...

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

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

As Promised

Ok, a little delayed but here are the photos I said I would post. Here is Mr Spice post surgery, back in my arms, super snuggly and super sleepy.

Here are the shoes that i have decorated myself-because i am amazing of course c; joke. Only thing left to do though is add the laces but they still havnt arrived yet.

And finally here is my first 90 knitted hats ready to be boxed up and posted

Hold that thought, there is one more photo that i couldnt resist not showing you. Myself and my partner had our heads turned for literally 5 secs, when all of a sudden we heard crunching and remembered we had left the crisp packet (still with crisp in) on the bed - bad move as this is what we looked around to lol

TTFN XXXX