The Northwest have a IIH regional group that I set up in 2012 have their first meet up that year. It was a great turn out and for many was the first time they had meet others with the condition.

From here the group continued to meet at different towns around the northwest with a solid core group in attendance and others coming and going as they felt they needed the support or it was close to them. Parents, friends and children also came along making it a true support and friendship group.

Due to IIH and other conditions I have been unable to arrange meet ups for a while, then Covid kicked in. Other in the core group will help once we feel ready to meet up again and if my memory and health on the day is good enough I can attend. 

Mum and I have arranged several fundraising stalls for a charity called IIH UK who supports people with Idiopathic Intracranial Hypertension. I found IIH UK in the first few weeks of after being diagnosed, while still in hospital and they have been a great help to me, so much so that I now help them as and when I can.

Doing stalls are hard work when especially when ill so I have to rely on friends and family to do all the physical work and personally I find busy places difficulty (noise, light) but we meet some lovely people who are both generous and more importantly interested in the condition. They really do take time to chat and ask about what IIH is and how it affects me and other people. Many people also tell me about their conditions so it’s like giving us both a chance to offer support just by listening and knowing someone cares. I often think that’s all anyone needs in their day to brighten it is someone who is going to genuinely take an interest and say something kind to them.

Unfortunately I am not in a position to do any stalls at the moment but I hope to do more, just maybe smaller ones.

On 10th May 2015 my best friend Gilly did a 10k run in my honour and at the same time made hundreds of pounds for IIH UK how support me and others with idiopathic Intracranial Hypertension.

I don't think I can ever tell Gilly how much this meant to me as she took time to learn about IIH, told everyone about her run raising a lot of awareness of IIH, spent a lot of time training as well as looking after her little one and still having time for me who could no longer get out to visit her.

Throughout the run Gilly held on to a squashy IIH UK brain to get her through the pain barrier and she held it up to any TV camera she saw. She says any pain she felt during that time was worth it when she knows people with IIH suffer every day.

I am so lucky to have her.

I was not sure what to expect but me and mum booked to go to Derby to a IIH conference and what they called a weekender. It was organised and run by the charity IIH UK and was the first time we were going to meet anyone with the same condition so people who really understood this roller-coaster of headaches, eye pain, tinnitus, disorientation and doctors saying different things.

We got there early and sat in the foyer of the hotel, I had made sure we were both wearing IIH UK pin badges and wristbands. the next thing we knew a lady called Shelly who is a trustee for IIH UK threw her arms around me saying hello and how lovely it was to meet me. Of course she knew me from my Facebook photo as well as the IIH things we wore but was this lovely to everyone who attended making everyone feel right at home.

The first person we meet with IIH was a young lady from Scotland who attended with her mum and dad, we chatted in the foyer until our rooms were ready but I could just see straight away our similarity's in the way she walked to how we spoke about things.

That evening we eat with another lady and her mum again similarity's where there and it was nice for mum to chat with another parent of an adult child. Later in the evening we learned where the "weekender name came into it" people gathered in the bar to socialise and chat not just about IIH but to have a good time. It was great to see, yes some had to bow out early but no one had to make excuses, everyone understood. When someone needed to lye down due to low pressure that was fine, again they could do that with no judgement.

Saturday morning and lots of people arrived for the conference. It lasted most of the day with breaks and lunch. I learned all about IIH UK as a charity, what they are doing and have done. Plus learned so much about the condition in just one day, I took a lot of notes. One of the ladies on our table made a big impression on me Karen. She also chatted to mum a lot and of of the things to come out of it was I am moody and short when I am in pain, so I really need to try and work on it.

One of the things to come out of the conference was should they offer regional groups and does anyone want to help with this so I am going to think on it.

As more IIH people stayed at the hotel this evening the "weekender" was even more fun. Great IIH stories, rearranging of furniture to get everyone involved, even the other guests where in on the action.

Sunday was time to go home but with lots to think about, great memories and friends made.

I am looking forward to next year already.

I have been signed off work as my head pain is ridiculous, I can hardly hold my head up for long, but lying down hurts more. I am sensitive to light and my walking isn't great.

We have decided I need a recliner chair, as my couch has a low back so I cant rest my head and this way I can get some rest as I am shattered.

The next challenge we face is getting to the shops in my condition to find the right one. It will need to be electric as I cant push it back with my feet, oddly that will just cause my head pain.

Mum and dad will take me with hubby is working, I feel hopeless.

In November 2011 I was taken onto hospital due to what we all believe was an allergic reaction to fish (thai take away). Who knew that was going to be the start of such a painful journey in my life?

While the doctors and nurses where dealing with the swelling from the reaction, I was also complaining of knee pain and then my head began to feel like it was being crushed, as my vision started to blur.

With allergic reactions the swelling will reduce they come back needing a course of steroid treatment but it was really my other symptoms that left me in hospital for 3 week.

Some of this time is due to the local hospital not having a neurology department so they only visit twice a week but I had many blood test, CT, MRI a lumbar puncture which lead to my diagnosis of IIH, Idiopathic Intracranial Hypertension and started on a medication called acetazolamide.

Having never had heard of this neurological condition before, I knew it was going to become a big part of my life so I found a charity to learn about it and that was IIH UK.

Then to top it all of nicely as I was about to go home I started to fit so that will mean more tests as an outpatients in the future.

As time goes on I will let you know about my conditions, how they effect me and the support I get.