Dancing. I forgot about dancing. I miss dancing. I miss having my headphones on and dancing around the house. I avoid any invite that might involve dancing.
Im fed up with it all......................
Saturday, November 22, 2014
Friday, November 7, 2014
LIFE & RESTRICTIONS
I wanted to write about my thoughts and feelings with regards to the restrictions that having this condition has put on my life.
It may answer some questions, as I would like to think that it would not only be people who suffer with this condition that read this, but also give those who are around people who suffer with chronic pain issues a bit on an understanding as to how it affects us mentally as well.
I get asked a lot, would orthotics not help. Well, no, not at this stage. I wore very good, expensive orthotics for a long time before the damage really happened. Having spoken to my physio, I think, because of the hypermobility issues, this was going to happen regardless, unless it could have been flagged when I was much younger.
I still wear my orthotics where possible, BUT to be honest, for me at this stage - ie, the waiting for surgery stage - my priority is comfort. Getting through a day. I discovered at the end of the summer that Sketcher Go Walks are the most comfortable piece of footwear for me. I tried wearing ankle braces, boots, orthotics, but ended up in such awful pain each time that it just wasnt worth it for me. So, my footwear is now a pair of Go Walk shoes, and a pair of Skechers Go Boots for the winter. I have hiking boots, but my feet really hurt after them, then I have a pair of zip up "fashion" boots that my orthotics fit into and will wear if needed.. I dont care.... comfort over pain!!!
So, I am never pain free. Ever, in both feet. I get shooting nervy pains, stabbing pains, throbbing pain, achey pain. Sometimes when Ive done too much it feels like my feet are in vices - and being stabbed.
Mornings are hard. Stairs really hurt. Then once they have "warmed up" and pain meds have kicked in, they arent too bad for a while. Afternoon the pain and aches in the legs start.... then my body spends its time trying to cope - leading to exhaustion...
By evening time - IF I havent done too much walking, I am "just" in pain - if Ive done some shopping - or any walking for more than about ten/fifteen mins, Im in trouble. I feel like my feet are BURNING.... (I have said perhaps I was a witch in my previous life - burned at the stake!!!).... I can think of no other term for the sensation and pain....
A lot of the depression associated with chronic pain, and particularly with regards to my own situation is how limited I am now. I thank the Universe every day that I CAN actually walk - albeit with pain, BUT, each of us can only be relative to our own situations. I can look at Jimbo down the road who is in a wheelchair, or Mary with an amputated leg, or the child with cancer, or chronic arthritis, and I CAN thank what I have, but its not always that easy....
I cant go walking for pleasure anymore - that is THE biggest thing I miss. I loved putting my headphones on, lead on my little Roxy and off we would go. It was my headspace. My decluttering of the mind. We used to go for big long forest walks, or just around the town, or the beach. All those are dreams to me now. Thankfully, if all goes well, I WILL be able to do those walks again - for pleasure.
I get down about the effects it has on my family life. My partner is absolutely wonderful. I thought this would drive a massive wedge between us, but it has only brought us closer. Im HAVING to let go of some control, and he is doing more. I have a teenager daughter - so thats not so easy. Glimmers of care here and there, but she is at the very egotistic stage of the teens, so its very wearing. I worry about the worry it causes my Mum. I know she is worried sick about me, and as much as I am 46 years of age, there is truth - mothers never stop worrying about their children. So I try to keep upbeat. For all those around me, but every now and again, I sink so low.
Im blessed with my work. I love it so much, even when Ive had a hell awful week, I can still look at it and say, thank goodness for it.
So, there are my thoughts on life and restrictions.
It may answer some questions, as I would like to think that it would not only be people who suffer with this condition that read this, but also give those who are around people who suffer with chronic pain issues a bit on an understanding as to how it affects us mentally as well.
I get asked a lot, would orthotics not help. Well, no, not at this stage. I wore very good, expensive orthotics for a long time before the damage really happened. Having spoken to my physio, I think, because of the hypermobility issues, this was going to happen regardless, unless it could have been flagged when I was much younger.
I still wear my orthotics where possible, BUT to be honest, for me at this stage - ie, the waiting for surgery stage - my priority is comfort. Getting through a day. I discovered at the end of the summer that Sketcher Go Walks are the most comfortable piece of footwear for me. I tried wearing ankle braces, boots, orthotics, but ended up in such awful pain each time that it just wasnt worth it for me. So, my footwear is now a pair of Go Walk shoes, and a pair of Skechers Go Boots for the winter. I have hiking boots, but my feet really hurt after them, then I have a pair of zip up "fashion" boots that my orthotics fit into and will wear if needed.. I dont care.... comfort over pain!!!
So, I am never pain free. Ever, in both feet. I get shooting nervy pains, stabbing pains, throbbing pain, achey pain. Sometimes when Ive done too much it feels like my feet are in vices - and being stabbed.
Mornings are hard. Stairs really hurt. Then once they have "warmed up" and pain meds have kicked in, they arent too bad for a while. Afternoon the pain and aches in the legs start.... then my body spends its time trying to cope - leading to exhaustion...
By evening time - IF I havent done too much walking, I am "just" in pain - if Ive done some shopping - or any walking for more than about ten/fifteen mins, Im in trouble. I feel like my feet are BURNING.... (I have said perhaps I was a witch in my previous life - burned at the stake!!!).... I can think of no other term for the sensation and pain....
A lot of the depression associated with chronic pain, and particularly with regards to my own situation is how limited I am now. I thank the Universe every day that I CAN actually walk - albeit with pain, BUT, each of us can only be relative to our own situations. I can look at Jimbo down the road who is in a wheelchair, or Mary with an amputated leg, or the child with cancer, or chronic arthritis, and I CAN thank what I have, but its not always that easy....
I cant go walking for pleasure anymore - that is THE biggest thing I miss. I loved putting my headphones on, lead on my little Roxy and off we would go. It was my headspace. My decluttering of the mind. We used to go for big long forest walks, or just around the town, or the beach. All those are dreams to me now. Thankfully, if all goes well, I WILL be able to do those walks again - for pleasure.
I get down about the effects it has on my family life. My partner is absolutely wonderful. I thought this would drive a massive wedge between us, but it has only brought us closer. Im HAVING to let go of some control, and he is doing more. I have a teenager daughter - so thats not so easy. Glimmers of care here and there, but she is at the very egotistic stage of the teens, so its very wearing. I worry about the worry it causes my Mum. I know she is worried sick about me, and as much as I am 46 years of age, there is truth - mothers never stop worrying about their children. So I try to keep upbeat. For all those around me, but every now and again, I sink so low.
Im blessed with my work. I love it so much, even when Ive had a hell awful week, I can still look at it and say, thank goodness for it.
So, there are my thoughts on life and restrictions.
Tuesday, November 4, 2014
Budget Cuts & Waiting
Its been a while since I updated this blog. To be honest, I have very little news apart from reporting constant chronic pain and having to take copious amounts of pain meds.
I had hoped that my op was going to be in October. I rang the hospital at the beginning of Sept, and was told in a very curt fashion that "oh no, you will not be having the surgery in October, it will be at least into the New Year"....... I have to say, I sobbed at this news. I had everything pinned on October. Mentally preparing myself. Starting to put in place the backup I would be needing, etc. I was devastated. BUT, as I always do, I pulled myself together and thought right, I just have to get on with it. What more could I do??
I was scheduled for another round of cortisone injections in both feet on the 13/10/14. As before I had the same Doctor doing the injections. Unfortunately, three weeks later, and they didnt work. What a waste.
So, at this stage, where am I at? I now have developed spasming calf muscles - in both legs. I woke up at 5am one morning and my whole left side of my calf was in spasm - as I tried to massage it I could feel it twitching and moving around.... Oh the pain, but while that was doing that, the other side felt like it was going to do the same. That was about two weeks ago, and my calf muscles constantly have felt like they were knotted.... so I made an appointment to have a deep muscle massage with a physio that I use.
I went to him today, and he couldnt believe that I was even able to get around with how knotted and tight my muscles were. He worked on them for over an hour, and now, I sit here with aches but definitely feeling much looser.
At times I feel total despair. I try to hide it from my loved ones, because they already know about the pain and I know they are frustrated and angry on my behalf.
Im terrified that my left foot is going to be too bad to be able to cope with my right one being in a cast and non weight bearing (NWB), as it is already under so much pressure and as bad as my right one. But I know I will cope..... I have no choice. And at this stage, I really and truly just want to get it over and done with. I hate that I am so restricted with what I can do. I hate that I am always so exhausted by evening time. I hate that I cannot do a simple task like the weekly shopping or spend half an hour hoovering my house without having to rest my feet for the rest of the day.
I am so very grateful for the job that I have. It really has saved me mentally as I enjoy doing it and it is a seated position. I have full support from my colleagues and my employers, so I really am blessed.
I often sit and think of how much worse i could be. I could have chronic arthritis, or have a condition that cannot be fixed. BUT knowing that surgery will most definitely give me back some quality of life is what frustrates me. The Irish Government have a lot to answer for. Our health system is in crisis. Too many people are struggling and in severe pain waiting on essential surgery. We have wonderful skilled surgeons who are desperate to perform these surgeries, but due to budgeting constraints, they sit and basically twiddle their thumbs in frustration.
I am thankful for so much in my life. I have wonderful people around me, my family, my partner and my kids, who must be all so sick and tired of hearing my groans and moans, my winces and ouches. My work colleagues who are caring enough to ask how I am.
My GP's who are so angry on my behalf, and as frustrated as I am.
Im just plain worn out. Im worn out from pain. It really does wear you down. I have so much admiration for those that life lives of constant chronic pain. No wonder they are cranky, depressed, irritated - until you have been in that situation, you cannot fathom it.
But listen, the upside is, that although I am in such pain, I can still walk (albeit very painfully), I am able to drive, work, etc. And I know that one day I will walk again, for pleasure.....
I had hoped that my op was going to be in October. I rang the hospital at the beginning of Sept, and was told in a very curt fashion that "oh no, you will not be having the surgery in October, it will be at least into the New Year"....... I have to say, I sobbed at this news. I had everything pinned on October. Mentally preparing myself. Starting to put in place the backup I would be needing, etc. I was devastated. BUT, as I always do, I pulled myself together and thought right, I just have to get on with it. What more could I do??
I was scheduled for another round of cortisone injections in both feet on the 13/10/14. As before I had the same Doctor doing the injections. Unfortunately, three weeks later, and they didnt work. What a waste.
So, at this stage, where am I at? I now have developed spasming calf muscles - in both legs. I woke up at 5am one morning and my whole left side of my calf was in spasm - as I tried to massage it I could feel it twitching and moving around.... Oh the pain, but while that was doing that, the other side felt like it was going to do the same. That was about two weeks ago, and my calf muscles constantly have felt like they were knotted.... so I made an appointment to have a deep muscle massage with a physio that I use.
I went to him today, and he couldnt believe that I was even able to get around with how knotted and tight my muscles were. He worked on them for over an hour, and now, I sit here with aches but definitely feeling much looser.
At times I feel total despair. I try to hide it from my loved ones, because they already know about the pain and I know they are frustrated and angry on my behalf.
Im terrified that my left foot is going to be too bad to be able to cope with my right one being in a cast and non weight bearing (NWB), as it is already under so much pressure and as bad as my right one. But I know I will cope..... I have no choice. And at this stage, I really and truly just want to get it over and done with. I hate that I am so restricted with what I can do. I hate that I am always so exhausted by evening time. I hate that I cannot do a simple task like the weekly shopping or spend half an hour hoovering my house without having to rest my feet for the rest of the day.
I am so very grateful for the job that I have. It really has saved me mentally as I enjoy doing it and it is a seated position. I have full support from my colleagues and my employers, so I really am blessed.
I often sit and think of how much worse i could be. I could have chronic arthritis, or have a condition that cannot be fixed. BUT knowing that surgery will most definitely give me back some quality of life is what frustrates me. The Irish Government have a lot to answer for. Our health system is in crisis. Too many people are struggling and in severe pain waiting on essential surgery. We have wonderful skilled surgeons who are desperate to perform these surgeries, but due to budgeting constraints, they sit and basically twiddle their thumbs in frustration.
I am thankful for so much in my life. I have wonderful people around me, my family, my partner and my kids, who must be all so sick and tired of hearing my groans and moans, my winces and ouches. My work colleagues who are caring enough to ask how I am.
My GP's who are so angry on my behalf, and as frustrated as I am.
Im just plain worn out. Im worn out from pain. It really does wear you down. I have so much admiration for those that life lives of constant chronic pain. No wonder they are cranky, depressed, irritated - until you have been in that situation, you cannot fathom it.
But listen, the upside is, that although I am in such pain, I can still walk (albeit very painfully), I am able to drive, work, etc. And I know that one day I will walk again, for pleasure.....
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