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.

What do you do when you have a bad or good travelling experience when you have a disability?

I have been very lucky that despite my asthma I have been able to travel (mainly to attend conferences). I have travelled via a variety of different methods: train, plane and taxis.

Thanks to the hidden disability lanyard I have been very fortunate in the treatment I have received in airports. I have also been able to use it on trains but now that I am walking with a stick I have noticed people come up to me more to offer help or get up from seats and give me theirs.

I decided to write this blog after some time to think as at the time I was angry, humiliated and really not thinking in a constructive manner. I am now thinking about how to change this negative experience I had into a positive one.

In September I went to Madrid to attend the European Respiratory Society Congress. The travel out was spot on. Arriving at the airport I had my sunflower lanyard on and was helped with my bags at check in and offered the use of a wheelchair to get me up and through security. I declined as I knew I would be seated for a large portion of the day so wanted to take the opportunity to get some walking done.

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The one point that most people dread when going through the airport is security. I know I do. Having a hidden and visible disability and wearing my sunflower lanyard I went up to the special assistance gate at security. An officer asked me if I needed some help. I accepted and she helped me take my laptop and then medical supplies and put them in the trays. She then escorted me to the bit where you walk through the scanner. She explained that they needed to put stick through the X-ray but they had a wooden stick for me to use while I got through the scanner myself. Due to my inability to walk without my shoes and splint on, they made other arrangements and swabbed my shoes, provided a chair for me to sit on while they did this and also stayed with me to help me put everything back in my bag and make sure I was ok.

Boarding the plane was the next challenge. All sorts of thoughts were running through my head. Dreading the thought that we might have to go on a bus to get to the plane and then climb up stairs to get into the plane. I was able to ask at the gate what the boarding situation would be. I was then asked to take a seat behind the gate where I was introduced to the crew and then told I would board the plane when the crew went on too.

It was all so seamless and almost had that too good to be true feeling. It was really refreshing to have such good service in what can be quite a stressful time. I have sent a compliment form into the the airport and BA who were the airline I was flying with.

On the way back the airport experience was polar opposite until I reached the gate to board the plane.

Arriving at security I once again had my sunflower lanyard on and went to the special assistance area for security. This is where I can only say I felt humiliated and felt like totally breaking down. No help was offered at all. I did asked for some help but this fell on deaf ears. The area was not particularly busy so I was shocked that my request was turned down. I sorted all my stuff and got my medication and medical devices out my bag and into a tray, pushed them up the line till they went through the X-ray. I then went to walk through the scanner and was greeted by a security officer who spoke good english and told I couldn’t take my stick through or wear my shoes or my splint. I asked if I could wait and they could go through then if I could be given them back so I could walk through. I was told no and then my hands were taken and I was just about dragged through the scanner, almost falling flat on my face. I was tripping over my foot as I cant move it myself and have no feeling below my knee. I was crying inside just wanting the ground to swallow me up, hating myself that as a young person I was being humiliated in such a way. I kept thinking I should be able to walk normally, I shouldn’t be in this situation. Once I had been dragged through the scanner, my hands were dropped and I was left to try and get myself to the trays with my stuff in and get myself sorted.

I managed to get myself sorted without totally breaking down. On the way out of security there was one of those things that has buttons asking me what my experience was like. I obviously pressed the button with the red sad face. A man then came an asked me why I pressed it. I gave a brief description of what happened and the man just nodded me. No offer of apology or anything.

I just pulled myself together and then joined the others I was travelling with, putting the experience behind me so no one would know just how upset I felt inside.

The rest of the travel home was seamless. I travelled home with Easyjet and once again the staff were very helpful. Unfortunately the seat I was in was considered an emergency exit but they found me another seat which was actually a whole row so I could put my leg up.

After all of it I was so glad to get home and back in my own environment.

One thing I have learnt and looking back I would have done things differently. While in security at Madrid airport I would have advocated for myself. I would have stood my ground and made sure my needs were met rather than be humiliated as I was. I wish at the time I had been able to stand up for myself but I was caught by surprise so I guess I was really shocked. You don’t expect it.

In future I will be prepared. I will have a written explanation of why I need the stick, that I cant walk without it or without my splint, and also what my medical conditions are. I will have this all written in the language of where I am going to. I will also use other communication cards in the language of the country I am going to. I want to be prepared and I don’t want to go through this experience again. I also don’t want others to have this experience as it really destroyed me, my confidence in travelling solo with no support has dwindled. I should be able to travel Im a young person who wants to experience life not be humiliated and shamed into not wanting to travel only own again.

If anything can come from this experience it is that I have learnt more to advocate for myself and also use my situation to prevent others having similar experiences.

Returning to work in a fog of smoke.

I have been back at work now on a phased return and it is going fairly well except for one part. When my chest feels tight I do find it a bit of a struggle to get from the car park to the hospital. The staff car park is the furthest out from the hospital and includes crossing the road that circles the hospital. It is not to far only about 400m probably but when your chest is tight it feels like a marathon.

To compound this staff seem incapable of waiting until they are either in their car or off the hospital site before they light up they cigarette and go on their way. I see them walking out the hospital cigarette and lighter in hand before they are even out the building- it is almost like you can see them itching to light it which they do as soon as they are out the building. It appears that they cannot survive without their nicotine that they don’t have a care for who is around them all they are focused on is lighting up and getting their fix not worrying about the effect they have on others as long as their cravings are satisfied.

I guess I am more sensitive to triggers now than I ever was before because of the attacks I have had since the start of the year- they terrified me and still haunt me. My lungs are still twitchy so any trigger will make me feel tight and wheezy. When I was off sick I longed to go back to work to have a purpose to the day and get back to the job I love but how can I do the job I love when getting into work I can only describe as running the gauntlet not knowing what I am going to have to go through just to get from my car and into safety of the hospital. This really hit me yesterday when I had 3 people in front of me smoking as I left the hospital to get to my car. I had to wait outside in the cold until they had moved far enough away that their smoke had dissipated and was no longer a threat. To me smoke is as much of a threat as a dangerous patient if not worse. You can’t call security for help from someone smoking but you can for a dangerous patient. I don’t mean to trivialise a dangerous patient but to me right now smoke is more of a danger to me than anything else. I don’t want an attack triggered- the fear of another asthma attack like I had grips me so hard I can’t shake it off.

I know you can’t go around dictating what people do but what I have huge difficulties with is that the hospital is meant to be a no smoking zone and there are signs everywhere which are just disregarded and no notice is taken of them. Many of the people I see out smoking are nurses. The same caring compassionate profession that I am in yet they really don’t actually care for those around them. There is nothing worse than being a patient and having a nurse come off their break smelling of smoke and you are sitting in a respiratory ward and could quite easily be set off just by the smoke that is lingering in their hair or on their clothes.

I think my issue that I have trouble accepting is that I did not choose to have my lungs like this. I am trying to do all I can to stay well and achieve what I want to do but I see all these people who choose to smoke and are choosing to do damage to their lungs and other peoples lungs. I do remember once I was subject to one persons smoke which caused me to have an asthma attack and go to hospital- the nurse’s smoke that caused the asthma attack was the nurse who ended up looking after me. I found this really hard.

I have rambled a little bit here but I am just so frustrated that by trying to work and get to work I am risking my own health to get inside the building. I have asked to move carpark to one that is closer so that the gauntlet I have to run is shorter and therefore the potential risk is much less but this is yet to happen and Im not sure if it will happen. It is a very small request but it does make me think what is the point of pushing myself to work when those around don’t want to try and help. To put it bluntly if those who smoke think about those around them and perhaps smoke only where they are meant to they would not effect other people, they would reduce the number of people who end up in hospital and therefore reduce their work load making their life easier.

This is a little bit off the deep end but its how I feel.

Work

This is really just a post to get something off my chest. I am getting so irritated by people who say they can’t work because their asthma is too severe. I understand that some can’t work because of this and due to complications of medication such as osteoporosis.

Recently I had someone message me about this and tell me my asthma can’t be as bad as I make out because I still work. Little do they know how hard I fight to continue working. I have a fantastic boss who is really accommodating and I know if I had any other boss I would not still have a job.

The main thing that got to me is the was the huge assumption they made without actually asking me. I have been forced to move consultant to try and get the best care I can for my condition and try and maximise my time out of hospital. I really hated leaving my old consultant as she was great but I was just not managing to get anywhere to extend the length of time I was spending out of hospital between attacks.

I mention about being seen at a tertiary centre for difficult asthma but they had not. IF your asthma is so severe you will do anything to try and get it under control and will travel any length to do this. I don’t think people realise just how debilitating it can be but as debilitating as it can be it can be life changing to the positive. I have done so many things I would never have done had I not had severe asthma. I get frustrated seeing people wallow in self pity all the time about how hard they have it. We all have moments of self pity but using them and working out why you feel down can make changes and help understand your condition more.

Stay positive to stay strong.