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!

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.

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.