Friends

When life is a little down, all you really need is friends.

Yes you guessed it, we managed to get out and meet up for lunch with our friend and her son.

We didnt manage much else before that as i was so exhausted.

On our trip out though we managed to post a friend a present which we are praying she will het before shes admitted to hospital next week, we purchased a fair few more baby bits for my sister ready for the baby but these arnt clothes, these are more essential stuff like wet wipes, johnsons baby stuff, sudocrem, nappy sacks and more little bits like that. We also got another lush pastel wool and some ribbon for the baby blanket im knitting once i finish my 6 hats a day.

To say im exhausted now though is a ahuge understatement.

I feel really weak and i cant actually even lift my arms anymore so im a little gutted. I honestly think that this weekend is going to be for recovery and that only.

TTFN

XXXX

Uncertainty

Its been a few chilled days here in our house hold as weve had a a bit of a rough time health wise for me and weve had a lot of paperwork to fill in.

With regards to health, since Alton towers ive had an infection *suprise suprise*. Sky high temperatures, chest flaring, sats and peak flow down. So i went to the doctors last week to catch it early, steroids went straight up and i got put on strong course of doxy for antibiotice. I done a sputum sample to catch which bug it was and although i got told i just know its a type of pneumonia again. Today i woke up gasping to breathe and sats were back to 93%. I dropped my steroids on Monday as it had been 7 days and i didnt want them high again but with an emergency visit to the gp again today they put them back up for a further 7 days and given me amoxicillin and another course of doxy so fingers crossed i start feeling better again soon. Ill do another sputum sample as sokn as my airways are open enough to cough a reasonable amount up.

With regards to paperwork, since my partner had the carers service team out for her last week, weve filled in a form to apply for another grant to be able to have holidays or hobbies whilst im in the state i am. So fingers crossed we can get this.

Weve also had the paper work through from the council for a welfare assessment. It was 4 pages long and i also sent in an addition a4 piece of paper of extra evidence as they didnt provide enough space...talking of rubbish space, they asked for a list of my nedication but only gave one line...an i had to provide another piece of a4 paper filled from top to bottom with my drugs...think they will have learnt their lesson there!!

Well, tomorrow we are going to try and venture out to Liskeard to meet onet of our very good friends and their son. I wanted to get some more fluffy wool for a personal project im knitting and we decided to meet up with them too. Ive warned them i have an infection especially as her sokn is only 11 months so to be nice i will be wearing a mask so that heres no risk of me passing on my pneumonia!!

Aside from all that paperwork, i have yet another form to fill out for a grant through the charity called the muscular dystrophy campaign. I had a re referal done with regards to my self propelling wheelchair but sadly i dont tick all the boxes to get any form of electricalness for my current chair so theyve put me through to the charity. I just need an assessment and letter wrote on headed paper saying i would be a suitable candidate to be given a grant to and i can fill in the rest of the form. Really praying i can do this by the end of july as their next meeting is augst 8th.

Well, fingers crossed i can get out tomorrow and i get my assessment.

TTFN

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

Just A Few Hours Of Normality

Some may say that 2 and a bit hours out the house for some "normality" is pathetic, but for me, it took every last inch of breath and energy.

I saw a banner a few weeks ago for a festival in Lostwethial called Lostfest so i decided that myself and my partner deserved a break from the house and we went a long.

Granted it wasnt as good as we hoped it would be but the rain stayed away and at the end of it we saw something other than the four walls of our bedroom.

On the way back we stopped by a huge discount store called trago and we picked ip another 4 balls of wool. I then completed 2 more baby hats and a templete for some scratch mittens.

Of course just doing this few hours of stuff exhausted ne beyond beleif and i used a whole inhaler whilst out and about. Both my lungs and muscles really struggled to cope. As a result i then slept for 4 hours this afternoon trying to recover.

Dont get me wrong, i love the fact i have got out the house eventually just to mosey around, but im still cheesed off for what it done to my body as a result.

I cant wait to start feeling "human" again. What ever that is. As i can no longer remember!

TTFN

XXXX

Goals And Challenges

After my shit news yesterday about potentially not being able to have children, I decided to set my self a challenge. Whilst I was in hospital last week, a very good friend of mind suggested I start knitting, it doesnt take much muscle mass to do and certainly doesnt take and lung power, so off I pop to youtube and have so far self taught myself how to make baby hats. I have currently made 2 for mine and my partners future children, I am hust waiting for more wool to arrive in the mail and ill be making my sisters baby a hat and ive also currently made two others of different sizes. These extra two hats are going towards my challenge. My challenge being that im going to make 30 baby hats for every NICU unit in England to which there are 165. So that roughly 4950 little baby hats I have set my self to knit. This for me would be an ace goal to achieve, not only because its keeping me busy but also, I cant do things like donate blood or stem cells any more because of my deterioration in gealrh so doing this will make me feel mentally great about being able to help both the tiny little babies who are poorly and also their families because not many clothes fit such small children. On average at the moment im making one hat a day as it does cause me cramps so I fear it could take me a little while to achieve my challenge, but im sure I will feel fantastic when not only the first box is done but also the 165th box just like I felt great after I made the first hat. I will keep you all up to date with my progress of course. In other news today Ive not been to great. I went down stairs briefly today as we purchased Dixie a paddling pool because she loves water, but that small amount for "doing somethinf" totally exhausted me and ive been asleep all afternoon as a result. In good news though, myself and my partner have been in contact the the local registry office in Bodmin about booking our wedding. They are just sorting a few things put and will be getting back to us. Marriage for us is super important as it means that legalky when we have children, because we are married we are both legally allowed on the birth certificate so both play an equal, fair and legal role withing any future childs life. So, theres a lot to keep you posted with...untill next time... TTFN XXXX