What’s to gain?

Stopping smoking exactly one year ago was not a choice, after becoming ill I was physically unable to go and get cigarettes, for approximately a month I could not walk and thankfully no one would agree to get me some!

Interestingly I do not recall having the same, all consuming, body and soul intense need for a cigarette at that time, perhaps being so ill distracted me, my whole focus was on recovery, to regain the ability to walk, talk, and function on a basic level.

I have had during the year urges which have pushed me almost to mania, times where I have literally thrown a plate in my anger, where I have screamed and shouted at anyone who dared to look at me, all due to those little cancer sticks, their power, their command over a person is unparalleled, they haunt you, they beckon you, they whisper in your ear telling you that you need them. Being a smoker is akin to being in an abusive, controlling relationship, one which you know in the long term will harm you in a perhaps fatal way, yet you are so under their control that you stay with them, through fear of leaving, through addiction to them, to being dependant on them, even when they will take all of your money, even when you have times where to satisfy your need you will go through the dustbin searching for one, turn your home upside down, seek out pennies in order to give them what they want… power.

If you are thinking about stopping smoking, I know how difficult, how immense the withdrawal symptoms are. It is one of the hardest things I have had to do, and a year on I am still dependant on the Nicorette lozenges, but I believe it is the placebo affect which keeps me hooked on those.

So I am not going to tell you to stop now, a person needs to have a true and strong desire, a reason, a reason that will not go away.  Having a reason for stopping smoking such as a wedding, becoming pregnant, holidays and more are usually not strong enough, because as soon as the reason has ended ( you have had the child, are married etc) you need to find another reason.

Instead I would like to tell you what you will gain:

Better skin

increased power to breath

You will be less stressed

You will not stink ( don’t kid yourself… you do stink, even if you cant smell it on yourself)

Your clothes will not stink

You wont need to stand outside in the rain, cold, hail or snow

There is no “hiding”

The feeling of constantly being on edge before going anywhere ( a flight, restaurant, party etc ) will disappear.

You and everyone around you ( once you stop the snarling) will be happier.

YOU WILL SAVE LOADS OF MONEY

smoking 1

There are so many more reasons. I think I have listed the main ones.

Its a true battle, but think back to when and where you were when you first became an addict, I can be pretty certain that it was not a good, healthy, happy time in your life.

An older person may have started at a time where “everyone” smoked, where the cowboy on the horse with a cigarette advert, promised that if you would smoke you to would become this sexual, strong, cowboy type of person, but for anyone who has started in the past 23/30 years this would not be the case.

Smoking is no longer “cool”. sadly hard drugs have now taken the place of the cool factor of cigarette’s, but I do believe on the whole most children and teenagers now know that smoking is not ok.

Before you stop, sit down, picture yourself as I was, so sure that you would never become ill, it will never happen to me… paint that picture in your mind, now change the picture, an ambulance, racing through the street, your almost unconscious, you can not move, you can not talk, your mouth is open but no words are formed, you need to move your leg but try as you may no movement happens.  You may be blessed and recover, but the next time ( and there will be a next time) you may not. Do you really want to live your life in a wheelchair, with lung cancer, with illness.

We are all going to die eventually ( hopefully at a good old age of 120), but why hasten your end?

Sounds brutal? its the reality.

Lots of love

Sara

UP SYNDROME

Frank Stone, a name you may not have heard, a name I had never heard of till a couple of days ago, when I received a video of him speaking at the US Congress on the matter of abortion of fetuses with Down Syndrome, where he argued it is immoral.  He said the following:

” Richard Dawkins, expressed the opinon that it is immoral to have a child with Down Synrome, he said he believed that our lives bring more suffering in to the world than happiness, I just don’t know what rock he has been under for the last 50 years.  We no longer lead the short, unhappy lives in instituations that he seems to imagine. I really am the Actor, Author and advocate that is described on my business card.  I speak to over 50 audiences a year , with a motivational message of hope, I have just returned from a promotional tour of the United Kingdom with my co-star from Touched by Grace. I have been to the white house twice ” ……

He ends with this statement ” I teach people all the time not to underestimate others, just because of how they look, God didn’t put me here to increase suffering.  He put me here to incease accepetance.  My life is worth living.”

Frank has been a public spokesman for those with Downs Syndrome for many years.

Denmark, since 2004 have offered all pregnant women a nuchal scan, this has increased the number of abortions involving children with Downs Syndrome dramatically. last year a staggering 98% of pregnant women who were shown to be carrying a baby with Downs Syndrome (DS) choose to have an abortion.

A baby is usually born with 46 chromosomes, but a DS baby will have an extra copy of chromosome 21, this results in both physical and mental issues, which can range from mild to severe, high functioning or low. It is not hereditary  and there is no known cause.

My brother, Eli, is one of those lucky ones to be born to parents who truly cherished him, even with all those many many challenges, even when the Dr’s were surprised that my parents choose to “keep” the baby they had given birth to, even when speech therapy, occupational therapy was a huge cost, even when they had to beg all the schools to accept their little boy, never once did they give up, or show any sadness, bitterness or regret.

Through my brother we have become acquainted  with many boys/girls/men and women who have special needs, currently my brother lives in an assisted living flat, there are carers on site around the clock, but each person living in the block has a flat with their own kitchen and utilities, they can choose to eat together downstairs or in their own flat.

I could choose now to write about the daily challenges my brother has ( making himself understood on the phone due to difficulty speaking clearly for example), but instead I would like to focus on the positives, because, to be honest, that’s what my brother does, he focuses on the good in his life.

So, here is a list of  positive attributes I have learnt from him, these lessons I have learnt are not through Eli preaching, lecturing or telling, they are lessons I have learnt through being his sister , and I think our entire family has learnt from him.

  1. Happiness with life: I have rarely, in all the 30+ years I have known my brother, seen Eli truly unhappy, there have been times that tragedy ( for example the death of my father) has caused him heartbreak and trauma, but, his life on the whole, has been led with true happiness, it is not unusual to see my brother walking down the street, headphones in his ears, singing loudly to whatever song is playing. He has so many obstacles, yet he lives with such genuine happiness.
  2. Friendship: The majority of the community knows my brother, he is often in the local  newspaper ( in fact he considers it a travesty the weeks he is not in) and he can not walk down the street without someone calling out to him, or giving him a hug, often, he will have a nice chat with someone, or will call out to someone, the conversation that usually follows is this:   Me: “Eli, who was that”, Eli “My best friend” Me “that’s nice, what’s his name” Eli “I don’t know”….. So, it doesn’t matter that Eli does not actually know his “best Friends” name, what matters to him is that someone out there took the time to be his friend, to smile at him, to say hallo, and that is what a friend is. Eli has a best friend who is also his flatmate, his friend’s speech is a lot more unclear then Eli’s but they have a true bond, Eli often being his friend’s translator etc.
  3.  Never to Judge: However hard we try, most of us ( excluding you of course) are somewhat judgmental, we look at how a person dresses, car they drive, job they do, house they live in, and make baseline judgements about the person.  Eli does not do this, he doesn’t care what house a person lives in, or what car they drive, what he cares about is kindness, and to him, people who are sincere, genuine and kind are the ones who matter.
  4. Listening: uhh, writing the word listening, when it comes to Eli makes me smile, I come from a large family, there are 7 of us, all married except for Eli, all with children, my mum’s house is the central meeting point for all of us, a typical family event will include, a lot of shouting to be heard, followed by a lot more shouting to be heard. Eli though, can sit, silently throughout a meal, which is something I don’t think anyone in my family will ever achieve ( sorry guys) .  He is truly a man that enjoys his food, so that  could be the reason he is so quiet ( so that my mum does not notice how much he is eating!) but I believe that the main reason is, he is just happy to “be” and to listen, when we ask him questions or try to include him in the conversation he does not seem overly concerned about answering at length, but, make no mistake, whilst we are all yelling at each other trying to get our points across, Eli is listening, taking it all in and noticing everything that is going on.  Last week, for example, someone started to talk quietly about Eli at the table, Eli was sitting on the sofa happily engrossed in something, but as soon as they started talking about him, a smug smile settled on his face… yup he is all seeing, all hearing, so watch what you say!
  5.  Have good self esteem: this one does not need much explaining, Eli has many many challenges, but he likes himself, is secure in himself and knows he is a good person, loved by many, and has what to give to this world.
  6. Showing love: When Eli was younger the hugs and kisses were abundant, as he has grown the way he shows love has become different, he will call his siblings a few times a day and the conversation will always be the same “How are you, How’s your day, Hows (name of persons children), ok, your busy I’m going, bye” sometimes we may groan when our caller ID shows Eli’s number for the 10th time in a day, but he knows we love his calls. He is always loved and always welcome,  he actually knows the code of the front door of my sisters house, and will often let himself in calling out “only me” as he does, he knows how much he is loved, and how much we love him.

Make no mistake, just because Eli has downs syndrome it does not make him any less smart than you and me, in fact, he is so on the ball, he knows if someone is happy or sad, he is funny, hysterically funny sometimes.

Our lives have been blessed by Eli.

 

Lots of love

sara

Bi Polar and Anxiety

Anxiety is on the rise, we all suffer with it at some point, whether before an job interview, or long journey, we can understand some anxieties, they are considered the “normal” ones, but what happens when anxiety follows you around like an annoying shadow, which no matter how we try to weave, and prance our way around it, it sticks to us wherever we go, whatever we are doing.

It is almost as though there is a little part of the sufferer’s brain especially made called the anxiety pouch, it is there, always there, no matter how busy we are, our minds could be filled with a million other things, yet  the anxiety will still be there.

Carolyn M. Drazinic, MD, PhD, assistant professor in psychiatry, genetics and developmental biology at the University of Connecticut Health Center in Farmington says, “It is very common to see an anxiety disorder coexisting with bipolar disorder”

Experts say that it is not always easy to separate an anxiety disorder diagnosis from a bipolar disorder diagnosis but below are some symptoms which are indicative of both disorders co-occurring.

  • Panic attacks, severe anxiety.
  • Avoiding activities that cause anxiety, while displaying mania, hypomania or depression.
  • Having difficulties sleeping because of anxiety.
  • Showing ongoing anxiety even when not in a manic or hyper manic state.
  • Taking a longer than normal time to find the correct medication dosing and combination for their bipolar.

A panic disorder is an anxiety disorder marked by repeated panic attacks.

Thankfully, my panic attacks have calmed a lot in the recent months, but my health anxieties are at an all time high.

Having long lasting stomach issues, being seen by a number of Dr’s ( who are not overly concerned) and awaiting tests have led me down a path of tremendous anxiety, my “go to” thought process that something is terribly wrong, and the Dr’s have missed it is at the forefront of my mind.

Those of us whom have anxieties will ask for constant, repeated reassurance. Those around us may believe we are being hypochondriac’s, will not understand whey we cant just ” think positive” and will wonder why we need to over dramatize everything.

Having bipolar, combined with anxiety is a daily struggle, from the minute one gets up till they fall in to a usually highly charged/ disturbing dreaming sleep, all that is on your mind is your current health anxiety.

The difference between a person who does not have bipolar and anxiety is huge.  2 people with the same symptoms ( in my case long lasting, 24/7 stomach pain ) will have completely different conversations with themselves.

Person 1:

” This pain is so annoying, it disturbs me every day, I just cant wait for the scan and other tests so I can deal with it, I am a little worried because its so often, but the Dr’s have checked me over and over, they have sent me for tests, if they were overly concerned they would have ordered urgent tests, I will just have to wait and see”

Person 2:

” OMG, I am so sure that the Dr’s have missed something, I am sure when I have the scan they are going to find this huge mass of cancer, so scared, its just not normal to have stomach pain all day every day. What about that story I read on line?? the Dr’s missed something that women had, and so many Dr’s checked her and they all missed her cancer and now she is dying. My friend had a pain in her stomach and its pancreatic cancer, maybe I have that”. I am just terrified, should I go to A&E tonight?? I need to tell people about this so that they can reassure me, ill just text hubby to tell him my stomach is hurting again, and does he think it is something serious? Shall I call an ambulance? No I cant, come-on you know its nothing serious right? No I don’t know that, I am sure they have missed something”.

Ill leave you to work out which conversation is one a person with low anxiety and which is the self conversation a person with high anxiety will have.

Anxiety together with bipolar can cause so much unhappiness and exhaustion, coupled with the obsessive thinking that most people with bipolar tend to have, its overwhelming.

So what to do with our anxiety? how to calm it? Trying to be rational and calm just does not work.  I do not know how to overcome this.

 

A WEIGHTY ISSUE

“Are you body beach ready”

“Shake yourself skinny”

“Spray away your fat”

“Lose weight, feel great”

Just a few of the millions of ad campaigns when I look at adverts for diet/ looking good/ health etc.

Recently I felt very unwell, had pins and needles and left arm pain, a man whom we know who is a paramedic came over to check me out, he took my pulse, checked my heart rate and then pronounced, ” You know why you are getting these pains?” “It’s because you are fat”, he then continued “Don’t you want to be one of those women who walk in to a room and all heads turn to check you out”.  I was embarrased, and stunned.

I do love a wee browse in the shops on my day off, and today I ventured in to a shop I had never been to, it was not a particularly upmarket shop, nor was  it exclusively advertised for smaller women, walking around the shop I realised that in the hundreds of rails, all different designers and makes, there were no clothes higher than a size 16.

Setting myself a little challenge, and having a little extra time, I decided to look at every rail, check out all the clothes, I searched high and low, sweat began to form, my heart beat fast as I desperately sought just one outfit, just one skirt, one pair of trousers, shirt, jumper, cardigan, t-shirt, underwear ..anything to prove to myself that this huge shop catered to more than a size 14/16. Eventually beaten and saddened I admitted defeat.

It is a well-known fact that the average British women is a size 16. looking around the café I am currently in I spot within seconds 2 women who are clearly larger than a size 16.  In fact if I pause, look out the window for a few minutes I am certain that I will see rather a lot of women who are not the “average” size.

Weight has annoyingly been an issue to me for many  years, many years ago, I was skinny, but desperately unhappy, now I am large, extra-large in fact, but I am in a good place, obviously one does not automatically cancel out the other, one can be very slim and be happy or miserable, one can be large ( or obese) and be in a great place, or again, unhappy.

I am aware that weight is dependant on many factors, for me a lot of my weight gain is due to the medication I take, the fact that it often makes me lethargic and to be brutally honest my eating habits were, until 3 weeks ago, terrible.

The question I ask myself is, why do we want to lose our weight, why do we torture ourselves endlessly about being overweight in a society where we all know that eating disorders are at an all time high, I see my young nieces, no more than 12/13, who are just perfect the way they are worrying about their weight, trying unsuccessfully to pinch the non existent fat on their stomachs, bemoaning their fate. these are girls who are not on social media, who do not read celebrity magazines, and do not watch tv, so where does it come from ? This endless lust for being skinny, the subconscious idea that if a person is a certain size they are somehow “better people”.

Society at large, is skin deep, we aspire to be better people, we try to lead good lives, but we live in a culture of looks. I have a friend who recently told me that following her huge weight loss, people who never spoke to her before, suddenly started to speak to her, that for a while it was an amazing feeling to be able to pick out an outfit without climbing in to the rail, puffing and panting, trying to reach the depths to see if they stocked her size, the frustration and the self loathing she felt when being out of breath after walking up a flight of stairs, the avoidance of being fully naked, the sadness when looking in the mirror, but eventually she realised that whilst her self-esteem had of course increased being slim in today’s world was rarely about health, but more about looks.

Whilst waiting weekly for my daughter to finish her dance class, another class finishes, a zumba class for adults, regularly I overhear ladies discussing their weight as they emerge breathless and sweating from the class, the ladies are on average a size 10, standing there, wearing my size …. I feel obese, ugly, and ashamed, but then, when my mind is clear, I understand that my weight may not be healthy, but nor is their body image, they do not love themselves even though they are skinny ( not slim, skinny).

Teenagers starving themselves, going in to the school toilets at lunch breaks to throw up that piece of lettuce they have just eaten, constantly exercising, is this about health or is it due to living in a society where “fat girls” are not popular, scorned and teased and made to feel a lesser person for not being the perfect weight?

Recently I started slimming world, I am also on a WatsApp group for slimming world, it is truly inspirational, slimming world makes sense, I can eat meat, pasta, potatoes etc.  I have changed my eating habits drastically. Below, just because I am in the mood of completely embarrassing myself is a typical days eating before,

Breakfast: 

(Large) Chocolate Bar, Latte.

Snack

(Large) packet of crisps, diet coke, more coffee.

Lunch: 

On my days off work, a take out, or large bowl of pasta etc. Diet Coke

Afternoon snack:

Chocolate, crisps etc.

Supper:

Pasta with tuna and mayo, toast with chocolate spread, meat, chips ( you get the idea)

Evening snacks:

Chocolate, toast, crisps ……

Listing my before diet I am horrified at the life style I was leading, I do not know what tipped me over the edge and convinced me to seriously starting to lose weight, I think whilst I was a smoker, the nicotine and chemicals that filled my body brought my whole mood down, made me sluggish and tired, I have felt better since stopping smoking and know that if I can conquer the poison of cigarettes I know I can be a healthy weight.

Sadly, the comment that paramedic made, telling me that I am having aches and pains due to being “fat” was the one that encouraged me to start loosing.

My 9 year old is a dancer, her entire being is made up of dance enzymes, she will dance any time she can, loves her dance classes, and often begs us to send her to more classes, on the other hand, she is her mother`s daughter and enjoys her food (a lot!).  some weeks ago, I made a comment, as I said it, as my mouth opened and the words formed I knew that I should not be saying it, as the words came out my mouth I willed them back. “You know you’re getting a bit of a belly, you need to be careful what you eat”….. WORST WORDS…..EVER!!!!!  That evening, whilst she was meant to be getting on her pyjamas, she appeared in to my room in full dance wear, she switched on the music and began dancing as if her life depended on it, when I asked her what in heavens she was doing she replied ” you said I am getting a belly, I need to lose weight, so need to exercise”. the experience taught me so much, Our children are growing up in a skinny is super” world, school mates can be cruel, looks are everything, if I can do anything to ensure my daughter,  grows feeling that it does not matter if she has a belly, that as long as she is healthy that is all that matters, as long as she is happy within herself, loves and respects her body I will feel I have done the best I can.

Do I want to lose weight so that “all eyes will be on me when I walk in to a room”. you know what, maybe for a little while that would be wonderful, to feel when I walk in the room that I am not the biggest lady in there, to feel confident in my skin, to be able to look at myself in a mirror and not feel disgust is a goal, but my main goal?

My main purpose in loosing weight is self-love, and love of my family, it is not that the people around me will admire me, treat me as if my looks are me, but it is for my happiness, my health and most important, so that I can dance with my daughter, always, and without being out of breath.

Love yourself, your body does not define you, be healthy for your sake, not for those around you.

Lots of love.

Sara

 

 

Mental Health Awareness Day.

Today is Mental Health Awareness Day.

From a personal view every day is mental health awareness day, and not only for me, but for the millions of people who live with a mental health condition.

It is an admirable endeavor, creating a day focused on Mental Health Awareness, but I find the similarities to other times where awareness is heightened and then forgotten about are clear, take Christmas for example where homelessness is the big “thing”, organizations like Shelter campaign tirelessly for the homeless, adverts tell us that £20 can pay for a meal, clothes and a shower for those on the streets, and then, Christmas comes and goes and those campaigns are forgotten about until the next year.

The same goes with Mental Health awareness, in one day we will all experience mental health in some form, whether it is healthy, positive mental health or unhealthy, developing in to illness, or need for some form of psychiatric help.

To a large extent unless a family member/community member/dr or friend takes action when someone’s mental health is suffering a person can go through incredible pain emotionally and physically, the age old stigma we have all heard, when discussing mental health sadly still applies, “why is mental health treated any differently to physical health” we all know that saying, we have probably used it in some form ourselves, yet the stigma is still strong, in fact I have been told not to write about mental health, to keep it quiet, as it is a shameful secret, and I wonder, and ask myself why, why after all these years, with all the information, mental health organizations, and awareness days is it still a shameful secret?

There are positive aspects though, and one of those is the organization I work for JAMI. JAMI is an organization focused on Mental Health Recovery, it focuses on the positive, the recovery rather than the negative. We have social workers, Occupational therapists, benefit advisors, support groups and so much more. I am honored to work for an organization where I see on daily basis clients arriving, feeling welcomed, knowing that no one will judge them, no one will view them as “different”, where people are treated with the respect all humans are entitled to.
It is an honor to work for an organization such as JAMI, and I have learned so much through my position here, I have learned that deep down we are all the same, we all crave care and love and respect for who we are.
Each person who comes through the door at JAMI know they are wanted and welcomed, no matter what stage of mental health they are at.
Mental Health awareness day is of course a necessity but until we all are able to stand up, be counted and accept our own and others mental health, there is still a long way to go.

FND

This is a hard one to write.

I have a problem with my breathing, having had scan after scan and test after test today I realised that it is more than likely a symptom of my FND.

This time last year I had never heard of FND, but now after my experience of loosing the use of my arm leg and speech for approx 10 days I have read quite a bit about it.

FND ( Functional Neurological Disorder) is still an unknown condition, sadly many GP’s do not have the knowledge or training to fully appreciate the disorder.

If I go to the Dr say with constant headaches, the Dr eventually sends me for an MRI, the MRI comes back normal, the Dr then concludes it is migraine. Does the Dr tell you that because all the tests were normal you are imagining it? The symptoms are in your head? One would hope not, but tragically many patients who have FND are still told that .

09F71DB0-E916-4538-8C53-F7AF03404FC5.jpegFND is slowly being more recognized, historically thought to be bought on by past trauma or recent trauma the symptoms are vast, worse case scenario, a sufferer looses the use of his arms legs or speech, tremors occur, tics, short temper , sleep disturbances, abnormal breathing, loss of muscle coordination, attacks of abnormal movement, loss of vision … the list goes on.

There are some illness’s that it’s accepted, probably even expected a patient will suffer from depression, for example a patient with multiple sclerosis may fear the future the uncertainty of not knowing how the illness will affect them as time goes by, but with FND there is a reluctance to talk about the depression or anxiety it can bring, along with the very real symptoms.

A person may be worried people will think it’s imagined, that they choose to be experiencing these symptoms that if they would just get over it they would be fine. The stigma of FND is akin to the stigma of mental health issues.

0D83F27C-F24E-4198-BABC-22DCFF3AF0E4.jpegFND is real. It is a neurological disorder that no one chooses to have .

It is not “in our heads”

It is not “ in our ability to get over it”

It affects people’s lives daily.

 

Knowing I have FND, has given me to some extent comfort, when my face twitches due to my breathing issues I know this is not “my fault”, putting a label on something can sometimes be a positive.

FND research and dr’s in general being given more specialized training is progressing, but there is a long way to go.

I am afraid of FND as it is so unknown, Every time I feel weakness in my arms and legs I ask myself is this FND and am I going to end up back in hospital unable to speak or move.

 

I would love your thoughts if you suffer from FND.

Lots of love

sara

Therapy anxiety .. Just another anxiety ?

Therapy anxiety is not something I have thought about in any great detail in the past, we’ll that is until I realised I had it! Actually  I think I will have a quick google now and see if the concept exists .. ( BRB )

I’m back. My search resulted in millions of hits for therapy assisting with anxiety but I could not find one site with therapy anxiety as the subject.

Anxiety in general is debilitating, it can cause a person to become a hermit in so many ways, when I was a child there seemed to be a lot less to be anxious about, or maybe I was just clueless. Drugs, terrorisim, etc are massive stress factors.

So, Therapy anxiety, what is it . A therapist often has more in-depth knowledge of a client then their family, friends, colleagues may have . No one goes to a therapist to discuss the weather or what they eat for lunch that day. Therapy is heavy stuff, it takes courage, it takes exposing your most vulnerable insecurities, your soul is laid bare in front of another person.

The relationship is pretty much one sided, of course I know that a good therapist cares about her clients and truly wishes to assist with recovery of mental wellness in any way they can. But being so one sided brings up so many emotions.

Example, today I took my child to see my therapist, my therapist works with children and my child needed help. Before we left home I made sure my child’s : hair was brushed and neat. Clothes were clean . Teeth brushed. Hands washed and on and on ! Because I care so much how  my  therapist, knowing the insecurities I have about motherhood would view me as a mother .

Before I see my therapist I make sure I look ok . I often leave her hoping that she likes me, wonder what she thinks about me.

When we have a session where nothing major comes up, and it’s just day to day worries that are discussed, I worry that she feels I’m not worth her time or care as much as other clients , I worry that she thinks I am wasting her time, and I worry that she would not want to see me anymore. I worry that she thinks I am fat , I worry if my nails are not done and on and on.

I hear you ask, is this what therapy should be? How can it be helpful if you are this anxious about it, and isn’t it just adding to the so many anxieties you already have ?

The answer, I believe that a lot of people who are in long term therapy have these worries, but you, if you do have therapy anxiety know that the positives, the work towards building you as a confident, emotionally healthy person, the care shown by any good therapist outweighs the anxiety to a huge extent.

So, if your experiencing my new term ( which I will make sure is added to the Oxford dictionary!) Therapy anxiety know that you are not alone !

Lots of love

Sara

“Keep him at home” she said ….

Usually I write about what I know, basing my writings on knowledge gained through life experiences, but today, and forgive me if I come across as ignorant I feel the need to write about something I do not know very much about, and that is autism.
I have a daughter who is somewhat on the spectrum, but as you will know if you have read (and thank you if you have!) any of my previous blogs, the relationship I have with my daughter is so complex, and therefore I am not fully aware of the intricacies of her needs, but I do have a very good friend who has a child with autism.
Today I spoke with her, she told me about how the long holidays have been an eye opener for her, how as her son grows and  his needs become more complex  people  she meets react to her, she sadly related over an experience she had today whilst in a park with her son, whilst he was playing in the sand a lady rebuked her for her sons behaviour and informed her “children like that should be kept at home”.
 In my mind, it is irrelevant whether her son was sitting quietly, or throwing around sand, or acting out, what is relevant however is how people reacted to this little boy, a young child whose appearance shows no sign of having an extra need, or as we often say a “special need” he is a tall, well built boy, with beautiful eyes, and a beautiful soul, yet when he goes out there are certain things he needs, again I am not an expert and am not fully aware of his needs, but for example if things do not go in the way he expects he will react, in a more extreme way than some children will.
Till a little while ago he could not go on a bus, he would fuss loudly and my friend became used to the stares, and the disapproving shakes of the head, she became used to having to push him in a specialist buggy, she became used to people judging, and making comments to her, but however used to something we are, the reality is, it hurts, it hurts so much when you give and give and give, and then one unkind, insensitive comment takes all the hard work that you are so proud of and grinds it in the mud.
He has come so far, when I saw my friend with her son today, he proudly told me ” I went on the tube without my buggy” he was so proud, he felt a million dollars at his achievement, and we shared a high 5 in happiness. He managed to walk a distance and made it to the park feeling great, yet whilst playing in the sand he noticed, and my dear friend noticed, and was aghast at an adult, pointing her finger, laughing and showing her children the little boy who was not acting in a way she considered “normal”, and all the pride and joy both he and her felt was cast aside and the crushing sadness replaced the joy.
Autism is in general an “invisible” disability, upon seeing my friends son he looks like any other child, but he is not, he is different, yet that difference makes him sweet, kind, caring and so loving, I know that I will always get a hug from him ! , sure it also makes him act out when he experiences something unexpected, or becomes upset, but which child does not?
Yes his reactions may be extreme, but to him routine is so important and so is knowing that he is loved.
I have seen my friend give her all to him, I have seen the love, care and pure, unadulterated devotion in every way possible she gives to him, from never giving up on him being accepted in to a school that was perfect for him, even though it seemed financially impossible, to patiently replacing household items that have been damaged when he is upset. I have seen my friend gently tending to him when he has lashed out, and never has she stopped, she carries him in her arms and heart.
We often complain about the behaviour of our children, but if others criticize their behaviour we will do anything to defend them, imagine the hurt if our child could not regulate their emotions, and lashed out in frustration, if we knew that our child was trying as hard as they possibly could to live the life they were given but struggling from the moment they woke to the moment they slept, imagine others shaking their heads, telling us to keep him at home, that he should not be let out in public.
She tells me, that people are so good, how they came to her defence in the park, how they told her “your doing a great job” and she appreciates those people, those are the people who give her the push to carry on the amazing way she is looking after her son.
I guess my message would be, we don’t know, we cant know, because someone does not look like they have a disability, because the person may not be in  a wheelchair, or have a special need such as downs syndrome, which is easily identified it does not mean we have the right to look, to shake our heads at a child’s behaviour, we can not judge we should not judge.
I have utter respect for my friend and so, this is dedicated to her, and to the millions of other parents who tirelessly work to give their children with an “invisible” special need the best life they can have.
Lots of love
Sara

A Sudden full stop.

So there I was, sitting at my desk, comparing weekend notes with my college, usual chit chat, usual tutting about the filth on the floor, usual conversation about ” oh my isn’t it hot” and ” how long will it last, oh really another week at least, goodness me, and we are stuck here in the office ” kind of conversations when, everything came to a sudden and abrupt full stop.

My arm, which had till then been doing its thing, sitting quietly on my left side awaiting instruction started to ache, and when I say ache I mean, an incredible, all consuming, heavy pain, I began to feel overwhelmingly exhausted, dizzy and sick. Within 10 minutes I was on an ambulance, the lovely paramedic informing me, in a way that only someone who has delivered life changing news ( not happy news!) can that I was having a stroke.

I will never forget that ride to the hospital, the ambulance going so fast I thought I was going to fly out of it, the blue call he sent through to the hospital, meaning that when we arrived there was a team of Dr’s and nurses ready to greet me,  the pure terror I fel is hard to describe.

I have been lucky, this was caught so fast, on Monday I could not move my arm, could hardly speak, and could not move my leg at all, and now miraculously only 3 days on, my arm, although I have some weakness is pretty much doing its thing again, my leg on the other hand not so much, I have managed to do a kind of shuffle, shlep the leg dance, and get to the door of the ward and back, but it feels as though I have just climbed Everest and ran back down again, without stopping for breath, my speech is also getting there, I now sound like I have had only 10 or so teeth taken out instead of a mouthful, when i try to talk for to long it gets worse and every syllable is an effort, and it is my speech that is scaring me the most, as, if you know me personally, you will know I like to talk!! Speaking leaves me exhausted, and frustrated.

Lying in the ward I have had a lot of thinking time, when I picked up my Siddur ( prayer book)  this morning and I said the blessing “Blessed are you … who firms mans footsteps” I realised in all my 41 years I had never stopped to consider what that actually means!! Go ahead and try something now, lift up your leg.. done? how long did that take you? did you have to concentrate on sending messages to your leg, or did it just happen, now imagine I say lift up your leg, and as you go to do it nothing happens, not a twitch, your leg just stays as it is, you are now starting to strain, shouting at your leg to move… but nope, nothing, nada, zilch, it lies there, mockng you, refusing to move. For the first time in my life I appreciate my leg. I appreciate how incredable our bodies are.

When I open my mouth to talk and even though the words are tumbling through my brain, it is an extreme effort to say the word, I am appreciating the ability God has given us to form words and say them, we would live in a very angry world if it took everyone the amount of time it takes me to say a word.

Speech, what an incredible gift, what an amazing way of letting others know our needs and wants. Interestingly enough my husbands name is one of the hardest things I am finding  to pronounce.

I have learnt so much in the past few days.

1. It can happen! we smoke, over-eat, never excercise and say “na it wont happen to me” but it can and it will, and yup I am going to preach, take care of your body, it is so precious.

2, Every word that comes out of your mouth is a gift, use that gift wisely.

3. Think about where your feet are taking you, we are on earth to please God with our actions, but also God wants us to have a pleasurable life, use your legs to take you places and to do things that both you and God will find pleasure with.

4. In the last few months my extended family have seen over and over the kindness of community, I am experiencing that now, with messages, words of support, calls and texts and offers to help coming in to all my family and friends from everywhere, and I  am so touched and blessed to be a part of a wonderful community.

5. Questions, basically all I have to say is “shhhhhh” if you are not asking the question out of pure, unadulterated care, not just because you want to tell your neighbour or local friendly baker just how much you know don’t ask!!

6. Hospital beds …. SUCK!!

Night night, God bless, stay healthy.

Sara

 

 

 

 

 

 

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