Can we Transform Pain and Despair into Beauty?

A few nights ago, my carer and I watched the movie 'Another Earth'. There's a scene in the movie that's stayed with me since. One of the main characters is telling a story to the other main character, who is in a great deal of pain in more ways than just the physical. (clip embedded below but I'll give a text version for those who can't view the video.)

The story is of a cosmonaut who is all alone in his space capsule, looking down at the curvature of the Earth, and is lost in that beautiful moment. But then a tap, tap, tap starts somewhere inside the capsule. He tries to stop it but cannot. Days go by, like torture, and he now knows that this repetitive sound would break him. Would drive him crazy before he will reach his destination.

She begins to tap on the table with a spoon, comparing her tapping to that inside the cosmonaut's capsule. The cosmonaut realised that his only chance is to fall in love with the sound. To, rather than let the repetitive tap be annoying, instead perceive it as music. So he shuts his eyes, goes into his imagination. Then he opens them, and he doesn't hear tapping anymore. He hears music! And throughout the rest of his journey, he floats through space in total peace and bliss!




I was watching this and wondering how much it could be applied to the things that pull us down, causing us pain, illness, & other struggles. Is it possible that we could make music and beauty from our pain? Could we, somehow, turn a switch in our brains that helps us to see things a different way?? Not a healing, because who can stop a storm in it's path? (excepting God) More ... to still be living with all the same pain we were only moments before - but to see it and feel it.... experience it differently, somehow?

I don't yet know the answer ... but I suspect that I would rather like to find out! I haven't been in a good place physically or emotionally recently. I want to climb out of it but it just seems impossible right now. I wish I could find a way to make it feel.... just not quite this bad, you know? To find comfort and rest within the turmoil of a storm of pain. To give myself an eye in that storm to wait it out for however long it lasts? Right now I feel like I'm living in the middle of a huge despair tornado, so I really would love for this to be possible! I do believe the brain, especially when combined with hope, is an amazing thing, capable of so much more than we know. Maybe it is possible to find a way to change our perception or our perspective! After all ... if you're on the inside of the storm pictured above, it would seem ugly and violent in the extreme, not to mention completely unforgiving. From above, though, in space, it's breathtakingly beautiful!!!

Oooh! Didn't I just get all meta-physical on you!! ;)

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! :)

Can we Transform Pain and Despair into Beauty?

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Adjusting The Sails

( Updated and Extended, on August 14th )

I'm lying here feeling .... welll, honestly, I don't even know what I'm feeling.

I'm fairly sure that this post is going to be somewhat of  a rant ... a gush of feelings that have been brewing inside me for so long, I feel like I'm going to go mad if I don't get them out. I just have to write!!!

Sometimes it's really difficult to figure out what it is that I'm feeling!!! Everything gets so overwhelming, and it makes it hard to process things, and to pick out & identify individual emotions.

 My whole body is pulsing with twitches, spasms, buzzing & a sort of pulsing - and I've spent most of the last few hours barely able to move. Barely able to even think, through the pulsing.

I feel that I'm a really gloomy person when I feel, and especially when I post, like this. I'm very aware that I need to find the peace and the joy that comes with finding something to hope on once again... but its alluding me right now. I'm not depressed I don't think - not any more than anyone dealing with my kind of life and situation wuld be. But I am really overwhelmed right now - there's just too much happening all at once. New scary symptoms, flare ups, stuff going wrong at home, the issues (ongoing) with my doctor, who still hasn't delivered on promises ... and now various appointments to sort out and to somehow find a way to get through without ending up in a full blown relapse. On top of that we found a lump on my beautiful dog Jessa, yesterday, so she has to go to the vets (without me!!) today. :( I can't even do that, and it makes me feel so useless!!! To be honest, (big tough me is about to admit that ...) I'm scared, and I feel small and once again,  on a running theme, invisible. Nothing seems to be going right, or easily. (Gosh I have so much to tell you guys and I don't even know where to start! I can't do it now anyway. I'm surprised i've been able to keep writing for this long!)

I'm feeling so frustrated with myself, too. So utterly useless. I can't manage to do any of the million and one things that need doing... and unless you've been there, no-one can know just how hard that actually is. Lying in bed all day is not all it's cracked up to be!! I really, really hate watching Anna (my carer) struggle to do things for me, and I can't even help. I feel like a waste of space too much of the time.

You know what I hate about M.E.?? I hate that you can never fully adjust to it.
You can never get used to it, because suddenly, bam!!!! something else, some new symptom, changed intensity, or new disability hits you full in the face, and you have to statrt adjusting and coping all over again. 

Blowing Away by Jon McGovern

On top of all that, yesterday I had a full on, in my face, flashback of my ex husband attacking me. (I'm a survivor of domestic abuse, for those of you new to this blog) Just what I needed to get through the day, huh? Honestly, I thought I'd pretty much got over what he'd done to me, and all the fallout from the years of abuse, and other people's reactions to it - but this flashback was pretty intense and afterwards I felt broken. Heartbroken. That was the man I had loved, but he used me and he hurt me. So on top of being overwhelmed, scared, and everything else - now added to the mix is a grief so massive that I feel like I'm breaking into tiny pieces and being flung to the wind. All over again!

Recently it seems like I keep putting my hope in things, trying to find someone or something that can help ... but my hope gets hit every time and then the only things to do are either give in to depression and panic, (which I'm simply not willing to do!) or find something new to hope into. But I know I'm strong enough to get through all this - and whatever else life throws at me. I have up until now! Afterall, I have Anna, my best friend in the whole world, fighting my corner and caring for me instead of going off to live her own dreams. I have some amazing online friends, who have got me through so much over the years! I have my dogs. And a family who loves me even though they don't really understand and can't really deal with it all. And I have the online ME community, which is also making such a difference in my life. Perhaps those things are the only hope I need right now, they're sure strong enough positive's .... afterall, there are so many people out there going through so much more than this. And well, because of the people 'around me', at least I'm now standing up (well, not literally, HA ... ooh, the irony of that statement!) and trying to get the help I so desperately need, and deserve!!!!!!


◦ - - ღ - - - Because I do deserve it. We all do!!!!! - - - ღ - - ◦

And on that note, albeit it something I know in my head but not yet my heart, I'll end this post!

Note : Sorry about all the mess of this post. I'll try to edit out all the typo's etc, tidy it up, maybe add pics, and tag it etc, tomorrow .... somehow i just needed to get this out... though i feel i've done a very poor and very short job of expressing myself.

I think I just needed to speak, to vent as many of the things that are
splintering me, crack by slow crack, as possible .....
for my feelings to not be so invisible as I myself have begun to feel!!

Update : 14th August

Thank God, Jessa is ok! The vet found quite a lot of lumps actually - but they are, as I was hoping, just fatty lumps, which she's had a couple of times before. He doesn't even want to bother removing them right now, and won't, unless they get bigger or start to bother her in some way. So that was a huge relief for us!! :) :) :)

We had my other dog, Kiya, checked out at the same time, and ironically, the story there was more worrying. A while ago, a different vet at the practice found a lump on her liver. Kiya's starting to get old now, and has a lot of really severe skin and immune problems, so we decided (on the info the vet gave us) not to bother doing anything to get it further checked out, because I wouldn't want to put her through any intense treatments as she is going through enough already. However, the vet we saw this week (One of the practice owners) checked the lump for us, and he thinks that it's on her spleen, not her liver. He can't be sure till we get a scan, which we're doing next week - but if it is on her spleen, it would be a fairly simple operation to remove her spleen. A completely different scenario to it being on her liver!!!!

Jessa, on a walk with me & Anna, on a rare holiday to Scotland in 2009

Kiya, curled up behind my knee - she loves to be close to us! In 2010

I'm pretty mad with the vet we saw initially, as this issue could have been sorted months ago ... but then at the same time, I'm so glad that he was probably wrong, because this means that Kiya's life will probably be much longer than I was thinking! Guess we'll have more information after she's had her scan next week. It means a general anaesthetic, (which is always very stressful and worrying for me, because of the risks) but hopefully it'll be worth it - and my dogs usually come out looking less harried than I do, rofl!


I've finally got to adding pictures to this post, and getting rid of all the typo's (sheesh there were a lot!!) - I had hoped to do it the day after I wrote this post, but I've been really struggling to get online, and my cognitive functions have been pretty poor, so that just wasn't gonna happen. Ah well, got there in the end!! :)

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! :)

Adjusting The Sails

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Six Products I couldn't live without!

Hi!

I wanted to share with you guys the six products that have helped me cope with being ill, in pain, and bedbound the most recently - those which have made enough of a difference to my life that I would highly recommend them to other people in similar circumstances. It can be hard to find things that are actually worth the money you pay ... and there are SO many gimmicky products that tell you they'll somehow revolutionise your life, when all they really do is make you poorer. ;)


The Marpac SleepMate White Noise Machine

Bit of a bigger review here simply because I posted one on Amazon a while back so I can just copy/paste to save effort.

Oh my gosh, this is one of the best things I've ever owned!!! Some of my biggest problems right now are noise intolerance and insomnia. For years I've slept with a large fan on in the summer, and the white noise it makes lulls me to sleep, and it shuts out so much household noise that it helps me stay asleep. It also makes me more relaxed while I'm awake, and lessens the 'jump' effect when there's a sudden noise in the house. Of course in the winter the large fan isn't always an option, and I always struggle more with my sleep. (and miss it when I'm awake too!) This year my noise intolerance has been particularly bad, and so I started to search for an alternative to my fan.

After some research, I decided to try a white noise machine, and I got one this Christmas, part gift from my parents, part gift to myself. I had read that the machine sometimes takes a week or so to get used to, and also to find the settings that work best for each individual, and that was the case for me even though I'm so used to constant white noise. (There is quite a lot of difference in tone and volume on the different settings available.) I tried out different tones during waking hours for the first week, while I adjusted to it, but it soon faded into the background and I started using it at night after about 5 days.

It's a very simple design and I would imagine it could keep running for a long time without any problems, though of course I can't give you a personal account of that. No, it's not fancy - but to me that's a plus because to use internal fans rather than a recorded sound (which is what lots of other noise machines are) means that there is no 'loop' in the noise - it's a very even, consistent noise, much more so than an actual fan, actually.

I've had the unit on almost constantly for 3 and a half months now, and I absolutely love it! I'm honestly not sure I could live without one now!! It actually blocks out more noise than my large fan ever did. I don't find it irritating at all, which I have to admit I was initially concerned about.

I'd recommend this machine to anyone struggling with their sleep or with needing a quiet environment, and most definitely for anyone with any kind of noise intolerance! Honestly, I couldn't rate it higher than I do!!


Perskindol Active Gel

A fellow ME blogger, Living Life from a Bed, recommended this product to me, and I'm SO glad she did! I've used 4head for migraines for years - a cooling menthol based stick that you rub on your forehead which instantly cools the area and essentially blocks the pain receptors - but it hadn't really ever occurred to me to find a similar product for pain elsewhere in my body. Perskindol is pretty much exactly that. It's a gel containing various essential oils including menthol and wintergreen (it smells basically like root beer, lol)

I've pretty much instantly taken to this gel. It smells quite strong but not offensive like some of the products on the market like Deep Heat etc. (which are so strong they stink your room out for days, plus make your skin feel like it's burning - they're the reason I hadn't tried any of these sorts of products for my ME pain) Once you've applied the gel, it can take a few minutes to really kick in, but then the area gets cold and the pain is reduced. I've found it's particularly affective for my RSI and for my feet which have quite a bit of very painful oedema right now. I hate that it's going to cost me that bit of money each month, but I'm afraid it's just become an essential!!


The Book Seat

This product is so simple it's genius! I literally couldn't read books without it, because it's too painful, and my hands are too weak, to hold a book open. (Though I've only been able to cope with audiobooks recently because of neuro issues, I ultimately by far prefer reading the book myself and this is the only way I'm able to do so now.) It's perfect for using on a bed, too, because you can position it on any angle. It needs little explanation, really. Your book (it holds even a large hardback book) sits on it, the pages are propped open by a transparent plastic bar at the front of the 'seat' and it's full of polystyrene beads so it can be moulded into the perfect position. I LOVE my book seat! ;)

Wheat Bags
As they sound, these are bags filled with wheat, which can be heated in the microwave (or cooled in the freezer) and applied to areas of pain. They're much better than hot water bottles, both because they're much more convenient, and because they mould to your body. You can buy them in heaps of places nowadays - just search them on google. :) They come in all shapes and sizes, to best fit different areas of your body.


Cushtie Pillows

These are absolutely my most necessary pillows - I've had several of them on my bed for years now, and they're just outstanding for my needs. I have an astounding number of pillows on my bed. Body pillows supporting me right down my body, pillows for my head, pillows for my legs, and pillows supporting my arms. And without them I'm basically a gibbering wreck of pain.

Cushties are small pillows filled with tiny polystyrene beads, with a stretchy soft cover which allows them to be moulded to your body in a way that no other pillow can be. They have the perfect amount of beads in them, unlike every other similar pillow I've ever tried, which were all over-stuffed and so nowhere near as comfortable. They're so soft and just, well, perfect!! I use them to support my neck/head, and my arms, and often mould one into my back, too. I'm really touch-sensitive and have just found cushties to be the best, most gentle support for my body! I just counted and I'm a little embarrassed to say that I have 8 of them currently on my bed. Oops. :D


Magicool Spray

If you struggle with getting hot flushes, night sweats, or really, really overheated, magicool might just help you! It's a cooling spray, described by the company as 'your personal air conditioner in a can'. Again, this is something which the first time I tried it, I was convinced it could only be just a gimmick - but was quickly convinced otherwise! It doesn't need much explanation. You spray it either on your skin or in the air around you, and it provides an instant cooling affect which lasts quite some time. I have no idea how it works, I just know that it does. ;)

You can get a fragrance free version, so it's probably safe for the majority of ME/CFS patients, unless you have MCS or something similar.


I hope these recommendations might help you guys - I'd love to hear from you if you try any of these items, or already have, and what you think of them! :)

What other products have you found which help you deal with your illness and pain?

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! :)

Six Products I couldn't live without!

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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.

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.

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!

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?

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! :)

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

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An Ode To Insomnia

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??!!??

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!!

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. :)

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?

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! :)

An Ode To Insomnia

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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.

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

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! :)

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

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Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

I noticed today that there is a new article, and video, by The Wall Street Journal reporting on the Lyndonville New York cluster of CFS - one of around a dozen such clusters around the World. It's the best press I've seen in quite a while, and it was such a nice change from all the bad press that the PACE trial has given us, that I decided to post it here. :) I wish it would get picked up by the UK news channels, but I imagine I'll be disappointed there!!

The article, written by Amy Docker Marcus, is titled The Puzzle of Chronic Fatigue Syndrome and reports on Dr Bell's (the GP for the area) efforts to research the possible role XMRV may have played in the cluster in his town. He has been treating people affected by the outbreak since the mid 1980's, and this seems to be the closest they've come to finding out what happened to cause such a cluster. Many of his original patients are still very ill, in a lot of pain, & often severely disabled decades after their initial symptoms began.

Dr Bell has had many of his patients from Lyndonville tested for XMRV, a recently discovered retrovirus which could possibly be part of the cause of Myalgic Encephalomyelitis (ME) / CFS, and has found that a high percentage of those tested are indeed infected with the retrovirus. I can only imagine both the hope and fear this has caused amongst his patients. Hope that finally something will be done, that a treatment may be found, or even just a single, validated test for the illness. Fear that this new retrovirus research will be repressed, like other such projects have been in the past.

You know, it strikes me as insane that a disease known for occurring in these types of clusters would be painted as psychological. In what universe does that even make sense?? Essentially what the psycho-social rabble are saying is that these clusters are caused by some kind of mass hysteria. What a load of rubbish!! There are hundreds of people in some of these clusters - it's completely realistic that every single one of them is putting it on, or is in some way mentally ill. So many clusters, across the whole world, many of them beginning at around the same time - that's something that immediately and obviously says there's a good possibility of the cause being an 'infectious agent' - viral or environmental, to any right minded person. It's a tragedy that the issue has been either ignored or maligned by doctors, researchers, and the media ever since the 80's!

Here's a copy of the WSJ Video report. :)

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! :)

Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

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So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

With all the media rubbish about 'ME/CFS' that's intensified over the last couple of weeks - not to mention the recent changes to the UK benefits system which are going to make things much harder for those with Neurological ME, I've found that quite a lot of frustration has come to the surface which I usually try to keep more or less buried because it takes too much energy to deal with all the emotions.

Something I really hate is that so many people, particularly in the UK, see M.E. as some kind of 'malingerers disease', where we enjoy sitting around being lazy each day, living the high life, never having to bother with work because of our state benefits!! And well, you can't blame them, in some ways, because that impression has been thrown out into the world at every opportunity, through the media, medical schools, psychiatric research projects, and the opinions of the benefit agencies & insurance companies - not to mention the chronic over-diagnosing of this illness, where people who are not neurologically ill are given a diagnosis of ME, (Or rather, ME/CFS) when they are actually burnt-out, depressed, or in some other kind of fatigue state. But the truth of the matter is that those beliefs expose an inherent ignorance about what life is actually like for those of us with severe ME.

I've spent the last 15 years hiding as much of this illness & it's affects as is humanly possible from the people around me, out of shame and fear. It shouldn't have to be that way. We sure wouldn't expect someone with Cancer or Aids to feel they have to do so, right? And I don't want to be that person anymore. I want to get used to being more honest about what I'm going through instead of pasting on a smile and pretending I'm fine while you're here ... then crashing the moment you walk out the door!


I've had M.E. for 15 years now, & I don't think I could even begin to explain the utterly devastating affect this illness has had on my life. I lost a career that I loved. (nursing in a NICU unit, which I fought to keep pursuing for 8 years after I first became ill, despite extreme exhaustion & pain - I certainly don't think that is representative of a person who is looking for an excuse to not work.) I lost the ability to have stable & secure finances; the chance to find a partner who loves me, settle down, and have a family; a whole host of friends who couldn't cope with my complicated situation; my house - as disability benefits (benefits that I actually had to go to tribunal to get, because the doctor who 'examined' me didn't believe in M.E) didn't bring in even near enough money to cover my mortgage (At age 34, I now live in one room of my parents house - a high life indeed!); I've also lost the entire last 7 years of my life (for which time I have been housebound, very often bedbound. For the whole of the past year, I've been unable to even sit up in bed for more than a few minutes at a time - and even that causes pain & extreme fatigue afterwards.); My social life; The ability to walk my two dogs who I love more than life itself; and the right to live with dignity and respect are all gone now too - & that's only the things I can think of off the top of my head!

If one of those people who believes I'm just a malingerer could spend just one week living my life, there's no question in my mind that they would change their position.

Right now, about the only contact I have with the world around me is either through my carer, or on the internet. (I count myself lucky to have that ability as there have been many times over the years when even that was impossible!) Believe it or not, I found out a couple of days ago, on facebook, that my father (Whose house I live in) is making the move to self-employment. I barely see him for a few minutes a week - and the result is that I have no idea what's happening in the lives of my loved ones.

If I manage to go to the bathroom more than twice in a day, then that's a very, very good day. Two times a day is normal - and even that is a battle! I fight with my own body to have a shower once a week. It often takes me up to 2 hours because the crushing fatigue is so disabling that I have to rest every few minutes even using a shower chair ... but I'm too stubborn, proud, and guilt-ridden to ask for help. (though there have been periods in the last few years when I've had no choice but to have my carer help me bathe - Trust me, that is NOT something I would have put up with if I could simply make myself well again with exercise, diet, therapy, anti-depressants, etc etc etc!!!) I'm then wiped out for 2-3 days afterwards. I can't remember the last time I wore make-up regularly, I haven't had a proper haircut in years ... we just take a pair of scissors to my pony tail when it's getting annoyingly long.

Speaking of guilt, that's something else you wouldn't want to live with. My best friend before I became severely ill, has now been caring for me for the last 7 years. She's amazing and I literally couldn't survive without her, but I live every day with the guilt of the burden I'm placing on her. Worse, she's now developed post-viral-syndrome herself, & I can't help but be worried that she may have picked some viral trigger up from me. In addition, since my carer has been so ill, my 60yr old mother has had to start helping out with my laundry, and other jobs, only a few years after she herself became ill with Multiple Myeloma. The pain of all that guilt sometimes feels almost unbearable, like a physical weight on me!

I live everyday in pain, rationing my painkillers as well as I can because I hate taking them. (Another guilt to live with!) Dull pain, Sharp pain, numb, buzzing, urgent, weighted, spasms, migraines - the list goes on!) Sometimes my pain is so extreme that even wearing clothes or the weight of my (lightweight!) blanket on me is too much. I struggle to spend even a few minutes talking with a family member, and crash right afterwards. Light hurts my eyes. Noise hurts my brain. Both send me into a state of overload where it feels like I'm being interrogated! I have blood pressure drops when I stand (or even sit) that make me feel like all the energy is draining right out of my feet. Intense adrenaline rushes, followed by huge crashes. Palpitations. Crazy sweating - as though I have a bad fever only I don't. Insomnia, hypersomnia, (Oh, the irony!!!) sleep cycle reversal. Actually I have a list of symptoms so ridiculously long, (I haven't even got close to naming them all here!) that I felt stupid when I recently presented it to my doctor - who basically had no idea just how bad things are for me as I can rarely make it to the surgery, and she's unable to do home visits. (& this is one of the best doctors I've had since I became severely ill.)

At my worst over the last 7 years, I've had years where the vast majority of my time has had to be spent in a darkened, quiet room, staring at the wall. I've had months where on my worst days, I would be paralysed for hours at a time, not even able to lift my finger, never mind reach out and take a glass of water to drink.

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My neuro symptoms drive me insane. (Haha!) I swear my iq has dropped 50% since I got sick. I can't remember things, (including both old and new memories) I can't recall words, or I come out with the wrong one. (That of course is providing I can actually find the energy to speak at all) I have brain fog so severe at times that I trip over my words and certainly can't make my mind focus on something I want to do, no matter how important it might be. I can't fill in a form by myself. I can't make my mind up about anything. I have problems hearing speech, or the tv, not to mention making my mind understand what's being said. I constantly zone out. A simple conversation with my best friend is exhausting and after a few minutes I just can't concentrate anymore, and my body starts to feel the post-exertional malaise - cos yes, even mental activity can set that off! (The brain is a muscle, after all, which requires energy to function!)

On top of all that, there's been loneliness, grief, sadness, anger, the inability to attend funerals and weddings, or important family events, Christmas days spent in bed. And the stigma, judgement & ignorance of people who don't understand (& aren't willing to try because of all the negative media about M.E.), not to mention medical care that can barely be called care. It's more than enough to boot you in the chest when you're really down. This illness just eats away at you, your life, & your coping abilities. It destroys family life. It damages your sense of self and worth. It takes away the liberty to be the person you feel really are.



How can anyone who's never lived with M.E. ever really understand what a price we pay to live this 'high life'??

Nobody chooses to live this way. It's forced upon us - and we have to learn to deal with it. The only other option is unthinkable - and we fight that option along with all the other fights, for the sake of the people who love us - and because we really do want to find enjoyment & happiness in our lives.

I just wish that the people spinning ME as a psychiatric illness would stop and listen for a moment. Choose to care about us as individuals and realise that something much more is going on here.

Why doesn't medicine learn from past mistakes. Parkinsons, MS, Aids, Epilepsy - so many illnesses, all treated with disbelief, prejudice, and cruelty, & labelled without scientific proof as hysteria, depression, hypochondria, etc. Those previous beliefs were proved to not only be wrong, and unjust - but also stupid and dangerous because so many people died before the medics and governments started to pay proper attention - not to mention the millions of lives which were wrecked in the process.

ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive - but really, why would anyone be surprised by how strongly we feel about this and how hard we're willing to fight to create change??!!?? We're desperate. It's that simple. I've been living with ME for 15 years, and in that time, nothing has really changed - the same old stuff is happening over and again. I'm not radicalised, I don't send 'hate mail' or bomb cars, for heavens sake. I just don't agree with anyone who says that my illness is all in my head, and I'm willing to say so.

And that's my epic rant complete. (Sorry about the crazy length!!) All I can do now is try to move on, to pick up the pieces all over again and deal with the emotional fallout of this latest injustice ... and remind myself that change will come! Facts & evidence will eventually appear that are absolutely irrefutable, like they have for other illnesses before ours, and action will have to be taken.

What have your greatest losses been over the course of your illness?

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! :)

So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

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Dental Emergencies! What do you do when you're bedbound???

I've been thinking a lot recently about how there are so many disadvantages to being confined to your bed with M.E. that healthy people would never even consider!

Right now, I have a bad toothache. One of my wisdom teeth broke badly, months ago. Now, if I was one of my healthy friends or family ... actually, even semi-healthy, I could just zip down to my dentists, and get it pulled tomorrow! No problems.

Not for me. For the last few months I've survived on a couple of visits from the domiciliary dental service, who have put in temporary fillings - there's little else they can do. The last one fell out right before Christmas ... and I've been so ill since then that I haven't even been able to deal with a quick home visit from the dentist. So, predictably, the tooth was eventually going to start causing some major pain. And it looks like now's the time it's going to start playing up.

What to do??? Obviously I'll have to get the dentist service to come see me ... but I KNOW this tooth needs more than just a temporary filling. In fact, I'm not sure if it's not broken so badly now that that might not even work temporarily. But, I have to try at least. It will make my symptoms flare up to have to deal with a) having people visit me here, and b) messing my sleep patterns around, because my body clock is reversed and I sleep in the day. But it's either that or this toothache is going to get worse and worse. Especially with it being a wisdom tooth.

If they can't do a filling, or if it doesn't work, I honestly don't know what I'm going to do. I won't, I suppose, have a choice but to find a way to drag myself to the surgery, deal with sitting upright, in a busy, noisy, bright, overwhelming, germ filled waiting room, (it's a dr's surgery too) in order to get it pulled. God only knows how I'd cope with that ... or what kind of relapse it might cause afterwards, not just from leaving the bed/house but also from the trauma of the treatment itself (especially as I have bad problems with my TMJ joint (my jaw) which makes dental treatment really painful)! I still haven't recovered from ONE family day at Christmas, 2 months ago, and I didn't even leave my bed for that.

So yea, there are so many things that healthy people wouldn't have to give a second thought to, that are major missions for people like me - especially with the post-exertional issues that come with M.E. - this just being one example! I wish more people understood what life is like for us.

Anyone have any experience with situations like this, or ideas on the best way to deal with it? Has anyone ever had a dental surgery 'rush' you through the people waiting so you don't have to sit in a waiting room for ages, or give you a room to rest while you wait, or something??

Twitter Responses From Pantoeffelchen, who send over a really good idea for if my surgery isn't able to rush me through waiting, I could perhaps lie in the backseat of a car and have them come get me when they're ready for me. Definitely could help at least, especially if I brought my body pillow etc in the car.

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! :)

Dental Emergencies! What do you do when you're bedbound???

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