Alison Heckler’s Story
Aspergillosis and Depression: A Personal Reflection August 2021
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 and fatigue frustrating and exhausting. Waves of feeling hot, especially at night and 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 & 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. 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 don’t 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)
A 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. 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). Passed experience leads me to think that with time, rest and rebuilding fitness ….. all can be well again.
However the reality is: What is caused by what condition and what is a side effect of medications is almost impossible to identify. 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 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 friends 50th Wedding Anniversary and going back 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 have 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. 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 effects my life. I had had some periods of feeling pretty good compared to how sick I had been when first diagnosed and Flares since then had been relatively short. 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). There are others who 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 helps.
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 that is helping with my thinking on this.
