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

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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

Fumming

So, today my partners sister and her girlfriend have travelled down from Bristol to help their parents redecorate their new home and move bits and pieces over there.

I am honestly glad that in the last hour they have only just got home here and weve been up in our room. Though no suprise there.

This isnt the bit im fuming about though as they can do what they like, the bit thats really pissed me off is the fact of, im there stood in the bathroom filling the jug up with water ready for my hot chocolate -baring in mind the light it on and water is pouring into a metal jug which in itself is noisey- and my partners sister comes up the stairs and slames the door into me, knocks me off balance and hurts me and all she says is "oh" and walks away.

Im not impressed at all. The way she is treating me just because me and my girlfriend have set a date for the wedding and they arnt invited to the ceremony is absolutly rediculous.

She knows about my ill health, my unstableness and my muscles disease and yet after doing all that to me she cant even apologise and then leaves me to struggle to regain myself.

You wouldnt have though that she was in the medical professional because shes got no care to her at all and to be honest, i dont even understand anyones comprehension for doing things that hurt people for no reason. Yes granted she may not have seen me, but she could have still said sorry and she certainly could of helped me out following it all.

Rant over

TTFN
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Emotions Running High

Two different ends of the spectrum it turned out to be yesterday.

With all the recent news with us now having to move by the 6th October we were getting to the point we needed as much help as possible. Last friday we got assigned a housing officer who had then rang me on Monday to talk things through. We were supposed to receive a huge yellow form to fill out to be able to get us the support for a home. This hadnt arrived so my and my other half woke up super early yesterday and got to the council house by 9am. Doing this ensured there would be no other people waiting in front of us. We also met our housing officer who is amazing. Compared to many other people within the council she really does care and want to help. She helped us fill in all the paperwork, had been looking online to see f there was a private bungalow or flat we can have for now and they would pay the deposite (sadly there are none) and then she said she was off to speak to the homeless team and also increase our banding on the council list. Although this doesnt make me happy as we still have no home, its reasuring to know that we are being helped the best way possible.

Following all this, we then had to drive up to Taunton to pick up my sister, brother in law and baby nephew and then we had to drive over to my mum in Bridgwater.
Our nan was there which was great as weve not seen her in a little while as she lives in Manchester and of course this was the first time to which my nan met both my girlfriend and our baby nephew (her great grandson). The day was amazing. Was such a fantastic experience to be in a room with 4 generations. Was smiling the whole way home.

Of course though im worried about my mum. She has become very poorly with worry about both mine and my girlfriends health and home situation and of course no matter what i say, untill we have a place to go to, she will keep stressing about the sotuation.
On top of this, my mum had to go to the doctors today as she was a little concerened. It turbs out she has a 2cm lump having grown in her breast so shes now been refered for urgery examination, treatment, scanes and biopsies.

Nothing ever runs smoothly in life

TTFN

XXXX

New Adventure But Yet More Stress

What a friggin hell bound few days.

Spoke to our housing officer yesterday who has asked us to get a letter from our mother in law stating we will be homeless by October 6th. 8 hours after i had asked for this letter, it still didnt get wrote so as  you can tell i was pissed. My father in laws answer was well they arnt going there till wednesday so theres no rush. They finally done it at 10pm last night and asked if it was good enough so my partner said yes. Nothing more or less came from her mouth yet her mouth still insisted on saying "oh well dont sound to enthusiastic by it then". I mean come on, are you for real, this is an official bit of black and white paper saying that in less than 4 weeks me and my girlfriend have no home.

On top of all this, our housing officer has stated that they should have given us more notice, what theyve done by leaving it this late is complete unfair...but to be honest, both u and i knew that.

We may have to temporarily get rid of Dixie also which we are gutted about and thats basically because 95% of temporary accomidation doesnt allow animals.

On a semi good note, i had another hospital appointment today with regards to my lungs and immune system. Not sure if you remember, but 3 months ago i had bloods taken, then 6 weeks post that i had an injection and then another set of bloods to see if the injection work. As i had another 3 infections i knew in my heart it didnt work. Aparently my first set of bloods showed my immunoglobbins to be at 38 (these are the bits that fight off colds and infections). Once i had the injection my level should have atleast trippled to 114...mine went up by 4. Yes FOUR. My level was a grand total of 42. perfect. So for some unknown reason my immune system doesnt want to function and even the flu and pneumonia injections i get every year, my body seems to be resistant to which explains why ive still had flu and still had a stupid amount of infections within the last year alone. So now i guess your wondering whats happens about this. Well, u know these amazing people who give blood (my girlfriend and a very good pen friend L(u know who u r)) the blood they donte get divided into three parts, the red stuff to aneamic people, the clear stuff (plasma) to people with low platlet count and the straw coloured stuff to people like me. This is their immunoglobbins so essentially its their immune system. Myself and my other half have chosen to do the treatment at home for atleast once a week for the next year. We will be taught how to administer it through a needle in my tummy and two syringe drivers. I will be gettong 2 very large boxes of fluid donations (yuk) delivered to me to make me better.

But heres the sucky bit, because of our housing situation, we have to do the first 3 months at hospital. Purly because if we got put in a hostel, for one we cant have the drugs delivered there and two if andrug addict sees ive got needles we are open to being attacked. So yet another shit pain in therear we have to deal with.

Well for now. Life goes on and i have to be extremly greatful that not only go i have my wife to be being enthusiastic to help me administer my immunoglobbins but also i have to be extremely greatful for the amazing people that give blood. Without them my weird immune system would kill me!!

TTFN
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What If?!

Ever wondered what if...

I do every day!!

What if my lungs were healthy?!

What if my muscles didnt choose to want a progressive disease?!

What if my immune system was normal?!

What if my parents never got a divorse?!

What if my house never caught fire when i was 16?!

What if i managed to get to my uni placement and became a paramedic?!

What if i hadnt met my future wife?!

What if, what if what if?!

The list is endless!!

My latest what if, what if we dont get a home by October 4th!?

Im so blinking scared about everything and this isnt just because we will potentially be homeless but its because a lot of my life so far has ended up going in the wrong direction, it hasnt gone as ive planned!!

So, like before, have you ever though what if!?

TTFN

XXXX

Its Official

We had the council man come around at 10am as planned today to check over out current home...during this meeting my partners parents had to decide on whether they wanted to take the bungalow they had been offered. Up untill the moment the council man her parents were still not convinced they wanted to move...and then once he left, they came up and told us they are moving into the bungalow. This now means that myself and my partner have to be out of our current home with in 4 weeks.

We r then officially homless.

Were going to start packing because either way we have to go.

Ive so many emotions right now. Im also scared for my health.

TTFN

XXXX

Whens It Going To End?!

My title is perfect for this present moment in time.

Today, I finally managed to get an emergency appointment at my dentist for the lump in my mouth. I was not impressed though. My appointment was at 1210. I got there at 12 as I hate being late for things. Next thing I know its 1245 and I can hear them nattering about their upcoming weekend so I went to the desk and said not being funny but its pushing on and ive another appointment at 1pm. So the dentist goes back to her room fiddles about and then comes and gets me. I sit in the chair and she said right today we are doing a filling...i stared at her and said i think your not. Im coming as an emergency to get my lump looked out. Finally we get down to business and it turns out i was right. Its something called a Ranula. Unfortunatly though I have to be refered to a surgeon to have surgery to not only remove the lump but also the offending syliva duct and glad as for some unknown reason its become damaged. She also said i need biopses because of how angry it looks...stupid thing is though she said ill here back from the surgeon within 8 weeks. Im not happy especially if it turns out to be Cancer. Im not looking forward to it because what could be a day case procedure cant happen for me. I stop breathing with aneasthetics and need ITU input. Great.

In other news. My in laws went and viewed thier potential new house and when they come back they were happy about how it looked. We now have a man coming on friday to sort this house out and if they like their new place they sign the contract on Friday too. They then get the keys and can move in on Monday. We all also have to be out of this house within 4 weeks. Great.

Im also having a crap day as this time last year i had my second respiratory arrest and im getting really bad flash backs.

Thats all for now

TTFN

XXXX

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

Fear

Ever heard of a song called "here is the fear" by Kareb Jones!?

I have!! She sang at my Confirmation when i was 17 and this song has stuck with me. It help me when i was in a house fire a few years ago and it has also helped me when i was in a relationship that turned violent.

It remains with me till this day and i keep playing it in my head right now.

the reasoning behind this is because me and my partner are still in the dark for whether we could be homless for good in a few weeks.

As you know, last friday my partners parents got offered a bungalow to live in instead of this house. Theu have voewed the outside and have measured up all their furniture and are currently waiting for a phone call so they could view the inside.

We of course havnt been told this as such, we just happen to be in the next room and they are talking about everything.

I keep fearing that we wont have anywhere to live. That mine and my partners health is going to deteriorate drastically through all the moves and money worries. I also fear that all this will put me in hospital.

All i want to do now is end my life. If i want around, my partner wouldnt have all thos hell from her family about us. She wouldnt have to move and have the threat of having no house and she would be stable mentally...today i truly cant be botherd. All ive done medication wise is my morning tablets. i dont want to take anything else. If i no longer exist within this house then there is no strain on anyone. No hassle for who i am and no stress for who my partners with.

Fear is the biggest mental worry a human can ever have.

Today its hit me hard

TTFN

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