What do you do on days when there is no air??

Today has been one of those days where it feels like there is no air. You are left gasping for breath just moving a few meters and even sitting still feels like you are trying to breathe through a pillow. It is horrible and unrelenting. Not only is there no air and very humid the pollen count is through the roof, pollution is high- just about everything thrown in that an asthmatic does not want to see in the weather report.

I feel like I have clock watched all day willing the hours to go by until it is night and there might be some relief as the sun goes down.

But what do you do on days like this?? What can you do to take your mind off the effort that breathing brings when even eating and drinking is an effort.

Today I have just made sure I have everything within my reach, nebulisers, tv remote, phone, water. Trying to limit the activity and not making any movements that can be avoided. It is tough as you always think you have everything to hadn’t and then you don’t.

I have been lucky today that I can watch the lacrosse European Championships as it is being streamed live which has passed the time very well. I have found I have been dozing on and off too. I am still so grateful that I have my electric bed so I can prop myself up, and relax easing my chest sightly. I am also super fortunate to have a Dyson Cool Air Fan with filter which has been life saving today and on previous warm days. I have had it on pretty much permanently when I am in as it does offer a lot of relief and is not just blowing warm air around. It is actually cold air it blows out!!

When the weather is this hot and muggy I find eating a huge difficulty. I have no appetite and anything substantial that I do eat I find myself feeling like I am choking as I just can’t breathe properly. This is not isolated to when the weather is like it is but also when I am unwell with a chest infection or in hospital post acute exacerbation. I have found my solution to this though!!!

Strawberry Yazoo is my go to drink. Whenever I am not great this is what I like to have. It has all the pick me ups you need but also does provide you with some nutritional benefits too- although you should not use them as a meal replacement I do find that when my breathing is bad these are the best things. I also always have a fridge and freezer full of fruit pre cut or ave berries etc so I have eat them easily and they are not too bulky, the freezer always also has ice pops, ice cream, ice lollies because you just need them to cool down but also nebulising a lot dries my mouth out and makes everything feel funny so the coldness is really nice on my mouth too.

A lot of people have been messaging me today with their tips and tricks for the hot weather. These include:

  • Bowl of ice in front of a fan
  • cold showers or bath
  • driving in the car with the air con on
  • a cold towel on the back of your neck

Others have also suggested going to hospital but I just think that would be as bad except they could give me IV mediation to make my lungs happier but it will still be airless and really hot in the wards- in fact probably even hotter than it is in my flat and then you add in lying on a plastic mattress. I think I will stay put unless things do get very difficult and I am getting close to my limit of what I am allowed to do at home. One friend did say hospital wouldn’t be that bad because ICU has air con!!! I would hope that I would not need ICU (even if air con seems like a nice idea)!

Any other ideas people have for staying cool and making the lungs feel a bit happier please share!!

Cleaning products and lung health

Reading the BBC news online I came across an article about cleaning products and lung health. A study carried out in Norway found that using a micro fibre cloth and water was suitable for most purposes rather than the products full of chemicals which advertise themselves as killing 99.9% of all bacteria etc.

Cleaning particularly house work is something that has to be done in all homes, offices, public places etc. There is no getting away from it unless you prefer to be in an area which is not cleaned. Not many people enjoy cleaning and it is a chore rather than a hobby or enjoyable past time (forgive me as I know there are some people who do enjoy cleaning and find it therapeutic) with needs to be done. Many will leave it as long as they can possibly get away with before they get the mop, bucket and all the different cleaning products out to make everything sparkle and smell nice while removing the limescale, grease, dust etc from surfaces.

The reason I am writing about this is because for some people like myself cleaning and cleaning products can be life threatening causing acute breathing difficulties and allergic reactions. A study highlighting that water and micro fibre clothes are just as good as Mr Muscle, Cif, Cilit Bang and all the other products which you end up buying which all have a different job to do in the house is fantastic and could potentially remove a massive risk to my health.

You wouldn’t think that cleaning products could cause such big issues. You may be thinking that of course some products particularly those containing bleach will set my asthma off and why am I making a whole blog post dedicated to cleaning products. Well for me other than the strong chemicals posing a risk to my asthma most cleaning products also contain salicylic acid which I am very allergic to.

At home it is ok and I can avoid things that pose a risk by just not using them and finding alternatives. I am in control of what is and what is not used to clean my flat (whether I am doing it or my Mum) so I can eliminate as many risks as possible. However out with my safe haven of home, there are cleaning products everywhere- work, restaurants shops, hospitals etc. I do not know what is being used or what has been used on the objects I touch however with this new evidence suggesting that there is not always a need for chemical products, there is some hope that places may adopt this and change their cleaning regime to water and microfibre clothes.

For those who are not allergic and don’t have difficulties with their breathing must think what am I going on about and why am I making a big deal. Well cleaning products have been life threatening. Once I was not aware that my nebuliser mask had been cleaned by a member of staff on the ward when I had been admitted to hospital. They thought they were being helpful and even the staff member admitted she had assumed you cant be that allergic to even mild cleaning products and she thought it was mainly food stuffs. The result of the clean nebuliser mask was this:

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This photo I took after I had been given oral and IV anti histamine, IV steroids, a number of back to back nebulisers and about 4 hours after the initial reaction. You can clearly see were the nebuliser was on my face and where I have reacted to whatever it was cleaned with and the residual cleaning product left behind.

In hospitals it becomes even trickier to try and avoid cleaning products and many of them seem very toxic given some of the bugs they need to kill to prevent the spread of infection and increasing the number of people having to stay in hospital longer because they have not been able to recover from their initial illness due to developing another illness from exposure to bacteria. I would never expect the NHS or hospitals to change their cleaning regimes as the infection control teams will have assessed the best possible way to ensure the wards are kept clean and safe. Having said that the products used to achieve this do pose a really big threat to me and have resulted as fair few times in me staying longer in hospital due to having an allergic reaction to some sort of cleaning product being used. It has once been such a bad reaction when I was in hospital that I had to be moved to the critical care unit to be stabilised.

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Above is the remains of an allergic reaction. I think this was a good 8-9 hours after the reaction. I was in hospital due to a chest infection which had my asthma worse. I had narrowly avoided going to critical care when I was admitted but did have to be in a monitored bed and attached to all the machines. This meant I wasn’t allowed up to the toilet and had to use a commode- which I used but when I stood back up to get back into bed I felt awful. My skin was burning, itchier than hundreds of midge bites, my heart rate jumped up to 180 ish and breathing was very difficult. Thankfully the respiratory team had just arrived to review me anyway when I had this reaction. The Dr’s were looking at the monitor as my heart was going mad, and my oxygen saturations dropping but the respiratory nurse specialist who was also with them was talking to me from the end of the bed. She said she could just see the bright red rash spread before her eyes and soon I was scarlet all over with parts of it blotchy. Again I was given everything to treat it and quickly moved to the critical care unit. It turned out the commode I had used was cleaned with some other product rather than the normal one so the contact of it on my skin was enough to spark a reaction.

There have been other situation where cleaning products have caused a reaction for example my youngest brother gave me a hug once but the washing powder he used I met have been sensitive to as where bare skin touched his jumper I had a blotchy reaction which looked very bizarre- almost like a golfers tan except the tan was red inflamed irritated skin and not a nice bronze colour.

From this you can see that for me cleaning products pose a huge risk but not predominantly from an asthma point of view but an allergy side. Of course the allergic reaction in turn sets my asthma off due to the irritation to my airways from the chemical etc etc. It would be fantastic if more studies were done which further proved that chemical based cleaning products are not required and water with a micro fibre cloth is just as good.

This would make the risks to many not just myself but other who have allergies or asthma which is triggered by strong smells from cleaning products or the chemicals themselves much less and mean that we are able to preserve our lung function and lung health by not exposing them to harmful triggers. Until the time comes and chemical based products which cause me harm are less widely available I have my own way to try and protect myself. I have a vogmask which many other brittle asthmatics, ILD or CF patients recommended to me. This mask has a filter to can protect me from inhaling the chemicals which could cause a reaction. This won’t eliminate all the risk as there is still the risk from contact. This is the vogmask which can be bought online. I do feel pretty self conscious in it just now if I wear it in public but I am sure as I get used to it and reap the benefits from it then I won’t notice it so much.

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No matter how much preparation asthma can still bite!!!

This weekend was a fantastic weekend. It was the MacRobert Tournament which this year was the biggest in the tournaments history with teams coming up from Leeds, Manchester and across from Norway. It was fantastic playing just women’s lacrosse as well as mixed lacrosse. Women lacrosse is no different in its rules but you do find there is more stick work skill as some boys (not all though) don’t tend to have the stick work and will just use their speed and the frying pan technique.

Saturday didnt go as planned. The weather was not great. It was freezing cold. I played a game and a half and then helped at the come and try session which was running for school kids to come and try not only lacrosse but also shinty. Saturday was a much better day as the weather was great, sun was out and nice warm weather. There were a lot of tired legs around but the team did well and won the mixed tournament bringing our trophy count to 4 for the season.

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Saturday was not my day though. A BBQ hit me with no prior warning. I say hit me i don’t mean physically hit me but the smoke from it induced a small asthma attack and I had to get my team mates on the side line to run on with my inhaler. Trying to take an inhaler in full goalie kit while a match is in progress is one of the hardest things to do. Overtime I tried to take it the ball would turn over and we were back defending. I managed to get through the game just- thankfully they were only 20 mins long. After the match a couple of nebs and I felt better and ready to go again but once back on the pitch after a few minutes my chest just tightened up. I couldn’t call or anything so I had to get off thankfully our other goalie who was playing out field for another team was changed and could hop in for me. Devastated that that was the end of the tournament for me but it was a real struggle just to get off the pitch so I knew I wouldn’t be able to go back again and play. Thankfully it was such a nice day it was alright sitting on the side watching.

It really bugs me that no matter how much preparation you do there are still things which are so small to others can make such a big impact on a set of twitchy lungs. Most people may not notice the smokey smell but my lungs felt it before my nose smelt it!!!

Today I have been really short of breath and have a really hoarse voice. It is horrible with this ongoing feeling of tightness and someone constantly sitting on your chest. I long for the day that asthma can be better managed.

I thought the end of the season was going to go really smoothly but maybe not. Plan now is to rest and stay low to be well for June where I go to Italy, London and Prague so I need to be in top form for that!!!

No wonder asthmatics don’t go to hospital early!

One of my previous posts I titled as the most terrifying experience. At the time I thought it was, but sadly it was not and last week it went to a whole new level of scariness.

I had not been discharged long but I needed up needing to go back to hospital.

It all started well. I was seen in resus and after a few hours was stabilised with IV Magnesium, IV Salbutamol, IV Hydrocortisone and lots of nebulisers driven by oxygen. All was going well. My care plan was being followed and all going well. Maybe a little to well!! Coming out of resus was where it all went downhill and led to the worst time I have ever had.

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Being moved from resus to IC/HD is always a good move so when they said I was moving I was happy. It meant I was getting better and on the road to recovery. This was not the case this time. There was a plan in place for when I was moved. To continue on back to back nebs to keep on top of my attack but this was not done. I had to wait an hour and a half and ask over 6 times to get a neb to be told by a nurse I was fine and he was too busy and would come back to be later. By this time my blood pressure was rising my heart rate was rising and my oxygen was dropping. This was not the time to say I was fine and he would come back to me. I felt the nurse didnt think I was ill. I thought he thought that because I was young I would be ok. I was not ok. I was terrified. It was harder and harder to breathe and I thought by going in early I would be seen early and be back out again. I kept asking for nebulisers and not getting them. writing it like that makes it sound like I was unhappy because I was not getting what I wanted but it was far from it. I was desperate for a neb. My chest was getting tight and I really couldn’t breathe. On top of that I was scared and thinking all this stuff about what might happen. Eventually I got to see a Dr who questioned why I had not had the nebs etc I was meant to. I felt relief at being given a neb but also because I thought the plan would be followed again.

I got two nebs but after that it all slipped away again. I tried to tell the nurse about my care plan but was told he didnt need to see it and wasn’t his concern. I kept asking for nebs but was being told he was too busy. I am sure he was busy but all the times he told me he was busy would have taken up more time than actually giving me a neb and the amount of time he had to look after me in the long run. I ended up using my own supply of nebules to treat myself as I felt so scared and want to get better. By this time I had had enough. I tried to get up so I could get dressed but I fell and really hurt my knee but at this point a combination of lethargy, fear, tiredness and the effects of the asthma attack were taking their toll and I decided it was time to self discharge myself. It was rash but I felt it necessary. It got the attention I needed and the Dr came over to see me with the nurse in tow. I also ended up being reviewed by intensive care. I told the nurse that this was all on him and if I went to ITU or had a prolonged admission it was on him and I strongly believe it was. His attitude was horrible and it has made me really question going into hospital and getting help. If I saw him again as I came into A&E I would refuse to go in as I really thought I may not get out of A&E in his hands.

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After falling and threatening to self discharge I was moved through to the assessment unit where I was in such a state they wanted to give me lorazepam to calm me down. Thankfully the Dr had been filled in on what had happened and knew I just needed out of A&E and I would be ok and they were right. The rest of the admission was fairly uneventful but I shall blog about it another time.

I wanted to concentrate on my experience in A&E. I have had so much time to think about it and the consequences of it. A few years ago the national review of asthma deaths was published highlighting the shocking statistics of asthma death and admissions to hospital. From this I tried my hardest to make sure I was very proactive with my treatment and get help quickly to as to make asthma less of a killer than it is. How can we do this if asthma is not taken seriously in hospital where it is meant to be safe and you are meant to be looked after.

I am lucky in that I have been to hospital a lot and luckily never had such an experience and I knew what I needed. What would have happened had I been new to asthma or not known what was happening. I was able to self medicate to make sure I was ok but others may not have been so lucky and the statistics would just get worse. 

The support I have received from Drs, and the respiratory nurses has been fantastic and I have had the help to come to terms with what has happened and also will get the help to put a complaint in about the treatment I received. It is important that feed back is given because if I have been so scarred by events imagine what someone else could have been. They may have taken themselves out of A&E and died from not getting help for their asthma. Its important to get the message out and get people to see how serious asthma is.

I have never made a complaint to a hospital about the treatment I received but I feel this time it is so important that I do for a number of reasons. I was still trying to come to terms with my previous hospital admission and how I went down hill so quickly in a safe environment, I also had lacrosse trials of Scotland and it was my 30th birthday which I had a number of plans for. All of which I missed as a result of the poor care I was given. I may be unfairly putting all the blame on one person and that person being the nurse but to me it is no
t unfair. The way in which I was spoken to and the lack of respect and care I was given has left a huge black mark and really scarred me. For my own sanity I need to deal with this and make it known what happened and what is being done to resolve it.

It will take a lot for me to get my confidence back and feel safe going to A&E again. I know I will have to go back to A&E at some point and the whole reason I do everything about raising awareness for asthma is to changes opinions of asthma and get people getting help early by taking it seriously. If I don’t feel confident and don’t go to hospital for help then I am a hypocrite and should stop doing all the raising awareness and campaigning I do.

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As you can tell this has left a really black mark on me and I will get over it but it will take time. I do want to add that as a nurse myself I do understand how busy days/nights can get and we can’t do everything the patient wants us to do but when you see them laughing and joking and talking about nights out standing round the computer it is fair to see and hear they are not as busy as they are saying and when I see them as a patient doing this it makes me really angry.

I would hate to be in this situation again which is why I am going to share it with everyone I can. I could have gone home but I managed to stay and ended up receiving some of the best care I have had and did get better. I was not able to trial for lacrosse, or be at home for my birthday or go to any of the planned meals etc but I am now home and will enjoy that.

For now I will continue in the work I am doing to make sure that asthma is taken seriously and awareness raised.

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Pharmaceutically Enhanced!

I read an article recently which challenged my thoughts on modern medicine and how I have become totally reliant on pharmaceutical products. I am so thankful for all the developments in medicine and where medication is now.

Everyday I take a concoction of medication and far too many for someone in their late twenties almost 30. I take a range of bronchodilators, inhaled corticosteroids, anti leukotriene receptors, oral steroids, antihistamines, xanthines, proton pump inhibitors, anti emetics, bone protection, painkillers, muscle relaxants, antidepressants and hormones. These all range from inhalers, nebulisers, nasal sprays, tablets, injections. This is just on a regular basis but add in emergency treatment of IM and IVs as well. I wonder what has happened to me since it was just 2 inhalers- a preventer and reliever. I never even knew about all these there medications and it has only been recently I have really understood what they all do, how they help me and what benefits I get from them.

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I am constantly working with my team to work out ways of reducing the numbers of medications and that I am only taking what I need to take and what actually does something. There are times when I just wonder why I take everything everyday when I can sometimes find I get no benefit at all, but on the good days I can really see how they help. I can go from gasping for breath to be able to breathe freely with the help of my medication regime and all the different things.

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As great as this all is I can’t help but think where would I be if we did not have these great advances in medication. If we were all still relying on asthma cigarettes, powders or the later developed atomiser and then pocket atomiser- something about the size of a portable nebuliser rather than a pocket inhaler. Im not sure I or many others would be able to do half of what I do without the medications we now have. Im pretty sure I would be in quite a bad way and stuck indoors all the time. It is a thought that doesn’t bare thinking about.

So many of us, myself included complain constantly about the amount of medication they take and the side effects. My list of medication is half medication for my asthma and half to treat the side effects of the medication I take for my asthma mainly the prednisilone. Reflecting now as much as I hate my medication I am hugely indebted to the researchers and pharmacy companies who develop these new medications for all different diseases. Selfishly I want them to focus on developing medication to help conditions like asthma which don’t get the funding as I desperately want to have the life I used to even though I am ever so grateful for the life I have now it would just be great to turn back time to the good old days!

I guess the article I read just highlighted to me how fortunate I am and we are that we are here in the modern world compared to time before.

For now just need to keep on….

Shaking, Rattling and Rolling!!!

The summer weathers here but no everyones happy!!!

Normally when the sun comes out everyone is rejoicing but there is that small group of people who really do not like it. I guess Im sort of one of them. I love the summer. It means I can wear my shorts and enjoy the long summer nights but with that comes the suffocating feeling of the heat and humidity.

For the past few days it has felt like the air is really thick and that I have been wearing a compression vest squeezing my chest. Im not wearing any vest it is just my lungs reacting to this new weather that we are having just now. I noticed this most yesterday. I was staying up in Crail overnight which is on the east coast of Scotland. The sea air was refreshing and breathing was easy however as I drive inland and home I found my chest felt tighter and tighter and it was due to this warm weather. There is sense in the old wives tail that sea air is good for a bad chest. I should retreat there for the summer months.

I checked the weather forecast earlier and I really wish I hadn’t. there is thunder and lightening forecast and this fills me with fear. Last time we had similar weather followed by thunder and lightening I ended up in the high dependancy unit having suffered a really bad asthma attack. It was brought on by changes in the air pressure. I was terrified during this attack and unusually I remembered most of it. Inparticular I recall one of the nurses who I know really well sitting with me all night because I was so scared and just couldn’t get my breathe and not getting much relief from medication. I can never thank that nurse enough.

This apprehension I don’t think is helping my chest much at all. I have taken an extra nebuliser tonight to try and get some extra relief and I have my fan on to circulate the air and make it a bit cooler in my room to sleep. I am hoping things will be ok and all this worry will be for nothing.

In other news I am still having a bit of a hard time dealing with not being able to play golf how I want and having to miss things. Its getting to me a lot as many are starting to comment about how I am not the person I used to be. This is quite a complex topic so I will save it for another post.

I hope everyone else with twitchy airways is doing ok tonight and not effected to badly by the humidity. I do hope that if we get the thunder and lightening then the air is clearer afterwards.

Out on a saturday night

It was lovely tonight to have some normality. You may think it very odd to be writing a post about being out on saturday night but it was a big deal for me. I still ended up in bed by quarter past ten but have been out since 6pm. I feel really good that I managed it.

It was the Lacrosse Scotland fundraiser for their tour to America. They put on a pub quiz and a raffle. It was great fun. We at Capital Lacrosse Club have a few people who are in the squad going to America on the tour so it is great to support them. It was even better because I was able to put all the useless knowledge I seem to store to good use. Our team the “Astro Burns” (we, well our club train on astro) came in first place!!! A tin of biscuits and 2 bottles of wine to the good. It was a great laugh.

The team probably don’t realise just how much of a big deal it was for me. It is the first time in ages I have actually been out. I find my asthma gets worse at night and as I normally am doing things in the day by the time night comes I am so exhausted I just want to flop. So instead today I had a peaceful day so I would be good for tonight and I am so glad I did.

In preparation I had a few nebs during the day and one just before I left to make sure I didnt get wheezy as I knew I would be around strong perfumes, people smoking outside and a dusty pub too. I am glad I did all that. It sounds way over board but I would rather be over prepared than under and have to go home early.

I hope now that I have managed to do that I will be able to do more as I know I can do things in the evenings without having to leave too early.

I have a busy few days coming up. It is my birthday on monday so sunday I am out for lunch with family and then dinner on monday with the other side of my family!!!