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.

Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!

Feeling much better and more positive!!

Its now the end of the week and since my last post things have been a lot better. I must say the support I have received over this week from others who also have chronic health issues has been over whelming. It was both reassuring and shocking to read comments from people saying they could have written what I did as it could have been them. This is awful that so many people are struggling with their conditions and feeling isolated but then also gave me reassurance to know I am not over reacting about the situation I find myself in but it is perfectly normal.

But this shouldn’t be perfectly normal when living with a chronic health condition. It has really rocked me reading all these comments. I thought maybe one or two people might have had a period of time feeling similar but not the sheer number. It has really made me want to do something to try and combat this but I am not sure how and I am not sure what to do.

The wanting to do something was reinforced today even more so when I met up with another severe asthmatic in Edinburgh. It was so easy to talk and even though we had only met through a support group it was easy to chat and there was a mutual understanding of how shit life can be with severe asthma and the restrictions it can put on your life.

Feeling a lot more positive about things now and know I am not alone and can ask for help. It is not a weakness to need help but a strength to recognise when you need to ask for help.

Tomorrow I have a busy day as it is the Leith Gala Day at Leith Links and the ICU Steps Edinburgh support group which I am part of have a stall at it to raise some money for the charity and raise some awareness about us and what we are there for. In-between doing that I am at the Sick Kids for the launch of a children’s patient and public involvement group too and will speak briefly about my experience of being in a PPI group. After that a trip up to Thurso to see family to really clear the cobwebs and reset the clock ready to face the world again.

 

My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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To my new family and my tribe #HealtheVoices19

Wow where do I start. It takes a lot for me to be left speechless but I am unable to put into words the emotion and feelings from this past weekend. It sounds a bit cringe to say but it has been truly life changing.

I have made so many new friends who I know will be friends for life.

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To all my new friends from HealtheVoices you all have no idea how much I have appreciated this weekend. The main reason for why it was such a big deal was in November I had a near fatal asthma attack. What was different about this asthma attack was that the asthma consultants were basically there right from the start of the attack. Then the ICU consultant told me if we didn’t turn the cornerstone we would be running out of options and I really needed to turn the corner ASAP. Thankfully I did turn the corner but the attack left me traumatised and I still am living in fear from it. I fear I may not be able to fight the next attack, I fear who will be with me if I have another attack and will they be able to cope. I was also terrified that I would not manage the flight. I know my family were really worried about me coming over on my own but I had to do it for me. I needed to be able to prove to myself I can do it.

Before I came out to Dallas I didnt know what I was going to do moving forward.

Asthma has cost me so much in life and it still does but being able to be among people who know what that fear is like and you don’t just pity each other or say “yeah I know what it is like” you answer it with comments about how you over came adversity and give ideas on how I might do the same. I also had to give up my job which I loved but despite this doors have opened and I will be moving on to great things and with the inspiration and motivation I have taken in from this weekend I will not be looking back.

The other great thing is that I know there is life beyond being ill and you can use your condition to better yourself and to better others as well. I may not be able to control my asthma and control my health but I can control what I do with it and use it to help make changes for others.

I feel so included in a very special group of people.

You guys are all my family and my tribe

x

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2016 Round Up!

2016 has been a pretty awful year. There have been highs but there has also been some mega low points so like much of the world I am looking forward to 2017 and to it being better than this year has been.

January, I guess the start of the year set it off, after being admitted to the intensive care unit on Hogmanay with my asthma. This really took it out of me as for the first time I could not work out what went wrong and why I went downhill so quickly. It still haunts me to this day about how it all went off so quickly.

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Then after being discharged too early (i am one who will go as soon as possible but this time I wasn’t and knew I shouldn’t be going home but the Dr’s were not listening!). So two weeks after discharge I got readmitted and spent my 30th birthday on the respiratory ward which I know all to well. So I guess its not too bad as I knew who everyone is etc but its not the best feeling.

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Photo from on my 30th birthday. At this point I didnt think the year could get much worse. I was off work so long and really worried about being able to keep working. January was one long fight and I was so glad so see the back of it.

February was a better month. Spending time with my nephew making pancakes and also being part of the Scotland squad. Despite the my last hospital admission occurring mid Scotland training weekend I was still able to trial for Home Internationals in Guildford Surrey later in the year so it gave me focus. Having that focus was a huge thing for me and a real positive in what seemed like a whole heap of negativity.

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March was my nephews 3rd birthday- so always a good time to spend with the family celebrating and eating cake!!! I also went to the Scottish Parliament again in March with Asthma UK for the cross party group on Asthma. This was the last one held and there has not been another one this year which is a bit sad as Scotland really is leading the way with asthma research and big data research looking at whole populations in databases rather than bit parts. Hopefully we will have another CPG again soon. At the end of march I also moved house. I moved from my 1 bed first floor flat to a 2 bed top floor flat just round the corner from where I used to live. It was the best move ever!!!

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April- this was the start of the year becoming good. The hard work I put in paid off. My asthma was semi under control. Or as under control as I could get it. But I was able to travel to Guildford Surrey as part of the Scotland B squad for Home Internationals playing England, Wales and Ireland. It was a dream since I was at school to play for Scotland, pull that blue or white shirt on and sing Scotland the Brave in front of a crowd. I got to do it and it may not be much to some people but it was the most awesome feeling. I enjoyed it so much and was really proud to have been selected.

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My club team also won the final four weekend of the Mixed clubs tournament which was great!

May- there was more lacrosse. Capital won the MacRobert Mixed Tournament, Capital won Community Engagement Club of the Year along with Edinburgh City for the after school club we run. I was also elected as Development Director for the Lacrosse Scotland Board. It was a big month lacrosse wise but also it saw world asthma day which was a much quieter affair this year than previous days. Softball and the Laxadaisicals started back up for the season!! Softball was great to keep team spirit up while there was not so much Lacrosse going.

June was a huge month and one of the most positive months of the year. Mainly because I was so busy but also because through March, April and May I had been trying not to do so much to enable my lungs to be good for what was going to hit them. We started off with a trip to Italy for my Mum’s 60th Birthday. It was amazing. A big villa in the mountains with all the family just about. My older step sister and her kids couldn’t make it due to school and the fact my youngest nephew was not born yet!!!

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June continued to be an awesome month as I travelled to London to join some americans who were over from America. We formed a team called International Inferno. The girls were from Florida Southern University and their coach Kara who had just won the NCAA Div 2 Championship. I joined them in London for a weekend and had a great laugh getting to know them and playing lacrosse with them. To say I was slightly nervous was an under statement as they have come off the back of a championship win and I am a goalkeeper who has been in the goal about 6 months!!!

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After London it was a quick turn around and the travelled to Prague to join the team there for the Prague Cup. Prague was a great experience. We were second in the tournament but it was so much more than just coming second. Have made some great friends and hopefully will see them all again soon.

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(two missing from this photo of players!)

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Coach Kara Reber in the middle in yellow!!!

So as you can see June was a huge month!! July was a month for rest and recovery and thats what I did. I really feel my body took a hammering from the constant go go go but I wouldn’t change it. It was the really good pick me up and also the sort of finale to my lacrosse playing days. I was ambitious after Home Internationals but could not resist the chance to go and play in Prague etc. Im so glad I did it. Going with your gut it a great thing!

August started off with a trip to London to speak about living with severe asthma. This was a great opportunity as I was not speaking to your average people about asthma but I was speaking to the creme de la creme of asthma researchers and Drs. I was speaking to Drs who I have read about and wanted to be under because of their expertise in asthma. The likes of Ian Pavord and Adel Mansur. I was speaking to them to give them advice of what it is like to live with severe asthma, and the trials of living on steroids. It was a great experience and I ended up coming back with a new area of interest. I joined a group of paediatricians to collaborate with them on a bid proposal for a piece of research. It was amazing being part of something from the birth of it and the idea of it to the grant application. Also this was one of the first times I was a co-applicant on a bid. Something new for me (after this year not my last either!!). My high of the start of the month was short lived as not long after my return from London I ended up having a severe attack and ending up going to intensive care for a few days and then a further week or so in hospital. I kind of pushed to get out of hospital as had big plans in September which I was not prepared to give up on (I did end up not carrying out my plans but more of that to come). This admission was tough. Access was a nightmare, they couldn’t get an IV in. I ended up asking one of my colleagues from renal to come and try cannulate me but not even they could manage it which is so unusual- renal nurses get blood out of anyone!!! It took a while to get off the IV aminophylline as well. But we got there and I got home.

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This is a photo I like..I used my oxygen to blow up a frog balloon thing my nephew got on a magazine. I wasn’t able to blow it up (obviously- don’t think I could even now) but thought it was a funny photo!!!

September started off with me making difficult decisions. I pushed to get out of hospital because I had big meetings coming up. I had been invited by Astra Zeneca to come down and talk at their annual meeting which they were hosting in London ahead of the European Respiratory Society Conference. I went down to this and gave my talk. I made some amazing friends, one who has had their life changed by new drugs out there and the other who has asthma like me and can totally understand how it feels. Its not often you get someone who just understands but he does, and then you have someone who proves your life can be changed by drugs which has renewed my hope in the one day there will be a drug I can get which will change my life around.

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After the meeting I was meant to stay in London and meet up with Jess a fellow brittle asthmatic who I have spoken to for about 10 years after meeting on the asthma UK forum. I was also meant to be going to a meeting with the European Respiratory Society as a patient expert on a project they are involved in and finally I was also invited to the House of Commons for a drinks reception held by asthma UK but I decided to head home on the Friday night and miss these meetings as I just wasn’t well enough. I didnt get to meet Jess either but we both agreed there would be other times!! I also had clinic in September. I am lucky in that I can contact my consultant should I need to in-between clinic times so clinic is just a touch base time. Nothing was changed and we are just going to keep going as we are and tackle each blip as they come!!!

September I also took on the position of assistant manager (AssMan) of the Scotland Senior Womens Lacrosse team. I was so thankful for this. Since not playing I have really wanted to still be involved in Lacrosse but not knowing how, so by being asked to be AssMan I was thrilled. I have found I can still use some of my sports science background and help out with the exercise testing of the players and help with the goal keepers too. I really enjoy the job and so thankful for it.

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September ended with another new experience. I was interviewed for a book which I am being featured in. The book’s working title is Healthcare Hero’s and I am being featured because of the stuff I do for research and with lacrosse in spite of my asthma. But as I said to them at the end of the interview if I didnt do what I do I would be in a big depression and have nothing to live for. Its simple as that.

October was a quiet month. I didnt feel great most of it to be honest. I was back and forth to the Dr a fair bit and emailing my consultant to. I was not really bad but not great. That horrible in between time. I managed to hold out most of the month until my GP decided enough was enough and got me in to be seen. It was a useful admission as it meant we sorted out my main relief from the chronic lung pain I have from all the exacerbations but also got rid of this viral thing I had. It was pretty uneventful other than all the junior Drs were terrified of me as I sounded awful but not awful for me!!!

November was a fairly big month too. We had the annual scientific meeting for the Asthma UK Centre for Applied Research. This was hosted in Edinburgh so I got to stay at home but it was great to meet more PPI members who I have not met before. It was an interesting meeting and also amazing all the research which is going on. Later in November my best friend got married. My little brother payed the pipes. It was held in Edinburgh Zoo and it was an amazing day!! I loved every minute of it. I just wish I could have stayed to the end but my chest was just not up for it and I had to leave. But Jenni looked amazing and both her and Rich looked so happy.

Later my brother also got married up in Loch Tay. They had fantastic weather and could not have asked for a better day. Slightly chilly but clear, no wind and no rain. What more could you want.

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Me and my nephew at my brothers wedding.

December to where we are now. December brought the meeting of Jess and her beautiful and wonderful canine partner Xenna. We have waited 10 years to meet but once we met it was like we had always known each other. Poor Xenna didnt get fed till late one night because we were just chatting and didnt realise the time till she started whining at us. She got fed very soon after that don’t worry!!!

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(me making Jess look like she has a ta!!) It was so great to meet you!!! One of the strangest things happened though. When we were wanting around the museum Xenna kept staring at me and walking over to me. We think this was because she was picking up I wasn’t well and was getting chesty. She did it several times.

Sadly not long after Jess left I was admitted to hospital with a chest infection. Maybe Xenna was right and could detect I had a bad chest and was brewing something. Even though she is not trained for that. It was very odd. The admission was fairly uneventful and I picked up ok but I was determined to get out and be ok for Christmas and be with my family. It was slightly stressful as didnt let everyone know I was admitted as it was rather routine but news got out. I just want to get on with admissions quietly and my own way unless I am critically ill and going to intensive care or high dependancy then I let everyone know as I would be AWOL otherwise!!!

Christmas came and went. A small quiet Christmas up north with my mum, step dad and youngest brother. It was a lovely time. The weather was awful- very windy, snowy, raining and cold but it meant we could stay in by the fire and reads books and chat.

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Today was back to work and face reality before Hogmanay and we welcome in 2017. Here hoping 2017 is a better year health wise than 2016 has been. I have to be honest it has been a long slog and really hard work. There have been some awesome highs but some really bad moments and some movements I never want to go through again.

Motto for 2016 has been Dum Spiro Spero

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How do you get used to to living in a state of instability?

You don’t….

I like my life to be quite ordered. I like to know what I’m doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not to bad but the last month I would say it has been teetering on a knife edge. Never quite knowing when things are going to tip but desperately hanging on.

It is that very difficult period where your just sort of suffering. The nights are long and a little frightening as my asthma always gets worse at night. I finish work at four and have often been in bed by 6 using my nebulisers but just exhausted from getting myself through the day without getting sent home or worse ending up in A&E. Part of me wants to just hold my hands up and admit defeat but I can’t. I have to keep going.

If I am honest I feel alone just now. I sort of feel like I am on my own with this horrible condition even though I know Im not. I have lost a lot of my vital support networks which I didnt realise I heavily relied on even when my breathing is good. Matters out with my control have meant that to protect myself I cannot show true self or leave myself vulnerable to others, in doing this I am protecting myself but I am also isolating myself and I hate this. I loved being part of the support groups being able to help others and receive help and support myself too.

I really hate asthma just now and how little it is understood.

If only it could go away or a cure could be found soon. I try to be strong but today I can’t be. Today I want to hide in my flat and curl up in bed.

One of the other things I hope that by just not doing anything this weekend is that I still have a massive fear of going to A&E again. The fear of not being listened to is still fresh in my mind and that resulted in me going to intensive care because a nurse thought he new best, I was young and was not that bad. I hate to think what would have happened had I not had my own nebuliser with me and had I not know my own chest. I mean even with my own actions I couldn’t stop myself ending up in intensive care and this really terrifies me. I fear that I will end up being looked after by the same nurse again, it may be an irrational fear and the chances are slim but it is still there in my mind at was was already a scary time and it was just made worse. As a result there has been times when I may have had to go to hospital but did because I just stayed at home and would do back to back nebs- maybe more than I should have but the fear was paralysing and I can’t explain that fear to anyone.

I have to look at the positives though. I have had the most amazing summer doing things I never thought I would have. I made some awesome friends and played more lacrosse than I could have dreamt of so while I don’t feel great I can sit and look at the photos and memories of the summer and smile knowing that with hard work I will be able to do this again!!