SLEEP AND INTIMACY
This section has been left as written by John Kirtley. It is a personal opinion, but none the less valuable for that. We may update it later if necessary or if other heplful information becomes available. David and Terry.
SLEEP FIRST
"Sleep is often neglected in the treatment of COPD. Indeed some books offer only a few lines about it. Problems with sleep are common among patients with COPD, with many patients reporting difficulty in getting off to sleep, frequent awakening during the night, difficulty getting back to sleep once awoken and non-refreshing sleeping. It should be borne in mind that factors that may contribute to poor sleep quality are numerous; they include sleep disruption caused by cough, dyspnoea (breathlessness) or chest pain, stomach upsets, little day time exercise, effects of medication, chronic pain, anxiety, depression, sudden drops in oxygen levels or excessive mucous problems.
My own experience highlights some of these problems. I have had problems with sleeping for at least five years. In retrospect I made the mistake of taking sleeping pills (hypnotics). Although they work for the most part, I realise that I will probably be on them for the rest of my life. Even with the pills, I wake on the dot every 2 hours - I don't know why. It is nothing to do with wanting to urinate and I do not wake up out of breath. It appears that I awake in the middle of a dream (REM stage sleep) so maybe it's the dream that makes me catch my breath.
I have recently found out that my oxygen levels fall periodically through the night especially in "dreaming" sleep. Therefore I am taking oxygen at 1 litre per minute and have found that I no longer wake so often.
I went for a sleep test recently at the Royal Brompton Hospital & Harefield hospital where they have a chest clinic. It took 4 nights but they discovered that I suffered from respiratory acidodis ( too much carbon dioxide in the blood) and I was sent home with a NIV machine - see the page for details. This clears my blood of carbon dioxide and makes me feel less tired during the day. However I must remind readers that only 15% of my lungs are working (FEV1 15%).
So I am going to suggest some ideas for sleeping more comfortably, regardless of my comments above!!
1. Try to ask for sleeping pills as a last resort and remember that they are highly addictive. But do not rely on more and more antidepressants to do the job - this is dangerous.
2. Make your bedroom a room for sleeping. Remove a television and radio and do not get into bed until you are ready to sleep.
3. Avoid day time napping. I realise we get tired easily by mid-afternoon but if you do drop off put your alarm on and sleep no more than 30 minutes. If you sleep for 2 hours then do not be surprised that you can't fall asleep at night time.
4. The more exercise you do in the day-time the more it will tire you out physically and the easier it will be for you to sleep.
5. Some people recommend a melatonin tablet and / or some valerian root (1000mgms). Ask your GP first though to see if they will react badly with other medications that you might be taking.
6. Have a hot bath or shower in the evening just before you go to sleep - that will help you relax. Although that might be regarded as environmentally unfriendly these days.
7. Do not eat 3 or 4 hours before going to bed and equally do not drink tea or coffee or chocolate - they will stimulate your brain again. Also large amounts of liquid will keep your bladder busy at night!
8. Take a hot glass of milk to bed with you, unless you are allergic to milk products or something or it encourages mucous to develop.
9. Go to bed at the same time each night and get up at the same time. I can't manage this if I've been unable to get off to sleep, so I get up later, but I can do this because I'm retired.
10.If you wake up quite often with severe breathlessness you should see your GP at once because it might indicate that you should be on oxygen while sleeping. Equally deep snoring might annoy your partner and cause you to awaken - again see your GP about this. The GP may lend you an oximeter and you should or your partner taske a reading every 2 hours. I use oxygen at night at 1 litre per minute.
11.I know some people believe in having an alcoholic drink or two or three before bed-time. You might sleep soundly at first and then wake up early, and if you drink too much you will have a hang-over which will worsen your breathlessness. Drink occasionally and in moderation if you must but don't depend on it! Sleep-related issues can be very important in the management of patients with COPD.
12.If you are depressed and anxious and this keeps you awake then see my page on the subject.
13.Frequent awakening for urination in men and failing to, can be a sign that there is something else wrong and again you should see your GP. On the other hand you might be getting neurotic over the matter!! Or be drinking too much in the evening.Also it is often difficult to urinate if you are out of breath.
14.If you have chronic pain then your GP will treat you for that and I cannot advise you on it.
15.Taking diuretics last thing at night is not a good idea!
16.Sometimes people with COPD find it easier to sleep by piling up the pillows - try it and see.
17.Try to keep the bedroom temperature at 18C - use an electric blanket if necessary in the winter. And have light bedding - duvets are preferable. And they can be easier to make up in the morning! Or not as the case may be!!
18. If coughing keeps you awake please speak to your GP and he or she wil recommend some medication.
10. If you have a partner it might be an idea to have twin beds or in our case separate rooms. So you can get up if you can't sleep after 30 minutes and do something else and then try again. The worse thing is to fret about not sleeping while just lying there.
Write some tasks down that you would like to do in the morning. Then when you get up you can focus on those and start the day on a positive note. And don't forget to take your reliever if you wake during the night".
SECOND : INTIMACY AND COPD
Now s.. is a sensitive subject and I have had to drop the word from my web site. I am being inundated by dubious mail concerning the subject!! It will rarely be brought up by GPs or Consultants or even Respiratory Nurses or anyone else come to that. And yet intimacy is important to us all in one way or another while we are alive and COPD does present a few problems which do need addressing. Now if you believe intimacy is somehow a private affair, shameful or just a male thing or you have faiths which might not encourage frank discussion then please stop reading this now. I have no intention of hurting anyone's feelings but I do intend to address some issues of an intimate nature in a frank and open way.
Now I am no expert or psycho-sexual psychologist so don't expect any dramatic solutions for your relationship problems!!
Many sufferers of COPD are elderly. It is often assumed that they will have stopped having "intimacy!"ages ago. However, I have known quite a few elderly people in their 80s who have been active. And the match making web sites/newspaper adverts are often crowded with single pensioners seeking relationships. For younger people with COPD it is even more of a pressing problem especially if they have even younger partners who may be more demanding.
So what then are the problems associated with intimacy and copd?
From a copd sufferer’s perspective.
(A) I have a heart condition as well. Should I have intimate relations? Well you should always without exception ask your GP or consultant first. You’d be surprised how many people die of a heart attack while having ... – I presume they died happily but I have no idea. Always consult a GP or consultant and decide for yourself
(B) A loss of self-esteem. Struggling to breathe while moving around does not make you feel good about your person. You may in fact begin to hate your body. And this lack of self-esteem may be compounded by the feeling that it is all your fault – that you smoked your way to this state and are in some way unworthy. This might lead you to believe that nobody not even your partner will find you attractive physically and even if they attempt to make love to you, you may not believe it – that they are merely acting out of sympathy. So you lose interest in intimacy.
Solutions? Well for a start it is only your lungs that are packing up and that does not show on the outside. For example have you tried smiling at people? Notice the difference when you do. You feel good and you make people feel good. Has your mind packed up? No in most cases and companionship and verbal attentiveness easily outweigh a disability such as yours. Instead of looking at yourself in a negative way – say yep I’m still alive and I’m going to do my best here, wear some decent clothes & of great importance voice your concerns to your partner. Or if you haven't a partner try this approach if you want to chat somebody up - yes you heard it right - you can!
BUT always be honest. This is VITAL.
(C)I can’t make love because it makes me too breathless and that would put both of us off. Understandable you might think but we all know that exercise is good for us and sex is exercise. Having "intimacy" has been described as running upstairs. Well if I try that I virtually collapse. So lets be honest the days of such gymnastics are over. Slow and steady. Firstly find the most comfortable position. If your partner lies over you this is not going to do any good whatsoever. Some people find that lying side on together produces better results. However, you may need to use oxygen to find the puff. Be sensitive to each other’s needs. Talk about it. A kiss and a cuddle and a little use of the hands might be all that is necessary.
(D)OK so if I use oxygen won’t we get wound up with the tubing. Well probably yes!!! Have a laugh about it. Such intimacy is not a deadly serious matter unless you make it one.
(E)Well OK but I’m in my 50s and I’m single. Who will want me? You’d be surprised by joining an internet dating site how many people out there are in the same boat. Maybe you’ll meet someone at a Breathe Easy meeting or other venue.
(F)Yes but I’m in my 70s and single and still have the urge. Well many people self-manage their frustrations by plucking up courage to reach the top shelf at the newsagent! Although you don’t have to reach that far these days. There is nothing to be ashamed of in masturbation, unless your religion instils fear or guilt. And you will still feel better (release of endorphins) and have some exercise!!
(G) Sure but I'm impotent or my partner is impotent. What can we do? Oh no not that one I'm thinking! Firstly impotence in both men and the equivalent (homonal imbalance etc) in women is a very common thing and may or may not have anything to do with COPD. If your heart is strong your GP may recommend a drug beginning with V..... (this mail is dominant!!) & I believe there will be a similar drug for women coming on to the market soon.(more about that later).
You could opt for marriage counselling or solve the problem with discussion and tender loving care. But do not think it is always the result of COPD!
Disinterest in intimacy may also be the result of taking anti-depressants. You should consider this carefully and talk to your GP or nurse about it.
Be honest and straightforward with your partner, discuss your concerns and have a laugh occasionally".