Not sure if I should say this or not, but I get really frustrated when people say, just pick up the phone and call a friend – seriously, what friend??? I’m an introvert who has always made friends through work or sport, neither of which I can do any more. I am trying to do a few things that put me in contact with people (eg workshops at my local library), but then I have to deal with how to tell people I have had CFS/FM for over 10 years and despite looking fine, I therefore have limitations on what I can do. Although I’ve just hit age 50, until recently I was attending the local uni doing biomedical science – yes, for fun, I enjoy learning and I’m smart – I can’t cope with the travelling and deadlines now, but I’m doing free online MOOCs instead now to feed my need to learn. Then to top it all off, my primary support which came from my partner and her kids has gone since we broke up earlier this year – and yes, I said partner/her which also means I’m gay, yet another minority group – and now I get to do try and do all the house/garden, etc, chores by myself. I feel like I’ve won the minority jackpot – 50+, chronically ill, intelligent, gay and (unhappily) single. To me, making/being friends is about what I can “offer” someone of value that makes me worth their time and just at the moment I feel I have very little to offer.

Thank you for all your hard work and for sharing with us Dan. It is so helpful to get encouragement from someone occasionally.

My biggest frustration is trying to do everything right. (Good food, gentle stretching and balanced activities, meditation, positive attitude… ect.) But see no results, or only short term temporary results. But I keep going, because I know it will take time for my body to heal itself.

Then I hear my hubby say “he is disappointed that only a few hours of ‘slowly’ walking around, could put me in bed for 2 days.” And my doctor (who I thought had some understanding) tells me I need to start doing at least 20min of cardio a day. I want to tell her..”OK, I’ll walk up and down the stairs twice. That should about do it.”

People see a few short minutes out of my life and think everything is great. What they don’t see is that it took a full day of planning and resting to be able to go out into the world and that I will need to spend another full day recuperating from the energy I overextended on my outing.

I also get frustrated that in my mind, I still believe I can do all the things I used to be able to do. So when I plan my day, I over-reach my capabilities by 300%. Then when I start moving, I can barley even get one thing done by myself.

I guess that I have a lot of pent up frustrations. Must be why I prefer my own company now a days, – no one around to explain myself to,

I understand that at a certain point you can push yourself to do things out of frustration or determination to have something go right in your life. What happens when you have pushed yourself from not being able to work to working 6 days a week (56 hours) and are going back to school in a few weeks. I was almost bed ridden for a year, and to be where I am now did not seem like a possibility. I have a small circle of very close friends who are an amazing support system. My frustration stems from my family, most specifically my sister who seems to lack any kind of compassion. My huge accomplishment and life changing push I made is STILL not good enough for her. After a certain point of pushing yourself it doesn’t matter what determination or frustration you have because we all have a chronic illness that does limit what we can do. I can’t change that, yet she tells me that my best is not good enough for her. How do you use that frustration to help you especially when you already are pushing so hard that you feel as though you are teetering on the fence of bad flare up every day?

Hi Dan
Thanks for an encouraging video. You’re right about using that frustration, although it’s very difficult at first, because – and certainly for me – you feel so stupid and useless. It’s at that point that you feel that you’ll never see the wood for the trees again. It’s like you’re a thousand piece puzzle that’s fallen to pieces, and the pieces don’t seem to fit any more. It’s really a re-assembling of yourself by getting to know yourself all over again. And the frustrating thing is that you have to take baby steps in order to put the pieces back together. The most difficult part for me is looking at myself to see what I do and how it affects me – and that is only achieved by slowing your life right down. And that is frustrating too. It’s takes time to learn how to do this, but it does work. It’s helped me make one or two very small improvements. Despite this I still get my down days (I have CFS & Fibro) where I’m exhausted and hurt all over, I can’t think straight etc. But practice means that after a few days I’m able to look and see that a change needs to be made, or I’ve not done something right.

It’s absolutely maddening when I hear the “professionals” refer to this illness as psychological. If these pros could live just one week in our bodies, this ridiculous hypothesis would be relegated to just a quaint notion of the Dark Ages of medicine.

I have lived with CFSME for over 10 yrs of active infection. I have tried numerous doctors, treatments, vitamins, medicines, etc., all to limited or no success. Recently I have turned to very healthy, or “clean” eating which basically calls for no processed foods & lots of fruits & veg. I also determined that for me, exercise at whatever level I can do is important. I am basically doing everything “right” for my health, and yet here I am, having a flare where my exhaustion knows no relief. Sleep is non-restorative & I feel fatigued at the cellular level.

My point is I’m not wallowing in my illness. I’m not courting it and I’m doing everything I can to remain healthy. I’m taking my meds, I’m living in a place of “yes”, being positive, forgiving myself & others, getting lots of rest, staying stress-free, I know that my nutrition & movement are top-notch, yet I’m still here sick in bed. If I did not have a real, true disease, I would be the picture of health! Any healthy person who followed my routine would be glowing with health and climbing mountains, conquering their dreams!

Frustrated? You bet. But I don’t revel in it. I accept that this is my lot. I will continue to seek healing from any viable source. I will continue to hope. But I will also not deny that my illness is 100% real and will, like a scorned lover, always return to exact its reckoning. And I agree wholeheartedly that each of us must listen to our individual bodies for the way we need to live.

Great Vlog with some very interesting points raised. I always struggle with the ideas of hope and acceptance, I’m a very positive person so when I mention hope I mean hope of recovery, not hope in general. Is acceptance of your illnesss giving up hope of recovery? The more I accept the illness and adjust my life to same, the more ‘ok’ I become with being ill and try to find a balance, the doubt seeps in that I am not trying hard enough to get better. Is trying to find a baseline of energy to start building on the best way forward? Any time I feel I can start building on it ,seems to be the wrong time and I set off a flare of fall into a relaspe (where I am currently). Absolutely the thought of recovery is what keeps us going but at the same time you can push yourself too much trying all these different things and methods to recover. Also there is so much advice and so many people almost touting ‘cures’ that you can spend so much time crossing these off as you try them that you lose sight of your path. those ‘failures’ lead to frustration but this journey is not going to happen overnight. What you say about instinct and trusting your instinct is so so true I decided when I turned 40, 3 months ago that I was going to start listening to myself more. Since then I have freed myself from the guilt I felt at not being who I was before. I accepted myself the new version (40.0 I call it) It has allowed me to distance myself from toxic relationships that before I was so emotionally entwined in I felt trapped. I feel I no longer have to explain myself to people that if they don’t understand it’s not my job to make them do so, I just accept them for where they are and let anything ‘hurtful’ wash off me. I now concentrate on myself and have never looked after myself better, I rest when I need to, exercise based on what I feel able to whether it’s walking outside or yoga/stretching on my bed, my diet is impeccable, including treats, I have learned to say NO and by doing so people around me have begun to understand more. When I used to say yes and turn up for everything, trying to be all things to all people, they saw me looking ‘well’ because I washed and put some make up on to make myself feel better and then they doubted; but now they are starting to understand much better. Only you can know what is best for you, by all means take and read advice but only choose what suits you and keep smiling, it takes rain and sun to make a rainbow. Thanks Dan

This hit home for me, describes how my life was before I healed with a gluten free diet 2 1/2 years ago, after suffering with fibro and CFS for over 10 years. It is most frustrating, embarassing and worrisome when you’re in so much pain that your life comes to a complete stop, and you can’t keep up with your child, have to stop gardening when you enjoy it immensely, and avoid social functions with friends and family because its too uncomfortable to stand or sit too long, and you find yourself too embarrassed to deal with the looks and unhelpful advise and opinions. Many don’t believe fibro is real and think a person is faking it when one day they need a cane and anothe day they don’t. I remember well the looks when I first got my disabled parking permit, my cane, then a walker andwhen going out for the day with a wheelchair, because it was so painful to walk or stand and there aren’t always benches when you need them.

I thank heaven everyday that my husband pushed me to try the GF diet, everytime I walk up and down the stairs pain free, walk to the park without needing a cane, get up from a month or long drive and my joints and muscles are relaxed and not fighting me. I hope more and more people find healing ways, we all deserve our life back.