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!


The Verdict!!


I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

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!!!

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.

All consuming

What do you do when everything you hate in life is everywhere you go??

This is what my asthma feels like just now. It doesn’t even leave me alone when Im asleep. I get woken up coughing, wheezing and gasping for breath. When Im awake its the same. I try to blank the tight feeling in my chest, or the low whistle that seems stuck in my head but it is ever present in my chest just now. When you have a bad day you can run away, hide in a darkened room and leave your fears and stresses behind but as I run into a darkened room my fears and stresses follow me and sit right next door to me. I just can’t get away from it.

Many ask me why I get involved in the research centre so much if my asthma bothers me so much but that is exactly why I get involved with AUKCAR so much because for asthma is everywhere and if I can use my experience to the benefit of research and others then fewer will have to suffer a life dictated by asthma.

Even if I was not putting my experience to good use I would still be all consumed by it as I can’t get away from it. If not away from the asthma then I still have the side effects of the medication used to control my chest. It is just never ending. One wish I would really like just now to to get away from it. But even that can’t be done. I often think if I do nothing then i won’t feel the effects of shortness of breath or being wheezy but even when doing nothing I find I need to reach for my inhaler or get woken up needing relief. It feels like my lungs hate me as much as I hate them.

I am on the count down to seeing my consultant on Monday. I am filled with apprehension, excitement, nervousness, and a slight bit of fear. I guess I want so much to change and hope for something to change but am very scared that there will be no change.


Clinic apps vs being a good patient vs being a bad patient

The past year I have found to be very long and it feels like one long constant fight for normality which I am losing little by little. Working in the healthcare profession I know all the well about the cost on the NHS when patients do not attend their appointments but recently I have really been feeling what is the point. I am not getting anywhere by being the diligent patient I am so why bother wasting my days off to sit in a waiting room full of people about 40 years + older than me who cough and splutter and most of whom who have smoked like a chimney half their life. Is sit willing to be called to go to lung function to get away from being stared at because I look so young. I hate lung function as it is but to get away from a germ infested waiting room is greater than my hatred of lung function.

The main issue I have and I know I am generalising as not all of those at clinic have smoked etc but could be like me but I long to have something to blame my rubbish lungs on. I think having a reason as to why my asthma is so fragile would help me deal with it better. Just now my consultant tells me I do everything right but I am just going to have these attacks and it is so hard to hear. Going back 6/7 years I could say I was stupid and reckless and didnt look after myself so had reason for having attacks but it was not the reason for why my asthma is so difficult to control.

Many days you can have a positive outlook and think “yes today is a good day and my breathing is ok” but then other days you think “my breathing is ok but why is it not good” or you get the days when breathing is crap but you got nothing on so you watch films but the hardest days are when breathing is really bad and you have to cancel plans you had made because of it.

Why am I rambling in this post. I think because I have a clinic appointment on a day I have other plans already made. Part of me just wants to sack it and miss clinic because I don’t want to cancel my plans and they won’t change my appointment time. The more rational side of my brain says that I need to go to clinic even though nothin may come of it but to be seen to be adhering to treatment and trying to get myself better I can’t go missing appointments. The one time i do miss an appointment will no doubt be the time that there are changes planned.

Its hard work but it is the reality of living with a chronic condition. There are so many things you can’t do when you want to and attending appointments is just another of those things you have to do wether you want to or not!

But I won’t be a drain on the NHS and waste appointments. I will go to them even if I don’t want to. It is just sometimes finding the motivation to go is hard!

Great Expectations

Yesterday I saw my consultant in clinic. His secretary actually called in the morning to cancel it as Consultant wanted to have a joint appointment in a few weeks to finalise the emergency care plan that was being written should I end up in hospital. However recently I have not been really really unwell but not being doing great either just bobbing along below par. So I spoke to him on the phone to ask what to do about my steroids and that I had not been feeling great. He heard me and said I was to come up and see him in clinic to see if I needed admitting. I was to keep the appointment for  a few weeks time as well.

After my last clinic appointment I was really happy. I had a goal that if my lung function remained stable then I would be able to do some light exercise and go to the gym to do some weights ad core stuff. I have missed the gym so much. I don’t know what i expected when I did lung function yesterday. But it was worse. It was 52% of predicted last time it was 47% today. Less than half. It has been about 5 years since my lung function was this low. Part of me is not surprised and part of me is devastated. I left the lung function room not knowing what to think really. I saw consultant who said I was ok but we were not continuing with plan to reduce steroids and he would see me in a few weeks. I can go to the gym but no cardio just do light weights and core stuff nothing that will push me too hard. At least its something. Not what I was wanting but I can’t be greedy and expect to be able to do things when my lungs are worse than they were a month ago.

I am hoping that with just a little bit of exercise I will improve my core and perhaps my posture which may help my breathing.

My next clinic is in 3 weeks so not long but will aim to see a better lung function then.

Below is a post I wrote and never published but wanted to include in it today. I wrote it after a my New Years post where I had said I did not want to set goals and targets for this year. In actual fact I had. I set them everyday. Just tho post above shows I set targets. I do it without thinking. Everyone has goals and targets even if they are not consciously making them.

Almost contradicting my last post (post from Dec 31st 2014) where I said I didnt want to set goals to achieve for 2015 in the back of my head I did have some goals and aspirations because it is who I am. I can’t move away from the competitive nature I have.

I wanted to try and stay away from hospital and feeling unwell confined to my sofa for what feels like days on end. I have so far avoided hospital other than for work but since Hogmanay I have been on my sofa struggling with shortness of breath and wheezing.

It is so frustrating because just as I think I am getting somewhere and getting stability back in my life. I was so buoyed up from my last consultant appointment where he said that if my lung function was stable by the next time I see him on the 21st of January then I can start going back to the gym and some light cardio work and some weights. The main thing for me is to get some exercise back into my life. It has been a huge part of it even through everything with my chest. For the first time I see a lack of muscle definition in my arms and legs which is something I have always maintained but now it is slipped away.

I am scared that these past few days are an insight of what may follow. Will this be how the rest of the year will play out. Am I going to get my life back. Or not even get my life totally back but just a little bit of it.

On the other side as much as I am frustrated about how my asthma is and how it is dictating my life I have an underlying fear that if I do go back to the gym how much will I be able to do. While not in the gym I know I will not be able to do what I did once before but that competitive mentality I think may slip back and I will push myself because it is what comes naturally to me. I am also really scared that when I do go back to the gym I will cause myself to have asthma attacks and will have that exercise induced part of asthma back in my life. Just now I try and lead my life in such a way that I minimise any chance of putting myself in a position where I might risk an asthma attack. Part of this means I am not living my life to the maximum but it is a balance of good and bad. For me by not living my life to the full means that I am also not risking my life.

I can see that so many people want to live their life to the fullest. I see those who have had transplants and have been given that second chance at life. With this second chance they don’t want to waste a single day which is admirable and I understand why they take that approach to life. I wish I could take that approach. But I have a massive fear of going back to the yoyo of in and out of hospital.

By not pushing my self to my limits I have significantly reduced the amount of time I am being admitted to hospital, the length of hospital stays is shorter and I no longer end up having to go to critical care with every admission.

It is a really difficult balance. Getting the balance between living life and not jeopardising life.