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.

My Fight Against Asthma- the app

Living with any chronic health condition can be tricky. Not only dealing with how you are feeling on a daily basis but everything that goes with it to keep yourself well- the medication, self management plans, anticipatory care plan, Drs appointments, hospital appointments. This is just a small selection of some of the things you need to juggle and remember to achieve the best possible health you can for yourself.

When my asthma was very controlled and not that bothersome all I needed to keep track of was my peak flow diary and making sure I had enough of my inhalers. But now it is a totally different picture. I have a folder full of various documents to keep track of what is going on and who I am seeing when. It can become very confusing and often things do get forgotten. Despite my efforts I have never found an easy manageable way to keep everything organised and in one place, but that was until now. In the very early hours one morning I stumbled across a post online advertising My Fight Against Asthma app which aims for the user to have an easy place to store everything about them and their condition. The creator was looking for people to test the app which I was keen to do. I have now been using the app for just under a week now and have found it one of the best I have used.

Why do I feel it is one of the best? Because the creator of the app suffers from a chronic health condition himself so has first hand experience of the difficulties conditions can throw up and also what people want to be make living with their condition easier.

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Who is behind My Fight Against Asthma??

Heres is the developers story:

“I have Cystic Fibrosis and I got really sick a couple years ago. I stayed sick for quite some time so last March 2014 I decided I wanted to start learning how to make apps to help people with CF. I released my first app (My Fight Against Cystic Fibrosis) in October 2014 and then wanted to expand the “My Fight” series to help other communities. I reached out to a few different communities that had some type of illness and I got the best response from the Asthma community. I then quickly got a group of people together to help me better understand how asthma is treated and what kinds of things they track and would like to see in an app that they could use daily. I started designing the app, got it approved by the group that I put together, and started programming it in February 2015. I wanted the app to be something that would help patients manage their health in a more convenient and efficient way. The best way I found that to be is to directly stay in touch with the patients I’m making the app for and develop the app around their needs and requests. Instead of an app made by a pharmaceutical company I wanted to develop an app inspired solely by “the people” trying to help “the people” of the Asthma community.”

Over the years I have tried various apps which have been produced to try and keep track of what is going on with my asthma but have found them all very restrictive in what they can offer. Looking back I wonder if this is because they are created by companies in association with their pharmaceutical products and don’t have much knowledge about what the needs to the person is.

What makes this app so good??

It is user friendly and easy to understand. For me a couple of functions stand out which no other apps I have seen have. First you have tabs to record all different areas of your asthma.

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Recording peak flow is one thing every asthmatic should do almost from pre diagnosis stage. This section of the app I particularly like because not only can you define where your red, yellow and green zones but you can input comments about what action to take when your peak flow results falls in a certain zone. These comments can be specific to you rather than the more generic plans which will often instruct you to increase you inhaler and seek medical attention (or along those lines). Being able to do this means those with slightly different action plans can input their individual needs.

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Another aspect of the app is that you can set reminders for a variety of different things: medication, appointments and peak flows. You can be alerted by setting an alarm in the app to remind you to take your meds or when you have drs appointments. there is also a section for knowing when to request a repeat prescription.

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As the app is still in the development stages functions are being altered to make them really fit the needs of those with asthma. Having patient input while designing this app I think has made it stand out from other apps. I cannot wait till the app is released as I think it will be a very useful tool for those who find it hard to keep track of everything but also those who are newly diagnosed or people who have trouble getting into a routine and remembering to take their medication. Setting alerts can prompt you so you never miss a dose.

If you are not sure about what information to put in the various sections of the app such as the peak flow ranges you can speak to your asthma nurse for help in determining what is needed.

Are you interested in this app and want to test it too leave a comment on this post and I will pass it on.

(I do want to say that all the thoughts about the app are my own!)

 

When the drugs all get to much and mistakes happen.

This is what I started to struggle with. I found I was making errors taking my tablets. I would take extra of some and not enough of others or vice versa. This caused me to get very ill when I became toxic as I was out with the therapeutic level for one of my drugs.

Living with a chronic condition which is so unpredictable is so difficult. You never know whats going to happen when. You need to think about everything you do and the consequences of it. You day is often dictated for you and you need to fit your life in somewhere.

With chronic illness medication plays a massive part. As the condition develops you just end up on more and more medication. Often to counter act the side effects of medication rather then the condition itself.

Working as a nurse I deal with medication a lot. I know a fair bit about different drugs and what they do. I can sort out tablets and everything for my patients not a problem.

But when it comes to myself I have recently been finding it so hard. Wether it is because I don’t feel well and trying to concentrate while I make sure I have taken the correct thing at the correct time and not forgotten I have taken it and not take it at all or forget and take extra. I would spend a saturday mornings sitting trying to sort through my box of pills, inhalers, liquids and nebs and sort them into a box for 2 weeks. It is not a hard job to do but I just broken down. I couldn’t cope with my medications any more I didnt want to take them, I got confused with when I was taking what. I knew I couldn’t afford to not take medication and could afford to make errors.

Feeling almost ashamed I called my GP and spoke to her about my problem. She was super and arranged a dossette box for my pills which the pharmacist will make up each week for me. My pharmacist who I know well phoned to chat to me about it but was really busy and wanted to see if I could wait till february before he did it but he would give me a weeks medication in boxes instead. I almost broke down. I was on the edge of tears. I think because it was all becoming real that I have really been struggling to cope with how much I am having to take. I said it was fine and I would just go back to getting my scripts 2 monthly but that would mean phoning my GP up and getting another script sent out.

For me I think I had rationalised out in my head that by having my prescription done weekly and someone else was putting my pills in separate bits for me then I would not be as aware of how much medication I am actually taking. I can swallow about 15-18 pills at once with  no bother so in my head having them in all in a box with no input from myself then I just have to pop one pack and chuck them down compared with before having to pop what felt like hundreds of pills out their packets each morning (twice in the morning so I could put y lunch ones in a box for work) and night. By the pharmacist giving me a weeks supply in boxes I felt I was still bogged down by loads of medication and almost just need a break from it. A break which I can’t have as can’t go without taking it!

Having the box has made a big difference. I was getting so confused by what I was taking and how much I was taking and when. Even when I had a list I would get lost and forget what I have or have not taken. This was not so bad when I was feeling well but on days when I have had little sleep or am feeling pretty bad it was such a mammoth task. meds

This picture I posted to instagram shows what i used to have in the top two photos. I would need to use 2 7 day pill organisers to fit everything in for a week and had a huge box of all my meds. It would come in shopping bags. Thank goodness I don’t have to pay for those bags!!! But now the bottom 2 photos I get my inhalers in one bag and nebs in another and my pills in the dosette.

It has only been a week but so far I have already noticed a difference even if it is just to make life easier and psychological so I don’t think I am taking so much I don’t care. I helps.  It also means I don’t feel like I am living in a pharmacy. Other than nebs and inhalers lying around to reach when needed I don’t need to see piles of pill boxes anymore.

I am really thankful to my GP and pharmacist for sorting this out for me.