What do you do when you have a bad or good travelling experience when you have a disability?

I have been very lucky that despite my asthma I have been able to travel (mainly to attend conferences). I have travelled via a variety of different methods: train, plane and taxis.

Thanks to the hidden disability lanyard I have been very fortunate in the treatment I have received in airports. I have also been able to use it on trains but now that I am walking with a stick I have noticed people come up to me more to offer help or get up from seats and give me theirs.

I decided to write this blog after some time to think as at the time I was angry, humiliated and really not thinking in a constructive manner. I am now thinking about how to change this negative experience I had into a positive one.

In September I went to Madrid to attend the European Respiratory Society Congress. The travel out was spot on. Arriving at the airport I had my sunflower lanyard on and was helped with my bags at check in and offered the use of a wheelchair to get me up and through security. I declined as I knew I would be seated for a large portion of the day so wanted to take the opportunity to get some walking done.

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The one point that most people dread when going through the airport is security. I know I do. Having a hidden and visible disability and wearing my sunflower lanyard I went up to the special assistance gate at security. An officer asked me if I needed some help. I accepted and she helped me take my laptop and then medical supplies and put them in the trays. She then escorted me to the bit where you walk through the scanner. She explained that they needed to put stick through the X-ray but they had a wooden stick for me to use while I got through the scanner myself. Due to my inability to walk without my shoes and splint on, they made other arrangements and swabbed my shoes, provided a chair for me to sit on while they did this and also stayed with me to help me put everything back in my bag and make sure I was ok.

Boarding the plane was the next challenge. All sorts of thoughts were running through my head. Dreading the thought that we might have to go on a bus to get to the plane and then climb up stairs to get into the plane. I was able to ask at the gate what the boarding situation would be. I was then asked to take a seat behind the gate where I was introduced to the crew and then told I would board the plane when the crew went on too.

It was all so seamless and almost had that too good to be true feeling. It was really refreshing to have such good service in what can be quite a stressful time. I have sent a compliment form into the the airport and BA who were the airline I was flying with.

On the way back the airport experience was polar opposite until I reached the gate to board the plane.

Arriving at security I once again had my sunflower lanyard on and went to the special assistance area for security. This is where I can only say I felt humiliated and felt like totally breaking down. No help was offered at all. I did asked for some help but this fell on deaf ears. The area was not particularly busy so I was shocked that my request was turned down. I sorted all my stuff and got my medication and medical devices out my bag and into a tray, pushed them up the line till they went through the X-ray. I then went to walk through the scanner and was greeted by a security officer who spoke good english and told I couldn’t take my stick through or wear my shoes or my splint. I asked if I could wait and they could go through then if I could be given them back so I could walk through. I was told no and then my hands were taken and I was just about dragged through the scanner, almost falling flat on my face. I was tripping over my foot as I cant move it myself and have no feeling below my knee. I was crying inside just wanting the ground to swallow me up, hating myself that as a young person I was being humiliated in such a way. I kept thinking I should be able to walk normally, I shouldn’t be in this situation. Once I had been dragged through the scanner, my hands were dropped and I was left to try and get myself to the trays with my stuff in and get myself sorted.

I managed to get myself sorted without totally breaking down. On the way out of security there was one of those things that has buttons asking me what my experience was like. I obviously pressed the button with the red sad face. A man then came an asked me why I pressed it. I gave a brief description of what happened and the man just nodded me. No offer of apology or anything.

I just pulled myself together and then joined the others I was travelling with, putting the experience behind me so no one would know just how upset I felt inside.

The rest of the travel home was seamless. I travelled home with Easyjet and once again the staff were very helpful. Unfortunately the seat I was in was considered an emergency exit but they found me another seat which was actually a whole row so I could put my leg up.

After all of it I was so glad to get home and back in my own environment.

One thing I have learnt and looking back I would have done things differently. While in security at Madrid airport I would have advocated for myself. I would have stood my ground and made sure my needs were met rather than be humiliated as I was. I wish at the time I had been able to stand up for myself but I was caught by surprise so I guess I was really shocked. You don’t expect it.

In future I will be prepared. I will have a written explanation of why I need the stick, that I cant walk without it or without my splint, and also what my medical conditions are. I will have this all written in the language of where I am going to. I will also use other communication cards in the language of the country I am going to. I want to be prepared and I don’t want to go through this experience again. I also don’t want others to have this experience as it really destroyed me, my confidence in travelling solo with no support has dwindled. I should be able to travel Im a young person who wants to experience life not be humiliated and shamed into not wanting to travel only own again.

If anything can come from this experience it is that I have learnt more to advocate for myself and also use my situation to prevent others having similar experiences.

Smoking on NHS sites- it is STILL happening!!

I know many of you will think I sound like a broken record particularly as I have written several blog posts around the issue of the smoking ban on NHS premises. The first of my posts was back in 2015 on April 2nd. written after legislation was passed by the Scottish Government to implement a ban on smoking on NHS hospital sites. This came into force on the 1st April and must have been an april fool as it is still not been addressed. The links to other posts surrounding smoking on NHS sites are:

Over the course of time I have been in touch with various different outlets and services to try and get action taken on the issue of continued smoking on NHS sites. The situation for me has only go worse. It appeared that every day there were more and more people congregating outside the main doors of the hospital smoking. This could be a mix of patients, visitors and most shockingly people who worked in the hospital.

For me it got to the point that even coming to work half an hour early was not enough to avoid the people smoking. Eventually it made the choice on stopping doing clinical work easy as it meant I would not be putting my life at risk just to get into work. In fact the other week I had to go to the Royal for a ECHO of my heart, I called to have this rearranged because already feeling very chesty and unsure if I was going to need to be admitted, I saw this huge group of people smoking right outside the doors. I couldn’t risk going past. It may have cost the NHS some money by me cancelling last minute my appointment but it is far less money than the amount of money that would be required for me to go to A&E, +/- ICU, and the ward all because I tried to get into the hospital (a plan of safety I might add) to attend an appointment. In an extreme view the select patients that are smoking are preventing a group of patients accessing healthcare safely. What will it cost for this to be addressed.

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(Photo above was me after having an attack trying to get in to work a few years back)

Clearly legislation being passed in the Scottish Government is not enough. I am unsure why the issue is so much worse at the Royal Infirmary of Edinburgh than other sites in Edinburgh.

If the smoke did not have such a bad effect on my lungs physically I would go up to people and tell them they cant smoke there and they need to move off hospital property but that is just asking for a hospital admission for me. I think what makes me really angry and disappointed is that no one is willing to address the smoking issue.

I took the opportunity when there was uproar about parking and parking provision to use this to voice my concerns about the smoking. I got in touch with various MSP’s and had some great feedback from them and help from them however I am totally disgusted by NHS Lothians response. They wrote a letter to my MSP which basically says what they do just now is enough and no more can be done. What they said they have done is:

  1. Provision of support for patients, staff and visitors who wish to give up smoking
  2. Provision of advice regarding medication which helps manage nicotine withdrawal
  3. Promotion of education and training for managers and front line staff in the implementation of the policy

What strikes me with these actions is that it is all about what they are doing to help those that smoke nothing is there to help those who do not smoke and are being affected by those smoking. The actions are also leaving it up to the smokers to get the help. They are not actually doing anything to stop the smoking in places that are meant to be no smoking. The letter also sited the design of the hospital means that people are likely to congregate at the doors to smoke.

To say I was shocked, appalled at the letter is an understatement. The over riding emotion though was disappointment. My MSP had put that one of the reasons for me not working at the hospital just now was due to the issue of people smoking but this was not even mentioned in the response. There was a line that said they were sorry I felt the need to report this complaint and they apologise for the distress and inconvenience this has caused. Distress and inconvenience is an understatement- they clearly have no idea about what going to intensive care is like, what fighting for your life is like and knowing that the very place that saves your life is also the very place that could take your life too.

I have no idea what to do now. Will I be able to return to work in the hospital if this issue is not resolved? I don’t think so. I love my job, but I love my life (most of the time) and if doing my job is going to kill me can I really justify going back to work.

I will spend as much time as possible to try and get this situation the attention it deserves because there is no way it can only be me that is suffering. There must be hundreds if not thousands of other people being bothered by this.

Below are links to some posts I have written around about the issues I have dealt with to do with smoking and people smoking on NHS sites.

23 days on and its only got worse is a post I wrote 23 days after the so called smoking ban came into force. It appears to have only made things worse. I am not one for advocating smoking but the removal of the smoking shelters has made things so bad.

Returning to work in a fog of smoke is about returning to work after having an asthma attack as a result of second hand smoke. Reading it back I get quite emotional as I was struggling to accept that I had done nothing to myself to end up with lungs like this- often I wish I had done something like smoked as then at least there is a reason for my lungs being so bad.

Smoking on hospital sites reflecting back and just finding the issue getting worse and worse. Also thinking of ideas of things I could do that would maybe have some effect on those smoking that they would not like much like their smoke has on others.

Bad weather makes smoking worse

Passive smoking what does it mean

The NHS long term plan

Parking is not the only issue at the RIE

 

The gift that keeps on giving!!

Many on long term oral prednisolone will be familiar with the saying that it is the gift that keeps on giving. It is the one medication that gives those who are taking it life but also results in many secondary conditions resulting due to the side effects and the prolonged side effects.

I have written before that I have a love hate relationship with oral steroids. My lungs need them but the rest of my body certainly does not. Recently I have felt that the prednisolone just keeps on hitting me in the face with one thing after another from destroying my adrenal gland meaning unless there is a miracle I will never get off steroids, my bones have been leached of all their goodness and now have osteoporosis, my pancreas is affected meaning I have constantly high blood sugar levels, I have had issues with my eyes as well but never to the extent I do now.

For a good number of years now I have had swollen optic nerves. This has not caused me too much bother other than some pretty bad headaches, these headaches have been getting worse and more often to the point a few weeks ago it floored me. I was in bed the entire day, feeling sick and being sick. I have not had a migraine before but thee headaches are what I imagine they are like.

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I went to my optician last October- I was early for my annual check but I kept getting blurred vision at night and the feeling of having a film over my eyes which no matter how much I rubbed them or put moisturising drops still did not ease the discomfort. At this appointment we discovered I was missing a large chunk of my peripheral vision. I did the visual field test a number of times but each time I kept missing a full 1/4 of the circle in my left eye. Obviously this is not normal so I was referred on to the eye hospital with the final consultant visit the other day. I have been having a variety of scans, tests and drops put in my eyes to try and establish what is going on and the appointment was going to be the reveal all and I was hoping it would be an easy fix and also (clutching at straws a little) it would be something other than an effect from the prednisolone.

Anyway I saw the consultant who needs to speak to another consultant because she doesn’t really know what it is that is wrong but there is something seriously wrong. This did not fill be with hope. You go to the consultant because they know these things and can tell you what is wrong but its more waiting for just now while she speaks to her colleague, she is also wanting me to have a head MRI so they can get a better view of things but Im not really sure how that will help them as I don’t think it will show them anything in more details than they already have but maybe it will.

The long and short of it is I have swollen optic nerves but also the outside of the optic nerve is being compressed so the middle of it is bulging out and there is fluid accumulating with it. They don’t know why or how. They are not convinced it is related to my brain as the headaches I get are not consistent with raised intercrainial pressure which is reassuring. So its back to the waiting game.

The Intensive Care Unit

I have written often about being admitted to intensive care or the high dependancy unit or being reviewed by critical care staff and it always something I have just sort of dealt with and not thought to much more about it. That was until last night. I couldn’t sleep for tossing and turning thinking about how many times I have been in ICU or HDU or had the threat of going there.

Why all of a sudden has it bothered me??

Yesterday was the first meeting of the Critical Care Patient and Public Involvement Group (which I will write more about in a post of its own). A room full of patients who have been in ICU or their relatives, Drs and Nurses from ICU and then researchers whose area is critical care.

Naturally when you have a group of patients together you are naturally going to ask how you are linked with the group and I guess what your story is. In the discussion part of it there were 2 other patients who spoke of their experience being in ICU and how it was awful, the worst time of their life and how the Drs and nurses saved their life because their life was in their hands. It was a traumatic experience for them and they have got through it. I heard the saying “surviving ICU” a lot.

“Surviving ICU” was what bothered me and kept me awake. I think maybe I under estimate how bad my asthma is or maybe how sick I get or how dependent on medical staff I am to get me better. I know that my asthma is severe and I know there are many more hospital admissions, HDU admissions or ITU admissions ahead of me and I think i sort of accepted this maybe. It was not until that group discussion that I realised just how traumatic it is, life threatening it is, and how it is not run of the mill to go in and out of critical care. At the time I was able to keep my emotions in check but when I got home and set up my nebulisers that it really hit me. The other people in the group had a one off experience, this is what ICU is meant to be like ideally a never experience but if it is going to happen then once is more than enough not once or twice a year sometimes more.

In my working life you hear about people going to intensive care, its not looking good for them or statements that you mainly go out ICU horizontally not vertically. I think for me I have always come out of ICU so would never dwell on the experience of being admitted. I cant say it is a pleasant experience not being able to breath and having the most toxic drugs that make you feel horrendous to make you better but it gets better, I go to the resp ward recover and get back home. It is how it goes and has been for the last 14 odd years.

So after that meeting and hearing others speak about ICU it has almost given me a fear. In the back of my mind I know there are only so many times you go to intensive care or high dependancy and get out but so far I always get out and sometimes bounce back but then get out again. I think it is the emotions that I could see on the other patients faces when they recalled their experiences that it hit me that maybe I don’t have the right emotion to it. The fear they had and the gratitude to the Drs for saving their life was clear to see. Its not that I don’t appreciate what the Drs do but I guess I just never wanted to admit that Im going to intensive care because its the safest place and I might just be that unwell that action needs to happen quickly. Every attack I have I am terrified that it might kill me and that asthma may just win the battle and Im sure I have surpassed that thought as it is very over dramatic and im young so it won’t happen but seeing younger patients have that fear of death and the unknown.

I have never really expressed my fears of my asthma to those close to me. I try to give the outward opinion that its fine, its life, its been long enough now I should be used to it. I would like to be able to have a conversation with people about asthma and death but would worry they think I am just being over dramatic and its never going to happen. Maybe I should though as a comment  that occurred really hit me and made me think about how those close to me feel and thought about my asthma and health. Recently a very close friend died, my mum was away, I was home but she read a text out loud and said “oh my god she’s died”. My step dad thought it was me that had died not the friend. This really hit me that if they hear something about someone dying they go to me and think it is me. I try so hard to keep well and take my medications etc but its still not good enough. I always knew they worried about me doing to hospital but never thought about the dying aspect of it.

What I find so difficult and I think it includes the whole critical care thing is that in the past I have been rogue with managing my asthma. I was young and didnt understand it and didnt want to accept it so I would increase medication so I could do something only to crash and burn and end up in hospital. That changed after a consultant had a go at me (they were just stern and didnt mess about but i felt awful so took it worse than had I been well) which I well and truly deserved but I stopped messing about and accepted not being well and accepted what I could and couldn’t do. The point I found so hard was that despite this change in behaviour and management I was still ending up in ICU or HDU but not having the good bit beforehand which I had before. To this day I still really cant accept the ICU or HDU admission for nothing. I get it if I was to go and play a game of football have a bad asthma attack and need critical care- I deserved it, I did something my body cant handle but now I try my best and still end up going there and that is the hard bit. Where before if I hadn’t been doing anything attacks would mean hospital and a respiratory ward where now it is resus, critical care and then respiratory ward. With this development what happens when it gets worse……

Lots to think about.

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.

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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Tired of this now!

After a busy time away in Manchester and having a bit of an attack on the train back up to Edinburgh I was ready to just drop in a heap and I did for a couple of day. Thursday and Friday I really didnt do much other than using my nebuliser a bit to try and get over this chest thing I seem to have caught.

Friday night into Saturday I really didnt feel great but thought it was just the weather because it was awful and it just kept changing. Atmospherics can really effect my chest so I thought maybe it was that. I went to bed early and was tossing and turning. I ended up getting up at 1 am and went to Tesco to get something to soothe me. I got some ice fruit stuff which kind of helped but I felt like the air was stuffy. I eventually settled after a few nebs about 6am but woke at 9am with my heart thumbing. It was going nuts. It was up at 140 and I honestly thought it was about to come out my chest.

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I called NHS24 which I always think is a bit of a gamble as I worry they will hear my history and will just send an ambulance. I had a really good nurse who I explained what was happening and was wanting to see if I could see a GP in out go hours to get some atrovent for my chest. I hoped this would mean I could stop the salbutamol an then my heart rate would just settle down. I saw a GP but she was worried as my heart was up at 180 and my breathing was not good- probably due to my tachyness. I have never seen a GP so worried. All set for a blue light 300 yards up the road. Thats happened. I felt like an idiot but then the paramedic was concerned and managed to get 2 cannulas in me. I was starting to worry myself at this point as I really didnt think I was that unwell and all I wanted was some atrovent. But my ECG was showing prolonged QT waves again so it had to be checked and we did need to get my heart rate down. By evening time it was down and I was home and could relax. Of course I couldn’t and was paranoid that if I moved then my chest would get bad and then I would need a neb and then I would make my heart rate go back up. It was down to a low 120 by the night.

Yesterday was the first time I have felt kind of scared as I had no control of what was happening and had no idea how to stop it. I know with my asthma I am in control (to an extent), I can ask for the nebs when I need them. I know what I can do and can’t do, I know how to sit to make it easier to breathe, but this was something different- there was no way to control it. It was out of my hands and the Drs hands to some extent as it was a bit of a waiting game to let the meds and fluid work to bring it down. It did scare me. I get scared with my asthma my it is a different scared. I am scared because I can’t breathe but I know I am in safe hands and will be ok- but this was different.

Sitting today reflecting back I am just fed up. I keep wondering what next is going to go wrong and will my body give me a break. I have been fairly well recently. I have not been in hospital nearly as much but at the same time I have not been doing as much. I thought my not pushing my body so much I would not make more things go wrong but maybe Im not right. Maybe it is just more challenges to try and over come. I am so greatful to all my friends who stick by me and give me wee messages of encouragement.

Back to work tomorrow after a week off but I feel I could do with more time off as just a bit tired after the last few days. What a way to end annual leave!!