Here’s the second instalment of the self-help survey results (part one can be found here). In this part I was looking at the sorts of things that we can do to stop the illness getting worse.
What sort of things makes your illness worse? What sort of things do you find you have to avoid?
Any form of psychological stress (confrontation, decisions, debate, guilt etc), environmental stressors such as mainstream skin care, fragrances, noise, busy places, strong smells, bright lights etc
Overdoing activities make me much worse, which means I am unable to take part in day long activities.
Doing too much, overstimulation (noise, too much going on around me, tension, bright light) chemical smells (petrol, paint etc) new infections, premenstrual hormones, too much medication, the wrong foods, not sleeping well, too hot or too cold.
Do you find yourself oversensitive to light? Noise? Chemicals? Extremes of temperature? Anything else?
At the time yes (had to change to natural skincare and natural household cleaners e.t.c. to avoid synthetic chemicals), but not anymore.
I have found myself sensitive to extremes of temperature and noise, but most of all weather. Before getting ill I was very much a winter person, but I have been bedridden for the past two winters.
Noise more than anything, but I have to wear sunglasses even in winter and really struggle with paints and petrol etc. Heat zaps my energy and being cold causes me to tense up, so I get tired quicker and can end up with very stiff and sore muscles.
How important do you think it is to tackle problems with sleeping?
Very. Although I could write an entire blog post on this subject…
I think it is very important. Although after sleeping I don’t feel greatly refreshed, I think that our bodies still crave sleep more than an average person
Very. Good sleep seems to be fundamental to me feeling as though I can make improvements to my health. When I’m sleeping badly the day is just a struggle. When I get a reasonable night’s sleep I feel like I have enough energy to invest in things that will help improve my health. On the occasions when I have such a good night sleep I wake up feeling refreshed, it’s so clear to me just how important sleep is!
Do you have to take measures to improve your quality of sleep? What works best for you?
At the time I used hypnosis and listening to sleep hypnosis tracks to help me get to sleep and back to sleep if I woke during the night. I also gave up caffeine.
Yes. Regular pain killers before pain starts; warm aromatherapy bath with candles, no lights on; dimmed lights to relax before sleep; a fan; my favourite feeling blankets/ sheets; a warm milky drink; my cat! Sometimes take herbal remedies to help sleep. Going to sleep at the same time every day.
Since starting Lyrica, my sleep has improved greatly. Also, if I have a relapse I end up sleeping for about 3 days and nights, but after it I end up unable to sleep, so I now take a sleeping tablet to get be back into my normal rhythm
No caffeine; yoga and meditation during the day; a regular routine, getting up at the same time every morning; 10 minutes of easy reading before lights out; marjoram oil on my pillow if my mind is a little active; listening to a yoga nidra cd if I can’t sleep; If my pattern gets really knocked out of balance I might take herbal sleeping tablets for a couple of days to re-establish a pattern, even if they make me a little foggy in the morning; Early in my illness I found amitriptyline really helped and at other stages I’ve found melatonin useful.
Once again thank you so much to the respondents of this survey. The full response to the survey from one of the respondents can be found on her own blog at Sky Blue River.
I’d love to hear from more of you so please feel free to comment. Or you could still answer one of the surveys in full if you’d like to!