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.

Tuesday, 24 March 2015


Well, I'm back in hospital again. I am going to admit to you all (as well as publicly apologise to the sensible ones who would have had me here sooner) that I probably left it too long. Fear of a place broke through my normal, logical thinking. It was great over Christmas but I was still rattled by past experiences on medical wards, over Christmas I was in the surgical ward as it was the only place they had. I don't think that anyone would choose to be in hospital and I should definitely not choose to not go when I need to. Even if I feel scared or not safe.

So yeah, I'm sorry for worrying everyone.

I need to re-learn it. I need to learn when to intervene and what isn't normal. Or how far I can go before needing help. Maybe part of me forgets that even though I have the thins I need to manage, it isn't always going to be possible to fix at home. Does it scare me? Yes. I don't want to get to that point where I spend most of my day and night in a place where I really don't feel safe, comfortable or relaxed. I don't know why. I just feel like I can't let my guard down here and I end up trying to justify my staying out and hiding away so now one has to see how I'm feeling. Something I have always done. I need to work it out and maybe find out how to cope. I seem more settled tonight, everything is set up and ready with meds. Had a new IV put in because my one went pop and now pondering whether to watch a film or go to sleep, my IV has finished so I can't lie and watch it. I did watch a film but seeing as I only have what is on my hard drive now or Netflix so its a little limited. I mean there is plenty to watch, just not my usual massive stash of DVDs, Blu-Rays or on both hard drives. I think choice spoiled me! I kid obviously, I have enough to keep me occupied and not pulling my hair out from boredom, I have been in that situation before, nothing to do and couldn't sleep!

Its not been too bad as yet. No one has had any stupid ideas when it comes to my meds, there was a mix up at first but we sorted that quickly and the slight issue with my IV but that hasn't happened again.Things seem pretty balanced out for now and it looks like I may be here for a few days yet. I don't like the idea (who would?), but if it gave me the chance to get better then I have to just relax and let it happen around me. I think we need more in place for long term, as I seem to have "flares" of the infection regularly and if we could manage it better then I would do that. It's not that I have any personal issue here, its just that I would rather be at home with my own surroundings and relax than take up a bed here. The nurses seem to like me though because I do most of my stuff myself (apart from meds) and I don't constantly call them away from their work. I have been on wards where drug rounds for 6 have taken 2 hours because of patients spitting meds out, violent outbursts and a nurse being called away by someone who wants to be waited on hand and foot.

I think some people forget that a hospital isn't a hotel, care home or spa.  A lot of patients whose families are selfish enough to not want to allow them at home are left in a place where they have vulnerability to infection and subsequently end up dying in hospital with their dignity stripped away. The ones who want to be pampered should remember that they are in a ward with others and that they can't be pampered just because they want that. I do think though, there should be a place for younger people in the hospital as for someone who is young, it is a daunting, lonely place. I don't mind older people, the wealth of their life experience is amazing, but its hard for someone my age to feel less frightened or isolated. I'm always the youngest person in the ward which is weird because if I didn't have my phone or laptop, I think I would climb the walls by now.

I want to go home but the team are trying to work out what the long term plan is here. The problem is, we need to know what to do to keep this from happening over and over again, I'll finish my antibiotics tomorrow but I'm not really much better... seems like a load of stress over nothing really. I feel like we're putting a sticky plaster over a broken leg sometimes and the affect on my quality of life is shocking. It really is. The reality of my condition is that on my good days, I can walk around and do things carrying my oxygen around and then on the bad days, I feel like someone has beaten me all over my chest. Knowing there is a large possibility that the main issue is my asthma is as it is. Its hard to constantly manage my asthma because it is so varied between days. Some days I can be alright and doing what I have to. Others I will be out of it and sleepy. No one seems to know why this happens and what to do about it. I confess, its not exactly what I wanted for my life, but there is no use crying over spilled milk, it'll probably never be perfectly better. It sucks but I am ging to try and remain as positive as possible because if I do keep my chin up,maybe one day things will get better and maybe one day I can walk more than a short distance, but I suppose it is all about perspective isn't it?

I think my biggest worry is for the long term. What is the long term prognosis and is my future really going to be completely uncertain? Will I always be this way or will they manage to fix it or make this settle down? There really are no ways of finding out just what the long term effect of all this is going to have and I guess the uncertainty is what scares me the most. That and my fear that I will never be out of this place! I think I'll just have to take it each day at a time won't I?

Wendy xx

1 comment:

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