Fighting for Breath

I Have Brittle Asthma. Everyday can be a battle to breath and survive. This is a space to share, rant and come to terms with my everyday challenges and thoughts.

Crisis in Confidence

My latest OU module have started and well tonight trying to get my head around it had a sudden I cant do it moment.

Health Studies just seems really complex with different books covering the same things I really don’t know what I’m meant to be doing and when and not sure what each of the assessment is relevant to which book. Not to mention looking through the past exam papers with fear. I have never been any good with exam think this is poor revision technique but also I have poor note taking skills.

With Human biology is a lack of understanding of what trying to say lots of long words and confusing ways of explaining things. With the OU there is no someone to quickly ask to explain something no guidance as going through and no one to say if got the completely wrong idea.

My dyslexia is coming more and more apparent I cant seem to pick out the key points in a question to be able to write relevant things to tend to just write anything. When reading i just tend to read and not take in or be able to get the key themes from it. Though I have learnt the importance of essay planning and thing I will do better its knowing what is relevant.

I think its just I’m overwhelmed by it all and will soon settle back down again but miss the normal university set up allot at the moment

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Well yesterday I saw ENT and well it was a waste of time, confused things more than anything.

Firstly said he couldn’t prove of disprove the presence of VCD as my vocal cords were normal. Though the problem is i have problems breathing usually its breathing in but on the other hand Io had severe reflux and as I was a paramedic makes it more likely.

Anyway there was nothing he could do apart from tell doctors to sort out my reflux and speak to speech therapy again..

I have speech therapy next week

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A First Date

Well as you have read before I was trying my hand at online dating. On Thursday I met a guy for the first time.

I had been emailing home for a few days and it felt right, every message I was looking forward to and i just couldn’t get him out of my mind. After a few days of texting we arrange a first meeting a coffee, nothing special.

His name is Andy hes just turned 25 with a degree in Film (yes I know) who currently works as a delivery driver. He’s kind and gentle, who has a big heart. He knows about the problems I have and he seems to what to try to understand but there is something not quite right I don’t know if it was nerves but the conversation didn’t flow and didn’t feel that comfortable. He also doesn’t seem to grasp this is my life of feeling ill and off days don’t mean I need to see a Dr or something is wrong, bad days happen and best to leave me to it. He has been trying to make me feel better but is saying the wrong things like I like you and makes you who you are.

We have arranged another met up and we will see how this goes.

ENT on Monday…

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Family Tree

A number of months ago my gran showed me and my mum the information she had on her family tree and I thought would find out more. I have managed to track the family back to the 1700’s some people just basic details but got allot of information around the 1900’s on where they lived, what they did and where they are buried. I seem to have routes into Kent and Middlesex with family members emigrating to Canada. Anyway I have found my 3rd cousin, alive a family member that my Grandparents don’t know about.

Now I have to comply all this information into a easy to understand format.

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The last few months I have been doing a Bookkeeping course and today I got my results and well I’m dead chuffed with myself I got a ddistinction with commendation.

I wasn’t expecting that good considering through every exam I felt rubbish, my lungs didn’t like sitting exams and they always fell in my admission period so spent time during nebbing and thinking I feel awful.

Ive signed up for a computerised bookkeeping course at a different college next term.

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Jordan Sparks- The Cure

This song just gave me a small boost, just reading the words it was appropiate and gave me the warm fussy feeling inside
Hush, little baby, don’t you cry
Yeah, I know she hurt you
But it ain’t the end of your life
‘Cause I’m right here waiting with open arms
I know you might feel shattered
But love should never bring you harm

So consider this a moment
That’s defining who you are
And I can fix what’s broken
And here’s how I’ll start

Just come with your heart and leave the rest to me
And I promise that we’ll be and I’ll be the cure
Show me where it hurts
And I know that I can be the medicine you need
Baby, I’ll be your cure, your cure, yeah, yeah, yeah

I can see she left you with your heart wide open
But I can be your shelter when the winds starts blowing
So don’t be afraid of what’s in front of you
‘Cause I know I’m strong enough to carry us through

So consider this a moment, that’s defining who you are
And I can fix what’s broken and here’s how I’ll start

Just come with your heart and leave the rest to me
And I promise that we’ll be and I’ll be the cure
Show me where it hurts
And I know that I can be the medicine you need
And I’ll be your cure, I’ll be the cure
And I’ll be your cure, I’ll be the cure

I’ll be your healer in my shining armor
Just let me protect you, that’s what I’m here for
My love is a healer if you let me near you
Reach out and touch me, just let me restore

Just come with your heart and leave the rest to me
And I promise that we’ll be and I’ll be the cure
Show me where it hurts
And I know that I could be the medicine you need
And I’ll be your cure

Just come with your heart and leave the rest to me
And I promise that we’ll be and I’ll be your cure
Show me where it hurts
And I know that I can be the medicine you need
Baby, I’ll be your cure, I’ll be the cure

I’ll be your cure, yeah, yeah, I’ll be the cure
My love is strong enough, I’ll be the cure
Whenever you call, yeah, I’ll be the cure
I am the cure

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I’m not afraid to say it I’m fat or obese to be politically correct. Back in 2008 I spent the summer on massive doses of steroids and this caused me to put on around 3 stone and ever since then I haven’t been able to loose it nor have I put on much.

People who don’t know my story or don’t understand assume I eat takeaways, cake and crisps lots but though I do sometimes, 99% of the food I eat it home cooked.

I enjoy cooking and seem to be getting better. I plan my meals each week so I know what food to buy. Here is a few photo’s of food I eat.

Spanish Chicken Casserole

Caribbean Chicken

Apricot chicken

Honey & Mustard Pork

Creamy Leek and Ham Pasta

Sausage Casserole

Prawn Risotto
Asparagus and Ham Flan

Chicken and Leek Pie

Leek and Mustard Tart

Macaroni Cheese

Mushroom and Brie Pasta
Sausage Pasta
Tomato, Spinach and Ricotta Flan

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I seem to spend allot of my time waiting these days, waiting for days I have things planned, waiting for my next lot of OU modules to start, waiting for letters to arrive or waiting to get sick. Currently waiting to find out whats going to happen about my reflux (which doubt I will get decision until my next appiontment) and waiting to see ENT (24th).

I hate waiting!

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Purpose of Treatment

Today I went to see my respiratory nurse in my local and we discussed a few things that I’m just mulling over in my head.

Firstly the purpose of a specialist centre in my case. I’m finding that things seem to be taking more time here the local consultants just leave it up to Southampton leaving him knowing things he wants to try but cant as the consultants wont allow him to and he cant jump on them to do something. I don’t feel confident in Bath doing anything to help me long term if given the opportunity but I have never given them a chance to. I think that not seeing Southampton will make things more stressful for me as my consultant just doesn’t seem to understand the difficult side of things.

My local agree that something is going on and not sure if Southampton have really picked up on it since I have had multiple infections.

The second big issue was the purpose of treatment to me I want to reduce the admissions I don’t care how many drugs it takes where as the nurse really wanted to keep the steroid level down. I do understand the problems of long term steroids but there is no point not having them but still having rubbish lungs. i think it is a case of a bit of both. They agree that i wont be off medication and unlikely to be hospital free. So what is the point in medication it seems to me at the moment the number of admissions don’t seem to worry anyone and to me that’s the thing i struggle with the most. i can cope with taking tablets if they work.

Anyway he did allow me to stop my regular steroid nebs and just use them when my peak flow starts to drop and one of my tablets. But now not many are asthma meds most of them are to cope with side effects of steroids.

We did also discuss doctors in general i could do with a hospital consultant that covers everything. At the moment each consultant is looking at there little thing and to see them need each separate appointment. In peads and in USA for example they seems to be more general consultants covering everything. Its meant to be GP but I’m at the case where most of my problems cant be handled by the GP or they don’t want to ( common answer mention it to resp team)

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Meds Routine

Wrote this awhile ago and found it some things have changed thought but you get the idea

I dont sleep very well so my timing it usually a little off!

Midday- Morning Medication
-2mg Budosnide Nebuliser
-2 puffs Spirivia
-2 puffs Symicort
-2.5mg Salbutmol neb
-300mg Uniphylline
-Levocetirizine 5mg
-Omeprazole 40mg
-Risedronate Sodium 5 mg
-Domperidone 10mg
-Azithromycin 250mg
-Prednisolone 7.5mg
-Amlodipine 10mg
-Losartan 100mg
-Calcichew-D3 Forte two tablets
-Ferrous Sulphate 200mcg

-Domperidone 10mg

12pm- Evening Meds
-2mg Budosnide Nebuliser
-2 puffs Symicort
-Montleucast 10mg
-2.5mg Salbutmol neb
-300mg Uniphylline
-Levocetirizine 5mg
-Domperidone 10mg
-Calcichew-D3 Forte two tablets
-Ferrous Sulphate 200mcg

As Needed
-2.5mg Salbutmol

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