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