Last week, I had one of the worst sleep-walking incidents of my life. I’d had some distressing situations going on, and as often happens during times of stress this led to my sleep disorder worsening. I sleep ran/fell full-speed, head-first into my cupboard door. As you’ll see from the photos below, this caused some damage to both my head and the door, and I also injured my back and neck in the process. I spent the rest of the night in hospital, lying perfectly still, while doctors assessed whether my neck was broken. I get very anxious about my neck being touched, so having to let strangers put their hands around my throat, and at times restrain me to stop my head moving was probably one of the most stressful parts of all this for me. It turned out to be a complicated task as my X-rays don't look normal for someone my age due to the damage to my spine from my arthritis, and so making a clear-cut ruling as to whether or not my neck was broken was difficult to say the least.
My head has now healed up, bar some scarring, but in the nights since, I've continued to have sleep disturbances, waking with frightening dreams and repeatedly getting up to interact with them, often re-injuring myself. I’ve now got a motion sensor night-light which wakes me up if I get outside my bedroom, but the sleep disruptions are still exhausting, and it turns out there are still several ways for me to sleep-injure myself without leaving my room (sorry knees!)
Most of the time, I don't think living with illness is a big deal. This is one of the times where I'm reminded it kind of is. My neck has been cleared, but this very easily could have gone the other way, given the force with which I hit the door and the fact that my bones are already weakened by my illnesses and medications. Even though I tried very hard to comply with the medical staff's instructions to keep completely still, the stress and sleep deprivation caused my muscles to start spasming and the nurses had to restrain me to try and protect my spine. If my neck had been broken, this could have caused serious damage. As much as I want to stay positive, find the funny side, and calmly move on from this experience, I can't help but feel a little scared when I think about that.
I’ve realised though, that right now, it is okay for me not to be okay. Being scared is a normal reaction to an abnormal situation. In fact, I think it would be far more worrying if I was completely fine right now, as that would be a sure sign that something was very wrong! I’m handling this a lot better than most people would, as I’ve had plenty of full-on health situations, and have built up a fair bit of resilience. But I’m still not okay. And that’s okay.
I’ve been getting a lot of questions lately from friends as to why I’m not on sleep-medication, whether various alternative therapies would help, or whether I should be in some way restrained at night. Of course, after this, I have myself been questioning my decision not to seek further treatment for my sleep disorder. While I have hurt myself before while sleep-walking, this is the first time that I’ve faced the prospect of ending up with a long-term injury caused by my sleep disorder. I even started feeling guilty about my decision, and wondered if I brought this accident on myself by choosing not to continue searching for answers.
But this guilt comes from an illogical place. My doctor fully agrees with my decision not to continue looking for treatment, and she confirmed that there are no more medical options left anyway. When it comes to non-medical therapies, I have fought the sleep disorder with everything I have. To clarify things for myself, I wrote down a list of everything I have tried to help improve my sleep disorder. It was four and a half pages long, and I’m sure I was forgetting some things. I’m not going to include the full list here, but here are a few examples:
- · Sleeping tablets
- · Different sleeping tablets
- · Medication specifically designed for sleep walking
- · Sleep restriction therapy
- · Treating thyroid, iron, vitamin D and vitamin B12 deficiencies
- · melatonin
- · Meditation/mindfulness (various types)
- · Relaxation (various types)
- · Cognitive behavioural therapy
- · Homeopathic sleep drops
- · Lavender sleep balm
- · Weird alternative therapy I can’t remember the name of which involved holding metal rods and balls
- · Treatment for heavy metal poisoning (including removal of fillings)
- · Keeping a strict bedtime and wake up time
- · Only going to be when tired and not setting an alarm
- · Warm milk
- · Counting out of sequence
- · Sleeping naked
- · Sleeping under a weighted blanket
- · Hypnosis (both in sessions with a therapist, and self-hypnosis using a guided audio.)
Most of the things I’ve tried made no difference to my sleep-problems, while others made it worse, or had dangerous side effects. The only thing that made a significant difference, was having an assistance dogstay with me, but it’s going to be while before I can have a dog permanently.
As you can see, the list ranges from medical interventions, to psychological interventions, to alternative therapies, to straight out old-wives’ tales. Some of the things on the list even contradict each other, as in cases where I’ve been given conflicting advice, I’ve tried to give each option a shot. I can confidently say I have tried it all.
Even if I hadn’t tried everything, this disorder is still something outside my control and I don’t need to feel guilty for it anymore than someone with cancer should feel guilty for the effect the disease has on their body.
I understand my family and friends’ worry, and I appreciate their concern and care for me. Continuing to battle against the sleep disorder in these ways isn’t going to help right now though. Earlier this year, I ended up feeling very bad about myself for having anxiety, and spent a lot of time and energy on wanting to get rid of it. All that did was cause it to escalate. As soon as I came back to accepting my anxiety as just something that is a part of my life, it drastically reduced to a much more manageable level. I feel like the same applies here. I am going to sleep walk more at the moment, as stress and sleep-deprivation make it worse. That sucks, and it’s unpleasant to keep injuring myself, but getting upset about it and coming up with new (and bizarre) ways to try and stop it is just going to cause more stress and make it worse.
With any luck, it won’t be too long until I’m assigned an assistance dog and in the meantime, I’m taking a deep breath and trying to accept the sleep adventures.
Thanks for reading,
Little Miss Autoimmune.