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.

Saturday, 5 February 2011

Living with My Condition...

I have mentioned a lot of the times where I have felt frustrated when it comes to Type 1 Brittle Asthma and the constraints that that has on my life and what I can do. However, as is my way of coping, I have a habit of trying to make light of everything. It was what my mother always used to do, gloss over the reality with a veneer that chances are was so obvious or cracked that it was pointless anyway.

So, here is a reflection of what life is really like for me. I understand that it may seem a bit far-fetched, but it is something that I live every single day from when I wake up till I pass out from exhaustion every night.

My day often begins between 8 or 10. It really depends on what sort of night I had, whether my asthma woke me up, or whether I could sleep for nightmares and other nasties. I usually prefer to wake up in my own time, that way I know I will have gotten the rest I need and I am less inclined to be grumpy or stroppy, than if I was woken by an alarm or another person's inconsiderateness. I usually have a cup of tea waiting for me, or if Steve is out, I slowly go and make a cup of tea. Before I do anything, I check my Peak Flow, a method of monitoring my lungs.

Usually for someone of my age (23) and height (5 foot 6), a peak flow measurement on an EU standard meter should be around 435 L/min (peak flow is measured in Litres per Minute). Anything under 85% would be suggestive of asthma. For me that would have been the 370 L/min mark. My peak flow on a good day has been around 250 L/min and I have been on 40mg of Prednisolone when this score was obtained. Just lately, anything over 200 L/min has been the best I have been able to do, and after the last few weeks that in itself is a bit of a downer, but that's how things are at times.

When I get back with my tea, I usually have to have my first neb. I get very tired on such a short walk, I will admit this can be very frustrating, but then I will sit, neb and feel much better within a few minutes. I will usually measure my Peak Flow before and after this, partly to make sure I am using it appropriately, and partly to make sure it worked. By the time the neb is finished, I am ready to take my usual morning medication, including any extra Prednisolone and Co-Codamol as needed.

After all my morning medications, I will set about pottering and tidying up, again of course taking it as easy as possible. My general rule of thumb is: if it makes me breathless, only do as much as needed to make sure the place keeps tidy. If I can, I do like to get the vacuuming done, kitchen cleaned and then maybe even the kitchen floor wiped. Depending on how I feel this can take a long time and I will be nebbing frequently.

After Lunch, (which is usually a light affair of soup or sandwich) I sometimes like to have a rest with a film or 2, a pot of tea and maybe a well deserved snuggle in the duvet. I usually fall asleep if my asthma has been kicking me about, and will nap for as long as I need to, of course keeping on top of any wheezing, pain or anything else. Sometimes it is as important to be comfortable than running myself in to the ground.

As there is no such thing as a typical afternoon/evening, I try and do as much as I can, seeing friends, doing drawing/writing work and organising household things like bills, budgets and even diet. I spend time with my animals and give them so much love and affection. Since losing Alphonse, I was very distant with everyone, I was grieving in a way I never had before. I had fought for so long to try and save him, and it was that moment where I signed the Euthanasia form for him, that I really realised just how far away from the 10 year old who held Sniffy as she died I really was. It was the most surreal thing in the world.

But we are getting off subject, after Dinner at around 5, I am preparing for an evening of chilling out, although often this is changed by my chest doing what it does and having to take a ride in an ambulance to the hospital. Then its a case of the whole will I/won't I for staying in hospital overnight or for a longer stay. This used to be a weekly thing, sometimes up to 3 times a week, and everytime I went they would be thankful that I had gone or I would have died, only allowing me out as I would plead to go home. Hospitals are very uncomfortable places.

On returning home, all I would do is sleep. Having asthma attacks is hard work and can feel like running a mile breathing only through a straw, so it can get quite gruelling. Luckily now I have my own neb at home which means that rather than waiting for up to 2 hours while doctors work out what to do, I can have a neb straight away, cutting it down early or even avoiding becoming completely shattered before any treatment.


Wendy xx

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