Tuesday, 16 December 2014
Mixed Emotions.
Friday, 7 November 2014
A Positive End To The Week
Saturday, 6 September 2014
What If?!
Ever wondered what if...
I do every day!!
What if my lungs were healthy?!
What if my muscles didnt choose to want a progressive disease?!
What if my immune system was normal?!
What if my parents never got a divorse?!
What if my house never caught fire when i was 16?!
What if i managed to get to my uni placement and became a paramedic?!
What if i hadnt met my future wife?!
What if, what if what if?!
The list is endless!!
My latest what if, what if we dont get a home by October 4th!?
Im so blinking scared about everything and this isnt just because we will potentially be homeless but its because a lot of my life so far has ended up going in the wrong direction, it hasnt gone as ive planned!!
So, like before, have you ever though what if!?
TTFN
XXXX
Tuesday, 26 August 2014
Really!?
Ever get so pissed off you dont know how to express it or even deal with it...well thats me today.
For the past year, everything ive done jusg isnt good enough for certain people. My girlfriends parents im mainly talking about.
We decorate our bedroom in january but i got told her dad had to do it as hes better.
We braught my old rabbitt hutch to this house, before we new it as we popped out her dad had built it saying he could do it better...even though i built it first time around.
I start to build our rabbit run, he finishes it saying he was better.
I plant so flowers in the garden in pots, ever day we go down and hes taken over with them again.
Today, i sort out my girlfriend bike so she can start new challenges again. All is safe, she rode it and was comfy and all was working well. Her dad comes up to the bedroom and tells us he will be sorting it tomorrow and cleaning it as hes built bikes since the age of 13...and that doesnt make u any better than me. I too have built bikes, and cars to that fact.
Its pissing me off. Everything i do here is never good enough for them. I mean i dont actualy care how immature they are being about everything. The thing i care about is that its making me feel like shit, constantly being put downand being made to think im never good enough. Its an insult and i hate it.
Im off to be depressed now...that is if i can do that right also!?
TTFN
XXXX
Saturday, 23 August 2014
The Love Of My Life
What an amazing few days ive had...but shhhh dont tell everyone else my enjoyment may be stolen!!
Last christmas, my amazing fiance got me 2 shrek tickets for Bristol Hippodrome. Thankfully also we had recently been given a disability grant. As a result we booked 2 nights away.
On the Wednesday initially we dropped Dixie off at the kennels which we hated might i add and really didnt want to leave her. We then went via my sisters to have cuddles with the nephew and then we finally set off to Bristol.
After we checked in we went for a stroll around cribbs causeway in the hunt for baby clothes bargains as my nephew has been given lots of 3-6 months and older clothers but has about 3 0-3month clothes. Thankfully BHS had a huge sale on and we got 5 outfits for £16 which i was super pleased with. I then treated my lady to spud-u-like. Yes ok people may be like, what, you took her for a jacket potato...but its amazing. You can choose ur own filling and shes never heard of this food place before. Thankfully we both super enjoyed ourselves, so much so we tucked into a millies cookie for pudding...which the othernhalf has also never heard of or eaten before.
Thursday came and it was show time, but not before i treated my girlfriend to another food adventure shes never heard of. I took her to flavourz. Which for those who dont know its and all you can eat buffet bar which has chinese, indian, italian, english and much more all for a great price of £4.95 at lunch tim.
Shrek of course was out of this world. We both was so happy when we left. My other half has also never been to see a show in a theatre before so she was beside her self with joy. Which might i add was great to see after all the crap weve had at home lately. (We ended up buying a gingy puppet to take home for Dixie which she has already eaten off a gum drop oops ha)
Friday came and it was time to come home.
First off we went via the cemetry to visit my nan and grandad. Sadly i am the only family member that ever goes to visit them and also buy them new flowers and decorate their head stones and i was mightly pissed to see that some bastard had stolen the one whole pot of flowers that was on my grandads head stone. Filthy scumbags they are for stealing others stuff. I hate it so much and it makes me really angry.
Well, rant over and off we popped for lunch with mum and my step dad. Whilst eating away, my mum suddenly come out with "how do you feel about coming away with us easter week next year as a wedding present from us. All youll do is share the place with us and you can go off and gander for the whole time". Needless to say we were both shocked and of course said yes.
We finally got home at 8pm or just after. Half way back to Cornwall and the motorway ends up like an asda carpark so wet stopped at Exeter services and sat it out for a little while. Much comfier on the costa sofas that in a car seat.
Today was amazing also. We left to go and pick up Dixie again. The reaction.we got when shet saw us around the corner was the best ever. If youve never seen a excitable puppy, picture a springer spaniel on speed and triple it as that was what Dixie was like. And we loved it.
When we got home i settled down and made the finaly present for my sister. When we first met my nephew, i took my beastie camera with met and took a lot of photos for her. In fact 54 in total. Because im nice, i have gone out and got a black papered paperchase book and made a little portfolio of all the photos i took for her. I was going to send it in the post to suprise her just like ive sent 3 photos to my mum and nan but now that its complete it is rather large so ill be giving it to her in person on the 10th.
Other than all this excitment. The usual crap has gone on. My chest is flaring up again. My ladies parents are still be arseholes and went in our room again whilst we were away. A lock will now be put on our door when we next get paid in 2 weeks. Ggrr
Well i think thats all for now
TTFN
XXXX
Thursday, 14 August 2014
Good vs Bad
Firstly yesterday. Bloody hell I was a right state. My partner was at the gym and i decided it would be a great idea to take our puppy for a walk. All was going well untill we got to a walkway that ran alongside a railway track. At the point of us getting to the track a steam train went by. Our puppy decided it was a great idea to try and chase it. So running as fast as she could her lead stretched as far as possible causing me to be pulled and i fell over which somehow caused her lead to unhook from her harness and she was gone. Because of my asthma and muscles disease i couldnt get to her. A well, undisabled person would of been able to chase their puppy and get them back but for me i couldnt. Plus i was super hurting from falling. At the end of the lane there was a cross roads that led to a road so i had every thought going through my head. I even had it that she had got onto the train track.
I rang the police and the wouldnt help, they told me to ring the non emergency police to which i done...once i got through they refused to help me and told me the emergency services shouldnt have told me to ring them. He told me to ring the council to get the dog warden. Once i got through to them (25minutes later) all they done was take my details just incase someone found her.
Thankfully a fellow dog walker saw me in a complete state and went hunting for her. She also gave me tasks to do whilst i stayed put just incase our puppy came back. I put a shout out on fb, i also rang to local radion and they also done a shout out for us and we rang around the local vets.
2 hours later i had a missed call and a man slowly drove past me asking for a street. That street being where i lived and as soon as i started talking, my voice must of been recognised as next thing i know my puppy jumped up in the back of his carmand went mental for me. (I didnt see her straight away as i was on the floor). The extremely kind man found her about a mile away looking like she was running away from something. I hate to think what was going through her head. As all i know is i was stressed, devestated and in a right straight. Its like a part of my heart had been taken out. Once home and since yesterday, our puppy has been super clingy and wont be in a room on her own so is following us everywhere.
Thanks to the pure kidness of some local people, we have our little pup back but i still keep thinking of the worse...
In good news though, i had a letter through the post today, and i was dreading it as there was a stamp on the front from the muscular dystrophy campaign.
I opened it up think the worst and that they wouldnt consider my application for a grant to get a mobility scooter because of the lack of evidence BUT they stated that theyve reviewed me as an emergency case and have granted me the top amount of £1000 to get the scooter that i had qouted for me as it was made specificly for me. All i need now is to get a further grant of £249 and the scooter have been paid in full so if anyone knows of a great charity that would be able to help me then please let me know...who knows, having this scooter could of prevented me from falling yesterday meaning our puppy wouldnt have gone missing
TTFN
XXXX
Sunday, 3 August 2014
Bite The Bullet
Ever getting the feeling that you have bit your tongue for three months now and when someone pisses you off over something so pathetic and trivial you just flip...well today I did.
Yesterday my partners mum was pathetic enough to moan that there was cake on the kettle and the cans had to be crushed becasue there was too many and then straight after passed a comment stating itll more than likely be her to do it as no one else round here does anything. I held my tongue with this as my lungs were really struggling.
BUT
Today when we went and put our bedding in the washing machine and we got told we were stupid for overloading the machine i had just about had enough and i flipped.
Indeed i said a lot but when your girlfriend is being made to feel like shes five, treated like shit by all her siblings and her parents, gets shouted at everytime she leaves the bedroom etc etc i could go on but my blog would be boring, all because weve not invited them to our god damn ceremony, i decided enough was enough. I dont remember exactly what i said but all i know is i mentioned something about treating my girlfriend the way the 2 blue eyes siblings were treated. Also they need to respect her like shes and adult and stop being such a bitch. Also i mentioned the stress that they are causing me was making me extremly poorly and my lungs really cant take it...
Although a lot more was said, i will stop there as on this last point, you may be just as shocked about the response i had with regards to my health:
"I dont give a shit about your health, get out of my house, your lucky i even allowed you to move in here"
Well that has hit the nail on the head. It proved my suspicions that they dont and have never liked me. They dont care that what they are doing to me could kill me and all in all they are selfish nasty pieces of work.
I and the love of my life are off to both citizens advice and hopfully the council tomorrow to state we need a home NOW.
The council bit may be difficult as 2 hours after our argument, we get told by the parents that if we went to the council theh would tell them they didnt kick us out, we walked out.
I mean not being funny, if you want us gone and have told us to go, why would you be so nasty as to say we caused it ourselves...hang on, wait, i do know: CONTROLL!! They currently have the upper hand yet again.
I wanted to cry today as they told me im lazy, speend to much time in the bedroom and do nothing around the housem
I cant physically stand at the sink doing dishes. Im in agony with my hip and cant sit downstairs as the sofa isnt supportive enough for me and their dog constantly keeps running into my legs. I also cant do the cleaning because all the products they have, have bleach in which causes me to have an asthma attack.
I feel hopless and shit. Talk about knocking me that little hit further in the ground for being a waste of a body in society!!
TTFN
XXXX
Wednesday, 30 July 2014
Depression
Yes i know i keep banging on about it, but for me this is my current life. Its not getting an better right now.
My other half is still getting stupid stupid amounts of hell from her parents. To the point of today her mum left the cooking stuff and our bowls on the side for us to wash as she was refusing to do. My other half left 2 bowls as they werent hers and her mum kicks off. We rsponded by saying she shouldnt have been so pathetic in the first place.
I mean come on really!? Somethings in life really arnt worth arguing about but shes making a huge point to make everything an argument.
I really really hope we can move out of this shit enviornment soon as its making me extremly depressed and ive also put on 5lb in 2 weeks because my diet has been crap through my depression.
On a happy note...Dixie is jumping around the bedroom eating moths...
TTFN
XXXX
Sunday, 27 July 2014
Hiding Away
Ok apologies for not having been here for a while.
On Thursday after my mobily scooter assessment (which was a-maze-ing) i was really poorly. I had yet another migraine plus my belly become extremly swollen and i was in agony. So i curled up in a ball and shut the world out.
Back to my scooter assessment though, weve found the perfect scooter and my other half has been taught how to take it apart and reassemble it. Sadly though its going to cost £1249 so unless i cant get the grants from charities im not going to be having it. It felt so amazing on it. i had freedom. I was my independant self again.
Friday was pretty pants. We were running around, going to doctors, posting parcels and my other half went to the gym. I was shattered and suprise suprise, by the end of the morning i had yet another migraine.
Uve decided that im going to the doctors on monday about my migraines as ive been on my increase tablets for a month now with no such luck so something needs to be done.
All weekend ive basically just chilled. We had a BBQ on friday which was nice thougj even at 6pm the heat was to much so i had to go back to bed and sit infront of the fan.
Today we are off to a place called Sibly back lake with Dixie and we are meeting up with 2 friends and their son. At tue moment it looks nice an overcast so im hoping that i wont get a migraine with sitting in my chair not getting away from the sun.
the stress of my other halfs parents have increased yet again and they were in the middle of slagging me off when they realied i could hear everyword as i was stood outside of the window. I felt gutted. Aparently its all my fault that their daughter is now selfish and never spends anytime with them. Im sorry but monday she volunteers at bernardos. Tuesday she goea to the gym. Wednesday she does to yoga. Thursday she goes to the gym and friday we go swimming. Not forgetting caring for me, baking cakes for her business and also taking Dixie for walks. I feel deflated. I dont know what ive done.
TTFN
XXXX
Thursday, 10 July 2014
Death
Ironically the though of death scares me, yet given the chance i would end my life tonight.
Yes ok some people have it worse off than me, but this is my life. This isnt how i use to live and this isnt how i want to live.
Yes people who have been told they only have a few weeks to live literally want to do everything they can and see everyone to say goodbye
I guess the lucky (if u can call it lucky) thing here is that theyve been given that warning. That chance to say goodbye.
With my illness, i could literally die at any point. Without any warning and without any friends or family
I sucks.
It feels like im in prison and on deaths row. Just casually sat here waiting for it to be my time.
Why is more not being done about asthma.
Why is there no media on it. No regular press releases. No regular adverts raising awareness. We deserve that is nothing else right!?
Im not going to go into details to justify why i would end my life in a second because there are to many reasons. All you need to know is that, asthma sucks. The side effects from all these life saving lung medications suck.
Dont take your life for granted. You never know when it may abruptly come to an end.
TTFN
XXXX
Death
Ironically the though of death scares me, yet given the chance i would end my life tonight.
Yes ok some people have it worse off than me, but this is my life. This isnt how i use to live and this isnt how i want to live.
Yes people who have been told they only have a few weeks to live literally want to do everything they can and see everyone to say goodbye
I guess the lucky (if u can call it lucky) thing here is that theyve been given that warning. That chance to say goodbye.
With my illness, i could literally die at any point. Without any warning and without any friends or family
I sucks.
It feels like im in prison and on deaths row. Just casually sat here waiting for it to be my time.
Why is more not being done about asthma.
Why is there no media on it. No regular press releases. No regular adverts raising awareness. We deserve that is nothing else right!?
Im not going to go into details to justify why i would end my life in a second because there are to many reasons. All you need to know is that, asthma sucks. The side effects from all these life saving lung medications suck.
Dont take your life for granted. You never know when it may abruptly come to an end.
TTFN
XXXX
Saturday, 28 June 2014
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!!
Friday, 27 June 2014
...
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
Saturday, 14 June 2014
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
Tuesday, 20 May 2014
Flipped Around
Sunday, 11 May 2014
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

