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.

 

Corona Virus what does it mean for severe asthma?

Corona virus, COVID-19 or as I like to refer to it as “the virus” is the hot topic just now and rightly so especially as the World Health Organisation has just declared it to be a pandemic.

I have not posted anything on facebook, instagram, twitter or my blog about the virus because everywhere is saturated and there is a lot of different information about what to do and what is best. The only thing that is consistent is that hand washing is essential and that for the hand washing to be effective it must be 20 seconds minimum. There has been some fantastic stuff developed around songs that you can sing while washing your hands. This is a favourite: Bohemian Rhapsody (it is only half a routine so DO NOT use this to wash your hands)

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What does the virus mean for someone like me?

It is a very serious situation. The effect for me could be devastating. A basic chest infection is horrific and puts me in intensive care and that is a condition that has a treatment. This is a new virus that has no vaccine and no treatment. Should you get the virus the medics can support you and support the area of your body that is failing but otherwise you just have to fight it yourself. When you already fight each day to try and stay well this is an added extra that your body really does not need.

There are mixed messages going about for people with respiratory conditions. The issue with asthma is that it is so varied. For someone with mild controlled asthma the virus might not be that big an issue but I am immunocompromised due to long term oral steroids at fairly high doses and I pick up everything.

To be honest I am terrified. The last hospital admission was really hard and the recovery has been super hard. I have had to invest so much time and energy to get myself back on my feet and the thought of potentially having to do this again put the fear in me let alone to do that recovery plus having COVID-19 on top of it.

What steps am I taking to try and keep myself well?

I am just trying to be sensible but have taken a range of measures to try and protect myself apart from hand washing etc.

  • Withdrawn from speaking events including EyeforPharma in Barcelona, Asthma UK Centre for Applied Research Annual Scientific Meeting and various others. Both of which I am gutted about as was really looking forward to them.
  • Withdrawn from giving a lecture to nursing students at Edin Uni on Professionalism
  • Stopping coaching lacrosse in school
  • Have not been accepting invitation to attend events that are hospital based and any events that has been scheduled I have asked to call in remotely if possible especially if there is a large number of people attending
  • I have done all my shopping and meal prep so I don’t need to go to any supermarkets. i won’t have fresh fruit and veg but I have frozen fruit and veg so won’t miss out totally.
  • Finally the biggest one for me is that I am taking myself out of the city for a few weeks or for as long as needed. I am heading up north to my parents place which is in a small village away from any cities and in the countryside. This will minimise my contact with people and hopefully minimise my risk of catching the virus. I am concerned about getting ill when up north but it is safer to be away than staying in the city.

Its tough to know what to do for the best. With advice changing on a daily if not hourly basis everyone is in a state of flux constantly. We seem to have gone from panic buying toilet roll to panic buying everything that you would keep in a store cupboard.

One other thing I have been very conscious of and I have not mentioned is being in touch with your care team. I am taking the advice primarily from my respiratory consultant but then also my asthma nurse and GP as well. I need to consider what they suggest and listen to what they say over the next coming months more so than ever.

For anyone else who is in a situation with their health like I am I know it is a really difficult time. I am fortunate that I don’t have work to juggle as well as that would just be a whole new ball game. I think if I did still have a job I would be speaking to my managers and explaining my situation. On the whole from others who I have spoken to who have health conditions and work their bosses have been pretty accommodating and supportive. Oddly the thing I have been hearing most is that they wish their bosses or workmates would stop going on about how they have to be careful and or how they need to be aware of the news etc because of their situations and being immunocompromised etc. Many know they are just doing it because they care but even Ia have been getting irritated with people telling me to watch out and I don’t work just now and don’t see a huge number of people right now!!

For now we just need to keep up to date with the NHS advice and hope that things do not escalate.

I will continue to prepare for the worst and hope for the best as much as you can with an unknown situation.

Is severe asthma different to asthma?

In my last blog post I mentioned how I met some other people with severe asthma at a BLF-AUK event where we had a conversation about asthma and severe asthma.

It may have the same mechanisms in that it is a condition where the airways become inflamed and irritated causing difficulty breathing but here ends the similarities. The way it displays itself is different. The way it is managed is different. The way it impacts your life is different. There are too many differences to name them all so this is why we came to the conclusion that it needs a different name.

When someone hears  severe asthma they think its that common everyday condition that every second person has. The part they have not heard is the “severe” that went in front of the asthma which makes it very different, but because asthma is so common people are very relaxed so don’t take it too seriously or act urgently when dealing with it. This leads us to become so frustrated. I can think of so many times where I could potentially have not needed to go to ICU if the Dr I saw at the front door when arriving in A&E took my severe asthma for what it is and not treat it just like asthma.

One of the challenges that people with the condition severe asthma face is that so many in the medical profession refer to those with asthma that is not in control as having severe asthma or brittle asthma when they actually don’t. There are so many terms floating around to describe asthma that is not controlled for example

  • brittle asthma
  • severe asthma
  • difficult severe asthma
  • difficult asthma
  • severe brittle asthma

That is just a few. The issue arises is that some of these terms are used incorrectly and we have GP’s or nurses in the GP surgery telling someone with asthma that is not in control that they have brittle asthma when they don’t. They just don’t have their asthma in control at that moment and need some medication tweaks.

The types of asthma such as brittle asthma can only be diagnosed by a specialist asthma consultant at a specialist hospital. Not even asthma consultant at local hospitals can diagnose it as there is a raft of specialist testing and multi disciplinary input to ensure that everything is ruled out before you are diagnosed with this very rare type of asthma like severe asthma or type 1 or type 2 brittle asthma.

This is why I and others have been thinking that perhaps these extremely rare forms of asthma need a different name that perhaps does not even have the term asthma in its name to save us as patients from not being treated correctly. Maybe just then we won’t suffer so much when in hospital.

Another big issue for some with severe asthma is that we can look ok one minute and the next we are fighting for our life or we look ok but actually we are working incredibly hard to breathe but don’t want people to know. You cant see severe asthma unless you are having an attack which makes it so hard for people to understand just how debilitating it can be. How every aspect of your life is dictated by your condition, that even taking every medication that is there for asthma it is still not enough to give you a quality of life. It is hard to think that despite taking 30 different medications each day I still don’t have control of my health or my breathing to where I would like it.

I wish my lung condition could be covered by the term asthma but severe asthma is far more complex to manage, treat, control, and understand. No 2 people with severe asthma are the same which makes the condition so much more complex to diagnose and manage. This often leads to very frustrated patients and frustrated healthcare practitioners because despite everyones best efforts life is not good, hospital admissions are just part of life, even ICU becomes part of life which should never be the case.

This is why I think severe asthma needs to be totally separated from asthma and doing this could be achieved by changing its name to stop people from being complacent when treating you in an emergency situation.

I hate living with severe asthma and hate that it is so poorly understood. Maybe one day there will be a huge break through and suddenly all of us whose life is dictated by their severe asthma is no longer like that. Until then I will continue to try and raise awareness of what it is like and just how serious a condition it is.

BLF-AUK Respiratory Action Plan Meeting

I was recently at the first event since the partnership of  Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this event as I didnt know anyone however as soon as I walked into the room I spotted a familiar face Dave from Chest Heart and Stroke Scotland who had attended a PPI event I was teaching at. As more people arrived I then saw Toni (a fellow patient) who I got to attend the Garden Party with which was good too but actually by the end of day I was able to speak easily to so many people and have come away part of a whats app group.

The table I was on turned out to be one full of severe asthmatics (not done on purpose all by chance). As we got talking it was amazing speaking to others who have had the exact same experiences as I have and the way you feel as well. I think the biggest thing for me was that you would not be able to tell that any of us were seriously unwell and that 2 of us have had far too many intensive care stays to count.

One thing that did come up several times in conversation was around the term severe asthma and what it means. We all came to the conclusion that severe asthma is almost a totally different condition than asthma is but this is for another blog post.

The main point of the meeting was to discuss certain points of the Respiratory Care Action Plan which has been drafted by the Scottish Government however they have one huge fundamental flaw. They did NOT consult with those who have or are affected by respiratory conditions, so the BLF-AUK held a meeting to discuss key points which need patient in put on. In the room there was a mix of people with different respiratory conditions.

One part of the meeting that I found frustrating was that it became a bit of a platform for people to spout their complaints about their GP and how they never get to see their GP or if they want to see their GP they have to wait. This is just the way it is now but moaning at events like this is not going to get anything changed. The GP system is not ideal but there are so many who are not using the GP correctly like with A&E so that others miss out and suffer as a result but a consultation on a action plan is not the time to complain.

Asthma I think and I may be wrong is unique amount respiratory conditions because unlike other conditions which mainly affect the older generation asthma can affect anyone young or old. In the room everyone was much older than those with asthma. The other thing that made it unique is that unlike COPD asthma is not really a progressive disease. It goes through phases of being controlled and uncontrolled but generally won’t continue to get worse as you get older limiting your ability to function. So the needs of those with asthma are very different to those with a constrictive airways disease compared to a revisable airways disease. I think those with asthma in the room were able to speak up and give a good balanced argument for our opinions and why us as asthmatics think as we do.

I did get very frustrated when asking a few questions to be interrupted by those with COPD who clearly has no understanding of any other condition outside their own so would butt in with their opinion and how I was wrong. The one that got me really riled up was discussing spirometry. I asked what they meant by spirometry to the facilitator as it was a broad term and encompasses a number of different tests. The context of this question was on the background of spirometry being used in primary care. This person jumped in and would not let me explain what I meant  and told me that spirometry is blowing into the machine when you sit in the glass box. I was wanting to know if they meant basic lung function by doing speak flow, or FEV1 or more advanced lung function tests given that the context is primary care. I was just really annoyed that some people were not given the chance to ask their questions or finish asking their questions without people butting in. The whole purpose of consultations and being involved patients and the public is to listen to each other and accept each others views wether you agree with them or not particularly when it comes to a variety of different conditions especially when we are all experts of our OWN condition but not in other peoples conditions.

The whole day was really good and I really hope the BLF-AUK got a lot of helpful information to take back to the government about their action plan and hopefully make some changes now that patients have been consulted. I look forward to seeing the result and to see the finished Respiratory Action Plan. If anyone is interested in giving their own feedback on the action plan they can do that here .

 

 

What do you do when it all gets a little too much?

Ask for help.

Living with a long term health condition comes with many challenges especially when it is a condition that comes with unpredictability and triggers out with your own control. The challenge of trying to live a normal life is tiring and it can feel like a full time job just trying to stay well.

Recently I have hit that breaking point of what else can possibly go wrong with me. Asthma has ravaged my body, I am not just meaning the side effects from medication but the actual asthma and having attacks its self has also left its mark and continues leaving its mark from poor vascular access which has left me with a leg that doesn’t work properly, the mental toll on attacks and being in and out of critical care to most recently finding out that I have either had a hypoxic stroke during an attack or the other option is a lesion on my occipital lobe on my brain. An MRI scan is pending and will confirm but I have had a battery of tests to work out what it is. I am plugging for the stroke option as then at least it has happened and I have had no real adverse effects from it (but fingers crossed it is nothing at all- this would be super).

For the first time I have noticed the impact my poor health is having on just daily living. I recently went to the wrong out patient appointment in the wrong hospital, I totally forgot another appointment and then I cant remember if I have taken my drugs or not. I can guarantee some of the drugs I have taken because they are in my weekly box I get made up from the pharmacy. My brain just feels like it has been put in a blender, put on full and then poured back out. My leg then causes me to have multiple falls and this causes other injuries too!

This is not the life of a 34 year old that just had asthma!!!

I told my GP this today. Well she kind of guessed it as I tried to tell her about the eye hospital I just broke down. I could not help it but the news at eye hospital was the final straw. The year was meant to be focusing on getting my health back on track, getting control of my asthma so I can return to working in the hospital but now my body is in a worse state than it was when I stopped in Feb last year. At least last year I could walk without the need for a splint and a walking stick and could drive out-with the city!

So what to do from here?

My GP is really great and I am really lucky to have her. She gave me details for a new app that is out called Feeling Good. It is a program of tracks you listen to over a 12 week period which I think are similar to mindfulness. I will find out! I think once I complete the course I will write up a blog post for it. Anyone can get the app but some stuff has to be paid for unless you get a code from your GP surgery.

I like to try and keep myself busy as well. I take Ghillie out for a walk every morning come rain wind or shine I head out. This is really good as gets me moving, blows the cobwebs away and exercise releases endorphins so you get that little bit of positivity from it. Also I love seeing Ghillie running around having fun with the other dogs and I have made a few dog walking friends too- everyone is a creature of habit wether we think we are or not.

I need to remember that whatever is going on I am not being affected by it. Apart from some loss of my peripheral vision I have no other issues. I do need to acknowledge that my body is not ok but I have a lot of positives going on and events coming up that I am speaking which I am really looking forward to.

All these situations have given me some more drive to continue with my advocacy work as asthma is still so under recognised and not thought of as a disease that can be that bad. Asthma right now is destroying my body and I don’t want it to do the same to others.

One of the more unusual side effects of prednisilone

or at least we think it is. Otherwise it is just my body being weirder then it already is.

After over a decade of being on oral steroids I thought I had come across most of the side effects. I have not experienced all of them but have heard of them or at least I thought I had.

Prednisilone suppresses your immune system making you susceptible to anything and everything that is going. One of the big ones we get warned about is chicken pox and shingles. If we are ever in contact with someone who has them we need to get in touch with our medical team. Over the years I have had to do this a few times and received treatment to protect myself from getting either virus too. The treatment is not fun. It is injections of varicella zoster immunoglobulins which is essentially 10mls roughly of a vaseline type substance into your muscles. Then some acclovir as well if needed. Each time i also get a blood test to see if I have any immunity to either virus. My blood tests always come up negative meaning I have no antibodies to it. I have also had the shingles vaccine which is the odd part. Despite having the immunoglobulins and the vaccine I still have no anti bodies when I should.

I get questioned so often if I am sure that I have had chicken pox (my parents assure me I have my Drs on the other hand say that because my bloods say I havnt!!) then I also get the question if I actually had the vaccination to it. Sometimes I think people must think I am bizarre but it is my body just being odd and I do think it is due to the prednisilone. It does things to your body that you would never think a tiny wee white pill (or 8) could do. The benefits the drug has is that it keeps me alive but the side effects are unreal.

When studying for my nursing we all had to have the Hepatitis B vaccine which is a course of injections given over a period of time with a blood test to see if you have taken up the vaccine and then depending on that blood test a repeat course of the vaccine or a booster dose. Well after the first course and the blood test I was once again being questioned if I did actually have the injections- of course they knew I had the injections because the stickers off each syringe were in my notes but my blood test results were as though I had never received any injection. So I had a repeat course and another blood test. The result of that blood test was exactly the same as the first time so we decided we would leave it there, when I say exactly the same I mean 0.

After my recent experience with chicken pox and shingles I was thinking back. I ended up with flu after having the flu vaccine I think it was when it was swine flu (mainly coz I remember my mum visiting me in ICU dressed up in the mask, gown, gloves etc). All of these things have happened when I have been on long term oral prednisilone. I am not sure what my vaccine up take was like as a kid because you don’t really test to check a child has had a response to a vaccine, you just assume they do because they got the injection. I do want to speak to someone when I get the chance to ask about this because I am concerned that my body cannot fight like it used to, I just don’t have the physical strength so I really don’t want to be picking up something that I was immunised against as a child. I am hoping that these recent vaccines have not worked because of the prednisilone and not because of any other autoimmune thing that my body has.

I would be interested to hear from anyone that has had similar experience to me with vaccines and no uptake to them.

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.