Wedding

For our special day we sent out the invites last month and asked for replies by 31st july which is today.

All of my family have replies which is lush but sadly only 3 people had replied from my other halfs so we sent out another messagse to people asking what they were doing.

My other halfs sister is still being mega pathetic and has said shes not coming and one of her brothers have said he has issues with how we are doing our special day so hes not coming either.
So out of the 3 siblings my other half has got, none are coming.

I feel gutted for her. Its totally unfair. All her mothers answer to it was, well its not really a wedding is it do you cant expect people to travel all that way for just a meal. Well lets just say i had had enough of their nastiness and i finally snapped explaining that it is a real wedding. We are legaally becoming mrs and mrs. We are devoting our lives to each other. Were just not inviting everyone to that particular part of the day and we dont want a party. Anyone that knows us both will know straight away a party is not us one bit so were not wasting money.

I just wish people, in particular would grow up and respect that this is how we want to get married.

In the end i had had such a shit time of their potty mouth that i walked out and took dixie for a stroll. Supidly though i went out for an hour and 20 minutes and then ate a family pack of chocolate.

To put it plainly i fucking hate them for what they are doing to us and how they are treating us.

TTFN

XXXX

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

Not The Best

Yesterday I had an appointment to see a hip surgeon to see whether or not he qas brave enough to operate on my stupid hip. The night before i was shitting my pants as ive stopped breathing on the last 2 surgeries ive had and they struggled to bring me back so i was meantally working out whether this is a wise choice.

My other half didnt come with me as i said there was no point in her not going to her volunteering as i knew what was wrong with my hip so it was just a yes or no to surgery.

Boy was i wrong.

The consultant asked me what I knew about my hip and what i had done so i said i had a plain xray that stated i had deterioration of my femeral hip AKA AVN. I then had a plain MRI that showed nothing more so they gave me a steroid injection into my hip in theatre. This increased my pain so they done an MRI that showed I had a laberal tear in my joint. And then i got told i needed surgery and here we are.

His face dropped...and then i started to worry.

He then said he was sorry but i havnt been told the full degree or extent of my hip. He then went onto inform me that i had an inpingement. I thought thats ok, wheres the worry in that I had one in my shoulder, i still have it as i refused shoulder...i can live with that.

But that wasnt all of it...

He then went onto explain that not only do i have the other 3 problems but i also have backwards hips. In other words, they are facing the wrong way. Erm hello, why is it i am 23 and this has never been picked up on before!?

Thats not all, he then went onto explain that along with the other 4 issues, my femurs are also protruding into my pelvis.

Fuck...i just wanted to cry...but sadly he had more to tell me.

He explained that my AVN is minor at the moment so hes not all that concerned and itll be a while before that needs surgical intervention ...  amazing, finally some good news!!

WRONG!!

As i also need surgery on my backwards facing femur proturding hip. He has orgered an urgebt CT scan to see how much bone is actually in the wrong place. I will then be seeing him in 8 weeks which is September 22nd because depending on how much bone is deformed will decided on how quickly and where i have surgery. He is about 80% sure though that i will needs the specialist surgery which he cant do as its to complex for him and hes never seen it in someone of my age before. So he will be refering me to the specialist. Wait for it...who is in London. I will have to go to the other side of the UK from where i live to have surgery.

But wait, theres still more...he also told me, my left hip is identical to the right hip (which is the painful one) so very soon i will be in extreme pain with that hip too and i will need surgery on this hip also.

im gutted. Not only should this have been picked up on at birth but i will be alone on the day of my surgery unless we cam save up a hell of a lot of money to pay for my other half to be in a hotel the whole time im in hospital.

Im absolutly devested and pissed off all on one.

I dont get why the last hospital i was under didnt tell me that my hips were facing the wrong wag and that my femurs were sat in my pelvis. Why didnt they see this as an urgent thing like this consultant in Cornwall has.

I got told in april that the pain is in my head and that there was nothing wrong...yet actually there is severe problems wrong.

I potentially cant have anyone with me during my surgery. What if this time they cant actually get my breathing going again!?

I cant wait for all this medical shit to leave me alone. I want it all to stop. I dont think i cant cope with much more

TTFN

XXXX

Muscles

Finally we managed to go out today with our amazing friends to a place called siblyback lake.

It was amazing, the sun was shinning and it wasnt to hot so it wasnt hell to breathe.

Sadly though because life sucks when i got home i couldnt breathe. All i done was walk up the stairs instead of using the stair lift and my sats plummited to 85%. So straight on the nebs i go.

I have then slept all afternoon since.

Once i woke up, my muscles have completly gone. I literally cant sit up. I cant lift my arms at all and im generally feeling like a jellyfish.

I absolutly hate having this disease.

Its utter shit!!

TTFN

XXXX

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

Busy And Excited All In One

Today has been one of those up and down emotional days

It started off with anger. My partner woke up super early knowing she had an order for a cake. 2 hours after she had been awake and the cake was cooked, the lady who ordered the cake sent a message saying she no longer had the money to pay for it and wondered if she could pay on friday but still have the cake tomorrow. Straight away i said no, it doesnt work like that. Weve taken the decision to not give her the cake. She said she would let us know of she could get the money from someone at 7pm tonight. I have no idea hpw she expected my girlfriend to turn over a peppa pig model cake at 7pm tonight. Crazy springs to mind.

After all that curfuffle, my respiratory consultants secretary got back to me after i left a message yesterday and has made an appointment for me in August to give him my over night sats recornings. I really praying something can be done about them as i woke up again with a huge headache and it puts me in a foul mood.

I then tried to have a snooze this afternoon as i was physically and mentally exhausted and my partners parents decided they would be as loud as possible. Bearing in mind we live in the countryside where theres no traffic or noise, they decided that instead of talking to each other in the garden, they would shout at each other. Pissed me right off as i got no sleep. So not only am i not sleeping on the night time but im being stopped during the day. I wouldnt mind but they knew i was asleep as my partners mum decided she would come in our room and start talking to my partner whilst i was led there with my eyes closed. Actually thinking about it...pissed off doesnt describe in detail enough how i was feeling.

Then ofcourse we had excitment...the pram and car seat we ordered on the weekend arrived. Its so amazing and very well padded for the child. best of all. It didnt have pictures on the side of the boxes so there was no chance any one could see what they were so our worries about the hell we were going to get werent needed yay.

I then on the other hand dropped the bomb shell to my partner for how much money since saturday i spent on baby stuff...and ot came to £159 whoops. Not buying anymore for now then hehe.

TTFN

XXXX

Nothing More To Say

I love my girlfriend so much.

She makes me smile

She makes me laugh

Shes made me the person i am today

Shes the reason i wake up everyday.

Shes my everything

TTFN

XXXX

Reasoning

Why does everything in life have to have a reason behind it. Why cant you just be doing something because you want to, because it will bring you happiness.

Rules should be broken, it brings you the adventures within your life, tests your personality and the way your mind works. It gets you thinking.

Everything in life you should think about, there could be drastic consequnces if you dont.

For example if i didnt think about taking my asthma medications i would be dead. If i didnt think about putting on my seat belt when i set off to drive and then didnt think about hitting the breaks when the lights turn red i would be dead.

Not everything needs a reasoning for it to be done, but everything needs a purpose.

I hate having to explain to people what im doing, how long im going to be etc etc

I moved out from my parents when i was 17 so i managed to lead my life without telling someone my every move.
Recently since ive moved in with my other half it seems like everything we do has to be explained and reasoned to her mum. I feel like i need to explain to her why i go to the toilet as well its that bad. Having had 5 years of freedom so to speak from constant questioning i now feel like im a convict on parole explaining my tag.

It sucks

Surly as an adult we shouldnt have to.

The purpose of this post is because my partner is currently shitting her pants about what her parents are going to say about a delivery we will be having in the next 2 days. We have ordered a pram and car seat. It was a fantastic deal that we got offered and didnt want to miss the opportunity of having it as its the pram weve always wanted. My partner now seems to think we have to be prepared for 50 million questions for when it arrives as her mum will be nosey and want to watch the delivery be opened and then will most definatly have something to say about it.

I really cant wait to get out of this friggin house. To be our own people again. For my partner to actually be thet adult she is.

Rant over.

TTFN

XXXX

Frustraition

Today has been the highs of bollocks.

Starting with...going swimming. Figured it would be great to start the day with exercise, that was untill i got to the pool and had a huge allergic reaction as they had put far to much chlorine in the pool.

After that, we get home to find the post man had been abd instantly from the envelope i knew it was the decision for our welfare appeal. They wont grant us a 2nd bedroom despite all our reasonings behind needing it for me and they wont increase our banding as they dont feel that tje mental abuse that we are getting is bad enough to need to move out quicker. They also dont feel i need to be closer to a hospital and they also dont feel that we are isolated within the countryside that doesnt even have a village shop.

Following all this, tonight we have a message from my other half saying that they wont be coming to the wedding despite her being made to go to theirs. their excuse is having a meal at 1730 is to late for them to be out for their son who would be 11 months. Its a joke, all this shit within our house is because we didnt originally invite people to the wedding yet the bit they have been invited to they dont want to fucking come to.

Im feel like shit and just want to cry.

Should have done wat my girlfriend had originally said, just take our two best friends to the ceremony and fuck everyone else as at the moment no one seems to give a damn about how we feel!!

TTFN

XXXX

Busy, Excited, Tired...All In One

These last few days have been very hecric but amazing at the same time.

We did manage to go away which i am so pleased about.

First off we paid a visit to my sister as my other half baked her the most amazing birthday cake ever so we went and had tea with her, gave her all her presents and webt and seen the finished nursery. So excited as theres literally on 2 or 3 weeks left and the baby should be here.

Following my sister we went off to Dorset, Sunday night was just a chill night with a few dvds, relaxing ready for our big day.

Our donor text us saying he was early but it was ok as we were ready and excited. He is so funny as he fitted us in between a trip to the tip and shopping at morrisons before picking up his son from school. Im so glad that he found us as we couldnt have found a better man to "father" our child.

Post doing the deed, we decided to take a random trip to Glastonbury to go charity shop shopping where we baught 8 baby items for £4. I absolutly love charity shops. We then went and had a proper realy banana milkshake with ice cream. Yum...well my girlfriend had a banoffee one but it was still uber lush.
To top off our amazing day, we then went and had a meal at the pub next to our hotel. I really do love spending these little days out with my lady.

On Tuesday I decided to take my other half to Clarks Village as shes never been there before either. We had a lush bit of retail therapy and i really treated her. She deserves it after all hehe.

Over the last few days ive been waking up with really bad migraines again. Thankfully though because i have been doing the over night oxygen readings its been showing that its clearly low oxygen levels that is causing it as they dropped down to 82% most nights.

In other good news, 4 weeks later ive finally cleared my chest infection so i am super pleased. I hate the fact it takes so long to shift but i guess thats just my crappy body.

Well, we find out if we have had any luck with our donor around the 25th July so if you could all keep your fingers and toes crossed for us I would be super pleased as i really cant wait to have a child with the most beautiful girl in the world.

TTFN

XXXX

Pharmacy

Im so angry i could literally cry.

I ordered my medications from pharmacy a week ago. They told me on wednesday they werent ready so had to dive into my emergency steroids.

I get my drugs today and they tell me yes everything is there we dont owe you anything this time. Perfect i thought because of going away on Sunday.

There i am doing my medications tonight to try and help my other half out and low and behold no steroids in my bag from todays order.

Fuck

Ive no steroids at all.

So i ring my local pharmacy and i get cut off. So i ring minors and switch board wouldnt put me through to them they just transfered me to out of hours gp. Who refused to help me.

So im screwed and literally crapping it.

Ive been on steroids long term for 4 and a half years now and my adrenal glands no longer work so if i dont take a does of steroids tomorrow its not just my lungs thatll be pissed off, my whole freaking body will shut down.

Im going into another pharmacy tomorrow to plead with them to help me. If not ive got to go to hospital and my weekend at the craft fair, visiting my sister for her birthday and going away to dorset with my girlfriend wont be happening and that also means £100 down the drain for cancelling the hotel at last minute.

I cant believe my pharmacy for doing this. Ive had a cock up with them on every order so far and i order drugs weekly because the gp wont increase the amount of tablets etc i can be given at a time. Ive also been with this pharmacy now for 10 months. You think they would have got their act together.

Well, ive now got a splitting head ache so im off to bed

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

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

Yuk

Ok so yet again things are crap.

All weekend ive felt like shit. To put it plainly.

Saturday my oxygen levels wanted to start dipping and by last night i was down to 89%. My pulse was up at 160 and i was trying to be sick...no that sounds wrong. Basically following my tummy surgery it is impossible for me to be sick so my body was going through the motion of being sick but no liquid from my tummy could actually escape.

Ive literally been a vegetable in bed all weekend because of feeling so poorly and im also suffering from yet another migraine.

Tonight i was checking my oxygen levels and they are now sitting at 86%.

I thought my sats monitor was playing up initially so i put it on my other halfs finger but it came up at 98% so its clearly just me.

Im refusing to be admitted. I cant. Next week we have something really important we have to do and im not missing out on this opportunity.

Really wish my lungs would get a grip and give me a break

TTFN

XXXX

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

Families

Tonight im feeling a little overwhelmed if im honest.

Reason being because my sister and I have never really got on. This has addmittedly upset me that it had turned out this way but you cant choose the path of which ur life leads when your young. Your directed and shown the "right" path by ur elders so to speak.

Well, I think all that has recently changed.

Since ive become really poorly and disabled my family have been drawn together in a weird sort of way and we talk more often and see each other more often. I think this is mainly due to the times of being on breathing machines and them being scared that they could have lost me before they really got to know me.

Anyway, back to tonight. I had a suprise phone call from my sister. Initially I thought shit, whats happened? Is she ok? Is the baby ok? BUT instead, she was just inviting myself and my girlfriend around for tea on or around her birthday. She said it will more than likely be the last time ill see her pregnant and I can also see the babies room finally all decorated and complete.

I thought this was lush. Ive never been invited around to my sisters house for something to eat and she moved out 10 years ago.

This may seem silly to some, but for me its a huge thing. To me it feels like a level of acceptance as a human. I feel like im veing allowed into her life on her terms and into my future niece or nephews life.

I love it.

I was so shocked about the phone call, all I could say was, thats fantastic ill make sure nothing is booked and ill get back to you.

Of course, heres not doubt about it...we are going

TTFN

xxxx