by Alex Cowan and Victoria Mackenzie
Fatigue is not the same as tiredness — it’s much worse. It feels like having a full-time job, five children who are off school playing up, no sleep, and no help. It’s that overwhelming. Some people spend a lot of time in bed and resting, hardly being able to move. Others get fatigue just now and then. They have to stop whatever they are doing once fatigue hits, because pushing on may well end up with several days in bed recovering.
And fatigue may be confusing, because it may lead not to sleep, but instead to panic and anxiety. You may feel awful and useless; it’s so hard to explain to others, and you question whether your feelings are acceptable — or just pathetic.
Different kinds of fatigue affect people with a range of different disabilities, and in many ways. In particular, it might make it difficult to enjoy sex. You might mistakenly feel unattractive and you may not have the energy to even begin sex, or you might start but peter out before you want to.
It’s okay to feel sad or angry about losing out in this way — in fact, acknowledging your feelings may help you find it easier to move forward and find different ways of making love. But resist the temptation to feel needy, be assertive and stand up for your own right to rest — it’s absolutely appropriate to conserve your energy, not to waste it, but to reserve it for sexuality. We deserve to have the sex we want!
As people who experience fatigue, we feel that this topic is not widely discussed or understood, which makes it even more difficult
to cope with. Other people cannot ‘see’ fatigue, so don’t realise how bad it can be.
We have written this in the hope that it can help you have a good sex life regardless. We hope it helps anyone, male or female, gay or heterosexual, who experiences fatigue (or chronic pain) — and their lovers (and friends) — to minimise the effects, deal with the problem in the best possible way, and so have a fulfilling sex life.
NB: Coping with fatigue means finding out what is right for you in your situation. All the points we make below are guidelines only — take them and adapt them for yourself.
To begin with…
• Know yourself. By finding out what turns you on, which parts of your body are most sensitive, and what kinds of touch, pressure and sensation arouse you, you can conserve your energy during sex. So explore, experiment, learn. Get to know your erotic triggers — such as fantasies, nipples, anus, prostate, lips, earlobes, as well as the obvious genitals. Consult a sex manual — but don’t take any list of erogenous zones too seriously; you may have zones (and preferences) that the books have never heard of!
• If, when you first develop fatigue, sex sometimes seems just so exhausting that you feel you’ll never bother again, don’t panic. People can re-learn pleasure — it’s a journey of discovery, and often your body can become more receptive to sexual stimulation over time. With practice, you’ll need less of everything to enjoy the same pleasure and that means you’ll need to expend less effort.
• Here’s a wonderful metaphor to explain how you feel: look at www.butyoudontlooksick.com/xmedia-press/introducing-the-official-the-spoontheory-i-am-a-spoonie-video-by-christine-miserandino/ Christine’s advice is to always remember to keep an extra ‘spoon in your pocket’, especially reserved for sex!
• Remember that solo sex is not shameful or inferior to partner sex — in fact when it comes to fatigue, it can be much less demanding because you don’t have the extra work of pleasing another person. So, if you don’t have a partner (or when your partner’s not around), relish the freedom to do exactly as you please, when you want and
to your own schedule. Form a good relationship with your erotic dreams and your body, and give yourself as much delicious pleasure as you can.
• If you would like to have a partner and don’t have one right now, be positive in your search. Don’t assume that nobody will want you because you have fatigue. Many people have proved that not to be the case. You just have to find the right person. Welcome potential sexual partners into your life. Enjoy cybersex. Make friends — who may become lovers. Join Outsiders and benefit not only from the contacts you make there, but also from the positive attitude to sex that Outsiders champions.
• Being erotic — with yourself or with a partner — doesn’t have to be spontaneous. It’s fine to plan ahead for a time you won’t feel too tired. In fact, planning can become an erotic prelude of what’s to come. This is a good example of eroticising everything around sex so that what starts off as a problem can actually become a pleasure.
• Sex doesn’t need to take place at night! Choose the time of day you are least exhausted. This is probably in the morning, but if you actually feel a surge of energy in the evening, go with it. If, for other practical reasons, you can only make love at a particular time, plan around that. Try to time your erotic activity so that you are working with, not against, any medication. Whatever you plan, get rest beforehand.
• Take things in stages. You could undress first and, if that takes vital energy, have a little nap to re-energise yourself and then have sex.
• Experiment with temperature. Keeping warm may help you getting less fatigued. But if you have MS, it can make things worse, so use air conditioning or keep an electric fan playing on you. Using ice packs or jackets with ice packs on painful spots may help.
• Hoists and swings can allow you to move easily and without strain — but also to allow extra variations in your repertoire.
• If you have a new sexual partner, it’s good to tell them in advance
about your fatigue. You might find it easier to compose a letter, email or ‘speech’ ahead of time, outlining the issues. OK, this might frighten off unsuitable potential partners — but the suitable ones will be happy to have been told and to know the score. That said, don’t overstress your limitations; rather, be enthusiastic about what’s possible, and confirm that you want and enjoy sex.
• Discuss fully with your partner what they can do to help. The more they understand that your fatigue is not the same as their end-ofday tiredness, the more they’ll be able to help you during sex — and the less they’ll feel rejected or hurt if you’re too exhausted to make love. Don’t give yourself a hard time if you are too tired. Rest, or being alone, is sometimes essential. Just say so. Honesty is the best policy.
• However much your partner wants to help and support you, it can become difficult to switch from caring to canoodling. One of us, a lady with mobility impairments who faces this problem, came up with the idea of inviting a very special friend to come around as her ‘bedroom companion’ whose job it is to make her ready for sex, undressing her, helping her look seductive, feel relaxed, unstressed and in the mood. This person may perhaps even stay around during the activity, to help her move, pass her sex toys, etc.
Your brain is an erogenous zone
• Concentrating on the mental aspects of sex can help you conserve your physical energy. So fantasise. Listen to erotic audiobooks. Watch porn videos. Read erotic passages from your favourite books. If you have a partner, share these together.
• Build pleasure without a lot of frantic activity, by focusing on sensual arousal.
• Stimulate all the senses, not just touch. Listen to your favourite music. Light scented candles. Nibble on delicious morsels of food. Dress in silk.
• Do a ‘pleasure audit’, where you mentally scan your body to find where you’re feeling aroused. Then concentrate on that sensation, no longer ‘thinking’ or ‘talking to yourself’ but just feeling. Relax as much as you can — anxiety can dull arousal as well as making you
tire more quickly.
• Imagine taking your arousal and circulating around your body. Once you feel good, warm sexual energy in your groin, imagine that energy going up your back, through your brain, down your front and round again. It feels like a ball of erotic fire. To kick it off again, flick your hips back once it reaches your genitals. This is called ‘Cultivating Sexual Energy’ and was pioneered by Mantak Chia.
• Partner sex can sometimes be mentally exhausting because it involves giving as well as receiving — and if you can’t give because you’re so tired, you may feel guilty — which in turn is likely to drain your energy more. If so, give all you can in the ways you can: talk dirty; tell your partner fantasies; recall erotic moments you have shared; write, text, email, leave sexy phone messages. Then, in return, allow yourself to receive from your partner the sexual pleasures that demand more physical effort.
• Whether you’re alone or with a partner, use whatever you can without exhausting yourself: hands, lips, tongue, velvet gloves, peacock feathers, the cold of an ice cube or the warmth of a hair dryer (though never in body orifices).
• Sexual activity doesn’t have to be athletic, acrobatic or exhausting — it can be slow, gentle, relaxing. In fact, slow can be more arousing. Soft and teasing can be more exciting — fatigue may help you discover a new style of lovemaking.
• Sex doesn’t have to last long. Quickies have an excitement of their own: add lots of lubrication, and use the movements that work best to bring you off speedily. (If you’re female, this usually means involving the clitoris; if you’re male, it usually means a firm grasp around the penis. If you have a partner, oral sex can often be the quickest and easiest route to climax).
• If you’re with a new partner, take things gently when you first get together. The excitement may tire your body, so take lots of rest. And don’t rush into doing every sexual activity at once; only move to more and more intimate things when you’re ready. A partner can help here by reassuring you that they’re prepared to wait; moving
step by step to full sex over days and weeks is, anyway, much more fun than ‘wham, bam, thank you ma’am!’
• Sex isn’t just about intercourse (vaginal or anal). And that’s good news if you have fatigue, because intercourse can be the most tiring of acts. So, rather than just thrashing away joined at the hip, use all your skills — emotional and mental as well as physical — to arouse.
• If you’re alone, watching yourself masturbate in a mirror can increase your stimulation. If you’re with a partner, watch each other masturbate. If you’re feeling tired, let your partner pleasure him or herself while you hold them, fondle them or simply whisper loving thoughts in their ear. Or just watch!
• Take it in turns. One time you do what you can to please your partner. Next time you simply lie back and they do whatever pleases you. That way you conserve energy and get to concentrate on yourself. Try an exercise invented by sex gurus Masters and Johnson where intercourse isn’t allowed but you take it in turns to touch each other, ‘tuning into’ the place of contact as if tuning in to a radio station, focussing on that feeling. This helps people to really get into giving and receiving, if they previously found one of them difficult.
• Find intercourse positions that are less tiring for you. You on your back or side may be easier for you. Buy a good sex manual if you want ideas; but, better still, use your imagination, any physical position at all that’s non-tiring for you can be adapted so that genitals fit together! Cushions can help support you.
• Sex toys can be fun, and help you get aroused more quickly, so mean you expend less energy — plus, if you’re with a partner, this can help you pleasure him or her without strain. Vibrators come in all shapes and sizes and create high-level stimulation; a dildo allows you to penetrate, and some can be strapped on over your pubis or on your leg. Other toys can be penetrated. If you cannot hold a toy easily, then adapt a Universal Cuff.
• Sex doesn’t have to end in orgasm — instead go for ‘goal-free sex’ where you simply feel pleasure without expectation. And that can lead to an amazing ‘floating’ feeling, where you feel you are gliding
through sensations rather than rocketing towards the end. This can feel like ‘sex beyond orgasm’.
• Don’t assume that orgasm means effort. Some sexual traditions suggest that instead of tensing up to reach climax, you simply relax. Stop moving, slow down your breathing, don’t try in any way at all — don’t even try to relax. With a little practice, if you focus on the stimulation but without any physical work, climax can happen all by itself — and is often even more extraordinary than usual.
• Learn about ‘self-edging’ — the art of holding yourself back from orgasm by taking lots of small breaks. Taking those breaks will mean that you don’t tire yourself out as much. But it can also lead to very enjoyable sex because getting to the ‘edge’ of climax then pulling back allows more blood to flow into the genitals and this means a longer, stronger orgasm eventually.
• Try ‘partner-edging’. If your partner is comfortable with the idea, get them masturbating, but then tell them when they’re to ‘start’ and when they’re to ‘stop’. You control their arousal moment to moment — of course, you also get to decide when they come!. The joy of this is that you get to pleasure your partner and deliver their orgasm — but with minimal effort!
• After sex, your body produces even more of the hormone, oxytocin — that makes you feel happy, relaxed and secure. So if you’re with a partner, snuggle up. If alone, then take time to enjoy the beautiful sensations as arousal dies down. Remember the pleasure that you’ve just experienced — and celebrate that your body has given you that gift!
• And you should sleep like a log.
These guidelines, advice and tips can work for anyone having or wanting to have sex. We are not trying to make people with fatigue feel as if they need to have a different type of ‘special sex’; we are just sharing our triumphs of being able to continue to enjoy sex, just like anyone else.
Factsheet: Resources and Reading
Helpline The Sex and Disability Helpline 0707 499 3527 (UK), 11am— 7pm weekdays
Audio CDs Come as you Are distribute a collection of erotic stories www.comeasyouare.com www.eroticsounds.net stocks another collection
Equipment Spokz sell swings, gadgets, cushions and furniture, including most comfortable and adaptable sex swing www.spokz.co.uk/products/sex-aid-sling.asp
Universal Cuff The Universal Cuff is an adjustable hand strap with pouch, It is made of elastic with a 4 inch (10 cm) long leather pocket. To determine your size, measure the width of the hand just below the (knuckle) joints. Available online.
Cybersex Miz Helena’s A guide to talking dirty and cybersex tips mizhelenasdatingtips.blogspot.com www.secondlife.com
Clubs Outsiders 020 7354 8291 firstname.lastname@example.org. www.outsiders.org.uk
Books New Joy of Sex by Susan Quilliam the best sex guide, which mentions disability often in its text. Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness by Miriam Kaufman, Cory Silverberg and Fran Odette Mantak Chia’s books on cultivating sexual energy and his Internal Energy Cultivation 7 DVD Set Playing with Disabilities — how some disabled people involved their impairments in their BDSM play, by Angela Stassinopoulos, 2008 Power Exchange Books
Articles Sex, Fatigue and Depression an article for spinal cord injured people by Stanley Ducharme, Ph.D. www.stanleyducharme.com/resources/sex_fatigue_depress.htm Fatigue or low libido affecting sex? For female breast cancer survivors www.breastcancer.org/tips/intimacy/ask_expert/2004_05/question_01.jsp Fatigue and sex drive discussing hormones and HIV www.thebody.com/Forums/AIDS/Fatigue/Archive/FatigueTreatmentDoNotWor k/Q161195.html Male Menopause & Chronic Fatigue Syndrome suggesting that men in mid-life might have hormone deficiency www.prohealth.com/library/showarticle.cfm?libid=8114 How to Increase Sex Drive With Adrenal Fatigue http://www.ehow.com/how_4793834_increase-sex-drive-adrenal-fatigue.html