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.

Did you know severe asthma is way more than only severe asthma??

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How did I end up with 6 other conditions plus just from one medication I take for severe asthma. The scary thing is I am not alone.

This word cloud represents all the conditions a small selection of people have as a result of severe asthma. I asked a support group on social media as I am becoming more and more aware of my growing list of conditions. I started off with only asthma and now have: GERD, Osteoporosis, Adrenal Insufficiency, Steroid induced Diabetes, Optic Nerve Neuritis with peripheral vision loss, chronic pain due to lung adherence to chest wall, depression, anaphylaxis, steroid induced myopathy, and this is just what has been diagnosed there are a host of other side effects as well which are a collection of symptoms rather than conditions.

I know my asthma is on the severe end of the spectrum and this type of asthma is very rare but it is shocking that for 33 I have all these conditions all as a result of having asthma and the medication required to control it.

I asked a group of 30 different people of varying ages and almost all of them had at least 4 other conditions that they did not have before they ended up with severe asthma.

I think this just highlights the chronic misunderstanding asthma has. We rely on medications that ravage our bodies to help our lungs. If we did not take these medications many of us would be dead however with the medication we are facing life shortening conditions.

How do we change this? How can we prevent severe asthma causing all these other conditions. You see advances being made in other chronic conditions where new medications are coming out that are life changing and do not come with side effects that just multiply not only your condition list but also your medication regime.

It is a side of asthma that no one ever knows or sees. I am sure the list of conditions I gathered is not all of them and if I asked a wider group of people there would be even more conditions in the word cloud.

Hopefully by sharing this and highlighting this insight it will educate even just one person as to how much severe asthma can destroy a life.

Severe asthma does not end up as only asthma there is a whole lot more that goes along with it too.

Making tough decisions

I was so happy and excited when my Mum said we were going to be going skiing in January. (I have not skied in over 6 years now. Once my life, I ski raced, I did race training and was on the slopes whenever I could. I moved to Canada to pursue my dream career). I forgot all about my leg and the small issue I have with walking. I was so excited at the prospect of getting back on the snow back doing what I love.

Then it hit me.

I have a leg that doesn’t work properly. How the hell am I going to be able to ski?

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(last time skiing in Les Saisies having the time of my life)

Being me I was determined my leg was not going to stop me. I went straight onto the internet and was looking up the Ecole de Ski Francais to find out about para skiing. Still excited about the prospect of being on snow again.

Then first frost hits and I find the icy conditions a major challenge with my leg. Walking is even harder than it previously was. I had a few bad falls which mostly bruised my ego as I felt so embarrassed being a young person falling over doing the simple task of walking. Combined with this I had a bad chest infection which hit me hard mainly mentally rather than physically.

It hit me mentally as it brought back memories of that last bad attack and how hard it was on me and my family. I started to have all of these what if scenarios. What if….

  • I have a bad attack out in France and I end up in the same state again.
  • I have a fall skiing and it causes me a chest injury compromising my breathing
  • I have a fall skiing or someone skies into me and I don’t realise my leg is badly damaged
  • I get unwell out there
  • I get stuck going into the village and cant get myself back
  • I end up hating skiing because I cant do what I used to as skiing was my life
  • I get jealous of all the others out skiing all the runs I should be skiing but Im not because I am having to rely on other people to get me about

I just had all these what ifs. Some of them really trivial things and some of them more serious.

It took me a long time but I decided I really cannot risk going out to France in the state my body is in right now. I am not going to be going out with my family and instead staying here at home.

Im not sure what had hit me harder the fact that I am not going away with my family or that I have myself accepted that I cant do something and have backed down. I normally always try and find a way around my limitations find a different way of doing things or through pure stubbornness just get on with things. I feel weaker now. I feel like I don’t have the energy to fight myself to find those routes I used to. It scares me that I am in this position now.

I am going away up north for Christmas looking forward to getting away and recharging, taking stock of everything and making a plan for the future as life really has changed a lot.

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(Skiing with my Uncle Rob in the back bowls of Whistler. Enjoying life. This was the last time I skied. It was about 6 years ago).

Neurophysiotherapy

If you asked me 4 months ago if I would be under neurology I would have laughed. Through my illness and all my sports I have never needed any neurology input or intensive physio input like I am getting just now.

This physio is so tough and really hard work. Physio previously has been hard work particularly when coming back from injury in sport. There would be a lot of hours put in doing exercises to strength the muscles surrounding the injury and then stabilising the injury and building up from that but this is so different.

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(the gym in the neuro physiotherapy department)

I have had a wide variety of injuries over the years requiring physio input and more often than not it is a 8-12 week recovery. Naively I went in to my first physio appointment thinking that it would be 12 weeks max and I would be back to where I was before. It really didnt sink in until the 2nd physio session that I would be in this for the long haul.

The second physio session I just broke down. It was out of frustration. I was given homework to try and stimulate feeling and sensation in my leg using different textures. I was running through what I had to do when I asked when will the feeling come back. That question is like asking how long is a piece of string. There is no answer. It is doubtful that all the feeling will come back or even if any feeling will come back. When I heard this I just broke down. I was already on the edge when I was going over my home work with the physio as I knew I should be able to feel the glove, towel, and velcro on my skin but I couldn’t. I felt so strange because I know what I should be feeling but I just couldn’t feel it. Im young. Im supposed to be able to feel my leg.

I have managed to balance myself out and know that this is not going to be a quick fix but I am also aware that there might not be a fix. My physio sessions focus on what I can do and how I can get back to being as independent as possible. A lot of the work is making my knee and hip more aware of what my leg is doing rather than my foot doing it because well I cant feel my foot!

It is really hard work. Harder work than I ever thought it would be. I mentally need to keep my head in the game and stay focussed no matter how tough it gets I need to get my independence back and being able to walk semi normally!

I am so grateful for the neurology input and neurology physio I am getting as I know others who have waited a lot longer than I have. I am still waiting for various tests on my nerves which will come in due course.