- I rest in the afternoon every day and have done for 18 years. For most of my journey with CFS/ME/Pyroluria I have not had the full-on adrenal fatigue that goes all day, although in recent years I have had my fair share of those periods. Usually, though, I get to 1-2pm and it’s like somebody has suddenly taken my batteries out. A headache starts (or intensifies, as I usually already have one), and I feel totally exhausted. A sleep/rest of 1 1/2 – 2 hours helps me feel lots better so I can get through the rest of my day – and all the commitments that brings with it!
- I keep comfortable. We may not be able to be well at the moment but we can do a lot to make ourselves comfortable. Work out what comforts you and make sure you have plenty of it. In winter, I keep warm. I have a huge fluffy soft red dressing gown that makes a huge difference to me, as well as warm slippers. Basically, nurture yourself.
- I drink lots of water. I try to filter it, but not always. I do the best I can, but I try to hydrate myself well. I believe alkaline water is very good for you, but I haven’t gone down that track myself – yet.
- I eat lots of fruit and vegetables. If I can get fresh, organic food, even better, but I’m not obsessive about this. Fruit and vegetables in any form are way better than a lot of other things we can eat!
- I cut gluten and dairy from my diet (mostly). I’ve been generally dairy-free for more than 20 years, but the gluten-free regime has been more recent. I’ve dabbled in it before, but last year I really got serious about cutting it from my diet in order to give my body the best chance to heal itself. I know I have the gene for coeliac disease but have not had the gastroscopy to confirm it. Kinesiology testing says I’m extremely sensitive to gluten (as I am to soy, so I’ve had to cut that out too). Although I have cut these things from my diet in general, I am not obsessive about it. If the only thing to eat is a sandwich, I haven’t eaten and I really need food, I’ll eat a sandwich. I don’t have any severe, immediate symptoms of doing so, but overall, I just choose to be gluten-free for the reasons mentioned above.
- To aid digestion I sleep on 3 pillows, with a small one under my left side and a long cuddle pillow, as I get indigestion if I lay on my back or on my right side.
- I listen to music. Lots of it, and whatever suits my mood, but often it’s uplifting music such as the ones I suggest in this blog post.
- I use a calendar to plan my commitments. Even better, I put the commitment in my phone calendar so I get an alarm to remind me. Whether CFS is affecting your memory or not (I’ve never considered it has; I put it down to the fatigue, but I may be deluding myself!), having organisation in our lives helps reduce stress. The stress that comes from suddenly realising I have missed an appointment or have a short time to get to one can throw me backwards in my health. It’s not worth it.
- I wear a small handbag across my body, so I don’t accidentally put it down and lose it (I’ve always been quite forgetful even before CFS!). It’s also fairly light because I can’t fit heaps in it, so it doesn’t upset my neck and back, which have long been a cause of pain (partly due to a severe neck injury in my teens).
- I wear orthotics in my shoes. I have had orthotics since I was a teenager, and when I got them I couldn’t believe how the regular ankle and leg pain I used to have disappeared. I find when I wear shoes without them or go barefoot in summer around the house, my feet and legs get sore again. If you’ve never checked it out, it may be worth a podiatrist visit. They’re quite expensive, but without them I wouldn’t be able to walk far without great pain, even around the house.
- I have lots of bright colours in my home and wardrobe. Red, particularly deep cherry red, feels enriching to my soul, and other colours such as sky blue and grass green make me feel that bit brighter. Anything that brightens our day in our journey with CFS / ME / chronic illness is a good thing I reckon.
- I spend time in nature, particularly at my local lake and at the beach when I can get there (about 2 hrs from my home). Any time in nature is calming for me and helps me clear my head. Even sitting in my back yard in the sun is healing for the soul, if not the body. It all helps ‘fill my bucket’.
- I enjoy sunshine and expose myself to it any time I can. In summer I put sunscreen and a hat on of course, but I do feel so much better when it’s sunny. I always make sure my house has plenty of natural light coming in too.
- I light my house well with non-fluoresecent lighting. Since incandescent lights are no longer sold in Australia (grrr!), I use halogen or LEDs, which don’t give me the EMR headaches that fluorescent and down-lights do. During the day I flood my house with natural sunlight, and at night I don’t like bright lights in areas where I am working, so I put on a tall lamp just behind me when I’m watching TV or working on my laptop.
- I have baths. I have a bath almost every day late in the afternoon or early evening. It always revives me, eases my pain and helps me get through the rest of the day. I also have a shower in the morning to wake me up and get me moving, but I find baths ease my pain and energise me more than showers later in the day.
- I write in a diary or journal. I write poetry about my feelings or just write what I’ve been doing. Usually I am driven by strong emotions to write, whether I’m happy or sad or angry or anything else. I find writing cathartic.
- I go to CFS support groups or attend online forums (or have done in the past). Initially, in the early days of my CFS/ME journey (way back in the early 90s), I found a face-to-face support group once a month was incredibly supportive (as the name implies!). Talking to people who really GOT what I was going through helped a lot. I was somewhat nervous about going there initially because I didn’t want to sit around in a group whingeing about our ailments (my previous perception of what it would be like). I’m so glad I stepped through that pre-conceived judgment and went anyway, because it was nothing like that! It was a lovely, nurturing environment. (These days I also use Twitter & Facebook a lot to connect with the CFS / ME / Spoonie community)
- I talk regularly with family and friends, and get interested in their lives. You may not feel you have much to say, but just asking them questions about their lives will stimulate conversations topics. They will love knowing you’re interested. Check out my blog on “Enriching Relationships”.
- I walk (or do gentle exercise in some way). Even at my sickest I tried to walk even short distances to keep my strength up as much as possible, but this was/is sometimes impossible other than walking in the house (and even that’s sometimes very difficult in “bad” periods). Normally I try to walk 20 minutes a day, usually in the afternoon when it helps ease a headache. I always feel energised and motivated after I walk (when I’m not in adrenal fatigue). I don’t know if it’s the endorphins or what, but it’s like a meditation for me. It clears my head, helps me order my thoughts, and helps me explore my feelings when I’m not overwhelmed by other commitments. (NOTE: Lately, since my bad run health-wise last year, I’ve only just managed to start to do some short 10 minute walks. Occasionally I can do more, but I’m still recovering).
- I only drive relatively short distances. If I have to drive an hour or 1 ½ hours, I plan to rest when I arrive, or when I’m not well enough to drive that far, I plan rest stops. Sometimes I drive an hour, find a safe place to park, sleep in the back seat for 2 hours, then drive on to my destination. Needs must, hey? 🙂
- I take vitamins and minerals, usually suggested to me by my kinesiologist or naturopath.
- I juice vegetables (usually carrots, celery, beetroot and ginger). I’ve recently discovered a new pressed beetroot juice I can buy from the supermarket in the refrigerated section, so I cheat a bit by drinking that. It’s 90% beetroot and 10% apple. I’m not sure how much goodness is left in it, but I figure there MUST be some – and during my most fatigued days I find juicing quite exhausting. I do the best I can basically 🙂
- I don’t wear high heels much. They make me more tired and add to my pain, so unless it’s a special occasion (eg. wedding), I stay with flat shoes (that can handle my orthotics too). You may guess that I’m not exactly a glamour girl by any means. Lucky I’ve never worried too much about those sort of things or I might miss wearing towering high heels!
- I carry snacks with me to ward off blood-sugar drops. I work out my best options for easily portable snacks – like bananas and apples, healthy muesli bars and protein bars, nuts, sultanas – and have them with me at all the time.
- I use as many natural beauty and hygiene products as I can. For a long time I went totally natural, right down to wearing natural fibres. The theory was, the less non-natural substances my body had to deal with, the more energy it had to fight illness. It certainly helped during my most extreme illness periods. I have lowered my standards on this over time, but I definitely think it helps. Initially a kinesiologist identified it as the cause of certain headaches I had daily. I started using natural products and within 10 days those headaches had disappeared. That was evidence enough for me that using natural products was of benefit to my health. I also use natural cleaning products – mostly Enjo, which involve just water!
- I see a kinesiologist regularly (see previous). In all the people and practitioners I have seen for the CFS/Electrosensitivity, kinesiologists of different varieties have been by far the most helpful in supporting me to manage my symptoms (or completely make them go away!). I swear by kinesiologists, although there are many types, and every person is different, so find someone who you gel with, AND who is effective, and I’d be surprised if you didn’t get some positive effects.
- I have regular chiropractic treatments – NIP (NeuroImpulse Protocol) – a gentle form of chiropractic developed by Neil Davies, a chiropractor who happens to live in the town that I do! Bonus! 🙂
- I have become open-minded to any and all natural therapies. I let myself be the judge if something works or not. Frankly, if I experience a placebo effect or the real thing, I’m not too worried, as long as it makes me feel better. I’ve tried so many things in 21 years. Some help certain symptoms. Some don’t. Keeping an open mind has led me to many things that have been effective in treating my symptoms. I would never have found them if I had closed my mind to ‘non-scientific’, unusual therapies.
- I got a lot relief from pain by seeing a myo-fascial release therapist (I believe it’s like Rolfing and myotherapy also). It helped release emotions trapped in the fascia around the muscles. That might sound rubbish, but I swear it made a huge difference to me and reduced my pain levels in my back and arms to almost nothing. My therapist also helped me use breathwork (circular breathing) while she massaged, which I believe helped a lot. I still use that breathwork to this day.
- I’ve dealt with my emotional baggage through myo-fascial release, counselling, self-help books and personal development courses (particularly those at Landmark Education)
- I eat well. Lots of fruit and vegetables and good meat (mostly white). I’ve done all the diets – gluten free, dairy free, sugar free, anti-candida etc. None took away my major symptoms (not surprisingly now I know I have Pyroluria) but I know dairy-free (most of the time) and gluten free work for me. Recently I’ve found I’m sensitive to soy, so I’ve gone off that too. I use rice and almond milk in my smoothies, along with coconut water. Sugar is my biggest vice, but outside the festive season and holidays I do pretty well.
- I don’t drink alcohol much and never to excess. For a long time I had to abstain completely due to the indigestion it caused me, but now I can have one or two on occasion.
- Sometimes I just really enjoy the relaxing, pain-reducing effect of an alcoholic drink, so sometimes I have one 🙂
- For quite a few years I had a home help lady come for 1 ½ hours a fortnight and clean my house. It took away so much stress! These days I do it myself, but I would still qualify for a home-help lady. I think other people need their support more than I do now though, but if you do qualify for a similar service, use it! I loved my home help lady 🙂
- I go out occasionally, even if it’s to the pictures on my own. It feels nice to be out, especially with popcorn and a choc-top 🙂 Even nicer with company, but I do enjoy my own company too.
- I’ve learned to enjoy my own company – a much under-valued activity in our society.
- I’ve learned to say no (well, more than I used to anyway!). “No, that won’t work for me”. “No, I have another commitment at 1pm” (ie my afternoon nap!) :-). No lies, just a different way of saying it!
- I don’t drink coffee. For years it gave me indigestion anyway, but now I just don’t like that wired feeling the caffeine gives me.
- I have massages. If I had the money I’d have a massage every week. As it is, sometimes I find I need one twice a week, and if the neck/back/head pain is affecting my life enough to do so, I will do that (as much as it stretches my budget!). I really find I get a lot better quality of life after I have a massage, whether it’s Bowen therapy, remedial or other. Since the Electrosensitivity headaches started 11 years ago I find my neck tightens up a lot more from using electro-magnetic devices, so massages are essential for my quality of life, and I just find room in my budget for them because I know how important they are.
- I get as much fresh air as I can. I open windows in the morning (weather permitting), I open doors in warmer weather and air the house out, and as often as I can I get outside in the air, whether it’s gardening, walking or just sitting. I realise it’s harder for people in big cities, but getting out to a park with lots of trees improves the air quality, so just do what you can.
- I stay connected with the outside world. I get energy from connecting with all the high quality human beings in my life. Ultimately the connection I get outweighs the energy and effort it takes to stay connected. I love talking on the phone or catching up in person, but email and letters are great too. Sometimes just reaching out and saying “hi” to someone on Facebook, Twitter, Instagram or Pinterest can be enough to give me a “connectedness” buzz. It’s way too easy to become isolated when you’re managing illness and pain, so whenever I have the opportunity I make the effort. It always pays off.
- I go to a counsellor. Admittedly I haven’t done this consistently, but at different stages it has made all the difference to have someone completely separate from family and friends to discuss things with, and it has enhanced my life in many ways. During the worst period of my illness, it made such a difference to be able to talk out my feelings with someone I didn’t feel I was burdening. These days I just find it cathartic to have a regular counselling session to bounce my feelings and thoughts off someone who is not a friend or family member.
- I did the Landmark Forum and every other program Landmark Education (now known as Landmark Worldwide) offers. The difference these programs (and the tools acquired from them) have made in my life are beyond description. It’s not a magic pill, but I use the tools I got from the education every day of my life, and I’m so grateful someone finally told me about the course/training and development program in 2005. They don’t advertise. It’s all word-of-mouth – so now you know about it! 🙂
- I’ve learned I can change my context and change my experience of illness and pain to one that is empowering, rather than disempowering. It takes practice but it’s so worth it. I now know we create our own reality, so my take on it is “why not create an empowering context to live in”?
- I try as much as possible to let go of anger and resentment. I love that saying: “Resentment is like drinking poison and expecting the other person to die”. I probably wouldn’t have to try too hard to find things or people in my life to be resentful about or toward. But I just don’t see the point. I’m the one who pays for it in the end. So I’ve done lots of work on myself, read books, done courses, had counselling, and basically just done everything I can to deal with my negative, unproductive and destructive emotions so that I have the most energy for the stuff that really matters to me.
- I have the attitude of “everything in moderation”. I don’t have a super-strict diet (although it’s got a lot stricter since my past 9 months of stomach parasite/virus repercussions!). Over the years I’ve tried most health diets, such as no sugar, no preservatives, no dairy or gluten, anti-candida – you name it I’ve probably tried it. Some things help some symptoms, so I tend to avoid dairy and gluten, but not obsessively (again, this HAS changed in recent times as mentioned above. I’m getting more strict and obsessive because it gives my body the best opportunity to heal itself). I know sugar is not good for me, but I’m a sweet-tooth, so I have it sometimes, probably more than I should, but I’ve lived through the super-strict diets, and as well as being hard work, often expensive, and not much fun, none of them made any huge difference to my health. Saying all that I am a huge advocate of preventative health measures – good nutrition, exercise, whatever helps our bodies to be the best they can be! I just don’t tie myself in knots and get all anxious if there happens to be a little sugar, dairy or gluten in a meal when I’m out (NOTE: I’m not coeliac as far as I know. If I was, I’d be more cautious about even small amounts of gluten)
- I know certain things are good for me and I do my best to eat those things or abstain from those that I know don’t agree with my body. Ditto lifestyle things like yoga (good), overdoing it (bad), etc, etc.
- I don’t smoke. I once was a casual smoker in my late teens/early 20s, but now I just don’t see the sense in it when I’m doing so much good stuff to manage my health. I have enough health problems without creating new ones!
- I don’t take illicit drugs. Refer to above (and I’ve also never been interested in using them anyway).
- I’ve taken victim language out of my vocabulary as much as possible. I try not to say things like “I’m a victim of CFS”, “I am a CFS sufferer” or “I suffer from CFS”. I prefer “I have CFS”. It takes the drama and the victimhood out of the statement. Being a victim infers I have no power, I believe, and I know that is not the case, and certainly not the context I want to live in (see this blog for further on this topic). I also don’t refer to myself as disabled. I rarely even say I have a disability because I don’t think of myself that way, but I think that’s more a personal preference, not victim language. I am on a disability pension, and in terms of what constitutes “disability”, in many ways I indeed do have a disability. I guess I just don’t pull that card out too often. Similar to the fact I rarely pull the “single Mum” card out. All these things immediately give people pre-conceived ideas about who I am as a person and I don’t like what some of these terms have come to represent.
- Taking the drama out of my language is something I’ve recently been working on – amazing how much I find I use dramatic language. As I believe we “create our reality” via language, this has often led to my life being quite dramatic. Removing the dramatic language is seeing my life become quite a bit calmer 🙂
- I dress well when I go out of the house, which makes me feel prouder of myself. I also often make the effort to get dressed in something comfy, but smart when I’m just at home working or laying on the couch. It makes me feel much more like a normal human being who belongs in society than if I stay in my PJs all day. Saying that, I’ve let go of that a bit of recent times. I quite enjoy just having a Pyjama day (reminds me of my friend’s great spoonie/chronic illness support blog www.PajamaDaze.com – how cool is that name?! The website is even cooler!)
- I’ve learned to embrace frozen vegies (not literally cos that’d be chilly ;-)), but when I’m feeling particularly unwell and really don’t have the energy or inclination to cook a proper meal, I have frozen vegetables on hand. They may not be quite as good as fresh vegies, but because they are snap frozen most of the nutrients are retained. I cook them quickly in the microwave, throw them with some rice, pasta or mashed potato (if I’m more energetic), some oyster sauce or whatever you like, and maybe some stir fried chicken or beef (once again, if I’m more energetic), and voile – a reasonably healthy meal that takes little energy!
- I use the microwave to cook more than I used to. I still prefer stove-cooked vegies, but sometimes beggars can’t be choosers. A quick microwaved meal is better than the other quickie choices I may make – takeaway, 2 minute noodles (yuk!), toast or nothing. Not perfect, but way healthier and cheaper than takeaway or nothing.
- I make larger meals, then put a couple of serves in the freezer for nights when I’m not as well and/or I put a couple of serves in the fridge for the following two nights. See this blog by the Hillbilly Housewife for great tips on freezer cooking.
- I have learned the value of good quality plastic containers – namely, Tupperware! Before I became a Tupperware demonstrator in 2004 I owned 3 pieces of Tupperware – the beetroot holder, a spatula and a big colander I never used. Otherwise I had cheap, plasticky-smelling containers that never sealed properly. After a short time I was converted to Tupperware because it really does do a great job. The pantry containers help me keep organised and know what I have, and what I need more of (without needing to think too much), so I don’t waste food and money, and can easily make a grocery list . The fridge containers keep my fruit and veg fresh way longer. Ditto for my cold meats. The microwave containers are a much tougher plastic than other brands, which means they don’t leach as many chemicals (if any) into my food. Yep, I sold the stuff for almost 7 years, so I kinda like it, believe in it, and could talk about it forever. I don’t sell it anymore but I still think it’s worth buying quality if you can. It saves you money and I also do believe the types of plastic they use are much safer than cheaper brands. Maybe I’m just brainwashed, but I don’t think so :-).
- I make big all-the-vegies-I-have-in-my-fridge-and-cupboards soups and have enough for a few serves in the freezer (in Tupperware of course!) and a few in the fridge. Easy, quick, cheap and healthy!
- I get my teeth and skin checked regularly. I figure I should look after the things that DO work in my body. A tooth-ache just adds to my CFS symptoms and I don’t need that. Ditto skin – I get it checked for suspicious blemishes/moles so it’s one less thing to worry about. Remember, I live in Australia where the incidence of melanoma is the highest in the world.
- I have regular Pap Smears and breast checks for the same reason as the above. Very soon I will start having a Colonoscopy on a semi-regular basis as there is bowel cancer in my family. And I guess mammograms aren’t that far off for me either. I will get these tests done so as to at least make sure nothing else develops ON TOP OF the illness I already have.
- I connect with others living with CFS. Whether it’s through face-to-face support groups, friends I’ve met over the years, online forums, Facebook pages or Twitter, I find it helpful to stayed connected with others living with similar symptoms. Sometimes it helps give me perspective. Other times it’s just nice to talk to people who truly get it. (See my blog of CFS/ME/Fibro people on Twitter – it needs updating, so if you’re not in it, let me know!)
- I get enough sleep. A rather ironic thing to say for someone with CFS / ME. Of course sleep is a part of the management plan. We sleep all the time, right?! 😉 Well, I have always felt better in the evening and have often had trouble getting to sleep. Sometimes this leads to me resisting going to bed. I continually have to force myself to go to bed earlier, but it pays off when I follow through.
- I take medication to help me sleep. Since developing Electrosensitivity in pregnancy, I almost always have a severe headache at bedtime and as sleep is all that helps this pain, I take a small dose of Valium and melatonin drops to get me to sleep. Even pre-Electrosensitivity headaches I used to struggle to get to sleep. Then and now it could easily take me 2-3 hours to get to sleep without medication. The melatonin drops were prescribed to combat this (as it appears some people with CFS could have lower/abnormal melatonin levels), and in earlier days I used low dose tricyclic anti-depressants to get me to sleep. Sleep is my greatest healer, so I get it any way I can at night. During the day I take no pain or other prescription medication as I don’t find any of it helpful.
- I’ve learned to not be in such a hurry! Being a Type A personality I have always been in a hurry. Now I’ve learned to stop and smell the roses more (sometimes literally. I have lovely roses!).
- I’ve learned not to think too much on the really bad days. I get through them by focusing my mind outward and distracting it from the pain and/or fatigue that won’t go away. It stops me getting frustrated and feeling sorry for myself too much. Methods: Podcasts, audio books, paper books, TV.
- Occasionally I let myself feel sorry for myself. As long as the pity party is a short one, I think it’s good to occasionally have a good cry, write all my feelings out in a journal and just acknowledge that this isn’t exactly my dream life. Then I get up, dust myself off, and get on with it. Pity party over!
- I have smoothies for breakfast – a relatively new development since my horror last 12 months.
My recipe is usually the following:
Frozen Blueberries (about a cup)
Chia Seeds – a Tbsp in boiling water to soften
2 Teaspoons Spirulina powder
1 Tbsp Kale Powder
Coconut water or Rice or Almond Milk
Process in a blender.
On serving, add 1 dessert spoon Bulletproof Upgraded MCT oil (recommended by my kinesiologist)
I make a double batch and keep half for the next day to save energy and time. This probably loses some of its goodness, but it’d take too much energy and effort to do it daily, so in the interest of compromise AND sticking with the habit, I do it this way. NOTE: I never put the Bulletproof oil in until just before I drink it. It turns the fruit rancid if you try to store it overnight with the rest of the brew. Learned that the hard way! 😉
- I do yoga. I’ve gone to a weekly class for 15 years (give or take a few breaks for post-pregnancy and really bad bouts of the CFS etc). It’s 1 ½ hours of gentle yoga. Sometimes I do it all. Sometimes I do barely any, except the very basics. In between I just lay and concentrate on my breathing. Other times it’s something in between. We do breathing and relaxation for about 10 minutes at the start of each class, and about 15-20 minutes of relaxation at the end. Sometimes we also do special breathing exercises in the middle, which are the basis of certain meditation practices, I believe. Completing the whole class challenges my body, but I find it makes a huge difference to my general aches and pains, plus it calms my mind. When I’m too ill to attend class (like the last 11 months), I do gentle stretches at home, even if it’s just while I’m in bed. When I AM doing classes I do the morning class so it finishes just before lunch. I come home, have a protein drink (non-dairy or soy), eat some lunch, then go for my afternoon nap to allow my body to recover.
- I do Ujjayi breathing, which is a form of yogic breathing I’ve learned in my classes. You do it by slightly contracting the tongue up towards the roof of the mouth, as if you were trying to do a ‘fake’ snoring sound. It ends up sounding like a quiet snoring/wheezing sound that other people cannot really hear if you’re doing it properly. At the beginning, especially if you’re not lying down when you do it, I feel a little light headed, but it’s more a clearing affect in my head. I find that if I’m really struggling for energy and I have to stay alert or get through some sort of event, that it makes a huge difference to my energy levels if I do it constantly. I even do it when driving long distances, which leaves me feeling energised, calmer and more focussed.
- I meditate. Admittedly I don’t do this as much as I would ideally like to, but I do aim to do some sort of meditation every day. I don’t have a specific time dedicated to it, which is one of my eventual aims, because I know it would work much better if I did that. Sometimes I do it in my daily bath. Sometimes I sit for 10 minutes before bed and meditate in the silence of late night. Sometimes I do it when walking. To me, meditation comes in many forms. I am now able to sit and just focus on the black behind my eyes without any guidance, but for many years I used guided meditation tapes or CDs (a few years ago when there were no mp3s!). In 1999 I went to a retreat at the Ian Gawler Foundation in the Yarra Valley near Melbourne. I learned many forms of meditation that week, and it opened my mind to the possibility of meditation for me because I learned that you didn’t have to completely stop your mind to meditate (a misconception I had). I thought I was a complete failure at meditation prior to that because I couldn’t just stop my mind and do the “Ohm”-type meditation. I learned even walking can be a type of moving meditation. I think it’s more mindfulness than meditation, but the aim of both (or part aim) is to stop the constant chatter of the mind. As my mind is constantly thinking of new things to do with my blog, business, household, child etc etc, meditation is hugely important for me in any form!
- I listen to audio books on Audible (or any way I can, but I find Audible so handy as I can use the app on my phone – then put the screen on lock & it doesn’t affect my electro-headaches!). I use audio books and podcasts for all sorts of reasons, but regarding managing CFS / ME, I find they’re great to listen to when my body is exhausted, but my mind just won’t stop (& won’t let me sleep). I get restless if I don’t focus my mind, & my mind can also wander off into a negative wilderness that is not a nice place to be. Audio books & podcasts take me off into other worlds – usually the world of personal development, online/offline business and spirituality (to name but a few topics I’m interested in!)
- I listen to podcasts (as mentioned above, but it deserves its own section cos I love them so much!). I first discovered podcasts when I found Hamish & Andy (a Melbourne radio comedy duo) had them to download for free (they’re not all there anymore on the site, but I have most of them downloaded! Yay!). As I find them hilarious and we don’t get Melbourne radio in Ballarat, I found I could download them & listen while resting in bed. Due to how funny they are, I found it slightly dangerous to listen when I was hoping to fall asleep (belly laughs not being good for sleep), but laughter IS certainly good medicine. These days I’m addicted to Pat Flynn’s Smart Passive Income podcast and Jeremy & Jason’s Internet Business Mastery, but I keep finding more & more great ones. Read my The Joy of Podcasts blog for more info.
- I choose to watch funny TV shows and movies as much as possible, as opposed to anything revolving around crime, hospitals or general drama. Don’t get me wrong, I love any good TV show or movie, whatever the genre, but years ago when I was quite low (READ: depressed), I realised anything that wasn’t uplifting just drew me down further into the pit of misery that I was already tending to dwell in anyway. I decided I didn’t need that. In the last 11 years since developing Electrosensitivity, I now get severe headaches from the TV, so if I’m going to watch it (which I still do – read my blog “The Dilemma of Pain: An Unusual Choice” for why I’m THAT masochistic!), I want to watch something that makes me laugh or lifts my spirits. I love a good singing competition show or Glee – and The West Wing on DVD (it has lots of wit, but it’s not exactly a comedy! BUT it’s awesome!!). So, yes, I break my own rules sometimes, but basically I choose shows that bring me joy rather than make me too sad about the state of the world.
- Following on from the last one, I don’t watch the news on TV, and hardly read the papers anymore either. It depresses me to see all the negative, fear-inducing stories that are focussed on in news bulletins, and I often end up in tears because I find so much of it incredibly sad. I just don’t need that on top of all I’m dealing with in my own life. I once consumed news voraciously, as I believed I needed to know it all so I wasn’t left in the dark, and also that if I watched all the horrible stuff going on that it somehow acknowledged to those going through it that I was with them. BUT I’m a highly sensitive, empathic, emotional person who feels such intense empathy for people that I end up ‘feeling their pain’ quite literally though my own body. I end up in tears (quite badly at times), and I just decided some time ago it was doing me more harm than good. Lately I’m so focussed on my blog and eBook etc that I hardly even read newspapers or listen to the radio. So far I haven’t missed much (or not that I know ;-)!)
- I continue to pursue my hobbies/passions/purpose. Right from the start of my illness 21 years ago I’ve found ways to still follow my passions in some way or another. I have a strong view that losing our sense of purpose in life is a huge part of the grief that we face when hit with CFS / ME, so I’ve spent many years reclaiming that sense of purpose. I’ve done it in all sorts of ways – photography, drawing, videography (I love interviewing people & started a business around that at one stage), and now online business, blogging and writing eBooks. I sooooo wish blogging was around in the early 90s because I would have been right into it (and quite possibly be some internet sensation by now ;-). I can dream!)
- I drink a cup of Dr. Morse’s Heal-All Tea each day (for the last 4 months). It has a refreshing, bitter taste so I quite like it, plus it’s full of traditional healing herbs. So far one pack has lasted 4 months as I only use a teaspoon every 2 days, so it’s very reasonably priced at around US$30. I brew it in a tea pot then add hot water to it when I feel like a cup. I think it has helped me recover from the stomach parasite and virus I had last year – and I haven’t had a cold in ages. It certainly hasn’t harmed me anyway, and it’s better for me than tea or coffee.
- When I travel (even short overnight stays or day trips), I plan well and have learned many energy-saving tricks (see the following few tips).
- A suitcase on wheels is a must, even for short overnight stays (anything to conserve energy!). I sometimes take a backpack rather than an overnight bag if it’s a small trip. Then I use the backpack to carry everything rather than a large handbag, which would take more energy to lug around. Actually I usually take a backpack on any day trips or longer stays because I find it easier to carry all my daily essentials (water, healthy snacks, hat, sunscreen etc.) because it distributes the weight across my back as opposed to just one arm or shoulder.
- I always take an eye cover (like on the aeroplanes) and also earplugs (just in case). Both are permanently packed in my backpack so I don’t forget them.
- If I’m going by car I have pillows and a doona or sleeping bag in case I need to stop and rest. The eye cover also comes in handy for “car naps” if they are during the day, which mine always are (and I don’t mean car naps when I’m driving – Refer to #20 on this list).
- I carry a bottle of water with me almost all the time. In Australia it’s easy to find places to refill it and it means I stay hydrated, have something to take my vitamins with and saves me money, and also the temptation of buying and drinking sugary drinks.
- I occasionally let loose and drink sugary drinks, eat chocolate, lollies and pizza – or whatever else I see as a yummy treat. Sometimes I do it more than occasionally. Why? Cos I’m human! 🙂
- I try to go by the Tao teachings of “Allow, Allow, Allow”. In Anita Moorjani’s book “Dying To Be Me: My Journey From Cancer, To Near Death, To True Healing“, which really had a huge impact on me, I love listening to Chapter 17 (20 in the audio book) about how she now approaches life by allowing and surrendering to life. She says she now lives her life “coming from love instead of fear”. That’s what I aspire to do, and, as verse 20 of the Tao says, “I try to accept what is offered”. It’s a challenge, but it’s a good thing to aim for I reckon! See how challenging it was for me last year in this blog and those that followed! 🙂
- I don’t hold dogmatically to any one set of beliefs in a religious sense. I try to take the things I find useful and sensible from all religions and live my own ‘truth’, which involves a certain level of spirituality but not religious dogma. I respect others who have different beliefs than mine though. Everyone is walking their own path.
- I laugh. A lot. I laugh at the simplest things and the most complex things. Keeping my sense of humor has been a life-saver for me. I recently did a rather ridiculous video and posted it on YouTube in an attempt to win a t-shirt. I was challenged by a certain author to photograph his book “in the wild”, then post it on Twitter and I might win a t-shirt. The concept of photographing it “in the wild” just made me think of a Steve Irwin-style video. So I did one! 🙂 For better or for worse, here it is. Despite the fact it makes me cringe to watch it now (and it sends a little shiver of terror through me to be sharing it on here) when I was doing it I laughed so much before, during and after it. I didn’t care if anyone else found it funny. I’d had a ball creating it.
- I continue to step out of my comfort zone. I do this in managing CFS and EMR pain as well as in the rest of my life (see #84 for proof of that!!). I find that occasionally testing the boundaries of my physical abilities is necessary in order not to get stuck in a rut, and to also explore whether I am indeed capable of more than I think I am. Sometimes I surprise myself and find I CAN do more – walk further/cope with something I couldn’t before. Sometimes I find I can’t, but at least I know that and know, for now, I need to stay within the current boundaries. It’s not forever though. Just for now.
- I have a strong belief in mind/body health and try to nurture mind, body and spirit as much as possible. Louise Hay’s book You Can Heal Your Life changed my world and challenged my thinking in a massive way – when I read it in 1995. Since then I’ve explored much further into the mind-body connection, including researching PNI (psychoneuroimmunology) in my psychology degree. There is more and more science to prove the connection, but sometimes I wonder why we need it. The head/mind IS part of the body. They are not 2 separate entities. Ergo, of course they’re inextricably connected! It seems common sense when you think of it like that (and try to think of sucking on a lemon without your mouth salivating. You can’t! Mind affects body. Body affects mind. Confirmed ;-))
- I’ve stopped searching for the ONE answer to all my problems. In many ways, when I stop “searching” that’s when I find the answers come. My Pyroluria/ pyrrole disorder diagnosis came out of me asking a prominent chiropractor who lives in my town if maybe he could do anything about my electro-sensitivity problem. He tested me, saw the distinct neurological change when the TV went on, did his research (he lectures all over the world so has lots of contacts), and he found Tracey – my chiropractor/kinesiologist who diagnosed the Pyroluria which could be causing the CFS and the Electrosensitivity. A urine test confirmed that diagnosis. This all came from a very casual question asked during a routine chiropractic appointment. I just knew my chiropractor, Neil Davies, had been the founder of the NIP (NeuroImpulseProtocol) technique of chiropractic, so I thought he might have some ideas about the EMR sensitivity. And he did!
- I break up my chores into bite-sized chunks. Even if I can only do 5 minutes at a time, I do it that way. I often set a timer (especially on my ‘bad’ days) and force myself to sit down after 5, 10, 15 minutes, depending on my current state of health. I always have the tendency to overdo it and often feel at the time that I’m feeling well enough to continue – only to pay for it later! I’ve found it’s amazing how many dishes you can get done in 5 minutes! Try it and let me know how many you do (we often put these things off because we make them bigger in our heads than they really are!).
- I trust that I know what works for me and what doesn’t. Sometimes the things I know work to improve certain symptoms have no apparent scientific basis – YET! And many things that don’t work for me have lots of scientific evidence why they should work (and sometimes they even have the opposite effect on me than science says they should!). The number of times I’ve had a medical or other practitioner describe my results/readings/tests as ‘unusual’, ‘very rare’, ‘one out of the box’ or exclaim ‘I’ve never seen this before’ … well, only spoonies would truly understand, but it’s happened more times than I can remember.
- I’ve learned not everything can be measured in modern scientific “evidence-based” ways. That doesn’t mean they have no efficacy (ie. they don’t work). It just means – possibly – science hasn’t caught up yet. If I believe something is helping, I stick with it. Even if it’s a placebo effect, I really don’t care. It’s having the desired effect one way or another.
- If I’m going to take a new treatment, either on my own (i.e. a certain dietary change/exercise regime etc.) or via a practitioner, I always allow for at least 6 months (or 3 at a bare minimum) for the treatment/regime to show results. (Unless, of course, I have a severe negative reaction very quickly. Then I stop it immediately or reduce the dosage/treatment considerably). The 6 month rule allows the person treating me and the actual treatment to have a decent amount of time to show results. In many ways I think it’s only fair and respectful to myself and the practitioner to approach it this way. All spoonies/PW CFS /ME know the hope/disappointment cycle of trying new treatments. Giving a new treatment/dietary change only a month to prove its results is not giving it much of a chance, and will likely leave you in that flat, resigned, disappointment phase. And considering how long you’ve probably been ill (including the “becoming ill” phase) expecting a turnaround in a few weeks is a recipe for disappointment.
- The previous point/approach came about due to being bombarded by possible treatment options (especially at the beginning of the illness) by well-meaning people whether it be practitioners, friends, family or mere acquaintances. As I wrote in my blog “overwhelmed by choice,” this experience can, indeed, be overwhelming and add to the stress you’re already experiencing. Giving myself the rule that if I’m going to take a new treatment on, I have to commit to 6 months, gives me a clear guideline to go by. And it’s useful to be able to tell people, when they are suggesting (or insisting) I must try a certain treatment they swear by (or saw on A Current Affair!) that I appreciate the suggestion and will definitely keep it in mind to try out if my current treatment regime doesn’t pay off. That leaves them feeling appreciated, and there’s no upset on either side!
- Before I try any new treatment I make sure I’m mentally ready for it. How? see #95 and beyond
- The boom/bust cycle of treatments I’ve tried over 21 years has shown me that after a “bust” – when a hopeful treatment has not yielded results – there is a period of grief I experience. I feel disappointed, often angry, sad, and often resigned to ever finding an ‘answer’ or ‘cure’. I now know I need to give myself time to process those emotions – to allow them to be there and to just “be” in that space for a little while. After putting in a lot of hope, time, effort and commitment into a regime/treatment, only to find it had no noticeable effect, it’s bloody hard to take (pardon my French!). I let myself have a bit of down time to process that deflated feeling, lick my wounds (often by eating chocolate and other things that aren’t healthy), and build up the physical and mental reserves before I try the next thing. Frankly, I let myself “give up” for a while. I know I’ll buck up eventually, but I allow a bit of wallowing and feeling sorry for myself before I even consider trying anything new.
- (part 2 of above). After I’ve allowed myself a ‘pity-party’ period, I often go along with the status quo for a while, but eventually I once again get to a point where I’m totally sick of being sick, tired and in pain, and I realise it’s time to try yet get another treatment. And so the cycle begins again.
- How do I know which treatment to try next? Often there are things I’ve heard about over time that I’ve always thought I’d try eventually. I’ve tried most treatments over time, but still, after 21 years, I have a list of things I could still try. So I may try one of them. I also made a little rule for myself that if I hear about a treatment or practitioner 3 times or more in a short period of time (through 3 different sources), that is a sign I should give it a go. Not exactly a scientific method, but I guess it gives some structure to the chaos, and I also believe synchronicity plays a part in our lives. Sometimes it’s just a handy ‘rule of thumb’ to get me into the right frame of mind to try something a new.
- Finally, in the above process, I assess my mental state and consider whether I have the mental (and physical) energy to commit to following through on a new regime or treatment. Am I willing to commit the time, money and effort to doing it the way it’s intended to be done? If I’m not in a mindset to do that, I might choose to wait a while, because taking on a new treatment/practitioner/regime without the right mindset often ends up just a waste of money, time and effort for all concerned. I’ve done that a few times over the years and seen the negative consequences. I’ve learned from those experiences and would rather go with the status quo than take something new on in a half-hearted, uncommitted way – because you usually end up back at the status quo anyway in those circumstances! 🙂
- I make decisions about treatments because I want to try them NOT because someone else wants me to. Someone might guide me to a treatment or practitioner, but, ultimately, I’m the one who has to follow through, and thus, I take responsibility for the choices I make. I choose to follow a practitioners ‘prescriptions’. It is part of my commitment to trying the new practitioner/treatment in the first place. I trust their knowledge and experience – though I do ask plenty of questions – and, even if I’m a bit doubtful, I follow through – with the following exception …
- If a treatment/regime/practitioner really doesn’t feel right for me – and I mean REALLY, like I believe it may be harmful and/or go against my values (or just my deep, gut feeling), I stop the treatments or do not go back to the practitioner (usually I don’t just disappear. I just let them know it’s not working for me on a values (or whatever) basis). If I truly don’t feel I can trust someone (or a treatment) – and I’m one of the most trusting people you’d come across, so it’s not coming from being generally skeptical of people – then I don’t ever compromise my own integrity. I admit I have done in the past, but I learned from that. I know myself and my body very well these days. Using kinesiology (and even a pendulum – not as hocus pocus as it sounds!) is an even better way of clarifying a gut feeling, so if I can use these methods, I will.
- I keep learning every day and stay open-minded. I continue to believe there are answers out there to my various ailments and that I will find them or they will find me! I am not voraciously searching for a ‘cure’ anymore. I do hope the Pyroluria treatment has a profoundly healing effect as I believe it will. But my kinesiologist clearly told me she thought it may take 18 months to 3 years for my body to get back to where it should be. I hoped it’d be quicker, but so far it’s been 18 months (interrupted by a stomach parasite and virus!). Ultimately though, I NEVER GIVE UP HOPE! WITHOUT HOPE, WITHOUT POSSIBILITY, WE HAVE NOTHING!
- I’m human. I don’t always follow my own advice. All the ways I talk about above to manage CFS are things I do regularly or have done over the years. BUT I’m not perfect. I do sometimes just want to give up. I do sometimes say “stop the world, I wanna get off”, and I do stuff that doesn’t serve me. If you do that too – which I’m guessing you do – the best favour you can do me and you is FORGIVE YOURSELF! We can only do the best we can in any given moment. That’s what I aim to do and that’s what I’d love you to do too! 🙂
I hope you’ve got something valuable out of hearing about many of the ways I manage CFS / ME. There are probably at least 101 more that I haven’t put in.
If you’re interested, I do have a limited number of one-on-one coaching sessions available. Please go to my Coaching page for further information on that.
I’m also working on developing online group coaching programs, so stay tuned for those. If they would be something you’d be interested in, please email Louise@GetUpAndGoGuru.com and I’ll put you on my waiting list and let you know when they are up and running.
Louise Bibby 🙂