My Life In A Nutshell

MONDAY 2ND JULY 2012.

Dont worry, im not expecting you to know why this date is of any significant value to anyone as it doesnt have one. This date though is the last time i blogged about my medication. The treatment that keeps me going. In 2012 i was with consultants that really wanted to start from scratch. Reduce nearly all my meds and find out the best ones from me. That didnt happen. Instead, they started adding more in.

Today things are worse than before.

During a 24 hour period i take on average 64 tablets a day, 16 nebulisers minimum. A salbutamol inhaler. A nasal spray. A tablet inhaler twice a day. A TENS machine, morphine patch. Supplements and im also now on sub cut IgG infusions of 60mls a week.

I wish my life was counting other things instead of drugs, oxygen reading, pulse reading and peak flow reading.

I guess being in the UK i am extremely lucky, my medications get funded by the NHS and the government. I really feel for those in other countries that have to pay for their treatments and its in the thousands. If their insurance wont cover it, how does the government expect them to get the vital medication they need!?

I know one things for sure, if i didnt have this list of medications, i would be dead. If any asthmatic didnt have one single inhaler, they would be dead.

Asthma needs to be more recognised. I have been doing this blog now for near on 2 years and in those 2 years. Ive literallt have my blog viewed thousands of time. I just pray that just 10 of those thousands of people have gained a little more knowledge into the life of an asthmatic. That they can see its not just a few puffs of a blue inhaler. Its time consuming, mind and bodily draining, its demanding and most of all its life threatening.

Asthma needs a cure, can you help find it!?

_____

On a different note, depression, this also is very life threatening and not enough people know about it. This week, Tuesday infact is my wifes 21st birthday and suffers from severe depression. With our housing situation this has meant that things have been getting worse again. I didnt know what to do, how to help her so,i gave her an early birthday present that she can focus on, and give a purpose of living for. I got her a guinea pig. We still dont have a name for her but she is 9 weeks old and such a character. Today is her first day with us and in ta time, she has climbed the curtain 3 times and climbed up the inside of my trouser leg twice. Shes blinking fast thats for sure

Well, i better be off, i have those drugs to go take so i can make it through the night as i am currently suffering yet another chest infection.

TTFN
XXXX

Here is a visual look into my medications and below is our latest family member, the nameless guinespig class="separator" style="clear: both; text-align: center;">

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

The Future Is Bright...The Future Is Painful

Ever considered what asrhma could be like...actually, ill better that, ever imagine what an asthma attack could feel like. So say that answer that, putva peg on your nose, put a straw in your mouth and breathe. Take it a step furtherx run up the stairs. You feeling daring, run 1500 meters. I bet you get stuck with trying to walk up the stairs let alone anything else. For me, this is pretty much how I feel on a daily basis. I stryghle to breathe with no break. To be honest, I cant actually remember what it is like to breathe "normally" so to speak. One thing that really winds me up is that many people assume that life with asthma is a few pumps of a blue inhaler and life goes on. Unfortunatly, for many there is more to that than this. For me, life with severe brittle asthma has been life changing, you could never live my life if your not use to it, believe me, its taken me four years as it is and im still not there. In America, they actually make their citizens aware of what its like to have asthma. They teach people so that there are no assumptions. This in tern im sure leads to better control and treatment. I wouldnt know for sure as insurance for me to fly out of this country is £6000. Yes you have read that right. Its this high because of all my medication, because I cant walk very far at all and also because in the last 4 years ive been to intensive care 11 times. Heres a video I found on youtube to show that America really do show you things in true light (*WARNING, IT IS EXTREME SO PLEASE ONLY WATCH IF YOU ARE PREPARED*) https://www.youtube.com/watch?v=KtiATXtIjlk Ok so now that ive had my rant about asthma because im pissed off with the way ive been treated and told that I "just" have asthma etc etc etc...I had to get it out my system as its not "just" asthma its my friggin life, and its ruining it. On the note of ruining my life, im fed up with being in pain and im fed up with this muscle weakness. I literally xant take any more pain releif and well as for my muscles, theres absolutly nothing can be done. Life shouldnt have to be like this. I should be able to live daily being carefree like everyone else. Being able to walk out the door and just worry about whether I have my purse. Keys and phone instead of this and, nebiser machine, spare nebules, epi pens, steroids, antihistamines, crutches, wheelchair, pain releif, and much more. If I wasnt so scared and had the chance to, I would end things right now. Life isnt happy when your living thiis life. Its unreliable. Unpredictable and uninspiring!! I hate it... TTFN XXXX