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.

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

IMG_6137

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.

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.

 

Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!

To my new family and my tribe #HealtheVoices19

Wow where do I start. It takes a lot for me to be left speechless but I am unable to put into words the emotion and feelings from this past weekend. It sounds a bit cringe to say but it has been truly life changing.

I have made so many new friends who I know will be friends for life.

IMG_1192

To all my new friends from HealtheVoices you all have no idea how much I have appreciated this weekend. The main reason for why it was such a big deal was in November I had a near fatal asthma attack. What was different about this asthma attack was that the asthma consultants were basically there right from the start of the attack. Then the ICU consultant told me if we didn’t turn the cornerstone we would be running out of options and I really needed to turn the corner ASAP. Thankfully I did turn the corner but the attack left me traumatised and I still am living in fear from it. I fear I may not be able to fight the next attack, I fear who will be with me if I have another attack and will they be able to cope. I was also terrified that I would not manage the flight. I know my family were really worried about me coming over on my own but I had to do it for me. I needed to be able to prove to myself I can do it.

Before I came out to Dallas I didnt know what I was going to do moving forward.

Asthma has cost me so much in life and it still does but being able to be among people who know what that fear is like and you don’t just pity each other or say “yeah I know what it is like” you answer it with comments about how you over came adversity and give ideas on how I might do the same. I also had to give up my job which I loved but despite this doors have opened and I will be moving on to great things and with the inspiration and motivation I have taken in from this weekend I will not be looking back.

The other great thing is that I know there is life beyond being ill and you can use your condition to better yourself and to better others as well. I may not be able to control my asthma and control my health but I can control what I do with it and use it to help make changes for others.

I feel so included in a very special group of people.

You guys are all my family and my tribe

x

IMG_1163