Birth’s, Marriage’s and Death’s

I have been dealing with all manner of emotions lately.

I’m not good with writing about this stuff anymore than I am dealing with it. What they all have in common is that they bring people together and that is partly the problem with me. I can’t even manage that.

The morning of my “real” birthday 29th February we got the stunning news that our nephew had died. He was only 26 and just starting out in what looked like an amazing life with his partner of 8 years. Last summer he found a lump in his testicle and immediately saw his GP. Within the week it had been removed and it was shown to be malignant. He had further tests and a few months later they found it had grown some more and decided to treat it with chemotherapy. They told him that he had a 99% chance of survival.

After his second course of treatment he started to complain of heartburn and that morning he stood up to reach for something from his bed and dropped down dead. He fell face down between the bedside table and the bed and his partner couldn’t even turn him over as he was wedged in. In any event he was dead from a heart attack. As with any young death it hits very hard and I don’t think our family will ever be the same again. They gave him a wonderful funeral. A celebration of his life. I would have loved to have been there but I decided that it could not be. People need space to grieve and I would have been in the way. Also I would have been weeping and that is never good when you are on oxygen therapy. A bunged up nose is no use at all and the whole thing can trigger a panic attack so I stayed away.

On a much happier note I was made a Grandma again. Jacob Alex came rushing into the world within 20mins of arriving at the hospital and was home in time for tea and a cuddle of his big sister Lola. I got to hold him the following Saturday which wasn’t too bad. I was very grateful that I was well enough to travel otherwise it might have been sometime before I saw my Grandson.

A week later and we had a wedding to go to. My friends daughter was tying the knot at a city church and afterwards in rooms upstairs opposite the castle. I had more or less decided because of the inclement weather of late that I would miss the church but would go to the reception. Unfortunately after talking with her it soon became apparent that there was no way I could go. There was no lift and no disabled toilet. So that was that. Another get together I have had to miss out on. I hate to moan or dwell on stuff I can’t change but I think it’s hard for others to realise just how isolated a disabled person feels and how lonely it can get.

With this in mind my thoughts have been turning towards getting a little companion. I have ruled out a dog as I consider them as children who never grow up. I can’t exercise or groom a dog so a cat seems the ideal choice. We used to have a Siamese cat who lived to be 17 and was loved dearly and then we got a rescue cat who didn’t last 5 years. It’s been 2 years now since she died and we are ready for another bundle of fluff to invade us. I have been looking at different breeds and the “Bengal” is the one I have chosen. Their coats are stunning and they appear to have lovely temperaments. So it happened that Sunday afternoon we took a ride out to visit a cattery that breed them and had a wonderful time petting the kittens and talking to the breeder about them. We have decided that we will wait for the next litter and then pick one, hopefully ready to take home by the Autumn. Watch this space 😉

We are born we live and then we die…natures way….take care 😉

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Missing

Hello everyone,

I have been for the most part absent for sometime now and hopefully that is now coming to an end.

I have been in hiding and not wanting to address any difficulties I was having.

Suffering recurring exacerbations and now a bout of pleurisy has seriously floored me to the point where I lost most of my will to live. It didn’t help that I lost my young nephew on my birthday either.

My rock and love of my life has also been struggling and has been signed off sick with stress and exhaustion so you can see what I was dealing with.

I did get some good news in the form of a CT Scan which showed that the shadow they found over a year ago has finally gone. I greeted this good news with glee as one of the transplant co-ordinators had said that if that happened “I would get to meet the surgeon and be listed” before this. When I reminded them, I then got a rebuff saying that my Transplant Consultant will want to see me first. I feel betrayed and lied to but I am in no position to object. I just have to take it all without a whimper and hope that when I go, in just over a weeks time this will be implemented. I am so tired of repeating the same thing over and over and to feel there is no progress. I cannot help feel that it might be best to just forget the whole thing. At least then I wouldn’t have the stress or worry over it. I am sure some folk think I am just making the whole thing up. *sigh*

So…. Wednesday I was made a Grandma for the second time. Jacob Alex sped into the world at record speed and was home in time for tea. lol. I already love him and I havnt’ had a cuddle yet. Tomorrow is the big day when he and I are acquainted and I get to exercise my voice some, with nursery rhymes.

I got a new toy this morning.

https://www.facebook.com/note.php?note_id=296854930383954

It’s a nifty little number which lets me via Bluetooth wireless technology to pair my iPad with a speaker system. Listening to my tunes without having to tether my iPad to an electric current is now amazing. All those wires are now a thing of the past and the sound is excellent for something which is affordable and very girly pink. (they do other colours too) Hahaha.

I hope now that we are well into spring we get some good weather soon. I have a wedding to go to next week and I don’t want to miss it.

Be good.

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“Never Give Up! Never!”

This was written by…Vijai P. Sharma, Ph.D, a yoga teacher, psychologist and a person with emphysema (In that order of priorities)

Excellent advice.

“Never give up! Never!” This was the best promise I offered to myself in 1994. However, my promise does need reminders and prompts from me.

How about you? What is your promise to yourself? If you haven’t made one, now is a better time than ever time to make a similar promise to yourself. You deserve it!

I would like to share some personal details of my emphysema/COPD journey with you in the hopes that it provides you something helpful in your own journey, my fellow travelers!

From Despair to Hope

I had noticed out of the ordinary breathlessness since my teenage years. Retrospectively, it appears that my subconscious way of dealing with breathlessness was to do less of whatever made me breathless. I didn’t participate in any sports. Whenever I was roped into informal group games requiring swift motion or physical activity, I would get out as soon as I could. I thought I got out of breath because I had a weak heart. Other than the exertion related excessive breathlessness, I felt and looked healthy.

In 1994, I was becoming quite anxious, finding myself becoming increasingly breathless even during mild exertion. So, I decided to build my stamina. “What could be a better way to build stamina than jogging,” I told myself. The following morning, I went out to jog. I couldn’t do even light jogging for five minutes without feeling uncomfortably out of breath. I would stop to rest a bit, and start again. Subsequently, I attempted this on several occasions with no significant improvement. I could walk but I couldn’t jog. That’s when I got an appointment to get my first lung function test.

Here I was; at age 53, diagnosed with emphysema, which had been hiding under my nose and progressing steadily for who knows how many years. They said because of the destruction of air sacs (alveoli) and airways obstruction, my lungs were as if I were a 76 year old man. It was quite a come down for someone who is used to hear, “You look like you are not over 40” to be told, “Your lungs look like you are 76.”

In an attempt to soften the blow, I asked if the destruction in the air sacs was primarily in one lung. They said it was in both lungs. I tried again, “Is this obstruction and alveolar destruction in the top of the lungs, middle or bottom?” They said, “It is everywhere, all over the lungs.” I asked, “Could it be an error, like a wrong reading of results or a lab error or some sort?” Pointing to the x-ray plates on the table, the doctor told me, “It’s right there on the X-ray plates. It’s visible to the naked eye.”

Many questions such as these came up as I left the doctor’s office: “What can they do to recover my lung function?” “Is there anyway to build the air sacs back?” Can we clear up the airways obstruction?’ Should I visualize growth of new air sacs as cancer patients visualize destruction of cancer cells and get cancer free? Is there an herbal “Roto Rooter” for cleaning up the gunk in my airways?”

It dampened my spirit to hear “Your Emphysema (or your COPD) is a horribly progressive disease! With treatment, you can slow the progress of the disease. Keep your airways clear to maintain and protect your lung function.”

Soon, my usual optimistic attitude surrendered to pessimism. Pessimism turned into depression. From 2 or 3 puffs twice or thrice a day, my use of bronchodilators had increased to 3 to 4 puffs 4 times a day. On a bad day, I used them as much a 5 times day. I was getting sometimes breathless from just moving about the house. Cold, heat, humidity, dryness, pollen or anything even slightly disagreeable in the environment was bothering me more than before. The airways had become pretty “hyper responsive.”

I had to constantly deal with my psychological “demons,” depression, anger, frustration, worries, anxiety or feeling a loss of control and lowered self-esteem. Being a psychologist, I could recognize that my negative emotions directly affected my breathing and tried to handle them.

Fortunately, two friends of mine, trained as respiratory therapists came to visit us. As they were leaving, they said, “Think lung rehabilitation.” Those three words coming from friends reverberated in my head continuously and became the turning point in my life. In addition to the treatment I received, I found an additional source of help, ME! I have finally recruited me to help myself, and now it has assumed the leadership role in my treatment and rehabilitation team!

Take home messages:
1. If you notice shortness of breath while performing mild to moderately challenging activities, ask for a lung function test. We must “catch” the disease before substantial impairment occurs. If you know a friend or relative in a similar situation, encourage them to get tested.
2. Upheaval of negative emotions such as depression, anger, frustration, worries, anxiety or feeling of loss of control and lowered self-esteem are natural. We don’t need to be embarrassed by them. They are quite common. Don’t hesitate to seek help.
On the Road to Self-Empowerment

There was no pulmonary rehabilitation program near where I lived, so I read everything regarding lung rehabilitation and exercises from libraries, Internet and patient associations.

I increased the duration of my walking. I selected specific exercises to strengthen my arms, legs, abdomen and chest. I especially focused on making my diaphragm and ribcage more flexible and strong. I began to do yoga postures and breathing exercises that I had given up some years ago due to exertion avoidance. I lifted light weights. I joined the gym at the local YMCA where I could have access to different types of treadmills and muscle strengthening machines.

Don’t let me give you an impression that it all flowed smooth and nice. It was a tough road. The first day I went on treadmill, it was the longest three minutes I have ever spent. My legs were feeling tired and jammed and I was feeling short of breath. I made my goal of staying on it for 5 minutes and to go as slowly as I needed. In just a few days, 5 minutes were stretched to 15 and in a couple of months I could go on up to 30 or 35 minutes. I made an interesting discovery about endurance and stamina. Having followed a regular exercise routine for a few months, I discovered that the first 5 minutes were the hardest, then next 5 minutes were easier and next 5 minutes were still easier. However, it required careful attention of the breath and know when and knowing how much to slow down so as not to run out of breath. I call it “breath awareness” and “breath management.” We will discuss it later in detail.

I performed a different set of exercises on each day of the week and thus covered a wide variety of light to moderate exercises during the span of the week.

At the same time I studied extensively to understand my disease, medication and treatment options. For example, I learned the most efficient way of using bronchodilators so I could get the most from my puff. I learned to recognize the beginning of an acute exacerbation of COPD symptoms and seek medical treatment as soon as possible.

As I developed more understanding of the disease and available treatment, I began to feel I had some control over how I spent my day. Even on a bad day, I get to choose. I realize it’s my choice: I could spend the day being sick and complaining or focus on trying to get better. I like to choose the latter. On a bad day, I spend most of my time on regulating my breathing, doing light stretching and lots of relaxation exercises to get some relief from symptoms.

I rarely get depressed now. I am no longer angry about why I had to get emphysema and over the things I failed to do in taking better care of myself. To a large extent, I have accepted my disease. I know the word “acceptance” sounds scary, but I don’t want to waste my “breath” yelling and screaming inside myself. Someone said it so beautifully, “What is, is! Now it’s up to me!”

Translation: Now that I have it (my emphysema) I want to focus on doing everything I can to take care of it. I am past the stage of questioning. I spend my energy looking for answers and solutions to practical problems of everyday life.

I am working on reducing my emotional reactivity to frustrations and obstructions in my way. “Obstruction!” That’s a loaded word. Obstructions are not found in the lungs only; they are everywhere!

In the serious vein, I have come to realize how much my emotions affect my breathing. I am learning to regulate my emotions. It’s a constant work. I am an anxious person by temperament, but by doing muscular relaxation, breath relaxation and mental relaxation, I don’t let the anxiety get out of hand. Breath related anxiety has lessened quite a bit. There is a little self-confidence growing that eventually I will be able to get the breathing back to my normal. Fortunately, I don’t have other medical problems like heart disease, high blood pressure, diabetes, etc. to additionally complicate the breathing problem; mine is only the pulmonary obstruction.

Take home messages:
1. You yourself have to pave the road to self-empowerment. It’s hard work! However, you will receive ample rewards for your hard work!
2. The road to self-empowerment is paved by knowledge, intelligent action and persistence. The raw material used for paving is books on your illness, treatment, self-help books and relevant Internet sites, exercise machines and all the self-help tools you can find.
3. Emotional regulation, stress management and relaxation skills can provide significant relief for breathlessness and other breathing discomforts.

Controlling Symptoms and Maintaining Lung Function

Coping with the disease is a process of learning. When I was told I had emphysema, I knew nothing about it. I had heard the name and thought it was a disease suffered by elderly people in nursing homes.

In the beginning, I didn’t want to know about it or was too scared to learn how bad it can be. In last few years, I have been more determined to learn everything I can to handle my disease. I can now identify what has helped me in controlling my COPD symptoms and preserving my lung function.

Here are the things that have benefited me. Maybe they might be of help to you as well.

1. I have to put in a lot of time and effort in keeping better health. I spend about 3 to 4 hours every day on different self-help tools such as walking, breathing exercises, flexibility and strength training, weights and meditation. However, when my symptoms worsen, I spend as much time as it might require.

2. I have worked out a plan for the bad days; that is, the days when symptoms are aggravated. It gives me a sense of control and satisfaction that I am doing something about it and not just taking it “lying down.” I spend the entire day (and even hours at night) working on opening my chest, slowing my breathing, relaxing the mind and body, visualizing the symptoms dissipating and meditating to slow down the heart and so on. I don’t mind spending the time. What else is there to do? After all, when you can’t breathe, nothing else matters.

3. I practice “24/7 pro-active breath management,” rather than trying to manage it when my breathing begins to go haywire. I am constantly aware of how I am breathing. By closely monitoring and promptly correcting any irregularity in the breathing pattern, I can avoid severe breathlessness. At such times, I try to stay calm, relax and try to breathe slowly. I work on stabilizing my breath. It has really served me well to recognize a ‘breathing attack” before it starts to escalate.

4. I have learned the hard way that I must treat a COPD “flare” (acute exacerbation of symptoms) aggressively and immediately. Earlier I had a stoic approach and a fond hope that symptoms would clear up. Sometimes I was foolish enough to believe that the symptoms were getting better, while the infection was slowly brewing in the silent areas of my lungs. Once I found out that I might be harming my lungs by delaying the treatment, I began to get to the doctor right away. Don’t lose valuable time! Treat a COPD flare right away.

5. Relaxation exercises are mandatory for me: I do mini-relaxation sessions, 5 minutes each time, at least three or four times a day. I do at least two full sessions, 15 to 20-minute relaxation sessions a day. In relaxation sessions, I physically and mentally relax for 10-15 minutes and then do 5-10 minutes of smooth, relaxed, slow and deep breathing. I try to relax physically and mentally when resting. At night, when I can’t sleep, I stay in bed and try to do my relaxation session as long as needed until I fall off to sleep. Sometimes, I can’t fall off to sleep, then relaxation is an all night affair with me.

6. When I pace my breathing I can perform an activity longer. I exert according to how strong or weak I feel at the time. I call it my “exertion strategy.” While performing an activity, exercising, walking or engaging in any other type of exertion and effort, I modulate my speed and breathing so I don’t make myself breathless but still work at a moderately challenging level .

7. I have a tendency to stress out easily, so I do stress management all the time. I have realized that in order to regulate my breath, I have to regulate my emotions and manage my stress level. Anxiety, worries, panic depression, anger or any type of excitement can easily disturb my breathing, so I constantly work on it.

Summary

I pay relaxed attention to my breathing. Practice 24/7 pro-active breath management. Maintain breath awareness at all times. The moment I notice even a slight unwelcome change in my breathing, I start regulating it gradually and steadily. Constant awareness of breathing helps me to promptly adjust and adapt to the demands of different situations.

I struggle and try to get on top of my illness. It’s not easy and I don’t always succeed. “Never Give Up! Never!” It is a promise I made to myself. I try to keep it as much as I can, but I often need reminders and promptings from my loved ones.

If you haven’t made already made a promise to yourself, this is the best time to do it.

If you have already made a similar or better promise, now is the best time to remind yourself and remember to give yourself many reminders and prompters to keep the “fire” burning!

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15 Things You Didn’t Know About Me.

The idea was borrowed from a fellow blogger. Thanks Ryan, I couldn’t manage 30 so 15 will have to do. 🙂

I am a Leap Year Baby and I will be 14 next year.

My Father was born in 1901.

I have no Spleen

I have had 6 major operations.

I have not got a single qualification

My favourite colour is fuchsia pink.

My favourite band is Faithless.

I’m an agnostic and keep an open mind on all possibilities.

I gave my gay brother away at his wedding.

My favourite author is Patricia Cornwell

I have an IQ of 142.

I have COPD which stands for Chronic Obstructive Pulmonary Disease. It’s an umbrella term for anything to do with the respiratory system.

I have just 10% lung function left and need a transplant.

I have four children. One girl (the eldest) and three boys ranging in age from 34 to 14. who all have the same father.

I met my husband when I was 15

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Fingers Crossed

I think I have had some good news. I say think because right now I only have one persons say so.

Jon has been trying to find out what went wrong when we went for my review appointment at the Transplant Hospital. It appears that there was an administration error (isn’t there always?).

When I saw my transplant consultant it was clear he had no idea what was going on, but made a good fist of trying to help me. All this without having any of my latest X-rays or CT Scans to examine.

It appears that my consultants admin had sent these digitally and the admin there had to accept them. This didn’t happen so the whole process has to be chased up and done again.

The good news is that it wasn’t an entirely wasted journey and it was noted how much fitter, stronger and brighter I was than a year ago. All this goes a long way in convincing them at the next meeting. I am to look forward to hearing from my transplant Co-ordinator shortly.

So fingers and everything else crossed. 🙂

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What a Palaver!

So I have been to the hospice four times now and it has certainly been a hit.

If you had told me 5 years ago that this is what I would be doing I would have been horrified, but I’ve come a long way in that short time, and I am honestly so grateful for what these people do.

I have talked before about how difficult I find moving from A – B and the whole process of someone…no less a stranger coming to pick me up and take me there is a very big deal. Nevertheless I was determined that this thing was not going to stop me from going so I, as always had everything mapped out like a military operation. I apologise if what I am about to describe bores you, however I thought it needed explaining just how debilitating COPD is.

Toby was my mainstay as he was the last to leave the house of a morning, so it was down to him to get me installed downstairs and waiting for “my driver”. He was fantastic and wouldn’t leave until he was sure I had everything and I was concerned I had made him late for school.

So there I sat in my living room. The huge tv on, a coffee table in front of me with my iPad and a hot drink, my portable oxygen at my side and my coat and scarf on the other. I was happy to answer my emails etc on line and glance at the tv now and again until it came round to 9:30am when he was due to collect me. I managed to get my scarf and coat on with some wrestling, my frozen shoulder making me wince and cry out with the pain.

10 minutes goes by, I hear the refuse lorry come and go and still no one. Then I got a phone call from the Hospice. My driver is at the door and can’t make himself heard. It was no wonder with that great lorry humming away. I tell them that I can’t get to the door and to tell him it’s open and to walk in and find me. This they did and the next thing I hear is an American gentleman’s voice calling me and then appear.

Tall and lean and a lovely smile he introduced himself to me as Walter and after the pleasantries were over I explained what needed to go with me and how I was to get from there into his car. I can walk short distances if I can sit at the end and regain my breath which can be quite some time. Well it feels like a long time. Maybe a few minutes, I have never timed myself. All I know is that I feel like I am keeping everyone waiting and I hate it, but there is nothing to be done about it.

He went out first and stowed the spare oxygen and my handbag and came back for me. I switched over to the portable cylinders and braced myself for the walk.Walter carried the oxygen bag and I was up and away out the door and into the car. There was a lady already seated in the back and immediately I smelt her perfume. At the same time my lungs ran out of air from the effort of moving and I was left gasping and trying to regain control with my pursed lip breathing. Walter all this time stowed my oxygen at my feet and waited for me to regain some air. I’m afraid the perfume brought on a panic attack and it was some time before he could hand me the seat belt and pull it around me to buckle me in and shut the door. What a palaver!

We get underway and the Sat Nav takes us here and around, up and down dale and eventually we reach our destination.

A wheelchair is found for me so fortunately no more walking for me until I go back home and I am taken into the warmth of the Hospice, which I will blog about next time…

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A Sham of a Week

I’ve had a hell of a week. It started well, went to my hospice on Monday for the day (more of that later) and really enjoyed it. It all kicked off after that.

We had intended to travel over to Manchester on Monday evening, however by the time we all got home no one was feeling much like packing a car and travelling for 2 hours, so we put it off until the following morning.

I had an appointment with my transplant consultants on the Tuesday afternoon. We arrived in good time at our destination but discovered we had left the referral letter behind. This proved to be even worse when it became evident that we were not even expected by my doctors. It was all a bit of a sham really and I intend to get to the bottom of it but suffice to say it was a wasted journey and one I will have to do again at a later date.

To add insult to injury on the way home and fortunately for me nearing the end, I ran out of oxygen. I didn’t realise until I felt weird and when the oximeter was put on my finger my SATS were 79. Was I glad to get home.

I have been slowly getting over all this. It really must have upset me because I have been quite tearful and not really wanting to talk much. I’ve been off my food and generally depressed. I have also been dealing with another incident that has reared it’s ugly head yesterday evening. I don’t want to talk about it much, but it’s a family thing that has reemerged after nearly 14 years. It has affected me badly and I need to watch myself and make sure I don’t withdraw like I am prone to do at such times.

Music and laughter seems to be the cure and there will be plenty of that coming up in the next week and beyond. We have house guests all next weekend and I have my Christmas dinner at the hospice to enjoy after that.

We have done no preparations for Christmas as yet. We will be spending Christmas and New Year with my husbands sister and her family so we don’t have to think of food just yet. There will be presents to get and cards to write…

I have a lot to be thankful for and that is what I will try and keep in mind.

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