A Hospice is Not Just for the Dying

A few months back a Copd friend told me that she attends a day hospice. At the time I was puzzled as the only hospices I knew of were those where you went to die. She talked about having massages, reflexology, arts and crafts and trips out. How they had helped her to obtain aids for her home and turned her life (which had become intolerable) around. They had managed what her Doctors and care in the community had failed to do and she was indebted to them. She urged me to give it a try so I looked it up on google.

It took me a while but eventually I found “Dove Cottage“. It sounded perfect and I took down the telephone number and handed it to Jon. He talked to someone who said they would like to come and see me and a date was made.

Nicola arrived one Monday afternoon having let herself in under Jon’s instruction and found me in my bedroom. She perched herself on the bed and we had a good old chat about what the hospice was like and about myself. She explained that it was for anyone with a severe chronic condition. It sounded perfect from her description and she gave me a brochure to read later. She asked about my medical and oxygen needs and it was agreed that I go and visit that coming Thursday. At this point my son Oliver arrived home and came up to tell Nicola that one of her car tyres was flat. He offered to change it for her and I was so proud of him.

So Thursday arrived and it was a sunny day. It took us about half an hour to travel there most of it through open countryside. The hospice is set in its own grounds on the site of an old farm near to the village of Stathern in the beautiful Vale of Belvoir. To find it you first have to traverse this really high humpback bridge that spans the unused Grantham Canal. Having conquered that the going is easy. Directly afterwards is a purpose build place that is the Coffee Shop. This helps fund the entirely charity run hospice. Passing this and reaching the end of the lane you find the hospice. Oliver followed signs to a drop off point and he parked up and got me ensconced in my wheelchair. The entrance door was wide and automatic, and led into a hall way with lots of rooms off. We found Nicola who took charge and proceeded to show us around the building describing what the various rooms were for and introducing me to the various members of staff, some who were volunteers.

I was also introduced to some of the visitors/patients along the way who were engaged in various tasks such as playing board games, embroidery, tile mosaics and air fix models. It was at this point near to lunch time so Nicola invited me to stay for lunch and Oliver left me, promising to return around 3:30pm. They put me on a table with three guys who turned out to be great fun and the three course roast pork lunch was wonderful. We were offered wine or beer and it was a real treat.

In the afternoon we had a quiz and some folk went for a massage. I came away feeling that I would love to return and a date was set aside for me to visit every Monday. A driver would be arranged to collect me and bring me home again.

Needless to say I was ready and waiting for Walter my driver when he came to get me on the first Monday. He was a lovely guy who put me at my ease and let me do stuff at my own pace and locked the door for me. I found out he was from the US and was in the military and flew fast planes to the falkland isles to take pictures during the war. He would do it in 5 hours. I shall enjoy hearing more about his exploits on future trips.

I have now been twice to the hospice and I have loved every minute of it. I will let you know more about what goes on in a future blog

I will be attending their Christmas fair this Saturday so if you are in the area do come along.

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Unblocking the Writer

Has the writers block come to an end? We shall see.

Whenever I felt like coming here and writing about my life it all seemed to be too much. It’s hard to explain but if I don’t think about it then it’s not happening. It’s different being in the groups, there, we are discussing any little thing and I don’t have to focus on me. I will try not to let it lapse again.

A good deal has happened since I published my last proper blog. I still havn’t actually finished the tale of my journey around Timperley on that warm sunny day. I guess it might never get done so I will end it now by glossing over the trivia and just say that I found out that one of my best friends from high school had died just 10 months previously from lung cancer. Her mum answered the door and it was such a shock to see this little old white haired lady in place of Dory’s mum. She was so cool back then. I remembered we would do chemistry experiments on her kitchen table. She had had a grammar school education and knew her chemistry stuff well. We had such fun. Dory was one of my bridesmaids and a good pal to have. I’m very sad she died so young.

There seems to be death around me a good deal at the moment. We have had one or two folk who belonged to the group die very recently. All lung related. Rachael was only 23. Kathy was 40/50’s I think. I met Rachael in Wythenshawe Transplant Hospital a year ago. She was in the bed next to me having had a double lung transplant 7 months previously. Needless to say sadly it didn’t work.

I went to see my consultant in Nottingham back in August and he was delighted to tell me that the shadow on my lung had all but disappeared and was going to refer me back to the Transplant team. It’s taken a while but I now have an appointment this coming Tuesday where my fate could be decided. I have tried to prepare myself for this moment this past year by putting on loads of weight and going back to rehab for the third time. Since the exercising came to an end I seem to have come to a grinding halt and I am feeling myself getting short of breath more easily. This won’t do! I have to start exercising again for my own sake. Maybe I will try some yoga if I can get my body to move that way.

Next time I will tell you about two new things that have come my way in the last week or so.

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Dealing with Panic/Anxiety with SOB

I found this today and thought it was excellent. I did not write this…

A lot of COPD’ers suffer from anxiety attacks and quite a few of us are on anti-anxiety meds. This anxiety causes us to react somewhat like people with agoraphobia. We have a fear of being somewhere or with someone and having an SOB (Shortness of Breath) attack and we will be unable to recover without embarressing ourselves. We finally reach a point where we feel it’s a lot easier to stay home, rather than chance an anxiety attack. This is something that we all have to consciously avoid.

I am also including a write-up on breathing that may help you when you do become SOB.

“The following are my thoughts on the importance of addressing the breathing techniques of those of us who have COPD. This aspect of our treatment is, unfortunately and sadly, highly neglected by our medical community. It deals in general terms and not all aspects of it will apply to all COPD’ers, as we are all different. I have tried to keep it simple, yet provide some of my insights, (Right or wrong!) into our breathing distresses.

For “normal people”, breathing is as easy as inhaling and exhaling, without consciously giving their breathing any thought at all. For the vast majority of us with COPD, breathing can sometimes be an adventure, and for some of us, most of the time it is an adventure. It is my belief, that anyone who deals in the care of COPD’ers in their later stages should try a little experiment as suggested by Dr. Rick Hodder, a noted Canadian respirologist, in his book, “Every Breath I Take – A guide to living with COPD”. Quote: “Take in a deep breath but don’t exhale. Take in another and another. You’re hyper inflated. Hold it! Now run upstairs. You’ll soon appreciate what it feels like to have COPD or asthma.”

We as COPD’ers have to deal with our breathing on so many levels:

(1). The psychology of breathing – How stress and anxiety affect our breathing.
(2). Dealing with Shortness of Breath (SOB)
(3). Learning to purse-lip breathe (PLB).
(4). How we breathe. Are we shallow breathers or diaphragm breathers?
(5). Inspiration. (Inhaling)
(6). Learning to exhale properly.
(7). Learning to relax our auxiliary breathing muscles
(8). Learning to pace ourselves so we don’t become (SOB).
(9).The importance of proper nutrition and proper exercise in combating SOB
(10). Pulmonary Rehab

Anxiety – Why do we become short of breath? In a nutshell and very simplified, in most of us COPD’ers, our DLCO or diffusion rate is compromised so that our lungs are no longer able to efficiently exchange O2 and CO2. The O2 in our blood may drop and the CO2 level increases. Our brain signals our lungs and heart to speed up and try to get our level back in balance. We then become short winded. Then anxiety kicks in. When we become anxious, our body releases adrenaline which causes our heart to beat even faster. The brain then tells the lungs that the heart is working harder and needs more oxygen. So we start to breathe faster and harder. The brain then tells the heart that the lungs need more blood to process, and so the heart starts to beat faster again. And so on, and so on, until we are uncontrollably Short Of Breath. We are then hyperventilating, breathing too fast and too shallow.

Pursed-Lip Breathing – What is Pursed Lip Breathing (PLB)? PLB is the first line of defense used by most COPD’ers when trying to recover from shortness of breath. It involves breathing in through the nose and exhaling with the lips pursed as if you were going to whistle. How hard do you blow out? I find that blowing out with the same force that you would use to cool hot soup on a spoon to be the perfect force. Blow hard enough to cool it but not hard enough to blow it off the spoon. Many sites advocate blow like you were blowing out a candle, but I find that if I simulate blowing out a candle, I tend to puff, instead of a slow exhale and I tend to exhale with too much force and find it harder to relax. How does PLB help? When we PLB properly we create a back pressure in the mouth and throat and this back pressure actually blows the airways open. Now that we can breathe in easier we have to concentrate and breathe out for at least 4 seconds or longer if possible. This helps expel CO2 and trapped air and we begin to breathe easier yet. I have been trying something for the last month or so that helps me. It may not help everybody. After I exhale for four seconds or more, I pause and let the body inhale naturally. The reason I pause is two-fold. First of all, it tells me that I am regaining control of my breathing, which allows me to relax easier and secondly, I find that if I consciously try to inhale right away, I will invariably gasp. When I inhale naturally, I make sure I do not try to “top off” the air already in my lungs. “Topping-off” is when we inhale once and then inhale again before we exhale. This will cause you to use your auxiliary breathing muscles in your shoulders and neck. This will in turn cause you to expend more energy and use up more oxygen. Also with the pausing after exhaling, I would suspect that it gives the lungs a little more time to exchange gases, (CO & CO2). Now that we are breathing rather easily, the anxiety subsides and all is well in our wonderful little worlds. Practicing these techniques is very important so as to be completely trained on how to recover from being Short Of Breath.

Diaphragm Breathing – Your diaphragm is a large muscle separating your lungs from your abdomen. Your diaphragm can work hard and never get tired. Some people breathe using their chest muscles instead of their diaphragm. This takes extra effort and can cause fatigue and tension. Test yourself to see whether you breathe correctly through your diaphragm:

1. Sit upright and relax your shoulders
2. Rest one hand on your chest and the other on your stomach
3. Breathe in deeply through your nose and pay attention to the movement of your hands.

If you use your diaphragm to breathe, the hand on your stomach will move. If you use your chest muscles to breathe, the hand on your chest will move. Try both ways of breathing and feel the difference. If you are a chest breather, practice diaphragmatic breathing for a few moments several times a day, and soon it will become automatic. If your neck and shoulder muscles are constantly sore after a bout of SOB, then you are a chest breather and you have to learn to diaphragm breathe.

I can’t begin to tell you the difference that diaphragm breathing has made in my life. I don’t know when it started but I became a shallow breather (chest breather), not using my diaphragm. About eleven months ago I was having a very hard time, being continually SOB. If I went upstairs to the washroom, even using PLB, it would sometimes take me ½ hour to get my breath back. To make a long story short, I learned how to diaphragm breathe and my life turned around 180 degrees! When I go upstairs now I am winded when I reach the top as opposed to severely SOB.

I now know that my last hospital stay for respiratory failure was due mostly from being a shallow breather. I was cleaning out my shed, and because of my low FEV1 (10%) and low DLCO (19%), I would work for 30-40 seconds and then I would have to sit and catch my breath. I would PLB and huff and puff for 3-5 minutes in order to catch my breath. After doing this for a couple of days, 2 or 3 hours a day, I eventually exhausted my breathing muscles to the point that they were not functioning properly and not able to rid my body of CO2. Eventually this caused respiratory acidosis (lowering of blood pH) which led to a very severe exacerbation and respiratory failure. Now that I know how to diaphragm breathe, hopefully, this will never happen again! My next exacerbation will be infection induced! Probably the most aggravating thing to me through all of this, is that I suffered undue breathing hardship for a long, long time because nowhere down the line was my method of breathing ever checked and corrected! I did a lot more panting and sucking for air than I ever had to! Every COPD’er should be individually checked for proper breathing techniques.

Exhaling – A tremendously neglected part of therapy by our medical community! Our problem as COPD’ers is not getting good air (O2) in, it’s getting bad air (CO2) out. Extending our exhale time helps us on two fronts. First of all, it gives our lungs a much better chance of ridding our bodies of CO2. Secondly, I believe extended exhaling is the main reason that I have been exacerbation free for the last 1 ½ years. I realize the immune system helps, but I was getting pneumonia, probably every three months before I learned to breathe and exhale properly. The more stale air you exhale, the more fresh air you can inhale, which gets deeper into the lungs and does not give all the little creepy crawlies a moist, damp environment in which to multiply. Extending our breathing time is not easy because it goes against what our mind is telling us. Our body is telling us to get rid of CO2, but our mind is telling us we need more O2. It’s listening to our mind that causes us to hyperventilate as we gulp for air. The nature of PLB causes us to slow down our exhale as well as opening our airways, but it also restricts the amount of air we can exhale. After 4 or 5 PLB’s we can actually exhale normally. So we should exhale for 4 seconds and then let our lungs refill naturally. That is, do not consciously inhale. I find if I consciously inhale I invariably want to top off my lungs, which increases my O2 input and that is counter-productive. When I was learning to PLB, they all said to breathe in through your nose, although nobody had a definitive answer as to why. Everybody said for added moisture or infection control. I finally found an acceptable answer for myself a few months back. I noticed that when we inhale through our nose, it is very hard to top off the air in our lungs. If we breathe in through our mouth, the tendency is to “top off” our lungs and that is not what we want when we are SOB. So if you mouth breathe, be conscious of “topping off” or breathing in too much air.

Eating – Like a number of COPD’ers, I have always had a problem when it came to eating. I could never eat too much for two reasons. One, I would become winded and the other, I would always have that feeling of having a tennis ball stuck in my solar plexus if I ate too much. I would then have an uncomfortable sensation in my chest for hours. It would take 4-6 hours for the unpleasantness in my chest to disappear. I could not eat a meal without stopping and trying to regain my breath or stop eating altogether for that meal.

A couple of months ago I sat down to a supper loaded with turkey, mashed potatoes, carrots, peas, squash, bread dressing and condiments. I ate the whole thing with no SOB and did not have any bloated feeling!

So, what Happened? What Changed? How I breathe while I eat is what has changed. Up till then, I would breathe in as I put some food in my mouth. I would then hold my breath as I chewed the food. Then I would breathe in again; swallow the food and then exhale. In essence, I was inhaling twice for every exhale and “trapping air”. I started to exhale more while I was eating. Now, as I am chewing my food, I very gently exhale for as long as I comfortably can. That’s it! That’s the only change! I can now eat without stopping because I am too SOB or too tired to continue. As a bonus for me I gained 1½ pounds, which is significant for a man who is 5’8” tall and weighs 99 pounds.

It takes a lot of O2 to digest your food, so please do not lie down right after supper as our breathing rate slows down when we sleep and it’s harder to get O2 in and CO2 out when we sleep. I hate to break the ladies’ hearts, but you should leave the dishes for a few hours, until your meal is digested.

Relaxing – If you exhibit any muscle soreness after a bout of SOB, it is probably because you are either over-breathing or not breathing correctly. With a combination of PLB, diaphragm breathing and exhaling for 4 seconds, you should be able to talk yourself into relaxing all those muscles used to breathe. Something I have used sometimes for the last year or so is to start humming a tune. Myself, I hum to “Amazing Grace”. Humming it right it forces me to extend my exhale, take small inhales and gets my mind off of my SOB and allows me to relax. Relaxation is very important. Pick your own song!

Exertion causes us to be SOB and as COPD’ers we have to learn how to pace ourselves to try and cut down on the episodes of SOB. We also have to exercise regularly to keep our muscles as well toned as possible as well-toned muscles use a lot less O2. Pulmonary rehab is highly recommended for all who have not been there.

As a final note, most of us know how important it is for us to address our breathing problems properly. Unfortunately, the medical community has not seen that need, as yet. We have medicinal therapy, physical therapy, nutritional therapy, but no breathing therapy as such. Somehow we have to reach out to the medical community to see how this can be changed. I presently go to different COPD forums on a regular basis, and it is through these forums that I have developed most of my breathing techniques. Anyone who has COPD should join these forums and learn how to cope with the various aspects of COPD. Many will be surprised how manageable it is.

Hope this helps,

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Out and About …Part Three

Part Three…

Leaving Larkhill behind I had to negotiate the bicycle blockade that is there to stop folk riding hell for leather out into the road and into the path of a pedestrian or car. It made me recall that as a child I would leap onto the top rail my dress tucked into my knickers and twirl over and over, never tiring of the fun of it and having no notion of being out of breath.

I appear onto a road that takes me onto the next passageway. It is shaped like a boomerang and half way there is a street light. This is where Jon and I would say goodnight to each other before he retraced his steps to where I had come from this day and I went on to my home.

It opens out onto a major bye-pass with service roads on either side intended for the residence who live in the bungalows lining it. Here I encounter my first real concern for my safety. Quite apart from fast cars approaching from both sides in order to separate the service road from the major road there is a wide curb which is raised and I am not sure I can get over this. Do I go all along this road to where there is a pedestrian crossing and which is right out of my way, or do I risk life and limb and hope, that by striking the curb at the right speed and angle I can both mount and dismount, scoot across the road when there is a lull in the stream of traffic and where fortunately there is a gap in the service road for cars to enter? I find a broken piece of curb wait my time and go for it. It worked great and I was over the road and onto the pavement proper before the next wave of cars went zooming by.

From here it’s up hill through a small passageway. To the left of me, when I was a child there was a huge field where we had picnics, built tunnels and dens and any number of games. It’s a housing estate and primary school now. Onward and it’s just one more road still up hill until I reach my goal. There are only bungalows now that I pass and I recall the many playmates that lived in them and wonder where they are now?

Turning the corner I see it but how different it looks. Where there were high privet hedges that afforded us privacy in the garden there are now low brick Walls and fencing. My childhood home is a detached bungalow that was bought brand new by my father when I was on the way. It was added to later on when my siblings were born.

It sits on a corner plot of similar types and is slightly elevated from the road. My mother used to sit in the dining room with her newspaper crossword and watch everyone to and fro from her vantage point. She would sit there for hours listening to the radio, smoking. Always smoking. She had White hair. People would ask her what she used to get it so White. The truth was it turned that colour when she was 16 after having Rheumatic Fever twice. When she smoked she would hold the hand with the cigarette up to the top of her head and over time the smoke made the front part of her hair yellow, just like it does folks nails. I took a couple of photographs and came away. It wasn’t my home anymore.

More soon..

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Out and About part two

Around the apple tree I go, feeling the fallen rotting fruit explode under my wheels, I titter to myself as it feels good to be making an impact however destructive it is.

Watch out world, Jools is at large!

I emerge from the orchard, zoom past the garden shed and out through the gap between the house and the neighbours hedge into a small cul-de-sac. It is the middle of the afternoon and the sun is beautiful on my skin. I have chosen to wear a wide brimmed straw hat I picked up 18 years ago in Sydney, Australia as then and now I cannot tolerate the piercing rays through my skull. Besides it is hiding a very bad hair day. So there I go cutting a bit of an eccentric dash as I make my way along the drive of semi detached houses that exist in this sleepy suburb.

I had googled public toilets in Timperley the evening before and had settled on the public Library being my best bet should I get caught short. My main motivation for going now was to see if indeed I could use it.

The Library was situated in the West part of the village centre. To reach that I had to first travel about a half mile along a busy road, which takes me first past the local newsagent, which I was delighted to see had no step up, so I would be able to drive in should I choose to do so, and also over a hump back bridge which has trains thundering through at all hours. I must have made this journey in my life thousands of times since I was a baby in a pram. It was the route my Mother took every working day in the late 1950’s to my Surrogate Mothers house before she dashed off to catch her train to Manchester, where she worked as a Civil Servant in offices on Deansgate. I was lucky I had two Mothers who I loved with equal affection and to this day my surrogate sisters are a big part of my life.

On reaching the centre I turned left past the Stonemasons Arms and a bank of shops and arrived at the library. I had read that the public toilets were upstairs but that there was a lift for wheelchairs. They were right about that, however on looking at it more closely that is all you would get in. No standing room was available and as my mobility scooter is longer than a wheelchair I seriously doubted whether it would fit. I could see me getting wedged in if I tried and as there was no one about to hear my cries if I did I came away again.

I retraced my steps and made for the cross road where the pub is. It is a complicated procedure but by pressing the traffic light crossing buttons in turn I managed to get over two roads and came out diagonally from where I started. As most of the shops had steps I decided to ignore them and took the road that leads to Lark Hill. There I encountered the owl wood carving and had to get my iPad out to take a shot.

Lark Hill is very special to Jon and I. It is where we started our courting. It’s just an open piece of ground with trees and grass and a dirt path that eventually leads to a back road where more houses are. It’s wonderfully dark at night and lots of couples went there. I had chosen this way because this is ultimately the way “home”. It’s where I spent the first 20 years of my life and I wanted to see what it looked like now. More soon…

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Out and About

It’s been a while since I put fingers to keyboard and wrote about my life. Let’s see…

We all went away for a little holiday to stay with Jons sister for a week in the middle of August. I gave up driving long distances a year ago when I felt so weak. I thought I was a liability and felt it unsafe with my children in the car. Since driving to and from my Pulmonary Rehabilitation course venue I have had a change of heart and gained enough strength to attempt it again. The result was I was completely fine. I had no SOB episodes whatsoever apart from a little hiccup at the beginning. We set off from the house and two streets later I was not feeling well and worsening all the while. I realised that I wasn’t getting any oxygen through the canulla. It had been switched on everywhere but at the main tap (there are three in all). All I could do, was say weakly “please help me.” all the time trying to remain calm while Jon fumbled with switches. It was Oliver who saved the day by taking it off his dad and turning it on. It was like flicking a switch. All of a sudden I could breath again.

We arrived without further ado and Jon and the lads went off to York for three days the next morning. They deserve a rest from me and Mary looked after me admirably.

The next day I went out on my scooter. I had asked them the night before if everything be made ready for me to ride and go. They had done a thorough job. It’s a long walk for me from my bed at the front of the house right to the kitchen back door. In order for me to achieve this they had left chairs placed along my route to stagger my journey there and on my return back again.

I had to be absolutely sure I had everything I needed in my new iPad bag in case of any emergency so I have a check list of items I look at before I set off as there is no going back once I start (if I had to I would surely give up and not go)

Here is my Check List

iPad Bag

iPad
Cloth
Purse
Inhaler
Co-codamol
Zoton
Mints
Phone
Chocolate
Sudoku
Pencil
Water bottle
Brush hair
Shoes on
Jacket

Okay so onward and upward and clutching my bag and making sure I don’t catch my hose under the door (so maddening when that happens) I take a deep breath and rise on the breath out. I take my first few steps and down the hall I go to the morning room at the end and plonk myself down to rest. The first lot of exertions are always the worse as the adrenaline is pumping and I get short of breath even more to the point I ask myself why am I doing this to myself. After a while it quietens down and I move again this time to the kitchen in front of the sink. Now it gets a little tricky as I have to open the back door take the key out and try and keep the door open until I am ready to move outside.

I do have to say at this point that to a healthy person this whole procedure takes about 1 minute to achieve. For me 1 hour. I am not joking, I have only 10% lung capacity left and every breath when I have moved feels like my last. At times when it is overwhelming I wish it was my last, as it is simply too hard to bear, but bear it I do because I have to and I am not sitting in my bed if I don’t want to and have the opportunity to do so. I try to relax get my belly breathing going and just wait until I feel able to attempt the next leg of the journey

On the next move I manage to get to my scooter but I am right at the end of my hose which is straining and in danger of flying off my face.

Fortunately they have left the portable canulla hanging on the handlebar so all I have to do is switch on the conserver box and I am good to go. I stow my bag in the little basket on the front and find my little key to turn it on. I had to reverse so I could get in line to close and lock the back door and promptly rode into one of the legs holding up the gazebo I am under.

If this is an example of what my afternoon will be like I am in for a rocky ride…more to come…

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Disability assessments and dignity – must they always be mutually exclusive?

Disability assessments and dignity – must they always be mutually exclusive?.