The Loss We Experience When We Have ME/CFS, Fibromyalgia or MCS
CLICK THE VIDEO BELOW TO LISTEN TO THE VIDEO BLOG NOW!
Please Share & COMMENT BELOW:
ME/CFS, Fibromyalgia and MCS are such a severe illness that inevitably it affects every part of our life. In the recovery stories, sometimes people talk about the grief they felt and the stages they went through, from denial to acceptance and grief to non-acceptance.
What are the losses that effect you most?
- Friendships?
- Hobbies?
- Social Activities?
- Sense of self?
- Career?
- Family & close relationships?
- Sense of independence?
- Others?
And what have you done to deal with this sense of loss?
Please leave your comment below!
Ive been struggling with fibro for over 2 years now. I rode a bicycle 25 miles daily and walked a minimum of 6 miles daily. For me, no longer being able to do these types of activities has been the most difficult part of this disease. I have literally lost everything. Fighting for my SSI has left me homeless now, for going on 15 months. I am no longer able to work, have lost “friends” and even “family” I’ve always been a very positive individual, but even I struggle now with staying positive. it takes effort every day, to find that person in me, who I know is in there. I have a court date for my SSI finally, in January. I know having an income will do much for my happiness. Staying positive is not easy, but is a must, if you are to survive any chronic pain syndrome. I am learning, it is OK to ask for help, something which does not come easy to this strong minded independent ole gal. .
Take care and be strong
SM
Hi Sue – thanks for your comment.
Yes, it’s a tough road when we are chronically ill. Life can be challenging at the best of times, so being ill just makes everything else worse.
The financial impacts of having FMS/CFS/ME/MCS are severe. Well done for managing to ask for help where it is available, most of us find that a challenge to do.
I hope you haven’t given up on recovery and are enjoying the recovery interviews.
Very well said. I think we all fear our future. Will we be ok if we can’t make an income to suport ourselves. By the grace of God go I. I try to take care of my health and keep pushing forward. And purposely living the life I have to live. I Can reach out to others.Making a difference in their life. I Can enjoy many of the pleasures of life. I Can work on Helping people become aware of this challenging disease, that we so desperately need a cure for. I Can encourage myself and others to not give up. I so much appreciate every ones stories . It helps me so much. Thank you every one for sharing. .In closing I want to wish every one of you a pain free day. I don’t ever want to give up or give in to a life not worth living. Life has so much to offer me in-spite of my illness. love and hugs to all.
I feel the loss.Greatly. But I choose To Live This Life I am Given.. It is so hard for me to let go of the fact that, I Can still live this life that I so passionately live. That means a lot to me when I think about every one that is a part of my life. Thank You for letting me tell a little bit of my story.
Things I feel most sense of loss about? In general I think social life, friends. Very very few have been the friends who understood. Even yesterday I was speaking on the phone to a long term friend and she was not getting what I was saying to her. When I explained I wasn’t well she took a breath and started talking about us going to the cinema and then, was it my thyroid or tge menopause. Its the same with doctors, its as if my words can’t be heard, an enquiring look and then back to the “real” conversation. Also I miss tge freedom of walking in the hills and the fresh air. Also things and parts of my life lost in the past, the dogs I rehomed , the degree I didn’t finish. The career that never flourished. I lost a life.
Thanks for sharing Patricia – Fibromyalgia and ME/CFS is often so all encompassingly aweful!
But the people who come out the other side feel happier and more connected to life than before they even got sick.
I hope you are keeping up hope for a better future. Keep listening to the recovery interviews!
🙂 xx
I was diagnosed with ME following 2 other diagnoses. My body had become so exhausted and fatigued from being so poorly for such a long time, it could no longer cope. My life completely changed, from being a very active, social being I was becoming nearly house bound, and ended up having to give up a job I’d loved, following a demotion due to my poor health. When I tried to go out and do anything it would take several days to get over it. I’d find myself sleeping for 12 hours, waking up and going back to bed for more sleep.
To get therapy was a bit of a battle. My GP asked what I wanted from it. In my ME hazed brain I couldn’t answer, but went home and managed to think about it and wrote an email. It stated that I just wanted to learn how to manage my illness and be able to have a life and be able to work.
Fortunately for me the therapy worked, I can now do this. Initially, I was getting very depressed about the hard work it was to do this and found it exhausting.Since receiving therapy, my condition has improved. I can have a life, if I manage things carefully. I can work, albeit shorter part time hours and I have to constantly watch my body reacting to things and manage my situation.
Now, I feel lucky.
Jules, that’s very cool! To go through this and have the attitude to see yourself “feeling lucky” – very positive – well done!
🙂
Hi Jules, Don’t give up. I loved your message. So pure and true. We truly have to work with what we have to work with. Every one is so unique. But Together and our own life force we have a great purpose to our lives..
I’ve had Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) since 1992 With IBS since 2008, Recent Diagnoses of Fibromyalgia 2 years ago. The unfortunate Decline of physical, cognitive, executive, or emotional functioning through the years has been a progression of what is otherwise known as “invisible” chronic illness, that negatively impacts one’s quality of life…this does not include other co-morbid conditions such as vestibular migraines with aura. I do what can be done when and how it can be done, embracing my limitations, paying close attention to my body and choosing to attempt to stay positive even when ability is limited.
Thanks for your comment Michele! 🙂
Dan,
Fibromyalgia really steels your quality of life. I have trouble
With the cognitive issues, physical limitations and just feeling
Sick most of the time. The depression seems to be part of the
Fibromyalgia flares. I hope I can find the key for my recovery.
So true Joy.
It’s interesting that you connect the depression to the flares.
Do you think it is because the experience of the symptoms and feeling horrible with Fibromyaliga are so depressing, or do you think it is something more intrinsic. In other words, even if you don’t feel overwhelmed by the flare and generally in an OK headspace, do you feel when you flare that you fundamentally shift into depression?
It’s hard to judge how much of the depression is mental and how much has a physcial driver – of course it’s always both in people, but I am curious to hear your thoughts.
Dan
I do think that the flares are connected to an increase in a particular form of depression. I think anyone with chronic illness is at risk for depression but when I get a flare I can physically feel a wave of depression and sometimes extreme sleepiness. When the flare lifts I feel happy even if the pain lingers.
I think the flares cause depression because were are not sure what our future holds. We get scared and a little hopeless. But we have to think about all those in our lives that are impacted in our life. Believe me when I say you matter to many people. Some you may not have even met yet.Please don’t ever give up.
We all feel the loss greatly. But I Can’t give up. I may have to rest. I may have to cancel. I may have really bad days. But I can’t give up.
Ok I watched the video. You are Fabulous Dan, We all suffer. But recovery is a decision we all have to make to live by. We need awareness and a cure. Our collective storories bring us closer to a cure, I Hope. love and hugs. Sherri
Wow now the comments r there. Not very computer savvy. love to all.
I had to leave behind a partner and his family, my friends, and so much more when I had to move away from a place that made me even more ill (living next to an alumina refinery). Because of my fatigue and other illnesses, I’ve seen many friendships dissolve before my eyes. People don’t understand, and it seems that many can’t be bothered to understand and maintain and friendship – too much work, I guess. I lost my energy and motivation to be a force of positive change in my community. I lost the ability to make an income and be totally self-reliant. I’m no longer able to travel in the manner that I used to.
But there is also so much that I have gained on my illness journey. I have a deeper compassion and empathy for others going through difficulties. I’ve learned how to put together a website and use social media to help others who suffer. I have more freedom in my day, so when I’m feeling okay I can do things I never had time to do before (bake, write, watch movies).
And I am always mindful that there are so many out there who suffer more than I ever did and who have lost so much more. I vow to be grateful for my life…as it is.
Hi Cam
It is very difficult to keep friendships going, because even the nicest people find it difficult to understand and your activities become so limited.
But I think it is fantastic how philosphically you review your journey and it shows a great sense of personal growth. Gratitude is a powerful emotion to shape our lives!
Thanks for your excellent comment.
🙂
I have had FMS for over 20yrs now and nearly all the muscles in my body are solid and I need to use an electric wheelchair. I lost the job I loved more than anything, friends and family. However I have two wonderful children. Unfortunately one has Ehlers Danlos Type 3 Hypermobility with Fibro spasms in her back. She is 21 and just got her first proper job, working in a GP’s surgery, with working towards an NVQ qualification in management and admin and also works as a Tech for a rock band and she tries so hard to carry on through all of the pain she suffers. My son has aspergers and is now in college working for a degree in ICT. He is 17 and still attends his residential school and goes to college from there and comes home on Thursday’s. When he was younger we went through hell with him and trying to get him diagnosed took 5yrs and him being out of school for two years.
The reason I have put all this detail is that I have done this alone. Unfortunately I went through 2 domestic abuse relationships. In 1998 I was living with my partner and I was then diagnosed with FMS and got told that it wasn’t a debilitating condition. In 1999 I separated from my partner and I have been on my own since then. I didn’t have any real support from my family and because of his behaviour I couldn’t take my son to places and as a result they didn’t come to me and I never really see them. My mother passed away in 2005, but she wasn’t that much help either.
My proudest thing that keeps me going is that I have single handedly brought up 2 wonderful kids, who are never in trouble and have worked to get the things they want. I don’t feel that if I had been in a relationship I would be able to say that. No matter how much pain I am in and how much I have deteriorated, my children understand that I am always here for them no matter what and between the three of us we have a strong loving family.
Vikki
Hi Vikki,
You have done wonderfully to be there for your kids – but now it’s time to look after yourself and your health as number 1!
recovery is possible even after 20 years, although of course it can become a little trickier, especially the psychological aspects of the illness. But I have seen people do it before!
But I like I say in CFS Unravelled – it’s all about having an ACTION PLAN!
Good luck
Dan
Hi Dan, I’ve just finished reading your book. It resonated so strongly with me. 2 years ago I started having panic attacks which soon turned into severe agoraphobia. To me this seemed out of the blue. I was healthy, excercised a lot, ate well, had a great job, loving family. Of course it was all ‘Potemkin’s villages’, a facade. 12 months of counselling with an awesome clinical psychologist revealed the chronic stress and emotional turmoil that was simmering under the surface like a dormant vulcano. Luckily, my counsellor knew about CFS and Fibro and started pointing out the symptoms that have started to make themselves known. So instead of fighting this I prepared myself for the inevitable. I learned to meditate, I completed mindfulness course, took up gentle yoga, learned to say no and faced my demons head on. But I had to lose things on the way – toxic family members, so called friends, my social life became non existent and like you said I feel standing on the fringe of things. But I also found and mended a lot of things, started a new job, travelled to Europe on my own. I’m slowly discovering the true me and am still learning to fully embrace it, together with my aching body, unrully stomach and foggy brain. I call it climbing my own Everest! I’m probably still at the base camp though :). Thank you very much for sharing your story and bringing us the recovery stories from other people as well.
All the best from Perth
Thanks for your positive comment Maja. I am glad you have managed to see through the confusion of experiencing ME/CFS and Fibromyalgia and turned your health around. Hopefully I get to publish your story one day! 🙂
Hi Dan…I feel like MCS is really a lot different to ME/CFS/Fibro. I know what caused it. Synthetic/toxic chemicals and a build up over the years, plus a genetic factor(Mother and sister)25 yrs since I became debilitated. 5 yrs of doctor/specialists/alternative practices until a diagnosis with Kinesiology. From then on, I cleaned up my lifestyle. I practice avoidance and live a fairly isolated life. I am extremely well..until I expose myself to perfumes, scented products and all the rest. I have tried many things over the yrs to ‘get over it’ but they don’t stop my reactions. I have accepted my life as it is now and am happy and contented, despite losing nearly all my friends and a lot of my family. I enjoy and am grateful for my life every day. My thought is always that my life is not better or worse, just different and I just glad I have one at all.
Hi Jennifer,
I am glad you have managed to be happy and contented.
You are of course entitled to your opinion, which undoubtedly is based on a lot of experience.
I do not share your view and do believe that MCS shares the same root mechanism as ME/CFS/Fibro.
Have seen people recover from severe MCS using the same techniques, sometimes with some added specific strategies. In some ways, MCS is the purest form of the dysfunction!
In any case, thanks for your comment. I hope the site supports you and I applaud your positive outlook.
The main thing I’ve lost is my social life and/or some of my friends or aren’t as close with some, I shut out a lot of people and suffered on my own or didn’t want anything to do with anyone. I also had to deal with a lot of difficult people (which is saying it politely) at a job I worked at.
I understand how you feel Jared. When we are sick, everything becomes much harder to deal with. Hope you find that the VIDEO EXPLANATION and recovery stories support your return to health.
Personally I feel I am very much in grief. I have lost the things in life I depended on for my happiness. I have experienced long term anxiety and depression and used exercise and distraction to keep myself on track. That has all been taken away from me. I know I need to reach a place of acceptance and to be grateful for what I have to progress, but am really struggling to get there. So far I have been lucky with family and friends, but I suspect this won’t be the case longer term.
In the beginning I was concerned about all of the things you listed and struggled greatly with them until I was diagnosed with Fibromyalgia. Once I knew what I had and that I was not going crazy I set about getting on with my life and I hope others are able to do the same.
One of the FDA approved meds for Fibro has helped me tremendously as well as keeping my blood pressure at an acceptable level as it was going haywire with being in constant pain. I am now back doing all the things I love except swimming as humidity is a trigger for me and an aquatic centre is not a good place now.
However, the thing I miss the most is spontaneity. Even though I am at about 80% my old self everything has to be planned and balanced out now to ensure I can keep doing these things that I love.
The bad days still happen quite frequently and some days I just want to scream “why me and why this horrid illness” but I try and turn everything into a positive … I used to never nap but now I have to and I really like napping haha, If my body aches too much to be active I take the time to read my accumulating pile of comics / books etc.
I wish all you good folks out there the best – keep fighting that good fight y’all. Even in the last few years I have been dealing with this condition the awareness of the illness has grown so much. I hold out hope that they will find the cause be able to remedy this for all of us.
Kia Kaha (which where I come from means Be Strong)
Thank you so much for your comment.
I hope the “WHY ME” question is somewhat answered by the video education series!
Any improvement we experience has to be a good thing and move us in the right direction. I encourage you to keep learning more about the root mechanism of the illness so that you can build on your results and go beyond trigger reduction (through avoidance) towards trigger extinguishment.
Thanks for sharing!
My Naturopath said that my life as I knew would be forever changed with CFS. She stated that I needed to be ok with what is now. I fought , kicked and screamed , and pleaded with my body to just be as it was before. A lot of why why why ME and internal anger. I wasn’t accepting the fact that I couldn’t go back. During my New Year’s yoga class we let go ( surrender ) to things that weren’t serving us. I let go of the internal fighting – the anger – the why ME – it was draining me of what little energy I had. In reading your blog about loss, it occurred to me what had and is happening now is I’m allowing myself to “grieve”. Yes grieve over my old self and say goodbye – to make room for the new self – to allow recovery to become possible. I don’t know who wrote this but for my recovery I am keeping this close to my heart. “Maybe the journey isn’t so much about becoming anything. Maybe it’s about un-becoming everything that isn’t really you so you can be who you were meant to be in the first place”.
Certainly life changes with ME, regardless of whether we recover or not. If you listen to the recovery stories, you always hear about how people describe how they changed as people from the experience. Remember not just to “grieve” the old self, but also to welcome and celebrate the new self, especially as you move towards recovering your health again.
I’ve been fighting Chronic fatigue and fibro for three years now. I tried a gluten free diet but it didn’t help much. A month ago, I went on a Paleo diet- basically no sugar or milk or any grains. I feel like a different person even though I still have high inflammation markers. I’m so full of hope for the first time and my depression is basically gone. In ONE month!
Hi Elaine
Diet can be really important, but it is just one of several key strategies to use at the same time.
It’s my view that whilst supporting the body to heal and reducing physical stress with an improved diet, brain training is also key as I discussed in my latest blog on neuroplasticity for ME/CFS & Fibromyalgia recovery. Trust you find that helpful! 🙂
The loss of the social me I come home from work or other outings and go online and support my friends via Facebook & Twitter and advocate for the amazing things my friends are doing with their local businesses but I know I have to manage the Fibro or it will rule me. ?
Indeed we can end up feeling quite isolated when chronically ill. I hope you find ways of taking little steps forward to recover your health and that the explanation videos help you to perhaps take your first steps.
One thing I have lost is the ability to tolerate sound. I wish you had a transcript of the video. I’m sure it’s great.
We are working on transcripts. Many of the recovery interviews have them now.
Have you seen them?
I’m going on about 29 years with fibromyalgia. Had life saving surgery three years ago, now dealing with other chronic illnesses. I have overcome the loss of some losses by learning to ask others for assistance. This is very difficult as I do historical reenactment of years between 1620-1930’s. Now I have to rely on friends to help me set up and packing up. Until the pandemic shut us down, I volunteered at the Michigan Historical Museum. Learning to rest more or just saying not today.
So much loss with these illnesses–it makes me sad to read all the stories, but at least I am not alone in all this. I have also lost many friends and work colleagues who I thought were friends. After I went out of work, I never heard from most of them ever again! It’s like they consider my illness to be a failure or something. Honestly, I’m not sure what they think, but it is strange with people you worked with for almost 20 years. I did lose my career as well, but that doesn’t hurt as much as the loss of the people. I have learned that being out of the intensely demanding job with a horrible boss is a blessing at this point. Even when I get well, I will never go back to it.