I received a very nice email which complimented me on this blog and how interesting it was (I hope that it is going to get even more so very shortly!). The sender also said that sometimes I seemed a bit down and grumpy but "now I understand that it's probably from the pain you're suffering"
That sparked in me a little rant in general about how people in pain are perceived.
Now that I have a mouthpiece to write exactly what I want to I am going to detail what it is like to be in chronic pain and yet try to live a constructive and fulfilling life. Doing this Career Break is important to me, yet there could possibly be accusations of appearing fully-abled but having disabled "privileges" (which is the attitude I have had from people all my life).
When I put up the description of what it is like to have the chronic pain and the reasons why I am grumpy sometimes (which I thought I had conquered and could hide better) I felt that people could see exactly what it is like. Yes, I might be doing the travelling, but I still have to deal with the pain and frustrations of the limitations of not doing what I want (can't do a lot of tourist walking in cities for example, etc). I may possibly have a flare-up of TC pain and a huge swelling of my feet due to the EM, any time any place, and that could throw my plans out for days/weeks.
I do envy travellers who don't have to think of medical problems, but as I have said all along (and all through my life), this TC, EM and my feet will not stop me doing things that I want to do and experience, and I will get through somehow.
5 weeks today I will be at LHR!
Wednesday, 17 October 2007
Tuesday, 9 October 2007
Flight tickets shock
I had the most horrible day last Wednesday 3rd Oct - when I discovered that the flight tickets (the most basic things to get me out of here) had been booked in the wrong name.
I cannot believe that I got SO close to not being able to follow my dreams, and getting out of here. Just think of all the bookings I have made, all the hard work of earning enough money to pay for all the accomodation, the car hire, the Kiwi Experience, the India teaching etc etc - all of it would have fallen over like a pack of cards.
Thankfully as I was 7 weeks away from departure, the flight guys could cancel and rebook me on the exact same flights, so I haven't lost anything, but still......
Wednesday was not a good day :(
I cannot believe that I got SO close to not being able to follow my dreams, and getting out of here. Just think of all the bookings I have made, all the hard work of earning enough money to pay for all the accomodation, the car hire, the Kiwi Experience, the India teaching etc etc - all of it would have fallen over like a pack of cards.
Thankfully as I was 7 weeks away from departure, the flight guys could cancel and rebook me on the exact same flights, so I haven't lost anything, but still......
Wednesday was not a good day :(
Tuesday, 11 September 2007
The Deed is Done
Yes, the deed is done!!!!
I have paid the final balance on my trip and it is all official and SO EXCITING!!! 10 weeks today I will have left work for 6 months and will be packing the last bits in the bags to fly on the Wednesday.
Departure seemed to be close this weekend when I went shopping for "India stuff". Mossie net, sleeping bag, first aid kit, and for Australia swimming costumes, summer clothes for winter time
I have also got a place to stay for every night I am away now - having just finalised the South-West Australia car hire and accommodation today. Many thanks to J for all help with that - what would I do without you :)
The only things I have to do now is get my ETA for Oz and the Indian visa, but the latter can't be done till early November with a trip to the big smoke to visit the Indian embassy. THEN I will feel that I am almost on my way
Speak later
I have paid the final balance on my trip and it is all official and SO EXCITING!!! 10 weeks today I will have left work for 6 months and will be packing the last bits in the bags to fly on the Wednesday.
Departure seemed to be close this weekend when I went shopping for "India stuff". Mossie net, sleeping bag, first aid kit, and for Australia swimming costumes, summer clothes for winter time
I have also got a place to stay for every night I am away now - having just finalised the South-West Australia car hire and accommodation today. Many thanks to J for all help with that - what would I do without you :)
The only things I have to do now is get my ETA for Oz and the Indian visa, but the latter can't be done till early November with a trip to the big smoke to visit the Indian embassy. THEN I will feel that I am almost on my way
Speak later
Saturday, 18 August 2007
Money
I guess one of the worst fears for anyone taking a CB is money - or the lack of it! 6 months without a regular income is SCARY!!!!! But I think I am going to be OK. The benefit of paying for things (like accommodation and transport) up front is that anything I earn now is for ME :).
I am mentioning the CB to more people and 2 girls at my PT job today got really excited on my behalf! So hello Gabby and Alex - thanks for your support and enthusiasm, as talking to you and people like you are making it more and more exciting, despite the worries and fears.
The next 2 weeks on vacation from my main place of work are going to be full of paperwork and plans, getting everything straight before the final run to November.
Hello to Jason, by the way. Missing our conversations about non-EM stuff :)
Speak soon
I am mentioning the CB to more people and 2 girls at my PT job today got really excited on my behalf! So hello Gabby and Alex - thanks for your support and enthusiasm, as talking to you and people like you are making it more and more exciting, despite the worries and fears.
The next 2 weeks on vacation from my main place of work are going to be full of paperwork and plans, getting everything straight before the final run to November.
Hello to Jason, by the way. Missing our conversations about non-EM stuff :)
Speak soon
Tuesday, 14 August 2007
Latest update
Another month goes by and only 13.5 weeks till I leave :)
OK: quick medical update: saw my consultant last week and the good news is I haven't done any permanent damage to my spinal nerves. The fact is even though I can do a little bit of running (well shuffling, really) I am NOT ALLOWED TO DO IT (just remind me of that when I try next time!). The nerves are subject to neurodyspraxia (mechanical damage) and I have to be careful with activities - although I can walk OK and keep fit now, which is big progress from last month. Such is life, living with a previously tethered cord, and associated disabilities!!
CB news: booked the last of the accommodation in Adelaide and Auckland, and booked my place on the Kiwi Experience bus. New Zealand looks so beautiful with so much to do...
Got a new camera at the weekend - must learn how to put up photos on here for when I am away! Let's try this one
OK: quick medical update: saw my consultant last week and the good news is I haven't done any permanent damage to my spinal nerves. The fact is even though I can do a little bit of running (well shuffling, really) I am NOT ALLOWED TO DO IT (just remind me of that when I try next time!). The nerves are subject to neurodyspraxia (mechanical damage) and I have to be careful with activities - although I can walk OK and keep fit now, which is big progress from last month. Such is life, living with a previously tethered cord, and associated disabilities!!
CB news: booked the last of the accommodation in Adelaide and Auckland, and booked my place on the Kiwi Experience bus. New Zealand looks so beautiful with so much to do...
Got a new camera at the weekend - must learn how to put up photos on here for when I am away! Let's try this one
Thursday, 5 July 2007
Pain
One thing I perhaps haven't made clear on this blog so far, is how much pain I live with, and how this so dominates any plans for travel.
I have lived with chronic pain, 24/7, since 1999. It is due to tethered cord syndrome, accompanied by spondylolisthesis (vertebral slippage), underlying invisible spinal and visible foot deformities, acquired Complex Regional Pain Syndrome (CRPS) and erythromelalgia. It takes several forms: nerve pain in back and legs, bone pain in ankles, knees, sacrum and back, and all forms of pain in feet. It is a grumbling type of pain, which flares up regularly into unremitting, uncontrollable-by-drugs, depressing, despairing pain, during which I want to curl up and stay in bed, but can't as I still have a life to lead. I also have the erythromelalgia which is caused by nerve damage in my back, which causes my feet and ankles to swell, with yet more pressurised, pounding-headache type of pain, which is again uncontrollable and incurable.
Since my spinal surgery in 2001 (OMG, nearly 6 years ago!) the chronic pain dominates my life. I can never escape it - as soon as I get up in the morning it is there, as soon as I put a foot to the floor it is there, as soon as I drop to my knees in my house to get around, it is there. People think that just because I work 2 jobs, (mostly) keep a smile on my face, am actually walking, I am "fixed", that the spinal surgery did its job and the pain disappeared. If only.....
I got to the point in 2003 that I felt fit enough that I could do the Race for Life, and indeed I did. No problems, just the expected excruciating ankle pain and muscular weariness, but no long term problems at all.
I bethought it of me to do the same this year, on May 20th. Baaaad idea - I think I have acquired a long-term, permanent, debilitating, nerve-damage injury in my Right leg (the strongest of the two). Why, why, why did I do that stupid race? Why didn't I follow my instincts and not do the bl....dy race? I just pray that 6 years of post-op progress has not been wiped out in 1-second of running in that stupid Race.
This is another reason why I am feeling so down today. The pain from the injury is not getting any better. I tried to hop, skip, & jump across a road today, and nearly collapsed with the pain in my leg, and the fact it didn't have any power and could not support my (little) weight. Even before my surgery, and even when I was deteriorating fast, I could still run - now that is totally gone. I can't run one little bit, which is so depressing. It also makes me feel very vulnerable, as I couldn't get out of danger if danger presents itself on my travels.
I am getting a referral back to my nsg, but what can he do? This is my injury, I can't face the trauma of any more major surgery, and anyway, scar tissue would make things worse and not necessarily cure the problem.
I just hope (ever optimistic when faced with TCS issues and usually disappointed, I might add) that this injury is not as drastic as I am fearing. The CB will be dominated by pain - I don't want anything else to go wrong to spoil the travels.......
Hopefully I will be more up-beat next time. Speak soon
I have lived with chronic pain, 24/7, since 1999. It is due to tethered cord syndrome, accompanied by spondylolisthesis (vertebral slippage), underlying invisible spinal and visible foot deformities, acquired Complex Regional Pain Syndrome (CRPS) and erythromelalgia. It takes several forms: nerve pain in back and legs, bone pain in ankles, knees, sacrum and back, and all forms of pain in feet. It is a grumbling type of pain, which flares up regularly into unremitting, uncontrollable-by-drugs, depressing, despairing pain, during which I want to curl up and stay in bed, but can't as I still have a life to lead. I also have the erythromelalgia which is caused by nerve damage in my back, which causes my feet and ankles to swell, with yet more pressurised, pounding-headache type of pain, which is again uncontrollable and incurable.
Since my spinal surgery in 2001 (OMG, nearly 6 years ago!) the chronic pain dominates my life. I can never escape it - as soon as I get up in the morning it is there, as soon as I put a foot to the floor it is there, as soon as I drop to my knees in my house to get around, it is there. People think that just because I work 2 jobs, (mostly) keep a smile on my face, am actually walking, I am "fixed", that the spinal surgery did its job and the pain disappeared. If only.....
I got to the point in 2003 that I felt fit enough that I could do the Race for Life, and indeed I did. No problems, just the expected excruciating ankle pain and muscular weariness, but no long term problems at all.
I bethought it of me to do the same this year, on May 20th. Baaaad idea - I think I have acquired a long-term, permanent, debilitating, nerve-damage injury in my Right leg (the strongest of the two). Why, why, why did I do that stupid race? Why didn't I follow my instincts and not do the bl....dy race? I just pray that 6 years of post-op progress has not been wiped out in 1-second of running in that stupid Race.
This is another reason why I am feeling so down today. The pain from the injury is not getting any better. I tried to hop, skip, & jump across a road today, and nearly collapsed with the pain in my leg, and the fact it didn't have any power and could not support my (little) weight. Even before my surgery, and even when I was deteriorating fast, I could still run - now that is totally gone. I can't run one little bit, which is so depressing. It also makes me feel very vulnerable, as I couldn't get out of danger if danger presents itself on my travels.
I am getting a referral back to my nsg, but what can he do? This is my injury, I can't face the trauma of any more major surgery, and anyway, scar tissue would make things worse and not necessarily cure the problem.
I just hope (ever optimistic when faced with TCS issues and usually disappointed, I might add) that this injury is not as drastic as I am fearing. The CB will be dominated by pain - I don't want anything else to go wrong to spoil the travels.......
Hopefully I will be more up-beat next time. Speak soon
Monday, 2 July 2007
...and more :)
Yep, I spent more money this morning and booked my New Zealand "adventure". Instead of using the Magic Bus (of which the information was in short supply and not well explained on their website, and I had no reply to my emails!!) I am going to travel with Kiwi Experience - on a bus, but with lots of trips and fun-things included + a free intro to Auckland. I guess KE is a bit like Trek America and Let's Trek in that the drivers know an enormous amount about their country and so the travellers can benefit from that as well as getting cheap travel round the country.
That's all the bookings I need now. Phew! My credit card can take a rest for a bit!! The rest of it is PAYG and as needed.
I am getting so excited about this; even recounting it to a friend at lunchtime I could feel the excitement building, and sharing it makes it more real and coming-up-soon :)
20 weeks and counting.....
That's all the bookings I need now. Phew! My credit card can take a rest for a bit!! The rest of it is PAYG and as needed.
I am getting so excited about this; even recounting it to a friend at lunchtime I could feel the excitement building, and sharing it makes it more real and coming-up-soon :)
20 weeks and counting.....
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