CFS relapse after traumatic events

I emphathize with you, Niki.  I remember one time, many years ago, when I thought I was recovering from CFS.  For three months I felt normal after having lived with this illness for several years.  I was absolutely delighted--thrilled!  Then some serious family issues showed up in my life and all those wonderful months disappeared within a few days.  Yes, I cried!  Since then, I have had short periods of feeling "normal."  Now, at age 81, I can say that every now and then I have a day or two or, sometimes, three of feeling normal.  The body can take just so much stress, Niki.  Been there; done that.  If this old lady can offer any advice it would be for you to give yourself kindness.  Rest as much as you can when your body tells you that's what you need.  We tend not to listen to what we know is the right thing for us because we watch other people who seem to accomplish so much more.  The truth is that by living the difficiult lives we lead and by setting examples of patience and kindness to our friends and relatives, we are accomplishing a lot!  Your body may have, as you wrote, "taken a big step backwards"; however, your spirit can move on in spite of the disappointment.  None of this is your fault.  I don't know about you, but I remember feeling guilty because I couldn't keep up with others my age, couldn't accomplish as much, etc.  Now I accomplish what I can and that is good enough.  I rest when I know that's what I need to do and have, for the most part, stopped second-guessing myself: Am I really sick?  Could I do more if I tried hader?  Am I just a big wus?   Don't fall into that trap!  CFS demands bravery and patience and much love.  Don't forget that you will have good days and enjoy them.  For that matter, find something about every day to enjoy.  CFS demands its victims learn to live life more slowly and find joy in each day in spite of illness.  Power to you, Niki!  This exaccerbation will ease and you will find happiness in the life you have.  Hugs to you!

Hi Niki

Yes, big support from me. I don't think I've ever had anything I would describe as a trauma but I've felt for a long time that my ME is stress related. With me it can be fairly everyday stressful situations such as my daughter being ill for several weeks or problems in the wider family. If they go on long enough then it does seem to be a pattern that I'll have a relapse. The two unusual things over the last year or so are that firstly, the level of stress needed for a relapse seems to have reduced an awful lot (possibly because of age - I'm 50 now), and secondly, that since November, I have been meditating consistently and it may be helping with my body's reaction to anxiety. Since the old stressors are still present and at times pretty intolerable, I would have expected a setback at some point but as long as I manage my energy levels, I can honestly say I haven't really had even any ups and downs in that time. And yesterday, I took the first tentative step back into my old career

As Phillis says, try to concentrate on what you can do rather than what you can't and give yourself plenty self-love and congratulations for all the things that you can do. I try at the end of every day to count ten positives about the day. If I can do that, I tell myself I've had a good day. I've never had a bad day yet

Lots of love over the miles

Pete

Hi Niki,

Sorry to hear you are suffering so much at present. My cfs/me is trauma related with the onset trigger being a car crash I was hurt in. I too have had ptsd symptoms due to this and had a course of emdr that I feel much helped those symptoms. I don't relapse at present because I'm still having symptoms everyday. today I'm not great but, not as bad as a few days ago. What I want to say to you is, I fully understand the place you are now. The disappointment, frustration and almost shame for not being "ok" I've been there and it's awful and it's terribly lonely and it feels too overwhelming. you're not alone in your feelings on here as many people ride the same roller coaster-me Included. What helps me is being gentle with myself. Sounds like you know the trigger and this could make it easier knowing that. I know you're saying it feels like a step backwards but, can you see t as a step sideways? Just momentarily while your body and mind adjust. Bullying is horrible and can really tap into our most negative thoughts about ourselves. When you have this condition, it can be harder to grasp our real self and feel ok. Sometimes it's something we have to remind ourselves. You did nothing to ask for the bullying. Nothing for the childhood traumas and nothing for cfs/me. Be really gentle on yourself and rest well and take things slowly right now. Do things you like, like watching a favourite dvd, having a bath, eating foods you really enjoy. See this side step as temporary and take things easy until you start to feel the cloud lifting.

Best wishes

Beverley

Hi Niki,

I've  had ME/CFS since 1997 and I've noticed a definite correlation between trauma and relaspes. The trauma need not be major, like a car crash - it can be small (reducing certain meds) or even something pleasant (like getting married).  I started keeping a mood journal several years ago which has helped me track moods, situations, medication - I have a better picture what my triggers are.  I wish you the best of luck.

Just a short note to tell you I sincerely hope you feel better today, Nikki.  That's all.