The uniform that saves me, is it drowning me at the same time?

Since my attack at the end of November/ December I have really struggled mentally and physically. The initial recovery was good, my lung function returned to my normal fairly quickly and my energy stores were up, I was able to get about and get on with my daily routine without much limitation. Reducing steroids was a bit hairy but with the help of my consultant and asthma nurses we managed to keep on top of things although the reduction has only got as far as 30mg but hey its better than 60mg.

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I was confident this speed of return was due to the new treatment I am on but now I am not sure. I think a lot of it probably was at a basic level. The treatment helped me get back to my baseline to function quickly but Im not sure it got me to the baseline for work. I was excited to get back to work but I wonder now if it was too quick and the timing didn’t help. Looking back now despite reduced hours apart from the first week I was never able to get away on time because there were patients who needed to be seen and I was the only one about. I already arrive 30 mins early for work (this is my choice) because I have worked out that this is when there are the least number of people smoking outside the doors mainly due to breakfast and drug round on the wards! Many say that I can get the ward to see the patients etc but being a patient and having had this done to be it breaks the patient nurse relationship and you lose confidence in them so for me it is not an option.

But i now need to put my own health first. I keep going round in circles with it and I love my job and love working with the patients etc but then I get my body into such a state and I often don’t realise it until I am told. Last week I noticed patients commenting on how awful I looked and should I be in work, the people I was in the lift with would ask if I was ok because I was so wheezy, the finally after spending a weekend in bed and thinking I felt better I went into work to be sent home by one of the other charge nurses because I felt so awful and sounded it.

Part of living with a chronic illness is that you don’t often know how bad you are feeling until your on your knees. I know a lot of patients have said the same that they didnt realise how unwell they were until we got them on a treatment and it is once they are established on this that they really see how unwell they were. I think is how I feel that things just decline slowly and it takes a huge attack or event to stop the downward spiral and start getting better again.

Going back to the title of this post. I love putting on my uniform, I worked hard to be able to get it and then be able to keep wearing it. It is also the uniform the nurses who look after me wear as they get me back on my feet and my lungs working a bit better. But then I also wonder if my drive and love of work is also what is causing me to not get to my full potential of wellness. I am really torn with what I should be doing and need to stop and evaluate what is important to me and what is in my best interests.

I have an appointment with my consultant this afternoon where I am going to ask his opinion as I really cant continue as I am. I am back to the point of living to work and that is it. I love my job but need to have more to life than work.

I wish my lungs felt as good as these ones do!!!!

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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

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.

New drugs, new start?

I haven’t written in ages and I apologise for that but I really did not know what to write and how to write without getting myself angry and upset as I feel the last 8 years have just been a total waste.

I wrote a while back about changing consultant and hospital because I was really finding the relationship I previously had with my consultant was no more and my health was getting worse, I was getting put on more and more drugs and constantly riding a rollercoaster of feeling well and being on high dose steroids to feeling rubbish because my steroids were reduced.

So lots has happened since switching consultant. My first appointment I finally felt someone was going to do something to help. I was put forward by my consultant at their MDT meeting to see if another consultant would agree to me being a candidate for mepolizumab. Due to the cost of the drug you need meet certain criteria and have a second consultant agree to it. Thankfully another consultant agreed and the wheels were in motion for me to start.

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I didnt really know what to expect. Its not like other drugs you get by injection like any sickness or steroids where you notice a difference pretty quickly. This one it can take a few weeks before you notice positive effects from it but Im not sure what I will feel and what the positive effects will be. Will it be the nights are better and I won’t wake up so much needing meds or will my peak flow be increased or able to do more during the day with less symptoms??

Time will tell how it goes. For me because of the steroids I am on they are going to use my maintenance dose of steroid a marker for effect of the mepolizumab so if I can reduce this then we can move forward and continue on the mepolizumab but if I cant reduce them without my chest getting worse then I won’t stay on it and will be back to square one and trying to find something else to help me.

Speaking to the nurse they seem to have had really positive effects and not many people have had to stop. Also the side effects have not been too bad apparently. A bit of a headache and back pain seem to be the most common. My head has been killing me but it is easing off and if that is the only side effect I cant really complain because a headache is the least of my worries as the pain and suffering from my chest over all these years far out weighs a sore head!!!

There is deep seated feeling of anger in me which I need to get over but I just cant shake this feeling of having wasted my time with my old consultant. Everyone told me she was the best but I guess the best is not always what works and it really didn’t for me. I asked so often to try different things anything to try and get some stability even asked to stay on the higher dose of steroid as I knew this was what my lungs were happy with but it was always a no and just had to persevere and would get there. Clearly that didnt work as every attack I ended up in ICU or HDU and so much time off work. If it was not for understanding bosses I would be out a job and have no purpose or aim to try and get myself well. I am really angry that it took a horrible admission to hospital and me essentially getting so upset that I was getting no where and people asking me if I had tried x,y and z and all I could say was no and they look quizzically at me like I am mad because my asthma is so uncontrolled yet I have not even been considered to trial some of the more medications till now.

I need to keep myself grounded though. Even though the results of this drug in others has been fantastic I really don’t want to be disappointed and pin all my hopes on it to then be totally devastated that it doesn’t work or it doesn’t work well enough to justify keeping me on it. Even with the best results there can be from the mepolizumab my lung issues won’t totally be cured as the years of uncontrolled asthma have caused a lot of airway remodelling and scarring which cant be reversed.

Fingers crossed the next three months are full of good things and I can stay on the mepolizumab as I desperately want my life back or even just some of my life back where I don’t have to spend all the time I am not working resting to make sure I am then able to work the next day.

Will keep updating as I go and if I see effects from it.

Snow week: lessons learnt

This past week the UK has been hit with some awful weather. In the whole scheme of things around the world the weather was not too bad compared to the likes of Canada but the snow fall was enough to bring the transport system to its knees, shops ran out of food, no milk could be found anywhere. The entire country was suffering. Mainly the suffering came because as a country we are ill equipped to deal with any snow other than a light dusting.

Schools were shut, offices were shut as well, public transport couldn’t run. If you had any vehicle other than a 4×4 you would struggle to make even the shortest of journeys. The news bulletins spoke about the red warning where only essential travel should be done and if possible everyone should stay at home. This is all very well if you have an office job, or work in a shop. When you work in an essential service like the police, fire service, ambulance service or in the hospital there is no snow day for you. Health doesn’t get better or standstill and wait for the weather to get better so people can get into work and get their job done.

As I work as a nurse we don’t automatically get to stay home because the hospital never shuts, healthcare continues. I was fortunate that I have a 4×4 so I could move around the city with relative ease however I heard fo colleagues taking 3 hours to get to work as they had to walk the 8km to get in while dealing with blizzard conditions. I could only commend those who put such effort in. I could do my bit and take the night shift from the renal ward home and pick up some people who were stranded on their way to the hospital. It was a great sense of team work and really what the NHS is about. As I walked through the ward there were Dr’s taking beds helping with washes, consultants taking bloods and everyone just mucking in to help. Some nurses were staying in the hospital over night to ensure they could work the next day. I have utmost respect for those who did that.

For me my role in the snow was returning to a role I loved. In our department we have a certain number of patients we have to see everyday and set their dialysis machines up at home. Since my breathing has got worse I have been hospital based and not been able to visit patients at home but for 2 days last week we had to use my car to get to patients as the pool cars which are Vauxhall Corsa’s didnt stand a chance in the snow, so for me to drive and allow the nurses to get the machines set up was a no brainer. I was able to pop in and say Hi to some of the patients who I haven’t seen in ages which was really nice.

I have mixed feelings now about the snow melting. When it was really snowy my asthma was a little better as the air felt so much clearer and fresh. That damp feeling had gone but as the weather improves the damp feeling has returned and breathing is not as great.  I m also glad that the snow is melting because I was having to do a lot more hours than I had previously been doing. I was essentially working 8-4/5 rather than 9-3:15. At the time I didnt feel like it was  a struggle however this weekend has been a right off. I have felt exhausted. My chest has been bothering me. I haven’t been able to sleep because of my chest and I really do think it is a mix of doing a lot more at work and the change in weather. I need to remember this feeling and ensure I don’t forget why I am only working shorter hours than I had previously. Part of me always wondered if I would be able to work longer hours but this has confirmed that I really cant. I wouldn’t change what I did at all but it is something to take note of.

Leaving from work on Friday late afternoon nearly caused me a huge problem and I was so thankful that I have a portable nebuliser which I could use. I do go on about smoking and the effects of people smoking has on my chest but the snow days have been even worse and made it very dangerous for me essentially leaving me questioning why I continue to try and keep working when just getting into or leaving work can pose such a risk (but that is for another post).

Fingers crossed this week everything will return to normal, public transport will be back up and running and the snow will melt away without causing huge floods around the city and country.

Taking time helps to heal

The first week of annual leave I really felt a little bit of a mess and just didnt know what to do with myself and everything seemed really negative and falling apart around me, but a week in and half way through my annual leave I feel things are starting to get back together and I feel much better for it.

I have had time this week to sit, think and evaluate what it important, what I should prioritise and what I shouldn’t but also to look at what is important to me both in terms of what I like and want to do but also in terms of what is going to keep me healthy and well.

I didnt go to the World Cup to volunteer and to say I was down in the dumps about it would be an under statement. I didnt think I would feel as down about it as I did. It shocked me just how much it effected me but its been for the good. I have been able to watch all the games live over a web stream which if i sit back and think about it I wouldn’t have got to watch all the games if I was there volunteering as would be working and doing stats rather than watching the lacrosse for sheer enjoyment and trying to work out plays and watch how decisions are made and coaches change their tactics according to how games are progressing has been great fun so there are positives of not being there.

I also got a lovely message from the Scotland team today as well thanking me for what I have done which brought a wee tear to my eye. That team are a really special one and each member I really value and glad to be part of their prep to the World Cup so I hope each and everyone of them is enjoying the experience.

This next week I am going to London on Sunday and doing a talk along with some other bits and pieces then coming back home again.

I will be able to spend the rest of my time up north at the cottage for a few days working on various bits of research I am doing and have a new role as part of a patient advisory group for the European Lung Foundation too which is exciting. I am already a patient advisor for a study they are leading but really looking forward to something different with this role.

I thought the 2 weeks were really going to drag as I wasn’t doing what I had planned a while ago and I sort of put it to the back of my mind my annual leave as I knew thinking about it would also bring about thoughts of what I should have been doing but wasn’t able to but I have had so much support from friends that the week flew by and I am sure the next one will to and I will be moaning about wanting to be back on annual leave rather than working!

I need to do some resting as chest wise its been a wee struggle this last week more so than has been for a while but I think thats because the weather has been quite muggy and humid never an asthmatics friend! So hopefully the rain that is pelting down just now will clear the air to make for happy lungs and happy breathing!!!!

Happy Birthday NHS

Today 69 years ago the NHS was created. A vision of the government and Clement Attlee which would provide a unified health service available to all. The campaign and implementation was spearheaded by Nye Bevan who can be quoted saying:

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I really do owe everything to the NHS and it is scary to see how the Conservative party are really making some difficult choices and actions which are really putting stress on the NHS which is a health service already on its knees.

It is a huge compliment to Scotland whose health service is by no means perfect but reading tweets this morning which said the Scottish system should be the road map for the health service in England, with that being said in newspapers headlines were slating the Scottish health services and hospital due to the number of beds being blocks and operations being cancelled. Its tough to see as I am both a service user of the NHS and employed by the NHS. I have also had experience of the NHS in England and there are huge differences which could be down to those who run the systems- the Scottish Government and British Government.

As an employee of the NHS I must say it is a fantastic organisation to work for. I have been very fortunate in my treatment by the NHS, I have a pension with them, receive a wage and have the support of colleagues but it is so hard to sit back and watch as wards are under staffed with not enough nurses, drs, domestics, care assistants and everyone is run off their feet all the time trying to cater for the needs of everyone else but not able to take the time out they need. NHS nurses have been subject to a 1% pay cap (along with other professions) which has crippled a lot of nurses who have families, mortgages and just trying to cover their bills. The 1% cap being lifted would make a huge difference because it would not only makes nurses lives more comfortable but it would be their effort recognised and help them feel valued in what they are doing.

As a user of the NHS and dependent on the NHS I really value them. I have gone from growing up in Scotland where because I was in school and under 18 I got free prescriptions so didnt need to rely on anyone for my medications and inhalers. I was guaranteed to get them no matter what. I then went to living in England being self sufficient and having to budget to include my growing medication list. At the time the cost of a prescription was £7.20 per item. It has gone up a huge amount now but this was about 10 years ago. I was on a huge number of medications and often needed multiple prescriptions of certain medications. It became a budgeting nightmare. I was fortunate that I was able to buy a pre-payment certificate so for £110 every year I was able to get all my prescriptions covered with it. Now living in Scotland prescription charges were scrapped which for me has been a real benefit as I have so many medications and currently have 32 regular items on my repeat prescription which is the medication I need every day. While free prescriptions for me are great I can imagine them being abused for some people who will go to the GP for something and get a prescription rather than spending the money themselves. A number of medications which people get on prescription could be things which can be bought over the counter but because they are free on script they go for that option putting more stress on the GP system.

I have also had some outstanding care from a variety of medical professionals. All hospitals across the UK have been great. The care I can’t fault especially when I was in hospital in Winchester and having my consultant from Southampton driving up after he finished work to review me as we were struggling to get control of my asthma. It is things like this that stick in your head and you won’t ever forget. Its also nursing care too. I can remember being in the resp ward Shawford Ward after coming out of ICU but finding it hard to breathe but being too terrified to go back to intensive care, but a nurse from ICU came to sit with me and go through why I didnt want to go back and reassured me it would be ok. She didnt have to do that but she did and it made a difference. It too sticks in my mind and when looking at the prospect of going to ICU I do think about that time. Not all hospital experiences are good and there are times when you do have bad nursing or bad medical care but its going to happen when services are stretched to the point of breaking.

It is scary to think that we really could be facing a time without the NHS. Im not sure how I would survive without them. They have been there to pick up the pieces when my asthma has kicked off. Looking at some numbers a night in ICU costs £2000 approx. I spent 4 nights earlier this year. I wouldn’t be able to afford that if the NHS is privatised. £500 approx for a night stay in hospital. I was in hospital for 3 weeks earlier this year. I would need over 1/2 a years salary to cover my hospital stays not including the added extras like x rays, bloods, IVs, drugs, food to name but a few.

I owe my life to the NHS as do so many other people but with so many people abusing the NHS and going to hospital for a sore tummy or headache, or cut finger when not needed is crippling the service. As a nurse I can’t say to people why did you bother going to the hospital because this could have been dealt with at home, we have to smile and provide the care we would give to other patients and hope their Dr will discharge them when required so the bed can be opened up for someone who really needs it. I often question going into hospital and calling an ambulance. If I can I will drive myself to hospital but am often told I was stupid for doing that and should have called an ambulance because people who were a lot less in need would call them but I feel if I am able to get myself there thats what I should be doing and if I can deal with my asthma at home then I should and do all I can to stay at home so to ease the burden on the stretched heath service.

Please stop and think if you do need the GP, or hospital or prescription. The NHS is on its knees but as a country we wouldn’t be able to survive with it and healthcare would not be accessible to all as it is now.

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