NATTYSNONSENSE
BLOG POSTS 2011
(via Wordpress)
Daily
Mail (Daily Fail) Quotes
“Mr
O’Shea claims the maximum disability living allowance, which is meant for
people who have severe difficulty moving. But that doesn’t seem to have stopped
him getting out and about. In the past few years, the couple have taken
holidays in Alaska, Canada and Australia.”
AND ???
Whilst I don’t exactly agree with Mr O’Shea continuing to claim benefit after
winning so much money, (after all, he could afford so much better than a
mobility car with just the interest alone on that sort of winning) it doesn’t
friggin mean that his disability should stop him going on fucking holiday !!!
“Now it
is claimed — in The Guardian, naturally — that ‘two-thirds’ of disabled people
have been subjected to abuse and threats of violence because of the
Government’s plans.
Do you
believe that? No, me neither.”
“The
mental health charity, Mencap, even squealed hilariously that moves to rein in
the welfare budget ‘could lead to an increase in resentment against disabled
people and even an increase in hate crimes’.
Oh, for
heaven’s sake. The purpose of the welfare reforms is to make sure that no one
is better off living on benefits than they would be working and that incapacity
and disability allowances are paid only to those genuinely unfit for work.”
YES it it
is supposed to be a system to support the genuinely sick and in need… NO it
isn’t working…NO the planned changes wont work… AND NO we are NOT better off on
benefits BUT we have no fucking choice. Our bodies are too sick to allow us to
work… there are limited jobs available, (despite what Maria Miller would have
us believe) and no bloody employer in their right mind is going to hire ME!
I cant
guarantee when I can work, hell I cant even guarantee being able to get out of
bed never mind dressed and leave the house. I don remember anything that’s said
to me, I cry most days, I’m doped on pain meds, I have pain 24/7, I drop
things, I have no strength oh yes and I don’t leave the house alone – so are
they going to employ my retired arthritic mother to come to work with me ?
NO I
didn’t think so !! As for not believing about the abuse the disabled are
getting, I dare you to walk in our shoes for a week! The stares, the looks of
disbelief, judgement, tuts and laughter along with the jeering, cruel words and
challenges when using my Blue Badge or a disabled toilet. (Yes Ive experienced
all of the aforementioned in recent months)
Feel the
urge to read the full Daily Fail article click here:
http://www.dailymail.co.uk/debate/article-2097403/Rollover-time-benefit-lottery.html#ixzz1leNB0T4u
Posted in
Uncategorized and tagged abuse, Benefits, disability, disability
living allowance, Ignorance, journalism
at its worst, welfare budget,
welfare
reforms |
POSTED ON
BEHALF OF SOPHIE (Founder – @oxymoronic82)
What is
the Twitter Buddy Scheme?
@Become_a_Buddy
#TwitterBuddyScheme
Twitter
is already a fantastic outlet for meeting like-minded people and sharing your
thoughts and feelings. People already have a great rapport with many of their
followers and many have already sparked up friendships. So what makes the
Twitter Buddy Scheme different? Well, I’ve noticed that a lot of people feel
very lonely a lot of the time. A phrase exists along the lines of “You feel
loneliest when standing amongst a crowd of people”, and it would seem that Twitter
has this effect on lots of you.
The
Twitter Buddy Scheme hopes to encourage people to reach out to one or two of
their followers, (probably someone they already have a good connection with),
and to become a familiar, caring figure in that person’s life. It is hoped that
your Buddy will be your first port of call when you need some support and that
they will hopefully become someone you learn to rely on and can become
completely open with in time. It should mean that you can have that one person
that will genuinely be there for you. It is hoped that each pair of Buddies
will provide a secure environment for each other where there will be no taboo
subjects, no judgement, no rejection; just pure, honest friendship. It can be a
daunting prospect for many people to be completely open and honest with another
person, but the idea is that you build up a connection over time and the level
of openess can be at a level suited to each pair – for some this may simply be
checking in every now & again so that you know you’re not alone; and for
others it may be daily contact or could even lead to a life-long friendship.
Whether
you chat openly via tweets or privately via Direct Message (DM) is up to each
pair of Buddies, but please ensure that you chat via DM only when sharing
personal details or any information that you wish to be kept private. Over
time, people may want to swap to email, Skype or even phone calls. This is
fine, but again, please be careful and responsible when swapping contact
details. TRUST IS KEY.
FREQUENTLY
ASKED QUESTIONS
What if I
really need some support but my Buddy is unavailable?
It is not
expected for Buddies to be online 24/7, but more to be a constant, reliable
source of friendship and support. So even if you don’t get a reply until 12hrs
later because of work, time zone differences, or sleeping, you will always get
a reply eventually and you can be reassured that it is because that person
WANTS to reply and genuinely cares about you, rather than someone feeling it is
their duty to do so.
I want to
be a Buddy, but I am not online very often, is this okay?
You can
still be a Buddy if you’re not online much, as any amount of support you can
provide will be invaluable to the person receiving it, but each Buddy needs to
make their availability and expectations clear from the start. If Buddies feel
pressured to be online more than they usually are that will leave both parties
feeling inadequate and disappointed, as will making your Buddy feel bad for not
responding immediately.
Can I
have more than one Buddy?
It is
fine to have more than one Buddy, and in fact in some cases this would be
encouraged in order to provide potential around-the-clock care, but please make
sure you don’t have more Buddies than you can cope with – you want to be able
to give your Buddy your full time and attention when needed.
How do I
get paired with my Buddy?
There are
two easy ways to get paired with a Buddy. Firstly, you can approach your
followers and offer your Buddying services to them – this is particularly good
if you have certain people in mind that you would like to be a Buddy for.
Secondly, you can tweet under the hashtag #TwitterBuddyScheme stating your
willingness to be a Buddy.
TWITTER
BUDDY SCHEME TEMPLATES
Invitation
for Requests – I am happy to be a Buddy #TwitterBuddyScheme
General
Request – I would like for someone to be my Buddy #TwitterBuddyScheme
Direct
Request – I am very interested in being your Buddy.
It is
perfectly ok for you to decline this request
Declining
Requests – Unfortunately I have already reached my Buddy limit and therefore I
have to decline your request
PLEASE
REMEMBER that this is not an official service, nor are Buddies trained. This is
simply a way of connecting people at a more personal level so that everybody
has the chance to feel worthwhile and cared about because EVERYBODY deserves
that.
Sophie,
Founder – @oxymoronic82
Posted in
Uncategorized and tagged Buddy, Twitter, Twitter
Buddy Scheme |
I have
the following tests next week:
BP (bone
profile)
ESR FBC (full blood count)
FGL (fasting Glucose)
FLP (fasting lipids)
GGT
(GammaGT /MCHfT)
LCRP
(C-reactive protein)
LF
(Liver Profile)
LTF
(Thyroid function/ MCHfT) PR (proteins TP/Alb)
UA (Urate/ uric
acid) UE (renal profile /
U&E/creat)
3
tubes: 1x Fluoride Oxalate (grey top)
1x EDTA (lavender top) 1x SSR Tube (Gold Top)
I went in
to ask doc for liver function and thyroid tests… said jokingly, might as well
do everything while im there… think she took me TOO seriously !!
Wonder
what the results will be…. Normal No Action is the usual response … *sighs*
Posted in
Experiences &
Treatments, Fibromyalgia and tagged full blood
count, thyroid
function, liver
function, thyroid
tests, pr
proteins, c reactive
protein |
Hmmm, my
1st attempt at making biscuits was not the most successful, but not a disaster
either.
The honey
and JD ones are yummy. Yes I really did put Jack Daniels in the mix, with
orange blossom honey. Just a smidge of each.
The plain
ones melt in the mouth but are a little bit like shortbread.
Dark choc
chips ones are a little cakey in the middle, as are the banana ones but OH
reckons the banana ones taste fine to him & as hes the only one eating them
that’ll do.
I learnt
that a well greased baking tray is NO good. greaseproof paper is a must
for biscuit banking to avoid the inevitable STUCK bottom.
Im also
limited to space as I only have 2 halogen ovens* on the worktop so can
only use round baking sheets. Timings are never quite the same as given
in recipes due to the FAN effect inside the halogen oven bowl, and 1 side of
the biscuits darken more than the other from the direction flow of the heat.
The basic
dough recipe I used was as follows:
- 250g butter , softened
- 140g caster sugar
- 1 egg
- 2 tsp vanilla extract
- 300g plain flour
If anyone
has any alternative recipes for me to try Id be happy to hear from you.
*My ovens
are similar to this model, but I have to say that having bought 2 different
makes there is a significant difference in the way they cook the same food at
same temperature for same time. I have one that seems to heat up much
more and has to be monitored. I suspect a slight error in the markings
& positioning on the heat dial, so I have to remember to dial it down by
about 5 degrees.
Posted in
Uncategorized and tagged Baking, Biscuits, Cooking, halogen oven,
treats |
Why do we
do it ?
I guess
that depends on what IT is.
In this
case I’m talking about over exertion. Doing things we KNOW are going to
ultimately bugger us up for hours or even fays after. The last few weeks have
seen me get more and more cleaning urges. My house inst a tip or anything, but
I’m no Anthea Turner or Kim & Aggie either !
However,
following a mad moment of organisation in the living room I suffered a flare
for 2 weeks and swore to myself that I wasn’t going to do THAT again !.
So this
week sees me in the kitchen. I have this obsessive need to be in there
cleaning. Yesterday I even gutted the fridge and washed the back door !
So now,
as I write this, I’m sitting in my arm chair, in agony from my head to my hips.
You would think I wanted to rest now wouldn’t you ? Yes me too ! However, I
still have this insane urge to do more. I want to wash the floor and get the
hoover out. I KNOW its a bad idea. I KNOW the hoover is too heavy for me and
that every push is going to hurt, but my head says go on… u can do it. (Its
like having Mrs Doyle in there… “ahhh go on go on go on”)
So,
despite the resistance (after all we know its futile, right?) I have a
feeling that by 6pm the kitchen floor will be moped and the living room will be
dusted and hoovered. Following this will be the hysterical evil cackling
laughter that is my Fibro… (Im picturing Evil Edna at this point).. and
many hours of me moaning and groaning and crying………..
But my
house will be that bit cleaner !!
Was it
worth it ?
Sighs :-\
Posted in
Fibromyalgia and tagged cleaning, exertion, Fibro, Pain, TV characters
I have
just been chatting with a fellow fibromite about the forum we use and we were
discussing the fact that very few of our members seem to like to actually post
on there. It made me think about the problems I have been having recently
so I thought I would blog it.
I have
spent the last 6 months asking people to send me things for my website too, and
I see the tweets being favourited but no one ever sends me anything
I guess
the hard part for some of us is the writing. Both physically (I’m looking
into dragon speak cos my hands are getting so sore now) and emotionally.
People like to read other posts and maybe make a small comment but they aren’t
sure about writing one themselves. Maybe it’s a lack of confidence.
I know until I got on twitter I didn’t have much confidence in my writing –
look at me know – I have a blog and my own site, and I’ve already tweeted more
than 7000 times – although I don’t know what I find to talk about or where
these ‘words’ came from.
I think,
from personal experience, many people fear opinions / rejections. We
often worry too much about how others will perceive us so we stay hidden in a
corner only muttering now and again in agreement with another voice. I
know because it’s how I used to feel. It’s how I still feel when dealing
with face to face situations, using my real name and with people who actually
know who I am.
I become
this whimpering child afraid to speak for fear of being mocked and ridiculed.
Fear of being laughed at or told to shut up.
Using an
alias, using social networking, using my website has freed me up to finally
speak what’s in my head and heart
PLEASE, I
encourage you, if you can, to fight the fear and come on out of the
corner. Talk to use, we don’t need to know who you are on the other side
of that computer screen. THAT is not important. We don’t care what you
look like, what your skin colour is, whether you are overweight, underweight,
16 or 60.. none of that matters. We are here to support each other and all we
want to do is help.
So, if
you think you have something you would like to say, whether it be a small hint
or tip to others suffering from one of our “invisible illnesses” or if you want
to pour your heart out but don’t have your own blog to do it on…. come on
forward, Join us on http://forum.fibroduckfoundation.com/index.php
or visit me at http://www.fibrolife-thrualens.com
I PROMISE
we DONT bite !
Love and
Hugs to you all.
Posted in
Fibromyalgia and tagged Blogging, fear, Fibro, Fibroduck
Foundation, writing
A small
rant inspired by the blog of
http://diaryofabenefitscrounger.blogspot.com/2011/10/we-all-know-someone-who-could-work-but_31.html?spref=tw
and they
say…”we have nothing to fear but fear itself” !! REALLY..I think that we have
to fear the BBC and many other journalists at this time, along with the current
government who see those of us on benefits as nothing more than lab rats and shit
on their shoes. I want to scream out so loud I could burst my vocal chords – I
WANT TO WORK – but I can’t 
my body and mind won’t
let me. I suffer every day with severe pain, anxiety and depression. Find me an
employer who wants me as a member of staff – a person who, may or may not show
up for work, who may or may not be dressed cos their clothes hurt them, who may
or may not spend the day crying at their desk with no possible explanation why,
they just have to, or someone who is more than likely going to fall asleep at
some point just after 11am, 1pm and 3pm because they didn’t sleep the night
before or in fact the week before, and even when they do sleep they are still
tired because their body says so! And the real kicker ? Who wants to employ a
36 yr old woman who needs a chaperone (usually her mother) to go out the house
??!!
my body and mind won’t
let me. I suffer every day with severe pain, anxiety and depression. Find me an
employer who wants me as a member of staff – a person who, may or may not show
up for work, who may or may not be dressed cos their clothes hurt them, who may
or may not spend the day crying at their desk with no possible explanation why,
they just have to, or someone who is more than likely going to fall asleep at
some point just after 11am, 1pm and 3pm because they didn’t sleep the night
before or in fact the week before, and even when they do sleep they are still
tired because their body says so! And the real kicker ? Who wants to employ a
36 yr old woman who needs a chaperone (usually her mother) to go out the house
??!!
Oh yes,
and 1 more thing…. There are NO friggin jobs anyway!! 1.5 million unemployed
and only .5 million available jobs… erm… I know maths is not my strong point
but even I can do that one !! As an employer – faced with 50 applications for 1
job, you select 10 of the best, you interview them, and, let’s say for the
figures in this hypothetical situation, you discover 3 have disabilities, 2 of
them (like me) have many issues that would affect their ability to do the job
effectively on a day to day basis… What do you do ? Spend time and money trying
to train me, only to have to let me go 2 weeks later because I have only turned
up for work 3 times, and I forgot everything you taught me on the 1st day? Or
hire the best candidate for the job? The one who hasn’t had a day off sick in
the last 3 years, who has a healthy glow about them, and doesn’t look like they
are about to throw up on you out of fear! Come on be honest, no matter how much
you believe in disability rights in the workplace, you are never going to hire
me, are you?
I’m
scared to spend time in my garden for fear my neighbours think of me like they
do of ‘Jim’, even on my good days, when I have the energy (and limited pain) to
go outside and potter, I worry about who might see me and assume I’m fit for
work. I even worry when I hang out the washing ffs.
So, BBC, ITV, SKY et al, let’s have some REAL information from REAL people in these situations. How about a FAIR trial, and a little bit of those things they call *COMPASSION*, *EQUALITY* AND *HUMANITY*. Consider your families and friends. Surely you all know at least 1 person, that suffers from an illness or disability, that you are DIRECTLY hurting with these programmes and newspaper editorials you are producing.
So, BBC, ITV, SKY et al, let’s have some REAL information from REAL people in these situations. How about a FAIR trial, and a little bit of those things they call *COMPASSION*, *EQUALITY* AND *HUMANITY*. Consider your families and friends. Surely you all know at least 1 person, that suffers from an illness or disability, that you are DIRECTLY hurting with these programmes and newspaper editorials you are producing.
*Com-pas-sion:
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.
*E-qual-ity
The state or quality of being equal; correspondence inquantity, degree, value, rank, or ability.
The state or quality of being equal; correspondence inquantity, degree, value, rank, or ability.
*Hu-man-ity
All human beings collectively; the human race; humankind. the quality of being human; kindness; benevolence
All human beings collectively; the human race; humankind. the quality of being human; kindness; benevolence
Posted in
Uncategorized and tagged Benefits, disability, fear, illness, welfare |
So what
is the difference ?
Since we
were kids we have woken in the middle of night after a nightmare – maybe even
woken ourselves screaming at the insane and fearful images our mind produces
when we sleep.
For those
of us who suffer from night terrors the difference is substantial. Whilst it is
recorded that night terrors are more common in children, more and more adults
are coming forward to tell their stories.
For me a
night terror may often start as a nightmare, but the fear I feel can stay with
me for hours after I wake up. I may even wake and physically FEAR going back to
sleep. I have been known to scream myself awake or simply shock myself awake,
gasping for a breath, heart racing, sweat pouring off me.
On the
flip side to this, there is the fear of actually going to bed/sleep because of
previous experiences. Such as nightmares, pain, lack of sleep, body temperature
fluctuations.
Many
people with illnesses such as Fibromyalgia, ME/CFS, Lupus, and other such
autoimmune diseases and syndromes will suffer from night terrors. Why? Well,
for me I think it is because our minds often work differently to those people
without these conditions. We may suffer from anxiety, depression and OCD, all
of which cause FEAR thoughts and irrational, illogical ideas we cant control. I
am no doctor or scientist, but I know what I have experienced and I have heard
from others regarding this too and it does seem to tie together in many
instances. There is of course the medication issue, as mentioned on the 2 sites
quoted below. For those of us with these conditions and others, medication will
always play a part in our lives both positive and negative.
Please
note the above is my personal opinion and experience of these Night Terrors.
The following is medical/scientific information obtained from the internet.
What
causes Night Terrors ? Who suffers from them ?
Research has led me to find the following information some of you may find useful :
Research has led me to find the following information some of you may find useful :
The
following is taken from the website:
http://sleep.lovetoknow.com/Night_Terrors_in_Adults where you can read more
about Night Terrors for yourself.
Causes of
Night Terrors in Adults
“There
seems to be a genetic link in night terrors. It is not uncommon for several
members of the same family to have experienced night terrors as children, or
later in life as adults.
There does seem to be a link between mental disorders and sleep terrors in adults even though there does not seem to be a link between the two for children. Researchers have found that adults with night terrors may also have a medical history of one of the following problems:
There does seem to be a link between mental disorders and sleep terrors in adults even though there does not seem to be a link between the two for children. Researchers have found that adults with night terrors may also have a medical history of one of the following problems:
•
Depression
• Anxiety
• Bipolar disorder
• Anxiety
• Bipolar disorder
Even if
an adult with night terrors does not have a mental disorder, they are likely to
have other sleep disorders, medical conditions and lifestyle issues such as:
Sleep
disorders:
• Sleep
deprivation
• Obstructive sleep apnea (apnoea)
• Obstructive sleep apnea (apnoea)
Medical
conditions:
•
Hyperthyroidism (overproduction of thyroid hormones)
• Migraine headaches
• Head injury
• Encephalitis (brain swelling)
• Stroke
• Premenstrual period
• Bloated stomach
• Some types of medications
• Migraine headaches
• Head injury
• Encephalitis (brain swelling)
• Stroke
• Premenstrual period
• Bloated stomach
• Some types of medications
Lifestyle
issues:
•
Physical or emotional stress
• Travel anxiety such as sleeping in unfamiliar surroundings
• Alcohol use and abuse
• Noise or light
• Travel anxiety such as sleeping in unfamiliar surroundings
• Alcohol use and abuse
• Noise or light
Night
terrors are believed to be caused by a chemical reaction in the brain that
causes the sleeper to experience very frightening dreams. The terrors usually
start about ninety minutes after the sleeper has fallen asleep when they are
entering stage four of their sleep cycle. When a sleeper takes a sleep test in
a sleep lab, sleep researchers are able to see a dramatic increase in the
amount of brain activity during the night terror episode. This activity will
continue to show on their monitors while the sleeper is visually showing the
fear of the night terror episode.”
The
following is taken from the website: http://www.nightterrors.org/mot.htm where
you can read more about Night Terrors for yourself.
“Although
night terrors can occur anytime in a persons life span, the most common is
reported in children between the ages of three and five. (However more recent
studies have turned up showing that many adults as well as children as young as
six months experience night terrors on a weekly basis.) Night terrors usually
occur fifteen minutes to one hour after going to sleep. I personally experience
mine at just about the 45 minute mark. The longer the person is in NREM (the
stages before REM) before the night terror strikes, the more petrified they
will be when it occurs. Keep in mind though not everyone falls to sleep in the
same amount of time as others. This makes a sleep study about the only way of
determining what stage of sleep you are in when these events occur.
Night
terrors have been shown to appear in stage 4 of sleep. This is just one thing
that separates them from nightmares which can occur anytime in sleep. It is
possible to make a night terror occur in some people, simply by touching or
awakening them during stage 4 of sleep. Why night terrors occur is still a
mystery. The mind is supposed to be practically void during the deeper stages
of sleep. Most sufferers will awake gasping, moaning, crying but more often
screaming.
Breathing rapidly they will sit up in bed with a wide eyed terror filled stare. This panic will often last anywhere from five to twenty minutes. I find the most amazing aspect of night terrors is that it generates a heart rate of 160 to 170 beats per minute. This is much faster than the normal heart rate that can be attained under most stressful circumstances.
Breathing rapidly they will sit up in bed with a wide eyed terror filled stare. This panic will often last anywhere from five to twenty minutes. I find the most amazing aspect of night terrors is that it generates a heart rate of 160 to 170 beats per minute. This is much faster than the normal heart rate that can be attained under most stressful circumstances.
Some
things that can help bring out a night terror are stress, medications that
affect the brain, (It is hard to list exactly which ones) being over-tired or
eating a heavy meal before going to bed. Combining all of the above I can
usually guarantee an occurrence for myself. Many different medical ailments
contribute to the frequency of Night Terrors. The listed items DO NOT cause
night terrors, they just seem to put your body into the state where a night
terror can manifest itself. People without night terrors will not have a night
terror just by trying the above.
There
seems to be a common thread in how night terrors manifest themselves. Many
people who remember the night terror have talked about seeing animals or
people. Most people describe the person that they see as dark and shadowy and
feel that the person is going to hurt them. Quite a few people see snakes and
spiders. At first I thought people were seeing only things they are afraid of
during waking hours. After more research I found that only a small percentage of
people were afraid of what they see (in night terrors) during waking hours.”
Posted in
Uncategorized and tagged health, night terrors,
nightmares, Sleep
A
Birthday Ditty for Fibroduck on his 2nd birthday – Sept 1st 2011
Feathers
preened, eyes sparkling in the morning sun.
Getting
ready for a special day he knows will be fun.
Bringing
happiness to us all on this day of celebration
This
little fella needs no introduction…
Fibroduck,
you make me smile
you bring
me comfort with your lil quack
With you
at my side I can walk a mile
Sticks in
hand, despite the pain in my back
I will
fight on with Fibroduck in hand
I will
spread the word across this land
We may
look calm on the surface, you see
But we
are fighting this illness, endlessly
Feathers
preened, eyes not quite so bright
Its been
a long day, and its not even night
Our
battle goes on, always out of sight
But with
Fibroduck with us, succeed we might !!
Posted in
Fibromyalgia and tagged Fibro, fibroduck, fibromyalgia,
fight, fun, poem
The start of an incredible journey…
(Warning – to those of you with closed minds, those who cannot believe in the alternative – guardians, spirits, Reiki healing and more, this post may not be for you)My first experience of Reiki was several years ago now and was a positive experience with a feeling of intense heat from the practitioner. Sadly it was a one-off session and it took a further 15 years or more until I came across another practitioner who, I not only felt comfortable with and could treat me on a more long-term basis, but who did not want to charge me extortionate amounts of money.
So here we are 2011 and this is where I am going to start my journey…
You may have seen me write about having acupuncture in the past 6 months and alongside this treatment the woman I see also does a small amount of Reiki during our hour-long session. Well, she recently introduced me to her Reiki Master (I’ll call him “S”) and my OH has been seeing him for the last 3 months and getting incredible results from his sessions.
So last Saturday we both went to “S”s home for a special meeting. It turns out that my OH has “the gift”. This is not something he has been told in order to con him into something, he genuinely has the most incredible energy flowing through him. (For those of you familiar with Reiki, you will understand this) He has actually started treating himself and so “S” has offered to teach him to focus more and ultimately to start learning how to treat me.
So Saturday morning we arrive at his home and it is like walking in to a haven of tranquillity. Meditation music playing, sandalwood incense burning, candles lit and the most incredible feeling of calm as u cross the threshold. I sat in the back room with the very lively and cuddly spaniel “holly ” and choose some new crystals for my ever-growing collection (that’s another post) and waited for them to finish OH’s empowerment session.
When they finished and came through to me “S” asked if I would like some treatment too, which I jumped at, knowing how much benefit my OH gets. Well this is where this story may get a little too much for some of you, and I totally understand that not everyone believes in the same things but I can only tell you what I experienced in that room, so here goes…
I sat in the chair in the centre of the room and he started to talk to me about allowing whatever feelings I had during the session to come out, not to repress anything, and not to be worried by the “vibrations” (oh yes they physically vibrate when they touch you, my OH does it too).
I sat with my hands resting on my stomach, 1 on top of the other, and he began. The very moment his hands rested on my shoulders I felt the vibrations start and at almost the same time a light pressure on my hands. as the session progressed I came to feel like I couldn’t move my hands apart, but I wasn’t worried.* The heat from “S” was amazing, and I could feel it right through my shoulders, neck and upper back. Then he moved to my head for a while and that was when I felt it….tears rolling down my cheeks – I wasn’t sad, or scared, I simply had to cry. When he moved his hands back to my shoulders and then placed 1 in between my blades at the base of my neck something else happened. I started to feel ‘wrapped up’. Totally and utterly surrounded by something and that something wasn’t going anywhere. I heard a voice in my head, as clear as if I was talking on the phone, that said “trust him”, and that ‘wrapped’ feeling grew. I don’t know who or what was in the room with me but it was hugging me so tightly it was the most amazing feeling I’ve ever had. I have several family members who have passed on and for those of you who believe, I honestly feel that at least some of them were there with me. What really got to me, and this is the hardest thing to write about, was the feeling of a child at my knee. (I have lost 2 unborn babies in recent years and I have been told in the past that these souls, no matter how young can live on and return to us. Maybe I imagined it, maybe it was real, what I know is I FELT something at my knee, and at the same time I felt a pull at my stomach, not a pain, but a sensation of loss.
I have to tell you, I was not hoping for any of this, I was not expecting to feel what I felt, I did not go into that room thinking that I wanted someone to come through to me, I did not will it to happen. It just happened. Yes, I knew that “S” had an ability to communicate with spirits/energy and maybe in my subconscious there was a small hope that I might feel something, but as a pessimist, I never allow myself to believe in the best possible outcome, so I really was amazed.
Through all of this I never felt sad, despite the tears pouring down my cheeks, I felt loved. (I know it sounds corny, but it’s how I felt) I left that house feeling calmer and happier than I can remember feeling in a very long time, and whilst I felt totally drained and a little achy that night (this is quite usual) I retained that calm happy feeling throughout the weekend.
Our next session will be at his clinic, and I am both hesitant and excited about it. I’m hesitant because I am a pessimist, a worrier and can’t help the negative thoughts, the what if I don’t feel that ever again… Excited at the prospect that I will feel it again and that ongoing sessions may boost my energy, positivity and my body’s own ability to deal with my illnesses in a more natural way without the chemicals my GP prescribes me.
*Oh yes, my hands, I must mention that. For almost 30 mins of the 45 min session I never moved. It was actually only when he touched my hand to give me a tissue that I felt I could move them. Up until that point it was as if they were glued together and then glued to my stomach. Usually when I sit like that at home my arms start to ache and my hands slip apart.
A request from the heart :
It has taken courage to write this down and post it publicly, and I respectfully request that those of you with negative comments regarding the content of this blog do not write to me. This entire experience is one of positivity and I am writing it for those out there who might benefit from knowing these things can happen. I fully appreciate that we do not all believe in the same things, and that spirituality (NOT religion) is not for everyone. I am NOT asking anyone to believe what I have written here, I am simply telling you what I experienced. The rest is up to you. Thank you for taking the time to read this post.
PS: Yes my OH has had repeated experiences every time he has seen “S”, and firmly believes he knows who is with him during those sessions, but that’s his story, and not for me to tell.
Finally a GP with some brains !!
So, I went to see another GP recently (shoulda blogged about it sooner but been a bit distracted) and I think I have finally found the one I’ve been searching for. YES, can you believe it Ive finally found a GP with a brain !!I took my list of alternative medications (including other pain meds, Gabapentin and Lyrica) to him and went through the whole saga of the moron at the pain management clinic. He discussed each med I had listed and gave me the pros and cons, checked interactions with my existing meds etc. Read over the pain clinic letter and agreed with me that the doctor there did not handle himself properly and should have explained his position with regards to medication much better.
Anyway, what my lovely new doctor has come up with is as follows:
A Plan of Action:
1. Increase the amitryptaline gradually from 70-100mg over a 3-4 week period, allowing 7-10 days between each 10mg increase. Return to him between 6-8 weeks for follow up. (I go back July 15th)
2. Consider alternative meds if the amitryptaline increase has little or no effect on my pain levels.
3. Referal to the alternative pain clinic to see what if anything they can offer me.
4. Concentrate on reducing my pain so that I can do more activity to help me burn some calories (Im desperate to lose some weight). He understands my need and desire to lose weight but unlike many GPs ive seen in the past he isnt putting weight loss at the top of the agenda. He actually told me that its more important at this time to deal with the pain.
Basically, he is going to do everything he can with me, before resorting to a referral back to the rhumy (who has already discharged me) and is willing to listen to my suggestions, willing to answer my questions and willing to explain how the drugs, that can be safely used, may work for me.
He has even told me that I MUST always book a double appointment with him to make sure we have enough time to talk things through properly !
So, there we have it. I really have finally found a GP with a brain. Its taken me 18 months and Ive seen 6 other doctors at the same practice, but Ive found him.
Amitryp update:
I am now up to 90mg a week and so far im still not really noticing much difference. My sleep is, if anything, worse than it was before. I am waking up at least twice in the night and waking in the morning feeling like a zombie.
Will, of course, give it the full 7 days at this dose to see if anything improves and then increase to 100 for the final 2 weeks before going back to see doc.
~*~Gentle Hugs~*~
The Pain Management Clinic : A Right PAIN in the Proverbial !
So, I finally get to my Pain Management Clinic appointment today, that I have waited 12 months for.I wasn’t expecting miracles, but maybe a few alternative suggestions, a change in my meds, that kind of thing. So I walk in the room and the Doc introduces himself and another doctor (female) to me. She NEVER spoke the entire time.
He starts by asking me what pain I have and wear. So I tell him. I give him my 4 page print out of symptoms and pain diary I’ve been keeping and he pushes it to 1 side with barely a glance.
Then he asks me how long I’ve had these pains…..it’s in the notes but he won’t read them….so I tell him, about 10 yrs progressively getting worse, last 4-5 yrs have gotten much worse and now 2011 severe to the point of unbearable.
He sits scrawling illegible notes and never once looks at me. Then he says, and what meds are you on? So I throw my med sheet at him (thanks go to Fibroduck at this point for her very helpful hospital forms).
He writes them all in his notes, asking me if I’m sure my thyroxine dose is right. ”Yes” I say Just been checked. Then he starts on about do I take my tramadol and paracetamol every day and do I take 2×4 a day. “YES” I say. Cos that’s what it says on my Med Chart. Then he starts wittering on at me about how the meds I’m on are an ideal treatment regime for fibro. What with the duloxetine, amitryptaline and tramadol. SO I say, BUT they aren’t working. I’m still in pain I’m NOT sleeping and my depression has increased. His answer? ..NOTHING, he didn’t answer me, he didn’t even look at me.
So then he says, do you see a specialist for your depression.? “NO” says me. Cos I haven’t seen anyone about it in yrs. The duloxetine was working well until this January. So brains of britain says….wait for it….your gonna love this one….
“We can’t help you here. Your pain is too wide spread for us to offer you any treatment. We will recommend that your GP refer you to ANOTHER clinic for holistic therapy. ”We will also recommend to your GP that you see a PSYCHIATRIST”.
At this point I kinda lost it. “The pain is not in my head. I had depression at 19 yrs old and fibro dx at 34 and yet you still want to blame the depression for my pain. Don’t you think it might just be the other way around ? Isn’t it more likely that my depression is increasing because my pain is increasing?” He refused to look at me or answer me and continued scribbling in his notes.
“So this was a complete waste of everyones time then wasn’t it” I say.
“What were you expecting from us?” he asks me.
“Oh I don’t know, some advice, a med review, some alternative treatment options” Says me, grasping at straws and fighting back tears.
“There are no other treatments for fibro” he says.
So I ask him, “What about Neurontin, gabapentin and whatever other names/similar drugs they might have?” (getting flustered and forgetting all the names) His answer….he looked me square in the face and said. “They are not proven treatments for fibro”.
I’m out of the seat at this point (a very uncomfortable seat I might add considering this was a pain clinic) and heading for the door before I hit him.
“So basically what you telling me is you won’t help me, you don’t believe in trying any alternative medications, despite many thousands of people being treated with them and you are yet another specialist who is discharging me”….and I left before he could answer.
I am furious. I dragged my poor mother over here to take me to the hospital (she lives an hour away from me) only to be back out in the foyer within 20 mins of arriving, and once again discharged from a clinic who were not willing to offer me any kind of help or support.
She did her best to assure me she didn’t mind, and she was glad she came over cos she got to help me in my garden a little before we went to the hospital, but I was still ranting when we got to the coffee shop at the other end of the hospital. (Oh yes, I didn’t mention that did I. The disabled parking is at the main entrance of the hospital. The Outpatients department is a 5 min walk from there, on a good day….10 mins today) At which point she sat me down bought me a mocha and a slice of cake and waited for me to calm down. Bless her. I know she’s worried sick about me and I do my best to hide my bad days from her to ease the worry, but I wasn’t hiding anything today.
SO, here I am blogging about one of my worst days since being diagnosed with fibro and I feel even more confused now than I did before I went to the sodding clinic. At least before I went I had hope. Hope that they might offer me a chance at an alternative med or a few sessions with a pain manager or whatever they are called. But NO nothing, just another dismissal, another discharge, another rejection.
Next stop ? June 10th back at the GPs for a double appointment. I am going armed, once again, with my pain diary and symptom sheet, and this time I want the doc to READ it in front of me, and at least discuss the possibility of trying another med, a different dose of the ones I’m on, or failing all else….A Gun!!
~*~With love and gentle hugs to all my readers. ~*~
Rant Over (A Spoonie alternative to The End)
Posted in Experiences &
Treatments, Fibromyalgia and tagged Fibro, health, HELP, Hope, Pain Clinic, referral, rejection
The Fibro, The Depression and the Psychology of Life !!!
Today I read a blog from a fellow fibromite (and GP) http://bit.ly/jXRht8Fibromyalgia is a purely psychological condition. There is no physical component other than what you imagine. It is simply a case of mind over matter. If you were more positive, and could pull yourself together, this would not be happening to you.
I disagree.
However, maybe at least part of fibromyalgia can be controlled by addressing the psychological issues……
……Yet people with fibromyalgia often seem reluctant to pursue any form of psychological intervention for their illness. For example, I ran a poll asking people about fibromyalgia ebooks. I asked what sort of information people would hope to read about. One of the suggested topics was: “Counselling and Cognitive Behavioural Therapy”. In the poll, this was one of the least popular responses.
I got inspired to write a response then decided I was waffling so thought I’d write in my blog instead.
Having had CBT and counselling for many other reasons in my life (prior to the fibro dx) I guess I have to say I am VERY sceptical that it would have any benefit on me at this point in my life. CBT and counselling work as long as you keep attending the sessions -BUT eventually the counsellor says OK you’re done NEXT patient please, and you get left to carry on alone.
Well for me, that doesn’t work. I lose focus, interest, patience very quickly. Everything I’ve learnt fades away from me.
YES, thinking positive is a good thing. My acupuncturist often helps me to think positive during our sessions. We talk about the good stuff I’ve done that week and what I achieved rather than failed to do. She reminds me to try to think of 2 good things I’ve done each day b4 bed, and that night I will usually remember to do it. But only 2 days after I’ve seen her my head clouds over, the ‘empty’ feeling creeps back and all the negative thoughts take over again. WHY ? I wish they wouldn’t.
My depression / anxiety and OCD seems to affect ALL my thoughts. not just those that dig at me about whether the door is locked or the lights are off but the darker thoughts, the depressing ones. replaying images in my mind every time I close my eyes. Images of sick and injured animals, flashbacks of a recent near miss accident in the car, arguments with loved ones (that didn’t happen, but I imagine them), bad news even death. (I actually had the thought on Friday night – what the hell would happen to my OH and my mum if I died in my sleep) I mean really ? Who goes to be thinking like that ?
I DONT WANT TO THINK LIKE THIS. I want to think of happy times, happy places, happy people. Positivity comes and goes like a tide. When the water is high I feel overwhelmed with a fear of drowning. I can’t see or reach the bottom where everything I want is staring back at me from the sand.
As the waters recede I feel calmer, I breathe deeper, I reach out for those happy memories and manage to grab a hold of them. I find my smile again, and even my laughter. (they are my shells and pebbles)
Of course that wave is going to come back. How I deal with it varies. Sometimes I manage to stay afloat and hold on to my positive memories: My shells and pebbles held tightly in my hands. I wait it out until the waters ebb away and remember this as a day I achieved something good. Other times (such as recent weeks) I just can’t hold on to them, I watch them falling back down through the water to the sand. I feel the seaweed tightening its grip, tugging at my body, pulling me down. That empty feeling washes over me and I sink. I don’t want to, I can’t help it. It is easier to sink than fight to stay afloat.
Wow, I did waffle didn’t I. Where was I, oh yes…CBT and counselling and the psychological side of Fibromyalgia. Maybe a little personal counselling is called for at this juncture:
YES, of course there is an aspect of psychology to having Fibro. You can’t fail to see the connection, when your body is in constant pain, you’re bound to become depressed. BUT, what if you were already suffering from depression (for more than 15 yrs) before you were told you had Fibromyalgia. Then you start to ask yourself the age old question: Which Came First?
Have I had Fibro longer than I think I have? I know I have always been sensitive to stimuli. I have never really been what you might call ‘fit and healthy’. Did my depression (and severe lack of serotonin) lead to my Fibro, or has the fibro been there all this time, causing ALL my other problems since I was a child. I know that over the last 10 yrs my health has drastically deteriorated and the pain I experience has multiplied with every passing year. I have therefore assumed that the fibro started sometime in the last 10 yrs. But did it ?
I can recall being light sensitive as far back as I can remember. I was always the kid who said OWW and got mocked for being a wimp. I was diagnosed with Tenosynovitis in my hands at the age of just 15 and wore splints for 2 years. Was this my bodies 1st flare ? I have always been emotional and easily hurt/offended. Touchy and moody. Diagnosed with depression at just 19, I’ve never been of the meds since.
My childhood wasn’t great – I’m not going to go into details, but suffice to say I had a lousy father. What I will say is it made being a kid tricky. I was on edge a lot of the time cos of his temper. He was never physical but god his words. (shudders).
I wasn’t one of the popular kids (in fact I was the target of much amusement for the bullies) and I didn’t have too many friends either. I am an only child and learnt to entertain myself from an early age. Is this another factor in my current situation ? Did this have a psychological effect on me in adulthood. TOO BLOODY RIGHT it did.
They say the bad stuff is easier to believe. Aint that the truth. When you spend 12 yrs of you youth being picked on and told you’re fat, lazy and useless, you kinda figure well, if that’s what they see in me, then so be it. That’s what I’ll be. Now don’t get me wrong. I didn’t stop and think one day, I’m going to be fat lazy and useless, but it’s about conditioning. What we are taught, no matter who teaches it, will have an impact on our lives.
I heard the word FAT so many times its what I’ve become. IM NOT BLAMING the bullies for making me fat – so don’t go getting on your high horses at me. What I’m saying is, indirectly, subconsciously, somewhere in the back of my screwed up head, something said UR FAT….so that’s what I am. I’ve struggled with my weight for years. I was NOT FAT at school. I was taller than the other kids, and bigger built. I was the wimp, the one who cried a lot, so I was an easy target. I am not going to deny that, over the years, I’ve developed an unhealthy obsession with food. I’ve used it for comfort, in anger, and in joy. I’ve had CBT to help me break binge cycles and counselling to try to get to the root cause of my obsessions. You know what…every time….it comes back to the bullying at school. Those words ringing in my ears…Fatty fat fat. Are you sure your bike can hold you…wow look at the wheels buckle…are you pregnant….and so the story goes. I am an addict. I know this. I know what’s good for me and what isn’t. Don’t get me wrong. I DONT eat take aways and junk food. I CANT – I have an intolerance to all the additives in that sort of crap, apart from not being that fussed on the taste. But I am a chocolate addict, and I do eat too much of the right thing too. KNOW IT ALL. ITs a continuing war of wills in my head, heart and stomach. I have days, weeks even months when I can do soooo well, lose weight, feel better about myself, then BANG. Just 1 wrong word from a stranger or a family member, 1 crisis in my life – a bill I can’t pay, something breaks, even a Fibro flare….and I’m back to my old habits. IT can take me months to get the willpower back and start again. Oh I know, I can hear people screaming at me…I DO THAT TOO…there are many many of us out there.
———————————————————————————
You know that hardest part about being overweight (and I’m talking morbidly obese here, not just a few pounds off your ideal weight). Its not finding clothes to fit, or the cruel words from strangers. It’s the way you get treated by the medical profession.
On more than one occasion I have walked into a doctors office and watched the GP look me up and down in that “Oh here we go another fat person who wants to know what’s wrong with them” way. You just know their answer to your question is going to be lose weight. ….
Me:”Doctor, I’m here because of this severe pain in my shoulder, I can’t move it, I can’t sleep…..”
GP: *looks me up and down and says* ”Have you thought about losing some weight?” ”What have you been doing about losing your weight?” “Would you like me to refer you to a dietician?”
Me: “Yes I have thought about it, Yes I have tried, no I don’t want ANOTHER referral to a dietician”. Hangs head in shame and leaves GPs office feeling like a piece of dirt under her shoe.
YES this really did happen. That was literally how the conversation went. I got nothing from her about my shoulder and left the surgery in tears. (this was before my fibro dx). I had to stop my OH from going in there and kicking off. Suffice to say I changed GP practice the next day.
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Oh dear I went off on a tangent again didn’t I ?
The words just seem to be flowing today…. But I really must wrap this up now before I send any more of my readers into a boredom induced coma.
Conclusion : Dear Doctors, We are all different, what works for 1 patient is never going to work for them all. I am ME, I am an individual who deserves my own diagnosis, my own medicines and a little bit of respect from you when I walk into your office in need of help.
If I tell you I have tried something and it didn’t work, don’t assume I am LYING. If I tell you I CANT do something you suggest to me, don’t assume I am LAZY. If I am asking for your HELP, I want you to do your best for me, not palm me off with 3rd rate ideas, pointless meds and a load of medical jargon I don’t understand and will never remember !!
Treat me, the way you would expect to be treated. I mean this in the medical sense and in the way you speak to me.
Yours
A chronically sick person who just wants to live her life in the best way she can, and has finally come to terms with the fact she needs help from other people to achieve this….and is asking for YOUR help.
Posted in Depression, Fibromyalgia and tagged Depression, Family, Fibro, health, metaphors, Psychology
UNEMPLOYMENT / ESA / AND THE DISABILITY DEBATE
All these discussions about wether or not disabled people are fit for work. Why is it no one stops and realises THERE IS NO WORK !! OVER 1 MILLION PEOPLE UNEMPLOYED.More than 500k people being made redundant from civil service jobs. Disabled people being forced onto ESA and told to find a job (with or without support)…. All this and no one seems to remember the simple fact that THERE ARE NO FRIGGIN JOBS OUT THERE FOR ALL THESE PEOPLE !!!
Not to mention the fact that I dont know of any employer out there who would be willing to employ a person with a chronic illness that has so many variables that said person could not even guarantee turning up for work dressed. Or that said person suffers from fibro fog or other issues with concentration so that the employer would need to teach them the job EVERY time they came to work. Oh yes, and the contractual nap time for those of us with CFS/ME and the panic attacks and tears for those of us with severe anxiety and depression. And, if like me, you dont leave the house alone, would the employer also employ your partner or carer to be with you all day ? I think NOT !!
So, you are an employer and you interview 10 people. All of them have the right qualifications, age and sex is irrelevant. The only variable is that 3 of those people have a chronic illness, but the government says they are fit for work. Do you employ one of the sick ones, given the information above about their daily needs/ difficulties ? Would you want to have someone working for you that, no matter how much they want to be there, simply cant get dressed and leave the house today ?
*Sighs* Rant over.
Depressing Depression and a list as long as my arm
Warning: this blog is a
self indulgent. symptom listing, moaning session: But I feel the
need to do it.
Since the age of 19 I have been treated for depression. Over the years
I have worked my way through many anti-depressant medications, from Prozac to
Dothiepin, Seroxat to Duloxetine. I have my good days and my bad ones.
I have had some really bad ones, where I have quite literally ‘hit the
floor’. Getting out of bed and collapsing to the floor, crying and
rocking myself like a baby, in a zombified state. I have even, and I take
a deep breath before typing this, self-harmed. I have seen many
counsellors, had CBT, punched walls and screamed into pillows. I
have learnt to recognise the warning signs over the years, and have not had
such a bad patch since my late 20s. I still have bad days, even bad
weeks, and can sob until I make myself sick. I suffer from severe anxiety
along with the depression and worry about the smallest things. I dont go
out of the house alone (with the exception of the local store, 2 doors down,
and my GPs office because I HAVE to). I hate the fear that hits me when I think
about going out, or having to go somewhere new (even when I have company)
I hate the fear and doubt that taps at my head every night when I check
the back door is locked, the lights are all turned off and the cooker is off
and cold. Yes, I also have OCD. I cry over spilt milk and molehills
are ALWAYS mountains.Over the last 3 weeks, my depression has been very bad agsin and every little thing that has gone wrong has been a major disaster for me to deal with. My patience is non-existent, I have no interest in anything around me and I am crying at anything, everything and nothing.
In 7 days I will be 36 (another yr nearer to 40) and I look at my life and wonder what Ive done with it. No kids, never married, never owned my own home. No successful career, no university degree (I tried, but my health and money worries ultimately forced me to quite my mature student education)
Then I am reminded that despite all of the things I havent done, and all the health problems I have I am actually lucky – Yes ME, Lucky !!
I have a man who loves and cares for me (even if he isnt too good at showing it) a mum and stepdad who love me, a cat who needs me (even if she does pretend shes the boss), 2 adopted grand children and, whilst it may be a rented home, I HAVE a home. A home with a garden (the 1st one Ive had since I left home at 18) in a quiet, charming little village with friendly neighbours and enough wildlife that visits me I could open a nature reserve.
So what the hell am I depressed about ?
Then it hits me – quite literally as Im typing this – the bloody PAIN that is my Health (or lack of it). The many conditions associated with fibro and those that just sit alongside it and are amplified by the it. The OCD, the anxiety, the depression, the pain, the hypothyroidism, the bulging discs in my back, the trapped nerve in my hip, the dropped shoulder joint, the sensitivity to bright light, loud noise and cold weather. The headaches, the nausea, the TMJ symptoms. Hugs that hurt more than comfort me, Showers that warm me up but knacker me out, Sunny days that warm my joints, boost my vit D but make me wanna sleep and trigger my hayfever.blah blah blah blah blah
WTF – How the hell do I find anything to smile about through all that ? (A twitter friend asked the question, how/why do spoonies smile when they are in pain ?)
At times like this I really dont know how, but I do know why I smile – I have to smile – I need to smile. Laughter is the best medicine – Its free, you dont need a GP or a prescription.
My garden full of birds and animals makes me smile.
The silly and cute things my cat does makes me smile.
Those crazy e-mails my friends and family send me, make me smile.
My FRIENDS on twitter make me smile.
Give yourself 5 mins today and think about what makes you smile and then SMILE !!
**As an add on to these thoughts I have just been flicking through the net and came across this new theory !!:**
Gene helps explain happiness levels
Basic levels of contentment are largely determined by a “happinessgene” in the brain, research suggests.People tend to be more or less satisfied with their lives depending on what form of the gene they have.
The 5-HTT gene helps nerve cells recycle the signalling chemicalserotonin, which is known to be linked to mood and depression.
It comes in “long” and “short” versions. Individuals who inherit two copies of the “long” variant, one from each parent, tend to be more content than those with other combinations, the study showed. The least happy were people born with two versions of the “short” gene.
Behavioural economist Jan-Emmanuel De Neve, from the London School of Economics and Political Science, who led the research, said: “It has long been suspected that this gene plays a role in mental health but this is the first study to show that it is instrumental in shaping our individual happiness levels.
“The results of our study suggest a strong link between happiness and this functional variation in the 5-HTT gene. Of course, our well-being isn’t determined by this one gene – other genes and especially experience throughout the course of life will continue to explain the majority of variation in individual happiness.
“But this finding helps to explain why we each have a unique baseline level of happiness and why some people tend to be naturally happier than others, and that’s in no small part due to our individual genetic make-up.”
The research is reported in the Journal of Human Genetics.
The scientists analysed genetic data from more than 2,500 participants in a major US investigation looking at health-related behaviour in adolescents. Genetic type was compared with answers to the question: “How satisfied are you with your life as a whole?”
The results showed that possessing two “long” copies of the 5-HTT gene rather than none boosted the chances of being “very satisfied” with life by 17%. Having just one “long” copy increased the likelihood of being “very satisfied” by 8.5%.
So, maybe I have a short-short gene or maybe this is just another one of sciences crazy ideas to try to explain human nature when what they really know is NOTHING until they have experience REALITY.
Not my Best Day ever…. But I make a dam good cuppa !!
Following on from my last post about asking for help, today I had a HELP ME moment.Having had my acupuncture and reiki treatment yesterday I had a fair nights sleep last night and woke feeling almost human. With the sun shinning I decided to go hang the washing out so I could get another load in before the rain returns. At this point I should mention that I have a net basket on wheels for pushing my washing in and out the house.
So, I manage to empty the washer and hobble down the garden path, stick in one hand, wheeling the wash basket with the other. So far so good. I get to the washing line and walk the length of it giving it a wipe over before I hang my lovely CLEAN washing out to dry.
Then I go to push the washing basket a little further down the path and DISASTER. The dam basket for some unexplained reason just FELL OVER. There I am stood looking at all my clean washing stren across the garden path and I went into disaster mode. I couldnt bend down to scoop it up, I even tried lifting it with my foot to bring it nearer to my hands but to no avail.
I knew my OH was probably still in bed, or in the bathroom getting dressed, so there was no point shouting for him. So I swallowed hard, tears streaming down my face and I called out to my neighbour for help. My neighbour, a 60 something yr old lady with a heart of gold came rushing to my aid, picking up and shaking off the clothes, pegs and basket and even helped me hang the washing.
After thanking her profusely I limped back in the house with the words “useless cripple” running round and round in my head, tears streaming down my face, and promptly sat down and buried my head in my OHs chest for half an hour and sobbed.
He had no idea what I was crying about, and I couldn’t say until I stopped crying. But I was so glad it was the weekend and he was here. I spend 5 days out of every 7 on my own, and I suspect I may have spent the day dwelling on this if I had been on my own. But, having had a good cry, and long cuddle and called the basket all the names under the sun, I pulled myself together and made a cuppa for the 2 of us. (He tells me I make the bestest tea in the world, although its a very useful technique to get him out of ever making a drink for himself or me)!!
In writing about this incident I feel I can let go of it and remind myself that I am NOT a useless cripple, after all, I make the bestest tea in the world…I cant be that useless now can I ?
Asking for Help : Is it defeatist or logical ? (A lesson for me)
For those of us with chronic illnesses one of the hardest things we can do is ask for help. Why? Well, its like saying “Ok, I give up, I cant do this”!!Independence and pride go hand in hand and neither one of them wants to let go easily.
My OH is always shouting at me for being stubborn and not asking for help. He sees me struggle, sees my pain and says “Why didn’t you ask me?” My answer ? ”Why didn’t you bloody offer ?” !!!
The reason he doesn’t offer is because over the last few years I have made it blatantly clear I am an independent woman who can Do It Myself, Thank You Very Much.
The problem is, now, I cant do it myself, but im still too proud and stubborn to ask. So instead of asking before I start a job, I get half way through and throw a tantrum at him. Poor guy. Not his fault, but he just happens to be in the firing line when my pressure cap blows.
Of course, there are times when things are his fault, he can be an untidy bugger sometimes, and then he looks at me like a little 5 yr old would and does the “but but but, I was going to do that now” routine. Despite the fact that he is still sat glued to the TV. *sighs*
So is asking for help being defeatist? Is asking for help saying I cant do this? Or is asking for help simply a logical option? Is it actually a way of saying to someone else, ”I need you to help me, this time, as I can no longer do this the way I could before and an extra pair of hands would be useful” !
Can we still retain our independence and pride if we ask for help? Of course we can !! We are not sitting back and saying I WONT do it so you have to. We are simply acknowledging our limitations and saying, I want to do it and I CAN do it, but I need a new way to do it and I think you could help me with that.
When they say ‘Practice what you preach’, I really hope I can. By writing this blog I hope I can start to do everything in here I’m suggesting to you dear reader. I WANT to do this, I CAN do this…I just need a little help (and a gentle kick up the butt) and a little time to readjust my mindset. One day VERY soon I am determined to pack away my stubbornness and turn to my OH, friend or family member (without stuttering, or feeling like a child) and say “Would you help me please”.
~*~Gentle Hugs~*~
I have
just been reading some recent posts on a Facebook Group I follow that is
raising awareness of Fibro and specifically the UK awareness day in SEPT 2011
and I was amazed at how some people cant get their heads around the simple fact
that TALKING is AWARENESS. It seemed that in the last 24 hours some comments
had been made by 1 member of the group that he / she was sick of us all moaning
about our symptoms and we should go use another site for that as this group was
meant to be raising awareness of SEPT 2011 only !!
If it
hadn’t been for the talking I have done with other Fibro sufferers I wouldn’t
know half what I do now about the illness. The simple fact is that by talking
to each other we learn about what is and isn’t fibro related. How, when 1
person mentions a symptom, many of us can relate to it and when we find
something that none of us have experienced before we know we need to seek more
professional advice in the matter. For those of us with useless Rhumys and
doctors (like mine) who send you home with a leaflet and the advice to
exercise, these groups / forums are essential to help us learn more about what
we are dealing with. So what if we post something on there that isn’t directly
related to Sept 2011, by talking about our own personal journey with Fibro, we
give others an insight into it and ultimately that raises awareness EVERY DAY.
Please
people, we are suffering enough, both physically and mentally with this and
associated illnesses why add more stress to the equation.
PS – The
person who made the negative comments (and literally told some members to go to
another site to chat) is a Fibro sufferer too, so you can imagine how shocked
the rest of us were by her attitude towards us all.
Posted in
Fibromyalgia and tagged Awareness, Fibro, health |
The last
couple of weeks have seen my OH home much more than usual. Firstly he
took a week off and we went to Scotland for a few days which was
fab, but exhausting. Then we had the Easter long weekend.
This week
he only works 3 days before we have another 4 day weekend thanks to the Royal
Wedding and May Day Bank Holiday.
Dont get
me wrong. I love having him around. But I have spent so long being alone
Mon-Fri that when he is here it messes with my routines.
For me,
messing with my routine is like spilt milk being more like a nuclear bomb going
off. I suffer from severe anxiety, depression and stress. I over
react to the silliest of things so routine is essential for me to remain on an
even keel each day. I hate the pressure of ‘fitting in’ with someone
else. I like to wake, rise and potter around in a daze for an hour before
I speak. I make a coffee and stare into space for at least 30 mins before
my brain functions.
When OH
is here, its get up make breakfast, *sigh* “I’m Bored”, “are we going out
yet?”, “are we having a cuppa?”, “when’s lunch?”. blah blah blah
AAAAAAAAAAAAAGGGGGGGGGGGHHHHHHHHHHHHHH.
It sends
me into a spin and I just wanna scream BE QUIET !!!!!!. But instead, I
smile and make ANOTHER cup of tea, (apparently I make the best tea in the world
– his excuse for never making one) get dressed and try and find somewhere to go
for a couple of hours to keep him entertained.
So, you
might ask…”Does your OH know you have Fibro?” Yes he does, and sometimes
he remembers. But most of the time he forgets what I am living with on a
daily basis (he doesn’t mean to, he’s just hopeless at remembering the
important stuff !!) He will ask me how I am, but he hates it if I tell
him how I really feel, cos he can’t do anything to help me, so I lie and say im
fine. I can see it in his face when he see me in pain. It hurts him
that he can’t help me. I know that feeling myself. He has a few ‘aches and
pains’ of his own just lately (old car accident has led to rheumatism), and I
feel just as hopeless that I can’t ease his pain.
There
are, of course, the good times we spend together and those happy memories we
have made on holiday and day trips with the grandkids. Those times he
says something crazy and we laugh about it for hours. The way he defends
me against negative comments from the outside world. The good ideas he
has that help me – Like the CCTV camera in the garden so I can watch the birds
etc at the feeding station, without standing in the kitchen and the specially
made garden seat he ordered so I can sit outside in relative comfort. 
So, yes,
there are good times and bad times – Times when I get stressed cos he is home,
and times I wish he was here to help me. But would I (could I) be without
him ? NO. Do I need to have a moan about him now and again..OH YES.
Would I have holidays, harassments and happiness without him ? NO (at
least not the holidays and happiness). So I take the good with the bad,
cos the good almost always outweighs the bad.
Moan
over. ~*~Gentle Hugs to all~*~
Posted in
Fibromyalgia and tagged Fibro, health, holidays |
This
inspiring piece of writing was posted on Facebook, by a friend of mine.
She gave her permission for it to be posted on, and is happy for others
to read her comments. I will not name her here, as she is a private
person, but I am not taking credit for what you are about to read. Thank
you E.L.
These
comments were made following a news story that we read:
The
Story:
This news
story is sad, but eye-opening:
The
Response from E.L.
People
often say, non believers in the illness, that fibromyalgia is not fatal. I say
that it ridiculous. Anyone with debilitating fibromyalgia will tell you it is a
disease that can cause several deaths. Death like this poor woman,
suicide. Suicidal thoughts are a major side effect of this omnipresent
disease. Death of independence in some, perhaps most people. Death of hope.
Death of all friendships. Death of the soul. Death of clarity of mind and any
hopes of doing tasks that require a clear mind. Death of your old self. Etc.
The hundreds of people I talk to agree, and myself as a severe case of
fibromyalgia, that life and your old self dies. It is a rebirth into
dependence, being shunned and called crazy, liar, lazy.. Friends angry at you
for not remembering or not going out, not being cheerful or strong enough.
Alienation.. And death of many memories as fibrofog and medication often take
away precious memories. I have heard fibrofolk called the Walking Dead,
Zombies, without the lust for brains lol, and in all seriousness I believe
sometimes this to be true. It is well past the time for fibrofolk to get the
honour and patience they deserve. This woman could have been spared if everyone
would just take fibromyalgia seriously and not see us as social pariahs. More
research funding, less being called crazy/lazy, less doctors telling us our
lives are over or that we are just hypochondriacs. She might have found pride
in being so strong and appreciated by society for the hero she was. Every time
I hear of a fibro suicide I just think: things COULD be better. Doctors who
treat us like crap need to be reprimanded. Better pain management not focused
on making money for pharmaceutical companies! The public needs hard undeniable
information on the staggering numbers of symptoms and cases and suicides. We
shouldn’t take this being second class citizens, but since we are sick, tired,
in pain, and symptomatic we cannot stand up every minute of this fight. Please
keep hope proud fibrofolk, spread awareness when you can, educate, spread the
urgency. I am sure there will be more victims, but I am more sure there will be
a cure.. And we will have a massive celebration of dancing, bear hugs, and
bumper cars 
jogging and running and
waking up the next morning refreshed and with only the soreness we are supposed
to have after wild parties love you all.. And of
course thank you Fibroduck! My heroes!
jogging and running and
waking up the next morning refreshed and with only the soreness we are supposed
to have after wild parties love you all.. And of
course thank you Fibroduck! My heroes!
2nd post:
When you
are tired of fighting, you have to seek pleasure. Take selfish time. Cry!!
Write an angry letter. Hang in there, you can do it. You are a warrior
fighting a battle that is very long and arduous. I find it helps to use
brainwave entertainment. I use them whenever I feel like I am losing the
battle, I also meditate. It helps to feel connected to the world so post on
those loosing battles, write to me, and know you aren’t alone. Tons of
frontline soldiers that deserve medals. You are a hero to keep going. And if
things get very bad, know that death will come eventually in old age. I have
had this since childhood, worsening around the end of high school, thinking: 80
more years.. Holy cow.. Eighty years of pain and symptoms??? and I met a guru
who taught me to use death helpfully: imagine all the pain stopping. Imagine no
more symptoms. Our day will come but speeding it up will be a regret you carry
over to the other side. Pretend you only have a week or a day left of pain, and
trick your mind into it. Takes practice but Death meditation is a major
meditation in Asia, esp India and Tibet. it helps. People might think it is
morbid but whatever keeps you ALIVE!!! Also, it’d suck if you did it and then
The Cure comes. Keep hope that one day we will be normal again!! Suicide is
permanent, fibro has possibility of being cured.
Posted in
Fibromyalgia and tagged Fibro, health |
This was
RT’d on twitter by someone I follow. These are the questions we are being
asked….and the people who need educating:
“Okay.
What is the deal with fibro myalgia? A few years ago, you had never heard of
it. Now, every
already-unhappy person ALSO has that.”
I havent
included their name, but I did check the profile, and it would appear to be a
young male “gamer”. I can totally understand his question. Lets face it, most of
us diagnosed with FM in the last 20 years had never heard of it either untill
every other possible illness had been ruled out and FM was the only thing left
in the medical journal that we could possible be suffering from.
Even our
own GPs knew and still know little or (worryingly) nothing about it, so how can
we expect someone fit and healthy, young and happy to even begin to grasp the
concept of pain 24/7. Please dont let this question knock you back. Take it as
an opportunity to educate someone. We dont need to to drown them in details,
but if you can think of an analogy that the person in question can relate to
try going down that route with them. (remember the spoon theory
http://bit.ly/ibB62z )
For
example: A gamer, playing a 24hr session of gaming (I know they do this), might
understand the “aching” or cramp he would feel in his muscles after not moving
in a long time, or the repetitive strain in his hands. Ask them if they could
imagine that pain every day, never leaving them, never being able to play their
games again because it hurt them to do so. Ask them to imagine someone taking
their games away from them and telling them they can NEVER play them again
because that just isnt part of their life any more. Tell them that even those
simple platform games would be hard to play as they would struggle to
concentrate and remember where it was they went the last time they went up to
the top platform….was it down jump back, or up run fire ?
OK, I
know, there are those out there who would still laugh in your face, and lets
face it, do we care about them ? NO. They have no place in our lives. But
maybe, just maybe you come across the right one, and managed to educate someone
a little bit. If we could all do this for just 1 person, imagine the awareness
we could raise. Just remember:
The
people who matter in your life DONT MIND….the people who mind..DONT MATTER.
~*~
Gentle hugs to you all ~*~
Posted in
Fibromyalgia and tagged disability, Fibro |
