Life with a diagnosis

Hey everyone, 

https://www.youtube.com/watch?v=ECn4uYxS4wc&t=314s

There is also another vlog that is an updated version to this...

Recently I have been thinking about how my diagnosis has completely changed the way I'm having to tackle everyday. 

It was something I never thought I would have to do, but believe me when I say took for advantage of what I used to be able to do and what I can and can't do now. 

It was such a shock when the hospital/ doctors finally gave us a diagnosis. It was such a weight lifted of my family's shoulders as we was thankful that they finally managed to find what was wrong with me but at the same time it was scary as we realised something was causing all these things happening to me. 

I think the worse part of figuring out what was wrong, was the fact I was in hospital for over a month on 7 different wards. As what I was feeling and going through, there was really a ward that covered what was wrong with me and it covered many different parts of my body, so like the general side, the surgical side, the bones, the neurological side. So the doctors couldn't really place me on a ward where the doctors couldn't actually do anything for me. 

Once we found out what was wrong, they told me that I had to go to Haywards Heath hospital to have a nerve test. Which I thought would be easy but oh no, it hurt. They basically worked out where your main nerve was and they would put a little battery I want to say on your skin and send a little electric shock to see if that would make your nerves react, which proved if they worked or not. Thankfully all of my nerves worked which was good. So back to the original hospital. Then came along was the list of MRI tests that I had on my spine, brain, legs. Also had X-Ray and CT's of my whole body. The CT experience was a first as I've never had one of them before as I'm a person that just has a ALOT of x-rays as I tend to break a lot of my bones. But the CT they have to put some orange die into your body so that it brightens up your organs and things that the doctors need to see. The results came back and we found out that I had another cyst on my ovary. (Which to me is nothing new as I get these every month and sometimes they burst on their own and some don't. 

So after all the MRI's, CTS, and loads of blood tests they decided that doing a LP (Lumbar Puncture) would be the next step. At first I didn't know what this was, and once they told me I began to worry. So the next day they told me it was going to happen on the ward and they got all prepped and made me lay down for it to happen. It ended up not actually happening due to serve pain that I have in my lower spine. Which is actually in the area they needed to use for the LP. after 3 days of worrying and them debating about doing it and with the pain in that area they decided that putting me to sleep was the best option and the safest for me. So down I went to be put to sleep. Somehow I still manage to cry even though I've been put to sleep before but it's always a scary thought of something happening. I woke up half an hour later to get told I wasn't allowed to move for 2 hours and had to stay absolutely still because of all the fluid that they had pulled out and drained. This was the hardest thing ever to do, as being told not to do something makes you automatically want to do it. So they finally came back with a diagnosis, and this was 

IDIOPATHIC INTRACRANIAL HYPERTENSION 

My family and I didn't have a clue on what this is, so the only thing to do is google what it is. This is basically a build up of the pressure around the brain, but doesn't have a detectable cause. 

We found out everything about this condition and what it does and how it's going to effect me. The hospital have now put me on Acetazolamide tablets, which I've got to take 2 a day to try and keep the pressure down. I'm having to see a Neurologist every 4 months for an update, which funny enough I've got a appointment next week so I've got to update with any different side effects that I have been having. Also a down side of this pressure is that if it gets to high it can have a massive affect on your eyes. This will cause problems to your optic nerve. Something I've got to see a eye doctor about as some of the side effects when my head has been pretty bad is that one of my eyes will go completely burly and I wont be able to see much out of it. Another thing is that I see funny dots and shapes and they go different colours when its playing up. So I'm hoping that this pressure isn't going to cause my eyes to go funny and fingers crossed and really praying it doesn't cause any blindness!

On a plus side I think it was last week, (sometimes I struggle with memory problems, which is also another side effect of the medication I am on) 
I got officially discharged from my physiotherapy sessions. This day was truly a long time coming and I actually cried once I got out because I just felt so proud of myself and how much I had actually overcome since march. To be going from not being able to feel my legs and even not being able to walk without crutches for nearly 2 months was a massive scary feeling. But I finally got the ability back to walk and they tested my walking speed and I done a certain distance in 7 seconds. Today I received the actual letter from my physio doctor and again I burst out crying because it's such a massive thing to achieve. To also see it in writing on how far I have come. I still can't feel my legs much but that's due to the Functional Nerve Disorder I have. Which is basically a disorder when your nerves work but there is still some sort of problem that is causing the pain and numbness. That they can't pin point what is actually causing the problem.

So things that I have noticed that I've had difficulty doing than before is:

• Concerts/ Festivals
• Travelling
• Heights
• Dancing
• Cinemas
• Watching tv with the subtitles on
• Walking far distances
• Picking up things/ dropping things

Cinema: I recently went to the movies to watch Deadpool 2 with my grandpa, thinking it would be normal. Oh no I was wrong, the loudness of the music and the speakers made my head massively hurt, I had to sit through the movie with my hands over my ears to try and drown the volume. 

Concerts & festivals: it is the same as the volume and loudness of the bass and everything. So my solution was to wear ear defenders. This honestly was the best thing I've brought, as this helps so much with just taking out the bass and I can still hear the music, it just isn't as loud. at first I thought oh my I'm going to look like a right numpty with these on as a 23 year old. I've managed to overcome that fear and just wear them during any concerts & festivals as I knew i'd rather look like this than be in a massive amount of pain the next 2 days. 

This photo was taken at Latitude with the ear defenders.

Travelling:I suffer really bad from travel sickness way before I got poorly. So this was nothing out of the blue. I must say though since being on the new tablets it has gotten a lot worse. Which I'm not happy about as travelling on a train to London or anywhere else is a struggle. But I've always got my little blue travel bands that go on your pressure points on your wrist and they seem to work every time. One thing were still yet to figure out is flying on a aeroplane. As some people who have the same say they haven't been able to get on a flight since and some people say they've been fine. So it's just the choice of do I take the risk or not. I think my family were thinking about where is a place that could be a short amount of time on a plane, such as flying to France is just over an hour and certain places in Spain is 2 hours. This is something me and my best friend are looking to do next year for my birthday, so fingers crossed I can cope with flying on a plane to be able to go on holiday.
Heights:
This is something that I have actually never had a problem with. Like I've been on Go Ape 5 times on different courses, and been up on the London Eye endless amount of times and it has never bothered me. Then getting poorly I didn't realise I had a fear of heights until I went on holiday with my parents and my two little cousins and we went for a walk on a tree top trail which is about 30 feet in the air. The thing with this trail is that it starts off close to the ground and then gets higher and higher and then goes back down closer to the floor. This photo I took at the start. Hint why it's so close to the ground. But once we was at the highest point, my god my head felt like it was going to explode!! I couldn't look down and I just had to walk fast and look forward. I couldn't keep my balance as I kept feeling dizzy. I was so happy when we reached the end I actually ended up jumping half way off the end because I couldn't cope with it. My dad, Martha and myself was due to do Go Ape again to take her for her first time but since the tree top trail … I was like nope i'm not doing that! I'll stay on the ground and I'll be the photographer.

Watching tv with the subtitles on:
This is something new that I have experience as with pressure on your brain you are prone to getting fluid in your ear. As with your extra fluid you have it can go behind the middle of your ear which causes like infections and slight hearing problems. So whenever my head is feeling bad I will struggle with hearing what people say and even what the tv says so that's why i'm having to put the subtitles on. My parents hate it as they then end up focusing on what the writing says to what the characters are actually saying. Opps. Sorry mum and dad :P

Walking far distances:
At first I couldn't walk very well without my crutches, but after weekly physio sessions and physical homework I was able to get the strength back into my legs and walk like I was able to. I've been doing fine recently as the holiday involved a lot of walking but I knew if I suddenly felt funny at all with my legs just to sit down for 5-10 minutes and let them relax and sometimes even massage them a bit just to help them. I've recently been able to get back onto a bike and ride for half an hour which we didn't think I'd be doing for a long time, at first I was a bit wobbly and it was a struggle but once I got the hang of it I was back to normal and being able to race my dad down hills. I always lose those but the fact I was able to do it made myself proud.

Dropping things & picking up:

I already find this topic rather funny as I have always had weak bones due to being lactose intolerance and diary free. I was always breaking bones, falling over when there was nothing there. Such an accident prone. That's definitely me to a T! But since this Nerve Disorder and the new tablets I am on for that, I am constantly dropping things. Such as the tea and coffee pots I am always dropping them. My phone endless times I have dropped, surprised it hasn't actually broken. It must have 9 life's. Thank god for glass screen protectors!! Also picking up things that I used to be able to do, I have to be really careful with what I do. Like before I could pick up my little cousins and it would be no problem where as now I would have to be careful. For a while even just picking up a knife and fork to eat with was a massive struggle. Thankfully I can use them properly now :) 

But even with all these struggles I've gone through and the good times and the bad. I am still so proud of what I have been able to achieve. Definitely something this year has been a tough one to be sure. There has been endless amount of love and care that I have received from my family and friends and the support they have given has made me want to push through it and come out to the other end. So fingers crossed these next few appointments so well and I can get back on track to what I was like before. 

Thank you if you have actually read through all of this, it means a lot :)