Jason Church

Tipping Point - when for a time it just all feels like TOO MUCH

Alison's story with ABPA (T'was the week before Christmas...)

As we journey through life with chronic conditions we can teach ourselves coping strategies

As the strategies work we gain a sense of achievement and I guess a pride that we can do this we can get around this but then something else happens and our planning and our strategies get sabotaged.  I’ve had one of those kind of days today.

• Learn what we can achieve
• What is realistic, and what is not?
• Come up with ways of limiting how much we do at a time so that we can achieve our goals little by little.
• Pace ourselves.

Today is 21 December so only a few days before Christmas. It’s hot in New Zealand and muggy (especially in the Waikato) and I’m trying to be realistic about how much I do towards getting ready for Christmas and taking my campervan up to the family Beach House.  I also want to leave the garden looking nice & tidy so that it won’t be a wilderness when I come back. Garden work can only be done in very short bursts, wearing an FFP2 Mask (very hot in the conditions). To that end, I think I was achieving except that I had developed a sty in my eye.   Conservative treatment of hot packs & drops for dry eyes had not really helped

On day three, talked with the pharmacist and with my GP (via email) as to what I needed to do.  I had drops of ointment on hand that was appropriate but after four days the situation was getting worse and my GP said if it didn’t improve,  I’d have to go to emergency care because there are no GP appointments available.  My son-in-law who is a doctor looked at it and said “That needs to be lanced you probably need to get yourself up to the eye clinic”.  So after talking with my doctor’s Nurse, I went to the emergency clinic (Not the free hospital ED).

Wait time was posted as two hours, yeah that’s reasonable, but stuff happened.  Emergency Clinic had two or three major emergencies come in during the course of the day & I ended up sitting there from 10:30 am until 5:15 pm.  Around 2:30 I talked to the nurse at reception and asked if there was going to be somebody who would be able to deal with this, thinking that if they can’t actually do what needs to be done I should go up to the hospital.  I was assured that it could be done.  At 5 o’clock I saw a doctor and he decided that we needed to try a different antibiotic cream and maybe throw in some extra oral antibiotics and see how I went and if it didn’t improve in five days, to come back and then maybe we might need to send you to the eye clinic

Talk about frustrating!  He had noted that I had complex health issues, I pointed out to him that my body does not respond well to infections, that it was Christmas, and that I was going north to Omaha Beach; but no that was his solution and he wasn’t listening to anything different.   So my planning, trying to be careful that I didn’t push myself too far, and that I didn’t try and fit in too much, just went out the window with an entire day lost at the ER.  By the time I got home, I was hungry, I was exhausted. My eye hurt so much and it could’ve been relieved in a five-minute procedure.

What to do now?  I don’t seem to be sleeping, hence the writing, and I can continue the 3 hourly application of ointment to my eye throughout the night.  (It’s now 3 am and I first tried to go to bed /sleep at 9:30 pm).  How do I balance the need to get my eye sorted before I go North, out of the jurisdiction of my hospital to where the hospital is referred to as “Not Sure Hospital” and the travel time just to get from the beach into town to see Dr over the coming two holiday weeks will increase from 15 minutes to up to 2hours.  To say nothing of how long it might take to get to NSH.  (Normally an hour away)   Do I risk losing another prep day and trying again to get into the Eye Clinic.?  Do I risk my sight or further complications versus getting myself through Christmas not totally exhausted?

NOTE: I started this before Christmas 2023 but when I found the energy to try and finish, I couldn’t locate the file.  Fast forward to March 2024 and I found it in an obscure location, a reflection of the tipping point having been reached by the time I ‘filed’ it.

As it turned out, I went back to my own Dr Surgery the next morning to talk with the Nurse who decided to get me in to see a Dr, who was very understanding and communicative.  He changed the antibiotic to one that was more specific to the issue and explained the protocols needed to get me to the Eye Clinic if needed.  It turned out that a recently added medication was majorly adding to the issue and once stopped I was able to get things under control & not have to go to Eye Clinic in the midst of summer holidays time.

But back to Tipping Points.

When we are dealing with Chronic Illnesses, the treatment to manage the primary diagnosis can often lead to secondary conditions, requiring yet further management treatment   Energy levels are limited and ‘just one more thing’ can totally tip us.  Our carefully planned and balanced strategies get totally up-ended.  How do we manage that?

Let’s face it, at that moment we may just want to give up.  But no, we have to acknowledge where we are at, maybe have a cry or a rant, pray and come up with a new plan while at the same time accepting that things might not turn out the way we thought they should.  (On this particular day, my family invited me to join them for dinner which was very much appreciated.  I also try and have precooked meals in the freezer for such situations.)

In scripture, Paul says “I have learnt to be content in plenty and in need.”

Turning our attitude around is the key.  We want to think that we are in control but situations and circumstances are beyond our control.

Learning to live within the limits of Chronic Illness is a Grief Process but because there is no tangible loss as can be witnessed when someone dies, we and those around us, may not realise the implications   Everyone wants to deal in the facts and the fix-it strategies. Grief is irrational and takes a great deal of working through; although it should be more accurately portrayed that we don’t work through it, as in we come out the other side, but we work to understand how this affects us and how we take it with us into new normals.

I hope this little insight will help you get through a “Tipping Point” day.  Some of that process includes gaining a greater understanding of your particular mix of conditions …. But that is another subject to blog about at a later date!

by Jason Church

Chronic illness diagnosis and grief

Many of us will be familiar with the process of grief after a loved one has died, but did you realise that the same process often happens when you are diagnosed with a chronic illness such as aspergillosis? There are very similar feelings of loss:- loss of part of your health, loss of the person you once were, loss of independence and uncertainty about the future.

1. Loss of health: A chronic illness diagnosis often means facing the reality of living with a condition that will impact your physical as well as your emotional well-being. This loss of health can be significant and may require you to adjust your lifestyle, daily routines, and expectations for the future. Adjusting to a 'new normality' is difficult for some. For aspergillosis most mention that they run out of energy much more quickly as each day progresses, so they must plan to conserve energy each morning.
2. Changes in identity: Chronic illness can affect how you see yourself and how others perceive you. It may require them to redefine their identity, roles, and relationships, which can be a challenging and grief-inducing process. For some of your closest relationships, there can also be a grieving process that they have to go through as well.
3. Loss of independence: Depending on the severity of your aspergillosis, individuals may experience a loss of independence as they rely on others for assistance with daily tasks, medical care, or mobility. This loss can lead to feelings of frustration and sadness. This also impacts the people living closest to you e.g. your spouse or partner, as they must also come to terms with a change in your roles. Loss of independence can be emotional, physical and financial.
4. Uncertainty about the future: Aspergillosis is not currently curable (though a few with aspergilloma may have the option to have surgery) and involves ongoing management and uncertainty about disease progression, treatment effectiveness, and long-term outcomes. This uncertainty can contribute to feelings of anxiety, fear, and grief about the future.
5. Social and emotional impact: Chronic illness can affect relationships, social interactions, and emotional well-being. You may suddenly feel isolated as many patients describe not being listened to or understood by friends and family. You and the people you are closest to may grieve the loss of social connections, support systems, or the ability to participate in activities they once enjoyed.

It's essential for individuals diagnosed with a chronic illness to acknowledge and validate their feelings of grief and seek support from healthcare providers, loved ones, support groups, or mental health professionals as needed. Addressing and processing grief can help individuals cope with their diagnosis, adjust to life with a chronic illness, and find meaning and purpose despite the challenges they may face. Failing to properly address a grieving process can lead to a deterioration in lifestyle and depression.

How might you manage chronic disease and grief?
Managing grief after a chronic disease diagnosis can be a complex and ongoing process, but there are several strategies that can help individuals cope and adjust to their new reality. Here are some suggestions:

1. Acknowledge and validate your feelings: Allow yourself to acknowledge and express your emotions, whether it's sadness, anger, fear, or frustration. Remember that grief is a natural response to loss, and it's okay to feel a range of emotions, some of which may be unexpected both in yourself and in those closest to you.
2. Seek support: Don't hesitate to reach out to friends, family members, support groups, or mental health professionals for support and understanding (and medication or other treatment if needed). Talking to others who have experienced similar challenges can be validating and provide valuable insights and coping strategies. The National Aspergillosis Centre in Manchester, UK runs a collection of very busy support groups for people with all kinds of aspergillosis (Chronic Pulmonary Aspergillosis (CPA), Allergic Bronchopulmonary Aspergillosis (ABPA), Acute Invasive Aspergillosis (AIA or IA), Severe Asthma with Fungal Sensitisation (SAFS), Aspergillus bronchitis and more. The support groups are accessible via Facebook and Telegram and include Video conferencing groups twice a week. In these groups, you can meet with fellow patients who have been living with aspergillosis for many years and are very open and friendly plus NAC members of staff for any questions that you may have.
3. Educate yourself: Learn as much as you can about your condition, treatment options, and self-care strategies. Understanding your illness and how to manage it can help you feel more empowered and in control of your health. The National Aspergillosis Centre runs an informative website to help guide you to the best sources of information at aspergillosis.org.
4. Develop a support network: If you can, surround yourself with supportive and understanding friends and family who can offer practical help, emotional support, and encouragement. Having a strong support network can make a significant difference in coping with chronic illness. Sometimes impartial professional help from a counsellor can be beneficial when making decisions.
5. Take care of yourself: Prioritize self-care and make your physical and emotional well-being a priority. This may include getting enough rest, eating a balanced diet, engaging in regular exercise (as appropriate), practicing relaxation techniques, and finding activities that bring you joy and fulfilment.
6. Set realistic goals: Adjust your expectations and set realistic goals for yourself based on your current abilities and limitations. Break larger goals into smaller, manageable steps, and celebrate your achievements along the way. Many patients find it helps to get through the day better if they use spoon theory to better manage the amount of energy they may have each day.
7. Practice mindfulness and acceptance: Practice mindfulness techniques, such as deep breathing, meditation, or mindfulness exercises, to help you stay grounded and present in the moment. Acceptance doesn't mean giving up hope, but rather acknowledging and embracing your current reality while focusing on what you can control.
8. Seek professional help if needed: If you're struggling to cope with grief, anxiety, depression, or other mental health concerns, don't hesitate to seek help from a mental health professional. Therapy can provide a safe space to explore your feelings, develop coping strategies, and find support.

Remember that managing grief and adjusting to life with a chronic illness is a journey, and it's okay to seek help and support along the way. Be patient with yourself, practice self-compassion, and take things one day at a time.

Lived experience from Alison

First, we might need to define what Grief is..

We use the word grief but what is our understanding of it? I think that definition & understanding change as we experience more of life’s difficulties. One of the definitions that is used is “A tangled web of emotions”. Anger, sorrow, disappointment, tears, frustration, loss of identity, mood swings, confusion, depression, resignation. The list is almost endless and it is not in any neat order or timeframe progression.

Another factor in our consideration is guilt, some of which is generated by our acceptance and adherence to what have become “social norms”. There seems to be a denial of the inevitability of death & deterioration of our physical bodies. So when these factors become very evident in our daily lives we want & expect to be able to fix them and avoid the consequences. When this doesn’t happen, we grieve &/or feel guilty that we can’t meet those expectations So we need to “Process our Grief” but again; what does that phrase mean?

For every individual, it will take different forms because every situation is unique to that individual. the relationships involved, the extent of the disease, how it manifests, and how it progresses. How we view life. Processing our Grief requires the difficult discipline of looking at what our core beliefs on life are, what are the losses and shifting those concepts from 'head knowledge' to a 'heart acceptance' as well as adjusting to practical implications & changes. All of which will take time and energy, and is exhausting. From my experience I can suggest the following:

• Having a Support Group filled with people who have walked the path before you is a huge help.
• Reading articles about your condition and how to manage it.
• Talking with a friend.
• Journaling the process is also useful as you can look back and see progress and things that you were going to try to do but haven’t yet evaluated. This can also be very useful to refer to when talking to your health professional.

All these activities will help us come to terms with our Chronic Disease.

Another factor that comes into dealing with a Chronic Illness is the nature of the condition and its perceived significance in society. Before I got the Aspergillosis diagnosis, we were told that it was Lung Cancer. When that changed to Aspergillosis my daughter (Palliative Care Physician ) said that the Cancer diagnosis would have been easier! The reason for this is that Cancer is a socially understood condition, there are extensive supports in place, major fundraising and awareness and people rally around. There is a clear pathway towards treatment and expectations. (Similarly with Heart Disease & one or two other well-funded conditions).

Lung conditions on the other hand have a stigma that you haven’t looked after your lungs, therefore you are to blame and/or it just means you don’t breathe very well but it can be managed and doesn’t have a huge impact on your life. Think about how the Anti Smoking Campaigns are presented.

Chronic lung conditions also have a higher prevalence where living conditions are poor and I see that as influencing how much time and resources can be put into awareness campaigns and research.

Thank you to NAC with the National Aspergillosis Support (run by the NHS) & Aspergillosis Trust Support (run by aspergillosis patients on Facebook) for reliable information, guidelines, research developments and patient stories www.aspergillosis.org www.aspergillosistrust.org

Useful links on grief and guilt

MIND 'What does grief feel like?'

Psychology Today 'Chronic illness and grief'

Arthritis Foundation 'Grief & Chronic illness'

NHS Every Mind Matters 'Mental health and physical illness'

by Jason Church