Another chapter ending in my life

“the uniform I love is the uniform that saves me and is killing me” has been a statement I have written many times over the years.

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I posted on social media a few weeks ago now to say that I would not be coming back to my job as a community dialysis nurse. I would be ending my career as a nurse come April 2020.

It has not been a decision I have taken lightly. I have spoken to a number of different people including my family, respiratory team and my bosses at work. Last January I was not in a good place physically or mentally. I had come off the back of a really bad run of asthma attacks a rough hospital admission and for the first time ever I did not feel able to go back to work. Fast forward a year and rather my health being better I am in a worse situation, my health is at an all time low and it is hard to cope with my daily life and everyday tasks. I am relying on my mum more and more so there is no way I could continue working.

I am beyond devastated at having to give up nursing. I fell into nursing after having to give up a career in sport. I was determined that I would do all I could to get myself through university and qualify as a nurse. It was hard but I did it with the support of my tutors and of course my consultant. Soon after qualifying I got my dream job working in the renal unit which is where I stayed. I was so fortunate to have really understanding bosses who were so accommodating and made changes to help me and enable me to continue doing the job I love. I pushed on so much and often worked when potentially I should not have but it is because I genuinely loved my job. I loved the patient interaction, trying to help patients manage their condition and get the most out of their life.

Closing this chapter does not mean it is the end of nursing forever. Nursing is a career I will always be able to come back to when my health is better. For now it is just on pause.

A lot of people have been asking what I am going to do and will I manage ok without having an income. These are things that I will talk about in another post. Im am so gutted but it is for the best. My patients, colleagues and family were worrying about me when I was working and if I was ok. They were seeing that I was having no quality of life and I was living to work and that was it.

Nursing may have been put on hold just now but I am not going to give up on my dreams.

 

You can disagree with your Dr, its called self advocating.

Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life.

How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider.

In the UK when it comes to healthcare traditionally we are not very good at speaking up for ourselves. We often go with what the Dr or Nurse says because they have done the training and what they know is best. This is a very antiquated view now I think yet we still want to please our Dr’s so will do what they say and take what the prescribe. We often think if we don’t do this we are seen as a difficult patient and no one wants to be a difficult patient do they!

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Speaking up for yourself can be daunting, I remember thinking I can’t question a Dr, they went to medical school for 6 years and have done countless more years honing their skills in whatever speciality they chose so who am I to question them. I only live with the condition I don’t (or didnt) know the physiology behind my diseases or the best treatments for them. This is what the Dr’s know.

I wish 14 years ago I knew what I know now. I have written about this before but 14 years ago my Drs had me on prednisilone (which frustratingly I am still on) and kept weaning it down as they did not want me on it long term. I didnt understand the long term side effects of prednisilone at the time but was getting fed up of feeling good while on higher doses of pred but then start feeling awful as the dose reduced and came off it. It was like a constant rollercoaster. My answer to this was just not to take the pred. I didnt feel good not taking it but at least I was not feeling great to then have that feeling taken away and I would go back to my life being put on hold. I found that I preferred to know where I was with my lungs and adapt to life where my lungs were not that great. This did not work out well for me on several fronts:

  • My health was awful, I couldn’t do anything, I was missing out on life, friends, sport, uni.
  • My mental health was at an all time low because I couldn’t do anything with my friends and just be a normal student, but I could not cope with being able to do things with my friends while on a high dose of pred for it to then be taken away again.
  • I was lying to my medical team, how could they trust me if I was not doing what they wanted me to do.

It all changed when I managed to get a chest infection and put off going to the Dr. I ended up in intensive care really poorly. I was questioned by my consultant about why I waited a long time to get seen and go to hospital and why did I not put up my prednisilone according to my care plan when my peak flow dropped.

It was then that I opened up to the Dr and said what I had been doing and why. I explained that I didnt like knowing that while on a high dose I would feel well and be able to do stuff and then the dose would be reduced and I would not be able to things because of my chest so would prefer to just not know what it was like as it was a false sense of reality that was just then taken away.

Once I recovered from that hospital admission I had a meeting with my consultant and asthma nurse to have a frank discussion about my asthma, asthma care, medication regime and care plan. This was the first time I felt that it was ok to speak up and say to them what was important to me in life and what I wanted to be able to do etc. It was great as we were able to work out a lot of things and while I had to make compromises as it is not possible to do everything I wanted to be able to do but now my consultant really understood me as a person and our working relationship grew because I was able to be honest. I was also able to bring suggestions to him about new medications I had heard about. It became a 2 way conversation which I have now always made sure I have with all my Drs and nurses involved in my care.

It can be daunting at first to advocate for yourself but I can assure you it is the best thing you can do. Drs know conditions and medications but they don’t know you and your life unless you speak to them about it. We didnt choose to develop chronic health conditions but we do choose the life we want to lead and this includes how we manage our health, what medications we are prepared to tolerate and what we are not. Some side effects may be ok for some to put up with but not others depending on life situations. For me just now I don’t mind my dose of prednisilone changing quite a lot because I am not working (I find that when the dose changes my insomnia is so much worse) but if I was working then I would speak to my Dr about not having the dose fluctuate so often so I could try and manage my insomnia better.

Self advocating is not about arguing to get your own way but it is allowing your medical team to work with you to get the best management plan for your condition and your life. If you as a patient are involved in the decisions about your care and agree with them then it is highly likely you will be a more compliant patient with medication compared to a patient being told what to do and what to take when who is less likely to comply because it is not what they want to do or it does not fit in with their life. No one likes being told what to do but if we are involved we are more likely to follow instruction.

It is important to remember that while self advocating is good, not everyone feels comfortable doing it and would prefer to just do as the medical professionals say. That is fine too.

I am so glad that I was able to learn that my voice as a patient is just as important. I do have knowledge, I am an expert patient in my own health and my conditions. I am allowed to bring my thoughts to the table when Im in appointments as I need to try and get the best management for my health possible.

I will leave it here but I would say self advocating does not make you a difficult patient, it makes you a patient that cares about their health. This is why I self advocate and why I am also a wider health advocate and will advocate for various health conditions like severe asthma and allergies.

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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