Stand’s ascent from the ocean floor

Originally from Seattle, USA, Stand now lives with her (cool, sweet, good) husband Grim and cat Furi in Bergen, Norway. She used to love hiking in the mountains. She just started a PhD when she realised that the flu she caught wasn’t going away, instead the symptoms were getting worse and worse as a result of her trying to push through. In May 2018 she had to stop her work and a year later she got the diagnose of ME/CFS. She is now supported by a treatment team that is convinced she will fully recover, it’s just a matter of time – and a lot of patience! She is already training to walk up the mountains again 🙂

What is your advice to people who are just diagnosed?

Be kind to yourself. Know you are allowed to rest and heal in whatever form that takes. Instead of rushing to figure out how to fix this, let yourself pause and really connect with yourself and your emotions. Do this even (or rather, especially) if you aren’t the type of person who typically can access your emotions. Do it even if you feel you don’t know how to do it. Do it daily. Journal or find a meditation app. Let yourself grieve, feel angry or feel whatever you feel. 

“I had to do what used to scare me: face and feel my feelings”

– Stand

Your nervous system is overreacting. It is stuck switched on to fight or flight. It is therefore giving you symptoms that are triggered by all sorts of ‘everyday’ stuff that your body used to be able to handle. Maybe it is even reacting to every single ‘everyday’ thing. You can learn to soothe your nervous system, and part of that may be learning to soothe yourself emotionally, if you don’t know how to do so already. 

I have found that when emotions arise and I try to push them away they end up increasing my symptom load. So I had to learn to do something that had always really scared me: simply face and feel my own feelings.

“My friends don’t take it personally when I repeatedly postpone socializing”

– Stand

Who are your biggest supporters and what did they do?

My biggest supporters include my husband, family and friends. My husband tries to keep me laughing and picks up some of the slack from what I don’t have the energy to do. He read through a draft of this post for me and would like me to also note that he is cool and sweet and good (which he is!).  

My family certainly roots for me and they try to contribute how they are able from afar. My friend-supporters are patient and understanding. They didn’t take it personally when I had to frequently and repeatedly postpone socializing for the first parts of my ME/CFS experience. They keep in touch with me regardless of my energy levels. 

My treatment team is a huge part of my support network. This includes a physical therapist who helps directly with hands-on nervous system calming techniques. Another PT, who works with loads of ME/CFS patients, who tailors methods directly to me that are designed to systematically increase my body’s physical and cognitive abilities. She is also one of my biggest cheerleaders, and that certainly helps. And, a therapist I connect with who really understands ME/CFS and helps me work with my emotional world. 

“Sometimes support comes from less obvious places, in my case my language teacher”

– Stand

One special support person that I hadn’t anticipated being so impactful is my Norwegian teacher. She was incredibly understanding when my illness made me stop our online coursework, and then when I came back she was fine with me only doing 10 minutes each weekday of online work (or even less, whatever I needed). And most importantly, our fortnightly conversations in Norwegian migrated naturally towards health, meditation, and the emotional aspects of life. She is always encouraging me to face, feel and talk about my feelings and I appreciate it so much.

I am so deeply grateful for each and every one of these individuals.

“I have been increasing cognitive activities with 5 min every 2 weeks”

– Stand

What were the key elements for your improvements?

I started out like so many of us do, trying as many things as I could find. I took tests to look for possible causes (up to and including an expensive open-MRI looking for craniocervical instability). I tried resting all the time. Many different diets and supplements (and yes, of course, celery juice!). Stress management and meditation. Chiropractic. The list goes on and on.

Ultimately for me the key elements were finding my baseline; pacing; a systematic (incredibly slow) increase of activities; and journalspeak (Nicole Sachs’ TMS technique). 

I am working on increasing my cognitive capacity at the moment. I have been building academic reading and other cognitive activities in increments of 5 minutes every 2 weeks. I am using those minutes to write this. I have built up my abilities to exercise/use my body for daily tasks in the same way, building in increments of 1 minute, staying at each new level for at least 2 weeks before increasing again. 

This is the way I have systematically developed my abilities to go for walks, walk up stairs, walk up hills, tolerate carrying heavier items and movement that gets my heart-rate up. A year ago at this time my body couldn’t handle stairs or hills at all and I got post exertional malaise (PEM) from anything that got my heart rate high. I was stuck in a cycle of resting, doing more than I could handle and crashing and then resting again. My crashes used to last months at a time. I now haven’t had a major crash in over 6 months. I am not where I was before I got sick, but I am slowly getting closer and closer. 

“When I have a bad day I journal about any sadness or anger I feel”

– Stand

What do you do when you have a bad day, or feel one coming up?

I tell my body my symptoms are not life threatening, but I acknowledge that they are uncomfortable. I (try to) surrender to how I feel in the moment – and respect that if I need to rest I need to rest. But that is not forever, that does not mean I will always feel this way, or that I am getting worse. It just means my nervous system is overreacting right now. I journal about any sadness or anger I feel regarding my symptoms. And then I rest or meditate or go ahead and enjoy some media – podcasts, tv, films, etc. 

“CFS forced me to learn to feel my feelings. They won’t kill me”

– Stand

What good thing has your illness and journey brought you that you would not have had otherwise?

I never knew how to self-soothe in a healthy way. I have an eating disorder and I used food to self-soothe a lot. I also used other distractions so I could push away my feelings (endless social media scrolling, anyone?). Or I used over-intellectualization – I was really good at knowing something intellectually but not being able to ‘believe’ it emotionally. 

Now I am in the process of just doing a practice of journaling 20 minutes a day in a visceral way about what I am feeling (journalspeak). And in a hands-on way my nervous system is learning it is safe to feel the feelings I was too scared to feel all my life. They will not kill me. Just as ME/CFS symptoms will not kill me. Nothing is gonna kill me until the very last thing (paraphrased from John Green). In the meantime, I am learning to be kind and nurturing to my emotions and give myself the permission to feel them. I don’t know if I would have ever learned how to do this if I wasn’t forced to by ME/CFS .

What is your go-to comfort food?

Lately that would have to be a thick cut tortilla-strip chip (similar to fritos, but they don’t have fritos in Norway).

What is the best and worst movie or series you watched while you were ill?

I must admit to some serious reality tv watching… which my husband also got into including the Norwegian versions of Ex on the Beach and Paradise Hotel. The Circle was one of our favorite guilty pleasures, we watched every version (several different countries) available on Netflix.

As for arguably ‘higher quality’ shows… DARK, The Watchmen, Chernobyl, Work in Progress, High Maintenance, Lovecraft Country, Beforeigners (Norwegian, but available on HBO with English subtitles) and Haunting of Hill House were high on the list. Unfortunately, Batwoman and Warrior Nun ranked quite low (I was disappointed because I am always hungry for good shows with female leads and diverse casting). Oh, and Wanda Vision was probably the most fun new show I’ve watched recently.

Can you share a quote, cartoon or inspirational message that cheers you up?

Here’s three:

Fall 7 times, get up 8
– Japanese Proverb

You don’t have to be comfortable to be safe
– Nicole Sachs

If any one person can recover from this, so can I
– I think my physical therapist may have come up with this one

“CFS is like being on the ocean floor in a heavy old fashioned diving suit”

– Stand

If you have to come up with a metaphor for CFS what would it be?

ME/CFS is like being in a heavy old fashioned diving suit on the floor of the deepest part of the ocean. You are weighed down by all the metal in the suit, it makes every moment leaden. The pressure of the water pressing down is crushing you. You feel all alone, isolated, life moves on without you on the surface. It is so far away. It is easy to forget that you can make it back to the surface. But you can. Ascent may have to go very slowly – with many pauses to avoid ‘the bends’ – but you can make it.

Please share a picture of you in your happy place

My happy place used to be traveling… and I look forward to visiting that happy place again when it is a safe and healthy choice to travel. I am glad to say I now also have a happy place to return to again and again near at hand, cuddling with my furry friend Furi. 

Clockwise from top left:
Enroute to Amsterdam; with a friend at Sverd i fjell in Stavanger; on my sofa cuddled-up with Furi

If you want to check out Stand’s ME/CFS recovery progress, you can follow her at:

https://www.instagram.com/i_can_stand_it/

or, if you need a distraction from ME/CFS and would rather just watch her cat order her and her husband around using buttons, follow:

https://www.instagram.com/furi.no/

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