Sunday, October 24, 2004


Back in May I wrote a post “Bach was a breath of fresh air”. Since then, I have been trying to come to terms with sleeping with the ventilator. To cut a long struggle short, I eventually thought I was going totally insane … how can you feel like you can’t breathe when you are on a ventilator? Try as I did, I just could not work this out. I don’t know what took me so long to do anything about it, but fact of the matter is I didn’t make it a priority and that is something I will never do to myself again. I let life and mothering and step parenting and all sorts of other things come first. So, I continued to endure the hours and hours and hours, and did I say hours of no sleep at night. On the odd occasion when I did sleep a bit, I would wake up and stagger to the bathroom and chuck two Excedrin down my throat to get rid of the monster headache I would wake up with.

Besides the exhaustion, sitting awake, all night, night after night after night, starts to get extremely lonely. You don’t want to watch any more TV, you are too exhausted to read. If you are wondering why I am suddenly switching to talking about this in the third person, it is because that is how I started feeling. I started feeling separate from myself. My life was something over there, and I was just going through the motions of doing certain things every day ‘cos I know from habit I have to do them. I have to be clean, I have to eat, I have to pay bills, and just keep things ticking over.

I write this post at the risk of it being a little disjointed, but this is the first time I am sitting down to write about the horror I have been through in the last couple of weeks. I have not planned this post, I am just letting it come out and leaving it where it lands. I am not going to re-read it or make any changes to it. This one is for me, and right now, externalizing this stuff feels beneficial to me – but I hope, as always that someone else reading it might find some value in it.

My feet and legs have been swelling over a period of time. Two weeks ago, they got so ridiculously swollen that I realized I needed to see the Doctor. My sister the Reflexologist with a lot of physiology knowledge looked at them and was horrified.

When I was diagnosed with Muscular Dystrophy, one of the things I dedicated myself to, was continuing to love my body as the vehicle I live in. We all know I have never loved it enough to prance around in a bikini, but I felt it was essential to not distance myself from it. I needed it to keep working as best as it could for me, and I have tried to maintain that headspace all the time. This has resulted, I believe, with me generally being very in tune with my body. I know what it needs and when it needs it.

The night before I was due to see the Doctor, my body was telling me it needed sleep. I also reached a point that day where I just could not face sitting awake, alone all night – I just felt like I couldn’t do it. I decided to take a sleeping pill. The reason I generally don’t take sleeping aids is because I wake up with the dreadful headache and that makes it impossible for me to get Ross to school. I believe my body therefore made the decision not to sleep as a way of avoiding these headaches. But this particular night I was taking a sleeping pill and if I awoke with a headache, Marti would take Ross to school so there would be no problem.

We were lying in bed watching TV waiting for the sleeping pill to kick in and suddenly I felt this huge, horrible wave of fear wash over me. I felt like I was on the brink of a panic attack. I started taking deep breaths and calming myself down, but this feeling persisted. I told Daniel I needed him to be next to me, right next to me, like sitting on the edge of my side of the bed next to me. He came around and I explained to him that at the risk of sounding dramatic, I was experiencing this dreadful fear which I believed was coming from a thought that if I closed my eyes tonight, I was not going to wake up in the morning. I don’t remember the detail of the conversation we had, but as always, Daniel managed to calm me down and I did soon fall asleep. I was very happy when I woke up in the morning but was really distracted by the events of the night before.

Why would I have such a real feeling that I was going to die? My body or inner voice, or call it what you want, is always a source of truth. I didn’t even want to think such thoughts so as much as it was there, I tried to put it out and replace it with positive thoughts of well-being.

I got to the Doctor for my appointment and was soon going off for a scan to check that I did not have a blood clot in my legs. Things felt like they were getting really serious and my fear level was mounting. My head and heart were filled of thoughts of my son, and knowing that I did not want to let him down by checking out of his life at this early age. I also didn’t want to leave Daniel so I started drawing on every resource I have to turn this around. I kept reminding myself of how strong I am and how I bounce back from everything.

My scan was ok but my Doctor still felt it necessary for me to go to the Emergency Room. He was not happy at all and we went straight there. I had blood tests, x-rays, and an EKG. The Doctors were amazed that I was able to communicate coherently. Their surprise was based on the following facts:

My Oxygen Saturation Level was at 77%. Normal for this is 98 – 100.
My Carbon Dioxide (amount of CO2 in my blood) was 60+. Normal for this is around 42.
When you carbon dioxide is this high, it constricts the blood vessels in your lungs, which make it harder for the heart to pump blood to the lungs. This causes blood to back-up behind the heart and induces swelling in the legs and feet due to fluid build up.
The reason for the CO2 build up is because I cannot, when I am sleeping, get rid of the CO2. This is as a result of an already weak diaphragm slacking off even further in a sleep state.
The solution is to use a breathing assist apparatus called a BI-PAP. This assists by forcing additional air into the lungs via either the nose or the mouth. This expands the lungs, which assists in exhaling more carbon dioxide.
Utilizing this machine eventually brings down the amount of CO2 in the blood, therefore making more room for oxygen, relaxing the blood vessels in the lungs and allowing the heart to function normally. This process takes about three days of continuous use of the BI-PAP, which is what kept me in the hospital.

If we had not have identified the problem, the CO2 levels once above 70, causes a person to go into a coma which is unlikely they will come out of.

At this point, we realized that the worst thing I could have done that night before the doc appointment was take a sleeping pill and how lucky we were that I did wake up the next morning. The fear was real – my body knew it didn’t need that sleeping pill and it certainly let me know that something was not ok. I truly never want to experience anything like that fear again.

Needless to say, the next three days passed in a bit of a haze. But pass they did, and my levels reached a point where everyone was satisfied for me to come home. I was taken care of by some incredible people in the hospital. The nurses and respiratory therapists and everyone else were just amazing. I was in what is called Progressive Care, or as I called it, the Business Class of Sick Travel. It is one up from a regular ward and one before Intensive Care. You are monitored more closely than on a regular ward and exactly like in business class, the differences are subtle but you do feel them.

I came home convinced now that I should be able to hook up to the machine at home and sleep the same way I did in the hospital. Unfortunately, that was not the case. One minute on the ventilator and again I feel like I can’t breathe. At this point, I start to question my sanity. How can this be? I have just been on a BI PAP machine for three days and here I am saying I can’t breathe on a ventilator. Oh the frustration, the tears, the freak out. The next day Daniel dedicated himself to getting me on to a BI PAP machine at home. It was a case of letting the Rottweiler loose on the medical profession. In short, the BI PAP arrived at the house.

Am I managing on it – YES!
Am I getting sleep – 10 STRAIGHT HOURS LAST NIGHT!
As I sit and write this, I cry tears of relief – again, not to be dramatic. It is 12.30am Monday morning and as recently as 10 days ago, I would be thinking, another night to get through. As the sun would start setting each day, I would start getting anxious about how to get through the night.
There is so much relief in the fear being gone. I know I want to be here. I know that the powers that be want me here - I just KNOW that.

I also know that there is no time for bullshit. I will not let anything or anyone be any kind of energy drain on my family anymore. That might well mean an element of change is going to wash over our very own home, and if that is what it takes, that is what will happen.

The word ‘gratitude’ gets thrown about very easily. This was a reminder to me of just how much I have to be grateful for. I have a husband who so delivers beyond the call of duty. I am in awe of this man, and am so grateful to have him in my life. I have a child who has brought the most amazing soul into my world and he spreads magic in the lives of all who know and love him. I have a mother of 81 years old who displays the strength of a lion and whose capacity to love her children astounds me even after 44 years of wallowing in it. I have a sister who would do anything to provide for anything I might need or want that would enhance my wellbeing. I have a friend called Marti who literally steps in where I have to step aside, sometimes by choice sometimes by necessity, and carries on where I left off. To these people, I stand before you so grateful, so humbled by your kindness, so humbled by your love for me and from the bottom of my (now perfectly pumping) heart, I thank you again and again, and over again.

I know this might be starting to sound like I am about to thank the Academy, but a few more:

Tammy ~ all I can say is, the I80 can’t be bigger than all of this – it is a goal for next summer. Thank you!
Jen W ~ you will never know how many nights you dragged me through. ‘jenw is now on line’ felt like instant relief, night after night, after night. Thank you!
Andi ~ for always having something positive to give me, and encouraging me to never settle for anything less than what I believe I deserve. Thank you!
Alyson ~ for simply hearing me and caring in that quiet, powerful way you do. Thank you!
Jodi ~ making me feel like I have had a friend in NJ for 100 years. It makes such a huge difference in my life. Thank you!
Dave & Rae ~ even at a distance, your wishes for my wellbeing are felt and I take great comfort in that. Thank you!
Yades ~ for being my friendy features. Thank you!
Jen Gray ~ whether you knew it or not, the soul food you provide every day just by clicking here. Thank you!

I’m going to sleep now!