[MWatts]

Hello!

Do you have Ehlers Danlos Syndrome? Have you struggled with sleep? If so, I would love to talk to you.

I developed insomnia 5 years ago and struggled for two years hard, didn’t implement any CBT- techniques and just felt bad about it and hoped it would go away. Eventually, in my third year, I relaxed and accepted the state of things (also was able to eliminate nighttime anticipatory disturbances like a furnace that went off randomly at night, a cat jumping on my bed, a baby crying upstairs) which was my main hangup. I just couldn’t relax knowing I would be interrupted.

So it was manageable for a year or two, I still felt exhausted often and would sleep poorly on the night before an anticipated social or work event, but altogether my quality of life had improved. I also had unknowingly implemented stimulus control, mindfulness, and sleep hygiene naturally on my own. I suspect there may be some sleep apnea going on as I was able to fall asleep well every night, and had minimal remembered nighttime awakenings, but still often felt exhausted. I did let it control my life though, and would tell myself I couldn’t do things like drive or visit friends often because I was tired.

First baby comes along, traumatic birth, horrible experience. Absolutely traumatized.

Sleep issues the whole way through the birth and recovery, insomnia raged, mood disorders raged. Hopelessness and agony set in and I experienced, and am experiencing the most brutal mental health journey I have ever known. Constantly seeking the next pill, the next explanation, uncontrollable crying and pleading and just horrible. I am still not well but working on it with my doctor and a therapist. Have started sertraline to try and calm the outrageous anxiety with a touch of ptsd.

Before sleep issues, I was HAPPY! Led a full vibrant life and sought the things I wanted. I always was a bit anxious, but managed it well. Living with Ehlers Danlos exacerbated that I believe.

The irony is, my daughter is an amazing sleeper. But I cannot handle having her in my room so she is with my husband currently.

The whole point here is, I know it will take time, I know now I just have to keep living life even though I feel like I may fall over, even though my eyes are bloodshot and I have a constant splitting headache and feel like I could cry at any moment. I have eliminated my sleep efforts and am trying to get on with my day, but the anxiety is still massive and difficult to ignore.

I did learn, during my obsessive sleep research, that it is very common for people with Ehlers Danlos Syndrome to have sleep disorders. I am seeing a sleep lab to rule out Sleep Apnea, as I do snore quite badly and wake up frequently to use the restroom and sleep talk. My doctor says it’s all anxiety as I’m waking constantly at night and never used to, perhaps it is, but I would still like to rule out a sleep disorder.

So if you have EDS and are struggling with sleep it may be beneficial to go to a lab, and or talk to your doctor about any underlying mood disorders. And obviously, practice CBT-I.

The biggest help to me pre pregnancy was just getting on with it. I found that every time I tried to start a CBT-I course it just drew attention to it. I didn’t think about my sleep at all during the day as I knew I would sleep another day, my bed was a safe welcoming place and I wasn’t afraid even though I still had exhausted days.

I can only hope that with time and acceptance along with a little help from big pharma and insomnia coach I will get better again. I know now that I need to live a fuller life though, so I will cultivate that for myself and my lovely daughter

Please please reach out to me if you have had a similar experience.

<3

[Martin Reed]

That sounds incredibly difficult and I appreciate you joining the forum to share your experience.

It’s encouraging to hear that you have been able to eliminate your sleep efforts and are trying your best to get on with your day and engage in actions that keep you moving toward the life you want to live, even when all this difficult stuff is present.

I am not sure anyone can successfully ignore difficult thoughts and feelings such as anxiety — perhaps we can temporarily, but it always seems to end up coming back, right?

With that in mind, just as there’s a way to move away from trying to make sleep happen (and that such an approach might be beneficial) perhaps there might also be a way to move away from trying to fight or avoid difficult thoughts and feeling such as anxiety (and that such an approach might be beneficial, too)?

Perhaps all the effort and attention required to engage in a battle with anxiety (and other difficult thoughts and feelings that are out of our control) can make things more difficult, consume more of our energy and attention, and — in turn — also make it harder for us to live the kind of life we want to live?

Having said all this I’d urge you to be kind to yourself because what you’ve described is very difficult. You are a human being and you are finding this difficult stuff difficult. None of this is your fault and you are not alone in your struggle.

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

[Spindledog]

MWatts, I do not have ED Syndrome but have been evaluated for sleep apnea and now have a CPAP machine. I still have frequent wakenings, like every 90 minutes to 2 hours, but I know now that this is the way the stages of sleep are cycling, so I tell myself it’s ok and that it’s not insomnia, but it’s a sign that my body just completed successfully a cycle. And I feel confident and I fall right back to sleep. This is different for me than when I wake up at night and “can’t “ go back to sleep. Feels different and is frustrating.
I am just amazed at your story. You have been through a lot and I am so glad that you are in Martins program to get some direction and help. My very best of thoughts to you. I am optimistic for improvement and hope you are too. Let’s both put our all into this.

[MWatts]

Hi Spindledog,

Thank you so much for your reply. It is so hard, I’m finally sort of starting to feel better, I still need to sleep way more but I’m less upset throughout the day. I have a huge sleep debt so it will take me quite awhile.

I’m looking forward to see if I have sleep apnea, I actually work for a sleep apnea clinic and have always suspected it but never took the initiative. Though, my intense sleep anxiety issues will probably prevent me from using a CPAP (so frustrating) so I would go the mandibular device route.

I’ve gotten better at falling back to sleep when I wake, but not good enough yet as I still feel pretty horrible during the day. It’s so frustrating that for someone with a really weak body that needs to be restored at night, and all the awhile breastfeeding, I’m unable to get that sweet restorative sleep. It’s honestly my personal worst nightmare.

I know it won’t always be like this, but it just really gets to me now because I love my daughter and I’ll never get this time with her again. Trying to make the most of it, but man, it’s so hard.

I really appreciate you taking the time to reply, so glad to hear you’re doing better with your CPAP as they can be a life changer.

Love,

MWatts

[MWatts]

Thank you so much Martin, it is the biggest challenge I have ever faced.

Sometimes I just let myself feel the anxiety and sadness but it very quickly can take up 90% of my day if I let it, so I feel I need to do some enjoyable activities and have some enjoyable interactions to get through the day.

Though I was a happy person before, I’ve always leaned into melancholy. And now that I’m postpartum, that very quickly turned into postpartum mood issues so I have to keep an eye on myself.

Is there anything you would suggest in my practical application of CBT-I techniques? Do you think sleep restriction would be a good fit for me when I already wake up so constantly?

Thank you very much,

Mia

[Spindledog]

MWatts, you’ve got a lot going on. I liked reading that you love your little daughter and your time with her. And breast feeding too is a commitment of time and effort too. Sounds like you are aware of what you want and your goals. Best, Spindledog

[Martin Reed]

Hello Mia!

You’re right that anxiety and sadness can be all consuming — it’s good to hear that you are committing to doing things that matter to you, even when it is present. That’s often a more workable way of responding compared to going to war and using all your energy and attention in an effort to fight or avoid those feelings (since they always end up coming back anyway, right?).

A sleep window can help reduce the amount of time available for nighttime wakefulness and help with sleep consolidation if you are spending a lot more time in bed compared to the amount of sleep you usually generate.

From my experience working with clients, the sleep window can often be most useful as a tool that helps us move away from chasing after sleep. It’s a lot harder to chase after sleep if we have an earliest possible bedtime, a consistent out of bed time in the morning, and aren’t napping (or attempting to nap) during the day.

Something that might also be helpful is exploring how you respond to those awakenings when they happen. Are you trying to fight or avoid them? Are you putting effort into sleep when you wake at night? If so, that might be creating some struggle that has the potential to make things more difficult.

I hope there’s something useful here!

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

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