, and she is not trained to deal with that. In the end, the sessions stopped. Instead, I asked for a referral to a Pain Clinic where there is a psychologist who is trained specifically to deal with people who have pain. About seven months ago I called the clinic and was told there is a 20 week waiting list. I am still waiting. I’ll call them again next week. I’ll try to stop my mind from turning against me.
So what do I do when this feeling is inside me? I try to ignore it. I try to wait for it to pass. I will sleep, when I can, just to get away from it. I dream a lot when I’m sleeping. I am yet to have a dream in which I am disabled. In every dream I have I have a normal body, with no limits. Last night I dreamt that I was tap-dancing (something I’ve never done) until I had a huge blister on the sole of my foot.
Yes, I wait for the panic to subside, let myself cry when I need to, let myself wobble, knowing I will find the mental energy to continue. Until the next panic, the next wobble, comes along.