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.

Palliative Care – Not What You Might Think

Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to think that your healthcare workers are preparing you for the final stages of your illness. That is not the case.

End-of-life care usually revolves around making what time you have left as comfortable at possible. Increasingly palliative care does much more than that – the NHS information page on End-of-life care includes the following exerpt:

End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a “whole” person, not just your illness or symptoms.

Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.

When we have spoken about palliative care to our patient groups here are some of the comments:

Palliative care can be very helpful. One individual I have worked with was very weak when we first met a few years ago after a very active life. He could barely speak. He was referred to a local palliative care team at a hospice where they were able to offer a variety of activities, holistic treatments and socialisation. He is now much better and a very chatty man, moving with a much better quality of life.

 they introduce calm and certainty into a situation where neither are usually present.

I can’t recommend being referred to palliative care enough. Please don’t assume palliative care and end of life care is the same.

Palliative care is delivered by a range of medical professionals so you can make enquiries via your GP or hospital specialist. It can be delivered in a number of settings – in a couple of examples we heard about recently a local hospice provided support to achieve personal goals to live well – for the patient and their carer and family. It made a huge difference to the lives of the people concerned.

Hospice UK

 

Aspergillosis Patient & Carer Support

Many hands symbolising people coming together and caring and coming together to help each other with their aspergillosis.

Here at the National Aspergillosis Centre, we understand the importance of providing support and pride ourselves on bringing those affected by aspergillosis together.

 

Through our social media channels, our virtual weekly support group and monthly patient meetings, we provide accessible platforms where people can ask questions, share their experiences of life with aspergillosis, and express their emotions and frustrations – with people who understand first-hand. Our members regularly share anecdotal advice and are an endless source of support and encouragement. The NAC team are always on hand to provide information, signpost to resources, and at each monthly meeting, we present on topics relevant to aspergillosis.

We have a weekly support group that meets (virtually) every Thursday at 10am and a more formal monthly meeting on the first Friday of every month, 1 – 3 pm. Everyone is welcome. The meetings are closed captioned, and you don’t have to be a NAC patient – in fact, you don’t even need to be in the UK – we welcome people from all over the world!

Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Alison was kind enough to tell us why, most weeks, she stays up way past her bedtime to join our weekly support meeting.

 

I joined the Aspergillosis Support Group when I was first diagnosed with aspergillosis. I was given zero information, so I was looking for a credible source of information. I was somewhat ill at the time, and one group member assured me that once my medication levels were right, I would get some level of life back.

 

Everyone was so encouraging while still being realistic and honest about the complexities of the condition.

Graham and others from the NAC team could answer questions from a knowledgeable, professional perspective, plus provide information on new research and developments.

 

I don’t know anyone in NZ who has Aspergillosis, so it’s nice to have a group of friends who will pick up on where I am at (health-wise), who don’t need explanations and have encouraging things to say.  They care from a position of relating and understanding that “looking well” doesn’t necessarily mean that I am.

It also helps, when I’m feeling particularly frustrated, to recognise that others are dealing with even more issues and puts things back in perspective.

 

Because the group is essentially British, the discussion often focuses on the NHS, but even that helps keep me in perspective. There is information to be gleaned. NZ has a similar Public Health System, and my current medical team seems to understand ABPA. For all its faults, I am very appreciative of what we have, especially when I have some understanding of systems in other countries.

 

I like the virtual meetings on Zoom because I am communicating with real people; it is not just an anonymous written feed.  We can joke and laugh together and share a little bit of our lives.  The slightly more directed conversations, often prompted by someone’s question, are informative and useful.  This then compliments the valuable articles posted on the support pages and website.

For more details and information on how to join our meetings, follow the links below:

Aspergillosis Patient & Carer Virtual Support Group, every Thursday 10am. 

Aspergillosis Monthly Patient & Carer Meeting, the first Friday of every month, 1 – 3pm.

 

You can find us on Social Media:

Sunflowers, self-advocacy and the cancer diagnosis that wasn’t: Marie’s aspergillosis story

In this podcast by My Rare Disease, Katy, the series founder, talks to Marie about her aspergillosis journey.

Marie talks openly about dealing with the diagnostic odyssey, the emotional impact, the need for self-advocacy and trusting your gut instinct, and how she believes it all began with a sunflower.
When asked to sum up aspergillosis, Marie uses three powerful words that will strike a chord with so many patients with aspergillosis:
  • Elusive
  • Dramatic
  • Permanent
It is an insight into the uncertain journey many aspergillosis patients have to endure before they reach a diagnosis, and you can listen to the episode below or via the link here.

You can listen to more of Katy’s podcast interviews by visiting https://www.listennotes.com/podcasts/my-rare-disease-katy-baker-thapc81FBOw/
If you want to know more about aspergillosis visit our information page here. 

An aspergillosis diagnostic journey

Image depicts a graphic of a pair of lungs, with the text 'An aspergillosis diagnostic journey' Gwynedd Mitchell

Aspergillosis is a rare and debilitating fungal infection that is caused by aspergillus mould. This mould is found in many places, including soil, rotting leaves, compost, dust, and damp buildings. There are several variants of the disease, mostly affecting the lungs, and diagnosis is difficult because symptoms are like those of other lung conditions. 

Gwynedd Mitchell is 62. She has two adult children and lives with her husband in Wales. Gwynedd is no stranger to health problems; she has extensive allergies, has suffered breathing difficulties from six weeks old, and as a child, she was diagnosed with asthma and suffered frequent attacks. But in 2012, she was left shell shocked when she was diagnosed with three aspergillosis variants, allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA) and three aspergillomas (a ball of mould in the lungs).

This is her experience of the aspergillosis diagnostic journey.

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