What words describe you?

Hero, warrior, asthmatic, advocate, inspiration, strong are just some of the words I have had people refer to me as recently. While I really appreciate them and am flattered I feel uncomfortable hearing them.

Some adjectives I can learn to adapt to such as advocate but others not so much.

The word health advocate a year ago is something I would never have applied to myself and a term I did not feel comfortable with. Over the last year I have got used to and embrace the term health advocate and will embrace it for years to come as that is what I am and I want to be the best advocate I can be not just for myself, or my condition but for all those with health conditions.

I think the reason I find some of the words so hard to accept is because I don’t want to be thought of as that. I have a chronic health condition that means I have to fight each day. If I didnt then I would be sitting at home doing nothing and that is not in my DNA, but also what life would that be.

Im also lucky this has been my life for so long that actually I cant remember what it feels like to feel well, every day I rely on a cocktail of medications but even that is not enough to make me feel “normal person” well.

I share my story about the ups and downs of living with chronic ill health to try and get more awareness about the disease itself, so others living with the condition know they are not alone and then also to show the real life struggle so that policy may change or new drugs might be developed so no one will have to go through the tough times that I have in the future.

When dealing with a condition that you don’t know when it is going to hit and take you out with an attack you need to make sure you are strong and not just physically but mentally as well. Getting through an asthma attack is as much about physical strength as it is mental strength. This mental strength which I put down to the way I have been raised but also my sporting background has allowed me to not only push through attacks but also push myself so that I get up each day and do something productive no matter how small it is as long as I have achieved something in the day I don’t care.

I am really flattered by some of the words people have associated with me and the way I have dealt with living with ill health. I don’t want to come across as rude or ungrateful as I know everyone is sincere and means it but recently I find it even harder to sink in as a condition I have always been able to beat is finally beating me and dictating my life more than it ever has before so to hear these words are more difficult.

Once I get back on my feet and know what is going on with my life then I will maybe be more accepting of the terms people use to describe the way I face situations.

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.

Getting medication on time.

I am not actually sure what title to give this post.

I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses it can who are fully prepared for life as a staff nurse.

One thing that came up that has been preying on my mind and the more I think about it the more it bothers me. As the group was made up of a range of people age, gender, background, reason for being at the consultation. There were a few people there representing Parkinson’s- either as someone with Parkinson’s, a carer or someone who works for Parkinsons UK.

The issue of medication came up in conversation and it felt like some had a bit of an agenda as they kept going on about how people with Parkinson’s when in hospital must get their medications the right time otherwise their can be negative effects if it is late. This was a statement that was repeated many times stating that the medication often had to be given out with normal drug rounds.

It felt like to me that those with Parkinson’s,their medication was more important than other patients who need medication. I take medication which is prolonged release and has to be taken at specific times which are out with normal drug rounds and must be taken otherwise blood levels drop and this can have a detrimental effect on my breathing and could cause an attack which may or may not end up needing intensive care.

What bothered me so much is that there was no regard for other people and their conditions and the medication that they are on. I know from experience of doing drug rounds it is very difficult to juggle everything but we do our best. Every patient is just as important as the next and every patients medication is just as important to them as all the other patients. If a patient was able I would ask them to remind me to come and give them their medication if it was out with a drug round or if able I would let them self medicate so they would get their medication when it was due. This can not always be done so we as nurses need to remember and we do try. I was thinking as a nurse if I went into a bay of patients and only did one patients drugs and told the others they would get theirs done in time but this patient needed their now. It would make me feel like I was selecting this patient and treating them differently to the others.

What I am trying to get across is that every patient is just as important as the next and everyones medication is just as important to them as the next persons. There are many medications which like the medication for Parkinson’s needs to be given at set times otherwise there is detrimental effects. I really felt like there was no regard for other people and their condition. Parkinsons is an awful condition and I have a good friend who has had Parkinson’s since the age of 8 but getting medication on time is just as important for us as well.

Im not sure if I am saying thins properly and if its making sense but everyone is just as important and medication  being on time is no more important for someone with Parkinson’s than someone with diabetes or asthma for example.

As a patient I advocate for myself. I ask the nurses if I can self medicate that way I remove the anxiety that can develop if I am not able to get medication when I need it. For example if my chest is very wheezy I am able to put a nebuliser on and then let the nurses know, or if my prolonged release theophylline is due I ask the nurses for it or if they are doing a drug round ahead of time I ask if they can leave it out so I can take it when it was time. Nurses try their best and do what they can but we as patients need to advocate for ourselves to make sure we get what we need when we need it but doing it in a way that is not being disruptive and demanding.

I hope I have not come across as disregarding people with Parkinson’s and the importance of their medication as I know it is important but other medications for people are just as important. I always worry when I attend these type of consultations when there is a few who seem to have an agenda or dominate conversation.

I am going to leave this now but would appreciate others thoughts on this post as it has had me thinking a lot.

The Asthma UK and British Lung Foundation Partnership

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Back on 10th December the news hit the headlines that Asthma UK  are to merge with the British Lung Foundation (BLF). It was met online with mixed reviews particularly by fellow asthmatics. I think there was a concern that asthma as a condition might get lost because the BLF covers such a wide range of conditions but this is where the partnership comes in. Asthma UK will still be just that for asthma and the BLF will still very much focus on its conditions. The partnership will mean that some costs can be merged and each charity can release that money approx. £2million each year to go where it matters most- to help us who have lung conditions.

I was a member of Asthma UK in its previous incarnation “The National Asthma Campaign” and was part of the “Junior Asthma Club” (JAC). I remember getting the news that The National Asthma Campaign was to change to Asthma UK and wondering what it would be like. Would the children and young person’s part of AUK be as good as the JAC (bearing in mind to me the perk of the JAC was the balloon, pencil and newsletter you got quarterly as this was pre social media)? Kick Asthma was just as good- if not better, there was a message board and kick asthma residential camps!! When I first heard of the planned partnership I did wonder what this would be mean but have been reassured that it is going to be a good step.

From what I have read so far the following will remain: the nurse helpline, the research programs and the website. The nurse helpline and Whats App service is a huge asset to Asthma UK that really sets them apart from others. I have used the helpline and found the nurses so helpful and reassuring. At first I thought maybe my reason for phoning was stupid but was put at ease and was glad I called and spoke to someone instead of googling!! Things like this will remain.

What benefits other than releasing money will the partnership bring? Due to soaring costs and being a relatively small charity Asthma UK could not sustain running their main office and then satellite offices in Scotland, Wales and Northern Ireland as well as funding the research and support for those with or affected by asthma. It was a hard time hearing that the satellite offices were to close but this new partnership offers the opportunity for bases to be built in Scotland and Wales again through infrastructure already established by the BLF.

It is a really exciting time and I am really pleased to be involved in so many projects with AUK and separately with the BLF too (I joined their patient involvement group quite a while back). Everyone knows someone who has asthma or lung disease yet both charities are chronically under funded. If only we had the same money that Cancer Research UK or the British Heart Foundation has then we might be able to make headway in conquering lung disease but this partnership is a step forward to save some more money that can go back into helping us.

What is going to happen next?? We will need to watch this space but in the mean time I need to prepare and think about what I am going to do for my first week of The Blow It Away Challenges.

 

 

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.

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!!!