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 September 2015

Don't Judge What You Can't Understand.

Getting used to my little fur-babies and finishing up on what has been a huge clear out (I didn't even know I had that much junk lying around but you know how it goes, put it in a box or a drawer and it gets left and forgotten about). I think I pushed myself a little too far and I am paying the price for it as usual. I'm still getting to know this body and what it means for me, the limitations I have to work around and there are always going to be limits. Anyone who could say "Well, it's -ONLY- asthma...." is obviously an ignoramus and doesn't understand exactly what it is like to be in my body. Knowing that I am not on my last legs is great but it doesn't make things any easier to struggle with. Would you tell someone who was missing a limb that "well, it's -ONLY- an amputation" or "it's -ONLY- cancer..." so why would you say the same with asthma? You shouldn't judge what you have no real comprehension of understanding, unless you have been there you have NO right and NO idea.

Please remember ASTHMA CAN AND DOES KILL PEOPLE. I have nearly died from asthma attacks on many occasions and I know how much of a knife edge it can be. People are so ignorant towards asthma because its been stereotyped as the illness that the "geek" kids or fat kids get. Its become a rather big joke actually and when it comes to a serious attack, no one knows what to do. Asthma isn't a joke. It is a real condition and to some of us, it is disabling. It is exhausting. It is painful. So please, next time you decide to make a judgement on someone's conditions, try and remember that it probably feels much different to how it looks. The best way to describe brittle asthma is, how a normal asthmatic feels during an attack is how a brittle asthmatic feels all the time.

The drop in lung function to under 40% has been one of the biggest game changers for me. This has only dropped in the last year or two and on my bad days, I struggle to get over 25%. This means that have on average about 1/3 of working lung and that only works to half its efficiency. So be patient with me if I can't walk too far, I don't choose not to, I just can't. Please try and understand that it takes me nearly 4 times the effort to do something that it would take someone else. Even getting up and getting dressed is exhausting sometimes and I even have days where I have got dressed and wanted to curl up and sleep. I have carers to help me, not because I don't want to do things, but so that things can be done safely and you can ask them, and I am sure they would tell you happily, I do try and do as much as I can every day. It isn't unusual to have them come in to find me flopped over in my bedroom or even on the living room floor because I have pushed myself further than I ought. I am not giving in or just sinking in to lazy habits at all.

Actually its the complete opposite. I am making steps towards making my move to Blackpool. I have a support worker and a housing officer who are working tirelessly to help me get there. It is a long process and it will take time, but every step is a step towards it. I'm getting letters from my doctors to support my reasoning and rationale (because if it was as easy as saying "hey, lets move to Blackpool" then I think a lot of people would do it in a heartbeat). But it does take time. My support worker, an ex nurse, has been chosen specifically to help with all of this and help me wade my way through it. She will be able to call upon her own knowledge and experience to say what my physical needs are and what I will need in a place. What adaptations will be put in and what help and benefits will be needed. Luckily for me, Jace has said he will look after me but we will look to see if any other support is needed as well. Some people think that getting carers in and support staff  means that someone will do everything for you and they eventually behave as such. They then give up and stop doing anything for themselves and are convinced that its because they're elderly or infirm.

That in itself is a bit of a vicious circle. Feel ill, don't do much, still feel ill, do even less, until you're bedbound and can't (or in a lot of cases, won't) even try and do things anymore. I am fighting my ass off to avoid getting to that stage because I don't feel that its a good way to go. Maybe its because I was raised to look after myself, but I can't sit around idle for long otherwise the depression starts and I get more and more frustrated as time goes on. Maybe that feeling has been whats pushed me to go beyond my limits and is now the reason that even as I am typing this, my whole body is hurting. There is blood on my pillows and the top of my duvet (from coughing I think) and I am struggling with my chest today.

It hasn't helped that a certain person drove me from my flat again with their music (this is getting really old now and I am fed up of not being allowed to relax in my own home) and I spent a couple of hours in town which was rammed, not great when you feel like crap and want to be alone to sleep. The good thing is that I have the right people on my side and they have witnessed what the situation really is, things are in the pipelines but I won't let anything slip yet just in case (because last time, he just turned it down while the investigation was being done, kind of obvious when you look at it). I wonder if this person actually understands the level of stress he is putting me under and whether or not he gets some kind of gratification in knowing that he is essentially bullying someone who can't fight back, then again, there are people out there who need to do things like that to feel "big" or "tough" and that in itself is pretty pathetic if you ask me.

As for me right now, I think I am going to watch some more stuff on my laptop, rest as much as I can and do a bit more sewing as long as the elephant stays off my chest of course!

Wendy xx

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