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, 16 January 2015

Keep Your Chin Up!

I'm still getting over my admission (and this chest infection which seems to not like the idea of subsiding) and getting back to the norm. Well what's normal for me anyway. I'm still struggling with pain and my asthma but this isn't anything particularly new so I am just doing the usual stuff, taking the right meds and of course making sure that bed rest is also taken. I know it sounds obvious but its the way my body will heal from everything and I want to give myself the best chance possible to recover and maybe even improve long term.

I don't think that I have ever slept this much in my life! The morphine makes me sleepy so really its not my fault that I have slept for as long as I have recently. Admittedly the last week has been the week of what I call the 5AM cough. Between 5-7 every morning (maybe because at 6, they did first obs) I wake up and I have a huge cough, shift goo and then take some pain meds and go back to sleep. Its odd but I often feel better after a cough and a chance to clear my airways, I get a lot of rubbish built up (and lately it has tended to be bright green and flecked with blood) and it does feel better to clear it. I will probably always have some degree of chest infection but its firefighting the symptoms as they happen. And that is no easy task.

I do like to keep myself occupied though. Usually it's a craft activity that I can lose my days to. In 2013, I tackled something that I never was able to, I learned to knit. I always wanted to learn, so when Becky encouraged me to do it, I felt really happy. I'm making a scarf with sumptuous, chunky wool which when its finished, will be warm and cozy. I think we can live with warm and cozy, right? There are many other things I enjoy doing, don't get me wrong. Sometimes I like to sew or game and often, I love playing with my pets.

To anyone who asks me, I am not allergic to rabbit or guinea pig fur. My pets actually enrich my life and there's something about how they make me feel loved that when I feel hopeless, they help. Sometimes I do feel like there's no silver lining, I'm only human after all. And there are days when I just feel alone, scared or just have trouble processing everything. Its natural. How could I not? I know people think I'm strong or stoic, but really, I am just making head or tail of my situation. I'm not a superhero and I do have a weakness and funnily enough, I have bad days.

I had a review with my social worker today, as usual she seemed more interested in cutting services. Until I told her exactly what I would usually have kept bitten back. I opened up and was honest. I said I have good days, when I can do things and enjoy myself with the right assistance. I said I have bad days where even walking from my bed to the loo wears me out. Those days are days I can't get out of bed, I sleep most of the day between meds and try to keep myself as comfortable as possible. Its been easier since my meds were altered though. Instead of tramadol, I now have long acting morphine capsules instead. The only thing I don't really like is that sometimes I feel drowsy, especially if I need short acting oramorph between doses. I still have co-codamol but I do make a habit of taking a break from it, I don't get any problems with doing so meaning I have no worries about addiction.

Its going to sound odd, but I don't want to become dependent on things. I'm stronger than that and who knows? Maybe one day they'll be able to cure me completely and I wouldn't need any meds, ever. That would be the dream come true, not having to take pills, nebulisers, inhalers or liquid meds, but until then, I'll keep going and keep my chin up!

Loves
Wendy xx

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