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!!!

 

 

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.

Its ok to cry

I hate crying. In fact Im not sure anyone would say they like to cry. It is an emotion relating to sadness and distress so one we never want to experience if possible (There is the odd occasion that laughter renders us crying in which case it’s not so bad).

I am not much of a crier and it takes a lot to make me cry. Giving up my job really left me pretty low but I didnt ever cry about it. I was upset and close to tears but never actually cried. I am the same in clinic appointments I get upset but never shed a tear.

The few last weeks I have found really tough. I have cried a lot which is when I realised just how tough I was finding dealing with my health just now. The first time I cried was with my physio when she said that the feeling probably wouldn’t come back in my leg but the work we did would help my knee to compensate and it would learn to feel what my foot is not. Things like walking will be easier as my knee learns to recognise the impact when walking etc. I just couldn’t help but cry.

My leg has been the cause for me crying more in the recent weeks than anything else has. I was speaking to my mum briefly about stuff and she has been helping me apply for ESA too. I almost ended up in tears and after she left I ended up in a lot of tears. For years I have dealt with my asthma and it has upset me but not left me in the turmoil that my leg has. I know more about asthma that most of the professionals do, what I don’t know about asthma is probably not worth knowing, but my leg I have no clue what is going on and no one can give me an answer about what is wrong with it or how long it will go on for. All anyone has said is that the feeling most likely will not come back as there has been no improvement in sensation so far.

I am trying to stay positive about it and also trying to learn to adapt and be as independent as possible. I don’t want to sit and wait for this one day to suddenly get better which would be great but if it doesn’t get better then at least I am able to be ok for myself and make the most out of my physio sessions.

What I wish I could do is to let my emotions out more. I felt a sense of relief after crying and letting it all out. I always thought this blog was my way of coping and making sense of everything that goes on with my health. I have some posts which I write that are kept secret which I want to be just for me so I can get it out but not for the public. The posts are not really constructive and more a jumble of my thoughts- or a more jumbled version of my thoughts.

Particularly in the UK we like to have that stiff upper lip and not show our emotions but this is not good for us. We need to show emotion otherwise we eat ourself up inside. It is not weakness so shed a tear. Particularly when we are living with chronic illness that in turn causes other conditions it is hard work. Life without illness is hard work, illness just adds to that work and it is work we cant leave in the office. It comes with us everyday, every night there is no relenting.

It is ok to cry wether it is publicly or privately you are not weak for crying. It can be cathartic and actually help unload some of the stress we feel which in turn can potentially mean our conditions can become easier to manage especially if stress if a trigger to cause conditions to flare up.

 

Why does a journalist want to do a feature on his sister with asthma??

Recently I shared a link to a story my brother wrote. It was about me living my life with severe asthma.  He is a journalist with the Daily Record and is doing some pieces on asthma, smoking on hospital sites (one of my hobby horses) and some other things.

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(I apparently don’t have many photos of us together so this will have to do. Taking me off the ward when in hospital. I was lucky to get back to the ward alive with his driving of the hospital wheelchair!!)

I wanted to ask him a few questions (it turned out to literally be a few) on why he wanted to do a piece about me and my story of living with severe asthma. I am really proud of him for doing this especially as asthma is destroying so many peoples lives yet asthma is dismissed and not thought to be that serious by the majority of the population.

Below is his answers to my questions!

Why did you want to do the piece?

Without a doubt it was from seeing what you have gone through over the years, particularly in the last few when I have been around it more. It’s really not a well-understood condition from a layman’s point of view. People just think it’s ‘a bad cough’ or getting out of breathe when you play sport, but nobody sees the sinister way it can affect someone’s life.

Health stories are such a massive and important part of the media, particularly in how it can help activism and help push the conversation surrounding policy. I don’t think asthma gets the coverage it deserves. Talking to people who face a daily struggle with illness and putting their journeys in the public eye helps others open up and deal with their own conditions. But asthma suffers don’t have that voice like other illnesses like cancer or MS. Obviously as your annoying wee brother I have seen you at your best and worst with asthma, and it’s so inspiring. I wanted your journey to help others above all else.

On the other hand, it was so important to include the work you do behind the scenes for Asthma UK and other charities. Covering topics like correct techniques for taking medication and attitudes towards asthma help stimulate conversation, even on a day-to-day basis, from a light natter over Sunday lunch to discussions between health professionals.

How did covering the story affect your understanding of asthma?

Without a shadow of a doubt the amount of medication someone with severe asthma – and knock-on conditions – must take on a daily basis. I knew your asthma was bad through years of hospital visits and attacks, as well as using it to my advantage to beat you at golf (still not sorry). That hit home in a big way when you were placed on a ventilator recently – it was actually what prompted me to want to do the story. So I guess you could say that I knew how bad it could get before doing the piece, but only just before I sat down to write it.

But the medication routine was what really hit me hard. The sheer volume of treatments you have to take every single day was staggering, and shocked many of my colleagues. Knowing how you still get on with your life, throw yourself into activism and sport wherever you can, makes that even more staggering. To be taking 38 treatments daily at the age of 33 is mind blowing. I think getting that across to people really helps them to take it just as seriously as other, more talked about conditions