Why I believe I got sick again after making a Full Recovery from ME/CFS.
April 16, 2016 10:07 amPart 1
A lot of people have asked me why I think I got sick again after a spending a number of years believing I was fully recovered from ME/CFS. I wanted to share my thoughts on this with you in the hope it will help any of you on your own recovery path, to avoid making similar mistakes to the ones I made…
This is a personal post for me to share, but one that I feel is so important as it includes some of the major lessons I have learned so far. I dive into what life looked like in the years I recovered my health and how I gradually got sick again.
I was first diagnosed with ME/CFS aged 17 and much of my late teens were spent barely able to lift my head from a pillow. However, after endless appointments with different practitioners, many setbacks along the way and so much trial and error, eventually I reached a place that I believed was full recovery of my health. I felt well, I had energy and I was able to work long hours. I went to the gym, socialised and attended a high energy dance class twice a week. The days of my life being completely ruled by illness were gone and I found myself in a beautiful place of freedom.
There are no words to describe feeling well after so many years feeling so desperately, dreadfully unwell.
I worked hard to get to that place. The ‘recovered’ place. It didn’t just happen by itself. During my first eight years with ME/CFS I tried so many different things to help myself heal. I read hundreds of books on healing, including books on the psychology behind wellness, as well as the ones I read on the physical aspects of healing the body. I followed the instructions of my nutritionist by sticking to a strict anti candida diet for well over 3 years (this meant no sugar, yeast or anything artificial) and I was also doing the techniques taught by the Optimum Health Clinic with a fierce commitment amongst a combination of other things I had learned along the way.
Eventually, over time, it all paid off. I reached that elusive place that is known as recovery…
With my newfound energy and health, I threw myself into life, embracing the world I had been held back from living in for so long, with an unfaltering enthusiasm. I had discovered NLP and was immersed in the study of the power of the mind during this period of my life, it fascinated me.
I read books by people such as Anthony Robbins and listened to audio by the likes of Jim Rohn and Les Brown. I had such a strong belief that you could create what ever life you desired if you just put your mind to it. It was all very ‘head based’ with not much soul, but I felt empowered and the uplifting energy I felt from discovering this new world, was such a welcome contrast to the lacking of energy of previous years.
I felt invincible and the fact I had recovered from such a horrific illness, that had held me captive for so many years, was evidence to myself that I could do anything.
I set up business working as a Complementary Therapist (I had done my training gradually in the years as I recovered my health). I worked from my treatment room at home and also at two different clinics. I loved being able to make a difference to peoples lives and loved my job. Alongside this, I was doing my NLP and Hypnotherapy Practitioner Training in London with the Optimum Health Clinic one weekend a month, which meant regular travelling and extra study. I also did occasional voluntary work for the Local ME groups doing talks and such like. I just wanted to give something back as I knew how desperate it felt to be trapped in that world of chronic illness with no clear way out.
But this wasn’t where it stopped, a year or so into my newfound health, I began working alongside a Network Marketing Company that, at the time, I was blown away by. Suddenly I was at huge events surrounded by people who also loved NLP and ‘positive thinking’ as much as I did. People who were taking their lives into their own hands. Ambitious, determined people. Some of them very wealthy. It felt like the world was my oyster and I suddenly had this opportunity (or so I believed at the time) to make a lot of money and in turn, create the life of my dreams. I became fascinated by the idea of getting wealthy, having a posh car, loads of holidays….you get the idea.
I worked hard. Really hard. I’d get up and start my Complementary Therapy client sessions at 9.30, working until lunchtime. I’d come home, get changed out of my Tunic and into a Suit, before going on to have lunchtime meetings for the Network Marketing Company. After this, I’d go back home, change back into my Tunic, see a couple more clients. Then most evenings I would travel somewhere (sometimes London, which would involve a two hour train journey each way) to run an evening presentation.
My days were so incredibly full. I’d squeeze gym sessions and Dance classes in and also socialised as much as I possibly could too. It didn’t occur to me that I may be over doing it at the time, I just felt energised and was loving my new life.
I believed there was no way I could get unwell again
At my dance class in 2008 feeling Healthy and Strong
When things began to fall apart…
The things I had done to heal myself, the basic self care stuff such as Meditation, Yoga and Juicing all began to fall by the wayside. I often intended to do these things, but life was so busy that they would just end up way down at the bottom of my priority list. I wasn’t eating well at all, often just grabbing a sandwich on the go. There wasn’t time to focus on Nutrition like I had before. I lived this way for the best part of my mid twenties. I was fully immersed in my achiever mode during this phase of my life, without even realising it, setting endless goals for myself and then wanting the next thing once I had achieved them. Life was hectic and busy with very little balance and very little downtime.
As the years went on, I began to feel old familiar symptoms returning. The constant exhaustion became part of my life once more, but to begin with, it was at a level that I could push through. I started to feel quite spaced out, as if I wasn’t connected to my surroundings. It felt like I was viewing life through a pane of glass. (I now know this to be called depersonalisation / dissociation) But I kept going, I just pushed the symptoms I felt to the back of my mind. I kept life full to the brim so there was no room to even consider the notion of becoming ill again, I guess I was running on adrenaline, once my true energy reserves started to burn out.
If ever I stopped, such as on holiday for example, it felt as if the symptoms and exhaustion got so much worse. It was as if I had to lose myself in my external world to distract myself away from what my body was actually feeling. This is where the use of the Stop Process did me a disservice, I was using it to push symptoms away and deny the messages my body was so desperately trying to send me.
Now, more than ever, I wholeheartedly believe in the mind body connection. Symptoms are a powerful way of our body trying to communicate with us.
Of course, ruminating over how we feel and running thought patterns about symptoms obviously isn’t helpful or healthy, but respecting our body and being receptive to its messages, are something that I think is actually really important.
Pushing symptoms away in a state of denial, can only lead to those symptoms increasing and getting louder in my experience, and this is exactly what I was doing during this time in my life.
The Day my Life Changed
In February 2010 things reached breaking point. Mark (my boyfriend at the time) and I had booked a cruise to the Caribbean. I remember in the weeks leading up to it thinking ‘If I can just make it to February, then I can have a nice two week rest, recharge my batteries and everything will be okay again.’ It was as if the thought of that holiday was keeping me afloat somehow.
The holiday that looked like heaven on the outside…but turned out to be my own version of hell.
The night before our flight to Jamaica, we had booked to stay at the airport hotel . Our flight was early the next morning, so we thought it would be a sensible idea to stay at a hotel near the airport to save us getting up early and having a 3 hour drive before a 14 hour flight. I climbed into bed that night and closed my eyes, relief washing over my body. I had made it, it was all going to be okay, I could rest now.
The hours passed….but no sleep came. I was absolutely exhausted, but my brain was wired. The alarm went off at 6am, and I hadn’t even had one minutes sleep.
I dragged myself out of bed, had a shower and pulled on some clothes. I remember the busy airport terminal feeling so overwhelming that day, my exhausted over adrenalised senses making every bright light and sound unbearable. But things quickly went from bad to worse as I was just doing my best to stay upright and fight the dizziness that engulfed my body, the flight ended up being delayed by over 24 hours.
It was two and a half days later when we finally arrived in the Caribbean after a 14 hour flight. My symptoms were so severe by this point, it was as if I had finally been pushed over the edge and catapulted into full blown ME once again. My body shook, the room spun and there was literally zero energy left for my body to function. There are no words to describe the feeling when your body gets to this level of depletion. It truly feels like your body is shutting down organ by organ and forces you to lay flat for its own survival.
The two weeks that were meant to be heavenly, turned out to be my own version of hell. Trapped in a small cabin on a cruise ship, feeling an excruciating level of exhaustion and severe dizziness, whilst at the same time feeling an internal terror at what on earth was happening to me. I felt an added layer of unhelpful guilt on top of the physical suffering, because Mark and I had saved up for so long for this holiday, and it was obviously ruining it for him, but i was powerless to do anything. I pushed myself as hard as I physically could, and I would occasionally try and leave the cabin maybe to get some food or have a short walk around the ship. But it was excruciating.
I struggled sitting at the dinner table each evening, the sounds around me of gentle chatter and plates and glasses being used, felt like a drill being pounded deep into my brain. Being upright was unbearable due to the sensation of the room spinning and the intense weakness in my muscles. I would usually be taken back to my room after a few minutes of unsuccessfully trying to sit through a meal, often before the first course even arrived. The most I could really manage on that holiday was laying on the deck on a sun lounger, with my eyes closed. My symptoms were severe and completely overwhelming. The exhaustion excruciating.
Curled up…trying to spend some time outside the cabin on the ship
I tried to meditate, to calm my body down. I was applying everything I knew, but nothing was working. Needless to say, the journey home was absolute hell. I was semi conscious on the long haul flight home, by this point, my body was in an absolute mess and as soon as we landed in the UK, I was taken off the plane in a wheelchair and straight into the awaiting ambulance.
From that moment on, I went into the darkest period of my life so far. Life was about to force me to go inwards and learn some very deep lessons.
I spent many months bedridden, unable to sit up or feed myself and was totally dependent upon my mother for 24 hour care. My body had completely crashed. I was trapped in a body that no longer worked. I couldn’t sit up or open my eyes and continuously had the sensation of falling into a void as I lay in my bed. If I tried to sit up, I shook and the room spun around me. Perhaps the worst thing I experienced during this time of my life, was alongside the serious physical deterioration I felt a high level of anxiety. I don’t mean a little bit anxious, I mean off the scale crippling anxiety. It was as if my entire world had crumbled around me, and with that, came the highest level of terror I have ever experienced. I felt a total loss of control over every aspect of my life, my external life, in terms of being able to sit up, walk, work, see people, but also my inner world. My sense of self was completely destroyed. This intense experience went on for many. many months.
I won’t expand too much at this point on those years following my initial relapse and all that they entailed, but I shall say, that this is the moment my life completely changed. I believe with all my heart, that as awful as it was, it all happened for a reason.
I had lost touch with my true self, my true values and had got swept away with a life filled with over achieving and total disconnection from my body. Working ridiculously long hours, losing sight of what truly mattered and having no sense of balance between work and rest. My life had become all about achieving and reaching the next goal.
It’s as if my body gave me signals to try and steer me back onto the right path, but I ignored its calls, eventually giving the universe no choice but to step in and take me to a place where I was stripped right back.
My entire external world as I knew it, was taken away, including my 13 year relationship which broke down due to the strain of what was happening to me. I could no longer base my life around achieving and goal setting and defining myself by what I could do…because I could no longer do anything. I couldn’t even wash myself unaided during this period of my life.
Coming face to face with my innermost fears, such as not having any sort of control of my day to day life and having no choice but to actually feel my deepest emotions due to their intensity, taught me some of my most valuable lessons. I began to learn a little about to surrendering to each moment. Echart Tolle’s teaching helped so much with this. When you are physically trapped in your body, learning how to gently begin to surrender to what is (as oppose to the fearful, clutching resistance, that tends to come so much more naturally) can provide glimpses of respite from suffering.
The importance of accepting all emotions was another of my learnings. We often label emotions ‘good’ or ‘bad’ and grasp at the ‘good’ ones whilst rejecting or pushing away the ‘bad’ ones. I have found that embracing all that comes with being human, is a much more healing way to live. Only allowing yourself positive thoughts, and placing ridiculously high expectations on yourself, beating yourself up and giving yourself a hard time if you have a low day or feel anger/anxiety/etc doesn’t allow for true energy and life to flow through you.
During my healing journey this time round I feel like I have gone so much deeper than the healing that took place in my early twenties. I feel more in touch with my true self than ever before and my entire perception of life has changed. I appreciate the small things, such as a flower blooming or the colour of a sky as the sunsets. I know the importance of self care and self love. That true peace and happiness comes from a connection to yourself, your true values and those you love, not from external achievements and monetary wealth.
I still have a way to go on the road to physical health, but I am making steady progress with every year that passes. As many of you already know, I am dealing with the current physiological imbalances and dysfunctions that result from the years of pushing myself to the extreme, alongside my genetic predisposition and the initial EBV virus. But the healing I have done on a deeper more soulful level, is something that gets stronger as each month goes by.
There were lessons I needed to learn that I don’t think could be learned any other way than experiencing suffering to such a degree, that I had no choice other than to fully face things and begin to work on my ‘stuff’.
I truly hope this blog post helps any of you experiencing your own healing, to respect and nurture yourself and your body as it heals and to continue to do so when it is fully healed. Healing isn’t something to be done and achieved and then taken for granted, I learned that the hard way. Keeping your body in a balanced state is a lifetime thing and I don’t think we should ever lose touch with that, whether we are in the depths of illness or fully healthy.
Keep nurturing yourself,
Emma x
Click here to read Part Two of this post ~ ‘The 8 Life Changing Lessons‘
Categorised in: Emma's Journey, Healing resources, Insightful inspirations, ME/CFS
46 Comments
❤️
This is a wonderful post ,honset ,true ,we soon all fall into old patterns ,the body doesn’t forget ,am so pleased u are able to start journey again it must be hard ,I know as I have be guilty of slipping back now again ,am a human being not human doing ,am just as loved important and need to be mindful of what I do ,take care ,today my family have gone out how would love do so but am recovering from virus yet again so I self sooth ,relax and don’t beat myself thT am not with them ,we forget how fast placed life is Emma ,so many people are wired getting burnt out not listening to our body until bang it hits us ,u got a lot of skills embrace them and look after uself ,heal ,xxxxxx
Thank you for your honesty and insight. A journey has many paths, not one straight one… I hope you will soon be feeling the benefit more fully of your healing process. I’m encountering many speed bumps along the way… but always good to hear from someone else which makes one feel less alone in all this. Dealing with, and accepting, this condition is one thing… dealing with, and accepting, what we have lost personally, emotionally, financially, is quite something else. Thank you for sharing Emma. X
Hopefully this will give my 18 yr old daughter hope, as she is the same as you were at her age, bless her xx I just want the magic wand to work, to make her better, give her back the life she deserves being a teenager xx
My regards to you & your daughter . M.E. Key for recovery is to break the cycle in the sub conscious. A. Awareness of your bodies physical state. being /feeling Anxious B. Awareness of your thinking or thoughts “those that don’t” =any goodness. C. Act on the above by counter action. Feeling anxious replace with calm & repeat. “Each time.” you feel anxious. D thoughts & thinking . Each time a thought or your thinking that isn’t of “good” Apply “replace” with “good”. Again repeat each time. As needed. I write this not as a doctor but as a m.e suffer. From 2004_2014 bedbound lifebound..i had it severe. Within three weeks of this, exercise I have shared I was jetting off from the UK to Cuba for a, holiday something that I would never “belived only in my dreams. 7 years later & the years, have been as before I had. M.e..
So much to say but i think i will leave it at this: you inspire me! Thank you! =)
Thanks for sharing your experience. I can well imagine how hard it must have been. So good for us to realize that self-care is a daily part of life!!! Sending you healing thoughts and wishes for a speedy recovery!
Fantastic post Emma. Xxx
Thank for this great post Emma.
We cannot forget the lesson we learn when we are ill. That is the gift of CFS, learning to let go of the overachiever inside of us, learning the joys and benefits of a slower pace of life. As I am on my road to recovery, that is on thing I never want to loose. I never want to get back to a life where I am running around like a mad man. I will forever be grateful for this new perspective of life that CFS has given me.
I also really like the part about acceptance. Acceptance is peace, and peace is the ability to live a meaningful life. This post actually ties well into what my last post talked about.
Keep up the great work Emma. Both in blogging and in your road to recovery.
Cheers, Matt
A very brave and honest post, my best wishes for your continued recovery x
Thank you so much for sharing Emma.
I am what I’d describe as 99% recovered.
I’m constantly reminding my-self to pull back, when family would rather I step up and give more is the hardest. But I have learned the hard way that if I don’t take care of me then I will have nothing at all to give to the important things I want to do. I feel though that the biggest learning curve is still for my family to learn, especially for those who still expect me to manage what I used to.
This was a wonderful post. Thank you for opening up so much and sharing this huge part of your experience. As always, this resonates with me deeply.
I love that you talk about looking and accepting all of it, the good, bad and the ugly. This has been a key for me as well and I’m going deeper into the experience of seeing myself beyond all those things that I’ve identified with (be them good or bad). It’s a level of self acceptance and spiritual connection that I could never have understood without having fallen into this void.
It’s also the place where I connect so much with you because I know that you are on this very same path and it’s so nice to know I’m in such good company. It makes it less lonely when you get to some of those places on the journey that seem barren and miles away from what you’ve known. You sharing as you do is so helpful to your fellow travelers.
Looking forward to your next post. Blessings to you my sweet soul friend.
XX
Teresa
Emma you are an inspiration! Having ME/CFS myself I can understand how it affects all parts of your life but to hear how extreme it has affected yours and that how you are showing the true strength to overcome this again is amazing. I am probably at my lowest point st this time because of this condition but reading your post makes me think maybe I can get through it… I wish you a great recovery Emma and the strength to continue to do things you enjoy in moderation. Good luck and thank you for sharing xx
Wow – such a brillIant post. As a long time ME/CFS sufferer, I can relate to a lot of what you have written. I have never got to a “recovered” stage but I know I am luckier than some as I have had improvement from the days of having so many symptoms I didn’t know how I could be alIve and feel so very ill and completely lacking in any energy. Long days where the most I could to was watch the clouds in the sky. Having to be fed my meals and barely having the energy just to eat.
Very best wishes to you as you continue your recovery journey.
Thank you Emma for your profound vulnerability to express what you have.
Best wishes on your healing journey.
I can relate strongly to so much of your journey. I find it amazing what I’m realizing now, that I never did when I was so caught up in the push push; super achiever; pushing to grow my own business and being a single mom at same time. Like you, I was getting messages to slow down, sleep more, meditate more but I did not listen. My children, my clients, my mom passing came first. I, too, did not feel how many symptoms I had until I was “forced” to give up my business and once my nervous system calmed down a little, I felt the symptoms- physical and emotional- so much stronger.
Blessings.
Emma, I’m sure you already know how much I admire you for your strong spirit, your honesty and
determination (I could go on and on about your virtues!) but I want to send you love, say thanks for writing this
and to let you know I am with you every step of the way, cheering you on and sending love and prayers.
All our individual journeys are long and arduous, but by supporting each other, one day we shall reach our
goals X X X X
Such a lovely honest post Emma. I am at the phase now where I am feeling better and can do stuff again 🙂 I do tend to push and need to remind myself not to push through. Thank you for the wonderful reminder and advice. Blessings XXX
Excellent post, Emma. Your story resonates with me in a powerful way. A few years back I partially recovered, not fully, but enough for me to get back on the “merry-go-round”. No more pain, clear mind, no meds, happier than ever. I made family dinners, socialized, traveled and more. My doctor pronounced me free from Fibromyalgia because none of the tender points hurt. I kept pushing myself as if I was trying to prove something or to make up for lost time or to gain acceptance. I made no connection between my ego-driven behavior and my weakening body. Inevitably, I crashed. That was 7 years ago and I’m still struggling.
However, these 7 years have not been a loss. I now know that I do not want to be the frantically busy woman I was before I got sick and during my short-term recovery. I have learned to love myself, to slow it all down….to live from my spirit, not my head/my will…to honor and nurture this precious life that God has given me.
Emma, I wish you continued wholeness and healing. I look forward to reading part 2. Eileen
A really well written summation of what would have been so difficult to live through. I can’t wait to read part two!
I have Fibromyalgia and CFS and have worked to a point where I feel mild to moderate pain and fatigue levels daily, except for flare ups. I have to really remind myself to keep up the crucial self care mechanisms and not push it. It’s a difficult journey. Signing up to your posts now! X
Thankyou for your honesty and well done for writing. I am also in my relapse, 14 months in actually after 3 years back in the land of the living. I have Fibromyalgia, I thought I had it controlled, I lived in red bull and promotions and left the familiar voices in a box… Last March I went to the GP askeddher to increase my usual medication, the old familiar signs wee back. After a brutal and honest conversation she signed me off work, I’ve just been finished through ill health… I’m 39 next week…… Your an inspiration and a reminder that I shouldn’t push myself back to recovery again as lately the thoughts are creeping back and the habits of a “normal” life are making an appearance. Thanks x
Please add me to your mailing list.
I also have ME. thanks for posting. X
Great post, i will read your next ones
Thank you for a wonderful post Emma. Just what I need right now x
Thank you for your honest words and the courage to share this. It means a lot to me as I realized through your story that I am much in danger of overdoing it again now that I am feeling so much better!
thank you !
Thank you Emma for being so brave and sharing your story ❤️. I too believe sometimes we don’t always learn the important lessons without first experiencing the harsh reality of them. Sadly, I learn’t some tough lessons myself last year in regards to my self care and what my body needed to heal and continues to need.
Amazing post Emma. Thanks for sharing. Kerry x
Such a raw, honest post and one I’m sure was hard to write as you relived those dark years. A true inspiration thanks for sharing x.
Beautifully real, raw and honest post Emma. Supporting you with love always xx Katie
I just wanted to thank all of you for your love, support and wonderful messages. The feedback I’ve had has been totally unexpected. Thank you so much to everyone who’s taken the time to write me a little message and respond, I appreciate every single one more than you could know
It was a really personal piece of writing for me to share, (as I’m sure you can appreciate) and as I pressed the publish button I was actually a little bit nervous.
But hearing that it’s touched some of your hearts and perhaps even helped with your own healing journey, makes me so happy that I decided to write about my experience and share it with you.
One of the things I’d like to add at this point, is something that maybe I should have put somewhere in the post itself, and that is that I don’t want my own experience of relapsing after a number of years feeling fully well, to install fear in any of you. All of our recoveries are different and we must remember that.
My aim of the post was to share my own story and to remind any one else on a healing path, to nurture your health and continue look after yourself (in a non fearful way!) long after you heal.
Self love, self care and time for rest, downtime and balance should be a lifelong thing, not just something we do in order to get ‘there’
Lots of love to you all, and thanks again for your lovely words. You are all wonderful
Emma x x ☺️
P.s. I need to ask my brother (who helps me do the techy side of this blog – I’m no good at all that stuff!) to enable me to reply to individual comments.
So please know this feature is on its way! I’d love to send you all a little response individually x
My beautiful friend, so proud of this post.
Keep going, keep inspiring others and always listen to your body.
Love oooooooooo xxx
My heart equally hurts and burst with pride reading this my lovely friend. This is the stuff you need to share. This is what is unique to your truth…. and look how many people have been inspired. Keep sharing your journey and your nuggets. All my love Carls xxx
Thank you for sharing this personal post. Healing certainly takes time and I think the greatest message for anyone to take from this post is that self care and balance needs to be a priority for us to live the kind of life we want and to be well. You truly are inspiring.xx
Very good article!
Thank you for your post, Emma. It’s so similar to what I am going through in terms of methods I took to recover from ME/CFS. I am constantly aware that I need to monitor my activity and the amount of responsibility I am taking on. I have a possible job title amalgamation coming up and I think I might have to pass, even thought there will be more money involved. Sometimes, saying ‘No’ is the best thing, I need to put my health first.
Health and wellness to you!
Thank you so much for this! It isn’t easy to put all feelings associated with the illness into words but you have done so really well. I am near tears reading this as so much of it rings true to me and you explain it all really clearly. I hope you continue to feel better. This is a super blog- well done! X
Absolutely loved reading your blog and would love to hear more from you, I’m jus learning and trying to accept this illness myself xxx
Although I am older than you, I can relate to your relapse and your spiritual journey. I have also experience the same situation as you. It is not about setting your mind in a way to make things happen, the soul, has also a saying and it is a strong saying. I, like you, have studied NLP, Coaching and read many spiritual books, and at the end of the day, I realized that all of these teachings take you away somehow from the connection to be with God, these New Age theories teach us to believe that we, by yourself, we can do miracles happen just by the power of your thoughts. My lesson with my relapse is that what I was missing was to become part with my creator, God. I learned that New Age methodology can be negative if we followed to an extreme, and it is worst when people around you use New Age methodology to criticise you because you don’t have the strong enough mind to get healthy, and it is cruel. Life journey is about our spirit and not the mind.
Thank you so much for sharing this information.
Hi Emma, thanks so much for this post, it was like reading an alternate version of my own journey with CFS! I am currently in a massive relapse after regaining much (but not all of my previously lost health). I returned to a three day a week music teaching job in a school. I loved the work but was uber concientious and a perfectionist and drove myself too hard, worrying inbetween times about what and how to do the very best job I could. I think the stress as well as the very long hours both had a detrimental affect. I lasted 6 months during which time I felt like I was finally going to have a “normal” life and a “career” – I was so happy (when not overwhelmed by my stress) and like you, I was embracing the enormous sense of freedom. My decline was less instantaneous though; In May 2014 I got a virus and had to have 5 weeks off work. I felt the symptoms of CFS exhaustion and thought “if only I could just sit still for 6 months”… of course I didn’t take that thought on seriously cause I had told myself “I no longer have CFS” – trying to be over it – because I felt a lot of pressure from society to not identify myself as having an illness. Anyways I’ve now been house bound and often bed dominated for a year and a half now… lots of symptoms, you know the lay of the land. I also have my mum caring for me which is a huge job. Anyway, thanks for your post, it has made me feel less alone and I’m looking forward to part two.
I just popped back in here and can’t believe how many comments have been left in recent weeks. Thank you so much for taking the time to comment lovely people, it really means so much. The fact that my own journey can help you on your own path, in whatever small way, makes the reason I started this blog in the first place all the more clearer. Emma x
P.s I still need to get my web designer (my brother!) to add an application where I can reply individually to comments. Thanks for being patient in the meantime until this actually happens!
I couldn’t have read this at a more perfect time. I started having issues when I was 15 and got much better through diet and spiritual exercise. I went to college and pushed so incredibly hard. I felt like I had to make up for so much after losing my high school years. The next two years after college I also pushed myself. I’m three years out of college, and I’ve started to see some symptoms come back and my doctor who has worked with me since age 15 has been telling me for the past 5 years that if I don’t take care of myself, I’m going to push myself even farther down the path of unhealth. I’ve been in denial. I thought my days of chronic illness were over. It’s a hard pill to swallow but I’m glad I’m learning now, instead of when I get worse. Thanks for sharing.
Hi BaLeigh
I’m so glad to hear that this post reached you when you needed it to. Its so difficult isn’t it, to actually stop and listen to our body’s, especially when we are high achievers and just want to just be out there in the world. I relate to your words so much, I too spent so many months in denial when my symptoms began returning…
At least you are noticing what is happening now. You can begin to listen to your body. If you slow down enough to listen, it will have so much to communicate with you.
Go Gently…
Emma x
Thank you for your positive words, I had been in remission for some years but I have had a relapse which have taken its toll. Yes, you are right, i did keep on going until I couldn’t walk and ended up collapsing again.
The fear of not getting well again is awful. It is so hard when people think you are a fraud especially family because on a good day you can get dressed and walk down the stairs instead of crawling up them. Thankfully I have some good friends who help me with my shopping,cleaning and jobs, I am learning to accept this is where I am now.
Bless you Judy. I so relate to all of your words here. Its sad we have to push to the point of collapse isn’t it? I totally understand that fear of not getting well again. I always tell myself ‘If I have done it once, I can do it again’, it is just so important we learn the lessons our body needs us to in order to do this.
Be gentle with yourself Judy.
Someone who may bring comfort and health ease anxiety a little is Kim D’eramo. She has an amazing Facebook page and does some brilliant videos. They’ve really helped me.
Sending love,
Emma x