My recent adjustment really seemed to help - I mean, it still hurt like hell, but I was on less oramorph and maybe even only four fent lollipops - but it was distinctly better. However it is getting progressively worse again, which is odd and not easy to understand. As I have understood it before, my surgeon intimated that once you find a combination of tweeks that work, they work forever - this does not seem to be my experience of it, I have several times had a good adjustment and then it gets worse again! Its all a bit like baseball bats.
Otherwise life is quietly trotting on - not being that well right now means that the horses just stand in the field - I do a bit of clicker training with them and do get them in when they need it to have potions applied. Jenni comes every few weeks and we do great things and I feel inspired for about 24 hours and then it goes into the too hard to do today box again which really makes me sad. My cross stitching is going mad - I have so many things ready to start its quite an excitement.
I wonder sometimes if I am stacking them up so I have something to carry on for. Very morbid thought, but the future is less spikey if its in terms of cross stitch projects!!!
One of these days I'll do a blog on my cross stitches :)
Niki xxxx
Thursday, 3 March 2011
Saturday, 19 February 2011
So bad!
Ok, so I am still alive, honest!!
I've been so bad not updating this - volunteering for the TNA took up so much of my spare energy. I've finished volunteering for them now so I can finally update this!
I do have my motor cortex stimulator now - at times its been really positive and at others very depressing. I've had a really bad patch over Nov to Feb, but my last adjustment has made a positive effect so that is good.
I'll write about the op and the adjustments soon.
Niki x
I've been so bad not updating this - volunteering for the TNA took up so much of my spare energy. I've finished volunteering for them now so I can finally update this!
I do have my motor cortex stimulator now - at times its been really positive and at others very depressing. I've had a really bad patch over Nov to Feb, but my last adjustment has made a positive effect so that is good.
I'll write about the op and the adjustments soon.
Niki x
Sunday, 8 November 2009
Tuesday, 3 November 2009
MRI Scan tomorrow!
Well finally have had a bit more confirmation - I have an MRI scan tomorrow at 5pm, and then I have to ring the ward on Monday morning to find out the time to come in. Hopefully there will not be any argument about beds.
I hate MRI scans. I'd almost rather have the operation twice!! I think I just focus all my nerves to that one thing that is unpleasant in the first place. I know it has to be done, and all that, but its a simple thing to hate without getting totally overwhelmed by it all. I won't allow myself to feel nerves or fear about the other stuff. It all goes in the very big dark cupboard in my mind - not a place to investigate!!
But I have found one, solitary, small pill of valium in the bottom of my drug draw, so that will help! Rescue remedy will not cut the mustard.
I am a bit concerned that its a normal brain MRI though - not a functional one - I guess they know what they are doing but I wonder how they can find the motor cortex parts for my face without anything lighting up or moving? Hey ho.
I have a dog client coming on Friday morning which will be lovely, he's called Barney and he's a special dog.
Niki x
I hate MRI scans. I'd almost rather have the operation twice!! I think I just focus all my nerves to that one thing that is unpleasant in the first place. I know it has to be done, and all that, but its a simple thing to hate without getting totally overwhelmed by it all. I won't allow myself to feel nerves or fear about the other stuff. It all goes in the very big dark cupboard in my mind - not a place to investigate!!
But I have found one, solitary, small pill of valium in the bottom of my drug draw, so that will help! Rescue remedy will not cut the mustard.
I am a bit concerned that its a normal brain MRI though - not a functional one - I guess they know what they are doing but I wonder how they can find the motor cortex parts for my face without anything lighting up or moving? Hey ho.
I have a dog client coming on Friday morning which will be lovely, he's called Barney and he's a special dog.
Niki x
Sunday, 1 November 2009
a week and a bit to go....
allegedly anyway!
Things are ok, head been bad some days, and good others. Have done quite a lot in the last few weeks, regardless.
Cirrus has had his full clip and looks smart but holey where he has sores from a bad attack of Sweet itch. Poor man. He's also worrying me with several patches of white line sepparation on his feet which could be a source for an abcsess. He's not been quite sound in front for a week. Beautiful timing of course.
Been going to church which has been interesting. Not sure on the religious stuff, but really enjoy the sense of community, and everyone is so welcoming and sweet. I don't like the Holy Communion thing though, apart from the fact I can't drink the wine, the whole idea is slightly distasteful to me. The idea of sharing a meal with people is nice however, so am ambiguious.
Am nervous. Am nervous that it won't go ahead. Am nervous about the fMRI. Am nervous about the operation. Am nervous about how much things could change in the next 2 weeks. Despite all, I'd rather not die! I wish I could really get on board with the hope, but I'm way to scared to get on that train again - I've been thrown off it so many times by now.
Niki x
Things are ok, head been bad some days, and good others. Have done quite a lot in the last few weeks, regardless.
Cirrus has had his full clip and looks smart but holey where he has sores from a bad attack of Sweet itch. Poor man. He's also worrying me with several patches of white line sepparation on his feet which could be a source for an abcsess. He's not been quite sound in front for a week. Beautiful timing of course.
Been going to church which has been interesting. Not sure on the religious stuff, but really enjoy the sense of community, and everyone is so welcoming and sweet. I don't like the Holy Communion thing though, apart from the fact I can't drink the wine, the whole idea is slightly distasteful to me. The idea of sharing a meal with people is nice however, so am ambiguious.
Am nervous. Am nervous that it won't go ahead. Am nervous about the fMRI. Am nervous about the operation. Am nervous about how much things could change in the next 2 weeks. Despite all, I'd rather not die! I wish I could really get on board with the hope, but I'm way to scared to get on that train again - I've been thrown off it so many times by now.
Niki x
Saturday, 3 October 2009
A date!!
FINALLY got a date for the MCS operation - 10th November.
Its later than we thought, but the surgeon wants the right team, and to be around afterwards as it is such a rare operation. But it's brilliant having a date to focus on and to stop feeling like a crazy person never knowing if today is the day!
Today I treated a horse in the next village - he has muscular stiffness so Bowen is brilliant for him - although he is a cob and black, he reminded me a lot of Fizz, so that was happysad. I've lent the owner my libra trek saddle, as I think his own saddle is causing problems with his back. Its great treating this horse as I get my aromatherapy massages in return!!
Head has been rotten today - but the wind always jazzes it up.
Ben came back from the US with lots of chocolate - so I've discovered peanutbutter cups - OMG they are lovely, though even I can only eat 2 at a time!
So I feel as if I have a spare month now - a clear birthday, and can get Cirrus clipped a bit later - and even ride him a bit!!
Niki x
Its later than we thought, but the surgeon wants the right team, and to be around afterwards as it is such a rare operation. But it's brilliant having a date to focus on and to stop feeling like a crazy person never knowing if today is the day!
Today I treated a horse in the next village - he has muscular stiffness so Bowen is brilliant for him - although he is a cob and black, he reminded me a lot of Fizz, so that was happysad. I've lent the owner my libra trek saddle, as I think his own saddle is causing problems with his back. Its great treating this horse as I get my aromatherapy massages in return!!
Head has been rotten today - but the wind always jazzes it up.
Ben came back from the US with lots of chocolate - so I've discovered peanutbutter cups - OMG they are lovely, though even I can only eat 2 at a time!
So I feel as if I have a spare month now - a clear birthday, and can get Cirrus clipped a bit later - and even ride him a bit!!
Niki x
Tuesday, 29 September 2009
circling the drain....
STILL no date......
Went to the GP today, saw a crappy locum. Since I started the cyclizine and ondancetron (anti-emetics) I've had ulcers in my nose, and then about a month ago I started getting painful spots in my nose that took ages to heal. When the two last ones healed, and I started getting another one straight away I was persuaded to go to the GP to get cream and a swab to check for a staph infection - don't really want that when you are about to get brain surgery!
Locum was a pain, saying they'd do that in the hospital if they were worried, but I can't risk them sending me home! So he capitulated, after he talked me down from the ceiling. Suprised myself at how hysterical I came very quickly!
Cirrus has rubbed his legs, face and shoulder raw, not happy at all poor boy. I've clipped the places out and potioned them. I hope they recover really quickly.
Went to church on Sunday again - I asked a neighbour for a lift. It was lovely service, a harvest one. It's about the only place I feel peaceful and less in pain, in church, which is one massive shock for me! I was given the definate message several months ago that I had to start going to church, which is strange for a non-believer, but I don't tend to argue for too long with such a dictate from my guides!
Am going out on Sunday evening with some friends - a rare and fun thing to do!
Niki x
Went to the GP today, saw a crappy locum. Since I started the cyclizine and ondancetron (anti-emetics) I've had ulcers in my nose, and then about a month ago I started getting painful spots in my nose that took ages to heal. When the two last ones healed, and I started getting another one straight away I was persuaded to go to the GP to get cream and a swab to check for a staph infection - don't really want that when you are about to get brain surgery!
Locum was a pain, saying they'd do that in the hospital if they were worried, but I can't risk them sending me home! So he capitulated, after he talked me down from the ceiling. Suprised myself at how hysterical I came very quickly!
Cirrus has rubbed his legs, face and shoulder raw, not happy at all poor boy. I've clipped the places out and potioned them. I hope they recover really quickly.
Went to church on Sunday again - I asked a neighbour for a lift. It was lovely service, a harvest one. It's about the only place I feel peaceful and less in pain, in church, which is one massive shock for me! I was given the definate message several months ago that I had to start going to church, which is strange for a non-believer, but I don't tend to argue for too long with such a dictate from my guides!
Am going out on Sunday evening with some friends - a rare and fun thing to do!
Niki x
Wednesday, 23 September 2009
teetering on the brink...
STILL no date!! Its driving me slowly mad, the not knowing. Hey ho.
Otherwise things are ok - my sister went off to Uni which is great for her, but I miss her! My brother is on a business trip in the US.
My life is revolving around the date for the op - the closer any surgery gets for me, the more introspective and insular I get - I guess its just a reaction to the fear, the pain and the concept of your mortality. I even went to church this week!
Niki x
Otherwise things are ok - my sister went off to Uni which is great for her, but I miss her! My brother is on a business trip in the US.
My life is revolving around the date for the op - the closer any surgery gets for me, the more introspective and insular I get - I guess its just a reaction to the fear, the pain and the concept of your mortality. I even went to church this week!
Niki x
Thursday, 17 September 2009
Bad 48hours
Have had an awful 48 hours - usually bad do's don't last that long,but I'm struggling to throw this one off. The morphine and fent combo did bring it down to an 8, but if I'd known it was going to last that long I may have been better off looking at a hospital visit...
The news from the hospital is still that they are trying to get me in in the last week in September, or first week in October - notice we are creeping Christmas-ward. They know I'm having a rough time though and I am a priority case.
Not that the operation is necessarily going to address the pain straight away - I could end up in a worse place for a while, but I'm trying not to think about that.
So not a lot has been happening, not been riding, last time I brought the horses in they ran off with a herd of sheep!! It was a bit of a nightmare, but I discovered my priorities as I saw my mum disappear under a boucing shetland pony followed by a herd of bouncing sheep! Thankfully she was ok, though scrapped up, and I was able to belt off after the horses, whose appearance shocked the farmer, but he did stop them going further along the lane. All well in the end.
Niki x
The news from the hospital is still that they are trying to get me in in the last week in September, or first week in October - notice we are creeping Christmas-ward. They know I'm having a rough time though and I am a priority case.
Not that the operation is necessarily going to address the pain straight away - I could end up in a worse place for a while, but I'm trying not to think about that.
So not a lot has been happening, not been riding, last time I brought the horses in they ran off with a herd of sheep!! It was a bit of a nightmare, but I discovered my priorities as I saw my mum disappear under a boucing shetland pony followed by a herd of bouncing sheep! Thankfully she was ok, though scrapped up, and I was able to belt off after the horses, whose appearance shocked the farmer, but he did stop them going further along the lane. All well in the end.
Niki x
Saturday, 29 August 2009
No news is good news?
Have no further movement on the op front - hey ho.
Have had a pretty poor week, and am finding increasingly that the addition of morphine to my regime is very detrimental to my memory, concentration and composure! I get very confused very easily, especially if a few things are going on at the same time. I forget things and things I have been told (allegedly!). But it does seem to help the pain, so there we go.
Cirrus did have an abscess by the way!
Alfie is fabulous. Ellie is cool, and Murphy is great! We are taking them to another dog show tomorrow so hopefully they will be on form.
In some ways its hard to have a blog, as every day is so mind numbingly the same, tedious and painful its hard to document it. I'm struggling to be upbeat and not to get into a depression though I'm pretty darn good at not thinking about negative things! At least I have a structure to the day so I don't stay in bed. I'm really existing in a limbo until the operation. I know it may not work, or may take a long time to find the right stimulation parameters to work, but I have to be hopeful. However every other procedure has been a failure eventually and I have coped, and the drugs have always been pretty useless as well, so the last 7 years have taught me how to deal with disapointment I guess. But I still have hope, and while I have that, I will fight.
Anyway, just found a film about MSC on line - here:
http://www.medicalvideos.us/videos-941-Motor-cortex-stimulation-for-Chronic-pain
Niki x
Have had a pretty poor week, and am finding increasingly that the addition of morphine to my regime is very detrimental to my memory, concentration and composure! I get very confused very easily, especially if a few things are going on at the same time. I forget things and things I have been told (allegedly!). But it does seem to help the pain, so there we go.
Cirrus did have an abscess by the way!
Alfie is fabulous. Ellie is cool, and Murphy is great! We are taking them to another dog show tomorrow so hopefully they will be on form.
In some ways its hard to have a blog, as every day is so mind numbingly the same, tedious and painful its hard to document it. I'm struggling to be upbeat and not to get into a depression though I'm pretty darn good at not thinking about negative things! At least I have a structure to the day so I don't stay in bed. I'm really existing in a limbo until the operation. I know it may not work, or may take a long time to find the right stimulation parameters to work, but I have to be hopeful. However every other procedure has been a failure eventually and I have coped, and the drugs have always been pretty useless as well, so the last 7 years have taught me how to deal with disapointment I guess. But I still have hope, and while I have that, I will fight.
Anyway, just found a film about MSC on line - here:
http://www.medicalvideos.us/videos-941-Motor-cortex-stimulation-for-Chronic-pain
Niki x
Tuesday, 4 August 2009
Nearer a surgery date..
Well apparently I'm in the place on the list which should be done before end of August, BUT, they are running a month behind - which means I *should* be done before end of September.
So movement of a kind. Oh and the notice could be a day! Like, come in tomorrow. Yikes.
Bit spooked about it today to be honest - mainly the MRI again! The tests will all be done in the hospital the day before the op, so no trekking up and down to and back from Cardiff.
Morphine and fentanyl combo is ok, better than singley. Pain is not great, at a level where its hard to do more than the basics, plus the drugs make me somewhat apathetic. Added to that Cirrus had a mystery lameness recently so he's not been right to ride. I AM bringing them in tomorrow to trot him up on a hard surface and check, plus trim his feet. And dectomax him. And cuddle him.
Got a Seth Lakeman gig on Friday, and even better, my friend Helen (Helen from Evesham not Windsor) is coming as well! Very much looking forward to seeing her again.
Alfie is doing really well - he's huuuuuuge now - and very clever. I've mislaid the lead that connects my phone to the PC, actually, make that not sure where the lead is and can't be bothered to look as yet.... so no pictures as yet.
Ben took some fantastic pictures of Cirrus - looking very good for once, other than his sore face - but one is particularly good - here it is!
Niki x
So movement of a kind. Oh and the notice could be a day! Like, come in tomorrow. Yikes.
Bit spooked about it today to be honest - mainly the MRI again! The tests will all be done in the hospital the day before the op, so no trekking up and down to and back from Cardiff.
Morphine and fentanyl combo is ok, better than singley. Pain is not great, at a level where its hard to do more than the basics, plus the drugs make me somewhat apathetic. Added to that Cirrus had a mystery lameness recently so he's not been right to ride. I AM bringing them in tomorrow to trot him up on a hard surface and check, plus trim his feet. And dectomax him. And cuddle him.
Got a Seth Lakeman gig on Friday, and even better, my friend Helen (Helen from Evesham not Windsor) is coming as well! Very much looking forward to seeing her again.
Alfie is doing really well - he's huuuuuuge now - and very clever. I've mislaid the lead that connects my phone to the PC, actually, make that not sure where the lead is and can't be bothered to look as yet.... so no pictures as yet.
Ben took some fantastic pictures of Cirrus - looking very good for once, other than his sore face - but one is particularly good - here it is!
Niki x
Tuesday, 14 July 2009
Morphine not so hot
Well its not going to make a dent in the bad pain. Which is pants. On Sunday I had a bad day - not a really bad day, more a 7. I took several doses of 10mls of oramorph and then had a couple of fentanyl lollipops. The anti-emetics worked. The pain wasn't decreased much at all. No really bad side effects, just sleepy and stoned a bit.
Antonia (one of my oldest and bestest friends) came over with her dad and her son Morgan - so that was lovely - I don't see her as much as I would like as she lives in North Wales. She's special people to me. Anyhow I was able to cope through her visit, and showed her Doughnuts tricks and Cirrus' practical CT applications. Then I slept through most of the rest of the day.
So this shows me that on a really bad do, the fent/oramorph combo is NOT going to work. This still leaves me with the transport issue.
Otherwise things are ok. Alfie is growing apace, and is so smart. He's totally lovely. Murphy is a little more accepting of him, and Ellie really likes him now, unless he steals her bone. He is happy to share it with her, but she's not that happy with it!
Horses are fab, and I'm doing a great new cross stitch. Buying them from someone on ebay who must think I'm a total freak for buying so many!! Thank the gods that they are cheap.
Niki x
Antonia (one of my oldest and bestest friends) came over with her dad and her son Morgan - so that was lovely - I don't see her as much as I would like as she lives in North Wales. She's special people to me. Anyhow I was able to cope through her visit, and showed her Doughnuts tricks and Cirrus' practical CT applications. Then I slept through most of the rest of the day.
So this shows me that on a really bad do, the fent/oramorph combo is NOT going to work. This still leaves me with the transport issue.
Otherwise things are ok. Alfie is growing apace, and is so smart. He's totally lovely. Murphy is a little more accepting of him, and Ellie really likes him now, unless he steals her bone. He is happy to share it with her, but she's not that happy with it!
Horses are fab, and I'm doing a great new cross stitch. Buying them from someone on ebay who must think I'm a total freak for buying so many!! Thank the gods that they are cheap.
Niki x
Saturday, 11 July 2009
Morphine....
doesn't seem to be any better than fentanyl - though I have taken a smaller dose. Just thought I'd try it and see. It is making me a bit more stoned though.
Alfie went for his first walk today - and discoved sheep poo! oh joy (for him...). He fell asleep on Ellie today which was very sweet - I did take pics, will put them up soon.
Actually, I had the last dose of morphine at 8.40 and right now at 9.15 I'm not in much pain at all - maybe it does work!
Niki xxx
Alfie went for his first walk today - and discoved sheep poo! oh joy (for him...). He fell asleep on Ellie today which was very sweet - I did take pics, will put them up soon.
Actually, I had the last dose of morphine at 8.40 and right now at 9.15 I'm not in much pain at all - maybe it does work!
Niki xxx
Friday, 10 July 2009
Got the drugs....
The GP came up trumps and RX'd me the oramorph and a shed load of anti-emetics to allow me to take the oramorph or more lollipops - without them two is my max. Some confusion as to whether the oramorph is for the big do's or if its for the worse day to day pain. I thought it was the latter and the ketamine etc was for the baddies. Still I guess I'll figure it out.
Alfie is ace! He's learning at the speed of light - he's SO clever. He's beautiful as well.
Doughnut had got "bow" down pat - he's doing it all on his own on command now. I'm so proud of him! Cirrus is as wonderful as ever, and is doing fabulously with his sweet itch - the cavelesse cream/gel is miraculous and its a darn shame that it only comes with the feed supplement, so you are let with this weeny tube! Some stupid licencing issue.
Am working hard on a cross stitch at the moment - for a friend's birthday pressie. Its challenging and fun!
Niki x
Alfie is ace! He's learning at the speed of light - he's SO clever. He's beautiful as well.
Doughnut had got "bow" down pat - he's doing it all on his own on command now. I'm so proud of him! Cirrus is as wonderful as ever, and is doing fabulously with his sweet itch - the cavelesse cream/gel is miraculous and its a darn shame that it only comes with the feed supplement, so you are let with this weeny tube! Some stupid licencing issue.
Am working hard on a cross stitch at the moment - for a friend's birthday pressie. Its challenging and fun!
Niki x
Tuesday, 7 July 2009
Response from Mr Simpson
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
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
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
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