For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Thursday, 21 August 2014


I have had some really surreal experiences in my life. Some were more self inflicted where as others have come about due to being in hospital with a lot of older ladies. The problem with it is that a lot of these older ladies are confused through no fault and they can't understand that there is other things around them and sometimes you do get attention seekers (there is always one wherever I end up, they wait for the nurses to come in and suddenly they start screaming and shouting like they're near murder!) and it says a lot when the all the nursing staff comes in at 4 in the morning because she started making such a noise that she woke the entire ward up just to tell her to shut up and stop being a pain. She wants to be centre of attention and basically if she doesn't get it, she rips drips out and causes problems and actually worsened her own condition just so she could stay there longer.

Basically the consultant has ignored everything that is contrary to his thoughts on my asthma, the most annoying was the clear desaturation I had when on air and the oxygen being reinstated by the nurse (saying I reinstated it when I didn't, I am not that stupid to turn the oxygen back on when it was switched off at the wall, that's for the nurses to do) I actually resisted when the nurse tried hooking me up to the nasals). I think it wasn't the content of the lie (it could have said "Has been growing a set of antlers" or some other rubbish and it would have aggravated me) but the whole practice that seems to have come about where lying to cover their tracks is the order of the day. I have taken photos of my records and I have that ready for when the time comes. It was funny when the respiratory nurse and some of the other doctors read my letter and said that it was all a pile of rubbish as the nursing notes clearly said the opposite. Heck the results of the previous breathing tests he was looking back at were in 2005! That's nearly 10 years ago and I was in a completely different place with it, I hadn't had any life threatening attacks or pneumonias.

Shes come up with a plan to do another full oxygen assessment with me, to prove her point that I should be on a little more and to give that one doctor the ultimate in "so there" as well as the other doctors who agreed that there is a COPD element to my asthma, probably due to repeated infection and these being poorly managed, and my asthma is anything but mild and manageable. Well, it'll all come out in the end, as for now, I will save on my indignation until the time comes when I can vent it properly and have something done about it because when it comes down to it, I am the one who has to live with it for the rest of my life. As for my supposed "not engaging" with their plans, I did engage, heck I made myself worse by doing so! I tried the new inhalers and had no benefit and I tried the new plans, heck I even allowed them to cut my antihistamines to just one (and now have the drippest eyes and nose I have had in a while). Luckily I have others on my side on this so I don't have to accept it. I asked for a second opinion. I got it. I then asked for another doctor as a tiebreaker. I dread to think what this more "detailed" letter is going to contain but I have my ammo ready just in case. The funniest thing was when the other doctor looked through my notes and then my discharge letter, saying it looked like it was from 2 completely different patients!

I think I am just happy to be home right now. Back in my own bed with familiar surroundings and away from being kept up all night by noisy patients (I can't get over the one patient, she was really funny, she pointed to the attention seeker and said "I can't deal with this irritation" which set me giggling and then the whole shout of "I have a itch up my bum!"and then her thinking I was the nurse, thats when it got weird! I won't go in to the scarring details but it would have been funny if it hadn't really happened.) The only thing I have to worry about is that I am now in the recovery stage of the attack, it takes time for me to get my energy and strength back after attacks. I don't leave the hospital well. I just leave less sick.

Having my meds bounced around so much just days after a serious attack is one thing, the fact that the attack was completely ignored by the consultant at the time. It says something when you check your peak flow (which they weren't monitoring on the ward, what the hell?!) and it's only just higher than what it was when you were first admitted and they had been considering ITU. Kind of raises some serious questions doesn't it? I am glad I got another opinion before I left, on top of the previous opinions of Dr Lal and Dr Brocklebank (they confirmed the bronchiectasis and the other doctor, who I have seen in clinic was the deal breaker) otherwise I would have been left up the creek with a mouth like sandpaper (common thing with Spiriva) and barely able to move at all without cranking my oxygen up. And this is what they thought was best for me?! I am going to get a call from the GP tomorrow and get their view as well as re-referred to the SBAU. As for now, I am re-adapting to Atrovent, I think I took for granted how much that stuff has helped me over the years and I will never be unfaithful to ipratropium again!!

I guess I have to think positive about things, they know a bit more as to why I have been so crappy and we finally know what those shadows on my X-Rays were.

Wendy xx

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