Struggling to stay positive

After being seen in neurology I felt kind of positive. I was excited because I was going to be part of a trial for the type of nerve injury I have. I have just received the clinic letter which is eye opening and reading the findings just makes it feel so much more complex. It has also left me feeling really vulnerable and weak. Before I used to get frustrated by people who would stick there nose in if I parked in a disabled parking space because of course you cant see how asthma effects you there is nothing that flags you out as different but now walking with a stick, walking with a big deficit and only being able to wear one pair of shoes that my brace fits in is so visible. I can also feel the pity people have. While in the near waiting room I overheard the people sitting opposite me saying it is so sad when young people have to come in to clinics with such struggles while looking at me with that smile and head tilt. I would right now give anything to go back to just being frustrated by people who like to make judgements.

The most disappointing part of the clinic letter is that I am not suitable for the trial because I have 2 different nerve things going on. If I only had the nerve injury then I would be ok but because of the muscle weakness I have I can no longer be a participant. I have been referred to the neurophysiotherapy team to get them to help me and I also need to go for various tests on my nerves such as nerve conductions studies and EMG done.

The hard part that I find is that this is all so out of my control. Before when I have been unwell it has been my asthma. To be fair I know pretty much all there is to know about asthma or at least my type of asthma so when unwell I can kind of deal with it as I understand what is going on so know how it might pan out. With this I am totally in the dark with it. Nothing is within my control now. I just have to let my nerves heal and do the physio when I am seen. I see the musculoskeletal physio that my GP referred me to tomorrow morning but I’m not sure if I will continue staying there because of the referral to the neuro physio too. I figured I just need to get started and get on the road to recover as best as possible as I cant stay where I am with the brace/splint and wearing trainers out like there is no tomorrow!

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Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

No matter how much preparation asthma can still bite!!!

This weekend was a fantastic weekend. It was the MacRobert Tournament which this year was the biggest in the tournaments history with teams coming up from Leeds, Manchester and across from Norway. It was fantastic playing just women’s lacrosse as well as mixed lacrosse. Women lacrosse is no different in its rules but you do find there is more stick work skill as some boys (not all though) don’t tend to have the stick work and will just use their speed and the frying pan technique.

Saturday didnt go as planned. The weather was not great. It was freezing cold. I played a game and a half and then helped at the come and try session which was running for school kids to come and try not only lacrosse but also shinty. Saturday was a much better day as the weather was great, sun was out and nice warm weather. There were a lot of tired legs around but the team did well and won the mixed tournament bringing our trophy count to 4 for the season.

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Saturday was not my day though. A BBQ hit me with no prior warning. I say hit me i don’t mean physically hit me but the smoke from it induced a small asthma attack and I had to get my team mates on the side line to run on with my inhaler. Trying to take an inhaler in full goalie kit while a match is in progress is one of the hardest things to do. Overtime I tried to take it the ball would turn over and we were back defending. I managed to get through the game just- thankfully they were only 20 mins long. After the match a couple of nebs and I felt better and ready to go again but once back on the pitch after a few minutes my chest just tightened up. I couldn’t call or anything so I had to get off thankfully our other goalie who was playing out field for another team was changed and could hop in for me. Devastated that that was the end of the tournament for me but it was a real struggle just to get off the pitch so I knew I wouldn’t be able to go back again and play. Thankfully it was such a nice day it was alright sitting on the side watching.

It really bugs me that no matter how much preparation you do there are still things which are so small to others can make such a big impact on a set of twitchy lungs. Most people may not notice the smokey smell but my lungs felt it before my nose smelt it!!!

Today I have been really short of breath and have a really hoarse voice. It is horrible with this ongoing feeling of tightness and someone constantly sitting on your chest. I long for the day that asthma can be better managed.

I thought the end of the season was going to go really smoothly but maybe not. Plan now is to rest and stay low to be well for June where I go to Italy, London and Prague so I need to be in top form for that!!!

Brittle Asthma is brittle for a reason.

I done a lot of blogging recently but it is because I feel things that have been happening are important to understand what it is really like living with difficult to control (brittle) asthma.

Last week I have had such a good week and been on a high with the amount I can do and not really given anything much thought. Life felt good which in a way made me feel invincible and on top of my asthma. So about 10pm on Friday night it felt like I crashed down to Earth with a massive bang. I was watching the Rugby World Cup at my friends house. There is a bunch of us who love rugby so we got together to watch the opening ceremony and first game. I felt good when I walked down to my mates house but as the rugby ended I felt really odd. I had a small gin and tonic but didnt finish it so it was not an odd feeling due to alcohol. I had this pressure in my head and my chest felt really tight. I decided to go home. A walk which normally takes me 20 minutes took me almost an hour. I had to keep stopping to catch my breath. It was horrible. I fell into bed.

I guess thats what brittle asthma truly is. Even when well you still have difficult to control asthma which can swing in all different directions at the drop of a hat. It must always be remembered and respected so that asthma does not win the battle and I win the battle for control and good health.

Today I have felt horrible. My head has been pounding with pressure in my sinuses and a hacking cough. A full on cold has hit me hard and flattened me. Constant sneezing and coughing has left my chest in agony and making everything even more difficult. I do feel that because I felt so well in the lead up to this a cold hitting me has hit me harder than normal as the drop from good health to being unwell has been much greater than before when I was not so stable and always a bit symptomatic so a cold was not that big a deal as day to day living was trickier than before.

Today has been a haze of sleeping, coughing and just feeling rubbish and sorry for myself. I really hope I can break the back of this tonight and feel better tomorrow. I feels deflating to know I was feeling so good and then dropping to not feeling great. I know it was not going to last forever feeling so good as no one can avoid colds and bugs going around at this time of year but I did not expect to feel so rubbish so quickly and so physically weak in such a short space of time.

Trying to take the positives out of it. At least I have a good excuse for staying on the sofa doing nothing but watching the rugby and golf! Fingers crossed for feeling better tomorrow!

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.

Breathing tests every two weeks- every patients nightmare

For any asthmatic or any person who needs to be seen in a clinic or Drs surgery they will more often than not be requested to do some kind of breathing test. In a GP setting this tends to be peak flow measuring your peak expiratory flow rate in litres per minute. Pretty much every asthmatic should have a peak flow device and if not you should be asking your asthma nurse or GP for one. It is one of the most useful home tools to identify how well you condition is.

However as a condition progresses or becomes more challenging to keep in control further testing may be needed. Patients attending any respiratory clinic in a hospital will probably be sent to the dreaded lung function room first to a variety of different breathing tests from FEV, FEV1 or perhaps flow loops.

I hate lung function, mostly because my lung function is not as good as it used to be but also because I have so much pain for some reason in my left hand side at the lower lung area. We are not sure why its sore but most likely muscular but nothing that serious. I find doing my FVC or forced vital capacity is not a problem because breathing out all the way is not too hard unless I am having an attack. My issue comes when I have to do my forced expiratory volume in 1 second. You have to take a big breath in and then blow out as hard and fast as possible until empty. This is where I get sore. I just always get a really sharp stabbing when I move from breathing in to breathing out hard. It stops me in my tracks. It makes me feel like I have been winded or kicked in the ribs- so understandably I don’t like doing it.

More recently there has been a new device introduced into the lung function world and the lung function room which I don’t mind so much, now that I have got the hang of it. It is FeNo or Exhaled nitric oxide. FeNo is measuring the amount of inflammation present in your airways which can identify how well controlled your asthma is. This is an odd test where you have this handheld white box thing which you need to breath in through and out though at a certain rate. I have done this test with a number of different people who all have different strategies. The aim of the test is to keep a cloud between two lines by breathing out through the machine at a certain rate. You can do this by watching yourself in a mirror so you can see the cloud which is on the side of the machine facing away from you or you can have the pulmonary function technician telling you to blow harder or softer which is very amusing and totally puts me off. Even watching myself puts me off as I just laugh. I have got used to the face I make and don’t laugh quite as much and don’t need as many attempts as I used to. I think I would on occasion leave them all shaking their heads when they had a busy clinic and was laughing at myself thus holding proceedings up!!! (I will find/ get a video of myself doing the FeNo test so you can see what I mean!!).

From what you have read so far you can probably guess that I don’t like doing lung function. I don’t think I will ever like doing it, so you can imagine when a few months ago in clinic my consultant suggested coming for lung function every two weeks and then emailing her the result. I was not amused and she went out of the clinic room to speak to lung function to sort it all out before the news really set in. When she was away all sorts of things were going through my head and thinking of ways I could get out of doing lung function every 2 weeks but I couldn’t think of much as I work in the same hospital as I work in so could not say I was too busy and wouldn’t be able to get away!!

I was so relieved when she came back and told me that it would only be the exhaled nitric oxide (FeNo) I would be doing every 2 weeks. I was relieved that none of the other tests would need to be done!! I was a bit skeptical at first about what FeNo every two weeks would achieve but now I am 2 months down the line and can really see where it has been really useful and helped me and my consultant make progress in my prednisilone reduction. Before it was a case of reduce the prednisilone by a few mg and then see how I did. Most of the time I would reduce for a few months, be fine and then have an attack which meant y dose was increased again. This time was different. I would do the FeNo test then email my consultant tell her the result and she would make a recommendation about what to do with my dose. So this way we know what is going on at the point of reduction rather than waiting and seeing what happens. I have repeated the rewards from it as we have managed to stick to the plan and I have been managing to go every two weeks pretty much give the odd day late here or there!!

This is the first time I have felt an element of control in my asthma. Perhaps it is a bit of a psychological result as well because I have had so many failed attempts at medication reduction when we go by the wait and see plan however now with FeNo I know I am good, bad or indifferent so have that reassurance that we are reducing at the right time.

I guess the two weekly lung function or as it turned out FeNo was not as bad as I first thought!!! It has been really good and the benefits certainly are better then the pain of going down to pulmonary function. Fingers crossed for continued progress. I am sure there will be the ups and downs but I guess it keeps like interesting!!

I must recommend FeNo to anyone. More hospitals are bringing it in and give a far better picture of how your lungs are actually doing.

Dreams are perhaps coming true!

For the longest time I have been willing for the day when I really feel like I am starting to get better and have my life back. I guess just going back to the “normal” me.

I always thought they day would come when a cure for asthma was found or my consultant tried a different medication and it worked wonders reducing my asthma symptoms and allowing me to play sport and do all I wanted to do again.

But things never happen as you think they will do they???

Over the past few months I have noticed a difference. A difference I couldn’t put my finger on but something had changed. My breathing seemed more controlled, I didnt feel I was always using my inhaler and I felt less tired even though I still am not sleeping well my body doesn’t feel so fatigued. I have been feeling this way a while but because of how the last years have gone I didnt want to jinks myself incase it was just false hope.

I have been willing my asthma to stay stable and been working so hard to maintain control so many ties over the years but had started to think that the day would never come. I really do think the day is perhaps coming where I am turning the corner and getting better. It is a surreal experience but one I am not taking for granted. Part of me has a fear that this is not going to last and I am jumping the gun so I am not celebrating too much just yet and not pushing myself to do all the things I want to!

It has been a long time coming. Just about 14 years since things started going a little off track, but 11 years since they really took a turn for the worse. There is a theory with asthma about the 7 year cycle. After 7 years it never really got much better but it is 14 years now so I am wondering about a 14 year cycle instead!!!

Im not complaining that things have got better but in some way it feel like an anticlimax. Sounds very odd for me to say but after all the medication, all the hospital admissions I was expecting some miraculous medication to fix things rather than it just to get better on its own. Don’t get me wrong I am over the moon that I have got a lot more control now!

The one thing that I think has made a big difference is the multidisciplinary approach to my care. My consultant has been really good at working with me and reducing my prednisilone something I never thought we would actually achieve but we have. Seeing a psychologist is also really helpful with working through the asthma and its impact on life.

I would love to think that this is it. That my asthma is now on the up and will only go up but I need to be real. It is not as bad as it was but to think I will never end up in hospital again is unrealistic. It would be great but if I was to think I won’t need to go again and I do need the hospital it would be a massive blow, so acknowledging that I might need to go is just keeping it real.

So what has changed??

I don’t know. I am on the same medication, Im doing the same things, Im still following my diet so I cannot pin point any one thing that has made a difference. A combination of looking after myself better, a really good regime with my medication and never missing a dose have probably played a big part in it. I have also mentally changed my outlook to look at the positives rather than focus on what I cannot do but rather what I can do and what I have achieved.

I have decided that once I have a prolonged period of stability for the next month or so then I will really start to increase my exercise and get back some of my fitness again as I am really missing it.

I have no idea if this is it or if this is just a short burst of good health but I a going to grab it with both hands and make the most out of it (within reason I don’t want to push the boundary and trigger an attack!).