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.

Monday, 14 March 2011

Something Needs to be Done...

Everything has reached a point now where things just have to change, and pretty much rapidly. I cannot be allowed to get more unwell and continuing regiments of treatments that are not working as well as they could be and I seem to be getting back to where things were previously where I was getting admitted to hospital on a more regular basis. The problem we seem to be facing is what can we do? How can we fix all of this?

A few doctors have wondered whether a Sub-Cut trial of Turbuteline would be beneficial here, and I am open to anything right now. Even if that does mean that I will have to have a needle inserted in to me on a regular basis. If it means I can have my life back and be able to go back to work, and live a normal life, I can go with that. I think right now with my health the way it is, it is shocking that I had just been left to get to this state and the doctors never knew what they could do. It is a rather frustrating thing really.

As for the housing thing, well we have submitted an appeal to Housing Benefit for the back-date we should have received back at the end of 2009. We are getting as much together as we can to get that sorted out as soon as possible as we need to get out of this accommodation. It isn't appropriate for purpose and the noise problem is really getting out of hand. We ended up calling the Police on Saturday as the noise was so loud and the vibrations were so bad that I wasn't even able to lie down without being in pain. So I was left feeling pretty miserable.

I feel a bit better than I have recently. Emotionally, I have just left a lot of this to slide off my back and pretend it hadn't bothered me. But there are days when I have to admit, it does bother me. I do feel pretty useless about the whole thing and yes it does upset me when I am reminded of my limitations or the large amounts of medication I have to take on a day to day basis, dedicating a great deal of my day to making sure that I am able to breathe and stay out of hospital. It definitely was never a life for a 23 year old woman, but I know there is way worse out there. I think sometimes when you don't feel so well, it is natural to feel pretty low in yourself, but I think the important thing is to try and stay positive, rather than get upset.

On a lighter note, I had a piece of mine published by Evergreen Nebulisers. A company whose service is dedicated to helping those who need specialised therapy to those who need it.

Evergreen Nebulisers Blog

Loves
Wendy xx

6 comments:

  1. Im in that sitaution going in every month... realt quite poorly always being given at least magnesium and saying in few days.... at least not overnight!

    ReplyDelete
  2. Are you under a consultant at your hospital, or a tertiary centre? Subcut generally isn't considered unless your at the end of a line under a specialist centre

    x

    ReplyDelete
  3. Am under Dr Mansur at SBAU in Birmingham, we have tried all kinds of different treatments, and we clarified that it definately was asthma, we just need to stop the weekly admissions,

    Hope your both ok :)

    ReplyDelete
  4. If your under a consultant they should be seeing you waaaay more! If i have any problems i never go and see my GP it's straight to my consultant. Maybe you could try the same, as they can do so much more. I'm guessing by your blogs that your rarely admitted to a ward??

    Hope your feeling a bit better
    xx

    ReplyDelete
  5. I get admitted to the ward quite often, but most of the time, I get to go home (usually because I beg as I hate MAU its so noisy!!) Am still feeling a bit pants unfortunately, but will try seeing Dr M more often.

    xx

    ReplyDelete
  6. I'm was under Dr M and found them unhelpful when your not in there area ie not able to be admitted there. I was meant to be seeing them monthly but due to distance and how busy they are more likely 3 mouths. Local consultants I find dont want to change anything or touch on consultants toes so its patch you up send you out!

    ReplyDelete

Thanks for your comment. I will review it as soon as possible!

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