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 what I 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?
نوٹ: 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 ٹائپنگ پوائنٹ 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!