Aspergillosis and Fatigue

People who have chronic respiratory illness frequently state that one of the main symptoms that they find difficult to cope with is perhaps one that doesn’t leap to mind as a major problem for most of us who do not have a chronic illness – fatigue.

Time and time again people who have aspergillosis mention how exhausted it makes them feel, and here at the National Aspergillosis Centre we have determined that fatigue is a major component of chronic pulmonary aspergillosis (CPA – see Al-Shair et. al. 2016) and that the impact of aspergillosis on a patients quality of life correlated well with the level of fatigue suffered.

There are many possible causes of fatigue in the chronically ill: it could partly be a result of the energy that the immune system of a patient puts into fighting off the infection, it could partly be a consequence of some of the medication taken by people who are chronically ill and possibly even the result of undiagnosed health problems such as anaemia, hypothyroidism, low cortisol or infection (e.g. long COVID).

Because of the many possibilities that cause fatigue, your first step in trying to improve the situation is to go and see your doctor who can check for all common causes of fatigue. Once you have established that there are no other possible hidden causes you might read through this article on fatigue produced by NHS Scotland containing lots of food for thought and suggestions to improve your fatigue.

Coping with fatigue

Aspergillosis and the benefits of gentle exercise – a patient’s perspective

Image of a male and female exercising in their home. Both individuals are in a squat position with their hands out in front of them. Palms facing inwards.

A happy senior couple indoors at home, doing exercise indoors.

Cecilia Williams suffers from aspergillosis in the form of an aspergilloma and Chronic Pulmonary Aspergillosis (CPA). In this post, Cecilia talks about how a light but regular exercise regime has helped improve her health and wellbeing.

 

I downloaded the exercise guide (available here) in September this year. My oxygen levels had been dreadful, and I wanted to do some form of at-home pulmonary rehabilitation. I was surprised that the exercises in the programme were to be undertaken daily, as previous pulmonary programmes at the hospital were only three times a week. However, this programme was a lot simpler.

I do a stretching routine for a few minutes before the exercises, and I have now introduced 2.5kg weights, but I would do them without weights when I first started. I started at the lowest number of reps for the seated and standing exercises and have gradually increased to the recommended sets. I take my time to do the exercises as I can get breathless, and the time it takes depends on the kind of day I’m having. I break the 30-minute step into two; one first thing in the morning and one after lunch. If I go for a walk outside, I just do the other exercises and no step routine. I make a conscious effort to concentrate on my breathing as indicated on the chart. I use the breathing techniques recommended by Phil (National Aspergillosis Centre Specialist Physiotherapist, video available here), which has been my go-to for getting my breathing back to normal.

When I started this programme, my oxygen saturation levels were poor. I was breathless for long periods, and I would suffer all day with terrible nasal congestion and postnasal drip – I was forever steaming with menthol crystals. Incorporating the exercises and breathing techniques into my daily routine (first thing in the morning in my bedroom with the windows open) has had a profound effect. My congestion clears easier without steaming. I can take deeper breaths and hold my breath for longer. I have noticed the time it takes for me to recover from episodes of low oxygen levels and breathlessness has also improved. I do all the exercises on the table; the balance ones are essential, and with time and practice, I am improving – though I haven’t started doing them with my eyes closed – I am not there yet! I hope that writing my account of the benefits even the lightest of exercise programmes has gives others confidence and encouragement to undertake an at-home exercise programme.

 

If you want to know more about exercising with aspergillosis, our Specialist Physiotherapist Phil Langdon has a talk available via our YouTube channel here. 

Aspergillosis and Depression: A Personal Reflection

Mental Health spelled out in scrabble letters.

 

Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Below is Alison’s personal account of her recent experiences with aspergillosis and the impact it has had on her mental health.

Physical and mental health go hand in hand. Opening up about the impact chronic conditions can have on mental health is important to remove the stigma and feelings of isolation. Here at the National Aspergillosis Centre, we provide a warm, no pressure virtual support group where you can chat with others, ask questions or just sit and listen. Details about our weekly meetings can be found here. If you cannot join our support group, we have also have a friendly Facebook group where you can ask questions, get advice and find signposts to helpful material.

 

Aspergillosis and Depression: A Personal Reflection 

Now that I am not feeling quite so down, I thought it a good time to write about dealing with bouts of “the blues” that verge on depression. 

 

I have really been struggling on and off for a week or two.  The pleural pain from ABPA has become quite debilitating; the fatigue and exhaustion are frustrating. In addition, I suffer from waves of feeling hot, especially at night. At times, I become aware that my breathing has become shallow and rapid in an effort to bypass the discomfort of breathing  (time to kick in good breathing techniques).

 

I have been back on Itraconazole for over 8 weeks, and I think I was hopeful that it would bring about improvements, but not as yet. I also only have one kidney and a ‘contorted urethra’ that causes urinary reflux, so pain /discomfort and issues in the plumbing department.  I have osteoporosis from extended prednisone treatment and neuro pain in my feet and legs. I ache all over. I feel like I’m living on paracetamol, inhalers etc. None of which seem to make any difference.  Doctors confirm that I have no wheeze.

 

First thing in the morning, my mouth is encased in dry foulness that then reconstitutes as a yellow-brown foam until the sinuses and upper bronchial tract have been cleared; then, it settles to a white or pale green foamy mucus.  Getting the pain and the breathing back under control each morning seems like a huge mission that takes at least two hours for meds and gravity to kick (and maybe also a little coffee ritual) in.

 

Another patient recently reminded us about daily energy levels being visualised as 12 spoons for a day, and every little thing we do uses up a spoon of energy. Unfortunately, of late, my spoons have only been small teaspoon size!

 

None of the symptoms from all the above things listed, on their own, could be classified as major or significant; but they combine to make it feel like I have just got over a severe acute bout of pneumonia (but I haven’t actually been that sick).  Past experience leads me to think that all can be well again with time, rest, and rebuilding fitness. 

 

However, the reality is: What is caused by what condition and what is a side effect of medications is almost impossible to identify. So the whole mess is a complex balancing act for the medical team between the various conditions and possible side effects to get a reasonable quality of life. 

 

I was pushing on, learning to accept that I have to physically rest more often but had a little sitting project I could do. “I can handle this,” I thought. Then a couple more things went wrong; I ripped another layer of skin off my “prednisone tissue paper arms” that required medical dressings, then NZ was plunged into a Level 4 Lockdown because of COVID Delta variant breaking out in the community. So a planned camping trip to celebrate my friend’s 50th Wedding Anniversary and return to my beach home to work on projects and collect belongings I hadn’t yet moved to the unit all got cancelled, and I was confined to quarters. Suddenly I was overwhelmed with despondency. 

 

I dealt with Depression many years ago, and also, as a Grief Recovery Facilitator, I have the knowledge and the tools to help myself through this. But it came in waves, and the energy to fight was not available. So it can be a very scary place to find oneself.

 

Depression is not rational (I have a great deal to be thankful for and conditions in New Zealand are far from difficult). As I was thinking through why I was struggling to throw off the despondency, I realised that to a degree; I had not yet fully grasped the extent of how aspergillosis affects my life. I had had some periods of feeling pretty good compared to how sick I had been when first diagnosed, and flares had been relatively short since then. This time not so much. A bit like when first working through a bereavement loss, you think you have grieved and come to terms with the loss. A bit of denial of the impact, maybe. Then suddenly, it hits… Aspergillosis is Chronic. It will not be recovered from. There will continue to be readjustments in lifestyle needed. 

 

These realities do not need to send me into depression. Recognising and acknowledging the realities can then empower me to see the bigger picture. It can be managed (to a degree). Others have overcome greater issues than mine. There are things that I can work on that will help. My struggle can be an encouragement to someone else. Talking with others and writing all help. 

 

More importantly, for me, as a follower of Jesus Christ, I firmly believe in the sovereignty of God and in the midst of any trial or difficulties I may be having in this world, He has a greater plan for my good, to draw me into a closer relationship with the Trinity of God the Father, Son & Holy Spirit, preparing me for eternity with Him.  The trials that I face are instrumental in that process. I am currently rereading a very good book, “The Pressures Off” by Larry Crabb, which is helping with my thinking on this. 

 

If you want to read more about how you can support your mental wellbeing, Every Mind Matters has some top tips available here.

Dying Matters Awareness Week

“Talking about death doesn’t bring death closer. It’s about planning for life, helping us make the most of the time we have.” Hospice UK, 2020

Nearly a quarter of UK adults are uncomfortable thinking about their own death and end of life issues. Three quarters (74%) of people haven’t written down their wishes or told people what they would prefer at the end of life. Talking about death is never easy, but talking about it with those close to us is important to ensure our or their wishes for the end of life are met.

Last week (10-16 May) was Dying Matters Awareness Week, an annual event that provides organisations, individuals, and families with an opportunity to talk openly about dying and bereavement.

The focus of this year’s awareness week, which is organised by Dying Matters (part of Hospice UK), was on the importance of being in a good place to die because where people die is changing. More and more people have been dying at home in recent years. And the Covid-19 pandemic has seen this number rise by tens of thousands.

When asked, more than four in five people say they would prefer to die at home, but not enough is known about the reality of what this looks like, and there is very little evidence about the quality of those deaths and whether the right care and support was in place. What is known is that the quality of care for some people at the end of their life is still not good enough.

There is no right or wrong place to die; it will be different for everyone. But it is important for families to think about it, talk about it, and plan for it. Planning for death is more important than ever in a time when the COVID-19 pandemic has taken so many lives at such short notice and in circumstances that are beyond our control.

Dying Matters want people of all ages to be in a good place when they die – physically, emotionally, and with the right care in place. This is something we at the National Aspergillosis Centre support, but getting there means having some important conversations and taking some careful decisions.

Dying Matters has many helpful resources, ensuring that you and your loved ones are in a good place to die.

You can visit their website here.

They have several leaflets available for download:

 

Mental Health Awareness Week 2021

Today, Monday 10 May 2021, marks the launch of Mental Health Awareness Week, the UK’s national week to raise awareness of mental health.

 


The week, which the mental health foundation hosts, is in its 21st year and runs from 10-16 May.

It is not by accident that the theme for the week this year is ‘Nature’.

During the pandemic, millions of people turned to nature in an effort to cope with the ‘new normal’ and challenges we were all facing, and 45% of people reported being in green space had been vital for their mental health.

People across the country will be celebrating the mental health benefits of being around nature in their local community. We invite you – our aspergillosis community to join in and share your activities with us across social media.

Some of the ways you can participate in Mental Health Awareness Week:

  • Why not try to make a habit each day of connecting to the nature in your local area? Stop to listen to the birdsong, smell the freshly cut grass, take care of a house plant, notice any trees, flowers or animals nearby. Take a moment to appreciate these connections.

 

  • Share images/videos/or sound recordings of the nature on your doorstep (and how this made you feel) on social media using #ConnectWithNature and #MentalHealthAwarenessWeek hashtags. Tag us @MFT_NAC (Twitter) or @MFTNAC (Facebook), and we will share and collate all the images at the end of the week.

 

  • Join our weekly patient and carer support meeting. Held virtually on Thursday each week at 10am, it is a great opportunity to come and talk to NAC staff and other aspergillosis patients. You can find more information about the meetings and how to join here. Everyone is welcome, not just NAC patients and carers.

 

  • Join in with the 2021 Greater Manchester Walking Festival. Using 3 levels of calendars for the month, there is a visually prompted activity idea for each day of the month to encourage people to walk more during May.

 

Below is an infographic from the Wildlife Trust; more information about how you can improve your mental health through nature can be found here.
Mental health infographic from the Wildlife Trust

 

If you want to find out more about what you can do to look after your mental health, Every Mind Matters is an invaluable resource that aims to help people take simple steps to look after their mental wellbeing and support others.

 

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