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.

Friday, 7 March 2014

Chugging Along

This is the first time I have ever blogged from the hospital, a few days in from having a bad one. I am doing better and am down to 2l of oxygen finally. Maybe by tomorrow we can say that I am off it altogether! Every step forward is a step closer to beating this thing and getting home.

I have always been a firm believer of giving credit where credit is due. If someone does something exceptional for you then it is only good manners to say thank you. In this case, the person I want to thank is the brilliant paramedic I had on Monday. Not just because of the medical side of things, but how he managed to make a personal rapport with me and made me feel less like a number and more like someone he truly cared for. I have had a mixed bag of paramedics, some have been wonderful and so kind, others have been rude or complacent and made me feel anything but at ease.

This event however was the most different attack I have ever had. I was going through the usual motions that I tend to go through before I have a big one. Usually it starts with behavioral changes, only subtle things that those closest to me can notice, like barely being interested in anything, wanting to do little more than sleep and being off my food. Usually it kind of comes, hits, gets treated and away we go with it and then I have a few days feeling delicate before springing right back again. The decline on this one took much longer than expected and it wasn't helped that my own emotions were playing more of a part then really they should have.

One of my main reasons for holding off so long was that I was painfully aware of the last few times I was admitted, how traumating that was because the staff ignored what I was saying and then ignored my GP's instructions regarding my "regular medication" regime, waiting around in pain for hours on end and no one looking to help relieve this until Natt made enough of a scene that we couldn't be ignored. Last time, I was so exasperated and frustrated that I just wanted to walk out! I tried that again last night, this time because I just couldn't handle it anymore, but a very kind nurse found me halfway down the corridor, helped me back to bed, helped me calm my chest and sat with me and helped me through it. When I did finally manage to go to sleep, I think I put my music on and slept right through the night until morning.

But I digress, I was feeling rough and kind of grumpy most of Monday afternoon. No other reason than I was tired, I was in pain and my chest felt as though someone had dropped a boulder on it. I was nebbing at home but not getting very far after each one. I did instigate a little bit of an argument with Natt because I was in a foul mood and just needed something to outlet it on, don't get me wrong when he arrived at the hospital with his smile and kind, soft voice I broke down and apologised to him and he wiped away my tears and he told me that he knew I didn't mean it and that I have just been so frustrated recently. He stayed with me through resus and once I was settled and ITU stood down (they had been preparing to tube me if I hadn't gotten much better) he cane with me to the ward, staying until I finally fell asleep at 2AM.

However between home and the hospital, I am really struggling to piece together what happened. I remember sitting on my bed and doing a peak flow which was about 170l/min, thinking to myself to try again and if it was still under 200, call it as nothing I was doing was helping and by this point, I was barely able to say a word in one breath. I had to get my neighbour to direct the paramedic to the flat where I had just about managed to perch on the end of the bed, I knew at that point, I wasn't going to be going home from this one. The paramedic assessed the situation quickly and started nebulisers and oxygen right away. As soon as we realised that wasn't going to work, the paramedic started bringing out one of the big ones. IM Adrenaline. As well as cannulation and IV Hydrocort (I ended up having 3x100mg Hydrocort that night!) and as he couldn't get a truck for back-up, we had to speed in the car. One thing I did think was going down the Alvechurch Highway at 120mph with blue lights and sirens blaring was actually kind of fun (probably because of the adrenaline!) When I finally came around to what was going on around me, I was confused and the first thing I turned around to the nurse and said was "Where are my clothes?!"

I've been on Ward 2 now for a few days. Its been a rocky recovery so far and I have had some episodes where my chest just hasn't wanted to play properly. The underlying problem I have is an LRTI which has basically been on and off for over a year, it caused some abcesses which seem to have started to calm down and the rest of my respiratory tract is still on its way to getting better. It may need more antibiotics and even when I get out of hospital (maybe tomorrow?) I am probably going to be recovering for a little while yet. Recovery from asthma isn't easy at the best of times, its actually harder when you have a lot of other issues to deal with all at once. I know now that I really did try and leave things FAR too late and it has actually hit home with me again, just like last year when I almost died from my asthma.

It's those times it gets too close for comfort that make us realise how lucky we are. Nothing is trivial and should ever be taken for granted because you never know when something will come and knock you sideways. This isn't something that has happened often but there have been more instances, particularly in the last year, where things are not just coming to a head, they tend to mushroom cloud and the parameters to catch it at JUST the right time are getting harder to see. One change from one moment to the next can be either catastrophic or the reason I came through it in the end.I really do need to stop trying to push myself as hard as I used to. I'm not 19 years old any more and unfortunately due to reasons I can't really change, I now have very poor lung function for someone my age. I need to acknowledge that and take that in to account sometimes because it is the main reason I am struggling so much. I want to live as normal a life as possible but I can't so Ii do what I have to. I make do.

I'm not sure exactly how much longer they want to keep me here and we are trying some new meds and possibly other things to try and sort of "bridge the gap" to help me get my life back on some kind of track again. Well. For now. We'll see what happens.

Wendy xx

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