The NHS Long Term Plan

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No one can have missed the news recently about the NHS Long Term Plan for NHS England. Even those of us not living in England can’t miss it!!! I know I live in Scotland so it does not impact me directly but I am pretty sure the Scottish Government will take on a lot of the plans for the Scottish Health Service that are talked about in the NHS Long Term Plan.

The biggest thing that I have noticed in the news, on social media from news agencies is surrounding smoking and the help that is going to be given to people who smoke that are admitted to hospital. Any time I see anything about the plan this is what I see and it just angers me so much. I know I am not alone either as have spoken to many people who are in a similar position to me with their lungs that are frustrated and angry about it to. For me what it me most was that along with the national news agencies and NHS health boards tweeting about it, my own local health board posted (once again) about how they were going to give smoking cessation help and advice to patients admitted to hospital.

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I know this is a very good step etc and that people who smoke should be offered help to stop however on a daily basis just to get into work I run a gauntlet to try and avoid breathing in any smoke. The NHS made a huge deal about how their sites were to be no smoking sites and that smoking is banned on their sites yet nothing is done to enforce this. They have signs everywhere yet those who smoke just stand by them and light up. Some don’t even wait till they clear the door before they light up. This is not unique to me and the hospital I work in. I regularly see on different forums asthmatics saying they had to go to hospital but just trying to get into the hospital left them in a worse off state than they were when they arrived in the car park etc because of all the smokers they had to pass.

Until you have put up the fight of your life just to get a breath in you cant understand what it is like. It is one thing when you may have been a bit silly and done something stupid which provokes an asthma attack but when you have done nothing other than try and get into work and you end up in intensive care it can leave you feeling really angry and bitter.

What I would love to see and so many would love to see is the smoking ban being enforced or at least a shelter to provide those who smoke a place to go and then leave areas such as the main doors to the hospital as a safe zone. Also when there are the groups of people congregating outside the doors of the hospital- many of whom are patients why are the smoking cessation nurses not down there encouraging them to not smoke or at least smoke in an area which won’t risk killing people.

What is worse is that the main doors to the hospital I work in which are always flanked by people smoking, are over looked by 3 of the four bedded bays in the respiratory ward so during sweltering summer days you cant have the window open because you end up with a room full of seconds hand smoke.

I am not alone in how I feel and what I think which is why I am writing this. I am at a total loss as to what to do because everywhere I try and get the issue addressed cant give me any answers. Is it going to take someone dying from an asthma attack as a direct consequence of people smoking outside hospital doors for action to be taken?? I have got in touch with ASH, Unison, local MP none of whom could give me an answer or willing to take action.

My working hours are 9am to 3:15pm, I have a blue badge due to the severity of my asthma so can park close to the hospital however I have had to start arriving earlier and earlier so I can have the time to wait till the doors are clear of people smoking and then take my chance. This time is different each day but it shouldn’t need to be done. There is then the reverse when it comes to leaving work however I tend to end up just trying to get out and get to my car, once in the safety of my car I can have some nebulisers to alleviate the effects the smoke has had on my lungs. I just wish those who smoke understood what they were doing to others.

It is so hard to see so many struggle. I have read how people feel like turning back and missing their hospital clinic appointments because of people smoking at the doors and the risk this poses to their health. This should never be a choice that someone has to make.

It would be great if others could share this and try and get change to happen.

If the NHS are committed to help people stop smoking, then they need to be down there with those who are smoking not up in offices making plans. Smoke is not just effecting those smoking but also others around them and not only those with lung disease either.

Please lets try and get things changed. I don’t want to risk losing my job (which could be a real possibility) because I have once again ended up in the intensive care unit as a result of people smoking where they should not be smoking.

#stopsmokingonNHSsites

So long 2018, Hello 2019!!

I started writing a round up of 2018 but gave up. 2018 was a mix of highs, lows and life changing experiences. I can split the year into 4 main themes: work, asthma, lacrosse and research.

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Work: I am really thankful I am still able to work. Albeit not as I would like but with my asthma and being in hospital I know how fortunate I am to have really understanding bosses who have made so many allowances and adjustments to my job to accommodate my tricky lungs. I love what I do and just wish my body would let me do more so I can do more for my patients. This might be the year, who knows what 2019 will bring!!

Asthma: 2018 was a rough year but 2019 has already been better as I did not see the new year in while in critical care!!! After a total change in medical and nursing team I feel confident in them and the relationship I have with them is really good. I have renewed confidence in my care, asthma and management. So here is to a great year!!!

Lacrosse: 2018 was busy with the senior Scotland team and they produced some of the best results they have off the back of a great World Cup in 2017. This year is the European Champs so I am sure the team will have another awesome tournament. I have been working with the U19 Scotland team too doing some goalkeeping stuff and helping them out which I love. If Scotland was not enough I started coaching at Edinburgh University now too. It is the first team I have been a coach for. It is the 3rd Team and they are an awesome bunch and have been doing really well so I hope they have a great 2nd half to the season too!

Research: It has been going from strength to strength. The more involvement I do the more I love it. What I have noticed over the year is the opportunities I have are more varied. It is not only reviewing things now but speaking about patient involvement, talking at national and international conferences, doing lectures and advising. I still can’t get over that an awareness video for world asthma day led to an invite to the Scottish Parliament for the launch of the Asthma UK Centre for Applied Research and then meeting those involved to then be invited to be part of AUKCAR.

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

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It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.

20 years gone too soon.

Its the 14th of December. A day that seems to come round each year all too quickly. Now it is not only one person I lost on this day but 2. There are not many days that you will remember exactly where you were and what you were doing but for me the 14th December I remember exactly what I was doing last year and also 20 years ago.

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20 years ago my Uncle tragically died. I remember it so well and I hate that I do. Me and my younger brother were at my Dad and Step Mum’s for the weekend. We all went to bed on Saturday night as normal. Early hours of the morning the phone rang and it was the call to say Uncle Dermot had had a traumatic brain injury and was down in Nottingham in the hospital on life support. It is so strange the things you remember, while Dad was making arrangements to drop us back off at our Mum’s and go down south, me and P were in the front room and he came out with ‘there would be no more Kukuri’s’. I have no idea why it stuck in my head. Uncle Dermot was an officer in the army and travelled far and wide. He had no kids of his own but would bring us gifts back from his tours. I think now they would for sure not let him give us things such as kukuri knives and other souvenirs from various countries. Dad took us back to Mum’s, on the doorstep I remember Mum giving Dad a big hug. I don’t remember my emotions at all really. I went to school as normal on the Tuesday and it was on the way home that I realised the enormity of what happened because it was on the front page of several newspapers with his picture which you couldn’t miss. We didnt spend a lot of time together as he was away most of the time but looking through his photo albums which he kept throughout this life as a sort of diary I realise just how much of packed life he lived. In a short 36 years he did some of the most amazing things. When he was home on leave he would always make time to spend with us.

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The comment that went with these photos made me smile. The first one was Dermot meeting me for the first time but keeping his distance. The second photo was ‘somehow ended up with babysitting duty’.

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This was taken before we left Granny and Grandpa’s when Dad got married to Carol. My second cousin Fio is the other person in the picture.

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Uncle Dermot with me and my younger brother.

I really enjoy looking at his photos. He makes me feel very proud that he was my Uncle. All he achieved is amazing. It is scary to think in 3 years time I will be the same age as he was when he died.

dDcNhrJkRVaw4BiAiXXDxA.jpgFor a few months I think Dermot was stationed at Edinburgh Castle. I recall thinking it was amazing that he was living in the Castle and was able to take us round. The stick my brother is holding is Dermot’s officers cane.

Not only did Dermot die on the 14th December but last year Granny also died. There is something rather special about her dying that day. I don’t think she ever got over Dermot dying. He was so young, how does a mother ever get over the death of a son. I don’t think you ever do.

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Since my Grandpa died I became a lot closer to my Granny, spending time with her, tasing her out to different places. Throughout all the troubles she always had my back and would look out for me. I never thought she was going to die when she did but there was something so peaceful about it. I got a phonecall about 3 in the morning that Granny was struggling to breath. She had a bad chest infection which was making her asthma worse. I went to the nursing home in the middle of the night and sat with her waiting for the Dr to come. She had some nebulisers and it settled her chest really well. So once she fell asleep I left and got some sleep. I visited Granny after work and she was brighter, and I wrote some more of her Christmas cards which she was desperate to get out but didnt have the energy to write them so I did them. An hour or so passed and she got tired so I left and posted the cards. Just over an hour later I got a call from the nursing home to say she had died. I was devastated- it was so quick, I had only been there just over an hour ago and she was chatting to me and now she was gone.

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(I love this photo of Granny aka Great Granny Annie proudly holding baby James)

I took a lot of comfort from her dying on the same day as Dermot died and also she joined Grandpa who she dearly missed as well. I do miss visiting Granny and all her quirks- she drove me round the bend a lot and could get so argumentative at times when I just give up and say yes!!!

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The 14th December is a day I find really quite hard but reflecting back on memories and the good times makes it that bit easier. I know one day I will join them as well and be reunited with Uncle Dermot, Granny and Grandpa.

I found this photo of Uncle Dermot in his photo albums. I love the silhouette and it reminds me of the soldiers who are gone but not forgotten. Uncle Dermot and Granny may both be gone but they will never ever be forgotten and Grandpa won’t be either.

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People with bizarre ideas!!!

My post on the 4th September 2018 focused on when I was going to see a change in my asthma control since starting mepolizumab. It was about the unknown because unlike salbutamol or prednisolone there is not an immediate effect, you have to be patient and allow the drug to work.

I get a lot of different comments left on posts but this one stood out to me as absurd and almost dangerous if read by someone who then went ahead and followed their advice.

PLEASE DO NOT DO WHAT THE PERSON IN THE COMMENT SUGGESTS. ALWAYS FOLLOW WHAT YOUR MEDICAL TEAM SUGGEST- IF YOU ARE WORRIED ABOUT YOUR ASTHMA AND TREATMENT SPEAK TO YOUR TEAM (CONSULTANT, ASTHMA NURSE, GP, PRACTICE NURSE) ABOUT IT AND THEY WILL WORK WITH YOU.

This is the comment:

When is it going to start working? So I am one of all and I were suffered from asthma. Ihad moderate asthma with COPD by PEF markers. My asthma symptoms were not too bad but everything went wrong when I took ICS inhalers. So I had occupational decease. Doctors did not cooperate with me and I made my choice. I began to take care for my healthy alone. The first step I have done – I tried to stop using all kind of ICS but doctors did not know about it. The prescribe me different kind of ICS. Sometimes I used only Salbutamol (Ventoline). Every drug has its side effects. ICS inhalers suppress adrenal gland hormones and related to its failure. Antidepressant drugs make patient more depressed and change the person. More than a year I do no use any kind of ICS or other drugs for asthma. I am healthy because I can do hard gym exercises and to build my muscles, to run, to cycling, to swim, to training a martial art – Aikido. I have no any kind of asthma symptoms. I found the way to cure successfully my asthma. So, I am ready to give some advises to help for you and every person with asthma somewhere on the world. My story is so long and I write a book about it. I share my advises in the pages and I believe that I can help for everyone suffered from asthma.

Sometimes I wonder about these sort of people and where they get their ideas from. No matter how frustrated I have got with my asthma care team there has never been a moment when I have thought I can just stop taking my medications and start going to the gym and I would be cured. Im sure everyone would love it if this was such a simple thing and everyone with asthma can be cured. It would save the NHS a lot of money for one thing.

Don’t get me wrong sometimes with asthma it can be so complex that patients do end up on a bit of a polypharmacy and you don’t know what is doing what so a regular medication review is always a good thing, but when managing asthma there is always the need for inhaled medication at some-point and I guess if the medication is not working then is it time for more investigation to see what is really going on.

It is a worry because this comment is not isolated. There are so many that crop up like that. Thankfully I have my comments to approve or reject so don’t show them as I worry who will read them and do what they suggest.

I wonder that those who leave such comments if they actually had asthma in the first place and are one of those in the statistics that were misdiagnosed and maybe had viral induced wheeze or cough.

I think my message is that if there is ever any doubt in your asthma, symptoms, medications please discuss it with your Dr or team and do not just stop things. This is dangerous. There is no doubt that exercise is really good for asthma and ensuring your lungs are expanding etc but for some exercise is dangerous and can exacerbate an attack.

Everything in moderation is the key to success.

Allergy Awareness for invited guests!!

QbMuE3QqTzyZhgs%nM6ZeQ.jpgYou may think why is there a picture opening this blog post. Believe it or not for this allergy sufferer (that’s me!!!)  I was given this as an allergy friendly alternative to the cake which was provided for the coffee break at a conference. I had gone over to ask if the cake was nut free but they couldn’t not guarantee this so they had provided Nakd bars as alternative. All I can say is thank goodness I did not take them at their word and also that I can read as the staple for these bars is nuts!!!

Since my asthma has become more unstable and through a series of complex testing which did result in going to intensive care once we discovered the aspirin allergy I have was not going to be reversed with desensitisation. In fact since that desensitisation I have found I have become even more sensitive to it and now have to be salicylate free (a compound of aspirin that naturally occurs in just about everything from fruit and veg to toothpaste). My main issues though are nuts, tomatoes, herbs, spices and chilli type stuff.

I guess I have had a bit of a bad run of luck recently when at events. 4 different speaking events in a row I was left hungry. Being hungry is not too much of a problem although one person I was in London with did complain that I was getting very grumpy as it was pushing 12 hours since I had breakfast and I think she was desperate to get food in me!!

When I am invited to speak at events one of the first things I check is how long the event is and if there are meals or a buffet etc. As I know allergies are a total faff, it drives me round the bend I am more than happy to bring my own food with me, especially if it is a buffet then it doesn’t look as strange when I pull out my own packed piece- I get strange looks if its a sit down meal and do this!!! If meals are provided I will always tell them in advance about my allergies and often ask what they have planned and I will say yes or no. I appear as a fussy eater but actually the one and only food I do not like and can almost say I hate is the potato (thankfully I am allergic to potato skin due to salicylic acid in it).

Recently  however at these 4 events which were all held by different companies and services I think I have had the worst experience possible. It has highlighted as well how little anyone actually understands food and food allergies- particularly those serving food.

The second of the 4 was in London and just after the teenager died from eating a sandwich from Pret and had an anaphylactic reaction. I would have thought there would be a heightened awareness of food and allergies particularly when they have been pre-warned.

A common theme that I have found is that those serving the food have no idea what it is they are serving. I will always ask what is in something when given it unless I have cooked it or have seen it being cooked. On these occasions no one could tell me what was in the dish they were serving, but they also were not for volunteering to find out what was in the dish which really irked me. I did say I was asking due to allergy which is why I needed to know but they seemed like robots just dishing plates out and not actually caring about what they are doing. I liken it to my job. If I am asked to give something to a patient I will ask what it is- I am talking about their meals not drugs here as can not imagine putting something down in front of someone not knowing what it was.

The major major thing though that is not excusable on any level and no matter how anyone tries to wiggle out of it there is no excuse possible especially in the food industry and it has happened at 3 out of the 4 events I was at. I will break it down into different parts first the menu, then the alternatives, then the guess work.

The Menu. Why now in the modern world do we insist on being minimalist on the menu. one event I was at had a menu which read something like this: baked cod, butter sauce with peas, plain boiled rice and mixed veg. When I looked into the serving dishes the cod was sitting there with peas but also samphire and some other green stuff and also had some sort of spice in it, the plain boiled rice was also not plain it had mixed hers through it and the mixed veg was more like a ratatouille (which I guess is mixed veg). I asked the man in charge of the food what was in the dishes and he directed me to the menu and said it was written there. Of course I asked where on the menu did it have the added extras that were clearly there but he could not give me an answer but did say several times I could have the plain rice. I wanted to shout that it was not plain rice it had stuff in it!!! That was the event where I didnt get to eat as I asked if there was somewhere close by to grab something to eat but was told no and that was it.

The alternatives. As I said above if your giving an allergy alternative make sure it is suitable. Part of me sometimes thinks maybe I should take them at their word and eat the “safe” alternative that they have provided- however due to the potentially catastrophic effects I never would as I value my life too much. I wouldn’t choose to look like this 4 days after having an allergic reaction.

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The guess work. I have had experience of this from servers, waiters, to catering managers. One event I asked the catering manager what was in what on the buffet as it was not clearly labelled and they just sort of waved at a variety of things one being satay chicken- errrr no. I did after that event get a very apologetic email from the person organising the event because they had specified my allergies and I should have had a separate plate prepared. So often though people say you should be ok with this- but should be is not good enough when it comes to allergies. I would prefer someone to say I don’t know but I can see if there is something else or even they don’t know but they don’t have anything else. Just be honest. The same occurred with biscuits at a coffee break when I was told the biscuits were fine for me to eat yet I broke in to one and there were whole nuts in it!!

I think what irritated me to most about all of these events was that I had volunteered to bring my own food but was told no and that my allergies would be catered for yet they were not. I could have been really annoying and made a huge fuss about it but I didnt. However as it happens more and more I am getting really irritated especially as there is so much in the press just now about allergies and people who have died as a result of mislabelled food or unlabelled food.

I also think I have been the invited guest to these events. I am giving up my time to come and speak to sometimes hundreds of people about living with severe asthma and allergies or patient and public involvement, I also travel to the other end of the country yet when it comes to making sure you are fed and watered it really does go by the wayside. After a few of the events I have had emails apologising for the lack of food options etc however it has never been from the caterers who really are the ones to blame. I guess because they got paid their buck they don’t care- I bet if the money was to be withheld they may take more note. Alternatively I could name and shame but I won’t be doing that as prefer education as an option. If it was to happen again with the same caterers then it would be time to step it up.

 

Trauma of ICU

Finally I am able to sit down without getting upset or terrifying myself about my latest hospital admission specifically experience in ICU. The photo below may not look like much and you may think its a window and building but this is what has caused me to much trauma.

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Before anyone reads on please note this is just my feelings from it and my experience. The staff: nurses, support workers, physios and Dr’s were all fantastic and could not do anymore to help me.

This admission has rocked me so much. A lot more than any other has and I hope that I won’t ever get like this again.

There was a series of events I think which led to it all becoming too much once I got back to the ward and I guess basically I just broke down with fear that my asthma will kill me.

The lead up to being admitted was really rapid, as I said in my previous post where I spoke about the admission and how it went broadly speaking. What I didnt speak about was the true mental toll it took on me.

As with any trip to ICU in the back of your mind you know its not good because ICU is the end of the road in terms of hospital care you cant get any more treatment beyond what they an offer. I have been to ICU so many times, I cant even count the number of times I have been admitted there and come out the other end.

Once up in ICU there was the usual battle of trying to get a arterial line in which again failed and we decided to stop short of a cut down thank goodness as this caused me to lose the feeling in my left thumb and part of palm. High flow oxygen running various IV infusions and I had this feeling of being safe. I was in ICU and would be ok. Next came review from the consultant who said if things did settle next step is being intubated and ventilated.  I have had the said to me several times so I didnt think much more about it.

It was not until I came back to the respiratory ward that mentally I really found it tough. After starting to feel much better and access being an issue I was keen to be weaned off some of the infusions I was on. This didnt go to plan and a few hours after I really didnt feel to great so I let them know. Junior drs came to review and were concerned. It was late on in the day and about 7pm my own consultant came round to review me- that in itself freaked me as he was not even on the ward team but he came through. He wanted everything put back to the previous doses, have a whole load of nebulisers and be moved to the high care bay for close observations.

It was the move to the high care bay that brought so much flooding back and I felt that I just couldn’t cope at all. I have been in the high care bay before and never had any issues. I already felt quite on edge because by this point I had been seen by 2 consultants out of hours who came to listen to my chest and see how I was, have all my medications increased again and being moved. The move was what was enough to tip me over the edge. Once moved and settled I looked up and out the window and could see the ICU. The photo from above is below and I have marked where the ICU is.

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The combination of what the consultant said in ICU, and then getting worse on the ward and having consultants review me when they would not normally see you come in to review you and then seeing ICU again and the Dr’s talking about taking you back there was just too much. I think it was also because on the ward I was on the maximum treatment for my chest and just not getting better. The consultant was worried because I had been given 36mg of salbutamol via nebulisers with little effect. Thankfully they kept persevering and my airways did slowly start to open and breathing became easier.

Its fine when you are acutely unwell and everyone is buzzing around you making sure your ok, listening to your chest, giving you nebulisers, doing your observations you dont get much time to think or worry about not being able to breathe. Its once your that bit better and left alone and normally left with the parting words- “rest and try to get some sleep” and the lights go out. That is when it hits you. Still feeling not great and still finding breathing a real challenge sleep is the last thing you are able to do. Its a very strange feeling when you are so exhausted you want to sleep but scared to sleep at the same time. Being in the dark makes everything much worse and I just got so scared. I couldn’t help but break down. I was able to speak to a nurse but they could not offer much as its not like there is a magic pill that makes fear go away and because of my chest not being great they cant give you anything to help you sleep. At night with less staff around at night they don’t have the time to stop and speak to you and make sure your ok. but at that time it was all I wanted. They did then send a nurse practitioner up who was great but even he said that the psychological support at night was awful and as nurses we are not good at dealing with things unless numbers tell us something.

Over the course of that night as my chest came and went some nurses kept coming and saying to me all my numbers were looking better so I am doing ok. I think this is one of the statements I hate more than anything. I don’t care that my numbers may be ok or better I still feel like crap and having good numbers does not help with the crippling fear I am experiencing.

Once morning finally came around I felt really stupid for getting so upset but was able to have a chat with the Dr about it. I knew it was a vicious cycle of being upset, makes my breathing worse, which makes me more upset as I get scared it means going back to ICU but it is so hard to get out of that cycle.

The fear of what happened is still plaguing me. More so than normal. I can rationalise going to ICU and the need for their help but this time is just different and I cant get it all out my head.

I am a week out of hospital now and really feel like I am no further forward than I was day 1 post discharge. Everything feels just as hard. I have no idea why. Part of me wonders is it because of the biologic therapy that is making it harder to recover or has this all taken a much larger toll on me than I expected.

I have clinic next week and I hope to go through everything with my consultant and make sense of it all. I also hope he will have a reason for me feeling so rubbish despite being home from hospital.

I think this whole thing has just highlighted that no matter how many asthma attacks you have, or how many hospital admissions you never know when you will hit breaking point or when you just cant keep fighting.