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

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

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

About Time It Got Better Dont You Think!?

For me it is more gutting news. Ok so I slightly already new it in the back of my mind or maybe thought it could be that but now it is official. The doctors have diagnosed me and are treating me...I have Steroid Myopathy and I hate the fact it is now reality. For those of you who dont know, Steroid Myopathy is a muscle wasting disease caused by steroids. I have to try everything in my power to keep what little muscle strength I have else i will be wheel chair bound. I am considering a wheel chair now but still debating it as my legs technically still work and im sure if I were to use a wheel chair perminatly what muscle I currently have will be gone for good, and thats the last thing I want. I also have to start a new drug which is similar to steroids but it has no side effects like the steroids. Sadly though this doesnt mean that I never need to take steroids again, every asthma flare up I have, I have to have a big dose again yo get me through. Perfect.

Also as mentiobed before I have been having problems with my hip, well today I had an injection in it in the hope itll sort it out. I have to give it 2 weeks to see if it has made a difference. If not I am being refered to orthopeadics.

Is life ever going to get better, or am I going to have to suffer more and more with these shitty side effects.

I guess on a positive note, I can officially marry my amazing girlfriend who has been my rock these last few weeks. Love you so much!!

TTFN

XXXX