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.