Alison/Tink; Welcome everyone to our Fifth
official blog discussion. Thank you for joining us on our journey.
Jodi, would you like to start?
Jodi/hbird; I think friends and family
members of M.E. patients wonder what we do all day sometimes.
They guess we must just sit around being
bored, watching TV all day and getting more bored and just be dying to go and
have a big fun night out for a change.
But being so ill is quite different to how
you might expect it to be, as lots of things are.
For one, most of us are too ill to sit. Our
hearts can't cope with the extra work it requires. Many of us dream of one day
being well enough to have a good sit every day. (I'm definitely one of them!)
Alison/Tink; When people do not understand
how the tiniest of things can seem like rocky mountains, it can feel so
frustrating, and often like we are being judged and belittled.
For instance, if someone asks me to do
something, and I say I'm busy, can I do it in an hour, and they ask what I am
doing- I may say cleaning my teeth, or resting. They do not realise they are
actions, and actions that take time to recover from! I feel so protective for
that, for others to know how resting is an action, how eating a meal is
exhausting and painful. How combing your hair, or reading a letter, takes
planning, hard work, and recuperation!
Jodi/Hbird; Yes, we need to think about
everything we do and nothing is just done by us ‘automatically’ like it was
pre-illness. It’s so annoying!
Most of us are too ill to watch TV all day
as well, although those who can manage a bit or even a few hours of TV
time each day will usually do so and enjoy it.
Having severe M.E. is tedious, monotonous
and horrible for sure. But when getting through each minute, hour or day is so
difficult and requires you to constantly function so close to your mental and
physical limits, there really isn't an issue with boredom. You don't get bored
when you're under such intense stress!
Every small task is such an effort with
severe M.E. Brushing your teeth, washing and brushing your hair, bathing,
toileting, dressing, eating, drinking- everything.
While most of us would love to somehow
magically be well enough for a night out with friends, I think most of us would
make a different wish, given the choice.
I'd much rather have had my days be less
bad, than just have an occasional good day. The urge to lessen the 'hellish
quotient' of every day is so much stronger than my urge to just have more fun.
I can't even begin to express how bad life with severe M.E. is each day. It's
unbearable.
You barely manage all the tasks of daily
living each day (or some or most of then anyway), and it takes everything you
have. The days seem to start again too soon. Finally you get things done but
before you've recovered from that, it's time to do them all again!
Alison/Tink; It is amazing isn't it how
quickly time goes overall, yet a moment can feel so very long.
Jodi/Hbird; Yes, that’s just it Tink. My
years seem to be passing so quickly and yet so many days took an eternity to
pass due to extreme pain and even now when I’m a bit improved, the days seem
long…as well as too short. It’s partly because only such a small part of the
day is useable I suppose. We have so little useable time, time where we can do
things, compared to normal.
Every task either takes extra planning,
special timing, modification, or has to be done either very fast or very slowly
too.
Alison/Tink; Absolutely, which can be so
confusing for others!!
Jodi/H bird; Explaining it over and over is
not fun or easy, definitely.
Being so physically limited wouldn't be
quite so bad if you at least had an uninjured brain, I often think. But having
both really makes things difficult.
One task that most of M.E. patients wish
they could skip sometimes, or always, is dental care. It's necessary and has to
be done at least once a day if at all possible but it takes so much out of you.
I'd be okay with it once a week but every day is so hard - and I'm far less ill
now than I was, and than many other M.E.ites are.
Some patients use textured finger covers to
brush their teeth, and others have electric toothbrushes.
(If you're putting off buying one due to
environmental concerns, but know brushing really hurts your arm so you can't do
it for very long at all,,, save power another way I say and buy one today!)
Alison/Tink; I too agree with your
suggestion Jodi of using electric toothbrushes. I actually own two for when one
runs out I can charge the other. Although in general I loathe vibration, I find
it much more tolerable than using a manual one where my head is forced side to
side where my neck has no strength enough to withstand the brush strokes. I
would recommend closing your eyes as the vibrations can cause visual
disturbances.
Jodi/Hbird; Yes me too, I loathe the noise
and vibration of it sometimes but for me it’s worth it. Recharging is a bit of
a hassle as well, as I always forget, I may have to nick your idea there.
Good dental care is extra important in M.E.
too. We may be more prone than most to tooth loss, for one thing. Many of us
are also unable to visit a dentist, so prevention is key.
Alison/Tink; I did not know that we are at
more risk of teeth loss Jodi, thanks so much for pointing that out to us all.
Jodi/Hbird; I wish it wasn’t the case!
We all have different tooth care issues.
What is driving me nuts right now is finding the motivation/mental clarity to
remember to floss each day and dealing with the timer on my electric
toothbrush. If I brush (lying down) for two minutes, the brush pulses - which
makes my brain overload and go into a seizure state which feels dreadful, and
lasts 15 minutes or so. I hate it so much but can't find a timer-less model
anywhere. So I end up brushing my teeth for much shorter periods than I would
normally, just to avoid the 'helpful' timer feature.
(I've tried brushing about a minute, then
turning it on and off again, but having to remember to do that is almost as bad
as dealing with the timer going off. I need so much to be able to switch off
mentally when I brush - no thinking or forced attention getters when my head is
full of brushing moves, and in 'tooth-brushing daze'!! My next step is to set
up a timer or sand timer or something.)
What are your current tooth-care issues
Alison?
Alison/Tink; I'm so sorry about that Jodi, that
must be so difficult and distressing! Let’s see if I can help you find one.
I firstly would like to precede my issues
by saying that I am so fortunate that I am in the position that I can live the
sort of life that enables my M.E. to be the way it is. If not, I would have a
lot more severe symptoms and be a lot more ill. I am able to live quietly,
spend literally 99% of my time alone, and have a father who is my carer to do
some jobs for me. This makes the so-called little jobs like brushing teeth
somewhat easier, just not simply easy. But I remember vividly when just
breathing was the hardest job in the world and I simply could not do hardly
anything else. I've previously been in the position of being able to only brush
my teeth once a week, and the very odd twice a week was such a luxury!
So much love to everyone who is struggling!
So, one issue for me is that I have had
terrible mouth ulcers my whole life. Mouth ulcers are a typical symptom of M.E.
Big white ones. Until I started a specific regime, I would always have at least
one on the go, but sometimes multiple ones, which as a child was very
difficult.
But for the last, maybe 10 years, I have
had a lot less, hardly any really in comparison. My regime consists of brushing
my teeth once a day with sugar free Sensodyne original (they are stopping
production of this and replacing it with Sensodyne Classic apparently) (Also,
note; Normally, I avoid chemicals where I can. I used a natural tea-tree
toothpaste for 10 or so years, but the pain caused initially by my wisdom tooth
made me dread meal times, so I decided to try Sensodyne Original, the only one
without sugar or fluoride.
Then at night time, rinsing my mouth with
homemade mouthwash that consists of water, rock salt and tea tree oil for as
long as I can, and then during the night when I wake and take my meds, I suck a
piece of sugar free liquorice. As you may know, sugar, honey or liquorice are
the best natural treatments for ulcers. I have a bad sugar allergy so liquorice
is my only option of these. I suck it during the night so as to leave the
longest time between next drinking or eating which obviously washes the
liquorice, or other treatment, away.
Between brushing my teeth, my mouthwash,
and liquorice, and eliminating food/drink that I am allergic to, as I said, my
ulcers are much more limited. Although I still get torn and frayed skin on my
lower lip.
I have been having trouble for the past few
years with a wisdom tooth. There is simply not enough room in my mouth for it,
so one of my front teeth is being forced out of position, and said tooth is
painful. Also my teeth can take forever to come through. My wisdom tooth has
been coming through for about 3 years now (moving for 5 years or so) and is
still only half uncovered. The skin, gum and cheek around it get swollen,
painful, and bits of the gum die layer by layer which I have the job of then
ripping off with tweezers. I had a Dentist come to my house, but without an
X-Ray to exclude nerve entanglement, he would not remove it. I am too ill to go
to a hospital for an X-Ray so am forced to be left to deal with it. He did
perform a desensitizing treatment, which I would like to tell of a possible
Warning. As I have mentioned in a previous blog discussion, I had a severe
relapse in July 2012. I went from having gotten well enough to being mostly
house bound (able to walk along my drive way, which is technically part of our
house, but as is in open air etc) and completely self sufficient, with being
able to be around my father for periods during the day, to suddenly again being
predominantly bedridden and a heck of a lot iller. Looking back, the only
difference and possible cause, was this dental treatment I had two weeks prior.
It was a desensitizing treatment, containing what I was told was a thousand
times higher fluoride than usual toothpaste (I use fluoride free toothpaste due
to my stomach conditions) and the same desensitizer found in Sensodyne but at a
much higher potency. Just mentioning that in case.
Jodi/Hbird; I’m so sorry to hear about your
ulcer problem Tink, they are such horrible little things aren’t they?
(Rhetorical question!) And about the wisdom tooth troubles as well. They must
be really stressful at times. (((((((((((Tink)))))))))))
I have some thoughts about ulcers,
1. SLS has been implicated in exacerbating
oral ulceration. (Sodium laurth sulfate.) Some Sensodynes have this in and some
don't as far as I can make out...argh, confusing internet LOL.
Some people say their number and frequency
of ulcers drops form avoiding SLSs alone. It does also seem to have other
nasties in such as parabens (hugely toxic) and Titanium Dioxide which is also
to be avoided, so I have read.
2. My ulcers, well, I used to have a lot
more of them before starting to take a B complex 100 product a few times a day,
plus B12 coenzymated lozenges of 1 mg or so, plus a good extra folate product.
You probably know this already and are
taking all this already...but just in case not, low levels of these vits are
one of most major causes of ulcers and taking even just the B12 can stop them
in many people. I used to get that awful red corners of mouth thing
too...before extra B vits, horrible!! B vits can also help them heal faster
generally as well I think.
Alison/Tink; Your knowledge always astounds
me!
Thank you for that. I did not know this
about Sensodyne. I use the original as is their only one without sugar and
fluoride. I seem to be fine with it but thank you for pointing it out for our
readers!
I self administer Vitamin B12 injections,
so important.
But in all, my aforementioned routine of no
sugar, my mouthwash, and liquorice, have helped so much.
Although my stupid Gp forcing me to be on a
medication containing sugar for over a year because he refuses to answer my
correspondence has brought back frayed lips! Doctors are horrible! Just because
I can not go down there in person, they think they can ignore me.
I also get blood blisters in my mouth which
are common with viruses.
Jodi/Hbird; Also, I’m not at all surprised
to hear that a massive dose of something as toxic as fluoride could cause a
severe relapse, though I am very saddened to hear it. Avoiding fluoride in
water and toothpaste etc. makes an enormous amount of sense to me. (Anyone
interested in this topic might like to read the book ‘The Fluoride Deception’
among others.)
Alison/Tink; This makes me so sad! To think
my severe relapse that has left me needing more help, was due to avoidable
actions.
Jodi/Hbird; Tooth care is very 'A stitch in
time saves nine' - just like M.E. itself. For anyone struggling with dental
care in a big way I've written a few notes - and we both send you are sincerest
commiserations!
1. Try and brush and floss daily. Use a
finger brush or electric brush and see if you can do it laying downing
2. Fluoride in toothpaste is unnecessary
and just gives your body more work to do in detoxifying it.
3. Just like anti-bacterial soaps,
anti-bacterial mouth washes are far more about marketing hype and selling
products than good science. Mouth washes containing alcohol, sweeteners,
colours, flavours, fluoride or anti-bacterial agents are not a good idea. You
can even actually make your own toothpaste or toothpowder based on non-toxic
bicarb soda. I started doing this this year and it’s so much nicer than what I
was using before, as well as healthier.
4. Instead of killing the good bugs in your
mouth with anti-bacterial products, increase their population by using a
powdered probiotic product, mixing it with water and swishing it around your
mouth before swallowing it.
5. Investigate or read a bit about dental
revision if you have mercury fillings or root canals as both can have huge
negative health impacts.
6. Avoid sugary drinks and sugary foods
that stick to the teeth. Even small amounts can do harm if they are in contact
with the teeth for long periods of time. For your teeth, 3 sugary drinks drunk
fast is better than 1 drink sipped very slowly! Strictly avoid crappy sugary
'meal replacement' drinks such as Ensure. They can DESTROY your teeth!
7. Wait an hour after eating to brush.
Alison/Tink; Great tips Jodi. I would also
recommend Floss sticks instead of floss, easier on your hands, although still
not easy.
Next is that I Disinfect my toothbrush
every couple of weeks. I would recommend this practice too.
A note for people with sensitive teeth, if
you use desensitizer toothpaste, such as Sensodyne, the instructions are not
clear. (They want you to use as much as possible to raise their profits, sad
but true!) It is not about how often you use it, but how long it has contact
with your tooth. So instead of using it several times a day, it is far more
useful to dab a bit on your tooth at bedtime and leave it to work overnight.
Lastly, I would also highly recommend using
a Tongue scraper (The hard kind not the jelly kind). Most people with M.E. have
a diet of mostly soft food. This accumulates on the tongue leaving a covering
that does not get removed by the not eaten harder foods. If you can not cope
with plastic, try a spoon, works almost as well.
Oh, and if you are buying a particular
toothpaste or product hoping it will be good for your gums or throat, be sure
it does not have mint in, as mint actually closes the pores in your mouth
inhibiting the absorption you were hoping for.
Like yourself Jodi, I personally brush my
teeth in bed with a bowl to spit into. Head position can be difficult.
Especially if you sit or lay, as your head will most likely not ever be
perfectly vertical, and so dribbling is likely. So as well as the spit bowl,
having a t-towel or tissues close can be helpful.
Jodi/Hbird; For sure and I like all your
tips Tink! I’ve never heard of floss sticks but am going to check them out
today…or at least this week!
Alison/Tink; They are actually called by
various names depending on each manufacturer. I've seen them called Plaquers,
Flossers and such. I will put a few in with your Christmas post sweetie. Just
be gentle as they can hurt if you are heavy handed, especially at first.
It's worth noting also, Dental floss and
dental tape are usually confused as the same thing, but one is round and thick,
the other flat and thin, so less likely to hurt your gums. I think the tape is
the latter, though not certain.
Jodi/Hbird; Good nutrition is also vital to
healthy teeth. Calcium is only one part of what is needed, we also need
magnesium.
Alison/Tink; Especially because the human
body can only absorb calcium if they have magnesium too. Therefore, note, do
not bother buying any kind of calcium supplements if they do not contain
magnesium as it renders the supplement useless and you are wasting your money.
It's also just worth noting here, if you
take some specific kinds antacids, you can not take some other medications for
at least an hour each side, as it will stop the absorption of said medication.
I point out, that it is not all antacids, just relievers like Gaviscon etc.
This is because they have magnesium in. Therefore it is wise not to take the
aforementioned calcium tablets containing the necessary magnesium in for at
least an hour either side of your medication.
Jodi/Hbird; Vitamin D, and vitamin C at
adequate levels is important too - and so much more. Just like eating liver is
good for your liver, eating bone broth is good for your teeth and bones as well.
It is so important to know that tooth
health and mouth health is inextricably linked with your overall nutrition. If
you have good nutrition your teeth will be able to resist the damaging effects
of bacteria in your mouth. Good nutrition is preventative of tooth problems and
can also work to improve them after the damage is done, more than you might
think.
It is a bit awkward but after writing my
rough text for this blog (which Tink actually amazingly and very kindly TYPED
OUT FOR ME!), I wrote a whole piece on preventing and treating dental issues
with nutrition after reading some brilliant books on this topic that I learned
an enormous amount from. The finished paper is on the Health, Healing &
Hummingbirds site and you can read it here if you’d like:
Alison/Tink; Thank you so much for that
link Jodi, your medical knowledge is simply astounding!!
Jodi/Hbird; Proper dental care as well as
good nutrition is so important but so difficult when you are very ill. Better
to have clean teeth but hair that looks like a bird's nest, and a messy house,
I guess. Though many of us would do the last two of these anyway!
Alison/Tink; You sweet lady. Typing it up
was a pleasure treasure! You did a wonderful job with the first draft, I so
appreciated it and I'm sure this will help many.
Yes, It's Such a shame isn't it, that such
ill people have to rationalize like this. To have to prioritize one thing over
another. To know I can't do so and so if I want to be able to get my dinner out
of the fridge to eat.
Jodi/Hbird; Yes, it just plain sucks when
you have choices to make constantly but all of them aren’t great! You’re
constantly choosing the less bad option, sadly.
Wishes for better health and sparkling
strong teeth to you all.
Alison/Tink; Hear hear, and to yourself
Jodi!
Best Wishes, Much Love and Blessings
Jodi and Alison
Aka The Tinkerbelle and Hummingbird M.E.
Blog x x
©TheTinkerbelle+HummingbirdM.E.Blog
