I had planned when I got home on Saturday to write an update about my time at Spring Harvest but I'm afraid it is going to have to wait a bit.
PostPals was featured on Russell Howard's Good News on Thursday night and since then the site has been inundated with emails. I am helping out by reading the emails to check they are suitable then passing them onto the pals. At the moment emails are still coming in thick and fast so although we are passing loads on the inbox is over 1000, so my blog will have to wait until things have calmed down slightly. It is great the response we have had and the pals will really benefit from the extra smiles being sent their way.
I'm off to teach at college for a couple of hours tomorrow morning and then am going with Mum to see Dancing on Ice. I've a bit of a thing for Dan Whiston so I hope he's there.
The rest of the week is pretty quiet so I'll have time to carry on working my way through Postpals inbox and hopefully a blog update will follow!
Monday 19 April 2010
Saturday 10 April 2010
Just a quick update
I haven't had much of a chance to update this week so this is just a quick post to bring you up to speed.
The rest of my stay on David Ferrier was pretty uneventful and I managed to have all of my DHE treatment. I got home on Saturday afternoon and spent until Wednesday in bed feeling really awful. I thought at one point that the DHE had not worked. I finally began feeling better on Thursday and am now feeling pretty good. The migraine and DHE are now in remission again so I've just got to put up with the SUNA which is bearable.
I always try and make the most of my painfree time so am going away tomorrow to Butlins Skegness. Every year at this time there is a christian gathering/conference there with speakers, bands etc. I've been for the past three years with people from my Mum and Dad's church but this year am going on my own. I'm not too worried about that as you get to meet loads of people there. I'm looking forward to the break and being near the sea. I'm not looking forward to the journey though as there is loads of engineering works but I'm sure I'll get there eventually.
I'll write about it when I get home and I also want write a bit more about more hospital stay and some of the amazing people I met.
The rest of my stay on David Ferrier was pretty uneventful and I managed to have all of my DHE treatment. I got home on Saturday afternoon and spent until Wednesday in bed feeling really awful. I thought at one point that the DHE had not worked. I finally began feeling better on Thursday and am now feeling pretty good. The migraine and DHE are now in remission again so I've just got to put up with the SUNA which is bearable.
I always try and make the most of my painfree time so am going away tomorrow to Butlins Skegness. Every year at this time there is a christian gathering/conference there with speakers, bands etc. I've been for the past three years with people from my Mum and Dad's church but this year am going on my own. I'm not too worried about that as you get to meet loads of people there. I'm looking forward to the break and being near the sea. I'm not looking forward to the journey though as there is loads of engineering works but I'm sure I'll get there eventually.
I'll write about it when I get home and I also want write a bit more about more hospital stay and some of the amazing people I met.
Thursday 1 April 2010
Life on David Ferrier
It's been a bit of a crazy week so please bear with me if this turns into a long post. I've divided it into days to make it easier to read.
Monday
I was up early on Monday ready for the transport to bring me to London. They say to be ready 3 hours before admission time so I was ready to go by 7 and by five past seven the ambulance was at the door. I was pleased cause I thought we would be at the hospital early and I could get settled on the ward before treatment began. That did not quite happen, we had to pick up in Barnet, Edgware and Watford so did not get here till five past ten. I was pretty tired when I got up to the ward so was a bit fed up to find that the ward was full and there were no spare beds. So I and two other patients in for DHE spent the next two and a half hours in the day room. We finally got our beds at 1 ish. Our treatment is meant to start at 2.30 but due to delays in beds, shortage of Drs etc we were told we would not start till 10.30 in the evening. I was a bit fed up but passed the time talking to the nurses I know from previous visits, getting to know the people in my bay and meeting up with people I have been talking to on the internet.
My first treatment started at 10.30 but I had only got halfway through it when my cannula blocked. I have bad veins anyway but the DHE treatment is pretty toxic and shuts your veins right down. Luckily the night nurse was a good shot and got one in first time so I could finish the first treatment. I finally managed to settle down to sleep at 1.30 - it had been very long day.
Tuesday
I didn't sleep great the first night - the ward is like Blackpool illuminations at night with lights everywhere. I have an eye mask but it does not block it all out. I was woken up at 7 for the next treatment and felt halfway through that the cannula was blocking again. I finished the treatment and got one of the nurses to check it. She reckoned it was okay although it was getting very painful. It was pretty sore all morning and I was dreading the 2.30 dose. Again it was really painful but the nurses did not want to admit defeat and carried on pushing it through. I was so glad when the last drop went through.
I managed to persuade them to get the SHO down who was lovely. He had a number of stabs before calling in reinforcements. The anaesthetist was then called and he had a couple of tries before admitting that I needed a femoral line. As it was 5 o'clock I would have to wait until the next day to go to theatre to get it down. I was not that pleased cause I had been telling them all a long that I needed a line doing. I was glad though it was finally being done and spent the evening resting and even managed to get a good nights sleep.
It wasn't all bad though. Two of the conditions I have are quite rare and they are doing research into them here. I was asked to talk to a research Dr about my symptoms etc. and was quite happy to because not only was he Italian and had a lovely soft voice and sexy accent but he was drop dead gorgeous. I'd be more than happy to talk to him again!
Wednesday
I was told in the morning that I would not be going to theatre until the afternoon so spent the morning trying to keep myself busy. I would be staying in an extra day due to the doses that I had missed so I had to re-arrange tranposrt, carers and the cats.
During the morning I met up with a couple of people from the online headache group that I am part of. It was good to meet people with similar conditions. One of them has had the surgery that I am trying to get funding for and it was great to see the difference it had made in her life.
I went to theatre late afternoon and getting the line in was pretty easy and painless. I was then able to get started again on treatment at 10.30. It made me feel pretty sick that time but the nurse on duty was great and got me sorted.
Thursday
Thankfully today has been uneventful. I managed to go out for lunch to Pizza Express with Mum which made a change from hospital food. I'm now hooked up to my afternoon treatment and so far so good. I am hoping that the rest of the stay will be uneventful. I'll update again when I get home.
Monday
I was up early on Monday ready for the transport to bring me to London. They say to be ready 3 hours before admission time so I was ready to go by 7 and by five past seven the ambulance was at the door. I was pleased cause I thought we would be at the hospital early and I could get settled on the ward before treatment began. That did not quite happen, we had to pick up in Barnet, Edgware and Watford so did not get here till five past ten. I was pretty tired when I got up to the ward so was a bit fed up to find that the ward was full and there were no spare beds. So I and two other patients in for DHE spent the next two and a half hours in the day room. We finally got our beds at 1 ish. Our treatment is meant to start at 2.30 but due to delays in beds, shortage of Drs etc we were told we would not start till 10.30 in the evening. I was a bit fed up but passed the time talking to the nurses I know from previous visits, getting to know the people in my bay and meeting up with people I have been talking to on the internet.
My first treatment started at 10.30 but I had only got halfway through it when my cannula blocked. I have bad veins anyway but the DHE treatment is pretty toxic and shuts your veins right down. Luckily the night nurse was a good shot and got one in first time so I could finish the first treatment. I finally managed to settle down to sleep at 1.30 - it had been very long day.
Tuesday
I didn't sleep great the first night - the ward is like Blackpool illuminations at night with lights everywhere. I have an eye mask but it does not block it all out. I was woken up at 7 for the next treatment and felt halfway through that the cannula was blocking again. I finished the treatment and got one of the nurses to check it. She reckoned it was okay although it was getting very painful. It was pretty sore all morning and I was dreading the 2.30 dose. Again it was really painful but the nurses did not want to admit defeat and carried on pushing it through. I was so glad when the last drop went through.
I managed to persuade them to get the SHO down who was lovely. He had a number of stabs before calling in reinforcements. The anaesthetist was then called and he had a couple of tries before admitting that I needed a femoral line. As it was 5 o'clock I would have to wait until the next day to go to theatre to get it down. I was not that pleased cause I had been telling them all a long that I needed a line doing. I was glad though it was finally being done and spent the evening resting and even managed to get a good nights sleep.
It wasn't all bad though. Two of the conditions I have are quite rare and they are doing research into them here. I was asked to talk to a research Dr about my symptoms etc. and was quite happy to because not only was he Italian and had a lovely soft voice and sexy accent but he was drop dead gorgeous. I'd be more than happy to talk to him again!
Wednesday
I was told in the morning that I would not be going to theatre until the afternoon so spent the morning trying to keep myself busy. I would be staying in an extra day due to the doses that I had missed so I had to re-arrange tranposrt, carers and the cats.
During the morning I met up with a couple of people from the online headache group that I am part of. It was good to meet people with similar conditions. One of them has had the surgery that I am trying to get funding for and it was great to see the difference it had made in her life.
I went to theatre late afternoon and getting the line in was pretty easy and painless. I was then able to get started again on treatment at 10.30. It made me feel pretty sick that time but the nurse on duty was great and got me sorted.
Thursday
Thankfully today has been uneventful. I managed to go out for lunch to Pizza Express with Mum which made a change from hospital food. I'm now hooked up to my afternoon treatment and so far so good. I am hoping that the rest of the stay will be uneventful. I'll update again when I get home.
Thursday 25 March 2010
Not the best of weeks
When I last wrote, I was off to London for my GON injection. The day went well, transport arrived and even got me there early which is a rare occurence. I got to see some familiar faces on the day unit and some new ones as well. I'm a bit of a veteran now when it comes to GON's so the nurse had me explaining it all to the new patients. I hope I didn't put them off! The injection itself also went smoothly and I only had a little wait for transport to come and take me home.
The next day not only did I feel sore after the injection but one of my carers came in to tell me she was leaving there and then. I went into a bit of a panic as this carer was meant to be looking after my cats while I was in hopsital, was going to visit and was also going to look after the cats again while I'm on holiday. The day was spent making various phone calls and getting stuff sorted. I'm all organised now and my other carer is going to do some extra hours but it was something I didn't need. Days like that make you think 'if only I could manage without help'.
Since then although the hemicrania has gone for now, the migraine is still very bad so I've not really been doing much. I go in on Monday for the DHE and although I'm always a bit apprehnesive I'm rather pleased to know that by Monday night all the pain should have gone!
It has been a bad week for PostPals as we lost 3 little girls in the space of a week. Two of them had neuroblastoma, which has claimed the lives of the majority of children that we have lost. I don't know how it can be classed as a rare cancer. It's hard when we lose children as I feel so much for the families and it reminds me so much of when we lost Kerry.
There was some good news. Alice got her wish granted and got to meet Cesar Milan. I'm more of a cat person than a dog person but I was rather jealous when I saw his photo! Her and her family so deserbed a treat and I'm so glad that Postpals managed to pull it off.
I've got nothing really planned for the next few days and am just getting things organised for Monday. I hope they send a big ambulance as I've got everything bar the kitchen sink! I'm going to try and update each day while I'm in as I hope it will take my mind off the feeling sick and stomach cramps and give me something to do.
The next day not only did I feel sore after the injection but one of my carers came in to tell me she was leaving there and then. I went into a bit of a panic as this carer was meant to be looking after my cats while I was in hopsital, was going to visit and was also going to look after the cats again while I'm on holiday. The day was spent making various phone calls and getting stuff sorted. I'm all organised now and my other carer is going to do some extra hours but it was something I didn't need. Days like that make you think 'if only I could manage without help'.
Since then although the hemicrania has gone for now, the migraine is still very bad so I've not really been doing much. I go in on Monday for the DHE and although I'm always a bit apprehnesive I'm rather pleased to know that by Monday night all the pain should have gone!
It has been a bad week for PostPals as we lost 3 little girls in the space of a week. Two of them had neuroblastoma, which has claimed the lives of the majority of children that we have lost. I don't know how it can be classed as a rare cancer. It's hard when we lose children as I feel so much for the families and it reminds me so much of when we lost Kerry.
There was some good news. Alice got her wish granted and got to meet Cesar Milan. I'm more of a cat person than a dog person but I was rather jealous when I saw his photo! Her and her family so deserbed a treat and I'm so glad that Postpals managed to pull it off.
I've got nothing really planned for the next few days and am just getting things organised for Monday. I hope they send a big ambulance as I've got everything bar the kitchen sink! I'm going to try and update each day while I'm in as I hope it will take my mind off the feeling sick and stomach cramps and give me something to do.
Wednesday 17 March 2010
Chitty Chitty Bang Bang and a needle in the back of the head!
This week has not been the best of weeks as my migraine has been really bad as has the hemicrania continua.
I've made the decision not to go back to college until after the Easter holidays once I've had the DHE. I went last week and found that I was a lot less patient than usual and the strip lighting made me feel a lot worse. I feel bad about letting people down but have got to put myself first.
I did manage to go and see Chitty Chitty Bang Bang at the weekend. The theatre was in Milton Keynes and it only took about an hour to get there. We had great seats and they were really comfortable. I enjoyed the show but it isn't one that I would go and see again. I found the children a bit too stage school ish. I loved the special effects though. I really didn't expect the car to fly but it did and was amazing.
I'm now just waiting for hospital transport to pick me up and take me to Queen Square in London. I'm having a Greater Occiptal Nerve Block injection in the back of my head. I have these every 10 weeks and they help to control the hemicrania continua. The injection itself does not hurt too much. The worse bit is that you can hear the liquid being squirted in. They put some numbing stuff in as well so it won't hurt for a few hours but later on tonight it will start to throb a bit and be a bit uncomfortable. That will feel better in a day or so and then the hemicrania continua will be tamed for a few weeks.
Only 10 days to go until my DHE. My hospital bags are out of the cupboard and I'm just starting to get them organised. Each time I go in the more I take!
That's all for now but I'll update before I go in for DHE.
I've made the decision not to go back to college until after the Easter holidays once I've had the DHE. I went last week and found that I was a lot less patient than usual and the strip lighting made me feel a lot worse. I feel bad about letting people down but have got to put myself first.
I did manage to go and see Chitty Chitty Bang Bang at the weekend. The theatre was in Milton Keynes and it only took about an hour to get there. We had great seats and they were really comfortable. I enjoyed the show but it isn't one that I would go and see again. I found the children a bit too stage school ish. I loved the special effects though. I really didn't expect the car to fly but it did and was amazing.
I'm now just waiting for hospital transport to pick me up and take me to Queen Square in London. I'm having a Greater Occiptal Nerve Block injection in the back of my head. I have these every 10 weeks and they help to control the hemicrania continua. The injection itself does not hurt too much. The worse bit is that you can hear the liquid being squirted in. They put some numbing stuff in as well so it won't hurt for a few hours but later on tonight it will start to throb a bit and be a bit uncomfortable. That will feel better in a day or so and then the hemicrania continua will be tamed for a few weeks.
Only 10 days to go until my DHE. My hospital bags are out of the cupboard and I'm just starting to get them organised. Each time I go in the more I take!
That's all for now but I'll update before I go in for DHE.
Monday 8 March 2010
A trip to A & E
I fell last week in the garden whilst 'attempting' to do a bit of gardening and bashed my right leg on a piece of wood. It wasn't too bad although over the weekend it got quite swollen and was all colours of the rainbow and working its way down to my ankle. I decided today, whilst I had a carer to drive to me, that I would pay a visit to the local hospital to get it checked out. I can't have my DHE treatment if I've got a break anywhere so I just wanted to make sure it wasn't. It was totally manic at the hospital - standing room only, thank goodness I had my own chair! I had an x-ray and luckily its not broken. She said that it was a haematoma and worse than a bruise but I always thought a haematoma was a bruise - maybe my medical knowledge is a bit out of date. She reckons it will take a month or so to go down but at least I can have my DHE treatment.
And talking of DHE treatment, it is only 3 weeks until I go into QS. Transport is all booked and I know what ward I'm on. Now I just have to sort out my hospital bag and enough things to keep me occupied for five days. The treatment is not nice but at least I know I will have some pain free time after.
My new bedroom furniture came last week and is really nice. I've got a bit more hanging space which I really needed. The furniture is a lot lighter than my old stuff and really makes the room look brighter. I just need a new curtain pole and lampshade to finish it off.
I've quite a busy week this week again so I'm hoping I'll be well enough to do it all. I'm at college Tuesday and Thursday. I'm getting my musical fix on Saturday and am going to see Chitty Chitty Bang Bang with my Mum and on Sunday Mum is coming round for a Mothers Day lunch.
I'll update next week and let you know how it all went.
And talking of DHE treatment, it is only 3 weeks until I go into QS. Transport is all booked and I know what ward I'm on. Now I just have to sort out my hospital bag and enough things to keep me occupied for five days. The treatment is not nice but at least I know I will have some pain free time after.
My new bedroom furniture came last week and is really nice. I've got a bit more hanging space which I really needed. The furniture is a lot lighter than my old stuff and really makes the room look brighter. I just need a new curtain pole and lampshade to finish it off.
I've quite a busy week this week again so I'm hoping I'll be well enough to do it all. I'm at college Tuesday and Thursday. I'm getting my musical fix on Saturday and am going to see Chitty Chitty Bang Bang with my Mum and on Sunday Mum is coming round for a Mothers Day lunch.
I'll update next week and let you know how it all went.
Monday 1 March 2010
Return of the migraine
Last week got off to a bad start. I woke up on Monday with a migraine, a sure sign that the DHE (the IV drug that I have to help control my migraine) had worn off. When I have the first signs of a migraine I'm allowed to take a drug called a triptan to try and stop it developing. Dr M, my wonderful headache specialist, changed my triptan at New Year to one called Zomig. I took that and it did absolutely nothing so I just had to sit it out with just the oxygen and a pack of frozen peas to help. The same happened again on Tuesday and Wednesday so I had to call my one of the nurse specialists at QS who spoke to Dr M and he has decided that I am to go back to using Imigran injections. They have been ordered from my pharmacy and fingers crossed they should be ready to collect today.
Despite feeling rough I managed to get to college to teach on Tuesday and Friday although I paid for it after. I try to go even if I feel rough as it gets me out of the house and stops me from getting fed up. Both sessions were good - we are on data collection at the moment which involves the learners going round the college counting various things or asking people questions and then drawing charts and tables. They all seem to enjoy this, I think its because it is more practical and we are not in the classroom.
I managed to do a bit of Postpals work last week. I finished off my Easter cards and managed to get a few parcels sent out. I've managed to get each pal an item donated from a US handmade craft website so now I'm on a different website trying to get each pal a card donated. I think Viks has got some other jobs for me up her sleeve which will keep me out of mischief!
I'm getting some new bedroom furniture on Thursday so this weekend I sorted out all my stuff and one of my carers came this morning with a man with a van to take my old stuff away. My bedroom looks a bit bare but also rather dusty from where all my old furniture was so I'll be getting my other carer to have a clean up in there before the new stuff arrives.
This week, I'm hoping to get to college and also want to get some cards made. I've finally found a kit for doing cards for older boys so I'll be making some of those. I'll also be getting my room sorted when the new stuff arrives.
Despite feeling rough I managed to get to college to teach on Tuesday and Friday although I paid for it after. I try to go even if I feel rough as it gets me out of the house and stops me from getting fed up. Both sessions were good - we are on data collection at the moment which involves the learners going round the college counting various things or asking people questions and then drawing charts and tables. They all seem to enjoy this, I think its because it is more practical and we are not in the classroom.
I managed to do a bit of Postpals work last week. I finished off my Easter cards and managed to get a few parcels sent out. I've managed to get each pal an item donated from a US handmade craft website so now I'm on a different website trying to get each pal a card donated. I think Viks has got some other jobs for me up her sleeve which will keep me out of mischief!
I'm getting some new bedroom furniture on Thursday so this weekend I sorted out all my stuff and one of my carers came this morning with a man with a van to take my old stuff away. My bedroom looks a bit bare but also rather dusty from where all my old furniture was so I'll be getting my other carer to have a clean up in there before the new stuff arrives.
This week, I'm hoping to get to college and also want to get some cards made. I've finally found a kit for doing cards for older boys so I'll be making some of those. I'll also be getting my room sorted when the new stuff arrives.
Thursday 25 February 2010
About me - the health bit
I was planning to get this post written sooner but after having Ollie put down, I did not feel much like writing. I've picked up a bit now so here goes ..
I'd been pretty healthy growing up apart from a problem with the tendons in my wrists which required surgery. At 18, I went to Great Ormond Street in London to train as a student nurse. I loved it but I did burn the candle at both ends! About a year into my training, I was tired all the time and was very achy and stiff. I had lots of different tests and these were all inconclusive. It got to the stage where I could not complete the required placements so I had to leave. I had a few months rest and felt better so went and got a job working in a care home in the Lake District. After about six months there, the same symptoms occurred and I ended up going back home. This time things did not get better and it got to the stage where I had to spend a lot of time resting and used a wheelchair when out. After a lot of tests I was diagnosed with Myalgic Encephalomyelitis and fibromyalgia.
I got bored being at home so decided to go up to Alsager to Uni. I lived in an adapted flat with three others with disabilities. I still had to use my wheelchair but I had a great time and managed to cope with student life quite well. Just before I was due to take my finals, I had an excruciating headache and that is where the problems really started.
I started to have severe headaches most days and they did not seem to go away. I thought it was just due to exams but even after I came home they continued. I began to have to spend more and more time in bed and on very strong painkillers. I moved into my own flat at about this time and needed quite a lot of help. I saw a neurologist who said it was migraine so over the next 5 years I tried various medications and was admitted to hospital numerous times but got worse and eventually became bed bound.
After a great deal of persuasion, the neurologist referred me to the National Hospital for Neurology and Neurosurgery in Queen Square, London. (Ironically this hospital is next to Great Ormond Street Hospital!) It was decided that I would need to be admitted to be weaned off all the morphine and other painkillers I was on and then they would try to find out what was wrong. In June 2006 I spent a month in the hospital. I'd had some really negative hospital experiences but this hospital was totally different and everyone was so lovely. I was diagnosed with chronic migraine and a rare form of headache called hemicrania continua. This link explains it better than I can but put simply it means you have a headache continuously on just one side of your head. http://en.wikipedia.org/wiki/Hemicrania_continua
Over the years since 2006, I've managed to improve from the ME side of things but the head side of things has not been too great. I've tried lots of medication but very few have worked and most have given me serious side affects. Since then I've also been diagnosed with another rare form of headache called SUNA which means that I get lots of short stabs of pain during the day. At the moment, I have an injection of steroid every 10 weeks into the back of my scalp to help the hemicrania called a GONB. It's not as bad as it sounds and it does help the pain. Every 12 weeks I go into hospital for 5 days to have an iv drug called DHE. It's not pleasant as it gives you bad cramps and you feel really sick but it does help my migraine. The DHE and the GONB do wear off a few weeks before they can be given again so for those few weeks I can't do a lot and spend a lot of time in bed. I do have high flow oxygen which helps a bit as well as injections.
I had hoping to have an occipital nerve stimulator. This is where electrodes are placed on the occipital nerve and tunnelled down to a battery in your stomach. You then have a control which can stimulate the nerves and block the pain signals. The neurosurgeon says I will be suitable, the only trouble will be getting the funding from my PCT so fingers crossed!
That's it for the health part - I hope my blog entries will be able to illustrate what it is like living with something like this because as my blog title says its not just a headache!
I'd been pretty healthy growing up apart from a problem with the tendons in my wrists which required surgery. At 18, I went to Great Ormond Street in London to train as a student nurse. I loved it but I did burn the candle at both ends! About a year into my training, I was tired all the time and was very achy and stiff. I had lots of different tests and these were all inconclusive. It got to the stage where I could not complete the required placements so I had to leave. I had a few months rest and felt better so went and got a job working in a care home in the Lake District. After about six months there, the same symptoms occurred and I ended up going back home. This time things did not get better and it got to the stage where I had to spend a lot of time resting and used a wheelchair when out. After a lot of tests I was diagnosed with Myalgic Encephalomyelitis and fibromyalgia.
I got bored being at home so decided to go up to Alsager to Uni. I lived in an adapted flat with three others with disabilities. I still had to use my wheelchair but I had a great time and managed to cope with student life quite well. Just before I was due to take my finals, I had an excruciating headache and that is where the problems really started.
I started to have severe headaches most days and they did not seem to go away. I thought it was just due to exams but even after I came home they continued. I began to have to spend more and more time in bed and on very strong painkillers. I moved into my own flat at about this time and needed quite a lot of help. I saw a neurologist who said it was migraine so over the next 5 years I tried various medications and was admitted to hospital numerous times but got worse and eventually became bed bound.
After a great deal of persuasion, the neurologist referred me to the National Hospital for Neurology and Neurosurgery in Queen Square, London. (Ironically this hospital is next to Great Ormond Street Hospital!) It was decided that I would need to be admitted to be weaned off all the morphine and other painkillers I was on and then they would try to find out what was wrong. In June 2006 I spent a month in the hospital. I'd had some really negative hospital experiences but this hospital was totally different and everyone was so lovely. I was diagnosed with chronic migraine and a rare form of headache called hemicrania continua. This link explains it better than I can but put simply it means you have a headache continuously on just one side of your head. http://en.wikipedia.org/wiki/Hemicrania_continua
Over the years since 2006, I've managed to improve from the ME side of things but the head side of things has not been too great. I've tried lots of medication but very few have worked and most have given me serious side affects. Since then I've also been diagnosed with another rare form of headache called SUNA which means that I get lots of short stabs of pain during the day. At the moment, I have an injection of steroid every 10 weeks into the back of my scalp to help the hemicrania called a GONB. It's not as bad as it sounds and it does help the pain. Every 12 weeks I go into hospital for 5 days to have an iv drug called DHE. It's not pleasant as it gives you bad cramps and you feel really sick but it does help my migraine. The DHE and the GONB do wear off a few weeks before they can be given again so for those few weeks I can't do a lot and spend a lot of time in bed. I do have high flow oxygen which helps a bit as well as injections.
I had hoping to have an occipital nerve stimulator. This is where electrodes are placed on the occipital nerve and tunnelled down to a battery in your stomach. You then have a control which can stimulate the nerves and block the pain signals. The neurosurgeon says I will be suitable, the only trouble will be getting the funding from my PCT so fingers crossed!
That's it for the health part - I hope my blog entries will be able to illustrate what it is like living with something like this because as my blog title says its not just a headache!
Monday 15 February 2010
About me
I thought I'd write a bit about me but have decided to divide it into a post on the health side of things and this post which will be about me and the things I like doing etc.
I live in a bungalow in a small and friendly village in North Hertfordshire. At the moment, I share it with three very spoilt cats. I say at the moment because unfortunately I took my boy cat, Ollie who is 15, to the vet today and he is going to be put to sleep on Wednesday. He has bad arthritis and various other problems so this is the kindest thing for him. I'm going to spoil him rotten though with all his favourite treats. My other two cats are girls and are 17 and 10. They are all great company and love cuddles!
My parents live nearby as does my brother. I did have a younger sister, Kerry, but she died 18 months ago. She had Downs syndrome but was extremely lovable and the life and soul of the party. She is very missed and I try and visit her grave as often as a I can.
I went to Uni in Stoke a bit later than most but had a great time and came away with a degree in Applied Social Studies. Since then I've done various online courses and a few teaching courses at the local college. I now volunteer two mornings a week at the college as an adult numeracy learner support worker. The title makes it sounder posher than it is! I basically work with adults who have not learnt basic numeracy skills for various reasons such as learning disabilities, illness, teenage pregnancy, immigration etc. The class is taken by another tutor and I then sit and work with those who need extra support. It is challenging but very rewardable and enjoyable.
I also do quite a bit of work for Postpals. Postpals was set up over five years ago by a group of people with ME and through their website encourages people to send cards, lettters and presents to children with long term and life limiting illnesses. I joined just after it started and as well as sending homemade cards to the children, have also helped out with various jobs and admin tasks. I really enjoy getting to know the children and their families and it helps in a way to take my mind off my own illness and to focus on something else.
My main hobby is making cards. I started by just making a few for the pals but since I've got more interested in it and learnt more, I've started making more and more complicated ones. I also enjoy playing on the Wii particularly WiiFit plus, reading, watching television and surfing the internet. When the weather is good I also enjoy sailing. I'm part of a local Sailability and sail either an Access or Challenger. It's great fun and I enjoy the freedom.
That's it really about me, I'll fill you in on the medical side of stuff in the next post.
I live in a bungalow in a small and friendly village in North Hertfordshire. At the moment, I share it with three very spoilt cats. I say at the moment because unfortunately I took my boy cat, Ollie who is 15, to the vet today and he is going to be put to sleep on Wednesday. He has bad arthritis and various other problems so this is the kindest thing for him. I'm going to spoil him rotten though with all his favourite treats. My other two cats are girls and are 17 and 10. They are all great company and love cuddles!
My parents live nearby as does my brother. I did have a younger sister, Kerry, but she died 18 months ago. She had Downs syndrome but was extremely lovable and the life and soul of the party. She is very missed and I try and visit her grave as often as a I can.
I went to Uni in Stoke a bit later than most but had a great time and came away with a degree in Applied Social Studies. Since then I've done various online courses and a few teaching courses at the local college. I now volunteer two mornings a week at the college as an adult numeracy learner support worker. The title makes it sounder posher than it is! I basically work with adults who have not learnt basic numeracy skills for various reasons such as learning disabilities, illness, teenage pregnancy, immigration etc. The class is taken by another tutor and I then sit and work with those who need extra support. It is challenging but very rewardable and enjoyable.
I also do quite a bit of work for Postpals. Postpals was set up over five years ago by a group of people with ME and through their website encourages people to send cards, lettters and presents to children with long term and life limiting illnesses. I joined just after it started and as well as sending homemade cards to the children, have also helped out with various jobs and admin tasks. I really enjoy getting to know the children and their families and it helps in a way to take my mind off my own illness and to focus on something else.
My main hobby is making cards. I started by just making a few for the pals but since I've got more interested in it and learnt more, I've started making more and more complicated ones. I also enjoy playing on the Wii particularly WiiFit plus, reading, watching television and surfing the internet. When the weather is good I also enjoy sailing. I'm part of a local Sailability and sail either an Access or Challenger. It's great fun and I enjoy the freedom.
That's it really about me, I'll fill you in on the medical side of stuff in the next post.
Thursday 11 February 2010
My first post!
I've been reading other people's blogs for a while now and always thought I would have a go at starting my own but have never got round to it until now!
This blog will be about my day to day life living with ME and three types of rare headache. I will explain about the different treatments that I have and my fight to gain funding for an implant which could change my life. It'll include all the good bits and all the bad bits, hopefully there will be more good than bad! I also hope that writing this will help other people to see that I don't just have a headache.
It won't just be about my health though. I'll write about the different things that I've been up to and no doubt my three spoilt cats will get a mention now and then.
That's it for my first post. In my next post I'll write a bit about me and the health side of things.
This blog will be about my day to day life living with ME and three types of rare headache. I will explain about the different treatments that I have and my fight to gain funding for an implant which could change my life. It'll include all the good bits and all the bad bits, hopefully there will be more good than bad! I also hope that writing this will help other people to see that I don't just have a headache.
It won't just be about my health though. I'll write about the different things that I've been up to and no doubt my three spoilt cats will get a mention now and then.
That's it for my first post. In my next post I'll write a bit about me and the health side of things.
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