“How to Cope with CFS Relapse” – this have to be the number 1 topic I’m asked about by my mentoring clients and via email.
Ooooh wow. Relapses, ey?! Don’t you just love ‘em. Just when you think you’re on the right track, you wake up one morning and you’re right back where you started…and you feel hurt, ashamed, disappointed and terrified.
‘One step forward, two steps back’ image taken from here
My Experience of Relapses
I’ve had a number of relapses during my time. Many of them were during times when I was actually managing to work full-time, but I definitely still wasn’t well. I ignored my body completely and ended up taking not just one day off with a cold, like most people, but at least a week. I knew if I woke up on a Monday morning, felt disgusting and phoned in sick, I knew without a doubt that I’d probably be off for a week. With hindsight, once I told myself this a few times, it was almost like I was setting myself up to take the week off, but I knew my body was weak and a relapse was what I needed for my body to tell me to slow down. I felt incredibly guilty about letting my colleagues and students down. I think this guilt most definitely prolonged my illness- I used to think so negatively and badly about myself.
Whether you’re working or not, you know what it feels like when it seems as though everyone in the world is fit and well and can hold down a 9-5, 5 days a week job without batting an eyelid. When I was at work, I pushed myself to be as good as, if not better than my colleagues, and never gave myself any slack or down time. I didn’t eat properly, didn’t exercise and self-care most definitely came last, so in a way, with all the stress and pressure I was putting on myself, it’s no wonder I relapsed.
Tips for CFS/M.E. Relapses
If you’re like me, relapses came to be unwelcome, but unfortunately very familiar friends. Here are some tips to carry you through these time when it feels like you’re back to square one again:
- Know that this relapse is just a small set back on your road to healing and it does not mean that will never recover or are incapable of recovery. Brush it off and focus on the journey ahead.
- Each relapse in the greater scheme of things is there to teach you something. Think back- how did you feel just before your relapse? (My throat and throat were incredibly painful just before mine, and I used to slur my words) Where you really looking after yourself? Did you find yourself getting stressed? How could you change this for next time?
- If you can, write down how you’re feeling just before relapses and your symptoms in a journal. You can then refer back to it if it happens again, so you know what your triggers are. Try and find ways to reduce or stop these triggers altogether- then you’ll really be able to get a handle on what’s going on and be able to prevent or reduce possible relapses in the future.
- As tempting as it is, do not wallow and give yourself a hard time. This is the worst thing you can do. Pretty soon, you’re swimming in negativity and wake up the next morning feeling worse (it took me ages to really realise that the more negative and ‘in my head’ I was, the worse my symptoms were, the more ‘brain-foggy’ I was and the longer my relapse lasted for – coincidence?!)
- As soon as you’ve realised you’ve relapsed, do something lovely just for you- be incredibly kind to yourself, just as you would a family member or a friend. Negativity and anger at yourself is just wasted energy which can be much better spent on relaxing into recovery and for a better tomorrow.
If you’re going through a relapse just now, please know that you are not alone. We are here with you and we know what you’re going through. Think about the big picture and your journey as a whole- of course there will be set backs, but it makes the journey all the more interesting and enriching.
Love and the big picture,
Katie xxx
This was just what I needed. After working for 6 days in a row (against better judgement), I crashed and even though I hardly ever call in sick, I’m home now for the second day. Feeling guilty of course for not being at work, at beating my self up for not being wiser.
Aww my darling, so sorry to hear this- sending lots of love your way. I know it’s incredibly difficult, but try not to feel guilty if you can- guilt doesn’t usually do anything for us, apart from make us feel worse about everything! Channel this energy into getting better and doing something really lovely for yourself (this post might help).
Take care of yourself my love.
Katie xx
I do, do, do, DO and then overdo without even recognizing that in myself (until I’m kicked down and in bed for a couple days or weeks). When I look at the last 10 years of my life I see a crazy pattern of physical/spiritual ups and downs. But the one constant is that I just overdo it…plain and simple.
I really like your advice at looking what leads up to this point. I have convinced myself that my symptoms have just ‘come out of nowhere’…when the truth is that it’s a predictable pattern of overdoing it. I need to examine that overachieving part of myself more deeply…and change my behaviours to support better health.
Thank you for your words and support of hope. I just found your site today and feel more hopeful about my own recovery.
H Sascha- thank you so, so much for your comment. Wow- I hear you! I used to push and push myself so much and at the time I was completely in denial as to what I was doing, thinking that ‘just getting on with things’ would help. Just recognising that you have a cycle is a huge step, so well done my darling!
Also, the relapse cycle ties in quite nicely with the ‘Type A’ personality type, more of which you can find out about here.
Thank you so much for supporting my blog, Sascha- I really hope it helps you! xxx
Thank you for this. I think this was the first comforting thing I have really heard in two months since my relapse. I had five months of awesomeness only to fall into a fatigue stupor. Can’t feel more alone -30 year olds aren’t supposed to feel this way! Alas I shall take all of your comments to heart
Hi my daring Liv- thank you my lovely. I know what it’s like to be in the prime of your life and not be able to enjoy it. Big breaths, an open heart and blinding faith are the only ways through it. Keep smiling.
Take care my darling- Katie xxx
With your help through this fantastic site I am finally, after 20 years, beginning to see the sneakier ways that I still push and am still negative. I too used to end up taking a week off here and there when I was teaching and felt horrible about it.
I am now building my own reading tutoring practice. However, this practice is within my family’s alternative health center. How ironic, we help our patients but I can’t seem to stop doing all the odds and ends of the business (taxes, getting supplies, calling insurance companies, filling in for employees, doing payroll, cleaning etc.) while tutoring, advertising for my tutoring, and going to school.
I can’t believe what I just wrote … my schedule is crazy time! So, I am here in bed, writing this in between paying bills…and on hold with my state’s unemployment commission….I don’t know how to stop!
One thing that is getting me down is that now that I have stopped going out in the evening and can’t really shop, dine, go to movies etc. – my family just goes on without me…I’m evidently no fun…I get that. Ahhhh, now that I’ve written THAT, I am remembering…I have ME, I have NOW, I have my spiritual practice that connects me to all. Thank you for all that you do and for allowing this ramble! I feel better already and I just hung up the phone.
Thank you so much for sharing my darling. I’m sure your family find you fun, but the CFS on the other hand, it’s not exactly a barrel of laughs! Best of luck with your tutoring practice! xxx
I posted here on May 28th and am happy to say that I’ve worked quite hard on acceptance, knowing my limits, and appreciating each thing I am able to do and be. My tutoring practice is going well and I am working on my master’s degree. Although I have these and a number of other major things happening with family and business, I have done the following to heal, conserve energy and keep horrible fatigue and debilitating brain fog – with that embarrassing slurring of words – at bay:
Energy work consistently – Pulse Energy Technique and sacral-occipital work (fortunately my family runs an alternative and complimentary health practice in the U.S.)
Diet of fantastic fruits, vegetables, nuts, seeds, animal protein, (no sugar, no grains, legumes or dairy), vitamins, olive, coconut and fish oils daily and lots of water.
Graduating exercise – I started with weight training – literally just 3 reps per day, 3 days per week, of the heaviest weight I could stand for the first month.
Noticing that nagging voice in my head – when I start asking myself, can I just get through one more assignment? Can I walk down just 2 more aisles in this store? Couldn’t I mow the lawn for just 10 more minutes? Shouldn’t I just do these few dishes? That questioning head space means NO! STOP! It feels like I am babying myself but losing the ability to think, talk, and take care of myself are not worth the price of pushing.
Perspective – CFS is not a disease for slackers. I’ve accomplished a lot for myself and many others but that is not who I AM. All of us deserve our lives as much as a lizard in the desert or a sloth in the rain forest. Life is precious and Time is its commodity and currency. Each moment is worth holding and cherishing and to be protected from the soul-crushing busyness that would rob us of them.
Thank you for all you do, Katie, you’ve changed and uplifted me.
Wow Linda- I have a huge lump in my throat reading this. I’m cheering you on my darling- so pleased for you! Yey! xxx
Hi Katie,
Just been searching on the net for M.E. relapse, coping and recovery.
Came across your site with your helpful tips.
After having a wonderful last 12 months, I’ve hit the buffers once again.
I am a very experienced M.E sufferer, having this awful illness for around 25 years.
Been doing super well, feeling very good, ultra positive, good sleep and diet.
Started going to the gym in 2010, building up my stamina and activities year on year.
I have managed to become super fit – doing classes – spin, body balance, body pump, fight club.
Thought I might have become invicible to a relapse – but of course at that point, it happened.
Although extremely had to take, I have to take a step back. I’m hoping after going say 10 steps foward,
with real care, pace and thought I might only have to go back a few steps before moving forward
once again.
ATB Graham….
Sending you all my good wishes, Graham- love your attitude! Thank you for being here, Katie
Hi Katie,
Day two of my relapse fightback. The key to getting this right IMO is not to beat yourself up too much.
Back in May i was doing great, now end of August it’s gone a bit wonky. It’s a matter of staying positive
and understanding that you must/need not go all the way back to square one. So today I still went to the
gym – instead of turning up at 9.30am and doing two classes, I turned up at 10.30 and did one. It would have
been easier to stay at home, but IMO this would have been the wrong move. I hope to correct matters and get back
on track in two to three weeks, I’ll let you know how I get on.
Regards Graham…
PS. I hope it doesn’t sound condescending to mention the ‘gym’ to other ME/CFS sufferers, I see myself as lucky as
I know many people have it much worse than me. Although I’m pleased to get to where I’m now at – I have been
bedbound twice for 6 months in the past.
Graham, we’re all at different stages of our journey here, so don’t worry about sounding condescending! You’re definitely right about not beating yourself up too much- it takes more energy as well! Thank you Graham- x
Hi again,
As of my post 25th August i promised to get back and let you know how my relapse ‘fightback’ has been going. Well I had hoped to get back on track in two to three weeks, but it has taken around five weeks. I’ve been feeling what is normal for me for around a week now. Strange thing is, I didn’t do a lot to correct matters, just eased back a little. So difficult to know if I’m in control or is ‘it’ in control, however hard I try, fluctuation in symptoms seem to come and go. I think it may be wrong to think to much, best to be mega positive and constantly move forward.
Graham, thanks so much for getting back to me- I was wondering how you’d been getting on! The important thing is just to appreciate and be grateful for where you are right now- it sounds like you’re in a great place!
Keep us posted- thanks Graham!
Katie
Thank you Katie…it all makes sense..As adults we train ourselves to be productive..This then becomes part of our self definition..Redefining ourselves to incorporate our limitations takes time and a shift in self acceptance…Things like weakness and dependancy issues..Social and work pressures and financial committments all come into play.. It’s a road towards growth but never looks like it….It’s important to also do as many practical things to improve the situation…either through diet…alternative or medical interventions or whatever works…
In my years as a Nurse I was frequently impressed by how people confronted serious illness with courage and great strength of character…not withstanding times of fear…These people left impresssons on me that served as markers in how I approached adversity….Teaching me to be grateful and helping me to understand how life can be so unpredictable…
I find prayer helps me and having a spiritual overview helps me to be patient with myself…
If I can use this experience as a sort of spiritual currency for others in accepting it and offering it for others …..then it isn’t wasted…or useless..Also maybe in the process I can grow in ways unseen…
So good luck to everyone…will remember you all in my prayer…
Frances..
Such beautiful words- thank you so much Frances. We’re always inspired and learning through life- xx
I have been ill for 5 months now. I wasn’t eating properly, not sleeping properly, very stressed and I was singing a lot. I did one dance class for a couple of hours and that same day, I started to get a sore throat and my body started aching really badly. A few days later my throat was closing up, my lymph nodes in my neck were swollen and I had a pretty high temperature. I did have glandular fever about 6 years ago and I’ve always felt exhausted really easily and I get ill really easily. I haven’t been able to relax because I keep worrying what’s wrong with me. My lymph nodes pretty much always hurt, my body aches a lot. It feels a bit like my body is bruised. I have reoccurring sore throats when I get really stressed my jaw hurts, my cheeks and my ears hurt I also get pains in my hands and feet. The doctors haven’t done many tests. They did another glandular fever test, but if heard, that it can’t be positive twice, since it’s already dormant. I had a HIV test, from being so paranoid. They don’t see any point in doing anymore tests, since they said, from my depression and anxiety related problems, that I’m highly likely to develop problems. I can’t stop worrying about what’s wrong with me. I really feel I’m going mad, since I keep thinking it’s something severe.
Kim, maybe you could ask your doctors to conduct a range of tests on you, just to put your mind at ease? There are lots of crossover illnesses with CFS/M.E, such as Lyme disease and even anaemia, so it’s worth asking their opinion. As you know, I’m not a medical professional (click here), but it might stop you from worrying and give you a clear diagnosis.
Sending you lots of love my darling- xx
Hi guys I’m kimberley and I’m 28 with 6 children and I’m scared I keep having relapse I lose all movement to my left arm and both legs I’m now in a wheelchair I don’t understand me diesase I can’t hold healthy things I’m really week in my self and I want to know how bad this could get I’m already forgetting a lot of stuff and I’m getting very frustrated some please help
Kimberley- sending lots of love to you my darling. Please don’t focus on how bad it could or might get, as you’re making yourself more anxious (which could make your symptoms or relapse worse). Try and stay as calm and focussed on what’s happening now as you can. Do you have family who can help and support you? xxx
Seem’s this could be me you are writing about..what inspirational you are giving hope to everyone that reads this.. wish i could learn your ways xxthankyou
Hi Katie! I’ve read a lot of your articles and they have given a sense of comfort and support that I didn’t know I could find in a text.
Thank you so much xxxx