Still ... Blurgh

Soooooo Things are still crap here. The council have stated they wont help us any sooner untill we are actually homeless because there are a total of 28000 people that need homing and aparently we arnt a priority. Something isnt right here. Not only are we not being helped whilst we have being mentally abused but my health needs dont help us for anything. Not only this but because of my vunerability, according to the charty shelter, were meant to be priority but we arnt we just dont get it. On top of this, i woke up this morning dripping wet but freezing and and giess what my temperature was 38.1 and my peak flow is 280 post neb. Gp says ive got another infection so higher dose steroids and more antibiotics And lastly todah for shit news...the lump that started in my mouth under my tongue over the weekend is now about the size of a golf ball and the dental hospital who i was under last december for the lump on my lip for some reason wont give me an appointment Im so worried as ive had 2 tumors in my body now and it looks like this is a 3rd. Im worried that this lump could be the big c...know idea where i go from here if they wont get me an appointment in the dental hospital. On a good note though, i have the CT scan for my hips last night and will get the results on the 22nd I leave u with the yummy picture of my lump.yum.

TTFN XXXX

Flashbacks, Nightmares And PTSD

Ever had the feeling you were dying, of that you didnt belong, or simply just that you wanted to give up!? Ive suffered these and to this day and far into the future I will continue to suffer these problems. Sadly over the past three or four days ive been having the worst nightmares, flash backs and my PTSD is really flaring up. The one image I keep reliving is one from when I lived on my own in Clevedon. I had wrote about this story before but it was a long time ago so im hoping that maybe talking about it again may lay the history to rest and that little cabinate in my head can lock the memory away. It was roughly 3AM. My lungs were giving me hell again, but it wasnt severe. As a result I rang the good old 111 in the hope to get a doctor out to me or be able to see the doctor at his location. I had an alert on my address and name to which the nurse in the phone had picked up on and told me I was being put through as a priority instantly. Perfect. 5 minutes later and I had the doctor on the phone. As he was worried he told me he was going to send the on call doc that was free and closest to me. He told me the doc would be with me in no later than half an hour. Grand. Three hours later, the doc hadnt turned up and my landline phone couldnt dial out. The last person to phone me hadnt hung up properly at their end. Where I use to live there was also no mobile signal. Unfortunately, by this time I was no struggling really bad. My thoughts of getting the on call doc to me sooner to prevent and admission had failed because they didnt turn up. I remember pressing the emergency system I had set up on my phone and that roughly it for the next few minutes. The next thing I know, there are 4 paramedics and 2 police officers standing around me in my bedroom. My front door had been smashed in by the police. Aparently the paramedics had been ringing the bell but was clearly getting no answer as I was out cold. The paramedics were panicking. The couldnt get a line in so they told me the put oxygen and nebulisers on me as my oxygen levels were 82%. They then had to give me IM adrenaline, hydrocortisone and clorophenamine hust incase my attack was triggered by an allergen which they could work out as I was unresponsive. I then got taken in the ambulance and rushed on blues and twos into resus where thankfully I was a little better but had be labelled "status asthmaticus". Id never heard this befor, and it wasnt till I was in ITU that it had been explained to me. Dont get me wrong, I thank my lucky stars I survived this attack. Many recent events have shown me life is great, people care and I am loved. Its just somedays, like yesterday where I was in bed all day because my legs didnt want to work, where I wish my life had ended that night. There must of been a reason why god decided to not give me the help I needed by that doctor, but for him to then send all those medics did he realise he done wrong?! Had he realised he made a mistake!? From this I can only pressume I survived this attack like all my others (over 60 now) because something or someone was out there for me... ...I believe this to be my girlfriend. 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

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

Anything Else Want To Come My Way?!

Sorry for not posting yesterday but I was so overwhelmed with information I just couldnt bring myself to sharing it.

I was at Musgrove park hospital in Taunton for a MRI on my hip.

I had to be there for 0920 in the morning as first up i had to have a massive needle poked into my hip joint again to have dye pumped straight into it. This was done under xray guidance. Initially all was going ok, then suddenly I felt very sick, went mega dizzy and from what i can gather, the colour drained from me and i went spaced out. Next thing i know both the nurse at my head and the consultant injecting me was asking if i was ok.

The whole team on this first stage was fantastic.

Following this i then went round to the MRI scanner. I got told that i would only be about 10 minutes...2 and a half hours later im finally back with my other half who had been going frantic and worrying mega because i had been so long.

off we toddled to the cafe though where i had a coffee to wake me up again for the journey back home. Fingers crossed itll only be a few weeks and ill have the result and find out what treatment i need.

Once home i had to ring my GP to update them on the new drugs ive started and i also wanted to check both my sputum and blood tests that i had done on Monday.

I was so pissed. The receptionst told me that yes the result were in but i had to physically come in to see the doc to discuss the result...and the next nearest appointment was 3 weeks away. I obviously refused this and said ill sort something, but in the meantime could the doctor ring me so i can tell them about my new medications...cheeky me then mentioned the blood results to the doctor when they rang me back and bloody hell im friggin glad i did. It was with regards to my phosphate again...and it remain critically low. Ulyour levels are meant to be 2.4 and above...mine was 0.6 so its no wonder im struggling so much so ive now been started on phosphate supplements and need regualr blood tests

As youve probable guessed following all this had 100% exhausted me so i went off to sleep...only to be woken up at midnight having a massive allergic reaction...gradually throughout the day i had been getting itchier and itchier and then by midnight i also had a full body rash. I could put my finger on what was causing it annd initially i thought it might have been the uniphylin...with taking this mornings dose and having no reaction it then clicked, it started straight after i had the dye put in my hip...and had been getting worse throughout the evening making me feel shit, so i guess thats another drug i can no longer have. Perfect.

I woke up this morning in agony though. I know the consultant warned me that with certain people, depending on what hip injury they have they can have bad pains through out the whole leg for the next few days..mand boy was he right. I could barly walk to day and i cant bend my knee without crying out in pain. I just hope it doesnt hang around.

Today i have officially made 35 baby hats so my first NICU box is complete. Im going to do another fair few amounts of hats though before i send them off as i want to get a great picture to send into asthma uk to show them the progress...please look through my previous blogs to find my just giving page...we really need more donation!!

TTFN

XXXX

Busy Bee

Alarms should not have been inveted. I hate them. I had to wake up early this morning because I had to go to the GP to have blood taken. I initially thought this day was going to be hell because the steroid nasal spray I ordered last week hadnt been authorised by the doctor. Its meant to take 24 hours, im currently on day 7 so now and urgent message had to be re sent to the doctor. I then went to log in to say I had arrived for my bloods - and the computer crashed, so I cued up and had to register like the good old days...the lady at reception was being so slow that by the time it was my tern, it was then showing I was ten minutes late. Not impressed. I should have my blood tests by Friday though and we will be able to see whether im going to need more medication for my phosphate. When we got home, as I was down stairs, me and the other half decided to finish the run we had built so that our three boys could finally run around again. We are so impressed with our handy work, what do you think:

After this I had to drop my other half into benardos so she could do her good deed of the week and I went home to bed as I was exhausted already...so much so I fell asleep untill she came home again which was roughlu 4.5 hours. Whoops. Its ok though, I made up good time by knitting 3 more baby hats this morning. It is coming along quickly now. Ive completed 19 altogether now and I have another potentially 2 people donating more wool to me to complete my challenge. Tonight I made my smallest hat so far, here is a picture of it next to my ventolin inhaler for a comparison:

Please continue to support me by donating just a small amount and also sharing my just giving page: https://www.justgiving.com/Charlie-Hockaday-Williams Tonight me and the lady have also put a menu together for our wedding meal and sent it back to the hotel we want to go to for pricing so hopfully by the end of next week we gave get our invites sent out. Im day as you can see has been rather scatty, but it has exhausted me so much that I am just finishing my physio and im off to try and sleep. TTFN XXXX

Dont Jinx It

Im not sure whether itll be premature to share even more good news or not but im finally happy that things might be starting to look up a little.

This morning myself and my other half went to the doctors to discuss her tablets. The reason for this is that we want her to be as healthy as possible for getting pregnant and of course we dont want her to be on any tablets that may cause harm to the baby.

The doctor was amazing, he discussed everything. Even things concerning me and i dont even go to that practice. He adjusted my partners medication and said he wanted to see us both in a month to see how we were getting on.

Following the great doctors review, we then text our donor explaining the recent circumstances and asked whether he would still be willing to donate even though it wasnt going to be me carrying anymore. He said yes. He was also very kind to us about the situation and how it has come about which i also thought was good natured of him.

Once all this was done, i had to take my other half to her volunteering job. Yesterday she baked some cakes as it was a birthday at the shop and she made an extra one for us to eat at home. They were friggin amazing. She made the same for my birthday in february and she bettered herself. My lady really does have fantastic talent.

In other news, I had a gentleman from Asthma UK ring me to discuss fundraising ideas with him. Hes amazed at the challenge i have set myself despite my deterioration in health and has sent me all the paperwork to fil in to get started. Once all that has been sent back ill be setting up a justgiving page and im going to try my hardest to raise as much money as humanly possible. We really need to find a better treatment if not a cure for Asthma.

Ive also managed to knit another hat tonight so i have a grand total of 7 now. I fear it still may take me a along time as it really hurts my muscles and joints but i think once the task is complete im going to be so chuffed!!

Hopfully you guys would sponsor me!?

On a sad note today ive had two allergic reactions today and my skin has felt like it has literally been on fire all day. Ive been in agony. I really hope i figure out wjat an earth is causing all these reactions!!

TTFN

XXXX

Another Appointment And Another Bit Of News

Firstly I forgot to say yesterday that I had the doctor ring me to update me about what they have found about my constant low Phosphate and that being: they need to do one more blood test to rule something out but ultimatly Im going to need supplements because my low phosphate is causing ny diaphram to not contract properly which in tern is reducing the amount of oxygen ive got pumping through my body...grand something else I have to battle with.

I also had another appointment in Derriford hospital in Plymouth today. It was with the immunology and allergy clinic. Initially I though this is going to be such a waste of time, they cant tell me anymore than what I know and as a result they cant actually do any more BUT that taught me.

The doctor was lovely, she talked through everything and explained why she had been asked ny lung doctor to review me. Aparently on the bloods they have taken it has shown that I have very little to if no immune system at all...lower than what it should be for a person on steroids so they have figured it is the huge reason for why I am contantly getting infections and constantly feeling poorly.

To see if they can find a treatment, I got given an injection on the spot and I have to have more bloods taken in 6 weeks time. It takes 1 month for the bloods to process ajd then ill get the results. If the bloods r still low following todays injection, I will either have to start more tablets or have an infusion or injections regularly all depending on my results.

She also stated me on a steroid nasal spray and changed me back to my old antihistamines but doubled the dose compared to what I was on.

Sadly though she did tell me that I shouldnt now or if at all every carry children. Not only could it kill me because my body wouldnt cope but half my meds would either harm my baby or cause further complications. Im gutted, there goes our plans for me to carry our first child. I mean its ok coz my partner can carry, but lets face it, its never going to be the same and ill technically never have a child of my own with my DNA etc. Theres always a bomb shell!!

TTFN

XXXX

Terrified

Im home...thats the main thing. By this though im home in body, not in mind. Two weeks ago, my other half went out for a walk with Dixie. About half an hour later it started to happen. I was so scared. I had no idea how long she would be and I couldny get through to her as she had no signal. So I sat there waiting. Nebbing. Worrying. When my lovely lady returned she was worried. She called an ambulance straight away. Because of how long I was sat there on my own nebbing, by the time the ambulance crew came my chest was silent. Honestly though I was only sat there for roughly 45 minutes and then we were waiting about 10 minutes for tge ambulance crew so not really that long considering how I used to leave things whilst living in the city. Being rushed into resus I knew what was coming...shit loads of blood gases and boy wasnt I fight. The nurse that was assigned to me was initially nice...and then found out I was gay. She gave my partner the most filfiest look ever, then chucked a peak flow meter at me, then yanked the neb mask off my face half way through a neb and told me I need to stop panicking. By this point I was telling my other half, one more bit of nasty treatment and I was leaving and taking myself to plymouth. The doctot that was assigned to me initially didnt want me to have any drugs either. I told her what treatment I needed but she said I wasnt poorly enough. Off she sends me for another xray as the first wasnt all that clear and then come back to me and says "I would like to do another blood gas as the first two shows signs off deterioration. If this one does also ill put up some magnesium and we will have to get ITU to take a look at you". Funnily enough because treatment hadnt been started, my third blood gas was worse again. After one lot of IV antibiotics, my cannula tissued and my arm blew up. I told the doctor but they didnt believe me so left it 3 hours for my arm to shrink before running the magnesium through it. And guess what, my arm blew up again and they had to recanulate. By this point of course I had been moved to the medical admissions unit to be closely monitored. I think it was around 5 am (though not entirly sure as I was asleep) and I got woken by the lady doctor again asking if I was ok as my observations were going off the chart. She listen to my chest and the next thing I know shes running away from me. Then I heard it, she was on the phone to ITU. 4 more blood gases later, 15liters of oxygen on a rebreathe mask and finally the magnesium, oh and of course an ITU doctor. Thankfully though at this point the remained wanting to keep an eye on me. By the time alk this had happened it was now morning (officially in hospital world) and I had the day med reg come to see me who thankfully was a respiratory reg. She was not impressed with how I had been treated and demanded I needed IV aminophylinne immediatly. Once this was up and running, and I had all the oxygen running through for roughly 12 hours I started to feel a little better. The lovely resp reg came back to see me at 8pm to make sure I was ok before going home. We had a good old chat and she told me that she spoke to my team at derriford and new abit more about my asthma which was going to help her treat me. Unfortunatly though the next day she was in clinic and wasnt able to review me herself. Once all the aminophylinne had run through, my partner took me in my wheelchair out to the corridor on my oxygen to see my friend. She wasnt allowed on the ward because she has an 8 month old son which is fair enough. Whilst out in the corridor, the resp doc saw me and asked how I was. I told her the truth. I was starting to feel shit again since the drip had been down. By 9pm, I had 4 doctirs at my bed. The resp reg couldnt make it herself to see me but she sent a team of docs into review me. Suprise suprise my chest was back to being silent...AGAIN. Another dose of magnesium and more aminophylinne and we were going through it all again...and ITU looki g after me on the ward because there were no beds up in ITU. (This following bit I cant actually remember, its what my partners told me) The next day, I was very very sleeepy. After lunch I got up for a wee and then I remember no more. Aparently I was very sleepy and not really responding. I had more magnesium and of course the aminophylinne was still running. My partner got asked whether she wanted my mum to drive down because I was really poorly. The next thing I know, my mum and step dad, my mother in law, plus 3 docs, 2 nurses an ITU reg and an ITU consultant was at my bed...and I was off to intensive care. The next 24 hours was all a bit of a blur and I hated it. Thankfully though the ITU team were fantastic, though left me bruised from foot to wrist...literally as they started using my feet to get blood and give me drugs. It turns out that the whole of the lower half my lungs were fully of infection. The nasty thing is, because the Infection was irritating my lungs so much I had now started coughing up blood. I had physios and doctors all working with me to help me get better. A week later I felt better. I was no where near safe but I couldnt cope being on ITU so I asked to go home if there was no beds on the resp ward. My pf was still only 150 but I agreed to stay in bed and not move...and ive stuck to my word. The thi g that got me the most in ITU was a CODP man got rushed in 2 days after me. He started iff breathing on his own. It then mived to NIV. And then it moved to him being tubed. Everything I could hear was exactly like when I was tubed. I didnt sleep at all since that man arrived. Each time I closed my eyes I got flash backs and was terrified. So on the wednesday the docs agreed for my mental health It would be safe for me to go home. I have my partner here looking after me and ITU arranged for the early intervention team to pay me a few visits to make sure I was still going in the right direction. Now that im home though, im still not sleeping well. Im napping on and off throughoit the afternoon. Then I fall asleep at mindnight for an hour and then im awake again till 0630. I think sleep for roughly another 1 - 2 and then im awake again. I hate it. I just want to sleep and recover. Thankfully though, I have a great friend who stayed with me through facebook when my attack started two weeks ago and this same friend has allowed me to use her netflix account so that I can watch films through out the night on my kindle whilst my other half and pooch are asleep besides me. One bonus about being awake at 5am is that you get to hear the birds waking up as everything else is silent. Its actually very peacful. TTFN XXXX

Just Another Day

Up nice and early today because I had OT coming to measure me up for the stair lift im having fitted. Thankfully thatll stop me falling on the stairs like I done yet again tonight. After all the measuring I then dropped my lovely girlfriend off at Bernados for her 3 hours of volunteering. Whilst she was there, I filled my time with walking Dixie, sorting our flowers out and chucking the dead ones, eating some diinner, nebbing and sleeping. When I woke I felt like absolute shit and rather puffed. As a result I had a quick (ish) dash to the mirror, noticed my lips were blue, so went and got my sats monitor...90%. Bollocks. Quick nebbing session before I had to get my lovely lady again. Thankfully im feeling a little better this afternoon and evening so ill see how I go before I ram any more steroids down my neck. Weve also found another feild to which we are allowed to walk Dixie and blinking heck she blinking loved being back in a feild again chasing a ball. For a squidgy puppy she aint half blinking adorable. Other random things about my life today...my GP receptionist rang me because my GP wants to see me so the had to arrange and appointnent. Its planned for the 28th. When I asked if she knew what it was with regards to, she thinks he said it was because I need to start a new medication. Im baffled as to what for so it should be interesting. And final news for the day to put a smile on your face...today ive lost another 2lb and a quarter in weight so since 6th January this year I have now lots 1stone and a quater and a grand total since the start of my weight loss last August of 3stone and a quarter. I just have another 2 stone to go and im at my healthy weight. Really hope I can do it. Hope your all well. TTFN XXXX

Something New

When I went to asda yesterday, I was gutted to find out that they had sold out of easter biscuits...I mean come on, its still a week away. To resolve this, my lovely girlfriend said that as shes never made them before, she would love to give them a try and blinking heck they tasted good. We have been controlled though. Weve only shared one between us for today andvwe have four more between us ove the next few days. I was mega impressed with how they turned out as shes never made them before. What do you think?! :

Even though it was only half a biscuit that I have eaten, I felt really bad so punished myself...and todays punishment is that I walked around the feild 4 times at three different stages of the day. To be ho esr, I think I have the beginnings of an obsession going on. Im so fixated on loosing weight and its now got to the point im now weighing at the beginning and end of everyday. I really dont know what to do. I think its started because I had climbed up to 16 and a half stone and so many doctors have told me that my weight would make my asthma worse. For me that was enough to scare me so I guess I have to loose it. After our second walk of the day, I was in agony so had some more morphine, snuggled with my lady and our pooch on the sofa and watched a film. Todays film was "exit himanity". Although at the beginning I though it was a really bizarre film, I soon came to liking it. Its weird because it has a narrator ever now and then. But it explained the in depths if what was going on just incase you didnt pick it out whilst it was made visually the first time. So for me its a film with a thumbs up. In crappy news...I think I have another infection brewing. Im getting a lot more puffed out, I have pain in my left lung and I am rather bubbly with my lungs. My temperature has only raised a small amount so id feel like a fraud going to the GP at this stage. Just hope it doesnt get to bad by next weekend as we r supposed to have a friend staying down and visiting is. Only time would tell I guess. TTFN XXXX

Why Cant One Day Be Simple!?

With an intentional early rise this morning, who knew that the day could turn out so god damn shit!! First off, we were intending on going swimming, but both my other half and her dad had to go to the doctors. My lady has been refered to someone a little more specialist to help out with a new problem that shes got (I say new, but weve been back and forth to the GP so many times over the last year, but theyve only just decided they cant control things any more). Sadly though, with her pops, I ended up having to drive him to hospital on the GPs orders. Hes had an increase in his shortness of breath over the last two days that his inhaler wasnt sorting and was getting a lot of chest pain. An update on him as of an hour ago after an xray, ecg and blood work, he may have a possible small PE. As a result, he is being kept in overnight just incase. I hope its nothing to bad, but on the other hand, maybe this could be a wake up call for my other halfs parents crappy diets and lack of exercise. But, will update you more on what is going on when we know more. I have to go pick up my mother in law who is currently still at hospital, im just hoping its pretty darn soon as im normally in bed by now. The other shit oart of today is that we had the council man come around today after he refused to put in a stair lift for me two which two medical professions told him I need and boy didnt I have yet another go at him. On a good note though, we are now getting a stair lift. On a bad note, hes only doing this for the mean time because he is basically kicking the four of us out. As aparently there are no homes in cornwall with two large double bedrooms either, me and my other half now need to venture on our own. Weve been told we have to sign up to home choice and start bidfing on properties. The council man also told us that they cant help us out anymore financially (because we told him were struggli.g to live off the parents on our income of benefits), he then also told us that the homes come unfurnished and that he also cant help us there either ( which im pissed about as ive just sold all my storage kit to which held my first flats living stuff. We are well and truly screwed. I went straight upstairs and just cried. We cant afford to live on our own, and the chance of me now getting a home that is suitable for my needs is zero to none. The council man ill just add said that if my other halfs parents got a house first, we would have to leave at the same time whether we had a home or not. So this twat is willing to make an ill and disabled person homeless. What the heck is the world come to. More stress to add to my life. I just want one day where I xan sit, chill and be my self. When do you think that may be!? TTFN XXXX

Maybe Some Progress!?

Thankfully, or shall I weirdly, our little puppy Dixie allowed us to sleep in untill 0900. Which was just what I needed after having the crapiest night sleep ever. Bouncing between coughing, flash backs and pain, my night was at the terrible end of the spectrum. I also woke up producing mass amounts of gunk, so it went straight in a sputumn pot and my inlaws were very kind to drop it in for me as they were heading past my doctors surgery. Fingers crossed that this may be the reasoning behind my lungs not being happy again. This moring was very chilled out, I put all three rabbits in the run for the day again, and made some home made Gnocchi, for mine and my other halfs tea, and it was blinking lush. Were using a lot of recipes from a book weve just purchased called 'A Girl Called Jack'. In this book the lady has made and adapted many different recipes to which are budget meals when living on £10 a week for food and they are also super healthy. I would definatly recommend it to anyone wanting cheap and healthy meals. Once my cooking session was over, I had to go to the doctors myself for 1440. I knew it was going to be a wasted appointment on my GPs side because it was following my conversation with an ass of a doctor last week, who wouldnt re prescribe my tablets because I was on so many. So in I walk to the GP (this one in oarticular us very good and I now wont see anyone else at the surgery). When I explained the situation on the phone and that im still getting the cramps, he said he would be more than happy to re prescribe me the drug again, and at a higher dose to see if it helps more. We also discussed the situation with my phosphate and that my local still gasnt responded to him as to whether or not there is a link to my asthma etc, do weve agreed that I will chase them up this week, and if they have a problem, I have to get them to ring this specific doctor and he will sort them out. We also discussed the fact my new antihistamines arnt working as effectively as I would like them because of the increase of reactions im having. We established that I am on triple the 'legal' dose, and if possible, leave it another few weeks to let my body ptoperly adjust and get use to the new drug, if not, then ill be changing over to one of the two alternatives to which I was given. In the mean time, my epi pens are not leaving my side. Just remembering, the twat of the doctor from the phone last week stated in my notes that I said GPs are a waste of time. I retold the nice doctor today that what I actually said was, I didnt want to be wasting GPs time coming all the way to the surgery when it can be dealt with over the phone. Shame it cant be removed from the system. Bonus though, todays visit was positive for me as I can restart my drugs, but a pain for the dictors as someone who is generally poorly and needs them, then couldnt have that much needed appointment. Im back off to Bridgwater tomorrow to see my old respiratory consultant and to also see my sister who is hopfully giving me a baby scan photo of her iggle piggle. So excited to see the real scan as the first was sent via picture message as we live ove 100 miles from each other. For now though, its film time with the HERsband and pup. TTFN XXXX

Such A Nit Wit

As you can tell from the title, I still havnt learnt from my mistakes. Last night I had to put my steroids up because I was struggling so much, and today my lung function still isnt good, but that still didnt get me to sit on my arse and chill. I had to take my other half to volunteering at lunch time, but because we wetevearly, we decided to walk around the local park with the puppy. That initially killed me espevially as I decided to walk tjis time instead of using my wheelchair. Once I got back home, I had to sort all the pets foods out and get the rabbits in the run. I then had to have some dinner, do my meds and then try and sort my pc out, all before I had to then go pick the other half from work. Stupidly though, I promise my other half that we could go to a place called Cardinham woods and go for a walk with the pup and also have a 'naughty hot chocolate' because it is so hilly though I refused to have someone push me in my chair so ended up walking again. Safly though we only got about 5 minutes in and my legs were giving way and I couldnt breathe, so we had to turn around and go sit gown. I was gutted. Steroid myopathy and brittle asthma are so dibitating and is slowly killing my independance and freedom. My flash back are also flaring back up again. More than the usual daily stuff. I think its because my body is struggling again and its scaring me for what might happen. Im hoping they will settle down again soon!! My pain has also gone ridiculous. This is my fault though. Because of trying for a baby, I have stopped taking my morphine as I dont want it risking causing any harm to the foetus at all. Im considering asking my GP to refer me to rhe pain team to get things back under control. In happy news though, this week I lost another pound in weight. That means I have one pound and three quaters to loose and ive lost another stone in weight which totaled up, thats three stone since last August, im so chuffed with regards to that!! Well, sorry for the depressing post, I just had to talk to someone and you guys seem perfect. TTFN XXXX

Happiness To Ignorance!!

As its Monday, its weigh day again. I was dreading it. Because of having flu last week, I didnt really eat much real food, just general crap so I figured I was bound to put weight on. But...I didnt, yay. I lost another 1 1/4 so I was chuffed. I have 2 3/4 pounds to go and ive lost 3 stone since last August. Im over the moon. Never thought I would be able to shift this steroid induced weight but with pure determination and the support from my other half we are getting through it together, to ehich I must add that she to lost weight this week also!! I dropped my other half off into town at lunch time for her to do her volunteering and I firstly went off to the Doctors to get my prescription ready for going awayvtomorrow to which they told me that because I only ordered them on Thursday they werent ready yet. I ask how long till they were and they responded with 1430. I walked out ubber pissed off as that was in less than two hours time. The thing that hacked me off even more was that she picked my drugs up off the side as they were ready and prepared in the basket, all they needed was a final check and to be put into a friggin bag. It would have taken 5 minutes if that to sort, but no I have to go all the way back out there tomorrow in the opposite direction to our mini break and hope that they have all my drugs for me!! After this cock up I then had to get back to town to go to the dentist. I had to have a very small filling as my nebulisers have started effecting my teeth. Bearing in mind I am disabled, to which the dentist surgery are aware of because I told them itll be difficult to get to them as they dont have a lift and are on a first floor and its two flights of stairs up. So bearing this in mind, I climb the stairs, sit and wait 40 mins as they are running behind which is also very uncomfortable for my hip and then finally get called in, to what looks like an obsticle course, to which my dentist didnt move anything to allow me getting into the chair any easier. At this point, other than calling my name, he still hasnt said a single word to me. He then tips the chair back without prewarning me and then stabs the needled straight into my upper gum...again without no pre warning. The treat ment then begins and it seems the dentist has finally found his voice, but only to say if the grinding hurts, raise your left hand. I expected to have one of those clothes protector bib things on so they didnt splash my clothes with anything, but no, nothing and my jumper gets drenched. Again pissed off. After hes finished, he raise the chair up but still hasnt said a word to me so I guess hes finished and struggle back through the obsticle course to get back to the door. On my way out, I ask he how long it is untill I need another appointment and he sits there pondering and then say hmm I guess a year. A year, one fucking year. With being on long term steroids and clearly getting damage from my medication, he wants to leave it a year. My last dentist wanted me with her every 4-6 months. The conclusion to this barbaric treatment is : typical nhs. I have to admit, I much prefer private dentistry, just wish there was on local that would excempt me being exempt from payment because of ESA.ooo I almost for got, on top of all this, hes got filling paste all over my two teeth and its clearly visable which has also pissed me off as its my front two teeth!! So, after my crazy appointment I go home to chill out. Im so stressed from it and have another headache as a result. Not what I need. TTFN XXXX

Flu-Urgh

Things got all to much this morning. I had a rough night and it continued through to this morning. My temperature is still sky high, the pain I have in my joints is ridiculous, ive never experienced anything so bad, my migraine is still here and theres so much more im suffering with. With it not shifting, I wasnt sure of what to do and I was getting worried so mu other half kindly rang the doctor for me. My partner did tell them that I wasnt able to drive because of how poorly I am and how drugged up on morphine I am to try and sort the pain. We had asked for a home visit but the doc who was talking on the phone was an assband said, no we wont get a home visit we either have to pay for a taxi or get a driend. Thankfully my partners dad offered to take me in, but it was really unfair. After being to the doctors, to which my other half had to do every step with me as I still have no coordination and I feel mega week, it turns out I have really bad flu. He said if theres any sign of it moving to my chest I have to be seen immediatly because of the obvious. Ive never had flu before and bloody hell I wouldnt wish it on anyone. The scary thing is ive had the flu jab so xan you imagine how id feel and how much worse id be if I never had the jab!! My other half has continued to be a star though. Really looking after me and literally not leaving my side other than to take the pup for a walk...which she didnt want to do because of leaving me but I guess its only fair!! Well, as its pancake day, and ive not managed to eat anything all day, im having some alpro soya almond milk pancakes bein made for me. I hope the I can both manage to eat them and keep them down. TTFN XXXX

New Achievements!!

What an early start it was this morning, one I wasnt wanting one bit, sadly though it had to be done because my other half had a hospital appointment which I was taking her to. Nothing major, just the tightening if her braces, the adding of two more blocks and the adding of a thicker wire all in preperation for her surgery towards the end of the year. I also had a doctors appointment this afternoon because im still worried about my low phostphate level. Im pretty sure something should be being done about it. Thankfully I pre book this appointment a week ago to guarantee it bein with the doctore I get on with. Whilst with him, he dictated a letter to my new local cons asking for his support re my phosphate just to see if there was a link between that dropping and my asthma. He also told me he has wrote on my behalf to the ambulance service so that the next time I have an attack, they dont sit and play. He also gave me a letter from my new cons explaining I had a pisitive test to the mannitol challenge I done a few weeks back, also that he wants me to start a different pill in the hope it may help my asthma...to which my gp at first was confused as in his words "he thought I was in a gay relationship" lol, I had to explain a little bless. All in all im pleased though I also lost another 3lb in weight this week, which gi es a grand total of 8 and 3/4 lb this year altogether. I know its coming off slowly, but im pleased with that, ive not gain any weight at all this year and the slower it comes of the higher chance of it stating off. Right!? Me and my other half also took our little puppy Dixie for a walk down the camel trail today. It was her first time down there where she was allowed to walk and we had her on the stretchy lead so that she could wander where she liked. She absolutly loved it. When she got tired though, she made us chuckle because she just sat there and looked back the way we came. Such a little character she is. Im off for my hip procedure tomorrow so you may not hear from me. Wish me luck!! TTFN XXXX

Wondering, thinking, worrying!!

This week has been the most stressful in a long long time.

It started last week with the doctors and my gp surgery. They decided they didnt want to prescribe my medication to which they decided not to tell me so when i finally got hold of a gp (three days later) my drugs had ran out and i was getting arsy. All would be ok if it wasnt a special ish drug that needs to be ordered into the pharmacy.

After sorting all of the above, i then go off to the doctors to pick up the late prescription and low and behold, another driver decides they want to drive into me. Thankfully i wasnt hurt but i was even more pissed at this point. I get all of her insurance details, name and number and i ring my insurance to start claiming through her. My insurance company ring me back on monday to tell me that, oh the driver isnt insured. Frigging perfect, this could only happen to me hey!!

Also on monday, i had to go back to the dental hospital to have my lump in my mouth rechecked and a date decided for when they want to do a biopsy. There i am sat in the chair and the consultant is making those weird hmm noises when something isnt right. He then goes off to the computer, after a few seconds he cones back to me and asks if i was free three oclock that day. I say that i am and i go back. It seems like they want to get this biopsy done quicker than originally stated. The biopsy itself didbt really hurt at all, he put a numbing gel all over my lip and gum first before jabbing me with a needle to use a local aneasthetic. Half an hour later, three lumps later and four stitches later and my lump has been removed and sent off for testing. The consultabt was a little concered because he expected the 'lump' to be a sac of fluid that would leak out as he sliced it, sadly though it was a solid lump. Once he got the biggest bit out the way, he then found another two lumps starting to grow deaper in my lip and a little lower down. He thinks he got everything but of course he cant promise. I also ended up with four stitches instead of the original two because of how much it had grown since he saw me two weeks ago. All in all the i am glad that the lump has gone. With how my luck has it though, two of those stitches fell out 4 hours later but thankfully there was no bleeding and the two ends have stayed together so ive not bothered going back. I have to go back on the 6th january to get the biopsy results. I really am praying its ok as ive been through this process befor when i had a tumor in my knee when i was 17. Thankfully that was bengin!!

On good notes though, last friday one of my friends had asked if i would take some photos of her 4 month old baby, to which of course i said yes. I took 138 photos and ended up liking 34. (I swear im far to fussy). Amazinly though they have turned out friggin great. So much so i have amazed myself. I sent three sneak previews to my friend on sunday just to show her some results and she cried with joy with how great they are. Im going back over to hers on the 17th to give her the rest just before christmas. Im excited to actually see her face with the results. She has also asked me to take photos next march when its her baby boys naming ceremony. Im really scared about this as i dont no how my lungs or muscles are going to be and ive never done 'professional' photos in this situation so im mega scared.

Well for now, this has been my life. Im off to another hospital apointment tomorrow for my hip and then off to mums for some tea and to exchange christmas presents. Following this im then driving to bristol to see my dad and two friends. We are going to be there untill sunday so its going to be one busy week. Joy!!

TTFN

XXXX

The Here And The Now!!

Recently things have been a little scatty and Im not all that sure what to make of it. I keep going through phases where I am really down but trying really hard not to tell the other half as I dont want to worry her, but sadly instead I seem to be snapping at here and getting frustrated at the little things that I used to fine with. I tried telling her that these little things have started to annoy me but she seemed to have laughed it off as if I was joking so now im not all that sure about what to do. Im hoping that its just because Ive had a pretty rough few weeks with my lungs and its just washing me out. Who knows!! With regards to my lungs, I went to the doctors last week because I have started really struggling asthma and infection wise. I have been put onto some basic antibiotics for now to see if it would help but sadly it hasnt done a huge amount. My peak flow is still super lower and my oxygen levels keep dipping to around 92%. Sophie wants me to go to hospital but I really dont think I need to go yet. I am off to the doctors again later today but I dont actually think there is a lot more they can do, but I guess ive ssen someone and thats all I can do. Financially things have been a little tough for both sophie and I which has really got us worried. we have had our money drop by just under £200 a month which has meant that we have a very small amount of money each month to help us get by. Were really not sure what we are going to do. We have now applied for careers for sophie as we have calculated that she spends around 40 hours or more a week looking after me, and she does a brilliant job at it and I wouldnt be able to survive without her help. I am also having appointments with the doctors because it has come to the stage were I feel I need a little more support mobility wise. I am falling over a lot more, my legs are giving way on me and I cant physically keep hold of my crutches because my muscles keep giving way. Ive not had a verdict as of yet but im sure I will let you know. On a positive note, I have lost 2 stone in weight since I have had my surgery so I am super happy, ok yes it has been because I cant physically eat all that much, but Im still surviving, so Im clearly getting enough food going into my body. Im also moving onto more solid foods which im also super happy with as I have missed eating "normal" food. Sophie and I are also still wedding planning, it was come up to around £3009 altogether to pay for the whole wedding so we now need to start saving and buying things slowly to achieve the best day of our lives. We have also attended our first wedding fair, sadly it was rather erm CRAP so we wont be attending one there again, but it gave us a good insight into what we could do and what is on the market at the moment. Well I think I have rambled enough now so I will leave you to it!! TTFN XXXX