Who would of thought a scarf could be such a issue?

I love the diversity of a scarf and it certainly came in handy at a village fete when the sun was beaming in the afternoon but the day started with a breeze.

At first I used it as a wrap to protect myself from any chill in the air as cold is a trigger to my fits. Then in the afternoon I wore it as a headscarf to protect my sore and sensitive head from the sun. Both of these attracted comments "what is it you are wearing" and "why are you being a pirate." Neither comment was said with any ill will and was in fact probably meant as humour but at the time both made me feel very uncomfortable as I needed to wear it for my condition.

Now I think about it condition or not, I have never cared before what anyone thought of my clothes. I dress for me, so I will continue to do so and not let wearing something for my conditions effect me.

After a trip down south to a stockiest to try it out then a few days to think about I have ordered a Foldalite Pro wheelchair from a local dealer I use who will be able to look after any repairs if needed.

It is a small, folding wheelchair which can go 9 miles at a speed of 4 miles an hour. It has a 16.5" seat but as it does not have sides so I am not restricted once you get a jacket on or need to adjust position. The arms fold up and over to allow you to transfer and get under tables. The batteries are lithium and plug in to charge while still in the chair upright position or folded.

Another plus is the controller can be moved so someone else can hold it and take the reins if needed if I am having a bad a bad day and it has a very small turning circle so ideal for in the house.

I am looking forward to getting back out in the world.

I am using my nanna's old wheelchair when going outside as I cant walk any distance even with the rollater so the time has come to get my own wheelchair that is comfortable and practical. I hear people think they are giving in by getting a chair and I understand their thinking but that was not my thought process, to me it helps give me independence that is being taken from me.

I am looking for an electric wheelchair as at the moment it is simple things like when we go shopping it is difficult to be in tune with whoever is pushing and stop at the right places, get at the right angle to look or when we are with a group of people getting in to a conversation because of my positioning.

I need electric, that is light weight so it can be lifted into the car as I am still transferring from wheelchair to car seat, can be used indoors and outdoors so comfortable enough to be in for long spells and good battery life.

So far my search is not going to well as even when separated down into parts, they are too heavy for my parents to lift into the car, but I have seen a folding one online but not sure on the comfort and I am not buying one without trying it. On with the search and research.

My vision was playing up more than normal so I went to the opticians to get a photo of the back of the back of my eyes to check if my papilledema (swelling of the optic nerve) was any worse and luckily it wasn't but my prescription had altered slightly so I bought 2 new pairs of glasses (buy one get one free) and came home.

As always I received 2 emails from them, the photos of my eyes so I had a record of my optic nerves and a survey about the care and service at Specsavers. I always complete the survey truthfully as I know how important eye health is and want it to be right, for example many people with IIH are first seen at the opticians and sent to their local hospital to be checked over as swelling of the optic nerve can be a sign of a brain tumour so it is always taken seriously.

A few months later I then received a letter from Specsavers head office to inform me I had won £500 from completing the survey and this was followed up by a phone call from my local store arranging a time to collect my cheque, I was over the moon.

The money has been put to good use as it was used towards a much needed stairlift and I will be completing call my surveys from here on.

I had my PIP assessment today (2nd Aug) which was not half as bad as I though. What the outcome will be I have no idea but the lady I saw very nice, nothing like the horror stories I have heard. She seemed to listed and was pleasant while going over everything on the form. Yes she asked some things in different ways later which you could tell was to see if she got the same answer but I guess this is her job. When I was confused and in a lot of pain it was obvious and mum was there to help.

The worst part was having to sit and go over everything I have difficulty in doing, thinking about it all at the same time did nothing for my self-worth, plus I was utterly shattered by the time we came out having to concentrate for the hour.

Lets hope I get the right the right outcome!

For over a year I either struggled when walking with my sticks or was dropped at the door and waited until whoever was with me had parked up and come back to me in the hopes I would not fit until they return, but I then came to my senses. As I then needed to use either a walker or wheelchair I decided to apply for a blue badge.

I jumped online and found out everything they needed to know which, was a lot of information about all my appointments, medication, and of course walking distance plus how it effects me, I filled it all in but then it crashed.

My next step was to ring up and was really easy, she took some basic details and asked me to come down to the council office over the next few weeks to have my photo taken, pay £10 and that was it. Easy.

Why did I wait so long and struggle?

Once I had been to the office, it arrived the next week by post with an information booklet and now my hospital appointments are so much easier.

My lesson from this if something can help you let it.

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.

Sometimes we get so caught up in our own life’s and conditions that we don’t see other peoples journeys which is often much more or bigger than our own.

I first met Annabelle while supporting the patron of her charity Emilia who is a talented singer and was competing in the final of a competition. I warmed to Annabelle and her parents straight away while waiting to go in to watch, which to be honest it is not very hard to do.

Annabelle is a young girl with Vascular EDS (Ehlers-Danlos syndrome), which is a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Her parents set up Annabelle’s Challenge charity as this is a very rare condition and there was no support out there for this type of EDS.

Due to my seizures I was so frightened to be near her in case I had one knocked her, but I watched her playing while the singers where on, this has to be such a hard thing to judge, you need to live your life but make judgement calls all the time.

Since meeting them I have watched an interview where they spoke about the condition and how it affects people and their families and it brought me to tears.

I have also attending a few fundraisers and became a member of Annabelle’s challenge and will continue to support them due to the work they do, providing help and support to families with this hereditary condition.

If you hear of anyone with Vascular EDS or want to offer support please point them to www.annabelleschallenge.org

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.