Coping strategies

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Whilst wrestling with one of many relapses a few months ago, I knew I had to change my way of thinking & also my way of interpreting how I felt to others as I was fed up of constantly moaning & felt sure people were fed up hearing it too. Instead of saying the usual "like death warmed up," "absolutely crap," "I'm really struggling" "completely exhausted" "zapped" "can't walk, can't talk" etc... or i tried to explain a few of the symptoms. I got frustrated & fed up hearing myself moaning & started saying things like “I'm running low on fuel” or “the tank is empty” or “the Brakes are on & I’m sitting at the red light” “not quite firing on all cylinders”... It got me thinking - our bodies are rather like the engine of a car...

It kind of put a lighter feel on it for me (& others I think) & maybe added a little touch of humour. Although having cfs/me is no fun matter - humour is something we can all lack at times. It helped to lessen the stress & anxiety - for me anyway.

I used to drive an engine similar to that of a Ferrari but I drove it way to hard & fast till eventually it hit a brick wall & crashed, now the engine is more like that of a Nissan micra with a dodgy battery & a very small leaky fuel tank.

I came up with the traffic lights system to help listen to our engines (our bodies) more effectively.

Red light (Stop!)

This is when you’ve pushed way too hard & bang there’s the red light right in front of you. Time to apply the brakes fast & screech to a holt! Who knows how long you'll be sitting at the red light, so may aswell take your feet off the pedals, put the hand brake on & just relax & wait. It's no good sitting at the red light revving the engine when your brakes are on. (unessasarily beating your self up, over thinking & resistance, trying to fight it) it literally gets you nowhere, only a risk of the engine seizing up. If we try to drive off while the red light is on we risk a big crash, then the engine would be out of use for a whole lot longer. It may take a while for the engine to cool down as it’s been overheating, so no pressure - or you'll blow a gasket! Allow it to cool.

( I see this as a pit stop for the mind, body & soul.)

Amber light (the warning light) this is when you know you should be pulling into the pit stop, so when the engines not performing at its usual, the battery is running low & your nearly out of fuel, it’s time to take note of the amber light, see the warning signs & slow down or pull in! At times you may feel that you need to set off in amber as the green light never seems to be available or working, but you will have to go very careful when setting off on amber as the red will flash at any time - you may not be charged enough. You can try sneaking off if you feel the green light is coming up but be very weary & watch out for the signs.

Green light (you’re ready to go) once you’re sure the batteries been charged enough & you have enough fuel for the journey. Don’t be too hasty - it’s not a race . To begin with you may be looking for the warning signs - so make sure the foots not to the floor at 100 mph or you’ll brake down or hit that brick wall again. So just casually cruising along in 1st gear, noticing the beauty on your way, respecting this beautiful retuned engine. If the engines feeling good you may change up into 2nd, or 3rd gear but watch your speed now, as there’s a speed limit! If your speeding you won’t have time to see a red light ahead & could crash into it. If you take it easy the next set of lights could also be on green or on amber so you have time to adjust. It may take a little longer to get there but you’ve enjoyed the journey & got there in one piece, no sign of any crashes or red traffic lights or jams & the engine is still in fairly good condition. (Less likely of a physical crash, a lot calmer, less stress & a lot less anxiety too)

Remember:-

Just because you may have sat at a red light last time or times before for a day, a week, a month or longer, it does not mean that this red light is the same, so sit back chill & relax, respect the signs & wait while the battery charges.

Living with a condition like cfs/me or similar is like going from one set of traffic lights to the next, sometimes in quite close proximity but as long as we stick to the rules & listen to our engines the traffic lights could be a longer distance apart & we get to enjoy the journey a little more. & you never know we may well begin to experience driving along that motorway once again!

Basically.... Listen to your engine!

we can't always change the way things are but we can change the way we react to them. Our reaction IS our choice & makes a massive difference & can in turn make the journey a little more tolerable.

If like me you see doing nothing as giving up, it could serve you well to change your thoughts - doing nothing can be hard for someone who has always been a doer & a go getter in life, but remember - for now doing nothing is everything to gaining more. Take the time to nurture yourself to improve, otherwise It’s much like saying you don’t have time to stop for petrol as your too busy driving! Eventually it will catch up with you. Taking that much needed pit stop when it’s needed will allow the engine to cool down. (Helping to turn off the fight or flight mode) It is the most important thing you can do & will improve the overall outcome.

Putting up a fight, resentment & resistance is something I’ve battled with every day for over 10 years. This theory has helped me immensely with patience & acceptance - which I always classed as giving up before but now I realise it's about being in the neutral position for as long as it takes for the lights to change before gently pulling off in 1 st gear. Enjoy your journey & good look with your new outlook.

I hope this helps you as much as it has helped me.

I have a few ideas on methods to use whilst your in the pit stop - which I will post in a few days.

Petra

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  • Posted

    I also came up with a traffic light analogy a few years ago. It's been very helpful in interpreting my energy levels. The way I thought about it was that whenever I went anywhere or did anything I would gauge how I was doing with the traffic light system. If I felt good I was in the green light zone and that meant keep proceeding. If I started to feel a bit tired, I was then in the yellow light zone and that meant proceed with caution and begin to make my way home to get rest. The idea was to avoid the red light zone which surely meant there would be unwelcomed consequences.

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  • Posted

    I'm currently sitting at the red light after overdoing it for weeks and it really cheered me up reading this! It made me laugh but you also make really good points in it. Normally as soon as I've recharged my batteries I'm off again at 100 miles an hour with foot the floor so it's no wonder my body is worn out. I've decided to use this month to have some 'me time' to recover and have started listening to guided relaxations again which I haven't done for ages. I used to feel guilty doing this as I felt like I was sitting doing nothing but I now think that instead of doing nothing I am doing something - I'm relaxing which is a good thing for my body. Thanks for making me smile!!!

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  • Posted

    Thank you. This is one of the few really helpful things I have read. Now I've had the illness 25 years and been diagnosed 17 years. I've had the experience of a graduated decline - relapses, punctuating like an uneven staircase. Each relapse I have emerged lower. I currently am in my third relapse in 6 years.

    In your experience how does one recognize a red light? A new symptom? A new vulnerability to a previously undemanding activity? The red light is a prediction, so recognition is essential.

    Therefore most of all I would like to know how to avoid the situation where in years to come I look back and say "that was a red-light, but I didn't recognize it as such." As I look back since diagnosis there have been such moments. In this third relapse in a row I haven't stabilized. Another could make me bed-ridden 24 / 7 and in need of social care.

    Your model implies there is a way to see in advance and make adjustments. In my earlier experience I have made adjustments and relapse has come to a halt. But in the last few years life-events (divorce, bereavement, children leaving etc) have meant cut backs have not proved sufficient or deep enough to bring the vehicle to the required standstill and restart. Is that the illness, or is it me? Is M.E. always subject to a rational measured response or does it have a will of its own. Is it ever possible to truly know how deep to cut?

    Philip

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    • Posted

      Good question Phillip! I may not have a conclusive answer but I can share with you my experience in what I feel when a relapse is coming on. As you know we can all have different symptoms so this may not be the same for you or everyone.

      For me the pins & needles /prickly feeling I have all over gets a lot worse & body feels heavy (like wading through treacle) this is often the 1st warning, my throat feels swollen like it’s closing up & feels a strain to talk & brain fog gets worse... if I cannot get enough rest to lessen these symptoms & push through, the malaise comes on strong. This is when I know I’m in trouble & a relapse is imminent. Oh and the overwhelming, debilitating fatigue. How could i forget?! I guess as it's always there it becomes the norm.

      Sometimes it can take a few days of complete rest but at worst it can be months. I tend to keep a diary & try to keep the same (ish) routine. Anything different added in the mix can throw me off course. I do feel stress can have a big impact - I noticed recently - I could actually feel the stress hormone coursing through my body, then all the symptoms started. I try not to get too much in my head with it all & try to avoid negativity where I can (not always possible I know, as it is life) but I try to keep grounded & present & observe my reaction. As usually it’s not what happens that is the problem but the reaction causing the issue. I do feel cfs/me can have a mind of its own at times & sometimes can give you a false sense of security but I have learnt (only recently) never to underestimate it & give it some respect. After all our bodies are trying to communicate with us so it’s best we listen. When our cars go wrong we don’t continue to drive on, we take it to the garage to get mended. Unfortunately in our case the medical profession don’t know how to fix us so we have to become our own scientist.

      I’m sorry to hear you are currently in a relapse. I hope you’re not in the pit stop for too long. How are you with patients & acceptance? Is it still something you struggle with after 25 years?

      It took me many months of writing notes & fine tuning to get the right wording for this post. I’m pleased you found it helpful 😁

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    • Posted

      Phillip,

      I can also tell you that what has helped me has been a wrist heart rate monitor. CFS patients have an anaerobic threshold of about 60 - 70 percent of their maximum age predicted heart rate. That means for me I should keep my heart rate below 96 - 104 or so. At first it's amazing how easy it is to go over it but the more diligent I was about keeping it within that range the more I was able to start doing without getting tired. I just need to do things more slowly and consciously. I think many of us do things in a hurried way. For instance, my thinking was that if I had any energy and I wanted to get something done I would try to do it quickly before my energy would "run out." With the heart rate monitor I learned that that was actually causing many of my problems. Now I do things more slowly but my energy will hold out a lot longer. There's a lot of good information on the web about heart rate monitoring with CFS. It has to be a continuous read monitor. Still nothing beats becoming consciously aware of your body's signals. My monitor isn't always 100 percent accurate but I'm more aware now of impending warning signals (yellow lights).

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    • Posted

      Hi Dianna,

      This is great advice, thank you! I will look into this. Do you wear it at night time too or just during the day?

      I can totally relate to trying to do things quickly so as not to run out of energy. I have consciously tried to slow down but the wrist monitor would give a more accurate idea of what’s going on. I have a finger monitor that records heart & oxygen levels & often use it when I feel my heart pumping fast. It’s usually flashing & beeping at me... eeek.

      Glad to hear you use the traffic light theory too. Great minds think alike 😃

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    • Posted

      Yes, the wrist monitor is a tangible way to create a guideline. I wear it during the day only. Tho some days I'll go without it and I notice that when I don't have it on for a while I start to slowly slip back into "speed up" mode. If you do it, it takes a while to get used to it but after awhile when you start seeing results, it's worth it. Tho, I had to learn to not be too "rigid" about it.

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    • Posted

      Hi...so what you're saying is (I'm not science trained) that keeping the heart rate below the threshold where anaerobic respiration kicks in is about the best warning sign there is?

      Thanks...I have a couple of monitors. How do I know/discover when I've overstepped into anaerobic territory?

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    • Posted

      You see, I don't get breathless until way high in the heart rate, but I still get lactic acid/cramp in the muscles very readily: is that the illness...? But cramp is not a predictor...could you without using a link point me to good information on the web you mentioned.

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    • Posted

      Yes it sounds like just the thing to help slow down & pace accordingly. Would you mind private massaging me the details of one you use please? My only concern would be how it runs ie Bluetooth to phone? I am electro magnetic stress sensitive & try to avoid it. I get pins & needles in my fingers & hand when texting on my phone for too long, so wondering if it would be a little like having your phone on your wrist all day? Also how do you know what range your heart rate has to be in. It sounded a little confusing (or maybe it’s the brain fog at the minute found it hard to understand?!)

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    • Posted

      Yes, the maximum heart rate for a "normal" person is 220 minus your age. If you multiply the result by .6 you get the 60% number. If you multiply it by .7 you get the 70% number. So for me, I'm 62 years old so 220 minus 62 equals 158. 158 x .6 equals 94 and 158 x .7 equals 110. So my threshold is between 94 and 110. I can usually feel it when it gets to about 96 or so and I check my monitor to verify. All I typically have to do is stop, take a few deep breaths and it comes down. Some people have to sit or lay down.

      My wrist monitor is a Mio Alpha. It can be used without any kind of device. As I said, it's not always accurate, and it can wildly inaccurate, but it's more accurate than not. Now some people say that the formula should be between 50 and 60 percent which made me feel like an absolute ZOMBIE. And I felt like I was really losing benefit of exercising to the degree that I needed to. I do better with 60 -70 but I try to keep my heart rate below 100.

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    • Posted

      Yes, the maximum heart rate for a "normal" person is 220 minus your age. If you multiply the result by .6 you get the 60% number. If you multiply it by .7 you get the 70% number. So for me, I'm 62 years old so 220 minus 62 equals 158. 158 x .6 equals 94 and 158 x .7 equals 110. So my threshold is between 94 and 110. I can usually feel it when it gets to about 96 or so and I check my monitor to verify. All I typically have to do is stop, take a few deep breaths and it comes down. Some people have to sit or lay down.

      My wrist monitor is a Mio Alpha. It can be used without any kind of device. As I said, it's not always accurate, and it can wildly inaccurate, but it's more accurate than not. Now some people say that the formula should be between 50 and 60 percent which made me feel like an absolute ZOMBIE. And I felt like I was really losing benefit of exercising to the degree that I needed to. I do better with 60 -70 but I try to keep my heart rate below 100.

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