Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

Feeling much better and more positive!!

Its now the end of the week and since my last post things have been a lot better. I must say the support I have received over this week from others who also have chronic health issues has been over whelming. It was both reassuring and shocking to read comments from people saying they could have written what I did as it could have been them. This is awful that so many people are struggling with their conditions and feeling isolated but then also gave me reassurance to know I am not over reacting about the situation I find myself in but it is perfectly normal.

But this shouldn’t be perfectly normal when living with a chronic health condition. It has really rocked me reading all these comments. I thought maybe one or two people might have had a period of time feeling similar but not the sheer number. It has really made me want to do something to try and combat this but I am not sure how and I am not sure what to do.

The wanting to do something was reinforced today even more so when I met up with another severe asthmatic in Edinburgh. It was so easy to talk and even though we had only met through a support group it was easy to chat and there was a mutual understanding of how shit life can be with severe asthma and the restrictions it can put on your life.

Feeling a lot more positive about things now and know I am not alone and can ask for help. It is not a weakness to need help but a strength to recognise when you need to ask for help.

Tomorrow I have a busy day as it is the Leith Gala Day at Leith Links and the ICU Steps Edinburgh support group which I am part of have a stall at it to raise some money for the charity and raise some awareness about us and what we are there for. In-between doing that I am at the Sick Kids for the launch of a children’s patient and public involvement group too and will speak briefly about my experience of being in a PPI group. After that a trip up to Thurso to see family to really clear the cobwebs and reset the clock ready to face the world again.

 

#MentalHealthAwarenessWeek2019

(longest hashtag ever)

This week is mental health awareness week. It officially started yesterday but it was a mega busy day so did not manage to get anything up here although did schedule an instagram live for 7pm tonight @just_TUX for anyone that wants to join. Mental health has always been a bit of a taboo subject and not spoken about but why shouldnt it be. It is as organic as any other disease. It can be diagnosed and treated with medication just like a physical condition is so why is it so taboo. I think it is because it affects behaviour and you should supposedly be able to control behaviours. Not wanting to belittle mental health symptoms but with physical health you cant control a coughing fit in asthma just like you might not be able to stop repetitive activity in someone that has OCD. It comes on out with your control so what is different.

My blog had touched on mental health and how it has impacted my life but I have not explored it in more detail. Living with a chronic physical health condition the Dr’s focus on the physical side of things, the medications and the numbers they don’t tend to spend a lot of time asking about how you are managing mentally. It almost feels like it is out their remit. They are there to treat the asthma exacerbation and get you physically better but it is not until something major happens that they then maybe just maybe take your mental health into consideration.

Today I want to focus on denial, I have spent so long in denial for both my physical health and my mental health. I am getting better at speaking about my mental health but still not very good at it! I can write when I choose too and feel able to publish it here.

For me I have gone through a bit of a rollercoaster with my mental health. Having had such severe asthma for so long and being in denial about how much it was impacting on my life. I wanted everyone to see I was fine, I was pushing my body and my mind to the limit but so many thought it was just asthma or others thought it was just asthma that was bad because I was assumed to be a irresponsible student. I maybe was not always as responsible as I could have been but reflecting back a lot of that I think is me being in denial about how bad my asthma was and how much it was dictating and destroying my life. I often wonder now if I have some input from psychology then how would things have been different.

I have constantly been in and out of hospital with my asthma, from being rushed in with blues and twos to the resuscitation room, even being life flighted from one hospital to another over in Canada, countless intensive care admissions, 4 month long hospital admissions, central lines, blood gases, arterial lines, bed bound, tethered to machines just to live but until 8 years ago I never had any mental health input. Then I had 2 sessions with a psychologist but I cant say it did anything but then 4 years ago I was forced to go to see a psychologist but it has taken a while for it to really be impactful and make a difference to me.

I look back on it now and wonder if I had had psychological input would my health be any different from what it is now. It might not be but I am sure I would have been able to deal with my health and the experiences of it a lot better. In saying this I am not sure wether I would have been in the right frame of mind to accept the help to try and understand my condition. My way of dealing with things was to pretend it didn’t bother me or when dealing with hospital I trained myself to forget about what happened in the hospital. It was the only thing I knew how to manage it. The experiences you go through as a young adult who cant breathe is so humiliating, when you cant go to the toilet yourself or be left alone because your breathing is so bad and your blood pressure plummets it is easiest just to blank it out and forget about it. This I think did not do me any favours. I still find myself relapsing back to those ways as I just cant deal with what’s happening and not feeling strong enough to process it all. It is a work in progress and always will be to try as I try to balance the psychological aspects of living with a physical health condition.

Some aspects of my life I think I am still in denial about my health and how it really effects me. I hope others can read this and know it is normal to be in denial, it is normal to not want to acknowledge how unwell you are or that you’re not having a good day. Its ok to not be ok and its ok to ask for help. Even if you don’t want to talk there are other outlets- I will tell you now punching things are not the way to go about it and only end up with broken bones in your hand so writing I would say is one of the best options. No one has to see it if you don’t want or even just one person that you feel close to or even distant too. Everyone can find an outlet.

Everyone will feel in denial at some point with their health and sometimes we relapse not denial but it is ok. There is help out there. We cannot all be perfect all the time but know that we can come out the denial when we just find the best way that suits us and we are ready to accept our body, our health and our mind.

Out of negative situations there is positives, its just about looking at life in a different way.

Passive smoking……what does it mean???

apart from death?

I cannot count the number of posts I have done about smoking, passive smoking, the smoking ban and how it effects my lungs and the lungs of many others like me.

It really hit me the other day after parking my car in the carpark at work and walking the 200m to get into the hospital how many people I had to pass firstly at the pedestrian crossing, then the pavement to get to the narrow walkway to get inside the doors and then the narrow walkway itself and the doors was just like running a gauntlet and taking your life into your hands.

24….thats how many people (patients) I had to pass who were smoking on the short 200m walk. It is sickening to have so many people.

Im not sure those who are smoking really understand just what the effect is on other people as there is no way to liken it to anything else. I can never explain the mental and physical negative effects that it has on me (and Im sure I am not alone in those thoughts).

The fear I have is unreal. I am terrified that this is what may happen AGAIN

Both these photos are from the effects of passive smoke which hit me when I was no expecting it. The first photo was just before going to ICU after spending about 8 hours in resus, getting stable, moved to assessment unit to then get bad and need ICU. The second was taken in ICU after someone smoking below my open window and me having an asthma attack.

The fear of having asthma attacks is like no other. There are theories that you can make someone run up stairs with a close peg on their nose and breathe through a skinny straw to simulate what it is like to not be able to breathe but they can always take the peg off and open their mouth.

In the photos above I was so tired I just wanted to give up and stop fighting but you cant. If you give up you risk being intubated or dying. This is the reality. So many people die from asthma attacks that come from triggers that are out with their control. It feels like you are being punished for something you didnt do. It is more than just the attack itself but the consequences that go with it- being off work, missing holidays, medication that causes side effects, family being so worried about you, family needing to look after you to name a few.

Before the ban on smoking there were visible smoking shelters and it never used to be a risk to just get from your car into a building. I am not saying that everyone used the smoking shelter but a majority did and the risk was greatly reduced which matters so much.

My biggest fear in life is having an asthma attack, so imagine being faced with your biggest fear on a daily basis multiple times. It seriously makes me wonder if working is really worth the risk. I don’t know who to speak to about it. I blogged about it, tweeted about it, spoken to my union and will just about tell anyone who will listen. I love my job but it is getting to the point of weighing up risk and reward especially with being on a new treatment. Can I really justify the expense this new treatment will cost the NHS vs exposing myself to a major trigger everyday and risk attacks which could jeopardise the success of the trial.

Anyone who can suggest or make a difference to the smoking obstacle course I face please let me know (I have tried using other entrances but this is an issue at other ones too). as I am desperate now.

 

Itching, burning and needed advice.

Just to say before getting into this post, I attempted to get advice and help for the situation I was in but hit a brick wall. All is semi ok now thank goodness and all is safe.

In previous posts I have talked about allergic reactions and allergies, which of late (last 6 months or so) have been getting worse, more difficult to manage and coming out of the blue. I have had various allergies for a long time, followed a salicylate free diet and always reacted badly to insect bites etc, but nothing quite like this.

Something Im not really that familiar with about myself is really quite scary. I think it is because I just can’t get a hold of them and don’t know what it is that is triggering these reactions.

So anyway the other night I had a fairly bad reaction, I was home alone, it was the evening, I had maxed out on anti histamines and was not sure what else I should do short of scratch my skin off.  My face looked like this despite having 14mg pred, 12mg chlorophenamine, 180mg fexofenadine, 10mg citirizine on board!

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I went red and blotchy all over to so thought I had better call NHS24 just to check out if there was anything else I should be doing or if I should take some extra steroids to help.

So phoning through I spoke to a call handler and explained what has gone on and she asked about various allergies I have and if I could identify what caused this reaction. I wasn’t able to tell what caused it. She tried to get through to a nurse but couldn’t so said I should expect a call back within the next 3 hours from a nurse. So I just waited and with 10 minutes before the 3 hour time I got a call back from a call handler who ran through various questions which included if the reaction had changed or got worse which by this time it had spread all over my body, my face particularly my eye and ear on the left side were quite swollen and I had hives developing too. She must have been relaying this information to a nurse as she came back saying not to do anything different and see how it goes. I asked if I should take some more prednisilone or more antihistamine to help to which she relayed to the nurse and was told no. I was then told that if it didnt get better to call my GP in the morning and take it from there. I was also told to have a cold shower and they went. That was the end of the conversation.

I felt really upset and scared after this. I just wanted some reassurance about what I should be doing and what I shouldn’t do, what to expect etc whereas I was basically told to sit tight and if in 11 hours time (8am GP opening time) things were still the same or worse I should call them. I came off the phone feeling like an idiot. The first call I told them how I had had previous reactions and the last hospital admission I had an allergic reaction that sent me to high dependancy unit.

I thought to myself, clam down and just think what is the logical thing to do. I knew I could take more chlorophenamine soon and would be taking my ranitidine soon too which has antihistamine properties in it, I also had my inhalers to take and various nebulisers so my breathing was going to get a boost but I was still worried so I decided to take some more steroids. Even though they told me not to from previous reactions I have always been given steroids so I thought I should take them. I knew I wouldn’t be overdosing myself or anything by taking a dose and weighed up that it was safer to than not to take them. I got cool flannels to try and cool the hives down and stop my face burning. It was a long process but it eventually settled down about 4am or so. I did not get much sleep that night- infant my fitbit which was on me recorded no sleep that night at all.

I do feel now looking back, why did I bother to call NHS24 when they did nothing to reassure me or offer any advice. They left me feeling scared and vulnerable. I guess I am lucky on two fronts one that I have had reactions before and have had some experience at dealing with them and that I am a nurse so have some knowledge but if I hadn’t had either of those 2 things Im not sure what I would have done. The next step I guess would be to go to A&E but really is that needed for an allergic reaction. I suppose yes as they can be life threatening especially delayed reaction which I sometimes get.

From this I have learnt some good lessons.

  1. you know your own body
  2. im glad i have steroids to increase dose if needed
  3. im a nurse
  4. not to rely on NHS24 and go with my gut

I know my condition is quite complex and maybe I did over react but when you have lungs that are on a knife edge anyway you don’t want to do anything which might just cause them to tip and go overboard- because that is just too much hard work to deal with and a fight I really don’t have the energy for!!

I will be going to the GP and have immunology soon to so things are moving forward with finding out what is going on and if it is just that my body is not as strong so thats why I am having worse allergic reactions than I was before.