The Joys Of An Asthmatics Life

Ventolin, salbutamol, puffer, inhaler, reliever. Recognise these words!? Im sure you have!! These are just what asthmatics use because they get out of breath right!? Overweight and dont exercise so use their "puffer" and carry on as if life never stopped. WAIT!!!!!!!!!!!!!!!!!!!!! Blinking heck well I have a shock for you. If you think that this is asthma defined you need to spend a day in my shoes, actually scrap that, ill give you the morning or the afternoon, you pick as you wouldnt cope a day. Asthma is not a few puffs of the blue and carry on where you left off. My life has been destroyed by asthma. My asthma is very different and suprisingly not many people have it which is why its not as well known. I have severe brittle asthma. I could be sat watching telly and then within a split second my lungs could decide that actually they didnt like that cold air that ive now started breathing in because of the winter months. Within that split second my oxygen levels will plummet, my co2 levels will rise to dangerous levels, I will become exhausted, tired, confused, SCARED. My life is hanging in the balance once again. I need drugs wuick. Quicker than quick infact. I need an ambulance, shit wheres the phone, shit I cant talk. Phew my girlfriend has walked into the room, 999 "ambulance"...amazing paramedics come within minutes because ive an emergency flag on my address alerting them of my asthma. They put a needle in my veins, they push drugs into my blood stream, they put and oxygen mask on my face with more nebulisers. The get me into the back of the ambulance, hook me up to all the monitors, the pre call the emergency room, blue lights go on, sirens blaring, 90mph down the dual carriageway, arrive in resus, consultant;nurses;junior doctors;itu team all waiting form my arrive, fuck where they taking my girlfriend please dont leave me on my own, doctors listen to my chest, its silent and no air is shifting, the stab a needle into the artery in my wrist to draw special blood, they test the blood and get instant result, results arnt good, more iv drugs being pumped into my system, muscles working harder than they should, doctors start getting really concerened, I move from resus to intensive care, they stab my artery again with a more perminant lline, they attatch a tighter fitting mask to my face, I remain like this for hours, finally drugs start kicking in, it becomes easier to breathe, my life is coming back to me. Ive survived another. Attack!! I guess me going through a breif outline of my life is like trying explain to a man the real pain women go through with Labour and sadly they will never know for real. For you, there is a very similar way to know how I feel, tape up ur nose so u cant breathe through it, put a normal average size drinking straw between your lips, now tape up the rest of your mouth so no air can get in other than through that straw. Struggling yet!? No, ok, now go and run for 20 minutes flat. You wish. You wouldnt make it 2 minutes!! Thats how I feel daily and when an attack shows its ugly face this struggling and fighting for breath feel intensifies. Ontop of this, I take many medications. These have side effects. I need to devide, do I want these side effects ir do I want to breathe!? Im not an idiot, I choose to breathe. Unfortunatly though this brings me to todays appoinyment with the doctor. One of the side effects from my medications is a muscle wasting disease. Ive now been told that theyve looked into my case. Theyve assessed everything. Theyve looked at alternative drugs. THERES NOTHING THEY CAN DO. My muscle disease I am told today will get worse. The only way it can remotely get better is by coming off the medications, but like I say, I dont and I cant breathe without these drugs. Currently its getting to the stage im struggling even more to hold my head up. Ive been given exercises to try and strengthen my neck muscles but im told not to do them too iften as I can rip them and then they are permanently damaged beyond repair. Inevitably I will end up like a newborn, I will not be able to hold my head up. So, back to my earlier question, do you want to spend a day in my shoes!? TTFN XXXX

Little Thing Mean A Lot

I just want to rant first to get it out the way. Cornwall Council literally should be under the definition for complete and utter PRICKS in the dictonary.

2 days ago I looked on our account to see what position we were at for the 3 proporties we were wanting for this week. We noticed that 1 had disappearded abd yet it was still stating we had made our maximum bids for this week. So the usual pattern happened, i emailed them telling them how pissed I was that something is wrong yet again. They replied stating that actually there is no issue and that we had still bid on the 3 proporties and they were still there. So last night I re checked the system and oh still not there so I took a picture and re emailed them stating if its still there then why has it still vanished, i wanted answers and ASAP as this weeks bidding was shutting at midnight last night. Funnily enough i had no reply, untill today. They said that actually, the owner of the proporty had decided that they didnt want to let out the flat anyone and had been removed, yet on the system they hadnt re allowed us to bid on another 3rd property meaning that now this week we have missed out on the chance to get out of this flat. Lets just say the council have had the full blown of me today. Ive questioned how they think they can get away with treating us like this. Asked them why they said we wouldnt be here long and yet 4 weeks on we are still here. Thats now nearly 4 weeks on that uve not been able to have a shower. 4 weeks that ive been isolated in this flat because i cant get my wheelchair in and out with me in it as there is steps and that 4 more weeks that our family has been torn apart. Ive questioned them how they would like to be honless for 4 weeks now not knowing where you are going to end up and worst of all would they allow theirselves to live in a flat that is unsuitable for them and has not started growing mould. Perfect. lets just say im still waiting for a reply!!

In other news, ive been buying more presents. Not for my other half this time but for Dixie. We know that we will be missing her first birthday and it fucking sucks. Each time i think about it i cry, u wouldnt miss ur childs first birthday!! So anyway ive been buying her presents. 2 that we are sending her in the post. 1 of them being an edible dog friendly birthday card and also a birthday cake thats dog friendly. Weve then got all her ither treats and toys stacking up ready for when she gets home as no doubt we will b missing her first christmas too so they shall be joing the pile on the side.

Tonight i have lit 13 candles on the window ledge because scarily and pretty soon myself and my other half are getting married...13 days to be exact ahhhhhh

Also, finally, we are hopefully meeting with our new donor on Monday to see if hes happy with who we are and if so, to sign contracts. All being well then, next Thursday we are restarting the journey of becoming a family. Yay.

Well, im off now, bloody tired!

TTFN

XXXX

Suprises!!

I know its super early for a blog but I figured I would use the clocks going back to my advantage. The lovely lady is still asleep and this blog is about her and I cant risk her seeing it!!

A few weeks ago my other half had said whilst watching Janie Olivers fifteen minute meals that she would love to go to his resturaunt as shes heard its amazing and top quality food. (I agreed as ive been to one). She said "if only we could afford it for my 21st Birthday". Told her that unfortunatly that more than likely wouldnt be possible simply because it cost so much and we can nooooo way afford it.

Hehe

Well, a few days ago I have just made it happen.

I got in contact with the reservations team through email (as when your other half is with you 24/7 because they look after you, it makes ringing very difficul) and they have been amazing.

They told me of everything that was available and what I could do.

Sooo, on the 25th of Novemember (which is her actual birthday) we have a table book at the Cornwall resturaunt for 7pm. as I told her it was for her 21st birthday, they said that on their plates during pudding etc and other little occasions, they will write birthday messages to her from the chefs. (Amazing!!!!!). Ive also had it arranged that they will be baking 12 cupcakes that will be displayed on a lush cake stand and brought over to our table at the end of the meal hehe.

They are amazing there. They have gone all out and really made her Birthday seem that little bit amazing.

Now all I have to do is try and keep it a secret for another 30 days else itll all be ruined.

TTFN

XXXX

Good Girl Gone Bad, Pissed, Annoyed, Fragile

Wow where has the last few dyas gone again. As you may have seen, the title is full of sarcasm and realism.

Lets start with my lungs and health all rolled into one. First off my lungs, ive had a really bad infections this week. On Friday i got put on more antibiotics and steroids put up to 40mg. Over the weekend i got worse and by monday i couldnt talk. I pushed my luck and went to the gp as really didnt want to go to hospital. My oxygen levels were 92% and i was really struggling. The doctor wanted me to go to hospital but we came to the compromise that we would increase my steroids even more and hope for the best. He said if by Thursday i was no better i had to go see them again. Thankfully, this morning all was better and my oxygen levels were back up to 95% and i was no longer nebbing every 2 hours.

The next bit of health was with regards to my bones. I had my second dexa scan after i had one 3 years ago and got told i had osteopeania. Thankfully as a whole the results say that ive not gone into the osteoparosis stage BUT my femur has shown some deterioration and my spine has shown it is crumbling pretty bad. Great.

Ive also had another pain team consultation and because ive not been able to decreased my codiene and when i have ive needed more morphine theyve doubled the dose of my morphine patch. At first i felt ok but now as the evening is going on im feeling very spaced out and a little weird.

A change from my health, to a friends health. Remember i mentioned a few weeks back about a very good friend who was super poorly, well things started getting better and even got to the stage she managed a few hours off oxygen and walked a little. Sadly though the next day she was extremely poorly again and has since been on the ventilator again for the past 2 days. I really feel bad, wish i could do something to help her. Hope she starts getting better super soon.

My poor other half bless her has had a bad few days. Shes been so worried about ne that its messed up her mental health a little and has sort of gone tunnel vision. Shes dropping lots of things, not really understanding basic tasks and unfortunatly yesterday somehow managed to leave the freezer door open slightly and 3/4 of the food defrosted and either had to be chucked or cooked. Ive tried telling her that its ok. No1 got hurt. No harm has been done and not to worry but she still feels really bad bless her. What annoys me the most is that her parents havnt given her basic life skills for living solo. She doesnt know the basic things about life and with me being poorly at the moment i really dont have the energy to actually guide her. Im trying but its making me very exhausted.
To cheer her up though we went charity shop shopping today to get her some new clothes and for her to have a change of enviornment.

On the wedding front, bloody hell its coming around far too quickly. On Tuesday we went and got another gift for a very special boy who will b walking us down the aisle and carrying our rings. We made him a build a bear and purchased a wedding tux to dress it in hehe.

Well my new morphine patch is really knocking me out so im off

TTFN

XXXX

Beyond The Imaginable

Just to warn you this post will be as scatty as they come.

Firstly, randomness; ever seen a cow nebuliser machine, i have and thanks to my addiction to ebay i am now the proud owner of a new cow shaped nebuliser machine that i have named Daisy. She lives next to my seat in the living room so i now no longer need to have to walk backwards and forwards to the bedroom just to have a neb

Secondly, joy and excitment; as you are all aware, we had a sperm donor who was helping us loads to try and have a child, sadly though the funds for travelling back and forth from Cornwall to Dorset was coming near to the end, and the donor had decided the only day he could do to help us was a Monday, which is near on impossible to have every month when you aim to go on your highest fertility peak, so we began the hunt for a new donor, who we have found. Or shall i say they found us. They libe in Plymouth so far closer and he seems very nice. Been chatting to him on facebook and he has a nice manner about him and hes agreed to help us as he feels we will be fantastic parents.

Thirdly, anger; the council tried to pull a fast one on us again, but believe me they are messing with the wrong person. Yesterday i had rang them to add a new local connection to our file. When i logged in last night we found out that our account had been closed and we needed to reapply. I done this to be on the safe side and today i contacted them to ask them what they were playing at. Their answer then was that because we had moved address we had a change in situation and that our banding would drop. Well, i asnt going to let it as i told them this address is an emeergency home given by them because we are homeless, 3 emails later full of massive comments of how inappropriate this flat is and how they are screwing us around and the higher ranking team contacted me back. Suprise suprise, they wont now change our banding. We will remain at a band B. Good!!

Finally, familied; on wednesday i mentioned to my other half that maybe she needed to arrange a meet up in a nuteral place for her and her sister to talk as its getting rediculous and sometime in the future they will need each other and they would want eachother in their lives. It seems to have gone well from what i can gather, just my other half is upset that not only will her sister still not come to the wedding, but she said we will look silly because were not wearing wedding dressing. She also said that my other half should get a job and that she shouldnt be looking after me and to top it off she said its stupid us having a child when we cant afford it. Thankfully my other half had said that actually infact us moving out on our own has made us better off with money. It soo shut her up.

Well i best be back to my knitting, got a fair fetw amount of nicu hats that still need making

TTFN

Xxxx

Skywire

So being subborn and not letting my health control my life, I saw a voucher on Groupon to go on a Skywire. This particular one is at the Eden Project and is 660m long and goes 60mph. perfection. it was amazing. I felt free and unrestricted. though I had to have help because of my rubbish muscles because I couldnt get into the Harness very well. I hope the video works as it was great and if you ever get the chance you should do it

TTFN XXXX

Experiences

With us still not having Dixie to keep us company, weve been trying to keep ourselves busy.

At the weekend i saw a voucher to have a skywire experience in the eden project.

So naturally i got us both a ticket lol.

The skywire is 660m long and you go at 60mph. Epic

It was fantastic, ive always wanted to do a skydive but couldnt because of my lungs so this is the next best thing.

My other half of course screamed the whole way down and may the instructor chuckle. I on the other hand got stuck trying to shuffle into the superman suite because of my muscle weakness. Oh the joys.

Well when we were there i paid for us to have a head cam...now we just need to find the laptop power cable within the flat to put it onto the pc lol.

TTFN

XXXX

Moving Forward

Yesterday ive finally got to a pain team appointment. Ive been having chronic on going pain, not just for my hip but because of the myopathy from the steroids. Unfortunatly at present no intervension is possible unless its with pain releif. Ive been maxing out on paracetamol, tramadol, codiene and oramorph with little to no effect so now ive been started on a tens machine which is hooked to my hip 24/7 and i turn it on for 1.5 hours every 4 times a day. Ive also been started on bupanorphine patch ontop of everything else. So far theres been no change other than the bupanorphine knocking me out and the tens machine causing pins and needles down my leg. My life seems like such an adventure lol.

Ubfortunatly, my friend who I mentioned a little while back, has remained in hospital and had started rehab and moved to a ward, sadly though today she has had to be taken back to intensive back and has been reventilated, really hope she continues to fight through this nasty infection that is still pumping through her body.

Weve had regular updates with regards to Dixie being at her foster mums. Initially we thought we have had to put her in the kennels as she wouldnt stop crying us which was resulting in noone sleeping. The foster mum had spoke to her husband and they decided that because she wasnt like a normal foster dog they looked after, they would let her upstairs in their sons room with him and suprise suprise, shes aparently the perfect house guest which is amazing to hear. So much so that the foster mum even felt she could let her off the lead over the feild today. Its lush to hear that shes doing so well. Just hope she remembers us when she comes home.

Thats all for now

TTFN

XXXX

Mixed

Now that ive got internet back for a little while and can catch up on lifes happenigs over the last 5 days i figured i would update u all.

On Saturday, our friends came over to help mover our rabbits and their homes over to the new flat. First stop tho was lidl as we needed a much. After all this i was so tired i could barely do anything so my job was to look after their son. Figured it was good enough and not to intense as i was beyond tired.

On sunday we had a very early start. This was the day we sadly had to say goodbye to Dixie as she was off ot her foster mum. To whom is absolutly lovely and has kept us updated daily. Sadly dixie has cired on the evenings and her foster mum aparently went and slept on the sofa with her. Feel so bad for her having to do that.

Amongst this on Sunday, we went via my sister to have snuggles with the nephew and to give him hes halloween outfit and also went via mums for a roast mmmm good stuff.

We had to go to the old house on sunday evening when we finally got back to cornwall to fill the last few bits of or kit and take them over to the flat. I think we got to sleep at 1am and had to be up by 730 as we had to go via the house on the way to my hospital appointment.

My appointment was with regards to the lump in my mouth. Aparently it is very similar to the one i had on my lip last christmas but much bigger. For healthy people they would be out under a general and have the whole gland taken out but because i stop breathing with generals hes going to try a different version. He is putting local in my mouth and taking off the top layer of my lump in the hope itll cause it to stop growing and even shrink. This is happening on the 22nd of this month. sadly though if this doesnt work ive no choice but to be put under.

With regards to the council we have finally been put up to a band be as they have decied weare and urgent priority to needing a home. Perfect

For now though we are settled in the flat and a lot happier than we were in the house.

im offski now though ready for pride of britain.

TTFN

XXXX

All Getting Too Much

This weekend is that last weekend we have in this home and to be honest I bloody glad.

I really feel sorry for my girlfriend, shes never lived in a home without her parents and theyve not given a flying fuck. Theyve not cared at all these last few weeks for how she feels. Bearing in mind she suffers severly with anxiety and depression.

As of today, her parents have left the house. Though they will be back as theyve left lots of shit behind. So we are here on our own untill Sunday.

Weve only had one friend who has helped us A LOT and we cant thank them enough. Whats really pissed me off is that initialy my girlfriends parents said that they will fire a van and move our stuff and their stuff. Then suddenly today they rocked up with a van and we werent allowed to put any stuff on it so im blinking glad that over the last week we have slowly been taking stuff over to our new flat.

Tonight they came back quickly to get something and then left whilst shouting bye from the bottom of the stairs. It wasnt a nice goodbye with any effection for my girlfriend at all and from past experiences at my end, when you leave tje family home its extremly upsetting and yet her parents actually i re phrase that, NONE of her family have even bothered to ask her how she is. I think its disgusting and its completly uncalled for.

Till this day aswell they are still treating us like we are five stating that we cant fill some holes in the wall from where we took our stuff down...bearing in mine 10 mo ths ago we decorate this room and had to fill in holes then...and if they think we are still children, you would think they would ask their own daughter how shes coping but no!

On a lighter note, yesterday we had our homeless officer contact us to give us an update. My doctors, ive no idea which one out of them all have finally decided to send in a medical report and the housing team have stated that we are a urgenty priority to be placed into a long term home and we have been bumped up to a B band so fingers crossed not long and we shall have our own home officially.

On a safer not though, weve only 2 more nights and one long day left with Dixie. I was sorting her stuff out earlier ready to go to the foster home abd my hesrt was breaking. I hate the fact that my girlfriends parents are being so nasty as to not have her meaning we have to put her in a home 3 hours away from us. Im gutted. I mean come on, you wouldnt purposly give up your child because of a housing situatio  so why are we being forced to give up our puppy. I hate it. Just got to pray that we get our permenant home pretty bloody soon.

Because my girlfriend is clearly breaking down, ive done a little suprise for her. Ive made a card on moonpig to welcome her to her new home with me and ive also ordered some personalised cup coasters with 4 pictures on. One big one of us 2 and the  3 little ones of Dixie so hopefully thatll cheer her up.

For now though im off as im wasting precious time with Dixie

TTFN

XXXX