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.

Wednesday, 10 December 2014

Miracles do happen?

A few nights ago, I slept really well. Which isn't normally the case for me, but I do like to sleep soundly and wake up feeling better as a result, I just don't like being disturbed at an early hour. I don't believe it's right that someone should be allowed to make that kind of noise at that time of the morning, purely because they want to be loud. At half 6 in the morning, it's nI understand different cultures have different ideas of what is acceptable and I support cultural sensitivity as much as the next person, but being woken up early in the morning by someone playing loud music is not right. No one should have to deal with that when they are trying to sleep but since the psycho is gone now (something to do with him turning up at the council armed with a knife) sleep has been possible again and its having a positive impact on my physical and mental health. In fact, my mental health is now clinically stable and we even proved once and for all that my asthma wasn't being caused by it which to me is a heck of a way forward.

I do sleep a lot because of my conditions and the effect they have on my body. Asthma is an exhausting condition and it can be a painful one at that. With the other factors as well (recurrent infections and the inconclusive bronchiectasis) it can make things a lot harder. Because I have lower lung function (at best 40% on a good day) it can sometimes make it a lot harder to do things, one trip to the loo and back for one person is probably 2-3 trips for me. I do however try and be as active as I can be, even if its just a little potter around the bedroom and a quick tidy. I have found that my bedroom tends to be kept very clean because I know that would happen if it wasn't kept clean and as dust-free as possible. It does sound pretty simple but I know how much dust and asthma don't mix. Call it OCD if you want but I spend about an hour a day pottering around my bedroom just tidying up and making sure that the dust is kept to a minimum. I do like a tidy bedroom and well, it helps to be able to find things when you're looking for them. Since picking up on the dusting it has improved my health a little but there is still a long way to go before this is in check. I'm bringing the gunge up bit by bit, but I could really use a break from it all. Maybe I could put my asthma in to a little box, nail it shut and never be affected again. Wishful thinking.

I do try to keep my independence because its important to me. Even if it is just doing little things like going to the shops in my chair or pottering around my bedroom with my oxygen in tow. I believe that being given portable equipment should mean that I'm not confined to one place. I get really bad cabin fever when I'm indoors for more than 2-3 days and I start looking for reasons to go out. I've never really been a "home bird", I don't think a woman should be married to her home (my home is less than perfect but perfection takes away from life) but its remembering that going out takes planning. Before I go out, I have to check that I have anything I could need and I tend not to like going out after my morphine. I take it and it makes me fuzzy, so I will either take it OR be in control of my wheelchair. I don't do both. I'm very careful with my chair and, aside from a few toes, I haven't had any accidents or seriously injured anyone. 

It took time to hone my chair control. I've only had my wheelchair since March but now I can confidently weave the way through town as well as get on and off buses and trains with no problems. The year or so where I used my scooter helped me too because I got the hang of it quickly. I do still have my scooter in storage but tend to use my chair to get around. It means that I can be out and enjoy my life as I see fit. OK so there are days where I am better off NOT going out and keeping myself in that warm safe place of my home. 

I had a bit of a personal blow at the doctors yesterday. Basically we are almost exhausting all avenues of oral antibiotics. Its been over a year and I've been no closer to recovery, except after 5 days of Meropenam and Tazocin (had we backed that up afterwards like they're supposed to) where we nearly got it. I'm actually exhausted from having to fight it off and getting nowhere fast. We're trying one more week of orals but if that doesn't shift it by Monday at the latest then I am going to be stuck in Redditch for Christmas on home IV drips or I could be stuck in hospital, either way, I may not be able to travel which is a crushing blow for me and Jace but I wouldn't be able to take a gamble if this was the case. It wouldn't be fair or right. But we'll cross that bridge if/when we come to it.  Who knows, maybe I'll get some kind of miracle. I just have to believe that it'll be alright.

Wendy xx

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