Overwhelmed

Just woke up after falling asleep and its all abit weird in my head. So much has happened and its now getting to me.

Firstly,my friend i told u about is getting better. Shes now out of the critical stage and back with us talking and growing strong. Thank goodness. So pleased as was ubber worried.

The next thing being that Dixie has finally had someone say and be willing to foster her whilst we are in our temp place. Sadly it is 3 hours away but weve just got to be lucky that shes found a home which equally means we dont have to give her up long term as that would be heart breaking.

Next up is this bloody flat. I hate it. Its horrible. Its not ideal for me at all. To top it off the landlord is an ass. Weve begged him for Dixie to come with us and even said we would pay for cleaners to come in when we leave but no. He refused to sort out the water in the kitchen as for the last week weve had none. So i had to get on the floor to look and sort which is never good as i cant get off the bloody floor so my other half had to help me. Next up we went there to day to drop more stuff off and the bloody bay window roof is being ripped out and we hadnt been told. Im pretty sure we had to have 48 hours notice and yet we had none. We also still havnt received our electric key to be able to put money on the electric. We got told last wednesday 24 hours and we will have it. But no,again nothing. Which means weve £3 on the meter, a freezer full of food and i cant neb. Grand. It all just seems a night mare.

All of this and im also shitting it about money. I know we will be fine but im a huge ocd worry bean about money to the extent i have a book, write what goes in and out and what weve left for the month and then each day i write how much has been spent and then calculate how much remains. At the moment it seems like we are £200 better off living independantly but weve not hade the correct amount of bills yet so all that could change.

Im also confused as to whats happening about my immunology infusions as ive not been contacted and its been nearly a month now.

The wedding is coming up and i know longer have any idea of what is left to buy as its all in stupid boxes

My other halfs 21st is also coming up and im worrying that we wont have the money for me to make it special for her.

To tope it off, today it seems like my pharmacy wanted to kill me again. Remember the error a few weeks back about my steroids. Well i made a complaint and that got sorted BUT today, as usuall walking out the door i checked my drugs so i didnt drive all the way home and see a mistake. I opened the bag and saw the words Sando-k and though what the heck i dont take that. I take phosphate. Took it back in and said er uve given me the complete wrong drug. Her answer was "i though it was strange when i was second checking it" i replied saying well its a gokd job i know my drugs else this time next week i could have been dead. Its not like it was a simple error or omeprazole or anything it was a potential fatality error. Its shocking.

TTFN

XXXX

Happiness

Just flying by to say

WEVE GOT A HOME!!!!!!!!!!

Ok its only a temporary emergency accomadation but it means that we wont be homeless by the 6th October as weve been given the keys today

Happy

Downside, we cant bring our puppy with us to this temporary place so were trying to get her fostered untill we can have her back.

Sad

TTFN

XXXX

Bloody Council

Today was the day that i was getting arsy with the council if they hadnt started responding to me with answers about whats happening with us with regards to being rehomes.

By about 11am i had a phone, when they said it was the council i was think; great about bloody time...boy wasnt i mistaken. It was the council saying that they wont accept the paperwork that got sent to them last week by the homeless team. As always i questioned why and blinking heck it made me boil and they certainly knew about it. The reason the wont accept it is because we "just have asthma and just have depression" so it doesnt make us a priority and they more than likely wont get us a home by the 6th of October. By this point i was near on screaming down the phone asking if there was medical professionals on the panel, and guess what, there isnt. Finding out this then made me scream at her about how would they know what my BRITTLE asthma was like and what my SEVERE PTSD and my other halfs SEVERE DEPRESSION AND ANXIETY was like. I asked her if she was one of the panels members to which she said yes, so my next question was, have u ever heard of proximal myopathy and know what it does...and guess what, her answer was no. So i told her we should not all be tarred with the same brush, for one BRITTLE asthma is nowhere near anything like WORK RELATED asthma.

So all in all, myself and my girlfriend wont be getting a home by the 6th October and despite the fact im on higher rate DLA for both componants and the support section of ESA,  it means nothing because our illnessesare basic.

We then thought find, screw you council will go private...but wait...we cant. Because we dont work, wet need a guarantor and we dont have one.

All in alm we are fucked!!!!!!!!!!!

TTFN

XXXX

Small Update

Today I was meant to be going for a hospital appointment for my hip. Sadly though it didnt happen. The consultant rang me to say that not all the CT scan results had got back to him so he didnt want to drag me all the way out there to only give me half the information. So i was pleased they rung just annoyed were nine the wise for whats going on.

The lump in my mouth has become rediculously large. Its now bigger than a golf ball and i can barely eat anything tyat cant be sucked or anything that not liquid. Have to wait another 2 weeks before i even get reviewed let alone operated on.

With regards to the housing situation, well thats stull just as bollocks. Weve heard no more, still not been increased with the banding. My partners parents are continuing to be nasty towards us which is causing my lungs to be shit. Woke up this morning and my sats were 93 and i had so much pain in my lungs...

Lastly, my friend. Things arnt to good at all. She did end up needing ECMO because she was so poorly and they then took her down gor open heart surgery the next day. Things are not good though. Theres lots of complications going on and although she got off the ventilator yesterday, shes had to go back onto it todag and shes starting to deteriorate again. Hate that so many of my friends r suffering because of crap health.

TTFN

XXXX

Worried

Today i learnt that a very good friend of mine is extremly poorly and as we speak shes being transfered to a different hospital to get a different level of care.

Its very touch and go.

Weve been told shes at a critical stage and without this much needed operation theres a very high chance she wont survive.

Im scared. Shes been an amazing friend. Yes weve never met but we email a fair few times a week and i feel like ive known her for years.

Im currently being updated by another friend of hers and i really feel for her as she just doesnt know what to do and im angry with myself for not living closer to be able to help.

My otherhalf keeps saying to me, let me know if u want a hug or if you get to sad but i just cant bring myself to show her me being weak. Weve got to much to do and fight for.

All i know is, my friend MUST pull through, i need her!!

TTFN

XXXX

Stolen From A friend For Invisable Illness Week

Admittedly this has been stolen but of course with my answers. It truly shows that to be poorly, disabled or struggling it doesnt have to be usually seen... 1. The illness I live with is: Asthma - to define it a little more, Brittle asthma. This is very similar to asthma but its more severe. I have regular attacks, rediculous amount of medications and frequent trips to hoapital. 2. I was diagnosed with it in the year: 1991. I was 3 months old 3. But I had symptoms since: a few days old that then gradually got worse and worse 4. The biggest adjustment I’ve had to make is: realising that I cant do the things I use to and I shouldnt be embarrassed if I need to take my meds in public. 5. Most people assume: "That it's just Asthma" - I cant breathe and I have a few puffs of the blue and im sorted. They dont see the devestation of watching your friends die or needing people to actually look after u because your lung function is below half of what it should be. 6. The hardest part about mornings are: waking up and it taking 2 hours to get ready. Know not just getting washed and dressed. But also eating, taking tablets and doing and hours worth of.nebulisers before I can move. 7. My favorite medical TV show is: Casualty and Holby city 8. A gadget I couldn’t live without is: I want to be greedy.as I have three...my camera, photography is my passion...my mobile, it literally never leaves my side.and my kindle, not being able to.read, play games and.browse thee net whilst doing my meds is a nightmare. 9. The hardest part about nights are: not actually sleeping. Being led there with ur girlfriend to ur right and ur puppy to ur left taking it in turns to snore and u literally just cant sleep. 10. Each day I take : far to much to write here but.4 different types.of nebulisers, a draw full of tablets and a bit more 11. Regarding alternative treatments I: personally I would never stop my current treatments to try thwm. There is no guaranty that they would work and im.not about to risk my life over it. 12. If I had to choose between an invisible illness or visible I would choose: visible, no questioning that. Id get more respect for a dibilitating illness. 13. Regarding working and career: I use to.work.in.bristol childrens hospital and my dream was to become a.paramedic...asthma.stole.that from.me. 14. People would be surprised to know: that not every pwrson with the same illness ends up in the same situation of poorly co trolled health. Not everyone takes the exact.same.meds.and not everyone.has to be exactly how the medical textbooks say its meant to be. 15. The hardest thing to accept about my illness is: im not the.person I use to be. I cant do what I use to. I cant eat what I use to. Adaptions have to.be made 16. Something I never thought I could do with my illness that I did was: find someone to love who loves me for who I am and who doesnt allow my health needs to get in the way between us. 17. The commercials/adverts about my illness: sadly there arnt any. Adverts cost to.much mo.ey for awarness.to be raised. Its all down to AUK and sufferers. 18. Something I really miss doing since I was diagnosed is: being active. I was the sportiest person I know and I cant even walk up a.flight of.stairs anymore. 19. It was really hard to have to give up; Dairy , if I.eat any form.I get super poorly...though sometimes I just cant resiat it. 20. A new hobby I have taken up since my diagnosis is: knitting 21. If I could have one day of feeling normal again I would:go on holiday abroad. Be able to pass a.fit to fly test and go on the holiday to florida that I had to miss this year with my.best friend 22. My illness has taught me: To stay positive. Never let a day pass with out telling the ones u love that u love them. Treat every day as if it was ur last and enjoy yourself. 23. Want to know a secret? My other half has no link to my blog at all, she never reads anything on.here as this is a.space for.me to.rant about life without it having to upset her. 24. But I love it when people: share things with voth myself and my.other half. We are a.team and stick together. 25. My favorite motto, scripture, quote that gets me through tough times is: live life, love laughter. Keep smilling. Never regret. 26. When someone is diagnosed I’d like to tell them:this isnt a.life sentence, u control ir asthma, not ur asthma control u. 27. Something that has surprised me about living with an illness is: the lack of empathy from people who know nothing.about ur daily living with this disease. 28. The nicest thing someone did for me when I wasn’t feeling well was: send my girlfriend up to me.as a.suprise visit when I was on.a.breathing machine 200 miles.away from her. 29. I’m involved with Invisible Illness Awarness week because: people need to be made aware. An understanding needs to.be given and taught. 30. The fact that you read this list makes me feel: like im.teaching people. Giving an insight into my life. Proving there is life after a diagnosis and that there are many people out there.suffering with a disease that cannot be seen TTFN XXXX

Quick Update

Ok in short, im still very much depressed, if not worse, im still packing and we still have no where to live in 2.5 weeks.

To top things off, out middly rabbit has now come down with a respiratory infection so hes now onnantibiotics twice a day. Something we really didnt need right now.

There has been progress though, tomorrow at 2pm we are having an interview with the homeless team. We blinking hope that they can actually do something for us. So far they seem great though. Today after the appointment was made they faxed my GP asking for a full report about my health which sounds positive though annoyingly theyve not received the update from immunology about my new treatment which we really could of done with. Though ive left the secretary a message and i just pray they can help us out also.

TTFN

XXXX