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, 26 March 2015

Medical Limbo

I was reading an article recently (you can see it here), about the reasons people go to visit their GP and some of the more ridiculous reasons people go to the doctors. Some of them are just shocking and the unnecessary waste of resources and GP appointments to a system that is already heaving under the demand, especially with an ageing population, people living longer than they did 20-30 years ago and the health demands that throws up, and it means that sometimes, the people who really need an appointment end up either waiting for weeks or getting so sick (or sometimes so fed up) that they just attend A+E. Some of them are then kept in hospital for prolonged treatment which may not have even been needed had they accessed the appropriate care at the appropriate time.

At my GP surgery, a routine appointment can take up to 2 weeks to get. I'm lucky that I am under a "priority" scheme which means that if I call up the surgery and explain who I am and what I need to discuss, they will try and see me sooner than if I was anyone else. This idea of a priority scheme is a good one I believe because it means that people, like me, who have severe chronic illnesses which can (and often do) get worse very rapidly, can access the care they need quickly and intervene before things get too serious. The problem with me is that I have a habit of getting used to a certain level of "crap" that I sometimes forget that what I am experiencing isn't "normal" circumstances and it isn't a regular way to be.

I keep trying to think of why I do this to myself now. Before, there were reasons I think I never really got past them. I haven't been in that situation and the memories should be allowed now to fade. I won't get punished for seeking help. I am worthy of help. I need to stop convincing myself that I'm some kind of hypochondriac. Whenever I go to the doctors I always have a genuine problem and they always give me something to try and help that. I do think that sometimes the GP wants to hit me with a giant mallet with the word "NO!" on it whenever I start doubting myself. I spend most of my days and nights managing the routine of medications, monitoring, physio and other things, on TOP of having a life, doing "normal" things like going out and doing stuff. You know, fun stuff.

I had a lung function test done. It's interesting because before no one was sure what was happening to me and there had been times whether it was contested as to whether or not I was asthmatic (this was years ago mind, I think it was that degree of "hey, maybe it's not..." that fuelled a lot of my more reckless behaviour about the whole thing) and I think now it has hit home. It has kind of given me a mental bitch-slap to not take risks with no reason. I knew my lungs were struggling and I knew my function wasn't going to be upwards of 60% which it was less than 5 years ago (even more staggering that 10 years ago I was near 80% function) and now I have about 46% of my lungs functioning, off oxygen I can't keep decent saturations anymore and there are days when I am confined in a body which is slowly failing. My lungs are slowly failing and I am dying as a result. I find that hard to admit and take in to account. It scares me and I hate knowing that one day something is going to happen. The uncertainty. The fear. I feel cheated and knowing that there are people out there who made me miserable and it is cruel how they will get to go, live long lives and do everything they can and knowing I may not make it to 30. It doesn't seem fair.

I guess that seeing it all there, in black and white really hit me. Before there was a degree of "it could not be so bad" and possibly some cure on the horizon. I never realised how hard I clung to that. If there was another explanation, maybe there would be more we can do. But to be told that in no uncertain terms that there is no getting better now, all we can do is try and make it easier but there will never be a day when I don't need to take meds or be on oxygen. This is lung failure and until it gets too bad, all we can do is make the best I get (which isn't actually good at all) work. It is the hardest thing to return from an admission and only be ever so slightly less unwell and knowing that really there is little point on going at all because we have the barriers we have. Its surprising that as soon as I could, I let myself finally fall apart. Natt had to hold my limbs so I wouldn't harm myself because I felt so upset, angry and wanted to make a person suffer, but would that fix my suffering? No.

I don't know what is going to happen. I am on maximum therapy for my condition (step 6 ) and  there isn't really too much "wriggle room" as I am on everything they give. Well, I will see the expert again soon but it makes me worry because I don't actually know whether anyone can do much more for me. We'll have to wait, hope and see where we are when they get there. As for now, I'm in limbo, waiting to know what they can do, if anything.

I'll be alright, I'm just feeling a crash, right?

Wendy xx

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