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.
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!!
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.
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
Its the 14th of December. A day that seems to come round each year all too quickly. Now it is not only one person I lost on this day but 2. There are not many days that you will remember exactly where you were and what you were doing but for me the 14th December I remember exactly what I was doing last year and also 20 years ago.
20 years ago my Uncle tragically died. I remember it so well and I hate that I do. Me and my younger brother were at my Dad and Step Mum’s for the weekend. We all went to bed on Saturday night as normal. Early hours of the morning the phone rang and it was the call to say Uncle Dermot had had a traumatic brain injury and was down in Nottingham in the hospital on life support. It is so strange the things you remember, while Dad was making arrangements to drop us back off at our Mum’s and go down south, me and P were in the front room and he came out with ‘there would be no more Kukuri’s’. I have no idea why it stuck in my head. Uncle Dermot was an officer in the army and travelled far and wide. He had no kids of his own but would bring us gifts back from his tours. I think now they would for sure not let him give us things such as kukuri knives and other souvenirs from various countries. Dad took us back to Mum’s, on the doorstep I remember Mum giving Dad a big hug. I don’t remember my emotions at all really. I went to school as normal on the Tuesday and it was on the way home that I realised the enormity of what happened because it was on the front page of several newspapers with his picture which you couldn’t miss. We didnt spend a lot of time together as he was away most of the time but looking through his photo albums which he kept throughout this life as a sort of diary I realise just how much of packed life he lived. In a short 36 years he did some of the most amazing things. When he was home on leave he would always make time to spend with us.
The comment that went with these photos made me smile. The first one was Dermot meeting me for the first time but keeping his distance. The second photo was ‘somehow ended up with babysitting duty’.
This was taken before we left Granny and Grandpa’s when Dad got married to Carol. My second cousin Fio is the other person in the picture.
Uncle Dermot with me and my younger brother.
I really enjoy looking at his photos. He makes me feel very proud that he was my Uncle. All he achieved is amazing. It is scary to think in 3 years time I will be the same age as he was when he died.
For a few months I think Dermot was stationed at Edinburgh Castle. I recall thinking it was amazing that he was living in the Castle and was able to take us round. The stick my brother is holding is Dermot’s officers cane.
Not only did Dermot die on the 14th December but last year Granny also died. There is something rather special about her dying that day. I don’t think she ever got over Dermot dying. He was so young, how does a mother ever get over the death of a son. I don’t think you ever do.
Since my Grandpa died I became a lot closer to my Granny, spending time with her, tasing her out to different places. Throughout all the troubles she always had my back and would look out for me. I never thought she was going to die when she did but there was something so peaceful about it. I got a phonecall about 3 in the morning that Granny was struggling to breath. She had a bad chest infection which was making her asthma worse. I went to the nursing home in the middle of the night and sat with her waiting for the Dr to come. She had some nebulisers and it settled her chest really well. So once she fell asleep I left and got some sleep. I visited Granny after work and she was brighter, and I wrote some more of her Christmas cards which she was desperate to get out but didnt have the energy to write them so I did them. An hour or so passed and she got tired so I left and posted the cards. Just over an hour later I got a call from the nursing home to say she had died. I was devastated- it was so quick, I had only been there just over an hour ago and she was chatting to me and now she was gone.
(I love this photo of Granny aka Great Granny Annie proudly holding baby James)
I took a lot of comfort from her dying on the same day as Dermot died and also she joined Grandpa who she dearly missed as well. I do miss visiting Granny and all her quirks- she drove me round the bend a lot and could get so argumentative at times when I just give up and say yes!!!
The 14th December is a day I find really quite hard but reflecting back on memories and the good times makes it that bit easier. I know one day I will join them as well and be reunited with Uncle Dermot, Granny and Grandpa.
I found this photo of Uncle Dermot in his photo albums. I love the silhouette and it reminds me of the soldiers who are gone but not forgotten. Uncle Dermot and Granny may both be gone but they will never ever be forgotten and Grandpa won’t be either.
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.
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.
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.
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!!!
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.
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!!!
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!!!
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.
(two missing from this photo of players!)
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.
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.
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.
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.
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!!!
(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.
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
Everything seems to be a bit negative just now and I really don’t like it but I do find writing down things that bother me cathartic and really help get them out my head and mulling over them. It is often things I won’t speak to anyone about as I think people would be bored of hearing me moan but also they really have absolutely no understanding of what it feels like sometimes.
My biggest issue I have with my asthma is that there is nothing I can say caused it to get bad. I have not always been a perfect patient and not always taken medication as and when I should (I learnt my lesson with that and now keep to a strict regime) but I desperately wish there was a cause for it to have got so bad. No matter how much I try I really cannot come to terms with the fact that there was nothing that I could really do to prevent this. It just happened.
I am hugely anti smoking yet so many of my family smoke and they don’t get that they take their breathing for granted. They have all seen me have asthma attacks yet they still smoke. They also don’t think when they light up and leave a door open that it will bother me, they don’t think that the smoke stays on their clothes can have an effect on my breathing, they just don’t think because they take their ability to breathe for granted. If I make a fuss that they have lit a cigarette around me and I get a face full of smoke they get all annoyed and tell me to go away, I am the one that ends up moving and having to stop what I am doing to accommodate them when they are inflicting something I a) chose not to do and b) something that negatively affects me. I would never wish my asthma on anyone but sometimes I would love for them to feel what it is like for me to breath on a daily basis but also when I am near smoke of any kind. It is horrible and to know that this is your family members that are doing this is awful and they just don’t see it. Years down the line they will have damage to their lungs and suffer the consequences of it but weirdly in my mind at least they have a reason for having bad lungs. It was what they chose to do to themselves so they need to live with the consequences of it.
For me I don’t have that reason or any reason. I have just bad asthma that wants to control my life and requires medication several times a day to keep it in check and be able to breathe adequately.
This now is a total moan- even more than what I have just written but those that smoke and then they get a cough or cold hey feel their life has fallen in. Someone said to me that so and so was not well and had an awful cough. I turned round and replied that if they chose to stop smoking or smoked less Im sure they wouldn’t feel so unwell or have such a bad cough to which I was told I was not being very sympathetic or supportive. But hello….they chose to do it. How can I be supportive or sympathetic to someone who will most likely not give two hoots about lighting up a cigarette and won’t care who is around and who it is going to bother.
I really hate it if you can’t guess. It seems to be more prominent now as well. Everywhere you go there will be someone smoking in a 5m radius of you. Its disgusting but god forbid you make a fuss. I remember once needing to get into a restaurant but a man was smoking in the doorway. When I asked him to move so I could get through avoiding the smoke I got a whole heap of dogs abuse for it. Smokers think it is their right to be where they want and smoke without giving a care to anyone else.
This brings me onto the ridiculous idea of having no smoking on NHS sites. I still can’t believe that I really don’t agree with it and wish they would reinstate smoking. Now I can’t walk around the hospital grounds without coming across someone hiding behind a corner trying to be out of site smoking because they are too lazy to go off site. At least before when there was the smoking shelters you could avoid them but now it seems like no where is safe. It makes even getting from my car and into the hospital more hazardous than it was before.
I am such a grump but if you hadn’t guessed smoking it really getting to me just now and I want to scream at people who smoke. I would love them to do a day in my shoes and Im not even that bad compared to many people. I should be lucky I have the health I have as so many have it worse than I do but just now I can’t let it drop and I keep getting so wound up by it. I am hoping that by writing it down and getting it off my chest then I will feel better for it.