FORSYTHIA
CAMELIA
Monday 10 April 2006
Well I apologise for not writing much lately. For two weeks I had a bout of depression, as indeed did a number of healthy people in the UK, to a large extent because of the persistence of the cold weather and the late arrival of spring. Speaking personally I was confined to the house and this in itself is depressing. However there were signs of spring today in spite of the northerly wind and in sheltered spots the temperatures at last rose into double figures, and so did my mood. I left the house with relief and spent a few hours by the sea in glorious sunshine – it was so clear that it might have been the Mediterranean.
The garden was last year filled with colour. Now half the daffodils are still not in bloom although some trees are doing well. I include the pictures above from our garden to cheer you all up. On Wednesday we will take a hike (with oxygen!) to the garden centre to stock up for the summer – they deliver!. Air Products now tell me that their initial supply problems have largely been sorted out and that they will be supplying conservers to all customers who are using ambulatory oxygen. This is important because they extend the life of a cylinder by 5 times so it could last up to 17 hours!
I am becoming very concerned about forthcoming changes to the Primary Care Trusts. Apparently the number of PCTs will be shortly drastically reduced. It was only 2001 when the current trusts were created and now the government intends to return to the old system. One newspaper article I read regarded this as similar to shifting the deck chairs around on decks of the Titanic. Staff morale is plummeting and much of the planned savings will be swallowed up in redundancy pay and the shift in physical resources. I am especially annoyed since most of the last year has been devoted to making contacts with staff in my local PCT, and soon I may have to start all over gain. I will also have to re-write the FINDING OUT page! However, there are a few months to go before anything happens.
I have been exercising on my indoor cycle (with oxygen) for thirty minutes each day, usually watching the news, but I do find it (not the news) utterly boring. I know I must do it but soon I hope I will be trundling along the coast with my oxygen – a far healthier way of trying to maintain a reasonable level of fitness. I know some patients love gymnasiums but I hate them and always have. I do hope that by the end of May my efforts may be rewarded by exercising more without oxygen.
Most COPD patients are capable of moderate activities , with perseverance. This might include walking the dog on a level surface, singing while moving, gardening, cleaning windows, washing the car and so forth. You might have to use oxygen however. It would be good if you aimed to do this sort of thing for 60 minutes five times a week. I would also include an indoor cycle. This will burn up to 7 calories a minute.
Indoor cycling - yawn, yawn - but necessary.
Vigorous activity such as digging, moving furniture, sawing up wood and so forth might beyond most of us with severe emphysema. But if you can, aim to do 20 minutes of this three days a week. This will burn more than 7 calories per minute.
For more information on EXERCISE see my main web site www.emphysema-copd.co.uk
JUNE 6 2006
I had hoped to write something every week but to be honest I am spending three hours a day on my web site - in terms of answering letters, researching new information and more especially promoting it. The latter has been an arduous process since I have to use networking i.e. seeking out NHS contacts, to contact other NHS contacts to promote the site from the top down. And then the other approach which is engage patients from the bottom up so to speak. You would be amazed how much time this takes. The NHS is not known for its lightening responses nor any other public body. And since I am only a patient I have to establish my crudentials to each contact professional I talk to. Still I would encourage any patient out there to become involved in some way with the NHS, provided that they have the confidence to present an argument and are reasonably knowledge about their area of concern.
So promising to write something every week was rather ambitious since I only started the main web site in January. However as the web site beds down it will allow me do this. Suffice to say that the involvement with the Primary Care Practices and the Web Site has given me my life back - at least as long as my lungs last. There is a great deal of satisfaction to be had from helping others and in my case to a certain extent restoring my professional life. Breathless or not I can always use a computer and a telephone, and I have portable oxygen to attend meetings and conferences during the warm months. When I become unable to do the latter, then the computer will become my lifeline as well as oxygen!!
Next week is Breathe Easy Week and I hope that most patients will in someway contribute, if you are able to. Contact your Breathe Easy Group. As for me I am attending a Conference at the Eden Project on Wednesday 14 June - this is in Cornwall. Apparently they are organising all sorts of activities and so forth for people with lung conditions on a regular basis so I hope to pick up a few tips to apply to my own part of the country.
I live by the coast and although it is hot it is not unbearable but for those of you who live inland please keep indoors when the temperatures rise to 24 C or so, as they are expected. Wear as little as possible, sit by an electric fan and most importantly drink as much fluid, preferable water, as you can. Heat exhaustion and dehydration is a killer - remember Paris in 2003 (I think). Do NOT go out in the hours between 11 and 4 pm. Shop in the early morning.
July 23
Yes well I appear to have failed again to write this diary. I spend three or four hours a day writing to the managers of Primary Care Trusts, researching changes in the NHS etc etc And in spite of all my good advice I became very depressed when the heatwave struck, finding the teperatures indoors almost as high as outdoors and I began to feel out of breath even at rest which caused anxiety which worsened my breathing. Anybody with COPD will be very familiar with this. The nights were hot and often sticky and the demented seagullls began to party around our road shrieking, wailing and generally doing what seagulls do. Some people complain about people noise in the streets at closing time or loud music. I have experienced both but seagulls beat the lot - partying every night. I can't shoot them, they can't be arrested or warned or have their vocal chords taken away. They especially like the dawn around 5AM and of course that is when people often awake and then sleep on. No chance in our street. I bought some earplugs - those you roll up tightly and insert into your ear canal and then stick your finger on them until they expand. Either my ear canal is blocked or abnormally small but the operation takes me about 15 minutes by which time I'm out of breath and have to calm down again. But would you believe it? I can still hear the dratted birds although somewhat muted. They attacked a poor woman in a nearby town - six of them- and shopkeepers had to rush out with towels to beat them off. Our neighbours have bought a water gun to shoot at them and I intend to follow suit with the most powerful one I can find. Water from the butts of course! Trouble is that in this dry weather they will probably love it! Talking of birds, they consume vast quantities of bird seed still - the ground is probably too dry for them to pull out the worms.
I digress, so at first I had problems with the heat and humidity and my breathing. It took me a number of days to sort it out. Firstly long periods of relaxation, "pursed-lip" breathing, buying another fan, moving into the coolest room, opening the attic door (cool air from the roof), using oxygen from time to time and then patiently waiting for my body to adjust. Now I'm fine. Except that the heat has kept me indoors quite a lot and prevented me from exercising as much as I would like. This house is so protected against the cold but not against the heat! Today the temperatures have dropped and the air is fresh and although it is still 22C or so it almost feels cold! Having said that I dread next week when temperatures are set to soar to 30C and by the coast! Of course these are shade temperatures which means in the sun they will exceed 100F!
Anyway I have three days to get out and about and resume physical activity. We bought in Sky HD because I spend so much time indoors and I must say the pictures are brilliant, and I now have news from all over the world, which is thoroughly depressing. I try to keep out of politics (except on health) and leave that to my son who attended the peace rally in Hyde Park yesterday. I feel that the problems in the Middle East are intractable and are likely to worsen. So I recently had my energy prices capped until 2010 so if I'm not around at least Joan will benefit. I'd buy some solar panels but the government in its wisdom or lack of it has offered only a limited grant and prefers the nuclear option. But that is politics and I said.......
Good news about my web site. It will appear in the national British Lung Foundation's magazine. So even if you are seriously ill you can still make a difference.
July 26 2006
Well I had hoped to travel along the coast this week but it has been far too hot and humid for that. The nights continue to be sticky and rather unpleasant to cope with. So I have resorted to walking from one seat to another in the garden. What amazes me is how our "little birds" are consuming the bird seed feeding tubes - we literally have to refill them every two days! I guess the ground is so hard they can't get at the worms.
My O2 sats are reasonably ok at rest - 93-96% depending on how relaxed I am or how long it is since I took Bricanyl. But they drop like a stone if I bend down or move to quickly from one place to another. It still is a shock to find that I have to move like an elderly man to get anywhere without oxygen. I know some of you will say exercise, exercise ! But I say not in this heat. We rarely have air conditioning in the UK but if we did the electricity supply would be threatened as is happening in California. I could of course go to a health club if there was one that is!! Do you take your blood pressure at home? I have a sophisticated one but my GP thinks that electronic monitors are not as accurate as his mercury column one. I beg to disagree. In some of the European countries these mercury monitors have been banned - mercury! Anyway I have been relieved to find out that my readings are generally 126 over 75. However, after an exhausting 10 minute slot with my GP and becoming out of breath the blood pressure soars! Anybody with 160 over 90 or so taken after sitting quietly for 30 minutes. and propping their arm up on cushions or the table until the upper arm is in line with the heart, should take suitable medicines.