Shoes

Shoes

Shoes… shoes… shoes
Shoes are a girls best friend, you can never have enough, they can make you feel ten feet tall, on top of the world. It’s true for some, I once had a friend that would put on her heels on a Saturday night and would immediately lose a stone.

Give a girl the right shoes and she can conquer the world. 

Marylin Monroe

But these women clearly don’t have my feet!

My life has been blighted by shoes.  When I was six or seven I can remember sneaking out in my friends ballerina pumps, I couldn’t really walk in them, the fact that the memory is so vivid thirty years on proves that! For once I wasn’t walking around in my sensible Clarks, T bar sandals.  I understand that my mum was trying to look after my feet, she knew what I needed even without a diagnosis to tell her, no doubt she could tell by the way that I walked and the amount of times that I fell over fresh air but as a little girl I just wanted to be a princess.

Now I should have known things weren’t quite right when as kids we decided to catch the bus to the local ice rink to go ice skating, I would have been about eleven.  I laced up my boots and it is safe to say that I couldn’t even stand in the boots off of the ice.  Supported on both sides (putting a new meaning to the song lyrics ‘lean on me’) I made my way to the rink.  I tentatively stepped a toe onto the ice, I remember standing glued to the boards as my friends skated off one by one, by the time they had done a lap I had conceded and hung up my boots.  I like a challenge but I’m a realist.

 

Then there were the shoes that I tried to walk in, when I was a teen and rebelling against my God given feet, heels…. No sexy Louboutin’s going on here, Oh no! Chunky thick heeled, preferably lace up (to offer more support) boots and they had to be boots or I wouldn’t have taken a step in the first place.  I lost count of the amount of times I would fall walking into a club or the dance floor.  It wasn’t always the shoes to blame, sometimes it was a dislocation, sometimes I just couldn’t tell I was falling until I hit the deck so made no attempt at all to save myself.  But I remember fondly (and so will my friends) some good nights out by the magnificent falls.

 

The shoe mistakes, there have been many.  Years ago I used to long just to walk in nice shoes, I would try them on in the shop like Cinderella when really with my feet I was more a kin to one of the ugly sisters.  If I could get the shoe on my foot I would convince myself that they would be okay, only to realise when they had been sitting in a box for a year that they were another shoe mistake. As the years have gone by I am much less fussy about what they look like, I am a realistic, I reside in one brand of super wide flip flops in the summer and boots form autumn through to spring.  I grieve when a trusted pair of boots finally fall apart like I’m losing pet that has become part of the family.  As I get older my expectations have shifted somewhat, I long now to be able to wear a pair of converse pumps in the summer or flat sandals to a wedding.

There was the time my son saw a pair of stiletto heels, he would have been about two and a half and we were visiting my friend, her shoes sat neatly on the stairs after she had worn them out the night before.  At this point in life I think I had given up on trying to walk in any type of heel at all, he had never seen a pair of shoes like that, I remember the look on his face as he questioned what they were, to him they really were like a prop from a fairy tale.

I have become a master at dressing around my feet, my outfits wouldn’t necessarily be the ones that I would choose if I could put on any shoes and step out in them but I’ve learnt the art of compromise. Skirts with boots and tights.  A floor length gown to a black tie event (with no split) so no one can see what is lurking underneath and in my younger days I was an expert at drawing attention to other areas with the clothes that I wore so no one even noticed my shoes!!

Twenty years ago when I first met my husbands family they thought that no one could possibly top my sister-in-laws lovely feet but I stole her crown clean away, and no one has come close to it since. I hope that my daughter never does.  She is already beginning to understand the pain that shoes can bring as she longs to walk in a summer sandal or a normal school shoe but is resigned to high top trainers and boots even in the 30 degree heat, just to keep some sort of mobility.  She knows how to rock her Dr Martens with style and has the smile and the wit to match.

Shoes will never be my friend as I struggle to find them, they cause me pain and they dictate the clothes that I wear but I will endeavour to stress less about them as time goes on.

Give a girl the right attitude and she can conquer the world. Shoes are optional. 

Sarah Wells

I’d love to hear you comments… does your attitude give you power over your shoes or do your shoes have power over you? It’s a fine line with CMT and EDS.

The Signs of Carer Burnout and How to Fix Them

The Signs of Carer Burnout and How to Fix Them

I have three children, all affected differently with elements of Hypermobility Spectrum disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and Charcot Marie Tooth disease (CMT) and new to the ever-growing list this year is Chronic Fatigue syndrome (CFS/ME).  As well as having hEDS and CMT myself.

We would describe ourselves as a happy family, we laugh a lot, we always make the best of everything life throws at us… a first glance I look like any other parent standing in the playground to collect their children at the end of the day.  What you don’t see is that managing our lives takes effort, immense effort.

On the surface I hold it all together, I smile, make small talk with friends, make appointments, organise tutors, go for coffee, I’m a good wife, a good mum, a good friend but underneath the facade the cracks are there.

This last 12 months have seen our son decline dramatically with his health, particularly fatigue.  To the point that we have had no choice but to initiate home education for him.  It has been a bloody slog and although he has improved over the last six months when he wakes every morning I still do not know how he will be.  Will he wake? Will he function today? Will he cope with his tutor session?  When he is awake I’m constantly checking that he hasn’t fallen asleep, has taken his meds? Is moving enough? Is he overdoing things? Has he done any strengthening work?  Has he eaten?  Has he drunk enough water?

I must admit I’ve been running at a heightened state of anxiety surrounding the kids for months. My flight-or-flight response programmed constantly to on.  I second guess every decision that I make for our family? How can I best care for them? Am I getting it right, Am I asking to see the right doctors? Making the right decisions about school? Pushing them enough? Too little?

But I smile.

Quite honestly it’s like having a toddler at home again, that’s how much thought, time and effort goes into managing my son day-to-day.  It is constant and you can’t relax for a minute but it has to be like this if we are going to continue to see the baby steps he is taking in the right direction.

I have two more children.  To ferry to clubs, to take to and from school (one still part-time because we are always managing her fatigue so that she doesn’t tip over the edge into the realms of tiredness and meltdowns) plus their hospital appointments, school meetings, phone calls, cooking, cleaning.  Life.

My smile shows cracks.

This week I’m tired, it’s the end of a long-term and it’s showing in our house, my dad has just had major stomach surgery so we’ve had two weeks of extra worry and hospital visiting.  My son has a bad week, like his illness is throwing all our hard work to get him well straight back in our faces.  We’ve also had school reports, teacher meetings, swimming, dancing, Choi Kwan Do grading, birthday parties and god forbid a night in at a friend’s house.  My pain is way up.  To the point that relaxing my feet at night makes we want to sob and I prop them on pillows in an attempt to sleep.  Every time I roll over in bed I wake as something partially dislocates.  I’ve also subluxated a bone in my spine for the first time, and it bloody hurts.

The constant drip fed worry makes you feel like you are forever under attack and the long-term activation of the stress-response system and the subsequent overexposure to cortisol and other stress hormones is disrupting all my bodies processes.

The make up is not working.

A few weeks ago I had a conversation with a friend, she has a son with Type One Diabetes.  On the one hand our experiences are totally different, diabetes looks completely different on a daily basis to what we deal with.  But on the other hand we can relate to each other because caring for our kids, the fights, the worries, the sleepless nights, definitely stir the same emotions in us as humans, no matter what the illness. When her son was diagnosed she remembers being warned about burnout.  The professionals taking to her were referring to a patient with diabetes getting burnout, having to care for themselves every day, day in and day out.  To be alert, to watch for it.

Burnout.

Then it hits me, these cracks are the first signs of burnout but not because I’m the patient (although I kind of am too) but the caregiver.  Everything rests firmly on my shoulders and just lately it’s all been a bit much.  When I look closer the signs that I’m not coping have been there for quite a while,  I’ve been painting over the cracks each day as usual and pretending that they are not there.  Push through, push through.  This is my pattern, I should actually know better.

Always, the first step to change is recognising what’s wrong, step one complete.  Now I have I have to take the steps to put it right.

My husband often tells to me to stop putting myself last because if I don’t look after me who will look after everyone else.

He’s right… as always.

 

My 8 Steps To Recognising Burnout and How To Make It Better

Problem: Tiredness and fatigue

I am so tired I can barely put one foot in front of the other this last couple of weeks.  I just need everyone to do the normal household things that they are expected to do.  The fact that they are not managing to put

their plates in the dishwasher or hang their towels up after a bath makes me want to cry, I just haven’t got any extra energy left for these things.

Fix: First rest, it’s the start of the summer holidays so no timetables, no tutors, no school runs.  I don’t have to set the alarm clock each morning.  This will most likely fix itself over the summer but I will need to watch out carefully when we get back to the grind in September so that it doesn’t happen again.  I’m going to get the kids involved in little chores like putting their own washing away, clearing the table after dinner etc…

Problem: Lack of sleep or irregular sleep

I’m either shattered and I can’t get to sleep or I get off to sleep then wake in pain as I roll over in bed.  Then when the alarm goes off at 6:30 I’m exhausted and my eyes are barely open as I drag myself downstairs to make sandwiches.

Fix: Regular betimes, no tea after 8pm, to massage my legs before bed to limit the cramp that wakes me all – night – long.  Slowly strengthen, strengthen, strengthen.

Problem: Nutrition

I’m not hungry, my appetite is way down.  For lunch I’m forcing myself to eat toast and jam (which I know will not stabilise my blood sugar) but it is the only thing I can choke down.  I’m craving carbs.  I’m not drinking enough water or having enough salt.  I’m also no taking my bowel meds regularly enough and that is affecting my urinary system.

Fix:  Put in an online shopping order straight away.  Salty snacks a plenty.  I am now cooking nice home cooked meals for me as well as the kids, no take away’s when I feel rubbish just because they are easy.  Every morning I’m filling a large water bottle with a litre of water so that I can clearly see how much I am drinking and aim for two each day.  Take my meds, every day.

Problem: Exercise

For months I’ve known that I should exercise more, but I just don’t have the time, the energy or the inclination.  I haven’t been to my pilates class since my son got really sick in January.  I’ve being trying to keep up with everything at home, really trying, but the last two weeks I haven’t even managed that.  Just the thought of walking the poor dog makes me want to sob.

Fix: In September when the new term starts I am going to plan in my pilates sessions before my sons tutors, cleaning or ironing.  As of Monday the home exercise programme starts again.

Problem: Mood

This week I feel furious one minute, sad and helpless the next.  I don’t actually know whether to laugh or cry sometimes.  I’m finding myself turn up and later at the end of the school day to collect the children so that I don’t have to talk to anyone, or listen to everyone else lives and worries (they havent got a clue).  I’m snapping at the kids and I never snap at the kids.

Fix: Take a breath, take some time.  Read a book (for the first time in about a year) because it takes my mind somewhere else for a while.  Talk (to my husband) just saying how I feel even if I can’t suddenly magic everything better it always makes me feel ten times better, keeping everything to myself so that I don’t worry or burden him is not the answer.

Problem: I am the go-to caregiver. Always.

For my kids I am always the first port of call as my husband works super long hours to support us.  Caring for my son lately has been 24/7 and getting him well is even more hard work than when he was super sick, literally planning his day and thinking for him.  Finding the balance between helping him to get well and doing too much for him is tough and changes daily.  I like to be in control, to have a plan and you can’t be in control of an illness like CFS, it kills me.  I’m also the go to for my parents.  Mum stayed here while dad was in hospital to visit more easily but I found that I took on extra visiting to lighten the load from her.  My door is always open, always, to friends, family, the world and his wife really.  While the distraction is often welcomed over time I think it has added to everything.

Fix: First to say out loud that this is tough.  I may not be able to change everything but talking helps.   Most of all to stop beating myself up about everything, I can’t change everything and I’m doing my best.  To say no sometimes, you can’t do everything for everyone all of the time and doing everything for the kids is often counterproductive in the long run, they have to be their own confident, independent selves.

Problem: Pain

Pain is at an all time high, my autonomic system is way out of whack and then the migraines start coming.  This always happens.  When the migraines come I have no choice but to stop.  I think that it’s my body’s way of telling me enough already.

Fix: Simple, rest and then pace.  The summer will be laid back with lots of easy things like the movies or the theatre with the kids.  Plus more time for the simple things.

Problem: Social Life

Apart from a night in at a friend’s house I can’t remember the last time I met a friend for dinner or a movie or had a date night with my hubby.  I often go to the local Italian restaurant with the kids but that is in an attempt to get my son out of the house for an hour without exhausting him too much, and that is still a work in progress.

Fix: Babysitters are a problem, as always when you have three children and everyone has busy lives.  So this week we will take them all with us for an anniversary meal at a lovely restaurant.  Fifteen years, where did that time go?!? Date night might look a little different but dressing up and going our will do us all good and if my son can manage three courses without falling asleep it will be a huge step forward and well worth celebrating.

What are the signs that tell you you’re overdoing it? have you found any little things that help? Please share your ideas in the comments below…  they may just help 😉

The 8 Types of People You Meet In Hospital Waiting Rooms

The 8 Types of People You Meet In Hospital Waiting Rooms

I spend far to much time in hospital waiting rooms, people watching helps to pass the time, keeps me sane. Somewhere between booking in and hearing your name being called these are the types of people you might see…

#1 Worriers. There are always worriers, those that are scared of the unknown or the different future that they may face after their appointment.  The people that just don’t like the smell of hospitals but necessity has brought them to this point and it makes them sit uneasy in their chair.  The fear of tests, needles, procedures, news.

#2 Hypochondriacs.  They are different from the worriers because they have already decided that their fate is a hundred times worse than any news they may receive.  If they have a headache then it’s a tumor, a head cold is always the flu, a little wind is an appendicitis.

#3 Miseries. There is always someone that has left their manners at home.  You notice the reception staff roll their eyes.  They have seen these people a thousand times before but still hope to be spoken to with a little more civility.  They moan about the waiting time, temperature, seating… anything really, in a tone that is either short or whiny.  These people are probably worried, anxious, scared and may have good reason for their shortness… or they may just view their life as a cup half empty.  It’s sometimes hard to tell.

#4 Introverts. The person on their own nestled quietly in the corner rarely looking up from their book.  Or if they are with a partner or friend they never talk much above a whisper, as if they will invade your space with their voices.  They know what’s going on, the dramas, they are alert like a wolf of the prowl.  They often smile, make eye contact (but never with an extrovert) and choose not to openly engage.

#5 Extroverts.  You have all encountered these people, they talk loudly, joking with the nursing staff always with an air of sarcasm.  By the time they are called (and the whole waiting room is praying for that to happen), everyone knows why they are there, who they are seeing and what their take is on the whole situation.  They’ve had every procedure, test  or condition (or know someone who has). The introverts will never make eye contact with an extrovert, because that all it takes to draw you in and have you silently praying for your name to be called.

#6 Kind souls.  These people who smile, make eye contact and often strike up conversation with a person close by, just to pass the time.  They never ask to many questions or have a controversial opinion but put everyone around them at their ease.  Their sympathy is never taken as pity.  They have a good aura and will always look on the bright side of everything.

#7 Frequent flyers.  These people usually have a long term or chronic illness that brings them back time and time again and they are often seen by multiple doctors in multiple different hospitals.  They know the drill, they come equip in comfy clothes, a file of notes and questions prepared so that they gain the most from their appointment.  They know if the dept is warm or a little on the chilly side as they have sat in clinic so many times before.  They can often navigate the hospital better than the porters and have a knowledge base about their condition/s that astounds junior doctors.

#8 Partners.  The well loved partner or friend often dragged along for the ride or there to hold a hand, either out of duty or obligation.  Most would rather be somewhere else; work, walking the dog, the pub! But they love you so they chose to accompany you even though they may not like hospitals themselves or want to hear first hand what the doctors has to say.

Which type are you? Are you more than one? Have I missed a type out? Let me know in the comments.

Surviving a Crash When You Have a Chronic Illness

Surviving a Crash When You Have a Chronic Illness

When you live with chronic illness ‘crashes’ are inevitable no matter how hard you try to avoid them.

Getting the balance between doing too much or too little is like walking a tightrope.  Mostly for me a crash comes when I do too much for too long.  I’m not stupid and I have lived with this for long enough to recognise the subtle signs that my body gives me, trying to warn me to slow down, to take a breath, to re-charge.  However more often than not I ignore them.

Why do I do this?!? Is it a conscious decision? To be completely honest I’m not sure. I really should know better, burying my head in the sand and pretending that everything is OK will not make this go away. The only way to avoid a monumental crash is to listen to my body and treat it with respect. To manage, to pace and to keep all the plates spinning delicately in the air.

The reality is that this doesn’t always happen.

 

6 Signs that a crash is coming

 

Here are the top 5 ways to spot a crash is on its way and try to do something about it before it floors you. Hopefully by recognising the signs and acting on them a crash can be lessened or avoided.

  1. A really big appetite.  For a few days before a crash hits it is like my body needs extra fuel, I often crave sweet, empty carbs.
  2. Being teary.  From crying at Countryfile’s stories promoting the big Ramble for Children in Need watching the Undateables (I love a happy ending) to welling up when I have to ask my kids to do their H.W. for the 11th time.
  3. Brain fog. Why did I want to put the milk away in the oven?  I have to think extra hard when I’m doing something as I lose my train of thought really quickly.  Focusing on reading is impossible and I forget why I have walked into a room in the first place.
  4. Being cold.  I can’t regulate my body temperature at the best of times but when a crash is coming I’m cold all the time.
  5.  Breathlessness.  From walking to the kitchen to pop the kettle on to sitting and having a conversation.
  6. Poor sleep. When a crash is coming I become tired but wired.

6 Things to do to minimise a crash

  1. Rest. Simple to say but impossible to actually put into practice when you have demands placed on you from family, friends, work or study. Resting completely it is the best way to stop the crash getting worse. Rest now.
  2. Act immediately. When you know (and in my case finally admit to yourself) that a crash is coming you have to stop. The sooner the act the easier that it is to minimise the fallout. I have been at my poorliest when I have pushed and pushed through.
  3. Delegate. You are not invincible and not everything is ‘your job’. My problem is that my family don’t always do the things that I ask them to do a) to my standard, or, b) the second I ask them to do it – which just stresses me out! but I have to learn that the house will not fall down and I will become well much quicker if I let them help. And it’s never a bad idea to organise my lazy kids with some chores 😉
  4. Prepare. Think ahead – A little time spent planning things in advance can save heaps of energy later. From online shopping to planning your tasks and energy over a week. If you have something unavoidable to do plan good rest before and after.
  5. Ask for help. There is nothing wrong with asking for help, yet it is the thing I struggle the most with. Start with those people that you know best and that love you dearly. You might be surprised at how willing they are to lend a hand – I always am. From doing the school run for you or making dinner to doing the ironing. Think about what will help you the most and if people offer without you having to ask, say YES!!!
  6. Pace yourself. To get over a crash pacing is key and pulling back from non essential activities will help you to recover more quickly. I try to look ahead for a few weeks and plan my energy levels: I never have two busy days in a row, I plan plenty of time to recover from activities, I cancel non-essential activities or appointments and I only socialise with people that make my heart jump or if it’s something I’m really looking forward to.

I hope it helps you to recognise and act on the warning signs that a crash may be brewing, and to get back to normal more quickly (whatever normal is)!

Grief and Acceptance in Chronic Illness

Grief and Acceptance in Chronic Illness

Grief

Acceptance has always been a huge part of the journey for me.  For me it has been the key vehicle that has carried me from the darkest lands across hostile ground to a safe place again. This journey hasn’t been without its challenges but i felt I’d reached a place that was calm and predictable and I liked it.  Little did I know that soon after my oldest child’s health would spiral again.  In a blink, me right back to no mans land.

Without warning I was catapulted again into an existence consumed by feelings of helplessness and anxiety, the overwhelming frustration on this new journey only overshadowed by my complete lack of control over anything. Health, education, management, healing. The process I was going through was far worse than any grief I had felt with my own diagnoses. I felt helpless and numb. Where once writing was an outlet and helped me to heal I now became paralysed if I tried to put pen to paper.

Moving Forward

Slowly, very slowly I have began to find empowerment in securing the right provision for him, I have poured myself into work and I find myself less disconnected from the world around around me, smiling and saying I’m fine is not always a lie.

It is easy to underestimate the emotional impact of a child’s diagnosis and the effect that it has on a family. In my experience this has been much harder to deal with than any road that I have walked myself but I feel that I am beginning to move along in this cycle and coming to terms with what this means for my son – his new path, whatever that may be.

This year on 15th his birthday I spent hours scrolling through old photos, quite clearly you can see in his eyes the point that he became sick and it’s hard to find a picture in the last two years where he isn’t asleep. Instead of this process upsetting me this made me happy, proud of who he is, of his resilience, his humour, his acceptance. I know that I wouldn’t have been able to do this on his 13th or 14th birthday, I must be starting to heal.

Beginning to Heal

If you find yourself catapulted into this process – caring for a child who becomes sick please give yourself time, please be kind to yourself, tread gently, laugh, cry, scream and try to take the time to talk to someone. When the overwhelming helplessness makes you sick to your stomach every day you must know that your body can not live in that sate of fight or flight for ever, it will settle, slowly you will begin to move forward. You will begin to heal and feel empowered, you will learn more than you know and be closer to the people that you love more than you could ever imagine.

With acceptance, true acceptance, comes peace.  This is a process.

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