BLEAKLY

IT just gets worse and worse. I am sinking into a black hole that I can’t escape from. Seems that nothing I have tried has worked and the little things continue to go wrong. I have been given the plans for a Mother’s Day which does not appeal to me at all. There is no gift coming from the South. And my mood remains crippling.

UNHEARD. That’s what it is. UNHEARD and UNSEEN. I say ” I do not wish to do so and so ” Next moment, I am manoeuvered into doing that very thing.

I say – ” I need help with such and such “. People say OK. But they don’t do it.

Tomorrow feels like one thing too many for me. I cannot guarantee my behaviour if I go to it. I am way way beyond dealing with the self pity. Way way beyond rallying.  I HATE my life as it is now and bored beyond endurance.  Lonely.Weak and overwhelmed. I am angry and ill with misery. Stark raving mad.

Someone spoke to me today of Dr Doug who is now a psychiatrist at Baringa and I think I may do best to go and see him.

I know that one of the best things I can do it to keep shedding belongings, Life feels more manageable when I have less. Izzy took care of the excesses and enjoyed doing it but I had long ago realised that they confused me and that was before Izzy’s Death and the Coma. So I shall keep shedding.

I need to be clearer about what I will or will not do and pay more attention to what I want to do. Like tomorrow. I wanted to do the markets and the Mothers’ Day Picnic. I wanted to see People.

Its night time now. Dark and quiet. The heater is on and I have bills to pay.Gas. Meals on Wheels. I think that is all.

I also have lawns to get mown somehows. The mowing man hasn’t come back.

They tell me to walk and get exercise. They don’t know that a walk across a room can be like  a Trek across the Tundra.

They tell me to attend to the Hep C when just to get up and make it through a day requires concentrated effort.

Garden ! They say. First up, I have always disliked gardening and secondly – my muscles are so withered that I attempt to pull a weed and it don’t come out.

The last few months I have unconscious use of my left leg again – but that took more than a year. A year of moving something that didn’t feel like a part of me.

And I am here in severe isolation. Meetings are difficult to get to. I am suffering the after effects of drugs I was told were not opioid.

Food doesn’t taste as it once did. I keep very strange hours. My emotions are variable and seemingly not related to the events in my Day.  I pick up infections easily. I tire easily. I look at people when they are talking to me but sometimes I don’t have the least idea what they are saying and at other times, I understand what they are saying – but I just gather data and don’t have any idea how to carry through with it.

My hands are clawed with arthritis. I carry far too much weight and am classified as ” morbidly obese”.

It seems I went from being a Beloved M’Lady and mixing in an expanding and exciting world to – overnight – being a slab of meat – tossed and turned in my own faeces – labelled and tagged and found wanting.

And when I am physically normal enough, the staggering Grief makes its entrance.

These are some of the other contributors to my depression and despair.

  1. sent home from hospital within days of coming out of coma
  2. no physio whatsoever
  3. minimal home care
  4. no visits to any of the specialists that were recommended by ICU.
  5. no follow up assessments.

So – life alone – unmonitored. Conflicting reports.

NO MENTAL HEALTH ASSISTANCE WHATSOEVER.

There are times when I am a little angry.

lynne 20 aug 15

And then I found this site. http://www.ards.org/penpal/survivor.html

That made a difference.

Here are some of the ARDS stories. 

ICU INFO 3

Melanie melanie9_58@hotmail.com

In March 2010, I had bronchitis and was on medication. Later that month I felt worse and had seen 2 different doctors;  one said that I still had bronchitis and the other doctor said I had the flu and told me to go home and rest. On Monday I ran a high fever and went to an clinic and they diagnosed me with double pneumonia. I went directly to the ER and was admitted for observation. By the next night I was put on a ventilator, and was diagnosed with swine flu. I was in an induced coma for 2 1/2 weeks. Mentally I was really foggy and had no idea what happened to me. I was on a regular floor with Bi-Pap and Bn O2 for 2 weeks and was diagnosed with ARDS. When the nurses tried to sit me up in the bed, my oxygen level would drop. I went for rehab for 3 weeks just to walk with a walker and assistance. Then I was discharged home. My daughter was 16 at the time and she had just gotten out of school for the summer. She took me to outpatient therapy for 2 months and I was able to use a cane. I didn’t have to go home on oxygen and for that  I was so thankful, and couldn’t believe I came through this terrible illness. I am currently disabled. I had been an RN supervisor for Home Health for 20 years. My balance isn’t steady. I drive a little. I have problems with short term memory. I feel very anxious and depressed. My family doesn’t want to talk about what happened, and it is very frustrating.

 posted 11/4/2013

Ryan fallowfieldryan@live.co

I am an ARDS survivor. I am 27 and was diagnosed just before my 19th birthday. I was put into a chemically induced coma and intubated for about 2 weeks. Once I was taken off intubation and became coherent, my fight with recovery started. I had lost close to 45 pounds and all muscle mass. I had to reteach myself to eat, talk and all other functions. I am wondering if my side effects and numerous problems are from ARDS or from the medication that was used during treatment. What different side effects have other survivors dealt with (mental, physical, emotional)? Any input would be greatly appreciated.

 posted 4/19/2013

Sherri Perper-Davis sherridavis53@gmail.com

I was hospitalized with ARDS six months ago.I was in ICU for a week, then a regular room for 10 days, followed by a rehab facility for a few weeks. I have not been the same since. My balance is poor and I need touse a cane or walker. I have memory and speech issues, and physically my strength is not what it use to be.  I wonder what my odds are of getting ARDS again.  They told me it is a miracle I survived and I am  forever grateful for that but I’m having a difficult time dealing with the side effects. I would love to hear from someone in the same boat.

 posted 1/3/2013

Angela Rabon dreammom25@hotmail.com

My name is Angela and I am 38. I had double pneumonia in September and by October 13th I got really short of breath, so I went home from work (I’m a nurse). I fainted and my dad found me. He rushed me to the ER where they put me on a vent and in a medical induced coma. I was then moved to a larger hospital where I stayed a week then was moved to Baylor because I was not making any improvements. The doctors told my family they needed to all come say goodbye. I still cry when I think of my daughters and parents going through that. I finally began breathing on my own a month later. When I woke up I could no longer move my body and couldn’t talk. (This was probably a treat for my family. I tend to talk a lot). I had to go to rehab to learn all that again. They told me that I would be there for at least a month, but within 2 weeks I was released. I then was hospitalized again and was in ICU for a week. I finally got out in December. I am now 3 months out and I am still on oxygen and I have a lot of trouble focusing. I am thankful to be here with my family. I have not been able to go back to work yet and I can’t drive yet due to the seizures I had, but I am not on any meds. Sitting around is very difficult for me since I am used to going all the time. I worry that I will relapse a lot. I am very cautious about being around chemicals or smoke that might flair up my lungs. I turned around after prayers were said at the bedside. I could hear them through the coma. I didn’t know who I was praying for but I was praying with them. It is a hard blow to anyone, but the feeling of no one understanding your situation and the fact that just because you are now home that there are still problems is the hardest.

 posted 3/18/2012

Julia jball@signature-graphics.com
I contracted H1N1 and pneumonia, and while hospitalized was also diagnosed with MRSA and ARDS. I am no longer hospitalized and trying to integrate back into my work schedule and am finding it very difficult; much harder than I ever thought possible. I am normally a very positive and outgoing person, but am finding that I am depressed as I seem to not be getting better. I will not accept that “this is the way it will stay” as some seem to say. I won’t believe that.

 

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