Withdrawal after a serious hospitalization

[LC80]

Midway through 2025 I was flown to Sydney to ne admitted to hospital with a rare and deadly serious bacterial infection of my windpipe. The short story is during early treatment I went into respiratory arrest, and near death transferred to ICU after intubation. I was sedated for a week and the tube was removed. Due to the rarity of my condition I was kept in isolation in the main during my three and a half month stay. My ongoing treatment as an outpatient will last a total of 12 months of antibiotic treatment, not including the IV treatment I was given in hospital. I have to return to Sydney from my county town every three months for follow up blood tests  and a clinic visit for more medication. Since returning home full time I have become more withdrawn, to the point that I avoid going out if possible. Where I was very involved in community radio all I do now is one two hour shift on air a week. I wouldn't call myself depressed, although I have suffered bouts in the past. Life is different because of the after effects of the infection and the damage caused to my trachea after the stent that kept it open was removed. The possibility of tracheal collapse plays on my mind sometimes, if I am having a low energy day. That is a regular occurrence and an ongoing after effect. My friends and wife, although they mean well, don't understand what I went through mentally. They saw the physical side of my hospital stay and it was very difficult for them, particularly my stay in ICU. "That's in the past now" is what I have been told, however mentally it's not. 

[LC80]

I have been reliving what happened to me a year ago, and the past 14 months of treatment, in my mind recently. I am at a loss to come to terms with my "new" life, and the loss of the future my wife and I had planned. It all seems just too hard at the moment, and I am glad to be receiving some counselling. Planning for a different kind of life just reinforces what I have lost, and it depressing.  

[Pete66]

Reliving your past, dont do that.
I have been doing that lately, never works
I cope by focusing on what I can do, I go online, talk about my hobbies, the things that interest me.
What i have found it that my depression ebbs with the weather. I have issue walking, so leaving the house in wet weather just does not happen, so the depression kicks in over winter. Also any cuts or scrapes heal slowly, annoying.
But once the good weather turns up, I can get outside, do some gardening. A month ago I felt so good that I actually washed the walls in some rooms

[Croix]

Dear LC80~

After such a protracted and serious condition, with much time away from the world in hospital you are bound to feel overwhelmed about making new plans, even with your wife's help. I know I felt that way after I was invalided out of my career with PTSD and all the usual problems

There was no way I could plan, the expereince, which I was still undergoing, was too huge and there seemed no path to anything.  The only suggestion I can give from my own experence is not to try to plan too much, take each thing as it comes, bit by bit and importantly reserve a time each day for something you enjoy. Preferably in the  evening so you can look forwards to it.

It does not have to be anything particularly big, an episode of a tv show, a chapter in a book, talking with  someone about the inconsequential, enjoying a comedian on YouTube ...

It can be hard to think of such things, maybe you wife can help you remember and make suggestions. The important thing it is daily and regular, so you get used to it. It not only gave me a wider view of the world but let me have some sort of control of at least part of my life.

I can sympathise with others not understanding the mental effects, just the physical. It does not mean they do not care, just their own experiences can be limited. My wife had no idea what was happening in my head, and had a very hard time as not only was I difficult to live with but also inconsistent. Even so her constant care was a comfort and a greater help than I realised at the time.

I'm glad your visit to ED on Tuesday went well, even if the nebulizer treatment is very difficult to endure. The results of the CT scan must have been some comfort to your fears.

Croix

[LC80]

Croix, 

          I honestly feel as though any plans I had for the future are now beyond reach. The treatment has done me in and I truly don't believe I will ever be well again. There is no real joy left in life. At least that is what it feels like. We purchased a new caravan earlier this year when I was feeling well, but that will be sold now without ever using it. Such is my lack of desire to travel again, through fear of what might happen if we are away on a trip.

I am slowly becoming someone who doesn't like to leave the house because of my compromised health. I am live in constant in fear and I'm nervous about anything and everything. I am scheduled to stop treatment in late November after another procedure and the availability of good test results. But what then?  In early 2025 life was good, and now I am barely coping day to day. What a mess it has become.

James

[Pete66]

I know you have said it is a rare condition. But I know for myself it was helpful to find people who had gone through similar situation. Talking to real people, rather than medical staff or psychologists, was helpful for me.
You are still in treatment, and it is hard to see that there maybe (I am not a medical expert) a way through this

[Croix]

Dear James~

As Pete66 says you are still under treatment, the whole matter has not come to a hopefully successful conclusion as yet. Under the circumstances it is perfectly understandable to be very worried about a relapse and wanting to be near the right sort of medical help. Even so I'm not sure your home is the only place you can be, and still be in reach of ED.Being at home all the time does tend to concentrate one's thoughts with little fresh input.

I do know my attitude changed after I was given the correct treatment and I became less apprehensive of my behaviors and being triggered. While my circumstances were not like yours I'm trying to say that one's attitude can change after things go from being up in the air and a change to a more stable  set of circumstances.

In the meantime it is overwhelming and trying ot see any way through to a better time can seem completely hopeless, which is why I suggest having a regular evening time to do something you have liked or at least been occupied by in the past. It takes experimentation but can lead to realizing there might be more to life that you currently imagine.

It can help with your daily struggle.

Croix

[LC80]

I have had a lengthy conversation with my Sydney based infectious disease doctor about what I am experiencing physically and mentally. He guides patients through some grueling medical treatments, and he is well aware that I am at an end with nothing left to give. He suggested that I am showing all the signs of PTSD and will need to be treated. He is referring me to the psychology team at the same hospital to get me help. I am extremely frightened about my life and my future and feel like I have no control anymore. I live in a small rural NSW town without any real friends locally. I just have my wife to fall back on and I do not want to burden her with my mental health issues, or I try not too. Life is just a mess.

[LC80]

I can sum up my thoughts about daily life this way. We rent, I have a chronic rare illness that requires a grueling treatment regime and I am a burden on my wife. 

[Pete66]

i understand your feelings, but you can still contribute something to the universe.
I cannot walk, but my fingers work great, I can assist people who enjoy the same hobby as I do. I can read stories to my grandkids

[Croix]

Dear LC80~

Pete66 is right in what he says, and you are going though the most difficult phase of your life you will ever have to face, it will get better, mine did.

My own wife has to compensate for my physical disabilities (spine plus more), doing all the heavy work and a lot of the lighter stuff around the house too.  I did not mention my physical condition before, just my mental one,  but as I'm similarly situated to Pete66 thought it was worth talking about relying on others.

My partner wants to help and does not see it as a burden as I try to make up for it in other was, being cheerful and being fun to be with, getting outside help when things are piling up, and generally making her glad to be a very essential part of the home - plus I have my own interests in much the same way as your pubic radio (which may well become more of you life in the future).

This did not all come at once, but has built up over time and works. At the moment it would be very difficult for you to do this, however it will come in time if you want it to, and makes both you and everyone else in contact with you feel better

I know I'm talking about things that may not seem to help at the moment, I felt that way too.

Croix