BLF-AUK Respiratory Action Plan Meeting

I was recently at the first event since the partnership of  Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this event as I didnt know anyone however as soon as I walked into the room I spotted a familiar face Dave from Chest Heart and Stroke Scotland who had attended a PPI event I was teaching at. As more people arrived I then saw Toni (a fellow patient) who I got to attend the Garden Party with which was good too but actually by the end of day I was able to speak easily to so many people and have come away part of a whats app group.

The table I was on turned out to be one full of severe asthmatics (not done on purpose all by chance). As we got talking it was amazing speaking to others who have had the exact same experiences as I have and the way you feel as well. I think the biggest thing for me was that you would not be able to tell that any of us were seriously unwell and that 2 of us have had far too many intensive care stays to count.

One thing that did come up several times in conversation was around the term severe asthma and what it means. We all came to the conclusion that severe asthma is almost a totally different condition than asthma is but this is for another blog post.

The main point of the meeting was to discuss certain points of the Respiratory Care Action Plan which has been drafted by the Scottish Government however they have one huge fundamental flaw. They did NOT consult with those who have or are affected by respiratory conditions, so the BLF-AUK held a meeting to discuss key points which need patient in put on. In the room there was a mix of people with different respiratory conditions.

One part of the meeting that I found frustrating was that it became a bit of a platform for people to spout their complaints about their GP and how they never get to see their GP or if they want to see their GP they have to wait. This is just the way it is now but moaning at events like this is not going to get anything changed. The GP system is not ideal but there are so many who are not using the GP correctly like with A&E so that others miss out and suffer as a result but a consultation on a action plan is not the time to complain.

Asthma I think and I may be wrong is unique amount respiratory conditions because unlike other conditions which mainly affect the older generation asthma can affect anyone young or old. In the room everyone was much older than those with asthma. The other thing that made it unique is that unlike COPD asthma is not really a progressive disease. It goes through phases of being controlled and uncontrolled but generally won’t continue to get worse as you get older limiting your ability to function. So the needs of those with asthma are very different to those with a constrictive airways disease compared to a revisable airways disease. I think those with asthma in the room were able to speak up and give a good balanced argument for our opinions and why us as asthmatics think as we do.

I did get very frustrated when asking a few questions to be interrupted by those with COPD who clearly has no understanding of any other condition outside their own so would butt in with their opinion and how I was wrong. The one that got me really riled up was discussing spirometry. I asked what they meant by spirometry to the facilitator as it was a broad term and encompasses a number of different tests. The context of this question was on the background of spirometry being used in primary care. This person jumped in and would not let me explain what I meant  and told me that spirometry is blowing into the machine when you sit in the glass box. I was wanting to know if they meant basic lung function by doing speak flow, or FEV1 or more advanced lung function tests given that the context is primary care. I was just really annoyed that some people were not given the chance to ask their questions or finish asking their questions without people butting in. The whole purpose of consultations and being involved patients and the public is to listen to each other and accept each others views wether you agree with them or not particularly when it comes to a variety of different conditions especially when we are all experts of our OWN condition but not in other peoples conditions.

The whole day was really good and I really hope the BLF-AUK got a lot of helpful information to take back to the government about their action plan and hopefully make some changes now that patients have been consulted. I look forward to seeing the result and to see the finished Respiratory Action Plan. If anyone is interested in giving their own feedback on the action plan they can do that here .

 

 

Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!

How do you get used to to living in a state of instability?

You don’t….

I like my life to be quite ordered. I like to know what I’m doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not to bad but the last month I would say it has been teetering on a knife edge. Never quite knowing when things are going to tip but desperately hanging on.

It is that very difficult period where your just sort of suffering. The nights are long and a little frightening as my asthma always gets worse at night. I finish work at four and have often been in bed by 6 using my nebulisers but just exhausted from getting myself through the day without getting sent home or worse ending up in A&E. Part of me wants to just hold my hands up and admit defeat but I can’t. I have to keep going.

If I am honest I feel alone just now. I sort of feel like I am on my own with this horrible condition even though I know Im not. I have lost a lot of my vital support networks which I didnt realise I heavily relied on even when my breathing is good. Matters out with my control have meant that to protect myself I cannot show true self or leave myself vulnerable to others, in doing this I am protecting myself but I am also isolating myself and I hate this. I loved being part of the support groups being able to help others and receive help and support myself too.

I really hate asthma just now and how little it is understood.

If only it could go away or a cure could be found soon. I try to be strong but today I can’t be. Today I want to hide in my flat and curl up in bed.

One of the other things I hope that by just not doing anything this weekend is that I still have a massive fear of going to A&E again. The fear of not being listened to is still fresh in my mind and that resulted in me going to intensive care because a nurse thought he new best, I was young and was not that bad. I hate to think what would have happened had I not had my own nebuliser with me and had I not know my own chest. I mean even with my own actions I couldn’t stop myself ending up in intensive care and this really terrifies me. I fear that I will end up being looked after by the same nurse again, it may be an irrational fear and the chances are slim but it is still there in my mind at was was already a scary time and it was just made worse. As a result there has been times when I may have had to go to hospital but did because I just stayed at home and would do back to back nebs- maybe more than I should have but the fear was paralysing and I can’t explain that fear to anyone.

I have to look at the positives though. I have had the most amazing summer doing things I never thought I would have. I made some awesome friends and played more lacrosse than I could have dreamt of so while I don’t feel great I can sit and look at the photos and memories of the summer and smile knowing that with hard work I will be able to do this again!!

long time no writing but now an explanation.

The last week or so has been one which has been great meeting new people but also one of the toughest weeks of my rather short career. The blog post following this will be why I have had the chance to meet and make new friends, as well as have a great experience doing something I love. However this was all marred by some news I received that no one ever wants to receive especially when you are a nurse.

Essentially someone has a some reason to hate me and I’m not sure why I have been the target of the hatred but over the last year I would say it has caused me a huge number of issues. I never thought someone could stoop so low as to write to my health board reporting me for allegedly doing something I shouldn’t (I am not putting the exact details here as I have taken this matter to the police). But I hadn’t thing to fear as I knew I had done no wrong and not done what I had been accused of but it has been extremely hurtful leaving me questioning everything I do.

 

Having brittle asthma I find I can become very isolated when I don’t feel well. I find. I don’t want to go out a much through sheer exhaustion and fear of having an attack and being stuck. Keeping this blog helps but also the online community of support is something you rely on but over recent times I have not been able to use this so much for my own support because of the fear that the person is using a fake account and seeing what I am posting and because of their actions over the past I really don’t want them knowing anything about me or what is going on. It is bad enough that we both have the same consultant and team but I want to limit the risk of having any contact with this person. It has got to the point I am considering changing consultant which is something I really don’t want because my current one who I have had and known for years now has helped me so much that losing that would be a step back as I’m sure I would never find someone as good and who I would have as good a relationship with.

I feel like I’m always looking over my shoulder and second guessing myself. It is the worst thing imaginable. It has made me question where I am living, working and also the voluntary stuff I do with both Asthma UK and the Asthma UK Centre for Applied Research. I love my job, and the things I do outside of work but the fact that someone is prepared to try and jeopardise that is disgusting.

I am so greatful to my boss for making me aware of what has happened but at the same time I wish I didn’t know. One minute I’m glad I know as I can take things forward and put a stop to everything once and for all but other times I just want to crawl under a rock and pretend it’s not happening. I really wish I could put it out my mind and forget it is happening. There are times when I forget about it but then the long hours in the night when I can’t sleep I end up turning things over and over in my mind and possible things further than could happen or they could try and do to me.

The stress is really not good. I have had to increase my oral steroids because I just can’t settle my chest and I have so much on just now. Things with my asthma were going not to bad but now it feels like a bit of a slippy slope down hill. I feel like I just can’t hold on to it all just now.  Hopefully soon it will be over and I can be left to just do what I have been and go back to enjoying life again.

Spoke too soon!

I spoke too soon.

I wonder if I tempted fate by getting excited about the recent success of my oral steroid reduction. I felt not too bad after the first few days after I reduced but I then started to feel not great. I can’t put my finger on what it was exactly but I just didnt feel right. As the days progressed I felt more unwell. I can only describe it as having the flu but without the fever. I felt so lethargic which was not resolved no matter how much I rested, all my muscles ached and my restless legs was beyond unbearable. Even driving my car for a longer journey than my commute to work would set them off and I would need to stop the car get out and move around. I also had this feeling where I couldn’t tense my muscles enough. I had the urge to tense them but was tensing them so hard that I would induce cramp. I was also feeling really sick and had a constant headache as well as a fair bit of weight loss. I put the weight loss down to the reduced steroids therefore the reduced steroid munchies.

I needed to put my mind to rest so I emailed my consultant about how I felt. I was really nervous as I thought I was perhaps just over reacting and being hyperchondriacal. I so want my reduction to be successful that the slightest hint of something not being right I am over scrutinising it and wondering what it could be.

I was nervous when I saw my consultant had replied to my email. I had a weird feeling in my stomach and part of me didnt want to open the email incase she told me to stop being silly and I was fine. All was ok though. She said the things I am feeling are more than likely related to the reduction rather than anything viral or anything else. This put my mind to rest. I was relieved I was not over reacting.

My dose has gone back up and I just need to wait for my signs and symptoms to go away. Never thought I would be so pleased to take more prednisilone.

For years I have been wanting to reduce and then come of prednisilone and just as things are going well my body throws a hissy fit and the one thing I was is to increase the dose again. Im not sure how I feel about it. Part of me thinks it is failure and not able to once again stick to a plan we had worked out for steroid reduction but then another part of me doesn’t feel surprised as all previous attempts have failed so why should this one be ay different. I now need to pick myself up and start again. I am not going to give up and determined to get to my end goal.

All this time spent feeling lethargic I thought I would have been able to do some more of my work for the research centre and also write an article for the Journal of Renal Nursing but my mind has been tired as well.

My short term plan is to just rest and not focus on the failure of this reduction but get myself back to a point where I am wanting to reduce them again. It is frustrating but I won’t give up.

“Asthma charity may quit Scotland in London office switch”

I hummed and hawed about this post and how to write it and what to write. I don’t think I have ever started and restarted a blog post so many times trying to find the right was to express my thoughts.

“Asthma charity may quit Scotland in London office switch”. That was the heading of a front page article in The Herald on the 23rd July 2015. As it turns out the article was speculating and making suggestion that the Asthma UK office in Scotland may be closed and those with asthma in Scotland would no longer have someone in Scotland ensuring that asthma is recognised and on the agenda not only for the NHS but also for the government.

As it turns out the article is effectively a lie. The suggestion that Asthma UK is considering shutting its Scotland office is false. The decision has been made- they are shutting the office. For me personally I am devastated hearing this news. Not only am I devastated but I am also angry. Asthma UK Scotland has had such a big part of my life and helped me so much particularly recently when I struggled to come to terms with just what my asthma was like and how it was effecting my life. The people in the office made so many opportunities  possible for me. If it was not for the invitation to the launch of AUKCAR by one man my life would be really different. I would not have the understanding about asthma, the knowledge of research and the research process but more importantly I would never have met the individuals who really want to make a difference to the lives of people with asthma like me.

I really am saddened at the loss of a great bunch of people who were such an integral part of asthma in Scotland. There will be a big hole left. I know so many will be feeling such a wide range of emotions- I have gone from saddened, to anger, to a sense of grief and fear. Why fear- I am scared that asthma in Scotland will be forgotten. It is such a big part of the lives of so many and the Asthma UK Scotland office kept asthma on the agenda and made sure that the health service, the scottish parliament and anyone else who could influence change were always aware of the devastation asthma is causing where is really should not be. Asthma shouldn’t kill, it shouldn’t hospitalise so many and it shouldn’t dictate peoples lives.

I am fortunate that I am surrounded by people who care about asthma and want to help people with asthma. I am part of AUKCAR and being part of that I can see first hand the research that is taking place to make developments but I am in a very special position. Before being part of AUKCAR I looked to Asthma UK Scotland and relied on them for advocating for us. It worries me that despite the newspaper article saying the offices in London will look after us in Scotland  I sadly won’t believe it till I see it. Having felt let down by them before I have in the back of my head that this will happen again.

When was I let down?? I always used to help out at events in Scotland particularly those in Edinburgh. I would be part of the cheer team during the half and full marathon. I cheered runners on as they raised vital money for asthma research and support for those with asthma. I ran the half marathon for Asthma UK in Edinburgh. I was looking forward to the event. I was also looking forward to see those from Asthma UK support their runners like they had before. Water station after water station I kept looking for the distinct lime green and purple but never saw it. There were many other charities lining the streets but Asthma UK was missing. I did not let this phase me but I was pretty upset that after all the times I have turned out to help they were not there when I ran. I asked why and was told that they don’t get a lot of support in Scotland and not many people taking part in events so it was not beneficial for them to send a support team. I volunteered several times to hold a cheer station and would attend different events for the runners raising money for Asthma UK but events were all run and organised by the London office. It appeared to me they were not interested as I never had much response at all from London. I would have thought they would jump at the chance for people volunteering to do something. It is not like they had no runners either. There was a huge number and I would see a lot of Asthma UK running vests who could have done with support. This previous experience as trivial as it may be has given me a predetermined expectation of what support Scotland will get.

One of the vital things we have here in Scotland and more importantly Edinburgh is we have the opportunity to attend cross party group meetings for Asthma where politicians will actually listen to asthma and lobby parliament for things and make sure asthma is not forgotten.

It is with a really heavy heart I say goodbye to Gordon and Karen (and Shona also). You will be missed a lot. You have done so much for people with asthma in Scotland. You have our support and I hope whatever you do next you continue the fantastic job you have done for us here in Scotland (even if we do stress you out etc!!).

Im left with a lot of different thoughts and decisions on ideas I have personally for asthma in Scotland. A few are: Will the cross party groups continue or how can we sustain them? Is there a benefit to set up my own charity for those with asthma in Scotland? Will Scotland become a forgotten entity much like the forgotten generation?

I realise this is a very one-sided opinion and view. I know it is not only Scotland that is going to suffer but Scotland is important to me and I am sure those in Wales will feel the same about Wales.

I found this so difficult to write mainly because I am so aware of my role in the Asthma UK Centre for Applied Research which I love and therefore have to work with Asthma UK but I also feel deeply let down by them and need to express how I feel as I am sure (in fact I know) I am not alone in my feelings and thoughts. Only time will tell and I hope Asthma UK prove me wrong and support Scotland just as the Scotland office has done on so many occasions individually but also for all with asthma in Scotland.

 

Up hill battles are they worth it?

Nights can become very long when you either can’t sleep due to the high dose of prednisilone giving you insomnia or the nights when you reduce prednisilone and you hope desperately for a decent night sleep but instead you are up and down needing inhalers or nebulisers for relief and to try and combat the wheeze that not only makes it hard to breath but when trying to sleep and being wheezy it feels as though the low whistle is inside your head and it can drive you crazy!

Last night was one of those long nights. I don’t know how many times I rearranged my pillows, plumped them up to give me as much elevation as possible, or got up to sit on the couch for a nebuliser and some relief. The hours ticked by so slowly and the more I watched them the slower they went by.

The long hours leave you thinking about what is important in your life and what battles are worth the fight and what are just pulling you down and not worth the effort.

Working is very important to me. It gives me a purpose to my day. I love looking after my patients and trying to improve their quality of life but I find just now put effort into their lives is at a cost to my own. I have never seen myself as not working or giving up work but recently I have thoughts about stopping creeping in more and more. Everyday is becoming more of an effort. I have gone from working 12.5 hour shifts and night shifts, to core shifts on a ward, to community based job planning my day, to 7.5 hour days and now consider even dropping those hours down to work less.

When I first started working I would play golf after work and I would have a life but I was on a lot more medication and I was generally in better health. Slowly I was not doing as much on my off days and I had to stop working long shifts. With this reduction I could drop some medication but eventually this got to much and working on the ward was just too much and I moved to the community based job and to start with I was able t do more again and with that I could reduce medication but then again the same thing happened and I struggled to do anything out of work so I reduced my hours and it really helped. But once again after my asthma getting worse again I am finding it harder and harder to do the things I want to when I finish work.

Just now I am on more medication than I ever have been. The last time I was on this much medication was when I was about to move from Winchester back up to Edinburgh. I wonder if the fight is worth it. Am I just going to keep increasing medication. Where is the limit?

I have some great friends at work who really support me. I don’t want them to feel I can’t do my job but want to think that I can help them out when they need it and I can help them out when they need it. This works on the whole but when team work falls down it effects me so much more. Its because I am weak. I don’t rely on my colleagues but a stressful situation puts more stress on me as I am already working so hard just to keep even. This leaves me questioning is it really worth it. What benefit am I getting and am I letting people down by working when someone else could do my job better because they are physically healthy and don’t have stop for breath, or medication or avoid triggers.

I’m just not sure anymore if putting myself through so much stress is actually worth it. It is the hardest thing to motivate yourself when you are not gaining anything and not thriving in life. I am going through the process of researching what is out there to help me and perhaps see if there a different type of job which will not cause the physical and emotional stress. It is so hard to know what to do for the best. I need to take some time and evaluate my life weighing up what is important as just now everything is sacrificed and I just don’t want that.

I wonder if one day a cure will be found and I won’t have to think and plan my life to accommodate my asthma and really rubbish breathing. It scares me that perhaps life will not get better than this!