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

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

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

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

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

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

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

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

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It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.