Tuesday, 27 May 2014

Ten Things

I am shocked to acknowledge I have reached the ripe middle age of 45 ~ and that's okay BUT there is so much left that I want to do.  So I have decided to write a list of ten things I wish to achieve before I reach the age of 55.

~:Ten Things: ~

 1.   To write and publish a book.
Even if no~one buys it, it will be an achievement. I want it to be something that reaches people, has an impact and makes them think. Ten years to complete this task, I feel is realistic.

 2.   To take the family to visit Pompeii.
I can still vividly remember visiting with my own family when I was only ten years old.  A magical day which I will treasure and want very much for my girls to have similar memories of their visit.  This is only going to be possible if we can tame their ME and work out a schedule to allow them to pace and rest during this trip ~ again we are hopeful that we will be successful in achieving this within the next ten years.

 3.   To qualify & practice as a Reflexologist, specifically to offer it to provide pain relief.
I have taken the first step towards achieving this goal, I have registered on a course starting in September of this year at East Midlands College of Health and Beauty.  I just have to complete the course, pass and then set myself up as a mobile practitioner.  I hope to focus to help children and adults who are suffering chronic pain and try to help relieve this for them.  After working in the Macmillan unit several years ago I was super impressed by how effective it was providing pain relief for cancer patients.

4.   To learn sign language.
This is something I have always been keen to learn, I don't know any deaf people but even so I think it is a valuable skill and would just like to learn it for myself, you never know ~ I may find a way to utilise it.

5.   To design and have a tattoo to depict my love for my family.
I have one tattoo which I had done 4 years ago in memory of my mum and the 5 babies I miscarried.  It is on the inside of my right wrist, it brings me great comfort to look at it and remember them.  I would like to design a unique tattoo which depicts my love for my family and have it inked on to my left wrist.

6.   To visit New Orleans and other southern states of America
I visited America with Dave 6 years ago, we based ourselves in Nashville and spent a week enjoying evenings in the bars listening to the live music there which was awesome. We also managed to shoe horn in a visit to the Jack Daniels distillery in Lynchburg, Tennessee, a stay in Heartbreak Hotel in Memphis and a VIP tour round Graceland and the associated museums and his aircraft.  I have always said I would love to go back and tour the southern states, to visit the home of the blues and sample true southern food.  My dream trip would be to travel through Louisiana, Mississippi, Tennessee, Arkansas, Texas, New Mexico, Colorado, Utah, Arizona, Nevada and finish up in California.  This one is perhaps something I will have to place as a possible joint 50-plus Birthday trip with Dave. 

7.   To become more assertive, confident and happy in my body.

Since having children I have had an ongoing battle with my weight and confidence.  I am determined to overcome my demons, lack of confidence and worries about how I look to others.  Life is far too short to allow my insecurities to diminish my pleasure in life.  SO, I am doing what I can to be fit and healthy and not worry about weight and size.  To learn to be assertive and confident in decisions I make and not afraid to step forward and try new things.  The first steps towards this goal have been taken, I just need to continue on this path and keep up with the positive affirmations.

8.   Do some volunteer work.
I want to be able to give something back to the wonderful people who have helped and supported us over the past few years.  Exactly what and when I do I have no idea, although I am sure an opportunity will present itself at the right time and place and when it does I will jump on it.

9.   To sit on a beach and watch a sunrise and sunset to the sound of the waves.
I love to sit on a beach no matter what the season or weather and watch the waves come in.  The sounds of the sea and smell of the coastal air has a soothing effect on me.  My hope is to experience a sunrise and sunset whilst sitting on a beautiful beach somewhere, anywhere.  Obviously this may need several trips to the coast for me to achieve my ambition without nodding off!

10.   Conquer my fear of spiders.
I have a HUGE fear of spiders, they are evil 8 legged critters that have the sole purpose of terrorising me.  My husband used to be in pest control and laughed at my fear, telling me they are more frightened of me than I am of them and that if I ignore them they'll leave me alone.  He soon changed his mind when he saw them chase me ~ yes you read it correctly, they CHASE me ~ even climbing up the sofa to get to me or diagonally across the floor.  For my own sanity I really do need to get a grip and overcome this fear, but the very thought of even trying makes me physically sick ~ so this will be a real challenge.

So that's it, that's my ten.  Let's just see what the next decade brings and whether or not I manage to cross any of these off my list.

Peek before you flush

Today I had to visit the GP to talk about stomach pains and digestive issues such as Chronic Constipation and Irritable Bowel Syndrome which got me thinking about poo. My maternal Grandmother had bowel cancer resulting in a large section of her bowel being removed and a colostomy being formed (who we named Rudolph).  

Ever since then I have been meticulous about checking my waste matter.  I have also suffered for years from intermittent diarrhoea and constipation, taken on and off laxatives before discovering Aloe Vera Gel drinks.  They taste pretty rank initially but surprisingly your taste buds soon adjust and it becomes almost, but not quite, a nice taste.  Since taking it myself and feeling the benefit of a more normal evacuation cycle I now have my youngest two daughters on it (as both have irritable bowel) and found it has helped them too.  From this discovery I joined the FLP company as an independent distributor which has perks in allowing me to buy all the products we use at cost price. However, we do still have bouts during periods of illness when it all goes off kilter again - but by monitoring it we can usually pre-empt any major blockages or problems.

You can tell so much about your health just by checking out your faecal matter.

 Okay, so here are some poo facts: -
  • Your poo should be a healthy shade of brown.  If it is a shade of green this could mean that you gastro~intestinal (G.I.) tract issue and should get it checked out at your GP.
  • Again, back to colour ~ varying shades of brown are normal, but if it has a greyish~whitish hue this could indicate bile duct blockage or liver disease.  Black stools could indicate internal bleeding somewhere in the G.I. tract, so again, if you have any of these pop across to your GP to get checked out.
  • If you have any blood around your anus or red poo don't panic ~ if you have some small bleeding first take a look and see if you have any haemorrhoids (either internal or external) as straining or a constipated stool could cause these to bleed a little and it's harmless, don't worry ~ but once again, pop to your GP just to be safe as could be an indication of possible G.I. bleed, diverticulitis or colon cancer.  If it is haemorrhoids it does no harm to get them checked and have advice on how to care for them and whether an operation to remove them is applicable.  NOTE: don't panic if you have eaten beetroot and then see a red purplish poo ~ that's just colouring from the beetroot coming out in your poop!
  • Ghost poo ~ when you feel the urge to go, sit on the toilet, pushing and straining all to no avail.  This is a good indication that you are constipated.  Try eating more fibre in your diet and drink more water.
  • Is it a floater? Don't worry, it is just an indicator that perhaps you ought to tweak your diet to make it a little healthier as it tends to be a sign of a poor diet.
  • But if your poo is a floater AND smelly (as in foul) and greasy this could indicate that there is fat in your poo and again a G.I. tract issue, usually the liver or colon and that your body is having trouble digesting fats.
  • The average person deposits approximately 450g or roughly a pound of poo per day.  So it doesn't really matter how many times you go so long as it is routine for you, so once or three times a day or three times per week, if it's your norm then that's okay.
  • How should it look?  A healthy normal poo should be smooth, easy to pass without straining, and formed into a nice sausage shape.  If you have a loose or watery poo you could have a bacterial infection or allergy.  Hard poo could indicate lack of fluid and fibre in the diet.
  • Watch out for overly thin snake like poos as this could indicate that you have a contracted sphincter due to excessive straining, or a more serious colon blockage.
  • Remember: there is NO PERFECT POO, everyone's poop is different, the shape, size and time of deposit of your poo depends on your diet, whether you have any infections or allergies, and stress.   All these above points are considerations should you have an abnormal poop for you.

Some fun facts about your poop!
  1. 75% of your bowel movement is made up of water.
  2. The remaining 25% is made up from fibre, both dead and live bacteria, other cells and mucous - there is also a gel like substance in it which is formed from soluble fibres from foods such as bean and nuts which form this gel when broken down during digestion.
  3. The reason why carrots, sweetcorn and similar foods appear almost intact in your poop is because they are harder for your body to digest.
  4. Beetroot colours poo red/purple, lots of leafy veggies can cause green poo & some medications white or clay coloured and black from iron supplements BUT the changes in colour could also be due to more serious matters, so if in doubt get your GP to check it out.
  5. The "perfect" if there could be one, poo would be log like and a continuous S shape.  The trick to getting this "perfect poo" is to eat plenty of fibre which bulks out the poo and acts like a glue to keep it together.  Be worried if it is thin and pencil like though as could be an indication of rectal cancer.
  6. Poo doesn't smell sweet, no matter how healthy BUT a particularly pungent one could mean infection is present, so again, get it checked out.
  7. Digestion takes anything from 24 to 72 hours.
  8. Diarrhoea is the result of the poo passing too quickly through the large intestine (which is where most of the water is absorbed when passed through at the normal rate). Constipation occurs when it takes too long to pass through the large intestine and therefore too much water is absorbed making the stool hard and dry.
  9. Your poo should sink.  Floating poo should be investigated as could be indication of fatty stools and disease/allergies/intolerances.
  10. Parping/farting/bottom coughs/flatulence ~ whatever you call it is NORMAL and healthy.  It is caused by the bacteria breaking down the food in your large intestine and the gas is a by~product of this process.  Some of this gas is absorbed by the body into the bloodstream and passed into the lungs which is then exaled, the rest is passed as flatulence. It is normal to pass wind between 10 to 18 times a day.
  11. You can have a faecal transplant IT'S TRUE and THEY WORK!  Scientists have found that faecal transplants (where stools from a healthy person are placed into the colon of an infected one) help cure bouts of chronic diarrhoea for people suffering from illnesses such as C~Difficile bacteria infection.  They have also helped people with Irritable Bowel Syndrome too.
  12. Reading on the toilet isn't a good idea, the longer you sit on there the longer you are putting pressure on your anal area and reducing blood flow which can cause haemorrhoids. 
If you struggle to get enough fibre in your diet a great tip (one we use) is to buy a bag of bran and sprinkle it on your cereal, in your smoothie, over your veggies ~ because it's so fine you can't taste it and it's a great way to top up your fibre.  We also have sports bottles which we fill and keep topped up to make it easier to keep our fluid intake up.

So next time you take a visit to the toilet, take a look before you flush!

Monday, 26 May 2014

Bright side

Today is Bank Holiday Monday and in true British style it's raining, the heating is broken and I'm a wee bit chilly.


Am I wallowing in a grump for the downturn in the weather, NO ~ am I heck as like! It takes more than rain to dampen my spirits!  I am wearing a soft comfy gigantic woolly hoody to keep warm (scarf and slanket also available for snuggling into later whilst watching a film), big soft zebra patterned fleecy pj bottoms, ski socks and long t-shirt too (I didn't say it was attractive!).  My husband has returned from his wanderings after being away with friends watching drag racing and having a few drinks and an overnight stay in his van ~ rather him than me.  Meantime, I had a lovely evening with my girls watching chick flicks and cuddling the Hairy Trio.  I have been up and at 'em this morning to face the supermarket and picked up some bargains in the wine aisle PLUS there is treacle tart left over in the fridge and some home made doorsteps of shortbread from my baking attempts two days ago.

Here is a little something to share with you that doesn't fail to raise a laugh with us (ENORMOUS Monty Python, particularly Life of Brian fans) ...
I shall leave you with a photo of my delicious (yep, I know, too modest me) treacle tart and let you drool :)  I am having it (just because I know you are all wondering and on tenterhooks waiting for my response) with "Ambrosia Dream - tastes like custard, pours like cream" ~ also doesn't taste half bad either.
A little bit of what you fancy does you good, what's your Bank Holiday treat going to be?

Friday, 23 May 2014


Today I had a wobble, I was talking to my husband, being irritable and picking up on everything he said or did.  He knew something was up with me, he understands when I get this way and just took me in his arms and held me whilst the tears came.  It helped ~ he is going through it too, it just manifests itself differently for him.  We work together, support each other but most importantly, we understand each other and the whys for it all.  Of course it doesn't change how I feel inside, it doesn't take away the darkness that weighs me down and occasionally breaks through.  I know that I have issues and that one day I will have to unlock and face them, but for now I see my therapist, to just discuss the peripheral issues that I have to deal with day to day.  She provides me with a safe haven to talk, vent and discuss my emotions, she is there for me for as long as I need her to be and that helps too.

Our situation is one that is difficult to fix ~ I have grief issues that are unresolved, which I know will need facing in time.  I have been offered group therapy sessions as a place to do this when I feel ready.  I also have depression arising from a feeling of hopelessness about our situation and anxiety for the future.  There are days when I feel I am preparing for some impeding doom that will swallow me up and obliterate me. Yet other days, weeks even, I can walk about in a much  happier frame of mind.  

I now take medication for the depression, something I fought against and refused for a long time but which has helped with regulating my mood.  One enormous bonus for me is the sedative side effect of the medication (one of the reasons my particular tablet was chosen) which means I no longer suffer from insomnia.  Being able to sleep and get some rest has increased my ability to cope with caring for my girls both physically and emotionally.  They feel more secure too because I'm not emotionally yo-yoing around them either.

Together as a unit we are having family therapy too ~ the format for it has been tweaked to suit the girls needs.  It is proving to be beneficial, a place where we can talk about the issues that are affecting us with the aid of a mediator.  This is not to say we are a distant family unit ~ far from it.  If anything we have been told we are all too polite to each other and hide our real feelings so not to cause upset.  4 out of 5 of us are on anti-depressants, which makes me feel sad ~ could I have taken steps to avoid us arriving at this place?  I don't think I could have, I think life has just been particularly hard on us over the past 6 years which has brought us to the place we are in right now.

The future isn't bleak, I know we will all tame our demons in time, given the right tools and support to do so.  For now though, acceptance is half the battle, acknowledging the beast and knowing how it likes to manipulate is a step towards controlling how you react and respond to it's jibes.

Chronic illness, depression, anxiety ~ three foes to face and overcome.  We will, I am sure, accept and tame them ~ but for now we will also have to acknowledge that there will be wobbles and dips along the way.  I used to be ashamed of having depression and taking medication ~ I'm not any more.  I recognise that it is a reaction to life experiences that is only normal and human to succumb to, I will try to stop feeling guilty for what I cannot control and I know for myself and the family we are strong enough to rise up.

 I love this "every seed destroys its container or else there would be no fruition"
 I no longer view depression as a sign of weakness.   I am no longer ashamed to say I am depressed and take medication.  I urge anyone who feels they may be suffering from depression to go and speak to their GP, or ring MIND to get advice/referrals for treatment.  Please don't feel you have to suffer alone and in silence.  There is help and support available to you if you just take that step to seek it.

Thursday, 22 May 2014

What if?

What if we had done things differently and taken the other path?
I have been thinking an awful lot recently about the choices myself and Dave have made since having our children.  What if we had done things differently - would they still have become ill with the chronic illnesses they have and suffer from mental health issues? We moved from the countryside to the city and the girls haven't enjoyed the freedom to roam the same as we did as children, due to our fears for their safety & the busy roads and unfamiliar surroundings.  Are we, as a society, far to overprotective of our children now?  I remember having the freedom to go out and be with my friends, without a mobile phone, from morning 'til night.  My parents and my friends parents weren't worried or anxious about where we were ~ why has that changed?

The pressures of modern day life, expectations of how you should measure up and perform, how you look, dress, behave ~ all seem to be under the spotlight far more than I remember when I was younger.  This seems to put huge pressure on our children.  

I wish I could whisk my girls back in time to when I was young and growing up in a small Lincolnshire village, surrounded by trees and fields.  It was a time before laptops, mobile phones, i-pods, sky TV and  x-boxes.  You could walk down the main street and everyone would know your name, your parents and relatives.  You felt as if you belonged, safe, inside a small friendly community. Instead of socialising alone in our rooms via technology as children tend to do now, we arranged to meet up with our friends the night before.  In the morning we'd roll out of bed, throw on our jeans, t-shirt & trainers before climbing onto our bikes for a day of who knew what, we let the day evolve ~ we would only return dishevelled and grass-stained in time for tea, happy and exhausted.  

We swam in the local outdoor pool during the summer, built dens in the woods, rode our bikes on the "ups and downs", scrumped whatever we could from farmers fields (I remember once trying to make potato salad from uncooked potatoes!), paddled in streams, climbed trees and just generally had a fabulous time.  Modern day children don't do these things any more do they?  My girls once inspired by tales of our childhood went to our local park to climb trees only to be told to come down by a policeman walking by because it posed a "Health and Safety" risk, the same with building dens on the fields behind us.  It seems the old playground games such as British Bulldog have also been banned ~ children are no longer allowed to play rough and tumble in case they hurt themselves.  Isn't that part of life?  You hurt yourself and learn to then pick yourself back up and carry on.  The community feel seems to have dissipated too, villages are expanding, new people move in, old people move out and it's not so easy to know everyone in your local area any more.  Don't get me wrong, change can be good, new technology life saving and makes life so much easier ~ but a large part of me still hankers back for the old quiet friendly village of my youth, with it's old fashioned shops and small community feel. 

The woods I played in as a young girl.

I do wonder if my girls are all suffering from their mental health problems because of the way society is now.  Are we all too disengaged from our surroundings and other people around us ~ we find it so much easier to connect via the virtual world. 

All of my girls suffer from anxiety and two from depression, then there is their chronic illnesses to contend with on top of that.  Would their lives have been any different had they been able to live their childhood the way both myself and Dave did?  Has the city living and technology played a part in their mental and physical health issues ~ would they be stronger and healthier had they lived a technology free childhood in the countryside?  I don't know the answers to these questions, but I will always wonder. 

Is it a natural parental trait for you to blame yourself, "what if?" I had done this or that differently? I will always wonder.

All we can do now is try to teach our children to get outside as and when they can, to reconnect with nature, their surroundings, listen to the birds, smell the different scents that come with each season and to enjoy it quite simply for what it is. To believe that they can look, dress and behave how they want to without thoroughly analysing whether or not it would be acceptable with their peers, and whether they would be teased or ridiculed for just wanting to express themselves in their own unique way.  I try to teach them that life is for living your own unique way, to do what you can when you can, how you want to and not to be hindered by wondering how it will come across to others. 

Our choices have been dictated by my girls mental and physical health, their road isn't the same as their friends, they are having to negotiate an unknown path - but although it may be scary and dark in places, together I am sure we will be able to overcome these patches and bring them forward to a place where they can flourish and grow, find their own paths in life and not fear the opinions or ridicule of others. 

So, back to my original question, what if? 

Who knows, perhaps our lives are this way for a reason we don't yet know, perhaps it is to direct us towards a path we would otherwise not have followed.  I would like to believe that this is true and will try not to allow myself during my dark days to blame myself for choices I made on the girls behalf during their formative years. Perhaps fate ensures you find the path it has laid out for you and whatever choices you make it will end up where it wants you to go.


Thursday, 15 May 2014

Mental Health & M.E. - let's talk about it!

As the end of both M.E. Awareness and Mental Health Awareness weeks draw to a close I just wanted to share with you the two blog posts I wrote specifically for the purpose of raising awareness.  

I have been brutally honest in accounting our story and hope that it helps others who are currently feeling alone and needing help and support - please go to your GP and ask for help, get yourself referred for assessment ~ you don't have to suffer in silence, help and support is out there.  Don't be fobbed off and follow your gut if you feel something is wrong.  We have found that sometimes you have to persevere if you don't get the referral you want first time.  There are links above, under my blog title which will take you to Invest in ME Research, Let's Do It for ME and Black Dog Tribe should you want to look for further links and information.

I am hoping that the biomedical research that is underway will lead to future diagnostic tests, treatments and cures for M.E. and that people continue to talk about both ME and Mental Health issues to de-stigmatise them.

Thank You

Wednesday, 14 May 2014

Mental Health Awareness Week ~ Our Journey.

Anxiety, Depression, Post Traumatic Stress Disorder, Hallucinations.....
did you know, 1 in 4 of us will experience a mental health problem in any year?
This week is not only ME Awareness Week, Sun 11th - Sat 17th May ~ (you can read our ME awareness blog here) but also Mental Health Awareness Week which runs from Mon 12th - Sun 18th May.  Sadly as a family we have been blighted by mental health issues and ME, we feel sharing our stories can help lift the stigma and allow people to feel more comfortable and secure about asking for help and letting people know that in truth they aren't okay and would like some support. 

My husband has been taking anti-depressants for some time now and has recently embarked upon a course of CBT to help him find coping strategies for our unique home situation, our problems can't be resolved as they are caused by chronic illness and so we require assistance to help us deal with them instead.  I have only recently been on the antidepressants as I fought against the advice to take them for a long time, I am ashamed to admit, because I gain weight on the tablets available to me (I react to a number of the medications and so have very little choice of medication open to me).  Since taking them I have found some relief from the dark pit of despair I had fallen into but have also had to accept the weight gain that has come with taking them.  I have the support of a fabulous therapist who I see to vent and talk about our situation, it is my safe place to express myself and get support and advice.
I also have three daughters, one with ME, anxiety & depression, another with ME and anxiety and my third with Aspergers, PTSD, anxiety & depression.  Although my husband and I have our demons, as adults we can share and express our thoughts to each other but it is far harder to see your children affected, as it accentuates their vulnerability.

Two of the three girls hear voices.  Keisha hears differing voices inside her head, sometimes clearly and others she can't distinguish what they are saying. We have been reassured this is a relatively rare reaction to her PTSD.  My other daughter though has had increasingly worsening issues and difficulties these past weeks and became so ill we had to go for an emergency appointment with our psychiatrist.  Her medication was changed over 6 weeks ago and hadn't suited her and we found just wasn't working.  We had noticed that her mood had been dropping lower and lower since switching and she had hit rock bottom and reached crisis point.  On top of that she has also been experiencing visual hallucinations and more worryingly auditory hallucinations, which in her case presented as old men talking outside of her head, sometimes a whole crowd of chattering voices, speaking not quite clearly enough to hear what they were talking about, just a whisper away from getting what is being said and then it's gone and reverts to mumbling voices.  These happen mostly whenever she's quiet or alone, day or night and on a daily basis.  The doctor has reassured us that she feels it is nothing sinister but something called hypnagogic hallucinations. These, she feels, are occurring as a result of extreme tiredness due to my daughter having such a bad relapse and her ME being severe, on top of that her medication switch for her depression hasn't had any effect which has resulted in her sharp decline in mood.  So - we are trying a new anti-depressant and are going back for a review in 2 weeks.  We have to watch her very very closely to ensure that she doesn't show any suicidal traits and have an open line to call should we become worried between our appointment and now.  It is hoped that the voices will dissipate between now and then, if not, further investigations will follow to explore their cause.

The hallucinations as experienced by my daughter can also be accompanied by other psychological or cognitive symptoms including:
  • Anxiety, irritability or agitation
  • Changes in mood, personality or behaviour
  • Confusion, forgetfulness or disconnectedness
  • Delusions
  • Difficulty with memory, thinking, talking, comprehension, writing or reading
  • Heightened arousal or awareness
  • Mood depression or elevation
  • Mood instability
  • Poor judgement
  • Sleep disturbances
  • Withdrawal or depression
Our psychiatrist has discounted the following causes for my daughters hallucinations, but as I said earlier, if they continue after her new medication has had time to take hold then she may re-assess as they may be caused by psychiatric conditions including:
  • Bipolar disorder
  • Psychotic depression (depression with disordered thought processes)
  • Schizoid personality disorder (disorder characterized by detachment and isolation)
  • Schizophrenia
  • Schizotypal personality disorder (disorder characterized by a need for isolation, odd beliefs, and disordered thinking)
However, these hallucinations can also have other causes (as my daughters) including:
  • Brain tumors
  • Delirium
  • Dementia
  • Medication side effects
  • Seizure disorders
  • Severe fatigue  (this is what is currently being considered to be the cause, due to her ME)
  • Sleep deprivation
  • Substance abuse
  • Vision or hearing loss
You can read more about this here: 

Auditory hallucinations are much more than false perceptions. The combination of personalized contents and interpretational processes contributes to a dynamic and emotionally charged experience that can be better described as a belief system rooted in a perceptual experience. Auditory hallucinations are most likely to arise because of an interaction between perceptual, cognitive, and biological vulnerability as well as affective factors and contextual influences. In addition, the interpretation of these experiences combined with delusional elaboration makes auditory hallucinations a complex and truly individualized phenomenon. Understanding their complexity can lead to useful insights for therapy. - See more at: http://www.psychiatrictimes.com/schizophrenia/auditory-hallucinations-psychiatric-illness/page/0/3#sthash.a45XtqJW.dpuf
Auditory hallucinations are much more than false perceptions. The combination of personalized contents and interpretational processes contributes to a dynamic and emotionally charged experience that can be better described as a belief system rooted in a perceptual experience. Auditory hallucinations are most likely to arise because of an interaction between perceptual, cognitive, and biological vulnerability as well as affective factors and contextual influences. In addition, the interpretation of these experiences combined with delusional elaboration makes auditory hallucinations a complex and truly individualized phenomenon. Understanding their complexity can lead to useful insights for therapy. - See more at: http://www.psychiatrictimes.com/schizophrenia/auditory-hallucinations-psychiatric-illness/page/0/3#sthash.a45XtqJW.dpuf

The above quote is sometime expressed frequently by my daughters when experiencing a low period - that and at times expressing the desire to no longer being alive because life is just too painful and difficult.  This is heartbreaking to hear as a parent but yet we can understand how awful it must be for a child to feel so constantly depressed, anxious and fearful. I do keep repeating to my children though that depression isn't something to be ashamed of, it is not a weakness.  As a family we have weathered too many storms in too short a period.  This has impacted on all of us, 4 out of 5 of us are on anti-depressants, we are all going to see therapists individually and as a family.  We have been told most people only experience one or two of the traumas we have had, not so many and in short succession. 
However, not only do they have to cope with depression, all three daughters suffer from anxiety.  This makes trips out interesting and we have to plan where we go and what time we go, to be sure that it is the quietest period possible but to have a quick exit plan available should it be too much for them.

I found this picture (below) on the internet which could be any one of my girls explaining how their anxiety & depression makes them feel.
The problem we have though, is that the treatment for anxiety and depression (along with medications) is to work with a therapist and get "out there" and face their fears taking slow progressive steps.  This is difficult when you have ME as you have to rest, plan your day and limit your activities to manage your energy levels - picking the most important/vital activities first and then seeing if you have any energy left in the pot to do anything else, which more often than not is very little.  So we are left with only using talking therapies as the doing isn't possible, we are currently waiting for specialist therapists to become available for the girls with workers who can try to utilise the CBT approach but adapt it to suit the energy levels the girls have available.  I hasten to add that the CBT approach is NOT to treat the ME BUT to help the girls find coping strategies for their anxiety and depression.

We are aware that we have a long road ahead of us, our problems aren't going to magically go away or resolve themselves.  What I want to do instead is talk about these issues, and share with you our experiences.  A huge number of the population suffer from anxiety and/or depression and it is still quite a taboo subject for some, they feel embarrassed or ashamed for needing help and feeling this way.  It is NOTHING to be ashamed of, there are times when you simply have to step back and ask for help.  It takes great strength to do that, it is definitely not a weakness.
So, for now we shall take it one hour at a time with our fingers crossed that my daughter responds well to her new medication without too much of a wobble between the transition of coming off one drug and going onto another.  I am hoping that she is soon able to get some relief from the voices and can manage to get some refreshing sleep which she so desperately needs.  For all the girls I hope that the future will find them on top of their anxiety demons and able to feel comfortable in public spaces without shaking, sweating and feeling the urge to run away and hide.

Monday, 12 May 2014

The Significance of May 12th

Today, May 12th, is ME/CFS/FM International Awareness Day.  

M.E. stands for Myalgic Encephalomyelitis.
  • ME is a serious, disabling and chronic organic (i.e. physical not mental) disorder.  ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting approximately 200,000 individuals within the UK.
  • Of that number, approximately 25% of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair & bedbound and dependent upon carers for their everyday needs. 
  • The Chief Medical Officer’s Report on the subject of CFS/ME, issued in January 2002, recognises that it should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease
  • To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.  
In the UK it is generally believed that at least 250,000 suffer from the disorder.
ME/CFS Some Interesting Facts
  • May 12th was chosen as International ME/CFS/FM Awareness day because it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS. 
  • Myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), is a neurological illness (affecting a person’s nervous system).
  • Myalgic Encephalomyelitis means pain in the muscles, and inflammation in the brain and spinal cord.
  • It can occur at any age and can affect children as well as adults.
  • Women are about three times more likely to get ME than men.
  • Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or fulltime, while reducing other activities.
  • About 50 per cent will have a moderate to severe form and not be able to get to school or work.
  • Another 25 per cent will experience severe ME and be housebound or bedbound.
  • Contrary to popular belief, more than one member of a family can have ME/CFS.
  • Cher in 1992 had to take time out of her career she thought she had the Epstein Barr virus, but later turned out to be ME/CFS.
  • ME/CFS, by different names, dates back to the 1700s.
  • On average, many people with ME/CFS will have improvement in the first five years, but others may remain bedbound or highly housebound for life, or may suffer relapses throughout their lives.
  • ME/CFS often begins abruptly, but sometimes the onset is gradual. In about one-third of cases, the sudden onset follows a respiratory, gastrointestinal, or other acute infection with flu-like symptoms, including mononucleosis. Other cases develop after emotional or physical traumas such as bereavement or surgery.
  • There is no treatment or cure.
 Our Journey with ME
ME came into our lives in 2010, affecting my youngest daughter first.  She hasn't been able to attend mainstream school since then.  My middle daughter fell foul of ME after suffering from viral meningitis and had to give up her GCSE's as she was too unwell to access her education. Our lives as a family have been irrevocably altered.  ME is a cruel illness, it cares not who it affects, how old you are or what plans you have for your future.  Prior to Tara becoming sick we knew very little about ME, it was only because we were faced with the harsh reality of the illness that we start to research into it.  We are hoping to change public perception, sufferers need to be understood and supported, there are far too many derogatory myths which need addressing and the truth about this illness needs to be shared.  I hope for a future where sufferers are believed, supported and helped by everyone and not only from within the ME community.

In a bid to address these myths Tara made a video to try to explain to others how this illness has changed her life and also to raise awareness about it and the need for support and understanding from others. She made this when she was only 12 years old (2 years after her initial diagnosis). We have been using this video ever since.
Now that Tasha has also been diagnosed the girls felt that it was time for a new updated video and so for ME Awareness month Tasha and Tara put their heads together to come up with a new one. They are hoping that the video will help raise awareness about the illness and with it hope for better understanding from none M.E. sufferers. There are no obvious signs of illness and this is why ME is sometimes called an invisible illness because of just that - you can't see it but it is there all the same.
Keisha also wanted to do something to help her sisters and other sufferers. She came up with the idea of setting up a Justgiving page to ask for donations towards Invest in ME Research, in return she would cut off her beloved dreadlocks and shave her head.
This was a  HUGE deal for Keisha as she suffers from Aspergers plus anxiety and depressive disorders. Her dreadlocks gave her a sense of identity, she knew without them she would feel incredibly exposed and vulnerable. But true to her word on Friday 2nd May, Keisha had her dreadlocks cut off by her sisters and then her head shaved by Tasha afterwards. If you would like to participate in helping us to raise funds for biomedical research into this illness you can still donate via https://www.justgiving.com/keishasdreads and help Keisha raise as much money as she can and to achieve her goal of £1000.

Every year at this time we try to do something as a family too. This year we decided to repeat last years Walk for ME & signed up as a family team. We managed a 2.5 miles along a beautiful canal path with Tasha and Tara both in their wheelchairs, The Dave & Keisha pushing, I juggled the 3 dogs & Keisha's boyfriend Jack took some photos. We are thrilled to announce that we have reached well over our target of £100 which is amazing.  Thank you to everyone who supported us.
NOTE: In N.Ireland, there are no specialist clinics for ME or Fibro.  The Newry and Mourne ME and Fibromyalgia Support Group have created a petition requesting that the Canadian Consensus Criteria be adopted there, and a new clinic set up.  Please consider signing this petition to help this cause.  It is hoped to be presented towards the end of May, after Awareness Week.
Fully Adopt CCC for ME in N.Ireland
I wrote our M.E. blog today as part of an awareness blog bomb; (#May12BlogBomb)  
A link to direct you to all the participating blogs is below;
 Thank you.