Scared of running out of energy.

This is how 2018 started for me:

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(Yes they are TED stockings to prevent DVT’s and yes I do know I don’t have them on properly but I was so hot and bothered that I couldn’t stand them up properly. I even agreed to wear a gown which I never wear if I can get away with it!!)

After a fairly tricky December with various things going on the adrenaline ran out and the day after my Granny’s funeral I just felt awful. I didnt think it was anything that bad so spent the day in bed, but by the next day I struggled to walk to my kitchen from my bedroom which is 8m away. I got myself back to bed and get horrendous. My heart rate was up at 170-180 and I new I wasn’t going to be able to sort this out at home. It was a trip over to the Royal Infirmary where I got to welcome in the New Year in A&E fighting for breathe and waiting to be stable enough to get transferred to the high dependancy unit.

The experience in A&E was really positive other than a small scare with actichlor in the resus room but we managed to avoid anything major happening and there was no reaction as the actichlor use was halted!!! (in a previous admission I had a very bad reaction to actichlor cleaning stuff and ended in critical care as a result). The nurses and Dr’s were so caring and listened to me. It was a consultant on who has looked after me before and knows my reluctance to go to critical care unless I absolutely have to, and was understanding about the issues with getting blood gases, even peripheral access and bloods let alone arterial blood. Having someone take a lead who works with the patient makes the experience a lot easier and explaining why they were doing what and what they expect from it. I could tell fairly quickly after the first lot of IV magnesium and back to back nebulisers that this wasn’t going to correct itself that quickly and I knew that the A&E staff would be talking to critical care and I would be reviewed by them.

I could hold my own and despite starting to feel tired (when I say tired I don’t mean that I could do with a nap but the physical exhaustion of not being able to keep breathing) but was moved to critical care unit to be treated where I stayed for a couple of days. I hate being there- not that it is ever fun to be there but its the thought that you are there so if anything happens they can act on it quickly, you have the potential to get worse but at the same time being there is a comfort as you know you are safe and if something was to happen then you would be caught quickly not get too bad. This bit was all ok and I felt safe and in safe hands. It all changed however when I was moved to the respiratory ward.

The first night in the respiratory ward I felt ok. I was in safe hands, I could control my environment, I could control what I was exposed to and what my body needed this was because I was in a side room. It never lasts long staying in a side room especially with the huge number of flu cases coming into the hospital. So naturally the next day I was moved into a 4 bedded room to allow for flu isolation. When the change nurse told me I was being moved I said I understand why I need to be moved however there is a risk to my own health with being moved as last time on this ward when I was moved into a 4 bedded room I was exposed to triggers by another patients relatives and ended up in intensive care and once back out of intensive care I was reviewed several times by the ITU drs due to further exposures. Naturally I was apprehensive about this happening again and did say to the charge nurse about this and asked that there could be more awareness about who enters the room and limit the products used. I wish now in hindsight that I had stuck to my guns and refused to move because of course the charge nurse did not pass the message on- my opinion is that she thought I was just being fussy because I was being moved out.

Anyway I was moved- a patients visitor who also had children running round the room, people stinking of smoke and about 6 people around her bed meant my chest got worse. Not the children running around but the relatives with the smoke. This is the point at which I got scared. I was already exhausted and getting up to the bathroom was hard work but I was managing it and able to pace myself because I could control this. I could not control the visitors who selfishly didnt think that coming into a respiratory ward might be a good idea to not smoke before coming in incase they cause a problem for other patients. I am lucky in that I can do my own treatments so did some treatments and decided I needed to get out the room and keep myself safe. That didn’t go to plan and I was caught by a nurse on my way out the room and was told I was too wheezy and unwell to be walking around the ward. I tried to explain that I didn’t want to be in the room but I was told I needed to be on my bed and have some nebs. I was given a surgical mask to try and help protect me from the irritants but not sure how effective that would be.

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This was the point I was terrified. I felt like I was being locked into a cage and exposed to my worst fears. I had no way out and no way to protect myself. My other fear was that last time I got so tired and was so exhausted I just didnt think I could keep fighting to breathe. Last time I was in a better position when I went down hill and had had more rest in the run up to the downfall but this time I was only just out of critical care and really didnt know where I would find the energy from to fight this one and with the trigger still present.

I didnt want to be a pain in the neck and tried to explain this to the nurses through wheezing and gasping for breath every few words. Thankfully the other charge nurse came to speak to me and was understanding to my fears and he got the Dr’s as I wanted to get home to be in my own environment where I could control pretty much everything and as all my access had failed they wouldn’t be doing any IV treatment so I was on nebulisers and felt I would be safer at home. He stayed with me while the Dr’s were there and they explained because I was not even 24 hours out of critical care that I really couldn’t go home and be safe because of how quickly my chest goes off. I understood that and did say that I wouldn’t go against they advise and wouldn’t be signing me out but I wanted them to understand my fear as I was just so tired I really didnt think I had the energy for another fight to get on top of my breathing.

It is so scary when you just don’t think you can continue doing something. It is a fear you cannot explain to anyone. It is a terrifying. You can do nothing to get away from it, and nothing you can do can make it better until the medication works. You don’t know how quickly the medication will work and how much it will help as each time is different- some attacks respond very quickly to treatment and other times it doesn’t.

Thankfully things were ok and I did get on top of things and seeing a registrar I know and who knows my chest he listened to me and thankfully despite the drop in peak flow and need for a few more nebulisers than normal over night I was allowed to get home as they felt it was safer for me to be at home where I can control my environment and control what I am doing and prevent myself being exposed to things which may cause my chest to get bad. I have clinic on Monday with my consultant so will be able to have chest sounded then and check everything is ok.

This admission has again thrown up thoughts to me about going to hospital- risks vs benefits which in some ways scares me that I have these thoughts because I know as a nurse and also as a life long asthmatic you don’t take a gamble about not going to hospital. You go to hospital if you need it- asthma won’t take your feelings into consideration and think it will just lay low because you dont have the energy to fight the attack or you have plans in the diary. I hate that I think at times when in hospital that I wish I had never come in because the experience has been so awful. The first 2 stages of being in hospital which by all means should be the worse (in resus and critical care) are actually the easier to deal with despite the stabs with needles, the fight for breathe, the fear, the inability to do anything for yourself compared with when on a ward and you can breathe a little easier, don’t get stabbed for blood or access lots and can get yourself comfy etc. Its the wrong way round and there needs to be ways of changing that and making it easier. Visitors need educated on how to be when they visit hospital- visitors know not to come to hospital when they have colds, nausea/ vomiting or diarrhoea that they shouldn’t come to visit people because of the risk they pose to patients but they think that smoke isn’t a danger which to many smoke is even more of a danger than sickness.

The start of the year has defiantly not been the one I had planned but it can only go up from here and hopefully this small blip is just that and is a wee blip and I can get back to work and doing everything soon.

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