2019 the good, the bad & the ugly

With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here .

My thought for 2019 was:

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

Well I guess some of it is correct but I am pretty sure when I wrote that I did not think I would be in the position I am now in, it has not been all bad though!

I have focused on trying to improve my health. I made decisions and took steps I never thought I would to really put my body first. I gave up working in the hospital to try and get my breathing better. To start with this was going well but after a few very traumatic asthma attacks my life has been changed and Ia have been left with more permanent damage and had to come of biologic treatment as a result. I am working hard though to over come this. I am determined I will get my independence back and be able to walk without a stick. I may not get the feeling back in my leg but I can work with this. Along with work I decided to not travel to various things mainly lacrosse because I felt I would not be supported and I would not be able to prioritise myself.

I have continued coaching lacrosse at schools, universities and with Scotland. I gave up working with the senior team and focus on working with the goalkeepers in the U19 set up which has been so rewarding. The U19 also brought me all sorts of things back from their World Cup which I was gutted I couldn’t go to- mainly due to poor communication from the seniors letting me think something different but then it turned out I was in hospital too for it. I am looking forward to this year and being back with the U19 Scotland team. I am still coaching at schools and picked up a 2nd team at Edinburgh University so now coach the 2nd’s and the 3rd’s. I am loving coaching and find it so rewarding.

Research and advocacy as always has been a big part of the year. In fact travelling to a huge advocacy conference in Dallas was life changing. The HealtheVoices event was something else. I loved every minute of it. I made so many friends and realised that I am not alone in what I am trying to achieve. Speaking about your own experiences and how to navigate living life with a chronic health condition is beneficial for others. You can make changes even if they are small. I will be forever grateful for my time in Dallas. I also had other events where I was presenting including some pharmacuetical internal events, wider NHS events where I made some great friends and we are going to try and pull off some great things this year, went to Madrid for the European Respiratory Society Congress where I had a poster accepted for the patient day, presented a poster at the AUKCAR ASM as well as some other virtual events too. It has been busy and I think will only get busier this year. I have been able to write for a pharma company who have a website called Life Effects where I can write articles about my experience of living with severe asthma. Off the back of HealtheVoices I became a PEARLS Ambassador through the work of Rick Guidotti which has been great and have got to know some of the other ambassadors too.  So far I have several events planned for 2020 that I am speaking at and I am sure there will be more as the year goes on.

The biggest part of this year has been getting Ghillie. Ghillie has been life changing. I cannot believe that I got him in April. I cant imagine life without him now. He is achieving so much and is always there for me. I will do a post just for him to update on how he is and what he is doing. I never thought he would be as good as he is now. He can be a total monkey but then when I am not feeling good or am struggling he is there to comfort me and help me with things. Topping the year off with him being a feature in a newspaper article all about what his role is as my assistance dog.

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What are my hopes and aspirations for 2020. I want to continue as I have with 2019. Focus on my health and do what I need to do to ensure it can be the best it can be. I am sure like with 2019 there will be hospital admissions, hard times, illness, frustrations but I can over come them. I just need to be patient and work my way through things. I want to grow my toolbox of skills that I can use to better myself and use my experiences to help others. My friendships this year have suffered a lot- mainly because I have struggled so much and been so unwell that I cant attend things so I end up bailing on friends and they get bored with me always cancelling so don’t invite me to things anymore. I want to try and change this and make a real effort to go to things. I value my friendships so much and don’t want to lose anymore.

2020 is going to be a year of positivity, focusing on finding my best self and feeling content with life.

I hope everyone has a fantastic 2020.

Live the life you want to live.

Friendships from HealtheVoices

My social media platforms have been filled over the last few days with posts about HealtheVoices. The application deadline has been and gone. Yesterday people received their emails saying that they were accepted to HeV20 or were waitlisted or did not get in at all.

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It fills me with joy and sadness. Sadness because I made so many friends from HeV19 that I won’t be able to see this at HeV20. With my health the way it is there is no way I can make the long travel without health consequences and be able to enjoy the conference. I am really frustrated by my health and I have always been able to beat it, get on top of it but not this time.

I am so thankful to have been able to meet some wonderful people who have stayed in touch with me. They included me in their group conversations welcomed me into their fold and I just felt like one of the gang.

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I am excited though that thanks to modern technology and the wonders of prednisolone and predsomnia I will be able to log on and watch the HeV conference live from the comfort of my own bed.

My favourite moments from HeV19 were:

  • At the opening session being pulled up for wearing a matching “plaid” shirt. Thank you Gabriel Nathan. You are excused as we have so many more matchy things!!
  • Being given a mahoosive bag of swedish fish from Kathy who we actually ended up put on the same table too!!
  • Presenting about being a patient partner in the same session as the awesome Tonya Hegamin. Her books are brilliant.
  • Having the mick taken out of me for my breakfast choice but then getting a care package of “breakfast soup” socks from AnnMarie. Also lip syncing Spice Girls with her Brady and Robert too.
  • Meeting Scott White the company chairman of J and J and bonding over living with severe asthma!!
  • Meeting and being brought into their fold the baddest bunch of diabetics particularly those we went to In and Out Burger Tripp, Phyllis, Chelcie, Christel as well as Corinna, Sue, Kristen.
  • Getting some awesome headshots from Rick Guidotti and becoming a PEARLS Ambassador
  • Meeting the fantastic HeV team who go above and beyond to make sure every advocate is happy, healthy and comfortable.
  • Lastly spending some awesome time with Mike and Eileen in Dallas. Its not many people I would happily wander through a graveyard with- Eileen!!! I had such an awesome few days with you both and it topped off a great trip!!

For now I want to leave all these photos of friends I made and friends I will hopefully see again perhaps at HeV21 if I get in!!!

 

 

Its ok to cry

I hate crying. In fact Im not sure anyone would say they like to cry. It is an emotion relating to sadness and distress so one we never want to experience if possible (There is the odd occasion that laughter renders us crying in which case it’s not so bad).

I am not much of a crier and it takes a lot to make me cry. Giving up my job really left me pretty low but I didnt ever cry about it. I was upset and close to tears but never actually cried. I am the same in clinic appointments I get upset but never shed a tear.

The few last weeks I have found really tough. I have cried a lot which is when I realised just how tough I was finding dealing with my health just now. The first time I cried was with my physio when she said that the feeling probably wouldn’t come back in my leg but the work we did would help my knee to compensate and it would learn to feel what my foot is not. Things like walking will be easier as my knee learns to recognise the impact when walking etc. I just couldn’t help but cry.

My leg has been the cause for me crying more in the recent weeks than anything else has. I was speaking to my mum briefly about stuff and she has been helping me apply for ESA too. I almost ended up in tears and after she left I ended up in a lot of tears. For years I have dealt with my asthma and it has upset me but not left me in the turmoil that my leg has. I know more about asthma that most of the professionals do, what I don’t know about asthma is probably not worth knowing, but my leg I have no clue what is going on and no one can give me an answer about what is wrong with it or how long it will go on for. All anyone has said is that the feeling most likely will not come back as there has been no improvement in sensation so far.

I am trying to stay positive about it and also trying to learn to adapt and be as independent as possible. I don’t want to sit and wait for this one day to suddenly get better which would be great but if it doesn’t get better then at least I am able to be ok for myself and make the most out of my physio sessions.

What I wish I could do is to let my emotions out more. I felt a sense of relief after crying and letting it all out. I always thought this blog was my way of coping and making sense of everything that goes on with my health. I have some posts which I write that are kept secret which I want to be just for me so I can get it out but not for the public. The posts are not really constructive and more a jumble of my thoughts- or a more jumbled version of my thoughts.

Particularly in the UK we like to have that stiff upper lip and not show our emotions but this is not good for us. We need to show emotion otherwise we eat ourself up inside. It is not weakness so shed a tear. Particularly when we are living with chronic illness that in turn causes other conditions it is hard work. Life without illness is hard work, illness just adds to that work and it is work we cant leave in the office. It comes with us everyday, every night there is no relenting.

It is ok to cry wether it is publicly or privately you are not weak for crying. It can be cathartic and actually help unload some of the stress we feel which in turn can potentially mean our conditions can become easier to manage especially if stress if a trigger to cause conditions to flare up.

 

SoulKraft Wellbeing Radio Show 10.07.19

Last night I had a totally new experience. I was a guest on a radio show. I have done radio interviews before but they have never been in a radio studio with the headphones etc on so this was all a bit new and exciting! To listen to the show follow this link

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SoulKraft Wellbeing Radio Show is a weekly show hosted by Lauren on Stirling City Radio. I was put in touch with Lauren via a mutual friend but we were also at the same school. Lauren’s radio show focuses on mental wellbeing and has a sub topic each week focusing in on part of mental wellbeing such as creativity. You can read more about Lauren, her blog and radio show here.

To say I was a bit nervous would be an under statement because I have never been the best with words when speaking about my own health. I can write it and I can speak about the surrounding topics such as asthma research, new asthma medications when giving presentations but the last few times when I have spoken about myself and how my asthma has impacted me I have ended up in tears in front of a whole load of people, so I was hoping I was not going to do that while on the radio. I have also never spoken about my view on mental and physical health. I have written about how a physical health condition has impacted my mental health but never really spoken about it and also not spoken about how I view health as a whole.

It was great to be able to speak to someone who has had such similar views on health but they come from a predominantly mental health condition where my initial diagnosis was a physical which has impacted on my mental health.

Reflecting back and listening to the show has been really cathartic and in a way given me a new lease on life and advocacy. It has made me realise that health is just health wether it is physical or mental. Part of me really feels that all this attention being given to mental health may just be stigmatising it even more now. There is a lot of press given to mental health because it is chronically underfunded but why is it. Mental health conditions just like physical health conditions sometimes cannot be prevented and sometimes can be prevented, all conditions can be treated with pharma input or using other approaches there is no real difference (I get that this is being very generalistic but when you get to the nitty gritty of all conditions they are complex and hard to manage.

I want to try and spend some time promoting the impact that living with a chronic (sorry Lauren) health condition can do to you holistically. I say holistically because that focuses on the whole person not just the one organ or organs that the condition effects.

Thank you again Lauren! If you want to listen to the radio show

 

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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Guest blog post: Why being a Volunteer is Important in healthcare?

And how to keep them happy and feeling valued.

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Hi, My name is Mark Hudson, You probably have no idea who I am, that’s ok I’d be surprised if you did. Olivia and I met in August of 2018 at an ICU steps Edinburgh event, Creativity in ICU recovery, it was my first speaking event. I was nervous as talking about what happened to me in ICU is not easy, it is bearing my soul, several people spoke at me. Note that AT me, an ex ICU consultant who basically telling me about what a patient goes through in recovery, arrogant right? Other spoke at me telling me why they where great, Dr Ramsay introduced herself but was very busy so during the event didn’t have the time to talk (which is fine there was a lot going on). So, who was the first person who actually spoke to me? Who treated me like a person, a person whose view was important? Olivia. I don’t have many friend but I make them fast, with me its all in or all out, I don’t have any middle ground. My health issues and nearly dying in ICU made some things clear to me, life is short and as such you should surround yourself with good people. I chose to surround myself with great people like Olivia.

I have only met Olivia one other time in the real world but I am happy to call her one of my best friends. Why I hear you asking? Because we have fought in the trenches of Critical Illness, we have battled ICU Delirium, we have had to deal with life long health issues and we have both made it through mostly intact. Ok so now to get to the point of the blog, I hear you saying thank god, a bit rude but that ok I forgive you 😉

I was given an opportunity to Volunteer after I completed my ICU rehabilitation clinic I was invited to become the peer support volunteer for the clinic it was a big deal to me as it was an opportunity to pay back for the people who saved my life and help to make those who came after me in ICU’s lives a bit better. A chance to make a real difference in peoples lives, this is the main reason why people volunteer in these types of positions. However, it is very easy to take them for granted, after all they are not paid so they are valued as, less right? Well no because you are being paid to do your job, they are giving up their time and experience. So how do you avoid this pothole, well you do somethings my team did with me, you listen to their input taking it seriously and weighting as equal to the other team members or greater depending on the subject. Also inviting them to any Quality improvement meetings you have and treat them like one of the team as they are not a guest they are very much in your team. Other things like remunerating for their travel is important too as why should they be out of pocket for helping you out.

I have now started doing what I call freelance volunteering inside my health board mainly on Delirium so far. This is where I am brought in to talk say at a conference or training session etc. Now these situations are trickier for the people who are bringing the Volunteers in because unlike my clinic experience, I am not part of the team. However, in this situation I am being brought in as an ‘Expert’ now this can be a problematic area as you are often viewed on as a free resource. No other expert would be looked at in that way, it is as if because you are giving your time up for nothing you lose position you become an almost inferior. This is the worst thing you can do to a volunteer because you will make them feel like a failure and not respected, which will make them much less likely to volunteer with you or anyone else for that matter. So, I hear you asking how to avoid this, its trickier, because there is not usually a pre-existing relationship it can be tricky. Here is my ‘guide’: if you are in a faraway or difficult to get to part of a building meet them at the front door; if there are other speakers or ‘important’ team members introduce them and say they have came to help you do x or have Volunteered to show us X it shows they are important; Introduce them before they speak and thank them when they are done in front of the group it shows their value to the group; and at very very least offer to pay any travel expenses because why should they pay to help you.

Ok so the serious stuff aside it boils down to is remember they are a human being put yourself in their shoes and see how you would want to be treated. Remember they owe you nothing, they do not need to help you, that is sometimes forgot. They do not need to give you their time, insights, wisdom or bear their soul to you. They are giving you a gift, its not yours to take or demand its theirs to give so remember that when you are working with volunteers.

Mark also writes his own blog which is well worth a read. Mark is also an avid poet writing some fantastic poems. I have been very fortunate and Mark has penned a few poems for me which I will post for others to enjoy too!!

Mark’s blog is: https://autoimmunedisorderjourney.blogspot.com

Twitter: @MarkThomHudson

The NHS Long Term Plan

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No one can have missed the news recently about the NHS Long Term Plan for NHS England. Even those of us not living in England can’t miss it!!! I know I live in Scotland so it does not impact me directly but I am pretty sure the Scottish Government will take on a lot of the plans for the Scottish Health Service that are talked about in the NHS Long Term Plan.

The biggest thing that I have noticed in the news, on social media from news agencies is surrounding smoking and the help that is going to be given to people who smoke that are admitted to hospital. Any time I see anything about the plan this is what I see and it just angers me so much. I know I am not alone either as have spoken to many people who are in a similar position to me with their lungs that are frustrated and angry about it to. For me what it me most was that along with the national news agencies and NHS health boards tweeting about it, my own local health board posted (once again) about how they were going to give smoking cessation help and advice to patients admitted to hospital.

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I know this is a very good step etc and that people who smoke should be offered help to stop however on a daily basis just to get into work I run a gauntlet to try and avoid breathing in any smoke. The NHS made a huge deal about how their sites were to be no smoking sites and that smoking is banned on their sites yet nothing is done to enforce this. They have signs everywhere yet those who smoke just stand by them and light up. Some don’t even wait till they clear the door before they light up. This is not unique to me and the hospital I work in. I regularly see on different forums asthmatics saying they had to go to hospital but just trying to get into the hospital left them in a worse off state than they were when they arrived in the car park etc because of all the smokers they had to pass.

Until you have put up the fight of your life just to get a breath in you cant understand what it is like. It is one thing when you may have been a bit silly and done something stupid which provokes an asthma attack but when you have done nothing other than try and get into work and you end up in intensive care it can leave you feeling really angry and bitter.

What I would love to see and so many would love to see is the smoking ban being enforced or at least a shelter to provide those who smoke a place to go and then leave areas such as the main doors to the hospital as a safe zone. Also when there are the groups of people congregating outside the doors of the hospital- many of whom are patients why are the smoking cessation nurses not down there encouraging them to not smoke or at least smoke in an area which won’t risk killing people.

What is worse is that the main doors to the hospital I work in which are always flanked by people smoking, are over looked by 3 of the four bedded bays in the respiratory ward so during sweltering summer days you cant have the window open because you end up with a room full of seconds hand smoke.

I am not alone in how I feel and what I think which is why I am writing this. I am at a total loss as to what to do because everywhere I try and get the issue addressed cant give me any answers. Is it going to take someone dying from an asthma attack as a direct consequence of people smoking outside hospital doors for action to be taken?? I have got in touch with ASH, Unison, local MP none of whom could give me an answer or willing to take action.

My working hours are 9am to 3:15pm, I have a blue badge due to the severity of my asthma so can park close to the hospital however I have had to start arriving earlier and earlier so I can have the time to wait till the doors are clear of people smoking and then take my chance. This time is different each day but it shouldn’t need to be done. There is then the reverse when it comes to leaving work however I tend to end up just trying to get out and get to my car, once in the safety of my car I can have some nebulisers to alleviate the effects the smoke has had on my lungs. I just wish those who smoke understood what they were doing to others.

It is so hard to see so many struggle. I have read how people feel like turning back and missing their hospital clinic appointments because of people smoking at the doors and the risk this poses to their health. This should never be a choice that someone has to make.

It would be great if others could share this and try and get change to happen.

If the NHS are committed to help people stop smoking, then they need to be down there with those who are smoking not up in offices making plans. Smoke is not just effecting those smoking but also others around them and not only those with lung disease either.

Please lets try and get things changed. I don’t want to risk losing my job (which could be a real possibility) because I have once again ended up in the intensive care unit as a result of people smoking where they should not be smoking.

#stopsmokingonNHSsites