Fresh Air

With the weather being a little better today with respect to not actually raining we decided to do a random day out.

Our first port of call was to the Looe Food Festival. Our friend randomly told us about it last night so we decided why not. We purchased some pina colada curd (which we got around christmas from the same company and its REALLY good so we had to get more), we also got 1 apple and walnut bun. Its basically like a chelsea bun but dofferent flavours and because it was literally the size of my head we got one and shared it. Didnt want to eat more for the hell of it.
We also got a crepe each, but because we are cute, we got one sweet and one savory and shared them. Saves on money and calories ha.

Following the festival, we found a carboot sale so decided to make an random stop to have a nosey. We didnt get anything though as it was all a little cruddy.

As we had Dixie with us we decided to tae her to a place called Respryn which is part of a national trust place. She loves ot here as she can run in and out of the river and of her lead. Though my girlfriend spoke to soon. Just as she said "im so proud of Dixie, swimming and being so good in the water" - Dixie got stuck on a branch in a current by her harness. Thankfully she managed to wriggle out of her harness and get away. As i saw the harness still on the branch, i took of my shoes and socks and trousers and jumped (not literally) in the river to retrieve her harness. But by the time i got there it had literally vanished so a new harness has just been ordered. Typical!!

After all this though, i was so exhausted and have literally slept from the minute i got back which was about 3pm untill about an hour ago.

A bit or normality and im pooped!!

TTFN

XXXX

Finally A Smile Has Broken Through

The simple things in life really do come for freet.

Today i have been unable to get out of bed at all, my muscles have been so weak and i just cant breathe because of this infection so instead ive knitted 8 more hats for my NICU units challenge.

Whilst upstairs doing this, my beautiful other half has been up with me keeping me company doing her wood art ready for the craft fair we are going to.

The meaning behind my title is that all day weve just been chilling listening to my itunes list and my lush girlfriend has been singing away...and she is a bloody good singer.

This has literally just gave me both and internal and external smile.

She really is the reason i push to live. If it wasnt for her, her talents and her general love for everything and everyone i would have given up ages ago.

TTFN

XXXX

Because my lady is so talented (im praying this works) ive uploaded her singing...i love her voice!!

...

This post in my mind shouldnt have a title...theres nothing in this post that deserves a great name, thought or mention as its all crap.

Following our trip to Alton towers, my migraine stayed untill Tuesday and was making me feel so poorly. I spoke to the doctors and theyve now increased my Amytriptoline tablets to 50mg to see if its going to make any difference, so far not though as as of yesterday, i have another one arriving.

I also had to speak to the doctor because i have yet another chest infection. By sunday night my oxygen levels were 93%, my temperature was 38, coughing up lots again and have really bad pain in the back of my lungs. Ive sent a sputum sample again but for now my steroids are back up and im on doxy for the next 2 weeks. This is all in the hope that weve caught it early, attacked it hard and can avoid an admission.

Weve also had the community carers team out for my other half to see what extra help she can get. Whilst they were here weve expressed out conserns for living here with the way her parents remain to treat us. She has put in a urgent message to the council as its putting us both in danager...this being because my other halfs mental state is deteriorating again because of the mental games that her parents are playing with her and as a result on 3 different occasions now shes made errors with my medications.

We also found out that suprise suprise, weve been lost in the system for my community physio, occupational therapy and also hydrotherapy so ive had the critcal care team from Trelisk hospital ring me to state that theyve been made aware and will chace and call me back by Tuesday.

Ive also had to put in for a re referal for the wheelchair services. Sadly i can no longer push myself in my wheelchair because my muscles have deteriorated again. So now they are going to see wether any electrical modifications can be made to my current chair and if not what else they can do for me.

I guess one good thing about this week is that ive completed another 90 knitted hats for the NICU units and they are all boxed ready and waiting to be posted.

TTFN

XXXX

Waiting For A Change

Sadly im still pretty much in the same mental state, no better but also no worse. Though i do wish that it would get better as its really playing on my mind.

On Thursday it was my best friends birthday and both myself and my oher half with my best friend went to alton towers. I drove us up there as im not a huge fan of coaches.

I was in my wheelchair all day as I just couldnt cope out of it. Because we got disability passes we were also allowed "special" passes which meant that we got to que jump and go straight to the front of every ride. With having this is meant we got on ever ride which was amazing.

By about 5pm i decided to stand up and stretch my legs for 5 minutes ready for the 6 hour drive home. Sadly though because another migraine had started hitting me, as i stood up i ended up collapsing straight down to the floor. Was out for the count on the floor of alton towers for an hour. When i woke up i felt really week, breathless, was shivering and generally felt like crap. I started driving us home but within an hour i had to stop at the services as i just couldnt cope anymore. After a good rest we set off again.

Thankfully my dad lives 10 minutes from my best friends house in bristol so i rang hime up telling him we were crashing at his house for the night. I literally felt like crap.

On friday, we set off home again stopping near on every hour and when we got home i literally went straight upstairs and slept for hours.

Something really took it out of me. My temperature has been sky high since and i am feeling chesty so ill be sending another sputum sample on monday in the hope itll give answers.

My other half has been making her owl cake that someone has ordered and it looks blinking amazing, ill have to show u all a picture once its complete.

TTFN

XXXX

Wants Life To End

Literally, after today i really cant take any more.

All weekend ive been  spiralling further and further down because of things that are going on and im getting toy far into my depression im now struggling to pull myself out.

Being at mums was good in the fact that it was just me and my beautiful girlfriend but in theory it was just putting off the inevitable.

As soon as we got home, the shit literally hit the fan.

Argument kicked off, we were called ever name under the sun and we were made to feel like utter crap

And guess what the cause of it was...yup you got it, the happiest day of our lives, our  wedding.

My family have suprisingly been very supportive and happy for us. My partners on the other hand have really really kicked off, to the point theyve now told me im no longer doing their wedding photography and my  partner is no longer their bridesmaid. All this is because they arnt coming to the "ceremony" section of our wedding.

We are both so upset.

Its our day, we dont get why we are being treates like this.

Ive now contacted the welfare team for the councel explaining the urgency to get our own house as i fear that if im kept in this situation i will try to end my life again. They are just seeing what they can do to help and then will get back to us.

In good news though, ive now completed hat number 150 so another box is complete and ready to send.

TTFN

XXXX

Frown Isnt Upside Down!!

Ok so im still strunning to see light at the end of the tunnel.

Everytime i think something fantastic is happening, I get knocked back down!!

I had the doc ring me up on Thursday because it seems we are having the same battle as last time for keeping my aminophylline levels up so i am now on 600mg a day to see if that does the trick.

Today my other halfs sister arrived back in the UK after a week abroad on holiday...next thing we know weve got a text stating they have our invitation and she then starts getting nasty that weve not invited them to the ceremony. 10 minutes later i get a facebook message from her girlfriend saying shes not coming to the meal weve invited to because she cant see the justification in taking time off work to come down for a meal they have to pay for, so i reminded her that there doesnt need to be a justification, we just wanted our family to celebrate our day with us...i guess for some thats a hard concept to grasp!? I wonder if i could tell them that i dont see the justification in doing their wedding photography for their wedding next june!? I wont because im not nasty. I want to be there for their big day even though it means travelling 300miles and 4 hours to get there, then paying out for a hotel and then travelling back...never mind the fact that i am disabled and struggle to drive 20 minutes!!

Anyway, rant over for now.

In other news, im a little concerned about my muscles. To those that dont know, ive been diagnosed with proximal myopathy which basically is a muscle wasting illness from being on long term steroids for my asthma. Its now getting to the point that im struggling to hold my head up, my neck musclsa are really starting to struggle and im having to wrap my V pillow over my shoulders and under my head to support myself. This is the last thing i want. This is another kick in the teeth for being disabled. I know my consultants had warned me but they said years to come like 10 years...not 10 months down the line.

Im currently at mums now though. We needed to get out the house. The stress is getting to much and its making me even more depressed. It also helps mum and my sister out as she was meant to be dog sitting for our mum whilst shes at a friends wedding but with her being 31 weeks pregnant, having a hyper dog running round your feet isnt wise, so weve braught Dixie with us and were looking after the 2 dogs.

Well, im off to sleep now as yesterday anoth migraine set in and its hanging around again.

TTFN

XXXX

Loosing The Will!!

These last 24 to 48 hours mentally for me have been a huge struggle.

Im still struggling to see the future. Im struggling to see what the point is. My health is just going to get worse, i dont want to end up like a vegetable and having everything done for me. Thats no life. Especially when ive had such a full on, busy, outgoing and active lifestyle up untill now.

Some people may say but think about what youve got and what youve achieve so far or even, there are worse people out there...yes thats great but for me, this drastic life change has hit me hard.

How would you feel if youve been told, roughly 10 years time you could be severly disabled or that you cant carry your own children or that if your partner was to have children you will never be able to run around with them at the park etc etc...i have been told all this and the reality behind it sucks.

5 years ago, i was working at bristol childrens hospital as a health care assistant and i bloody loved my job. I also had an acceptance to Surrey University to start my paramedic training and I also got accepted by London Ambulance service as a student paramedic. These last two where to be started after i decided to take a gap year and see what the hospital enviornment was like...it was then a few months later my lungs took a huge turn for the worst ... and then i lost everything. My career, my flat, my life.

I see people running in the street keeping fit and i think to myself, 5 years ago that was me. I would go running every night and then 3 times a week i would do a 6 mile walk followed 40 lengths in the swimmingpool. I can barly walk 30 yeards and only do 20 lengths if that in the pool.

Its gutting.

I hate it.

Why does life have to be so cruel.

Sometimes its difficult hearing other peoples issues to. When you have so much going on in your own life and your own head it makes you feel that little bit worse. Not only because i cant help them but because i know how they feel. I know what its like to have such a drastic life change.

Someone a few months ago passed a comment on facebook to me that i thought was extrermly harsh considering what i use to do and what i try and do now. They posted a photo of a stunning hotel they were staying in and i simply said, you may have to share some of your money so that we can have such lovely holidays...there response was - not being funny but we work hard, earn our money and deserve a break. This tore my heart to shreads as like i said before, i was in a job etc and persuing a massive future. Even now, im still doing photography so its not like im sitting on my arse.

Its things like this that are sticking in my head. Tearing me down and adding to my already complicated PTSD.

My other half still doesnt know the full story of whats going on in my head. It scares me. I cant scare her too. Thats 100% unfair.

Who knows, tomorrow may be different. Ive tried keeping busy today and knitted 5 more NICU hats and the sleeves for the baby cardigan im making. I also had a follow up appointment with the maxifacial specialist after i had a tumor removed from my lip just before christmas...and even this news wasnt perfect as he told me it will grow back and could turn into cancer at any point. Fab hey!!

TTFN

XXXX