Dear Louise:

A general type of advice, one that will fit your share as well as any other, is in the Serenity Prayer, this part: “grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”.

You shared that you have been ill since your early 20s, 12 years going, and you are now in your mid 30s. I understand that your illness limits your ability to walk (your are housebound, and you mentioned a wheelchair on another thread). You can read and write only for short period of times.

You wrote: “I feel like time and the world is passing me by whilst everyone else I know is out living, working, travelling, socializing, raising a family”- –

There are plenty of people who are not working, traveling, socializing or raising a family. There are people who suffer from your particular illness or from illnesses similar to yours, young people like you.

Perhaps one way to go is to get to know people who share your struggles, listen to how they live their lives?

anita

Dear Louise:

Would you like to share more about the nature of your chronic illness? I wonder what the prognosis is, for one.

anita

Dear Louise:

1. Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME) is a medical condition characterized by long term fatigue… “the cause is not understood…Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some case” (Wikipedia)

2. Fibromyalgia (FM) us a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems and troubles with memory… Fibromyalgia is frequently associated with depression, anxiety.. “The cause of fibromyalgia is unknown… The treatment of fibromyalgia can be difficult. Recommendations often include getting enough sleep, exercising regularly and eating a healthy diet. Cognitive behavioral therapy may also be helpful. (Wiki)

3. POTD: Postural Orthostatic Tachycardia Syndrome- a condition in which a change from lying to standing causes an abnormally large increase in heart rate. Symptoms may also include lightheadedness, trouble thinking, blurry vision or weakness. Other commonly associated conditions include irritable bowel syndrome… fibromyalgia. “The cause of POTD is poorly understood… Treatment may include … cognitive behavioral therapy… About 90% improve with treatment. (Wiki)

My input: the note on each of this condition regarding causes, “not understood/ poorly understood/unknown”, lead me to think that the cause or causes are strongly tied to anxiety. Anxiety is very powerful and leads to many symptoms and many combinations of symptoms, responsible, I think, to most psychiatric diagnoses and many other diagnoses.

All symptoms and all diagnoses are physical, whether detectible by existing medical tests or not. Anxiety in itself is physical. All that we experience is physical as nothing can be experienced without our physical brain/body.

When anxiety is not the cause, it is a consequence and still, has to be dealt with. In any which case, attending to, managing and healing anxiety as much as possible is helpful.

Cognitive behavioral therapy (CBT) is mentioned as helpful to few or many of the people suffering from these conditions, leading me again, to think that anxiety is indeed a strong element in these conditions, be it as a cause and/ or a consequence.

Overall, there are things you can do, in regard to the “courage to change the things we can” part of the Serenity Prayer. There is hope. I am sure you tried or still are practicing healthy  nutrition, exercise, and maybe you tried psychotherapy as well. Maybe there are new approaches you can try to the same things you already tried: nutrition, exercise, therapy and other treatments.

Just because any one thing did not work before, or did not work adequately before, does not mean it will never work. And any improvement is better than none.

anita

Anita,

I’m new to this forum and not sure how to reply to your post directly, but your response to Louise regarding her chronic illness has motivated me to join this forum for the sole purpose of responding to your post. I have not fully thought through what I want to say and don’t have much time but feel it is important you know that you are 100% incorrect and I don’t know where you got your information from about anxiety and depression causing M.E./CFS and/or fibromyalgia but it is completely unfounded. It is A SECONDARY SYMPTOM DUE TO THE ILLNESS AND LOSS OF ABILITY TO FUNCTION NORMALLY ON A DAILY BASIS AND THE PHYSICAL PAIN, LETHARGY AND IMPAIRED EXECUTIVE FUNCTIONING AKA BRAIN FOG CAUSED BY THE ILLNESS. ANXIETY AND DEPRESSION ARE CAUSES OF AILING PHYSICAL HEALTH and LOSS OF THE LIFE A PERSON ONCE KNEW. IN THIS CASE NOT THE CAUSE BUT RATHER A COMPLICATION DUE TO THE SIGNIFICANT NEGATIVE IMPACT ON ALL ASPECTS OF A PERSON’S LIFE. THERE’S NO FACTUAL EVIDENCE BASED ON MORE THAN A SMALL STUDY THAT HAS NOT BEEN ABLE TO BE REPEATED THAT CBT IMPROVED THIS ILLNESS BY 90%, THOSE NUMBERS YOU SITED ARE RIDICULOUS AND COMPLETELY UNFOUNDED. I will not argue that any kind of emotional and mental healing helps coping of physical illnesses but again it is not the cause of CFS OR FIBRO. It sounds like you googled it and then repeated something you read. I have living with and doing research on the cause of these illness for more than 10 years and again, although being able to learn ALL kinds of coping strategies to improve quality of life is helpful, it is in no way a 90% improvement. That would be considered a cure. And there is no cure. It is indeed a physical illness and just like anything that causes a person’s life to change drastically not by choice and without control over it, depression and anxiety is common as a secondary symptom. I feel I am repeating… Just to be clear… Please do not offer advice on a subject you know nothing about and make a person feel as if it is all in their head that causes this physical illness. THIS IS THE ONE THING THAT IS REPEATED AS WHAT NOT TO DO!… THAT IT IS NOT”ALL IN OUR HEAD” and that notion is insulting, belittling and nothing more than an old wive’s tale.Yes, again, mental/emotional stress etc can manifest itself in physical ways but CFS and fibro is not one of them. Yes, again, stress management and particular coping strategies help but are not a cure. If it is, it is not true for CFS, a disease at the cellular level or fibro, an autoimmune disease. I suggest you watch the movie “Unrest” on PBS. And Louise, there are many books and websites that teach pacing and getting your body into the Relaxation state, etc, to help improve symptoms such as “The pain survival guide” and many more, please contact me if you need any. Do not listen to ANITA. She is ignorant and promotes the stereotypical outsider who has not personally experienced the pain of chronic illness, especially CFS and/or fibro. Respect a person’s struggle and show compassion. Unfortunately empathy is very hard for healthy people. Understanding these illnesses is near impossible unless you have felt it or seen it for yourself. I have been called a drug addict and have had family members try to explain it away in the same manner as if I have some kind of control over being affected by it and airing in the first place. I myself have tried to find explanations for the cause and done extensive amount of Mental and emotional healing work.I have control in changing how I live my new found life differently because of this illness and I have control over my own happiness even with the devastation of not being able to live normally and loss of dreams. There are many way mental and emotional support as well as CBT but curing the cause, the ILLNESS and CBT itself, is not one of them. Overactive nerves, viruses, trauma, malfunction of converting ATP to energy at the mitochondrial level, etc etc are causes. Little research has been done because people don’t die from it and we are money makers for pharmas and drs but more is being done. We cannot do charities such as walks to raise money because of the nature of the illness. ##Millionsmissing is no joke.

Louise, i can relate to everything you wrote. Plz.contact me if you need resources or support. I understand all the aspects of relationship complications, etc, I’ve been through it all and have an amazing support group that relate to everything you are going through. I’m sorry for your struggles, you are not alone.

Meredith

MeredithSLP@gmail.com

Hi Louise,

We have so much in common!  I started getting sick at 20 with Hashimoto’s. Eventually I was diagnosed with CFS, and Fibromyalgia and POTS.  I also got worse to the point that I could not stand up and was in a wheel chair.   I also was allergic to all sorts of perfumes and chemicals.  I started to get discouraged because I was housebound and my life had become so small (I was also a big traveler and have been to over 30 countries, so like you, being house-bound was very painful for me.) Doctors’ were no help and what was worse, when they don’t know how to help, they often treat you as if it’s all in your head.

Here’s what worked for me:

Mentally/Emotionally

I started watching a lot of Eckhart Tolle videos on YouTube.  I actively chose to move from a state of resistance to a state of acceptance.  This is not done from burying your very understandable grief about the situation. I, too had to deeply mourn the life that I wanted to have, but lost.  You have to feel the emotions.  I sit in my tub and talk to my grief, despair, frustration, etc. and I listen to what each emotion has to teach me, and I offer comfort to it like one would comfort a small child. I have also spent a lot of time processing traumas that I believe contributed to my getting sick (my illness is epigenetic, a combination of genes, viral/bacterial exposure, and trauma/mold exposure is what I believe activated those genes).  Emotional processing, for me, is something that needs to be done on an on-going basis as there are always difficult emotions that come up around being so sick.

Meditation, including guided meditations and hypnosis found on YouTube has been great for me.  Even though there may be very little spaciousness in your external life, through meditation, you can find more space in your internal life.

Music is a life saver.  I use music that I love to comfort me when I need it most.  Also, if you do get to a point where you can read, I recommend Jaques Lusseyran’s Let There Be Light.  It is an autobiographical account of a blind french man who was integral in the French Resistance and was put into a concentration camp.  Though all that sounds depressing, it is an incredibly moving, light-filled story and his recovery from several life-threatening diseases that hit him in the concentration camp is a testimony to the human ability to heal.

Gradually, I started to change my mindset from a “Why me?” mentality to a mentality where I am no longer a victim.  I may not be able to choose out of my illness, but I can choose how I react to it.  Before I got sick, I was cursed with severe perfectionism and caring too much what other people thought of me.  This illness forced me to let go of both and become more of my own advocate, and more accepting of myself.  Being sick is such a drain on emotional/physical resources that I realized I needed to make taking care of myself a priority, and I have.

There are good days and bad days, there are jumps forward and times when I backslide.  I recognized that when I am projecting myself into the future, imagining life at the same level of pain forever, my resistance would become too much, sometimes to the point of feeling suicidal.  But when I said to myself, “I don’t know what the future will bring, I only have to find a way to have acceptance in this present moment,” each individual moment became easier to deal with.

Physically

Listen to your body!  That is the biggest advice I could give.  At first, as my illness progressed, I spent a lot of time dissociating (cut off from the inner sensations of my body) because otherwise, the pain was too much to bare.  But I realized that I had to make friends with my body and start listening to it if I were ever to start to heal.  At first, I started simply by watching my stomach fill up slowly as I deep breathed and then watching the exhale.  Eventually I learned to talk to my body the way I talk to emotions (this is best done under mild-hypnosis or after meditation because you can be relaxed enough to get answers from your subconscious mind instead of your conscious mind.)

I started doing an elimination diet.  I cut out wheat, sugar, corn, dairy, and a whole host of other foods.  This led to me becoming better at identifying my own triggers-figuring out what made me feel better and what made me feel worse.  I recommend keeping a food/medication diary, or making note when you have a bad day and some possible contributing factors.  Eventually you will start to hone in on what triggers a flare-up, and when you learn to avoid those things, life does improve.  I can actually walk around a supermarket now for about 15-20 minutes, though I still struggle with standing in lines.

Be your own healthcare advocate.  The elimination diet is what led to a big discovery.  I had cut out a whole host of foods but one day I decided to make myself a ‘healthy’ salad, complete with spinach, raspberries, strawberries, blackberries, pecans, and vinaigrette.  My face swelled up and my body felt like it was on fire.  I googled around until I discovered that I needed to be on a low-histamine diet, and that led to the discovery that what I had was not just fibromyalgia, but was a thing called mast cell activation syndrome (MCAS).  With mast cell activation syndrome, pro-inflammatory cytokines and histamine and many other nasty chemicals are released into the body by mast cells so that you basically tend to feel as if you have an inability to stand, a stomach-flu, a head-cold, a migraine, and severe pain most of the time. While you might not have the same thing (you didn’t mention chemical allergies, and these often, though not always, go with my diagnosis) the fact that you have POTS is a sign that you might, in fact, have MCAS, since POTS and MCAS often go hand in hand. Getting the right diagnosis, for me, was huge because I stopped wondering if it was somehow all in my head.  Also, when I read MCAS blogs I started to recognize shared triggers and better hone my self-care. Plus, while it was initially hard to get a new diagnosis, I was able to see that there are people who have learned how to better manage their symptoms and that eventually made me feel more hopeful that this is something I may be able to learn to live even better with.

Also, physically speaking, if inflammation is any sort of a problem for you, I highly recommend a practice called ‘earthing.’  You can google studies on earthing to see how good it is for the body.  I basically just go outside for a little while and sit barefoot in the grass.

I have loads more tips, if you want.  But I am also happy to just commiserate.  I know how brutally hard it can be to be that sick (I have a host of other symptoms I didn’t even mention) and it is so discouraging to see others living a normal, happy life when your life will not be that easy.  While people who aren’t sick might try to offer platitudes and may never actually fully understand how painful it is for you just to navigate life, there are people who do understand.  I am glad you are part of a Facebook community.  I hope that you can continue to find social support online, even if you can’t go out and make new friends.  I am also always happy to listen or talk.  I don’t give out my email online and I understand you might not want to either, but I will watch out for your comments here, and if you want to leave your email, I’m happy to correspond.

I hope and pray that you will find some relief.