How do you write a blog post?

A phone call with author of Stumbling in Flats turned from working with pharma to writing in blog posts. A blogger for 13/14 years I have never thought about my blog posts and I have made it known that I just let my fingers do the work letting the words flow from brain to the page. I learnt some valuable information from that phone call.

A witty captive opening statement “Chocolate haunts me. Last night I dreamt a giant Jaffa  Cake chased me down the road

Im not sure I can do the witty part but I need to think about the opening statement. Something that draws people in and sets the scene of my post. I guess it is like basic story telling, a beginning a middle and an end. A story is only as good as its first sentence. If you don’t like it then you probably are not going to keep reading. A blog is just the same.

I also learnt that a post should be able to read stand alone and the reader will know what  you are talking about and not need to read every blog post you have ever written to know who you are and what your story is!

A good about page is also essential. I must update mine ASAP. The fact that I cant remember when I last updated it means it needs updated urgently!!!

The last point was post length. Set a limit. 400-500 words is about right. There are some posts where I ramble on- often when I am trying to tell a story to get stuff off my chest or just to get something off my chest!! Strange to be saying that I write to get stuff off my chest when all my problems occur because of my chest!!!

Here’s hoping for some new and captivating blog posts that I can still get the same positive relief from personally and that people might read.

I started my blog because I was struggling to deal with the impact my asthma was having only life. This was a time when blogging was not such a big thing, social media was in its infancy and smart phones did not exist. As technology evolves so must we. Blogs have so much impact on people within the chronic health community and also those who are affected by it wether that be family, friends or even those working in the medical field. The one thing that is still the same to some extent is that I still blog to help myself deal with the impact asthma has on my life.

What do you do when you have a bad or good travelling experience when you have a disability?

I have been very lucky that despite my asthma I have been able to travel (mainly to attend conferences). I have travelled via a variety of different methods: train, plane and taxis.

Thanks to the hidden disability lanyard I have been very fortunate in the treatment I have received in airports. I have also been able to use it on trains but now that I am walking with a stick I have noticed people come up to me more to offer help or get up from seats and give me theirs.

I decided to write this blog after some time to think as at the time I was angry, humiliated and really not thinking in a constructive manner. I am now thinking about how to change this negative experience I had into a positive one.

In September I went to Madrid to attend the European Respiratory Society Congress. The travel out was spot on. Arriving at the airport I had my sunflower lanyard on and was helped with my bags at check in and offered the use of a wheelchair to get me up and through security. I declined as I knew I would be seated for a large portion of the day so wanted to take the opportunity to get some walking done.

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The one point that most people dread when going through the airport is security. I know I do. Having a hidden and visible disability and wearing my sunflower lanyard I went up to the special assistance gate at security. An officer asked me if I needed some help. I accepted and she helped me take my laptop and then medical supplies and put them in the trays. She then escorted me to the bit where you walk through the scanner. She explained that they needed to put stick through the X-ray but they had a wooden stick for me to use while I got through the scanner myself. Due to my inability to walk without my shoes and splint on, they made other arrangements and swabbed my shoes, provided a chair for me to sit on while they did this and also stayed with me to help me put everything back in my bag and make sure I was ok.

Boarding the plane was the next challenge. All sorts of thoughts were running through my head. Dreading the thought that we might have to go on a bus to get to the plane and then climb up stairs to get into the plane. I was able to ask at the gate what the boarding situation would be. I was then asked to take a seat behind the gate where I was introduced to the crew and then told I would board the plane when the crew went on too.

It was all so seamless and almost had that too good to be true feeling. It was really refreshing to have such good service in what can be quite a stressful time. I have sent a compliment form into the the airport and BA who were the airline I was flying with.

On the way back the airport experience was polar opposite until I reached the gate to board the plane.

Arriving at security I once again had my sunflower lanyard on and went to the special assistance area for security. This is where I can only say I felt humiliated and felt like totally breaking down. No help was offered at all. I did asked for some help but this fell on deaf ears. The area was not particularly busy so I was shocked that my request was turned down. I sorted all my stuff and got my medication and medical devices out my bag and into a tray, pushed them up the line till they went through the X-ray. I then went to walk through the scanner and was greeted by a security officer who spoke good english and told I couldn’t take my stick through or wear my shoes or my splint. I asked if I could wait and they could go through then if I could be given them back so I could walk through. I was told no and then my hands were taken and I was just about dragged through the scanner, almost falling flat on my face. I was tripping over my foot as I cant move it myself and have no feeling below my knee. I was crying inside just wanting the ground to swallow me up, hating myself that as a young person I was being humiliated in such a way. I kept thinking I should be able to walk normally, I shouldn’t be in this situation. Once I had been dragged through the scanner, my hands were dropped and I was left to try and get myself to the trays with my stuff in and get myself sorted.

I managed to get myself sorted without totally breaking down. On the way out of security there was one of those things that has buttons asking me what my experience was like. I obviously pressed the button with the red sad face. A man then came an asked me why I pressed it. I gave a brief description of what happened and the man just nodded me. No offer of apology or anything.

I just pulled myself together and then joined the others I was travelling with, putting the experience behind me so no one would know just how upset I felt inside.

The rest of the travel home was seamless. I travelled home with Easyjet and once again the staff were very helpful. Unfortunately the seat I was in was considered an emergency exit but they found me another seat which was actually a whole row so I could put my leg up.

After all of it I was so glad to get home and back in my own environment.

One thing I have learnt and looking back I would have done things differently. While in security at Madrid airport I would have advocated for myself. I would have stood my ground and made sure my needs were met rather than be humiliated as I was. I wish at the time I had been able to stand up for myself but I was caught by surprise so I guess I was really shocked. You don’t expect it.

In future I will be prepared. I will have a written explanation of why I need the stick, that I cant walk without it or without my splint, and also what my medical conditions are. I will have this all written in the language of where I am going to. I will also use other communication cards in the language of the country I am going to. I want to be prepared and I don’t want to go through this experience again. I also don’t want others to have this experience as it really destroyed me, my confidence in travelling solo with no support has dwindled. I should be able to travel Im a young person who wants to experience life not be humiliated and shamed into not wanting to travel only own again.

If anything can come from this experience it is that I have learnt more to advocate for myself and also use my situation to prevent others having similar experiences.

A letter I would love to write to my…..

I am going to do a series of these blog posts. When I was last in hospital and immediately post discharge I was left feeling very frustrated and have continued to feel that way. I always feel like I cant quite say to the Dr’s and nurses what i want to. Not because they deliberately avoid it but they just don’t ask the question or there is not the right time to bring it up. While on the ward I started various letters that I wanted to write. One to my asthma, one to the nurses looking after me, one to the drs looking after me, one to my consultant and then one to my parents. I think the important ones are the ones to the people looking after me while in hospital and then the one to my consultant.

I am going to start with the letter to those looking after me in hospital.

(this is just a wish I could say. I know they are all doing their best etc so this is an ideal world)

To all the Dr’s,

First I want to Thank you all for saving my life on so many occasions. I really am truly grateful. The evil drugs you pump me full of, the numerous stabbings to get an arterial blood gas, or trying to find a vein for IV access I thank you. In the state of emergency when I am taken from my home by ambulance and rushed with sirens blaring and lights flashing to the nearest hospital where Drs are often waiting to take me into the resuscitation room to start saving my life and get my lungs back working how they should. At this point I cannot fault the Dr’s.

It is once things stabilise that I get frustrated with the Dr’s. Asthma is so complex often the smallest thing can trigger bronchospasm and when on the ward this happens all the time, a spray of deodorant, or flowers, or smoke carried in on clothes is all hazards that we cant avoid yet pose a huge threat to us. So often when this occurs and I have some nebulisers I get frustrated when reviewed by Drs who then say your numbers are ok just calm down. I want to scream at you at this point. I know my f**king numbers are ok but they won’t be soon and I am getting tired. I don’t want to be patronised I just want to know what is going on. What my chest sounds like, if the nebulisers are helping and making a difference to what you hear. I want you come to back once things have settled just so I know that I am not missing anything. So I know that I am stable and can rest easy over night.

Once things are more stable and I am looking for home I want someone to care and make sure that there is nothing I struggle with. So many times I have been discharged home not able to really cope, unable to walk independently, washing and dressing a struggle leaving me in my PJ’s all day. Often we get overlooked because we are young. It is assumed we will manage and not need any physio or occupational therapy support but we don’t always and often too embarrassed to ask for some help. At discharge from my last admission due to complications with my leg I was still needing help to stand up from the toilet, I couldn’t get myself up to the shower and shower without falling over. I didnt want to bring it up that I couldn’t do these things but may well have if i was asked about it. This goes along with mental health. My brain was a mess when I was discharged. All I wanted was someone to ask me if I was ok and how I was coping. It is so much easier to answer a question than bring up a subject.

Once home and then attending out patient clinic as a younger patient (which is really depressing when you are the youngest person by about 40 or 50 years) who lives with a chronic condition we just want to be asked what can be done to help us live life to the best we can despite our health. We want to live life and be able to go out for dinner and be spontaneous but we cant. When our condition becomes more complex it is so hard hearing that there is now more medications that can be tried and you are on the maximum medication that you can be. Hearing this is terrifying, we have our life ahead of us yet we have no more options in terms of treatment for our condition is a terrifying prospect. It is all about the language used.

I admire the work you do and the how you have saved my life but sometimes we just need that small question to check how we are and if we are good or not. It is hard work living with a daily routine revolving around medications and it can get too much especially when the side effects of medication cause more conditions yet you cant stop taking it. I am often scared of what is happening and what our life is like.

I would love to be able to spill all my views out to my Dr’s either while inpatient or outpatient but I never would be able to and I am sure so many others will feel the same.

I guess if there are any Dr’s reading this please thing about your patient and what might they be facing. Just because we are young does not mean we don’t need help. This is not meant to be Drs are bad but it is just some of the things I have come across and I really wish I could say something at the time but often there is no time.

Friendship when you are cant help being unreliable

A common theme when speaking to others who have a chronic illness is the importance of friendships yet so many find that there are very few friends who stick about and understand when you have to call off for the 10th time and cancel attending things.

I have found over the years that this is all too true. I have a lot of people who I consider friends but when everything goes down hill there are very few who stick around no matter what, who drop everything and will come and help you even if it is just because you’re upset and need someone to talk to.

Speaking to others how have chronic illness they all same the same thing. The feeling of isolation can leave you so low and just feel like giving up. It is funny because so many people say they will be there to support you but they are not. Often you find people offer to help when at the start of something but then after a month or so it fizzles out and you are left.

What can we do about this?

I have found that tapping in to the chronic illness community very helpful. I have found that this group of people understand exactly about how important friendship is but then also how there are only a very few that stick around. Living with a chronic illness and having friends who also have a chronic illness is a very special bond as they get it. They understand about the unpredictability of health, the having to cancel thing, or just going off the radar for a while. If this happens it is this group of friends who reach out with a message asking if you need anything or they message to say they are going to the shops and will bring food round. They don’t ask how you are because it is a useless question. Normally if asked how you are we say fine or good. It is rare that we would open up and actually say how we are feeling because it brings a downer on the situation or catch up. These friends know exactly what it is like.

I have been so fortunate to meet some fantastic people in the chronic illness and advocacy network. I have had care packages from people met at the HEaltheVoices conference in Dallas. Even though I was there for 4 days I made friends for life. They know exactly what to say and when. The items in care packages are perfect often items that other friends would not get because they don’t know what it is like to be chronically unwell.

Having a chronic illness that is so unpredictable making plans is hard, you feel like you let people down. Friends stop inviting you to events because you either say no or have to cancel last minute- eventually they just give up.

Advice I would give people is your true friends will stay around no matter what. They stay for the long term. I like to refer to those who don’t stick around as acquaintances.

Always reach out shout you need help especially those who totally understand what you are going through.

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Making asthma visible

Today my youngest brother published an article for the Daily Record. Out of all my siblings he has probably seen me at my worst. He has been there when I have been in tears because registrars cant get an arterial blood gas and they are getting stroppy because I kept flinching when they hit the nerve or worse the bone or visited me when I was in hospital down south and he was still a school boy. He has known about my passion for the issue of smoking on hospital sites as it has caused me so many issues and latterly when my asthma has stopped me doing more he has taken an interested in the work I have been doing to try and raise awareness about asthma and how severe it can be.

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It is a really hard read. Seeing everything down in black and white in one place about how asthma has controlled so much of my life. I feel bad that this article has upset so many. I know my mum was fairly upset as she has obviously been through it all with me and then Nick as well. He has lived with me and yet he didnt know or understand just how bad it can get.

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I know others who have asthma just like mine and have asked if it is ok for them to share this article. I want everyone to share it. If it can show people just how serious asthma can get then I want everyone to see it.

I have kept this blog for so long and written about how asthma has affected me, what being in hospital has been like etc but I never read back over my posts. Not one post has been proof read and thats how I like it. It keeps the emotion real and honest.

I am really proud that my brother has decided to take this on and try to help people realise how serious asthma is and that you cant always see the true effects that asthma has on someones life. It is sad that it takes shocking stories to highlight the devastation that asthma can cause.

 

Madrid with Astra Zeneca

Since getting involved in asthma advocacy and involvement in research I have also been part of the Astra Zeneca Patient Partnership Program (PPP) for Asthma. I do a huge variety of things as part of this program to help Astra Zeneca with their work to improve the lives of people with asthma. This can range from being part of teleconferences discussing potential projects, reviewing information booklets, education materials, or global virtual meetings.

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As part of the PPP I have had the opportunity to meet so many other people affected by asthma, some with severe asthma, some with mild asthma and also those who care for people with asthma.

One of the roles that I find most rewarding is when I am asked to speak about my experiences and be part of a panel. There is a lot of focus just now on severe asthma so when I am asked to speak to people within the company about what it is really like to live day to day with severe asthma I jump at the chance. Severe asthma is so misunderstood and has so many other components and not just the asthma part but the side effects from medication, impact on work or education.

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(the first event I attended with Astra Zeneca just over 3 years ago)

I have not long got back from Madrid where I was part of a patient panel speaking about our input into a project and why it is so important particularly how would it have been helpful when we were newly diagnosed. To be able to speak to a room full of people who are all transfixed on you and what you are saying is a very surreal experience but it makes me see how important my story is and why I need to speak up about life with severe asthma. When working in a large company you often don’t get the chance to meet patients particularly when medication is in development and not ready to be trialled on humans the scientists don’t get to see the impact the end product has so attending these events is key. It shows everyone just how important their work is and what the impact of the end product can be.

We also had some videos recorded about our involvement in the PPP and why the work Astra Zeneca is doing is so important.

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I have had so much fun working with Astra Zeneca. I used to think pharma was just about making money and they didnt have patients at its heart but now my view has totally changed since I have been part of the PPP. All the work they are doing they are looking at how they can include patients to ensure the work is going to make a difference to people with or affected by asthma.

I have also got to make some great friends and would really encourage anyone else who wants to find out more please get in touch. What I have found is that I am getting to see a whole new side to asthma and developments in asthma medication and management which I did not see before and do not see when I am involved in the applied side of research.

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Please drop me a message if you want to find out more about the patient partnership program and how to get involved. I have had such a great time that I would encourage others to join too!

(Please note AZ has not told me what to say and all my opinions are my own)

Post ICU respiratory clinic

I started writing this on Wednesday 9th October as I sat in the waiting room having checked in to clinic. I had so many expectations from clinic and pinned so much on it yet left feeling deflated.

“Sitting in clinic with butterflies flying around my stomach. This is my first clinic appointment with my consultant since being discharged from hospital 2 months ago. I feel like I have been living up at the hospital with seeing so many different people from neurology, muscular-skeletal physio’s, neurology physios, psychologist to name a few. So let’s just add respiratory consultant into the mix to. I think out of all the appointments this is the one I never want to come around. Why? Because I know we are going to be going over what happened and the events leading up to me being on life support. Despite it being 2 months ago I am still not ready to face or talk about what happened or to be told about what happened. I am trying to adapt to my new normal with my stick and leg that has half it’s feeling which in itself is a constant reminder of what happened and how unwell I was. 

Just now as I write this I am sitting outside lung function waiting my turn to see how awful the results are and would give everything for the out patient people to say they got the day wrong and don’t need to see me. My stomach is flipping and it shouldn’t. The consultant for my asthma is here to help me and make things better not worse but I just don’t want to go and see him. Unless there is a magic wand to be waved I want to just get on with stuff myself. Unless there is a new medication on the table or something to improve my health I’m not to bothered about being up at the hospital all the time as I can manage myself just fine if this is how it is going to be”.

This is as far as I got before I was called in to the dreaded lung function room, and as soon as I was out of there I was called in to see my consultant.

How did it all go?

Well lung function was the same as it was at last clinic. I guess that is a positive given that I have had a major attack in between these clinic visits. Then my actual appointment didnt go how I thought it would. I had the expectation that we would be going through the events that occurred during that last attack but we didnt. I had worked myself up thinking this is what we would discuss. I know I sound like I am just moaning because at the start of this post said I was not ready to talk about what happened but so many people had said this is what would be happening so I worked myself up.

I have to go back to clinic again in 7 weeks so will see what is said then.