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

Good vs Bad

Firstly yesterday. Bloody hell I was a right state. My partner was at the gym and i decided it would be a great idea to take our puppy for a walk. All was going well untill we got to a walkway that ran alongside a railway track. At the point of us getting to the track a steam train went by. Our puppy decided it was a great idea to try and chase it. So running as fast as she could her lead stretched as far as possible causing me to be pulled and i fell over which somehow caused her lead to unhook from her harness and she was gone. Because of my asthma and muscles disease i couldnt get to her. A well, undisabled person would of been able to chase their puppy and get them back but for me i couldnt. Plus i was super hurting from falling. At the end of the lane there was a cross roads that led to a road so i had every thought going through my head. I even had it that she had got onto the train track.

I rang the police and the wouldnt help, they told me to ring the non emergency police to which i done...once i got through they refused to help me and told me the emergency services shouldnt have told me to ring them. He told me to ring the council to get the dog warden. Once i got through to them (25minutes later) all they done was take my details just incase someone found her.

Thankfully a fellow dog walker saw me in a complete state and went hunting for her. She also gave me tasks to do whilst i stayed put just incase our puppy came back. I put a shout out on fb, i also rang to local radion and they also done a shout out for us and we rang around the local vets.

2 hours later i had a missed call and a man slowly drove past me asking for a street. That street being where i lived and as soon as i started talking, my voice must of been recognised as next thing i know my puppy jumped up in the back of his carmand went mental for me. (I didnt see her straight away as i was on the floor). The extremely kind man found her about a mile away looking like she was running away from something. I hate to think what was going through her head. As all i know is i was stressed, devestated and in a right straight. Its like a part of my heart had been taken out. Once home and since yesterday, our puppy has been super clingy and wont be in a room on her own so is following us everywhere.

Thanks to the pure kidness of some local people, we have our little pup back but i still keep thinking of the worse...

In good news though, i had a letter through the post today, and i was dreading it as there was a stamp on the front from the muscular dystrophy campaign.

I opened it up think the worst and that they wouldnt consider my application for a grant to get a mobility scooter because of the lack of evidence BUT they stated that theyve reviewed me as an emergency case and have granted me the top amount of £1000 to get the scooter that i had qouted for me as it was made specificly for me. All i need now is to get a further grant of £249 and the scooter have been paid in full so if anyone knows of a great charity that would be able to help me then please let me know...who knows, having this scooter could of prevented me from falling yesterday meaning our puppy wouldnt have gone missing

TTFN

XXXX

Muscles

Finally we managed to go out today with our amazing friends to a place called siblyback lake.

It was amazing, the sun was shinning and it wasnt to hot so it wasnt hell to breathe.

Sadly though because life sucks when i got home i couldnt breathe. All i done was walk up the stairs instead of using the stair lift and my sats plummited to 85%. So straight on the nebs i go.

I have then slept all afternoon since.

Once i woke up, my muscles have completly gone. I literally cant sit up. I cant lift my arms at all and im generally feeling like a jellyfish.

I absolutly hate having this disease.

Its utter shit!!

TTFN

XXXX

Friends

When life is a little down, all you really need is friends.

Yes you guessed it, we managed to get out and meet up for lunch with our friend and her son.

We didnt manage much else before that as i was so exhausted.

On our trip out though we managed to post a friend a present which we are praying she will het before shes admitted to hospital next week, we purchased a fair few more baby bits for my sister ready for the baby but these arnt clothes, these are more essential stuff like wet wipes, johnsons baby stuff, sudocrem, nappy sacks and more little bits like that. We also got another lush pastel wool and some ribbon for the baby blanket im knitting once i finish my 6 hats a day.

To say im exhausted now though is a ahuge understatement.

I feel really weak and i cant actually even lift my arms anymore so im a little gutted. I honestly think that this weekend is going to be for recovery and that only.

TTFN

XXXX

Finally A Smile Has Broken Through

The simple things in life really do come for freet.

Today i have been unable to get out of bed at all, my muscles have been so weak and i just cant breathe because of this infection so instead ive knitted 8 more hats for my NICU units challenge.

Whilst upstairs doing this, my beautiful other half has been up with me keeping me company doing her wood art ready for the craft fair we are going to.

The meaning behind my title is that all day weve just been chilling listening to my itunes list and my lush girlfriend has been singing away...and she is a bloody good singer.

This has literally just gave me both and internal and external smile.

She really is the reason i push to live. If it wasnt for her, her talents and her general love for everything and everyone i would have given up ages ago.

TTFN

XXXX

Because my lady is so talented (im praying this works) ive uploaded her singing...i love her voice!!

Just A Few Hours Of Normality

Some may say that 2 and a bit hours out the house for some "normality" is pathetic, but for me, it took every last inch of breath and energy.

I saw a banner a few weeks ago for a festival in Lostwethial called Lostfest so i decided that myself and my partner deserved a break from the house and we went a long.

Granted it wasnt as good as we hoped it would be but the rain stayed away and at the end of it we saw something other than the four walls of our bedroom.

On the way back we stopped by a huge discount store called trago and we picked ip another 4 balls of wool. I then completed 2 more baby hats and a templete for some scratch mittens.

Of course just doing this few hours of stuff exhausted ne beyond beleif and i used a whole inhaler whilst out and about. Both my lungs and muscles really struggled to cope. As a result i then slept for 4 hours this afternoon trying to recover.

Dont get me wrong, i love the fact i have got out the house eventually just to mosey around, but im still cheesed off for what it done to my body as a result.

I cant wait to start feeling "human" again. What ever that is. As i can no longer remember!

TTFN

XXXX

Give Or Take

Apologies to all my followers for not blogging last night but as you know my other halfs dad is currently in hospital and as no one else apart from me can drive I have been running around like a headless chicken. As a result, last night I was really poorly and just went to bed. Of course I dont have to do all this running around, but the way I see it is that when im next in hospital they would do the same for me. They would run my other half up and back from the hospital to visit me, they would bring me items I need and they woyld try and keep my spirits up so in my head it means I have to do the same for them. I wish I didnt think like that but I just cant see any other way around things. We think though that her dad may be home later today but annoying I still have to drive the 45 minutes to the hospital and then the 45 minutes home again. I also have to run my other half back to the same hospital tomorrow as she has an appointment and then I have to drive to Taunton on Wednesday which is 2 and a half hours to get there for a hispital appointment for myself. I wish I didnt drive. It hurts me so much. My muscles have gotten weaker and weakers because of the extra strain on them and now I literally feel like shit. I guess these things ha e to happen though. Thats what families do, they come together in times of need. TTFN XXXX

Overdone It Again!!

I knew today was going to not only but busy but also hectic and stressful. Thanks to our darling pup, we were awake at 7am so just decided the day may aswell begin. After sorting out the rest of our pets and eating breakfast we headed off to the swimming pool. I told myself I was doing 100 lengths as punishment for eating rubbish food yesterday, and, I done it but it killed me. As a result tonight both my lungs and muscles have officially given up. When we left the swimming pool we had to drive round to the tip and unload a car full of crap that I just can no longer keep since moving in with my other half. It was sad to see many things go, but heres to the future right!? We finally manged to get home at lunch to which my other half set off for doing the final touches to the cake ready for the naming ceremony tomorrow. I on the other hand, read up on some photography and downloaded a new software onto my computer that my sisters in laws purchased me. Eventually this evening I did start helping with the cake though as time was pushing on and I didnt want my other half stressing. I wanted to leave the majority to her though, as shes amazing at these sorts of thinfs and its only fairvas im doing my part on the actual day by creating the memories through photography. As I mentioned, we started the cake at lunch time which was roughly around one ish, and we finished all of half and our ago which was roughly 2230. Ill try and get a picture of the cake to upload for you all to esee over the next few days. Suspiciously, (dont want to build my hopes up) but today and yesterday I have been feeling so hugry and wanting to eat everything insight. Im just craving food soooo much. Im not sure if this is a sign of a positive note, or just because ive had my steroids up again. Lets just say im hoping its not the second thought. Complete change of subject now, but, I never understand why I put my body through so much. Every day thus week weve been busy with something, and now after tiday ive completly screwef my body up again. Im hoping I havnt screwed it up to beyond movement tomorrow meaning ill end up letting my friends down. This and fir next week when me and my other half are having our official first un hotel holiday break with just us...oh and Dixie!! Ive always loved camping and other than camping in the back garden for a tester experience last year, my other half has never done it. I was determind that this year it was finally going to be ticked off my bucket list again as since my illnesses become so bad, ive not been able to go, but this year ive decided to say sod it, I could be dead by the end off the year, I need to start living for today...so thats what im doing. Right, I better go, got a blinking lit to do tomorrow and ive got physio and nebs to do now!! TTFN XXXX

Past & Present

0530 we were up today, and in a way, blinking good job as I was having a full blown allergic reaction. When will my body give me a rest!? Once all the morning duties were done we had to set off for Bridgwater. I have finally emptied my storage unit after having all my possessions locked away for over two years. Admittedly it was really hard, especially as I had my other half with me and she was finally seeing photos of me and my ex. As soon as I found anything from her, I tor it up, smashed it and put it in the bin. I want nothing more to do with her. She has (or shall I say had) ruined a fair chunk of my life and I wasnt going to allow her to continue that. And honestly, it felt good doing it. It felt as though a chapter has finally been closed and I can officially move on with the most amazing lady in my life. After finally getting home at 1400 we quickly rammed some food down our necks, fussed with the pup and put the rabbits in the run and cracked on with sorting through more of my kit. I finally had to call it quits at 1700 though. My lungs have had enough and I could no longer breath. Thankfully my other half realised how much I was struggling and how much I was coughing with a very high pitched wheeze that she rushed to get my nebs and I sat with them for a little while. Sadly though I am still very twitchy. Im praying that itll shift as next Saturday im meant to be doing the photography for our friends sons naming ceremony and I really dont want to let any if them down. Well for now, Im shattered, bruised and irritated so im going to nod off TTFN XXXX

Lots As Usual!!

Time has literally flew by over the last 24 hours and ive really enjoyed it, even if it has killed my muscles. Yesterday, we had to clean out our three rabbits. With me being stuck in bed all week they havnt been cleaned out and had got very poopified. My other half cant do it on her own as shes not 100% with handling them yet where as ive had the one rabbit 5 years now so very much use to them. Other than that really, we just walked the pup around a pond whilst my other half had an appointment and then also walked her around the field a few hours later. After that, weve literally chilled all afternoon/evening and it was great. Today has pretty much been the same. Weve put all the rabbits in the run all day and we took the pup to the field. This time though with walking the pup, because as of today she can now go in fresh water, we took her in the stream at the bottom of the field and she was in her eliment. We didnt think she would go in very well, and initially our thoughts were correct (due to her falling in the pond at 7 weeks old) so my other half with her bright orange wellies, jumped in the stream and started splashing. Dixie was straight in. She was hilarious. She was copying my other half by splashing with her two front paws but then also trying to eat the water that was flying in the air. After this she started digging in the soft mud under the water and then was doing circuit's around us both, in the water, back to the field then back to the water. I really wish I had recorded it as we were in fits of laughter. She also learnt a new trick which was fetch and bring back. Were so proud of her as shes learnt so much for just 14 weeks old. Whilst out walking I saw a perfect composition in my head for a photo to enter into a competition so when we got Dixie home, we grabbed my camera, went back to the field and captured it. That photo has been submitted as of tonight so ill get the results in 3 weeks so fingures crossed. I also booked another mini break for myself and the other half for May time. Its another camping trip in Devon. It was a voucher on group on so I couldnt resist really. Got a fair few mini breaks coming up whichll give us something to look forward to. We also had our amazeballs moses basket/ rocker arrive today. It wasnt meant to get here untill next week so we were beaming when it arrived today. Its come all the way from America as they dont sell them in this country. Although we dont have a baby as of yet, I couldnt stop myself from buying it. We just have to store the thing now ha. TTFN XXXX

Wish Things Would Change!!

A year and a half ago, or there abouts, I had decided enough was enough with my asthma and treatment that I got refered to a specialist in Birmingham who for everyone else had done wonders for. I built my hopes up and kept thinking of how perfect my life is going to be once he sorts my lungs out. Yes granted he diagnosed me with brittle asthma, proved I didnt have VCD and also found I had severe reflux to the point if needing surgeryc to which he then arranged. This is all fantastic. For last Wednesdays appointment, we had been having email discussions for potentially future treatment, so I couldnt wait... I had four appointments booked for that whole day, the first being with the psycologist. She was absolutly lovely, diagnosed me with having PTSD and said that I need to be seen weekly for having specific treatment, so geres bomb shell number one: because I live in Cornwall she didnt think it was appropriate that I drove to Birmingham weekly to have this treatment so shes writing to my local team to see if they will help, and I have to pray like mad that I get on as well with the next team. Following this I was meant to have a reversability test, this never happened as the technician was flapping about the time and that she was running late. Er yeah, not my fauly lovey!! After this I was then to see my consultant, admittedly I was excited at the prospect of having new treatment and the possibility my life could change...I couldnt have been more wrong, and here's where my second bomb shell of the week hit. I have been told that my lungs are to damaged and that I am too poorly and uncontrolled for them to do any more for me. Because of what I just mentioned, I am not allowed onto any clinical trial because it would put my life at risk and potentially kill me so I have to stay on all my current medication and pray that in the very near future, a wonder drug gets invented and becomes perfect for me. Untill then, my consultant has said that I will now slowly deteriorate both lungs and muscles wise. Im devestated!! My last appointment was physio, and y this point I just wanted to leave, I couldnt be bothered now, I want my bed, I wanted to cry, and most of all I wanted to be left alone. Following all this, we also had planned that two days later myself and my partner were going to a clinic. In Cardiff to start a family...and heres where the final bombshell hit us. They would not help us gain this dream because im on long term steroids and they would also worry about the pressure on my lungs carrying a child, and they wont let my partner carry a child because her BMI is slightly to high. It sucks, if we werent a same sex couple we could naturally have our own child, no matter what tablets I was in nor what any of our weight was like. I find it unfair that anyone can deny you of a child for these reasons. We have come back home now and we are back with our very scatty Dixie, but my head is still very much depressed and my flash backs have rocketted. I hope things sort out soon. Its just bollocks that for the 10th year in a row, my birthday has yet again been ruined!! TTFN XXXX