Well I e-mailed Mr Simpson asking what to do when I have my major attacks, and he responded very quickly with the suggestion or pethedine or ketamine. Now I would just have to figure out how to get to the hospital to have those jabs!!
He also suggested oramorph for the day to day worse pain - so will see if GP will dish it up on Thurs. Its a pain having to ramp up the drugs, but the fent isn'ttouching it at the moment and I really just want to be able to sit on my horse occassionally, play with the puppy and not have to waste so much energy just sitting up.
I had a rotten day yesterday, with pain and incredible exhaustion - turned out I'd missed my tramadol SR dose at 7 am!! Not good.
Alfie the puppy is doing grand - he's learnt sit, down and leave it, and getting there with roll over. His toilet training is a bit hit and miss still - we are still having to take him out all the time - but he sits by the door if he needs to poo, so it will only be a matter of time before he does that for wees as well. He's got his second jab on Thursday, after which we can hit the road with him and get him out and about.
Horses are fine. Really really want to ride though, stamp stamp.
Niki xxx
Tuesday, 7 July 2009
Sunday, 21 June 2009
New Puppy!!!
We found ourselves a new puppy today!! He's gorgeous, lovely, wonderful. It took us a while to make the choice, we were hard pressed to not bring two or three with us! But the last boy was chosen in the end.
He's beautiful. Names are in debate, but Luka/Luqa/Lucca is favourite at the moment.
SO exciting!!!
Niki xxx
He's beautiful. Names are in debate, but Luka/Luqa/Lucca is favourite at the moment.
SO exciting!!!
Niki xxx
Wednesday, 17 June 2009
Sigh
Sorry for the silence again!
Things have been a little frustrating. Suddenly after god knows how many years I seem to have a problem with codeine! Its always been a good drug for me, but I started having a dull aching pain, with one stabbing pain, on my right temple - needless to say this freaked me out as I worried I was becoming bilateral. So having read about re-bound headaches from codeine, I cut out the co-codamol.
So no withdrawal which was nice - but very much increased pain - so at least it was doing something! I went to a new GP (for me, my other one ran away :( ) and as per usual he got bogged down with the whole meds thing and got glassy eyed and freaked. As I was less than my best I ended up coming away with a DX for tramadol 50mg so I can take these rather than the 200mg SR, hoping that the higher profile peaks of this will help. I suspect I'll be back next week. I wish they could just DX me hydrocodone or similar - even methadone, but I think I need a pain expert for that. I'd come off it before the op, but I have to survive the summer first.
Anyway on Monday night I had another really bad do - the one where pure ice on my face hardly interferes with the pain, the 9 1/2 out of 10 pain. It is really intolerable, makes me throw up, and the next day gave me the runs as well. All I can do is survive, even when I don't want to, when I would welcome a knife in my skull. My mum did a bit of Reiki that did help, and I tried to will it away. If you relax it does help a little, but its bloody hard to do that when it hurts so much.
When a similar pain happened to me in the Heath, they kept me in HDU and were frantic trying to get it to go. It responded to something in the end but I can't really remember what it was. I do wonder if calling an ambulance may be an option if it happened again, though I would never cope with a journey. But I always feel that I'm dying for some oxygen when this happens!
All I can be grateful of, is that it NEVER lasts more than 6-8 hours.
Otherwise boys are good, life trundles on, and I had some wonderful friends over for a weekend and it was great (other than another bad do on the Sat pm!). I value my friends and love having them visit, and I'm so grateful for them. They are wonderfully understanding as well.
Niki x
Things have been a little frustrating. Suddenly after god knows how many years I seem to have a problem with codeine! Its always been a good drug for me, but I started having a dull aching pain, with one stabbing pain, on my right temple - needless to say this freaked me out as I worried I was becoming bilateral. So having read about re-bound headaches from codeine, I cut out the co-codamol.
So no withdrawal which was nice - but very much increased pain - so at least it was doing something! I went to a new GP (for me, my other one ran away :( ) and as per usual he got bogged down with the whole meds thing and got glassy eyed and freaked. As I was less than my best I ended up coming away with a DX for tramadol 50mg so I can take these rather than the 200mg SR, hoping that the higher profile peaks of this will help. I suspect I'll be back next week. I wish they could just DX me hydrocodone or similar - even methadone, but I think I need a pain expert for that. I'd come off it before the op, but I have to survive the summer first.
Anyway on Monday night I had another really bad do - the one where pure ice on my face hardly interferes with the pain, the 9 1/2 out of 10 pain. It is really intolerable, makes me throw up, and the next day gave me the runs as well. All I can do is survive, even when I don't want to, when I would welcome a knife in my skull. My mum did a bit of Reiki that did help, and I tried to will it away. If you relax it does help a little, but its bloody hard to do that when it hurts so much.
When a similar pain happened to me in the Heath, they kept me in HDU and were frantic trying to get it to go. It responded to something in the end but I can't really remember what it was. I do wonder if calling an ambulance may be an option if it happened again, though I would never cope with a journey. But I always feel that I'm dying for some oxygen when this happens!
All I can be grateful of, is that it NEVER lasts more than 6-8 hours.
Otherwise boys are good, life trundles on, and I had some wonderful friends over for a weekend and it was great (other than another bad do on the Sat pm!). I value my friends and love having them visit, and I'm so grateful for them. They are wonderfully understanding as well.
Niki x
Sunday, 17 May 2009
Great news!
I'm getting my op after all!! Ok so its not DBS, its Motor Cortex Stimulation instead, but it going to be sooner than waiting and fighting for years to get DBS!
I went to see my Welsh Consultant, Brian Simpson. He's been treating me on and off for years and is always very supportive of my treatment choices. I was hoping he would offer me MCS, but I'd not said that to anyone so it was a bit of a shock for my parents who came along. The stats aren't as good for MCS, but they are not bad, and its a less invasive operation as the electrodes are placed on the dura of the brain not inside it. Its a bigger op as they have to take out a flap of skull rather than use bore holes like DBS, but the chances of being woken up during surgery are lower.
So I'm delighted, scared and happy all at the same time. This op will address the constant pain I have around my eye, temple and bridge of my nose, and is not likely to affect the stabbing pain I have. But I hope that reducing the constant pain will make day to day life more bearable and I will be able to come off some of the drugs and increase my activities, even get a part time job!!
So great news - the waiting list is quite long for these kind of specialist treatments - so it would be minimum 14 weeks and more likely to be over 22 weeks. Whats the betting it'll be either on the weekend of the EE conference, or on my Birthday!
Niki xxx
I went to see my Welsh Consultant, Brian Simpson. He's been treating me on and off for years and is always very supportive of my treatment choices. I was hoping he would offer me MCS, but I'd not said that to anyone so it was a bit of a shock for my parents who came along. The stats aren't as good for MCS, but they are not bad, and its a less invasive operation as the electrodes are placed on the dura of the brain not inside it. Its a bigger op as they have to take out a flap of skull rather than use bore holes like DBS, but the chances of being woken up during surgery are lower.
So I'm delighted, scared and happy all at the same time. This op will address the constant pain I have around my eye, temple and bridge of my nose, and is not likely to affect the stabbing pain I have. But I hope that reducing the constant pain will make day to day life more bearable and I will be able to come off some of the drugs and increase my activities, even get a part time job!!
So great news - the waiting list is quite long for these kind of specialist treatments - so it would be minimum 14 weeks and more likely to be over 22 weeks. Whats the betting it'll be either on the weekend of the EE conference, or on my Birthday!
Niki xxx
Saturday, 16 May 2009
So Sorry!
I've been very lax at posting here, and I'm sorry.
It has been a strange period of time, with Cirrus finally getting over his pneumonia and sorting all my gran's things out. My face has been pretty bad which never helps.
I did manage a short ride on Cirrus which felt amazing, but have not since, I'm really unmotivated at the moment, I guess its all got a bit too much in a way and I'm naval gazing and dealing with each moment as it comes.
On the plus side I've done a whole load of cross stitch!! Hey ho.
Anyway I have momentous news, which I'll deal with in another post in a bit....
Niki xxx
It has been a strange period of time, with Cirrus finally getting over his pneumonia and sorting all my gran's things out. My face has been pretty bad which never helps.
I did manage a short ride on Cirrus which felt amazing, but have not since, I'm really unmotivated at the moment, I guess its all got a bit too much in a way and I'm naval gazing and dealing with each moment as it comes.
On the plus side I've done a whole load of cross stitch!! Hey ho.
Anyway I have momentous news, which I'll deal with in another post in a bit....
Niki xxx
Wednesday, 1 April 2009
By the way...
The funeral and celebration went fine - it was sad, but it was lovely at the same time.
Neither of my cousins came which was very sad - one has a good excuse, the other not one. Hey ho - their loss not knowing their grandmother, she was a wonderful person and a fantastic gran. I, and my siblings are far richer from knowing her.
The vicar was fantastic - not too goddy, and with a real human touch - he read the last bit of Watership Down at the committal, which was very touching. I'm no Christian, though spiritual, and I would be happy to go to his church services!
My face was not brilliant - both the crem and the church were very cold, although I kept my hat on. I was hurting quite bad by the time of the waky bit later - ran home to get more drugs and the dog (Ellie loved Gran, so I felt she should come). In all I had 3 doses of tramadol ON TOP of my usual tramadol, plus 3 lollipops. Yikes. By the evening I was really rough, throwing up and trembling with the pain, very boring. Once I had emptied my stomach and taken a sleeping pill I did get to sleep which did settle my face down. So today I'm exhausted as a result.
Now we have the daunting task of clearing Gran's house - but this is also a fun adventure, as she hid all kinds of things hidden in all kinds of places!!
Niki x
Neither of my cousins came which was very sad - one has a good excuse, the other not one. Hey ho - their loss not knowing their grandmother, she was a wonderful person and a fantastic gran. I, and my siblings are far richer from knowing her.
The vicar was fantastic - not too goddy, and with a real human touch - he read the last bit of Watership Down at the committal, which was very touching. I'm no Christian, though spiritual, and I would be happy to go to his church services!
My face was not brilliant - both the crem and the church were very cold, although I kept my hat on. I was hurting quite bad by the time of the waky bit later - ran home to get more drugs and the dog (Ellie loved Gran, so I felt she should come). In all I had 3 doses of tramadol ON TOP of my usual tramadol, plus 3 lollipops. Yikes. By the evening I was really rough, throwing up and trembling with the pain, very boring. Once I had emptied my stomach and taken a sleeping pill I did get to sleep which did settle my face down. So today I'm exhausted as a result.
Now we have the daunting task of clearing Gran's house - but this is also a fun adventure, as she hid all kinds of things hidden in all kinds of places!!
Niki x
Poorly Cirrus and Fab Doughnut!
Today a day of two halves - Cirrus had the vet to see what was going on in his lungs - answer, definately pnuemonia. Not good. He took a tracheal wash, despite Cirrus constantly coughing, which can make it hard - they don't usually cough constanly while the endoscope is down, so it shows how senstitve his trachea is. There was some blood as well. He's got quite a bit of mucus down there as well despite not ever having a runny nose. Though I read that horses with a productive cough often look as if they are chewing and swallowing after a cough (ick!) which he has been doing.
So when the vet has the results of the cultures and analysis we'll be able to give him the correct antibiotics - kinda hope they are injectable as he's much easier to do that to than try and get him to eat them!! Poor baby seems to be feeling well enough in himself though. I took the opportunity of him still being somewhat sedated to do his feet!!
And the other half of the day was much better - I'd found a cheap shetland bridle on ebay, and found that they also sold mini magic bits, so I got both. I took them out to Doughnut and he was so laid back I ended up bitting him for the first time! He was fab - put the bridle on in bits and he accepted it very well, then I led him (on the headcollar) up to the house to show everyone how grown up he was - and back. He was mouthing it as you would expect but not fighting it or disturbed by it - happily thinking he should be allowed to eat the grass! This is him:
So proud of him! I'll leave it a day or two, then do it again in an equally casual way - seems to be the way to do things with Do, just assume he's going to be fine (while keeping a weather eye out of course). His owner was worried that he would be afraid of big blokes, but he's been totally happy with my dad and Alex, my BIL - though both have nice friendly aura's even though they are big men. I can imagine he'd be different with someone less approachable.
So good day in its ways - at least we know more about what is wrong with Cirrus (and I'm glad I did call the vet back in, not that anybody really could ignore such a persistant cough, and Doughnut made it special with his achievement.
So when the vet has the results of the cultures and analysis we'll be able to give him the correct antibiotics - kinda hope they are injectable as he's much easier to do that to than try and get him to eat them!! Poor baby seems to be feeling well enough in himself though. I took the opportunity of him still being somewhat sedated to do his feet!!
And the other half of the day was much better - I'd found a cheap shetland bridle on ebay, and found that they also sold mini magic bits, so I got both. I took them out to Doughnut and he was so laid back I ended up bitting him for the first time! He was fab - put the bridle on in bits and he accepted it very well, then I led him (on the headcollar) up to the house to show everyone how grown up he was - and back. He was mouthing it as you would expect but not fighting it or disturbed by it - happily thinking he should be allowed to eat the grass! This is him:
So proud of him! I'll leave it a day or two, then do it again in an equally casual way - seems to be the way to do things with Do, just assume he's going to be fine (while keeping a weather eye out of course). His owner was worried that he would be afraid of big blokes, but he's been totally happy with my dad and Alex, my BIL - though both have nice friendly aura's even though they are big men. I can imagine he'd be different with someone less approachable.
So good day in its ways - at least we know more about what is wrong with Cirrus (and I'm glad I did call the vet back in, not that anybody really could ignore such a persistant cough, and Doughnut made it special with his achievement.
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