Day 1 ME/CFS many years UK based

[ChrisinCheshire]

Here follows a brief background, I’m being way more candid than I would normally be thanks to the anonymity of the internet.

I’ve had ME /CFS for 25 years. Diagnosed a few years after graduating during a time when I felt I’m ease stress, loneliness and suffered a flu like illness. I just didn’t get better, fatigue and fog became the new norm. Despite this I carried out working full time in a demanding job for 5 years until I could do it no more. I just had to stop. so I packed my bags and went home expecting to get better.. that didn’t happen. I am classic moderate ME/CFS, most people I casually know don’t realise I am ill. I put on a display on the good days and the bad days are spend getting chores done and then largely horizontal.

Symptoms are too many to mention, but the most debilitating are crushing fatigue, dizziness, brain fog, eye disturbance, gut disturbance, temperature regulation etc. It seems to me that it is a ANS system gone haywire!

I’ve spent thousands on seeing specialist Drs. Nothing has really helped aside from the mind therapy programs such as The Lightning Process and ANS Rewire. I can buy into the concept that the mind (limiting thoughts) is triggering these symptoms and is caught in a vicious circle - the more I’ve focussed on the symptoms the worse they get. So these help a bit, especially during a crash but are not a cure for me.

So, roll on a few years and I’ve been bumbling along and have a crash (I always research when I crash) and I got thinking about the psychosomatic nature of my illness. For instance, why do I always feel ill before a holiday? (It’s usually because I’m stressing like mad wondering whether I will cope with the commitments) and then why do I soon feel OK again when the thing I feared is happening?


So, I read an article referencing Sarno in a journal and it struck a chord. I fit the personality type perfectly, striving to achieve to make up for insecurities. Outwardly successful, inwardly fearful. I can buy the subconscious theory having recently read ‘The Chimp Paradox’ which is a similar theory about how modern humans are constantly competing with their chimp brain instincts.

I first read The Mindbody Prescription followed by the Divided Mind.

I had one attempt of journaling about distressing childhood memories about a month ago.. I had a terrible crash afterwards and have still not got back to my base level (coincidence?)

I’m here because although the book are good, they don’t really guide a patient through exactly what they need to do as next steps.

So here I am, determined to following the program.

Oh and what would a life without TMS mean to me? Freedom to do what I wish (I feel trapped and horribly limited at the moment)

 

[hecate105]

The program will help... But then if you need more find more progs/books etc till you crack it....
I have been there - 22 years of fibro - but now I am off to cycle around Scotland ..... Do it now - don't waste time....every moment spent learning about our psyche is time well spent - it applies to us and it applies to every other flawed human (ie everyone!)
I was trapped - using a wheelchair... Miserable... Now I will be miserable on a bicycle! Camping wild, living outdoors... Having the time of my life!!!
Understand your tms, challenge it, then get on with your dreams....

 

[Cactusflower]

Rebecca Tolin healed from similar chronic pain issues https://www.rebeccatolin.com/ (REBECCA TOLIN | MIND-BODY & LIFE COACHING)
I have dizziness/vertigo, temp reg. issues, eye disturbances similar to you, and a host of other weird symptoms (but my pain issues are different). For myself they come and go - are far less when I am less anxious, generally, and I consider these symptoms part of a cranked up nervous system. Even when we think we are less anxious because we are so used to being in an anxious state, they can present. Mine are now intermittent and will most likely go away, nothing to be afraid of.. just messages that your nervous system is still on high alert.
Changing mindset is huge snd takes time. You aren’t trapped, you are simply being told by your body and brain that you need to take care of you. This change of mind alone is liberating.

 

[ChrisinCheshire]

DAY 3 (Day 2 ‘sad’ and ‘angry’ blogged privately)

Last time I exercised. I’m typical boom and bust ME/CFS which means at high points I think I’m cured temporarily (usually a few days) and then hit the bottom again. During these boom times I often push harder and decided to exercise

last exercised probably about 3 months ago during a boom. I developed a plan in my head that things were now Ok and I would join a gym. I spent a day doing lots of press ups, gently jog and sit ups. I felt good doing it, I felt enthused and excited for a new future with endless possibilities. However, the following day I woke up feeling fluey and aching hi hi immediately triggered the feelings of “oh no I’ve overdone it, here comes a crash”. The physical symptoms were such that I became engrossed in them and couldn’t ignore them. This then preceded a crash where I felt very low and started fearing for the future

I have not exercised since because I have not felt well enough to exercise. Right now I can feel things improving, on one hand I am conscious that getting active will precipitate a boom or bust cycle and on the other hand I’m aware than the crash may be from psycho conditioning and from my learnings here I can learn how my thoughts and feeling are triggering the symptoms. I don’t feel like I have enough tools to prevent the crash yet.

 

[Cap'n Spanky]

CFS and those cold/flu like symptoms are tough. I recovered from several pain issues many years ago and they haven't been back. But CFS and its associated bag of tricks has been more challenging to completely shake.

I can totally relate to your experience with exercising. I've had the boom and bust many, many times.

Lately, I've been doing Nichole Sach's - How to JournalSpeak — The Cure for Chronic Pain It has been very painful at times. It's brought out a lot of sadness. But it has also incredibly insightful. It's made me aware of just how large and significant my baggage is. I think that's an important part of this journey. How can we know ourselves if we don't face the monsters hidden in the basement?

But in the end, it's still a matter of calming the fear and living my life. Accept that unpleasant feelings (both physical and mental) are part of life. Don't fight and suppress them. Don't wallpaper over them. Allow them to be there. But most importantly, don't give them undue importance. They don't have to trigger strong emotions and crippling fear. Accept them for what they are.

Then go on and live my life.

 

[ChrisinCheshire]

Thanks for the kind and insightful comments on my thread.

Day 5 question to ponder - what is the most disheartening thing a doctor has told me about my symptoms and how have I kept that on my mind?

I’ve always been unable to accept that I should learn to live with and manage my symptoms - which is the default management of ME CFS

I think that due to my TMS personality traits I feel inadequate, I don’t measure up to my peers and part of the reason is ME/CFS. I’ve been unable to match up because of the ‘illness’ and this in turn leads to my boom and bust cycle where I cling on to a hope I have been spontaneously cured only to feel another low again.
In fact it’s usually where I feel despair (a week into the crash), lose all hope and begins to accept my fate that I start beginning to feel better. I wonder if this is my true emotions coming to the surface?

I don’t think I keep the lack of treatment availability on my mind. I think for the last 20 years I have been like a rudderless ship going from one way crisis to the next, probably engulfed by negative feelings and living in vein hope that tomorrow will be better only to be crushed again.
I’ve never delve deep into my feelings, but I know that aside from relative brief periods life never felt easy (despite a successful facade). I’m determined to explore much more deeply now.

 

[Cap'n Spanky]

I believe you can do better than manage your symptoms. I believe you can be symptom free or reduce your symptoms so much that they don't matter. I say this based on my experience and the experience of thousands of others.

Glad to hear you are ready to delve deep into your feelings. Nichole Sach says to get it all out and don't hold back. Write things you'd never tell another person. She cites her own example of saying "I hate being a mom!"

Sometimes it's very unpleasant and painful. Other times it's incredibly freeing and invigorating.

For me this kind of journaling accomplishes several things and they all kind of overlap.
1. I realize that sometimes these feelings actually ARE worse than the symptoms. So, it makes sense that my brain would see these as dangerous and desperately try to keep them from coming to the surface.
2. It strengthens the connection in my mind between my feelings / emotions and my physical symptoms. I no long doubt or question that link.
3. That it is totally safe to fully experience these feelings. It may be very unpleasant and painful. But I can do it and I will not die. I can sit the feelings, allow them to be there, watch them and I'll be fine. This has been key to getting better.

 

[ssxl4000]

I’ve always been unable to accept that I should learn to live with and manage my symptoms - which is the default management of ME CFS

My refusal to accept this is what led me to TMS - I am glad it has done something similar for you. Losing hope truly is the worst. Sorry about your many years of suffering. I dealt with ME/CFS for a much shorter time, about 16 months. I will spare the details, but all of my friends and family thought I had cancer or something else terminal - I looked and felt terrible. Drs. Sarno, Schubiner, and the SEP here helped me shake it pretty quick. As CFS comes with so many symptoms, some did linger for a while, but overall I got my life back.

I just wanted to share so you know this program can help ME/CFS. Also, random note . . . I recommend opening a new thread for each day's posting. The title will be more on point and it may attract more readers.

Feel free to message me if you have any questions or doubts. Keep up the good work!