I’m just waiting on formal diagnosis from the ME doctor but had phone call last week from the ME nurse. He said one of the only way of managing the condition is to master pacing. I am a boom & bust person and it’s killing me. Has anyone got any tips/advice?
I have really severe guilt as for the past 18 months I haven’t worked and this is the first time in 35 years. I feel I have to do loads in the house to compensate for not bringing in a salary. The pressure is only from me, my husband is amazing. I don’t know where to turn for help? Many thanks 😊
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Lexilou70
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Hi Lexilou. The ME nurse is right. The only way to manage ME is by pacing yourself. There's a very good book - Fighting Fatigue - written by the Leeds CFS/ME service. It's all about how to pace yourself effectively. I understand the guilt . Seeing family busy and tired I sometimes push myself to do things I can't do but it never ends well. Pacing is the only way to go. Don't beat yourself up. You didn't choose to be unwell. All the best.
For the guilt you could try counselling. It helped me a lot to accept my new state and the fact that I cannot do as much as I want to. Also consider that continuous boom and bust is likely to worsen your ME, potentially permanently.
Hi Lexilou, I’m sorry to hear how you’re feeling. I can sympathise with the guilty feelings of not being able to live life like everyone else is. It took me a few years to accept that I can’t function like I used to - and to be honest I’m probably still not fully accepting of it now. Ask your clinician if they have a CFS team at a local hospital who can provide support and guidance on pacing and managing the condition. CBT may help too. After much internal wrangling I went part time a year ago and it has made a big difference for me. I still struggle a lot but things aren’t as bad as they used to be. Keeping a positive mindset can be challenging with a chronic condition but I find it helps me to keep going. And taking things one day at a time. Hope this has helped to let you know you’re not alone.
Hi Lexi, gosh you sound like me. All the replies you've received are spot on and I am currently reading the Fighting fatigue book. I do already know the pacing etc as have had CFS for over 15 years had had been managing it really well after help from my local CFS centre. However i have had a bad relapse and am having trouble with pacing etc so just shot request off to my GP to send me back to CFS centre. I managed to make my life so much better by Pacing, CBT etc before and WILL do it again. So, keep activity sleep diaries etc then you can start your pacing, DONT boom and bust and yes i know it's so, so difficult, try and accept SOME of the changes to your life, I'm still trying. Ask and accept help from others, not easily done I know and above all DONT feel guilty you aren't lazy, you didn't asl for this etc etc.
Hiya! Thanks ever so much for your lovely reply. It's made me feel better about myself & realise I'm not alone! I've also found a wonderful booklet about pacing from Action for ME. It's 60 pages long but it's got so much stuff in there that I didn't know!I'm so sorry to hear you've had a bad relapse and I hope you find some relief soon.
I think I'm finally realising the reality and enormity of it all. 😔
Hi, I really rate pacing it has helped me a lot but I am also useless at it. I try to stay withoin my energy envelope but still boom and bust occasionally. I use a timer when I want to concentrate on my pacing. I have a small one that I hang round my neck so I can't hide from it! If I am recovering from a crash I set it for 10 minutes, in this 10 minutes I am up and around and then I rest for an hour, repeat. Then slowly, very slowly, I increase the amount of up time. I'm not sure how much you know about pacing but I like this explanation cfsselfhelp.org/pacing-tuto... . It took me years to become comfortable with my limitations. I eventually stopped buying in to a "normal" that is set by people with different energy capabilities than me. It was hard though. The only other piece of advice I have is to be aware that the fatigue may become delayed. My body today reflects what I was doing 3 days ago. This "lag" between activity and the impact is common and the time delay seems to vary from person to person. It does make figuring out what your energy envelope actually is really tricky. Good luck Lexilou.
HiThanks for this fab reply. I think a timer would really help. My problem is that I struggle to say no especially to my stepdaughter and her 2 young boys. I call them my grandsons and I adore them. When I learn to say no this will really help. I'll have a look at the explanation, thank you. I also don't know how to rest without doing something like embroidery without sleeping. I get an overwhelming need to sleep but everything says don't sleep in the day. It's too confusing 😕
I'll get with practice! Thanks a million and I hope that you are keeping well 😘
I went through, and still go through, everything you mention. I find the timer is my supporter, when it goes off it helps me introduce "oh my time is up" into the conversation. With some people this really works with other (mum and SiL I am talking about you) it makes not the slightest difference. You might like to think of pacing as a 3 month treatment. That way you could say "for the next 3 months I will not be able to help becuase I have to stay off my feet for the majority of the day". ??? Just a thought. If you catch this early you have a much better chance of full recovery so however hard it seems to stop "doing" it is so important for your long term health. I think embroidery is a great idea. I do a lot of craft work to keep my butt on the settee. I know how much of my energy each one uses and I would put embroidery as low energy. As long as it is not too creative, creativity makes my brain work and so ups the amount of energy I use. My library does online audio books which is fantastic so I listen to a lot of those, on the settee eyes shut, feet up. I find the feet up bit is important. I do nap in the day when I need to. Some say not to but at my worst I could sleep 21 hours each day no problem. If I don't nap when I need to then I am too wired and tired to get to sleep at night. I think if the doctors can't tell us what has happened, if they don't know what has gone wrong with our bodies, then they can't be really certain about what we should or shouldn't do. It is also clear that we are all different and what works for one doesn't always work for another. Having said that pacing is recommended by something like 90% of patients so I do think that is a given. Can you tell I have a lot to say about this illness! Thank goodness for Long Covid we might finally get some answers about post viral fatigue conditions. Keep in touch, let me know how you are progressing. I am always intersted in what works for others.
Hi. Thanks for your wonderful reply again. You’re so helpful & informative 😊 I’ve felt alone & isolated even though I have an amazing hubby. Unless you suffer from any of these awful conditions (I have fibro too), you can’t understand or empathise. I need to get a grip and deal with it 😔 I’ve been trying to do reading/research but everything says the same thing. It still thought about as the lazy disease & needs to be taken more seriously by doctors. More research needs to be done! You look after yourself and I’ll keep in touch. Thanks again lovely, I really do appreciate your reply x
Hi Calliepet, I just wanted to say thanks for your good advice and practical ideas, really helpful. Although some of the CBT and pacing advice from the hospital was useful, I don’t think anyone can really give advice on how to manage the condition unless they suffer with it. We did a pacing diary with the hospital team but it quickly fell by the wayside. I will try the timer trick and see if that works better for me.
Thanks PortiaRose. I agree, until you experience it I don't think anyone can really understand what it is like. It is hard emotionally as well as physically. I regulalry forget how bad it can be until I "crash" and then "oh I remember this, I really don't want to be here". Did the hospital mention you have to be aware of physical, mental and emotional energy use? I think they are up to speed with this idea now but they weren't when I started. I was going to post a couple of links to 10 minute You Tube guided meditations that I find helpful when I am struggling to rest let me know if you are interested and I will link you to them.
Thanks Calliepet. I do use Headspace to help me sleep which has meditations on it but I must admit I rarely use them. It’s a good idea to try them when I’m feeling frustrated and restless. They did talk about managing your emotional and mental exertions at the clinic but I just find it so hard to manage them sometimes. My desire to just get on as normal takes over, but then I pay the price. I often say that managing the condition is like having another job!
My daughter also has ME. Today she got up early and is now hoovering (something she rarely does) I asked if she thought she was "hyper". (That is what we call it when we have pushed too far and are running on adrenaline rather than proper energy.) "No", she said, "I don't think so". Less than a minute later. "You know I think you are right, I am going to bed to keep myself out of trouble." What other illness is like that? Some days managing to NOT do things is just as much of a struggle.
I’m sorry to hear your daughter is affected too. I think we can probably all relate to that, going great guns on the housework when we feel we have just a bit more energy, only to end up feeling dreadful after. I think it’s a very difficult condition to manage, and to explain to people how it affects you - not just day to day but hour to hour.
I subscribe to the ME Association and they send out magazines every few months, although they’re quite technical and scientific in nature so I never get round to reading them all. But they were trying to get improvements implemented by the medical profession on how to diagnose and treat the condition, so hopefully things may get better in time. Although it may also depend on which NHS Trust you live under as to what you can access. If I’m honest I’ve found this site to provide the most useful info recently on how to manage. My issue with the hospital teams advice was that the clinicians were advising best practice from a book essentially, and in reality we’re all suffering differently and living lives that can’t easily be managed with pacing/diaries.
Hi klr31, I can completely understand that. It just feels relentless doesn’t it, managing the symptoms every day, trying to monitor what you’re doing - not do too much but trying to have some sort of life… really is hard trying to stay positive some days. Just living in hope something changes one day.
I don't recommend the Fighting Fatigue book nor did I gain anything from attending the ME / CFS Service in Leeds.
There is perhaps at best 10% of the book that might be useful, if you want to plan your week or be prepared for discussions about your illness, but the science is really lacking and some of the chapters give advice that has been shown to be harmful to people with ME, such as on 'grading' which is to increase activity over time and was the subject of the flawed Pace Trial, and advice to eat a high carbohydrate diet, with snacking (the deeply flawed Eat Well guidance that was just a cut and paste).
To learn more about this flawed dietary advice, you can look at the work by Nina Teicholz author of the Big Fat Surprise who blew the lid on the failed hypothesis that we should all be eating a high carb low fat diet to avoid heart disease (the American Heart Association has changed its advice yet the NHS soldiers on). It's also worth watching the lectures from Robert Lustig on YouTube on diet, the dangers of sugar, sugar substitutes and processed food - his focus is how people are getting sick in developed countries, the symptoms he discribes include those with ME with gut dysfunction and oxidative stress. He also often discusses fasting both as a natural process and how its very difficult to do when eating the North American diet. If you're doubtful about fasting take a look at autophagy, which is how the body cleanses itself of broken and damaged cells..
Lastly, I'm concerned that cognitive behaviourial therapy CBT which is also covered in the book, can become a form of abuse towards people with ME, as they can descend into a negative spiral having allowed themselves to be convinced that their illness is driven by thoughts and feelings - the people who promote this approach are often heavily invested in it themselves along with other unproven (or proven statistically to be ineffective) therapies.
If I could give advice to myself at the point I was diagnosed several years ago, it would honestly be to start a ketogenic diet as soon as possible as an intervention and, once started and keto adapted, begin intermittent fasting. I currently have a17-18 hour fast most days where my first meal is 10-11 am and my last is finished by 5pm. I do now eat carbs, but only in small amounts and ideally in conjunction with a physical activity.
I honestly believe that all the science points to making these changes to fix your dysfunctional immune system, dysfunctional gut, and improve your mitochondria. I also take supplements that athletes take to improve mitochondria function and muscle growth, e.g. Ubiquinol, creatine, beta analine. Once stabilised do some regular strength training (but don't aim to set stretching goals and focus on being consistent without triggering an immune system response or days in bed).
I'm mentally struggling, but I'm physically stronger than I've been in years and I'm consoliderably more resilient to infections such as cold and flu. I have hope, but I have to moderate my anger towards the poor advice I was given and the lack of competence of those considered experts in the field who have in my opinion, had more failures than successes and contributed to the widespread view that ME is best treated with talking therapies.
Kindness to self. Compassion to self. Illness changes everything. Treat yourself the way you’d treat your best friend. That’s what I have learned these last 3 years. When I push hard like I used to pre-illness, it causes more symptoms, which causes family to pick up the pieces. So it’s hardest on them for me to avoid pacing. That’s what is the deal breaker for me. Causing more work for them. Find ways to bring someone else a smile even in the midst of the illness, not as a burden to yourself, but because that is your new contribution and purpose. Everyone needs purpose, and salary isn’t it anymore. Gratitude for the things that do work. I have Long COVID & have improved, but still have symptoms when I push too hard. If your husband is amazing, let him know. Your gratitude will give him strength also. It’s difficult because this is counter cultural. Some others will judge you, I’m sad to say. Trust yourself. So you need a strong support network. Build your network & cherish it. Much love.
Oh my....🤗 What a beautifully written, heartfelt reply 😔 It makes so much sense & really turns it round. It made me cry but in a supportive kind of way. Thank you so much for taking the time to reply. I hope are ok & continue to improve & thank you for being such a wise 🦉 x
Hi. That's good that you will get a diagnosis. The most important thing is to accept that you have this condition and adjust your life accordingly which I find really difficult. I have found Pacing really dificult but you can get lots of good advice on ActionforMe and other ME websites. Raelan Adel has a youtube channel which is excellent. Her book tells of her journey with ME and it has a chapter on Pacing. Hope that is helpful.
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