Wednesday, 30 March 2011

Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

One of the severe ME symptoms I find hard to discuss in any detail & yet causes me huge problems, is what I call 'Meltdowns' - Essentially, super sized night sweats - though I can get them any time of the day or night, awake or asleep. It's an insane, shame making machine of clammy grossness, & generally makes me feel like I'm lying in a swimming pool, not a bed - NOT cool, and terribly embarrassing!

There are many causes for night sweats, including the menopause, other hormonal problems, neurological illness such as MS and ME, & even some cancers. For those of us with Myalgic Encephalomyelitis, it seems to be caused by a combination of our neurological problems with thermoregulation/temperature control, our immune dysfunction, and our endocrine/neuro-endocrine dysfunctions. You can read a lot more about ME symptoms on The Hummingbird's Foundation for ME - it's a very long list of ME symptoms so I suggest you use your browser search tool (ctrl F) to search for 'sweats'. There are several small sections covering it.

Photo copyright Meredith Farmer - Visit her Flickr Site Here!

For me, 'meltdowns' come along or get worse with my body being especially exhausted, after overworking it, if I have adrenaline rushes, or tachycardias, and usually are associated with flashes of heat or chills, (& for some reason, for me, increased pain) and get worse with lack of sleep - ironically, they tend to make my insomnia worse because well, it's not nice to try to sleep in a wet bed, with your hair stuck to your head! It just keeps you from ever getting into the deeper stages of sleep, & ultimately can make me so wide awake that I haven't a hope of getting back to sleep.

Because of this, night sweats aren't purely a comfort issue - they (& the adrenaline rushes often behind them, because they're so exhausting) can easily cause a tidal wave of worsening symptoms. Despite that, none of my doctors have ever been interested in helping me find anything I can do to reduce or eliminate these symptoms. Goes back, yet again, to how once you have an ME or 'CFS'/Chronic Fatigue Syndrome diagnosis in the UK (& many other countries), you're essentially written off by the health service. There is very little of any substance doctors are actually allowed or encouraged to do for us.

Photo copyright Luigi Anzivino - View their Flickr site here
My sweats sometimes get so bad that it basically doesn't matter what I do, I still wake up freezing cold in a bed that seems to have had a recent visit to the Sea. :p I'm not talking a little bit of a damp pillow - I'm saying my hair could literally be wrung out, and my bedsheets & especially pillows are absolutely drenched.


Awake or asleep, I can literally have sweat running down my face & drenching my hair like I've just run a marathon - & my head generally feels like it's been deposited in an oven! And as of yet, I haven't found anything that really stops it. It's all pretty awful physically, and added to that is the emotional factor. Sweating is in our society a bit of a taboo, especially if you're a woman ... and really, it doesn't exactly make you feel attractive. It can be really shameful and difficult to deal with ... makes you want to hide away in a hole & never come out - despite the fact that it's absolutely not our fault!! Just talking about this, I feel quite disgusting, and I'm struggling with finding the courage to actually publish this post!


Bedbound girl in bed by Jennifer Hardt - view her site here!


I do have some coping mechanisms that help me copy, which are worth mentioning. (Note, I'm not going to link to any of the products I'm about to discuss, as I don't want it to seem like I'm advertising them. It's just a list of things that help me - that I want to share with you in case it can help someone else too!)

  • I have waterproof pillow protectors under my pillowcases. Note - don't use, if you can help it, the plastic kind that just crinkle and rattle about under your head - they're super annoying & sure don't help with sleeping, plus they make you feel like a kid who wets the bed, you know? Instead, find the kind that are towelling on the outside and coated in a PU waterproofer on the reverse of the fabric. They're much softer & thinner - though in all honesty they cost more & don't tend to last quite as long as the other types.
  • I also have a waterproof mattress protector, quilted so it doesnt rustle. Expensive, but worth it to protect my much more expensive mattress!!
  • I try to remember to keep spare pillowcases in the room so they can be quickly changed if I need. I can't always lift my pillows to do that though, so it depends on whether my carer is here.
  • Ok, now this is gross, and totally embarrassing - but a quick fix I sometimes use when the pillowcases can't be changed, or when I know I'm only going to sweat more anyway so it's not worth changing them till after I 'wake up' - I dry them with a hairdryer and then try to go back to sleep. When you're bedbound and dependent to any extent on a carer, you don't always have the perfect option of re-making your bed or even changing your pillowcase! Unfortunately, we don't live in an ideal world. I also hate leaving tons of washing for my carer too, so I try not to have the sheets changed constantly.
  • I believe you can actually buy sleepwear specially designed women going through the menopause who get night sweats, which helps wick the sweat away from you so you don't wake up cold - but I've never tried it as I have problems with wearing anything even vaguely heavy - causes too much pain. It's vest tops and shorts for me! Whatever you do though, don't wear silky type clothes if you're having night sweats because they won't absorb any moisture and you'll end up freezing!
  • Always try to make sure you have water by the bed, and keep replacing your fluids. Easier said than done for a lot of us, I know, but important all the same.
  • You can buy special cooling sheets now, made of Tencel fabric - I've never tried them though, too expensive. I always thought they'd be a really good idea though!
  • You can, alternatively, buy a cooling insert for your pillow - the Chillow. Now these are amazing. They have a special gel in them that stays cool, which in turn helps you to cool down. You can even put them in the fridge before bed, if you like your pillow super cool. I find it helps reduce how much I sweat, and also just keeps my head a bit cooler when I am sweating. (It gets radiator hot!) Chillows are designed to stay cool for the first few hours of sleep, then slowly they get a little less cool - just as our bodies are designed to do. It doesn't quite work for me though because my sleeps are so much longer than for most people - so the coldness doesn't last quite long enough. However it helps to a larger extent, and it's well worth the money if you can afford one!! (It also helps when I have a migraine, by the way!)
  • I always have a fan on in the bedroom to keep the air moving around the room. This won't work for everyone, probably depends on your specific reactions to room environment, but for me, I simply can't cope without one, even in the winter! Oddly, I sweat more in a cold room than a hot room - & it's even worse if the temperature is very changeable ... so I try to keep my best to keep the room a stable, warm temperature ... with the fan to cool me down. I suggest experimenting & seeing what works for you. :)
  • I use a lot of talc for when I have milder sweats. It does nothing for the worse ones, of course.
  • You should probably be careful how much caffeine you have, & spicy foods you eat; & how much alcohol you drink.
  • I have heard that for some people, certain vitamins, such as vitamin D, can help reduce or even eliminate night sweats. I'm in a catch 22 here though, because I literally can't afford to buy vitamins every month ... and my doctor always seems reluctant to prescribe them as of course, it costs the NHS money.
  • It's also worth checking your thyroid function. A lot of people with ME may have thyroid problems which can contribute to these symptoms.



Reader Question :

Do you have any coping tactics
which help with night sweats?




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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


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Thursday, 24 March 2011

Dressing up my Blog in Grown-Up Clothes, & Joining a New ME Blog Ring!

I just wanted to let you guys know that my blog now has it's own sparkly new domain. :) The best place to find it now is www.thethingwithfeathers.me (though the old blogspot address will still work!) Yup, the slight ironic amusement of a .me address did occur to me to when choosing which name to go for. ;) (Or maybe that's just me, ha!)


Playing Dress Up In Mum's Shoes
photo by quinn.anya via PhotoRee


I've been having a few teething problems in making the jump to a custom domain, though it could have been worse. Rather annoyingly, I've lost my blog rolls, so if I can't find a way to restore the widget settings, I'll have to re-do them. (Anyone have any idea if there's a way to restore them?) If when my lists are back up, you notice that a blog that was currently on my list is now missing, do send me a note & let me know so I can re-add it. It's hard to remember exactly what I had on there!!

While I'm writing, I'd just like to draw your attention to the new blog ring which Action Now have set up for ME/CFS Bloggers : ME/CFS Blogger Nation.

Blog Rings are a simple method of joining a group of blogs with similar focuses. Each blog has a small banner on their site, connecting it to other blogs in the ring. Thus it's a great way of both networking, & giving better exposure for all of our blogs. :)

You can read more about ME/CFS Blogger Nation on Action Now's site. It only takes a few moments to sign up, though your site then has to be activated by a member of the blog ring team.

You can see an example of the image & links that will be displayed on your blog if you look near the bottom of my right-hand sidebar. :)

ME/CFS Blogger Nation Ring for Bloggers talking about Myalgic Encephalomyelitis & CFS


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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


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Sunday, 20 March 2011

An Ode To Insomnia

Woman tossing & turning from insomnia by Stephanie Redmond, via Photoree.com


Why is it that when we most need to sleep, when not sleeping is going to make us sicker, that that's when Insomnia rears it's ugly head??!!??


Sulking Child - Image © Joana Virck-Alevra at aboutpixel.de

I don't have anywhere near as much of a problem with Insomnia now as I did in the first few years after my relapse ... when I would rarely be able to sleep more than a few hours a night, and would regularly be awake for days at a time. But still, now, on the days when sleeping is most vital, it's like my brain has a hissy fit and refuses to play ball - just sits down in the middle of the court, folds it's arms, and sulks with a vengeance.



I'm trying hard to rest and recover from my visit to the dentist this week, my first outing in over 8 months - something I'll try to talk about over the next few days as I'm able - but my body's on high alert and my mind just won't stop buzzing - little wonder considering how much adrenaline seems to be rushing around my system, and how high my pulse is right now! The physical stress of leaving my bed, never mind the house, and undergoing painful dental work has left my body in a pretty bad way. My pain levels have been fairly stable for the last few months, but now they've suddenly kicked off again with a vengeance, and let me tell you, lying awake in mind-numbing pain is not my idea of a good time!! My M.E. is totally kicking my butt!!

Woman lying in pain on bed

All in all, I feel pretty frustrated right now, & I'm dreading trying to sleep today! I've set some essential oils burning to try to calm myself down physically before settling down to sleep (well, my carer has), hopefully that will help. And thank God for my sleeping tablets, Zolpidem, which not only make me sleepy but also go some way towards dulling the pain for a few hours so I can get to sleep initially, which is often my biggest issue.

I found this poem a while ago, by Liza Rosenberg and I find myself thinking of it now when I'm hit by a bout of insomnia - it always makes me smile because it's so me. :) I thought I'd share it with you guys too. Please do check out
her site, she has some really awesome poetry posted there. :)


Ode to Insomnia

Bleary-eyed and body weak
The lack of sleep begins to wreak
Havoc on my tired soul
Exhaustion starts to take its toll

I try to rid my mind of thought
But sadly it is all for naught
For slumber doesn’t want to come
Despite the brain and body numb

So I sit and try to write
Listening to sounds of night
Feeling just a little punchy
Damn it! Now I’ve got the munchies…


Posted With Permission. :)


Image of Question Mark by Salvatore Vuono at FreeDigitalPhotos.net
Reader Questions :

What do you guys do to beat Insomnia?

How do you cope with the emotional side of
not sleeping & the increased symptoms that causes?




Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


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Thursday, 10 March 2011

Heartbeats, Adrenaline, & Dentists - or more accurately, a general ramble about my week.

For the last 4 days or so, I've had one of those strong, heart-thumping-out-of-your-chest tachycardias pretty much constantly, along with a heightened stress reaction to things like sudden noises (bad enough normally but a bit insane right now), my muscles being constantly and painfully tensed, meaning I can't get comfortable. I'm definitely in 'fright' mode, my body ready to respond to some threat that isn't going to come. (Well, unless we count the possibility of a psychiatrist knocking on my door and sectioning me for 'believing' I have M.E. LOL)

I'm on antibiotics right now for a bad(ish) urinary tract infection (I seem to get them all the time) and I guess maybe either the physical stress of the infection, or the antibiotics themselves (or both) could be what's caused this. Whatever ... I just wish it would go away!

It's really exhausting me even beyond normal standards right now. My brain's scattered all over the place even more than my normal state of pretty constant brainfog, - I'm too tired to think, never mind write, or speak - thankfully with these very occasional moments of absolute clarity (which is normally rather hard for me to come by, lol) which I am using to my benefit, allowing me to stay at least a little connected online. So I thought I'd check in with you guys and let you know where I'm at. :)


For those of you who read my post a couple of weeks ago about dental treatments ... the domiciliary dentists who came to see me have arranged an appointment at the surgery to have my broken wisdom tooth removed, in a couple of weeks. They had to find a slot free for the first appointment of the day, so that I can be taken into the dentist pretty much as soon as I arrive. Being a day sleeper, this will be at the very end of my day - but it's a much better alternative than having to wait for an hour, sitting up, in a probably germ infested waiting room.

The only way I can think of to plan for this visit - my first trip out of this house in over 6 months, and only the second in more than a year - is to take painkillers, caffeine & glucose, and possibly half of one of my sleeping tablets (zolpidem) because oddly enough they make me more mobile than usual. (Weird, I know. I have no proof but believe this to be because zolpidem has a very specific affect on the brain - there's research going on using it to bring coma patients back to consciousness!) I honestly don't think this will even be possible without medicating myself first, sigh. Then I'll have to lie down in the back in of the car on the way there & back (which will inevitably cause car sickness and a lot of pain - not to mention a risk of death if we crash lol), with my pillows and body pillow to help support me, and a blanket so I don't get cold - and then get in and out of the surgery as quickly as humanly possible. I have no option but to do it, because if I don't get it sorted now, it will become infected and make a bad situation much, much worse. Any other ideas would be most welcome!!

I'm terrified of collapsing while I'm out. I'm terrified of the actual treatment too, because I have TMJ (jaw joint) issues, making it very painful to have my mouth open for long, and with it being a wisdom tooth it'll be difficult to get to as well. I'm scared because I plain old hate dentists - though I've been working on that fear and it's not so bad as it was. I'm even more scared that I'll crash badly afterwards and go into a worse relapse state, losing the already only tiny bit of independence I have, and the ability to be online. I know there are much worse things than being bedbound in the state I am in right now, because I've been there. And I know that I'm teetering on the edge here already and I don't want to fall over it again and end up back where I was a few years ago when I was regularly having paralysis symptoms, for example.

I'm going to have to rest well over the next couple of weeks, to give myself the best chance of that NOT happening! Rest - funny really, since I'm already bedbound, to talk of rest - to most people my life would seem a constant rest!! How little they know.


'Resting' in bed. (if only I had her hair!)


So now ... if my heart would please stop being silly and calm down, and if my adrenal glands would get that there's no danger and stop pumping that darned adrenaline out, so that I CAN rest and relax, I would really appreciate it! :p



Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


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