I vividly recall landing at JFK on a cold Decmber night…It was nothing short of chaos!
It was like thousands of planes were all around us, trying to take off and land, and we felt that being at the control tower during the holidays must be the most stressful role in the world. I was wrong.
If you are chronically ill, a carer and have more than one physical issue going off at a time it is beyond stressful! People like to believe it’s just about laying in bed and sipping chicken soup all day. It so isn’t!
If you have more than one issue you are always trying to manage a dozen symptoms at once.
Back pain. Can’t eat. Vommitting. Balance problems. Vision problems. Can’t walk. Gastric issues. Swollen feet. Fatigue. Tremors. Loss of bladder control. Fever. And the list goes on. I have had times when almost all those on the list have happened at once!
Often people will suggest that you “…go to the doctor if it’s that bad”. But you see, in the real world, the physical act of doing that and waiting for hours in a doctors office (yes. Hours!!!) is beyond the realms of possibility.
So most of the time we wait. And we hope. And we try to stay sane, whilst managing some very difficult situations.
Hubby always asks the pharmacist for information and assistance and we buy enough equipment off the internet that we are a virtual hospital in the home.
Oxygen machines. Pulse monitors. Thermometers. Commodes. Diapers. Heat packs. TENS machines. Needles. Waste bins. Swabs. Vomit bags. Leg braces. Wheelchairs. Sippy cups. You name it and we have had to buy it and use it.
The physical needs hubby must attend to day and night. The coping with pain and emotions, that I must fight alone.
More than one issue means dozens of ‘specialists’, who have their own waiting lists and access issues.
More than one issue happening at a time means I must deal with one pressing emergency and let the others ‘circle’ and get to them in due time.
More than one issue means we deal with most painful and urgent thing first and postpone the hundreds of regular blood tests, scans and appointments that happens every year. In fact I have three new specialists that are waiting to see me for various issues!! Which comes first??!
The picture of resting peacefully with some chicken soup is a fantasy I have never actually encountered.
Far too many people make the mistake of over simplifying the life of someone chronically ill and trying to demean it
The ONLY more stressful role I know of is my carer and husband. He must be a 24/7 365 nurse (although he never trained), he is house keeper, book keeper, cleaner, he deals with ALL the doctors and health Beaurocrats, pedantic pen pushers, heartless officials and various other time wasters… As well as be a full time husband and counselor for me (although he never trained in psychology) when ever the need arises. He sleeps when he can. He must juggle and manage the expectations and misconceptions of anyone and everyone for as long as humanly possible. All this, while having health issues of his own.
Our days are long. Our months are hard. Our years fly by… But we are always trying to direct the human, emotional, financial, and physical traffic that circles our lives on a daily basis.
All I can say is that I am so glad that hubby is at the controls and I will never ever be able to understand how he does it.