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.

Attention

I’ve written about this person before but I need to vent again. She continues to make up things to gain attention currently she is cutting herself and she said she was section (but only for a week) and the whole thing just doesn’t ring right to me. I do understand cutting can be a serious medical condition but I was under the impression they suffered in silence. This girl has been to ED 57 times since Christmas. She’s known to the crisis team and was upset when they asked if she asthma attacks were attention seeking too. She says now she’s only going to ED now when she cant breath, is wheezy or PEF down but that doesn’t really cut down anything as panic attacks leave you feeling like you cant breath.

She is also self-centred. She never takes into account how others are feeling, all messages are about her even if she asks you how you are, the next message is about her again.

I don’t know what is true with her or not

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ENT

Well finally after months of badgering get to see ENT again to discuss VCD if its still present or not.

First struggle was to get a referal. SOuthampton just went yes that’s a good idea and then nothing happened. BAth took note that I haven’t seen them a number of times before putting on a letter to GP please consider referring. With my GP took note.

After my Gp had agreed to refer me yet more trouble, they had referred me but forgot to inculde a letter so couldn’t book an appointment. Four times rung the referral service and twice the surgery to ask when it will be done.

Anyway its done got an appointment on the 24th September. I really hope I get a understanding consultant. I have done my research into possible options!

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Never Give Up

Well I managed it I saw Steps and it was great. We took a picnic and chairs and I didn’t feel bad for sitting down the whole concert, I chair danced.

I do feel horrible now and there were times during it I was starting to struggle I am now fully drugged up. There were loads of people smoking near me but there were no smoke machines in use but now have hayfever so not sure if outdoor concerts are better or not. But would certainly do more of them!

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Would You???

I’ve been talking to a guy on line (through dating site) for a while and we’ve hit it off, he knows about my lungs and spending allot of time in hospital he says it doesn’t matter to time but not sure if he quite understands. Anyway he disclosed something to me and Im not sure what I think of it. He was in prison for dangerous driving and ABH. He was a bus driver and had an argument with a cyslist and hit him (in the video it looks like he moved to hit him) the guy wasn’t badly hurt and since then this guy has had anger management classes and shown remorse. But I dont know if I could met with him in case he lost his temper on me… but on the other hand I’m all for forgiveness.

I’m not sure if its because this is the first guy to show a real interest in me and knowing about the asthma or not…

I’m struggling to decide..

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Statics

A months worth of my medication costs over £500

I’ve had 7 Intubations

I’ve been on Bipap 12 times

Been admitted to ICU 12 times

Been to hospital 90 times for my asthma, just to ED 16 of those

Spent 210 nights in hospital

On 21 different medications

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Questions I get tired of answering

#1) What triggered your asthma attack this time?
#2) Why does your asthma get so bad?
#3) Have you been coughing more recently
#4) Do you know how to check your peak flows ?
#5) What can we do to keep you out of the hospital?
#6) Have you ever been intubated for your asthma?
#7) Why did you wait so long to come in for treatment?
#8) Have you been taking your medication?

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Hospital Review: Newport

I haven’t been a inpatient in a strange hospital for a while so here’s my experience of this hospital.

Staff- ED Dr’s weren’t very nice didn’t seem to listen or take note of what I had to say and felt I was keeping him from something. The other doctors I met were great they listened and took note and listened to my opinion. The nurses were generally ok apart from one which didn’t have for long who talked to me like a child.

Food- The food was hit and miss, it was no better or no worse than anywhere else

Wards- The view from my ward has to be one of the best, looked out onto a pound with ducks and a hereon. The cleaning staff were nice and talkative when I was alone and the toilets weren’t that far away.

Communication- Well there was a lack of this a few times dr’s changed the plan and didn’t tell me and the discharge summery was confusing saying one thing then another

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Old People in Hospital

I spend allot of time around the elderly whilst in hospital and there views on nursing and being in hospital is interesting particularly the ones from nursing homes.

A number of times this stay I’ve heard I want a softer pillow now please.

They seem to think they can get whatever food they are used to whenever they want.

Seem to think nurses are only there for them

Don’t understand hospitals are 24 hours and they have to do things past midnight

Don’t realise they are sick and therefore observations need doing

Don’t understand nurses cant lift or carry them

They old back in my day gets on your nerves, usually its about something like getting dressed during the day or going to a day room etc.

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Family Hoilday

Every year still at my age we all go on a family holiday this year is the Isle of Weight. The first week in July is meant to be nice, it rained 6 out 7 days though I spent 3 days of it in hospital (now it isn’t my holiday but still captured) luckly I saw the sunny day and in typical me fashion I got sun burnt.

I had to share a room with my sister which I am not used to anymore, not used to sharing with anyone. The flat with big enough we weren’t on top of each other.

Sunday- journey to here, followed by the walk down to the beach and I could manage to walk there and back.

Monday- was raining all day, in the morning mum and dad went food shopping (to save space in the car we only brought the essentials) followed by a trip to a little craft village where we played on some old fashioned amusements and got my fortune told by a machine that was surprising accurate. Followed by bowling on the pier.

Tuesday- Went to Ryde on a search for a fishing shop that we never found. The last time we went to Ryde I walked up a massive hill and ended up in hospital, i walked up half of it slowly and stopped for dinner where I had gammon and chips for lunch. We walked along the seafront but i was shattered by this time. I needed to go to bed once we got back

Wednesday- Dad managed to go fishing so us 3 girls went to the Zoo, followed by a cup of tea in a little cafe on the seafront I was still really tired so after got home back to bed.

Thursday- It was sunny and yet again Dad could go fishing so we went to another nature centre which had loads of baby ducks! In the afternoon after a rest went down to the beach and sat reading my book and went for a paddle. My grandparents came over to meet us for a few days away. So in the evening we sat and chatted.

Friday- It was back to raining, Dad and Grandad went fishing so mum, Jenn and Granny went to Shaklin, we walked along the seafront. Granny got tired and with no-one with her turned around and walked back. We sat in a little cafe and had a cream tea. I was feeling rubbish and went to bed when we got back and things didn’t settle and ended up here in hospital stuck on a Island alone now.

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Places I Want to Visit

This is a list of places in the world I want to visit some to met people and some as they look nice on film

  • Leicester to Visit E (hoping to go in August)
  • Edinburgh
  • Hawaii
  • Verona
  • San Diego… again
  • Amsterdam
  • Thailand
  • Lock Ness (hope to go when in Edinburgh)
  • Sydney
  • New Zeland
  • Victoria Falls
  • Oxford
  • Cambridge

Im up for new idea’s to add!

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