Louise’s Tips For Managing CFS/ME Part 1

As my business it It’s My Life DVDs I thought I’d write a bit about my life so that the people I am meeting and connecting with on Twitter and other social networks can get to know me a bit better.                  Louise - Wedding - 12.6.08

Rather than telling my whole  life story right here today, I’ve decided to focus on an area of my life that has been with me for almost half my life now. That is, I have had the illness chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) for the past 17 years – and possibly longer. Boy, when I write that it sounds quite awful, and I guess at times it has been, but what I really want to write about today is my tips for managing this enigmatic, misunderstood, debilitating illness. (After writing it all, I’ve decided to break it into 2 parts for ease of reading).

For those of you unfamiliar with what CFS/ME is, I won’t go into full detail here, but I’ll tell you my symptoms. They have varied a lot over the years, with some things being much worse at various times. My current situation is quite manageable, but maybe that is because I’ve had 17 years to learn how to manage the symptoms. My major symptoms are: fatigue (I rarely feel refreshed after sleep & if I do it doesn’t last long), I have got used to feeling tired most of the time. Some days I feel like I have the flu and barely have the energy to get out of bed, but thankfully those days are rare now as I’ve learned how to manage my fatigue. The major way I manage is by having a sleep in the afternoon – about 1 1/2 hours, sometimes more if I don’t set my alarm or my daughter is away.

It’s impossible to describe the fatigue but the way I describe it is that even if I’m feeling quite good, I hit about 2pm and it’s like someone has reached into my body & taken the batteries out. Then it’s like I’ve hit a wall (or it’s hit me) & if I don’t already have one, I get a headache, sometimes feel dizzy, & basically try to get to bed as quickly as I can. Now that my daughter goes to school I push on till I pick her up, then I rest. She is used to it, & knows I’m just in the next room.

I could go on and on trying to describe the fatigue, & I have done over the years in a bid to get people to comprehend what I’m going through. These days I’ve largely made my peace with the fact that unless someone climbs inside my body & becomes me, no-one will ever truly know what I mean when I say fatigue.

I also get lots of headaches, digestive problems, bowel problems, have many food & chemical sensitivities … you know I kind of forget all the symptoms as they’re just part of my life, but basically it’s a big mix of unpleasant symptoms, which is what makes it a syndrome.

On top of all this, during pregnancy 6 1/2 years ago I developed electro-sensitivity, which means I get terrible migraine-like headaches from everything electro-magnetic – from this computer to fluro lights to the tv to telephones of any sort, especially mobile phones, the car, the heater … the list goes on. So why am I sitting here inflicting pain on myself? Well, it’s a long story, but basically I chose to live my life with headaches as opposed to trying to avoid headaches (ie. the world) & live like a hermit. Maybe I’ll write a blog about that aspect at another time.

In this blog post I’d like to give people my top tips for managing CFS. As well as being a contribution to family historians, genealogists and others interested in capturing people’s stories on video, I also want to be a contribution to the CFS community that I have been a part of for so many years. Also, as I said my business is called It’s My Life DVDs, so I want to give readers of my blog some insight into what “my life” is.

[NB. I know there is great conjecture about what the illness should be called, but just for pure ease I will use CFS here, as it is still what the layperson commonly knows it as. ME is probably a more apt description, but the illness is what it is unfortunately regardless of the name we give it]

Louise’s Tips For Managing Chronic Fatigue Syndrome

1. Have a routine – I found in the very earliest & darkest period of my experience with CFS that maintaining some type of routine in my otherwise routine-less life gave me some sense of normality. I worked out back then that the best time for me to get up was 9am – if I got up earlier I was exhausted by 10, if I got up later I still felt exhausted by the same time as if I’d got up at 9 – so 9am I set my alarm and regardless how I felt I got out of bed, had a shower, had breakfast & made my bed. Sometimes that was all I could manage & I’d flop on the couch and watch TV. On a ‘bad’ day – & those with CFS will know what I’m talking about when I say bad day – I sometimes would stay in bed, but even on those days I used to try to do at least that basic routine. From there on, I always had a list of things I wanted to do, but often they didn’t get done. But I always had some basic aims for the day. Back in those days I’d look at my Mum (I had to move back home at that point), doing all the usual life things like cooking dinner, cleaning the house, managing a household, & I couldn’t even imagine how I could ever do that again. Luckily things change!

Anyway, these days my routine is busier as I have learned to use various tools, diet changes etc to manage the illness, but I still have a routine. Having a child and CFS are not a great mix, but somehow I’ve made it through 6 years and I’m doing quite well. My daughter started school this year, so that provided some new challenges. It means rising earlier, pushing past the tiredness, headache etc into the shower, breakfast, get my daughter ready, drop her off at school, then usually I try to work until it’s time to pick her up. As I work from home, ‘work’ comes in many forms, and often involves phone calls, computer work, friends dropping in, but generally I try to work school hours Monday to Friday.

Now sometimes work for me involves 15 minutes on, 15 minutes off. Sometimes I just have to give into the fatigue & sleep. Other times, depending on what I’m doing, I can get longer out of my body.

But one thing that is virtually non-negotiable is my afternoon nap. As I said, now I have to pick S (I prefer to keep my daughter’s name private) up from school, I have to push on through the exhaustion for a bit longer. But I have made it a priority to be there for her at the end of school, so that is just what I do. We have a lovely talk on the way home (10-15 mins) about her day, then when we get in I make her afternoon tea, she gets to watch ABC Kids on TV, & I retire to the next room to sleep/rest for 1 1/2 hours. I don’t always get to sleep, even when I’m exhausted, but that time out gives me a boost to get through the rest of the day. If I don’t do it, I feel horrible for the rest of the day – & that isn’t good for my patience (read temper) as a parent or for my husband, or for me. S always knows she can come into me at any time, but she generally doesn’t disturb me much. When she was a baby I had her well trained to have her afternoon sleep when I had mine – subsequently she kept having the afternoon sleeps till she was 3 1/2 because she always knew I was sleeping when she was, so she wasn’t missing out on anything!

Something I want to point out through is, over time, although I know I feel better with my mid-afternoon nap, i can get through the day if I have to. Once I was terrified to miss my nap due to the fear of how awful I feel when I do. I’ve got over that fear. If there’s a course/seminar I want to do that is all day, or 3 days in a row, I can do it. I feel pretty average after 3pm, but I still function ok.

So what was for many years a non-negotiable nap has now become a bit more flexible and thus given me more freedom to say yes to events – work, family or personal – that I once would have seen myself as unable to do. By slightly pushing the boundaries every now and then, I have surprised myself. I usually need a day or two to recover from a full day out – or a week if it’s a 3-day course. But if I deem it important enough I can do it.

There often seems to be so much in the “I can’t” basket with CFS, so realising an “I can’t” is actually “I can … at least sometimes” is very freeing. Much of the time, it’s not actually that I can’t but that I don’t like/want the consequences if I do. Changing the vocab to “I choose not to due to the negative effect it has”, gives me some power back – leaving me/us less of a victim.

Something else I also do now is try to prepare as much as possible the night before, as I always feel better late at night, and feel pretty awful in the morning. So I make S’s lunch, prepare her clothes, prepare my clothes & any other things I will need in the morning. That allows me a few more minutes sleep, & doesn’t demand much from my foggy mind the next morning.

2. Have a purpose – I found in the early days of having CFS, one of the most soul-destroying aspects of the illness was having no real purpose in the world. My days rolled into one another, I didn’t have any particular role/job to do, I didn’t know when or if I would ever get better so planning for the future seemed a bit futile, and I found it became a very slippery slope toward depression. I wouldn’t say I became clinically depressed at that stage, but there was definitely a low-level depression due to my lack of purpose or contribution in the world, the physical symptoms that made me feel so horrible, and the general lack of understanding or compassion from a lot of people who seemed to think I just lacked motivation or didn’t want to work. All fantastic contributors to feeling miserable.

So finding a purpose, however small it might appear to others, was my key to survival in those most difficult times, and continues to be a driver for me now. Back in the early days I did a correspondence course in freelance photography, which I could do at my own pace, but which made me feel like I was doing something toward my future. I also wrote a lot, which had always been a coping tool for me. I wrote poetry, journal articles & even the occasional freelance journalism piece (having been a journalist for a short time prior to getting ill).

Every afternoon after my second sleep (I had to have 2 back then), I’d put my runners on and just walk out the door – rain, hail or shine; feeling good or feeling lousy. I knew that 20 mins of walking left me feeling better afterwards, so even if I felt horrible, I didn’t allow myself to think. I’d just be on auto-pilot and walk out the door and around the block. I could only do this after my sleep because I had the energy then, but the endorphins or whatever it was always helped the headaches a bit, usually energised me at least for a short time, & it lifted my mood (maybe why I avoided depression at that time – though it got me at later stages).

3. Find things that work and use them – though I have never found one thing that has “cured” the CFS, I have found various treatments, both mainstream & alternative that have helped certain symptoms. Some are easier to implement than others, however, and I sometimes find myself getting lazy and not using some of the tools I know  really work. I suppose it’s like anyone who’s perhaps trying to maintain a fitness program – they know that going to the gym or walking or riding their bike all keep them fit, but some days they just don’t have the motivation or discipline to do any of it.

With me, I know certain breathing techniques can help energise me a bit, & I certainly know gentle yoga is wonderful for me and if I do it regularly – even a little bit – I don’t have to have as many massages and generally don’t get as much back & neck pain. But do I do it as regularly as I could? Not always. Recently I’ve been doing at least 20 minutes 5-6 days a week (which includes my weekly class of 1 1/2 hours), & I have noticed a real difference in having less pain – and I also feel stronger (which might be partly psychological but who cares).

Basically my message is that in your search for a “cure” to this debilitating illness, often we find things that help one symptom. For me it’s been like walking along the beach searching for different shells, picking up the ones I really like and putting them in my bag or leaving the ones behind that I don’t like. If a treatment or technique works, use it. If it doesn’t, don’t. And try not to judge yourself if you find something works that you may have certain opinions about (or other people have opinions about). If a medication from a doctor helps, use it. If a treatment from a Sharman works, go to them. With this illness being such a mixed bag of symptoms, different from one individual to the next, if you find something that works for you celebrate it and use it as part of your arsenal to manage your own personal experience of CFS.

No two people with CFS have exactly the same symptoms, so try not to compare yourself to others. Work out what’s good for you and stay true to yourself. Anything that reduces pain, increases energy, helps indigestion, irritable bowel problems, concentration, memory and that doesn’t have extremely harmful side effects (eg things like illicit drugs, alcohol etc), is a good thing. I’ve found much of living with CFS is about quality of life. If something improves your quality of life, you can afford it, it’s not illegal etc then make sure you use it.

END OF PART 1. PLEASE REFER TO NEXT BLOG POST FOR PART 2.

Keep Smiling

Louise

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5 Responses to “Louise’s Tips For Managing CFS/ME Part 1”

  1. Marti Says:

    This is a wonderful article and should be encouraging to anyone suffering with CFS. I do not have CFS but know people who do and you have described it very accurately. The good thing to know is that there is hope.

    You didn’t make much mention of nutritional approaches. I have been successful in helping clients through that means and would be happy to share with you if you are interested.

  2. uberVU - social comments Says:

    Social comments and analytics for this post…

    This post was mentioned on Twitter by ItsMyLifeDVDs: How do I manage CFS/ME? Check out my blog at http://wp.me/pCuK4-A #cfs #cfs/me…

  3. itsmylifedvds Says:

    Thanks for the great feedback Marti. Considering the blog almost became a thesis I didn’t get time to go into specifics re treatments that have been beneficial to me. Nutritional approaches have definitely assisted me and I continue to eat a modified diet and take various supplements. I am pretty well versed in nutritional treatments as I have certainly seen a lot of natural therapists over time and have also done my own reading on the topic.

    There are so many great natural treatments for CFS symptoms out there. It’s great to hear you’ve had success with your clients. I’m always open to new approaches – though these days I have to know I’m in the right mind-set to try something new (ie be ready to commit the time, money, energy etc). I always give something a good 4-6 months to work too, so I don’t take things on lightly.

    If anyone else asks, I will also suggest they contact you for your suggestions.

    Again, thanks for your feedback. You are actually my first reply to a blog so you brought a big smile to face : )

    Keep smiling

    Louise

  4. Sandy Says:

    Wow Louise,

    I understand the suffering you’ve been through, but with my husbands CFS being as horrible as it is, he cannot do hardly any of the things you mentioned. You see, he has been almost completely and totally bedridden for the last 20 years. He’s doing good if he can just make it to the bathroom without falling on the floor. The only way the doctor’s have been able to help at all is to finally give in and prescribe him Morphine to ease his severe pain from the Fibromyalgia. They’ve also prescribed some meds that help him get a good night’s sleep, but unfortunately in severe cases of CFS, the patient NEVER feels rested. He is ALWAYS completely exhausted, and can barely get to the bathroom. We have to use his wheel chair for his doctor’s appointments. And of course he has all the other symptoms of the disease as well. It used to be that I couldn’t work at all because he was so sick and I had to be here for him. Then later I was able to work for a while, but recently I had to quit my job because he needs my help. I just wish we could get to a specialist, or get a specialist over here to him since he wouldn’t be able to travel very far.

  5. itsmylifedvds Says:

    Hi Sandy

    Sorry about the delayed reply. I’ve been reminded myself of how debilitating the fatigue of CFS can be after contracting a virus over the last 2 weeks that has completely floored me. I used to be this bad all the time, but despite constant tiredness, headaches & other symptoms I function quite highly now – sometimes more out of determination & necessity than anything (a 6 yr old has to be cared for so I do what I have to do!).

    Your husband’s CFS is obviously very severe, and I feel very much for both of you having to live with that degree of CFS. Lately it doesn’t matter how much I sleep I never feel rested, but I really think I have an extra virus on top of the CFS. My usual days are not this bad, though 8-10 hours sleep never leaves me feeling refreshed. It just brings me back to a certain level of energy that I’ve got used to working with.

    It is important to note that there are many different levels of CFS, which is the point you were making. I have got through my worst period (I hope), but the fatigue and pain etc I function with every day would have a normal person home on sick leave I’m sure. For me it’s been a matter of adjusting & working with what energy I have – & giving in to the fatigue when I’m having a bad day.

    The tips I gave re managing CFS are for people who have at least some energy. Though, I still believe that even if people like your husband can find some small sense of purpose in their day, it is still very important to their sense of self.

    If nothing else the severity of your husband’s condition has highlighted to anyone reading this post that there are people suffering THAT badly from CFS out there. So please pass onto him that by you sharing his situation with me & others, he has contributed to the world today – and for many days to come.

    Thank you so much.

    All the best. I will keep in contact via email

    Louise

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