Surviving Low Mental Health Days with Severe ME

While there are a plethora of posts online guiding people in feeling better on a "low" or "bad" day, surviving depression days with severe ME often does not allow for such a broad range of options. Especially as inflammatory depression is often a symptom of a crash. Here are so more unique ways to help with depression in severe and very severe patients.

***Personal disclaimers***

I am not a mental health professional. The following advice is from personal experience and community knowledge.

I am in therapy and my depression is well controlled. I have a network of friends and family who take responsibility for my safety and I never am home alone.

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Sensory Control

One of the depressing things about ME can be the loss of ability to control our environment and the constant pain and negative sensations. We can counteract these things with positive sensory experiences we can control such as:

Deep Pressure: Hugs/cuddles, weighted blankets, tightly wrapped sheets, compression socks

Hot & cold: Heat packs, heating pads, electric blankets, hot water bottle, cold packs, cool gel packs, cooling gel mat, heat / AC (lower back or pelvis for general heat use unless there is a specific pain spot and eye masks or back of the neck for general use cold packs)

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Inflammatory depression

Many people with ME and fibromyalgia report that they have depression that worsens with crashes and inflammation and improves with NSAIDS and Anti-inflammatory medication. Good options to try include…

Over the counter

-Aspirin / Disparin

-Ibuprofen

-Naproxen Sodium (sometimes prescription)

Prescription

-CBD

-Indomethacin

-Prednisone (can give false energy in some)

As a bonus, these medications also all reduce pain which is often a large contributing factor to ME depression.

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Mantras / Helpful thoughts

General:

This too will pass.

The only way out is through.

I am surviving.

If in a crash:

I have survived this before and I will again.

I can get through the next 5 minutes. (Adjust time as needed)

This crash is my body protecting my vital organs by slowing me down. My body is not against me.

Not in a crash:

I have been worse and survived.

My brain still belongs to me. I cannot control my body but I can control my thoughts.

Surviving is my full-time job. When it is hard it means I am working harder.

If you have loved ones:

There are people rooting for me to survive.

I will keep fighting for __name__.

If you can still move:

*wiggle toes* My body is mine, I will protect it by resting.

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Distraction

Many options for distraction can be difficult or impossible to access depending on severity. Here are some options and things to keep in mind.

Reminders:

-Stress is often as detrimental as screens. If your phone is the only option besides stressing watch those silly videos. Even if you know it is not restful. Forgive yourself for it.

-Minimize harm. Choose the activity that leaves you relaxed with the lowest energy expenditure.

Activities:

Sleep

-can be aided by medication)

Meditation

-be cautious of rumination and anxiety, if overtaking choose something else

-Try using the mantras from before

-Try listening to rain or ocean noise

Counting

-See how high you can count

-Count backwards from 100

-See how high you can count by 2s 3s 4s etc.

-Count skipping every multiple of 3 and 5 (or similar)

-See how many times you can double (1 2 4 8 etc.)

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Distraction continued

Audio books / podcasts

-Choose something familiar that you can follow

-Consider children's books / YA you read when you were young if you struggle to stay engaged or follow plot

Youtube / TV / movies

-When in high pain shorts or tick tocs can be best as they rapidly distract

-For minimum exertion try watching old series or movies you have seen many times

Social media

-Try simply searching for "cute _favorite animal_" (bunnies, pandas, puppies, kittens, otters etc.)

-Can use support groups like 25% ME group on Facebook as journaling

-Try to avoid reading about topics you find upsetting BUT sometimes focusing on other people's problems can help. Learn which side works for you.

Stim Toys

-Play with simple objects like putty, finger traps, silicon bubble wrap, folding puzzles, stress balls etc.

-If you don't have the ability to purchase items or wait for them to come some everyday objects you can use are

--Hair ties and rubber bands

--Toilet paper (fold each square, twist a short length, rip into little pieces over a towel or trash bin)

--Loop of string

--Clicker pen

--Ice cube

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Pain survival

Some tips for surviving waves of pain:

-Squeeze something (a hand or stress ball is best)

-Pinch yourself (distract from uncontrolled pain by pinching your hand, in between your thumb and index finger is a pressure point that can also reduce headache)

-Focus on heat or cold packs (placing a hot and cold pack on adjacent points of skin will make the sensation extra intense without burning or causing frostbite)

-Counting or Short Videos are often the best distraction as they are fast activities. Simply counting to 10 repeatedly can help.

-Don't hesitate to take pain meds as soon as you need them!

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Grounding exercises:

Anxiety attack survival

5 things exercise:

1.) Take 5 deep breaths

2.) What are 5 things you see?

3.) 5 things you hear?

4.) 5 things you are touching / can feel?

4.) Take 5 more deep breaths and feel yourself present in the room.

Self-harm survival

If you feel an urge to self-harm understand that this is simply a way to try to bring yourself into the present and release endorphins. This is an understandable desire. But safer options than cutting include

-Hold an ice cube against your skin. Draw patterns with the ice. Feel it melting.

-Snap a rubber band against your wrist.

-Tear a piece of paper into tiny pieces.

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Professional help

I am not a trained mental health professional. All suggestions here come from my personal experience and experience in the severe ME community. I strongly suggest that people struggling with depression reach out safely* to a therapist specializing in chronic illness and/or to a psychiatrist* if medication is desired. Peer support groups can also be extremely helpful and supportive both for patients and for caregivers who face their own mental health struggles.

While this guide focuses on severe ME specific coping strategies there are lots of great mental health resources for a general audience some of which can be applied to severe patients.

I specifically recommend "Acceptance Commitment Therapy" and "Grief Processing" or "Chronic Illness Grief" as ideal for some of the common mental health issues severe ME patients deal with. Please see www.meandmore/resources for more info and for chronic illness-specific hotlines.

****Safety warning****

Psychiatric hospital admissions can be fatal in very severe ME patients. Hotlines and psychiatrists or even random bystanders can call police or paramedics on patients against their consent. I, therefore, advise the following…

-Exercise extreme caution reporting suicidal ideation to a provider you have not previously discussed reporting policies with unless your life is in immediate danger and there are not family or friends who can take care of you.

-Only see providers who acknowledge that MECFS is a physical illness that cannot be cured with psychiatric treatment or exercise therapy.

-Never post severe mental health distress online outside of safe spaces like 25% ME Group.

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Severe ME patients face a massive increase in depression and sewercidal ideation. (purposeful misspelling! Instagram is shadow banning discussion) 

While I have made a post in the past about when assisted dying may be appropriate in very severe Myalgic Encephalomyelitisthere is a big difference between a decision based on long term health prospects and despair based on short term extreme pain and suffering. 

In surviving the second I have designed this post as a short guide full of the most helpful tips I have found over the past years. If you need mental health help as a severe patient I strongly suggest finding an anticarceral therapist. Aka one who does not support forced hospitalization. This is essential to ensuring your safety as psychiatric facilities can be extremely dangerous for severe patients with many being forced into GET or CBT. Resources like @dandelion.hill and @peersupportspace can also help provide peer-based community support and guide you in creating your own safety net. 

This post is specifically designed as a crisis response guide for bedbound, severely ill and persons with ME. In the long run someones living conditions, social support, financial and healthcare stability, and ability to pursue passions are all essential to good mental health. Because of a lack of these basic building blocks as well as frequent medical trauma, medical gaslighting and PTSD people with severe ME and MECFS more generally are likely to have poor mental health. Therapy community building and peer support are essential to improving the long-term mental health outcomes of the ME community. 

Finally, for those in crisis with severe ME, know that you are almost certainly having an understandable reaction. The levels of chronic pain Fatigue and medical neglect faced by persons with ME are ridiculously high. In the face of such circumstances, breakdowns are inevitable. Surviving is a huge victory in a capitalist society that minimizes, dehumanizes, and neglects disabled people. You deserve respect, dignity and care and it's okay to be upset depressed and angry when you do not receive it. Simply surviving is an act of resistance. You are not a burden you are fighting on the frontlines.