New horizons- not knowing how to feel!

In March/April for me my asthma care hit a wall and I could no longer continue as I  was. Despite my consultant being one of the best in the field of difficult to control asthma I was getting no where, I was feeling lost, totally out of control and no idea what I was doing other than trying to keep myself as well as possible. Something had to change and in my opinion it could only be change for the good because I felt things couldn’t get much worse.

That hospital admission changed everything back in April time. By the time I was discharged I had a new team and although I had not met with them yet I felt more confident about my care, who was looking after me and positive about the future. Once discharged home I eagerly awaited my outpatient clinic appointment to find out what would be happening and where I would be going with my care. It took a while to come but yesterday I had my clinic appointment. I spoke with my new consultant on the phone and discussed various things including monoclonal antibody treatment which the allergy people were also keen on. It was decided I would wait and see the consultant once a decision was made on it.

I pinned a lot on yesterdays appointment and the new treatment I would be starting. I kept trying to tell myself to not put all my eggs in this basket as things may not change at all and I might yet end up the same as I am and no further forward in getting my asthma under control. Recently I have felt well and managing my asthma quite well. It is because of the high dose of oral steroids I am on and using nebulisers fairly regularly but it has kept me well. People have commented on how well I look and sound. Again the security blanket of prednisolone the drug we all love to hate but right now I am loving it because I feel so well (come 3am when I am up with insomnia and restless legs I am not so fond of it but cant win them all).

So what happened yesterday….

Well not what I wanted but despite this it was a positive appointment. We did not start new treatment. 2 reasons- my chest was not quite good enough. The recent weather has caused a bit of havoc and I have found it more difficult to remain stable but also he wants to use a different drug but the same type of medication.

He is hopeful that my asthma will get better. He did say and many consultants have said it before I will never be free of asthma and may still need hospital help but I should not have to rely on steroids like I am to be able to function and live some sort of life. I long to just be able to plan things and know where I am with my health from week to week or day to day.

Having faith in a tea is so important and to feel listened to. I went with a list of questions and things I wanted more information on such as a plan of what to do when I am not well because being on unlicensed doses of inhalers and oral steroids there is no where to go when things get bad other than the hospital and that is not needed just for extra medication so to have a plan for this at home would be really helpful.

It may not be perfect but I feel more confident in having someone who I can speak to, I almost ended up crying when I was there as I am so frustrated at my asthma and everything it has cost me and stopped me doing. I try to find the positive and focus on the positives things I have done as a result of asthma but there is the still wonder of what would life be like if my health was to become stable.

I was really shocked when after my appointment I felt so drained and then in the middle of the night I woke up and was so angry. I think it sunk in that there is going to be a change. It may or may not work but something is being tried and nothing has been tried in as long as I can remember. I felt so angry that I have been left sitting for years just going in and out of hospital, up and down on steroids and nothing more was being done so had resigned myself to the forever of life being like that until the attack came that would finish it all. I was angry that only because of a bad admission and really throwing my toys out the pram that something has changed and may help. Im not sure how I will feel about the last decade if this new treatment has a positive effect.

Life has been very busy with various things particularly research and PPI which I love and so thankful to have it to fall on when I asthma is stopping me from doing everything else in my life!!!

Sick leave- what do you do??

Being on sick leave seems to be an all too common occurrence for me. It is never just a day either its weeks and weeks which feels like months and months (well sometimes it is months).

Often people say to me they would love to be off for as long as I have been off and it must have been nice. I hate saying its not and Im glad to be back but it is the truth. I hate being off as I do love my job. I think when you are at work and having a really hard, difficult day the idea of being off is just great, and then when you have had a week of annual leave that has gone by in just a flash you long for more time off to have a good recharge so when someone is off for a extended time you think it would be bliss but to me it is far from that.

Time stands still, it feels like it moves backwards, hours drag and minutes feel like hours. It is ok when I am in hospital and unwell because you feel so awful- time stands still in a different manner, you want time to speed up so you will be out the attack and find it easier to breathe but it doesn’t speed up, again it takes forever but once out the initial terrifying difficulty to breathe has passed you are left feeling exhausted and time just passes as you dose on and off requiring medication in-between but time just passes in a haze so you really have no idea about time or what day it is. This bit is ok as you really do feel ill and just curl up.

With asthma the tricky bit is when you feel better but you feel better when doing nothing and I mean doing nothing. Lying on a bed you are totally fine, breathing is good, heart rate is comfy, pain is at a low and all seems ok with the world until you need the toilet, shower, something to drink and thats it. Your lungs tighten up, heart rate sky rockets and pain rips through your lungs and you think to yourself all you did was stand up and take a few steps but feel like you have just run a marathon. This is when time is at an ultimate go slow. There is only so much lying on your bed or sitting on the sofa you can do. There is only so much day time TV or on demand TV and films you can watch.

They say rest is good for you, enforced rest is even better for you but even harder especially when you know that any movement you do will cause you to feel pain and go backwards. It is frustrating and difficult. Many of my friends with asthma and other lung diseases know exactly what it is like and share my frustrations. For me it makes getting back to work difficult because doing nothing you feel invincible but when do you know that you are ok to go back to work?? It is a hard call and loving work means you want to go back as soon as possible.

I find my self very fortunate as I have my patient and public involvement stuff which I can occupy myself with when having to be inactive and resting. It keeps my brain really active and i feel like I am doing something good with my down time. It is important and it stops me dwelling on what I imagine I should be doing. I would torment myself otherwise. Also writing this blog and the various support groups I am in helps me through it all but I know others don’t have that which is why I am so passionate about PPI because of the impact it has had on me. I am sure I would have long given up the prospect of even returning to work or do anything had I not had a such positive experience being involved in research. It has made the time that stands still move on and passes and soon it is the day to return to work.

How do I know when I am ready to go back to work properly and actually ready rather than my brain is super bored and I need to do something? This time it has taken me longer to go back to work which Im not ecstatic about however over the past week I have noticed how many people say how much better I am looking and how my breathing appears and sounds. This is the first time in a very long time that people have said positive things about how I look or appear compared with how I look like death warmed up and sound like I have swallowed a whistle. It think this is down to a combination of things, 1 having a better steroid regime which is preventing the dip I kept having late on in the day, 2 switching medical team to a new consultant, asthma nurse etc and having confidence in this team and knowing that things are getting looked into compared to before, and lastly I have been off longer but then I was kept longer in hospital and was reliant on less nebulisers when I was discharged than when I am admitted to the Royal and get discharged often before I can even walk the length of the room and often just bounce back in meaning I am not great and more stress on my body. So there is a number of different factors this time that have changed.

The last few days have been a great test for me to see how I really am doing. Going in to work to help with registrar peritoneal dialysis teaching which I really enjoyed and felt like I was useful. I must say I do love teaching but not just the teaching about something but instilling in the teaching and training how important the patient is and not just to get them better but respecting their choice and understanding what is important to them. I feel in renal this sometimes can be over looked especially when a patient chooses peritoneal dialysis as the work up can be longer and if they suddenly decline and require dialysis without a second thought a temporary line is stuck in them and then thats them on haemodialysis.

Today was also another great check to see how the lungs were doing. I attended a collider to discuss ‘Decision Support for Asthma’ which was industry partners, researchers, clinicians as well as patients to brain storm ways to help those with asthma. It was a fascinating meeting and what was clear was the passion of all those that attended to help people with asthma. Ideas were not the same in the groups but the patient and patient choice was at the centre. As a patient it was great to share what is useful and what is not useful to living with asthma. I will write a different post about this as I hope it will have positive outcomes and lead to new innovations.  I was tired by the end of the day but a good tired and not too chesty either despite the really hot weather and humidity (which I think will only get worse as the weekend goes on!!).

 

So fingers crossed when I see the GP on Wednesday she gives me the thumbs up to go back to work and some normality can return to my life!!!

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.

Steroid Withdrawal

I thought I would write this post just now as I am suffering right as I type from the worst steroid withdrawal I think I have ever had to deal with. (at least I am hoping it is steroid withdrawal and nothing else!!)

Although my last dose change was 5 days ago where I dropped my dose by 5mg (yes a whole 5mg- the biggest drop I have done in a long time) today I have found the effects of this really bad. Not in a sense that my lungs are rebelling at the reduction in prednisilone but my body is being crippled.

I was never really aware of the effects of steroid withdrawal before and always put aches and pains down to being on steroids and I could be bruised easier, or if I felt colder it was because my immune system was suppressed. It was only recently that a consultant told me that I need to be very careful in reading my symptoms correctly as often reducing steroids can make you feel terrible almost like you have the flu.

I think I was never aware of this because my reduction had been so slow before that in my mind my body wouldn’t notice 0.5mg or 1mg reduction but 5mg is a pretty big jump. The plan is to get down to 10mg and then go a bit slower because at around 7 or 8mg is the amount your adrenal glands naturally produces so we need to wake up the adrenal gland to make sure it starts producing its own cortisol again and not become too reliant on synthetic steroids.

So what am I feeling just now?? I feel like my joints want to explode. Last week I have had tendonitis in my right ankle which has been really painful leaving me unable to walk by the end of the day. This was only one ankle though. Tonight It is both ankles, my knees and hips. The only way I can describe it is that it is kind of a really strong ache with both a crushing sensation but also a sensation that my joints are too big for the area they are in and they want to burst out. I know this sounds very weird and probably not many can picture that kind of pain but this is the best I can describe it. I had to crawl from the couch to my bed because the pain in my ankles is so bad. I am at the point I am tempted to put ibuprofen gel on my ankles just for some relief as well as dosing up on chlorophenamine to counter act the allergic reaction. I used this gel previously thinking I might be ok but broke out in hives and the area I used the gel just swelled up so not the best stuff for me.

I am so desperate to reduce my steroids and doing it now is the best time because I feel pretty well. But not only do I feel well I know I am well enough because my inflammation level in my lungs is lower than it has been so it is defiantly a good time. Having the reassurance of knowing the numbers are good has had a good effect on me and I think reduced any anxiety I may have had before about steroid reduction!

This is the only sign of steroid withdrawal I am having and I am hoping that it is this and nothing else. I tend to blame everything I have on the prednisilone wether it be the good the bad or the ugly!!! I really want to persevere with the planned reduction because this is the first time in a long time I have felt pretty stable and been able to do more.

I have never used illegal drugs and never plan to especially after feeling like this. I can only imagine withdrawal from opiates and other drugs is 100 times worse. I am very anti drugs aswell and won’t associate with anyone who takes anything illegal (legal marijuana for medical reasons I would because it is being used in the right way) and this has just reaffirmed.

I may find after seeing the physio I am totally wrong and the pains I am getting is nothing to do with reducing my steroids but something totally different!!!

Clinic and next steps!

Yesterday I was a bag of nervous, full of fear and also there was a hint of excitement at what may come of going back to see my old consultant again. She knows me the best. I have known her my whole time since I moved back up to Edinburgh. It was a relief to see her again. She just gets me and knows what is important to me and helps me to be able to do what I want to.

What was the outcome of seeing her?

We have a plan. A plan to reduce the prednisilone and much more intensive than was before. In the past we would just reduce and see what was happened. Instead this time I have to go to pulmonary function every 2 weeks to have a FeNo test.  I will then be in email contact with my consultant to give her the result. Depending on the result we will reduce or stay on the same dose of prednisilone. This way I hope that I won’t have the dips and crashes I was having when reducing. We can see exactly what is going on and when. Fingers crossed this will prevent any attacks and I can get off the prednisilone once and for all. Its going to be a long road but hopefully one that will be worth it.

I am also going to see a psychologist to refresh my strategies for pacing myself and dealing with my asthma. I am not the best at getting the balance right between too much and too little. As a result I tend to have peaks and troughs  in my energy and ability to do things. I want to get back into the right balance of work and life.

Even though not a huge amount has happened in the appointment and no big medication changes or anything I do feel like I managed to get a lot out of it and have the reassurance of being under someone who knows me. It is almost a safety net in a way. I also know she will tell me if I am not doing enough and tell me if I do too much which is a good thing.

Hopefully this plan will be positive and have a positive outcome.

Some nights you just want to cry

Tonight is one of those nights where I am super tired but I just want to cry or scream and really don’t know what to do with myself.

The air feels thick and I have this overwhelming feeling to stick my head in a cold shower or go outside, although going outside will not do anything as it is the change in weather that is causing me to feel like this. The weather is getting warmer but with that there are subtle changes in atmospheric pressure causing my asthma to play up a little bit. It is a choking feeling and a heaviness in the air making it feel like I need to gulp it down to get it into my lungs. To try and alleviate these symptoms I have my fan going to circulate the air and have taken an extra boost of prednisilone to help settle things. But as always taking extra prednisilone at night results in a very broken night with little to no sleep. Better no sleep than no breath though.

There was no point to this post but  just a need to vent and put down the feelings in a hope I may catch a few hours kip before work tomorrow!