Progress

Last week was quite simply pants because I had to spend most of the week in bed with flu and a raging fever feeling like a wrung out dishcloth. 

Thankfully, this week the fever has left me but just so I don't feel too lonely it made sure a cold and husky throat remained to keep me company (how kind!).  At the start of this week The Dave and girls couldn't help laughing at me, as my voice kept disappearing and coming back with the odd squeak, much to my annoyance (as a control freak not having the use of my voice with which to bark out orders to the rest was mightily inconvenient and a great verbal holiday for the rest of the family). The squeak then developed into a new deeply unpleasant man voice, all be it one that sounded as if it had smoked heavily all it's life.  However,  I am pleased to say that today I have a voice - a little wobbly and husky but still a usable voice which is also no longer a chesty manly one too - thankfully.

This week has not only seen the start of a recovery from flu but also some real plans for the girls healthcare.

On Monday we went with my eldest for her review with the psychiatrist, where we discussed her urgent need one to one therapy whilst waiting for the specialist therapist to become available (long 6 month waiting list time) and so this is now being organised via CAMHS asap to hold her in the interim (although there will also be an inevitable waiting time) and thankfully the change of medication should soon start to show some effectiveness over the next few weeks, as it build up in her system.  We had some very interesting discussions and the upshot was that we feel that we will also benefit from revisiting family therapy -  not the usual format (as we had in the past) but with our lovely liaison worker (guided by the psych), to make the atmosphere less intimidating no two way screen or listening support workers either and to use modelling clay, paints etc during the sessions to keep it informal and light whilst talking about the more difficult issues.  Starting it all in a fortnight - so hopefully that we will all benefit positively from this.

On Wednesday morning we had a massive team meeting to review and plan future care for both the youngest with regards to their mental health and ME issues.  It was led and chaired by our CAMHS liaison worker and supported by our pscyh and other therapist from CAMHS. Also involved were the Medical school team, and private Paediatric Consultant on speaker phone - with minutes being sent to the OT (who we had yet to meet) and our NHS Paediatric Consultant for middle daughter (who weren't able to make it due to work commitments).

Anyway - this meeting was the BEST we have had EVER - and that's something as we have been through years of meetings, reviews and assessments and never experienced anything as supportive and positive as this.

At the beginning The Dave read out the letters from the girls stating what they felt they needed and how they were both physically and mentally right now.  I hasten to add both girls were invited but were not well enough to attend on the day.

We then approached each daughters care plan individually, discussing each health care providers  vision of care - where we were now and how it could be made more holistic with cooperation from all the other elements involved.  Medical school stated they had an obligation to teach our middle daughter but had barely seen her due to ill health - so the psych said she would formally write a letter stating she was not fit for education of any kind and that would resolve that issue.  Our plan for the middle daughter was to work with the specialist OT to help her regain some strength and physical fitness and utilise her passion for art and photography as activities to use when pacing (instead of school work) and in conjunction with CAMHS support to build her up very slowly and gently.  Her therapist agrees that CBT would help with her anxiety issues and so the psych is pushing that referral through and in the meantime is going to spend more time with her to review her medications (which her Consultant feels may also need increasing) and get her current therapist to work alongside family therapy and the psych appt's until she is handed gently over in a slow transition to CBT as she gains some strength.  Our lovely private Consultant will also now slowly handover to our NHS Consultant who now has taken our daughter on (instead of his registrars who kept changing every appointment) - so that we will be working with a small team and always seeing the same people for improved continuity and communication.

For our youngest daughter it was mentioned that she was under a different Consultant and only saw his registrars, who again were always changing creating lack of continuity and progress. So our psych will be in touch with the hospital on our behalf and switch her across to see the same Consultant as her sister (and NOT his registrars) - as sibling usually go under the same doctor and will help minimise the different people involved and improve quality of care.  She is also being referred to the same specialist OT as her sister for rehabilitation care and her CBT referral being chased up (as we are in the position of having been accepted but not allocated a therapist yet).  Her schooling was also discussed and agreed to slowly increase her time at home with the home tutor, then move her to the hospital school room, still with one to one with her tutor from home and then build up her time and stamina there until she can tolerate 8 hours of schooling a week - when we reach that point it will then be a case of transitioning into mainstream school for her 4 hours of English and 4 hours of Maths lessons a week alongside her peer group and spend a few of the break times there too for socialisation.  This is obviously going to be a slow journey and will take months to progress - but we are being supported with this by the doctors, therapists and OT and so hopefully we can monitor her ME and try and prevent pushing too hard too fast and any major relapses (which have happened in the past and been so severe all schooling had to be halted).

The next meeting has been made for June with all the same parties being invited, also the NHS Consultant and OT hopefully being able to join us for that one too.

Then - on the same Wednesday but in the afternoon we met the OT (with middle daughter) who just was so kind, understanding, supportive and "got it" - such a massive relief.  She also said she would look out for youngest daughters referral and would definitely take her on and it should only be a matter of weeks before she would be able to see her too - so not too long to wait.  So middle daughter has a few charts to fill in (with my help) to get baseline abilities and has also agreed to go to the OT group once a week for an hour from 11am to midday on Tuesdays to do crafty activities with other girls aged between 14 & 19 years old - so a great age mix too.  Her pacing activity for this week is just to get up and dressed every day - nothing more, just that.  We have committed to attending the group and were told if she is feeling really sick just to take her in in her wheelchair and they would care for her - she wouldn't have to do any crafting but to be with them so they can see and assess her and then have the knowledge to then address her issues when on bad days.

Today though - is our biggest success (as she had been suffering days with constipation just when we needed a small poop!) - we managed to get a stool sample for middle daughter too - so we can send it off for testing to see if she has Crohns or Ulcerative Colitis.  Now we have to wait for 2-3 weeks to get the results as it gets sent away for testing.

ALSO - today my eldest daughter had a fabulous idea - she had bought a blank canvas and some children's water based paints and wanted to make a piece of dog art!  So, as it was a lovely day outside today and eldest had the afternoon off College and we have no appointments to attend to - we went for it.  The youngest two were very tired and aching but managed to gather up some energy to participate (the warmth of the sun did help a little) and they proceeded to fill paper plates with paint, the dogs were then fed treats in return for having paws put in the paint and asked to walk on the canvas, it was great but messy fun!  At the end we all put our hand prints in each corner and finger painted our names onto the canvas too.  Then it was time for dog baths and for me to hose down the patio and decking!  Once the canvas is dry we will seal it and then it will be ready to hang.

Needless to say the youngest two are now pooped and fast asleep - most likely they will also get PEM over the next day or so - but we have an album full of photos and a colourful canvas to remind us of the fun we had.

For the first time in a very long time, this week I feel that we have hope.

I am incredibly grateful to the team at CAMHS for streamlining our medical care team on our behalf and contacting all the necessary parties to ensure that the channels of communication are kept open and that everyone is informed and kept up to date with all treatments and care plans that are being made.

It has taken us literally years to get this far, we have been through a number of different departments and medical teams at the hospital in order to find the practitioners who are the perfect fit for our girls and we certainly couldn't have done it without the help from CAMHS and in particular our family liaison worker there who has been phenomenal.

So whatever your circumstances are right now, however hard life is - please don't ever give up hope.

~ Blessed Be ~

x~X~x

Small Healing Steps

This past week has been harrowing, some difficult issues have been addressed and we have been thankful to all the agencies involved for their help and support.  There is a long road ahead of us, but we can see a glimmer of light ahead - it may be far away but what is crucial is that it is there and we can see it for the first time in many, many months.

One very important lesson we have learnt and wish to share is that you should always follow your gut instinct and believe in yourself no matter what others may say.

We have been thinking about the peaks and troughs we experience living with chronic illness - the emotional turmoil and journey we are undergoing which has been likened to the stages of grief;

• Denial and Isolation,
• Anger,
• Bargaining,
• Depression
• and finally Acceptance

The sufferer/s may go backwards and forwards through these stages until eventually acceptance of what has happened is reached which enables you to move forward from that and live within the confines and limitations of the illness.

I found an interesting article on-line which discussed this in a similar way - but the stages they had were specifically for the chronically ill;

• Crisis,
• Isolation,
• Anger,
• Reconstruction,
• Intermittent Depression
• and then Renewal.

Crisis This is when you are in the acute stage of the illness and experiencing the terror and panic this brings with it.  You are confused, angry, scared and may well withdraw into yourself as you try to make sense of what is happening to your body.  You can't think straight, are in pain and dealing with the many unpleasant symptoms that are ravaging your body.  Family, friends, carers, who are close to you feel overwhelmed by what is happening and the changes that have occurred. It is an anxious time for all involved.  You find it hard to know how to respond to well wishers sending get well soon messages, when there is no known end or resolution to the situation - when you have a chronic illness how are you supposed to reply? Carers are rarely adequately supported and can often become completely exhausted and full of self-doubt wondering if they are doing everything right - should they be doing more or doing it differently?  At this time there is usually a flurry of  doctors and therapist appointments, more so than later down the line - often an awful lot of conflicting information and treatments offered.  It is a highly stressful and frightening time.  Most of all for all parties involved is the fear of the unknown - what does the future hold?

Isolation This is often when the reality of the chronic illness hits, that life will not be the same again.  Hopes and dreams that were held before may not now be achievable.  The knowledge that you will never be fully fit again and the thought of this can be devastating.  Friends tend to drop away and give up on the ill person because it takes up too much of their time and energy to support this friendship. Sometimes the lack of contact could be because the friend doesn't know what to say or how to deal with the situation - others may say "well you never make the effort to come and see me" as they don't fully comprehend the limitations of the patient.  Or that "you don't look sick" and so don't believe that they are ill but just pretending.  You also may find it difficult to share how limited you are and not be able to reach out and ask for help - especially if you were very independent before.  Feelings of guilt for being ill and not being able to do what you used to, having to have help and support may bring on feelings of negatively about yourself and not wanting to acknowledge the illness or talk about it and just withdraw into yourself.

Anger This is occurs when, after suffering mental and physical pain, anxiety, fear, feelings of worthlessness, helplessness and thoughts that life is unfair and unjust to do this to you brings on a rage and anger at life, the illness and everything around you.  The rage may be turned inwards and can lead to self harm (or even in severe cases suicide) - experiencing overwhelming feelings of despair that this has happened to you.   The fact that there is no visible opponent to fight makes it so incredibly difficult to make any sense out of it all and that there is no cure or known treatment.  The fear of  relapses and worsening of symptoms, having to rely on others for help, not being in control of how your body behaves all lead to this anger and frustration. What makes it worse is that frequently feelings of blame can be reinforced by society - you look fine to me, you don't look sick, why don't you push yourself more and get some exercise, you're just lazy.....Medical doctors are known to get angry at patients with chronic illness because they can't do anything to make them better, sometimes the anger can be passed on to the family and carers, they are blamed for enabling the illness somehow.  This is the most difficult stage to negotiate - both for you and your family and carers.   The feelings of loss, lack of control and fear are just so strong.  The only thing family and carers can do is to remain supportive and try - even though it takes tiny baby steps, to give you some control back over your own life.  Set very small realistic goals such as - today I will sit up in bed and brush my own teeth.  Focus on the your strengths and only set goals that can realistically be achieved - this helps you regain some small control over your life and help ease the anger.

Reconstruction This stage occurs once you are out of the acute phase of the illness and into the more stable phase.  Yes there will be relapses and ups and downs but nothing as severe as when in the acute phase. Feelings of having more control and stability help to make it possible to focus on new possibilities. After losing friends and even members of family during the previous stages this is a time when new contacts are made with people who are understanding and accepting of the illness.  It takes pressure off you if you only people around you who don't drain your energy by their demands - having people who are understanding if plans are cancelled last minute because of a flare up without any blame or guilt being placed upon you.  The family/carers who have stuck around you adjust to the new regime and a new "normal" is established. This phase is all about discovering new hobbies and skills and finding emotional stability and peace.  Learning to adjust life around the limitations of the illness and overcoming the anxiety and fear to discover a new found inner strength and feelings of self once again.  To discover that you do not have to be defined by the illness, life is there to be lived - understandably it can't be the way it used to be but a new path with promise and hope and the possibility of happiness.

Intermittent Depression No one is invincible and there will be times when nostalgia is triggered and memories of what life used to be before the illness hit.  This is normal, understandable and to be expected.  It could also come in times of relapse when memories of the terrible acute phase come flooding back and the fear recovery back out of that phase will not happen.  Grief of what life used to be and how life is now - hopes and dreams that are no longer achievable can hit hard. Counselling is often useful to help provide you with the tools to get through these times, so when it happens again in the future it isn't so severe or frightening.  This gives a sense of understanding of why these feelings come and a new resilience against them in the future. For family and carers - when this happens don't ignore what the patient is going through or minimise the distress they are in, try and remain positive and so when they say if only I could do...like I used to, help them to re-focus on what they ARE able to do by saying...okay you can no longer do this BUT you ARE able to do this..  NEVER tell them to snap of it or pull themselves together!  Depression is real and there is help to get you through it - don't ever feel guilty if you suffer from this - it's far more common than you think.  Family and friends should always support the patient for getting through each day - not just when they have a relapse - life is difficult living with a chronic illness and every day a challenge - it helps to remember that.

Renewal You never forget what might have been, what has been lost to you and those unanswered possibilities that the life before may have held for you.  It's a time of acceptance, if you use a wheelchair - so what, it helps you live the life you want to lead, don't be ashamed about using it - be proud that you are accepting that it allows you to live life more fully with it, it doesn't mean you have to like it - but you accept it. You move away from the fear and move towards acceptance and are willing to learn new skills, make new friends both well and those who are also chronically sick. Develop the new life that is now in front of you.  If people are bothered by you and the way you are then move away from them, only have the people in your life who are supportive, accepting and loving towards you.  You are not alone, there are others in the same situation as you - that's why it may be beneficial to also get to know them too and you will feel less isolated and gain support, friendship and understanding from these contacts - a feeling of belonging to a group who "get" you.

The above is just my take on the article, it makes interesting reading so here is the link if you would like to read it for yourself;

shadowsoffibromyalgia.wordpress.com/2010/07/14/understanding-the-stages-of-chronic-illness/

Wishing you all a good week ahead and please don't ever feel you are alone.

~ Blessed Be ~

x~X~x

When it all Changed

Take me back to May 2010, a day of mixed emotions and remembrance as myself and the girls, supported by Dave, completed the Race for Life in memory of my mum who sadly passed away after suffering for many years with None Hodgkin's Lymphoma in  December 2009.

When I look back I remember what a beautiful day it was, the sun was shining and the event was full of laughter and positivity.  After receiving our medals we all kicked back on the field and enjoyed ice-creams, silly banter and just enjoying the moment, the fresh air and sunshine.

Little did we know how soon all this would change. 

Throughout 2009 we had noticed Tara, our youngest daughter, seemed to pick up every virus and bug that was going around school, in October of 2009 she caught swine flu and was very sick with it, even with the antiviral medication.  After that she suffered many frequent throat infections and in 2010 she started missed huge chunks of time off school, which started to raise alarm bells with them and insistence that we send her in, even when sick. We were even told that if her throat was too painful for her to speak she could carry a notepad around and write down what she wanted to say instead! (This is regardless of the fact that she was in pain, feeling terrible and had a high temperature AND doctors notes to support why she needed time off school). 

Eventually the throat infections became more severe and she had pustular tonsillitis over and over which then gave way to what they thought was Glandular Fever, so the school were notified and more time was taken off.  However, when she still didn't get any better the decision was made to have blood tests to see if it was Glandular Fever or if anything else was going on.  The bloods were taken and results all came back as negative - at this point it was decided to refer her to the Children's Hospital for emergency appointment, we were seen quickly and after further tests and physical examination the diagnosis of ME/CFS was given. 

By this point Tara was just so exhausted she would fall asleep on the floor, in the middle of eating her dinner, even halfway through speaking a sentence.  She spent months just sleeping, unable to go into school, keep up contact with her friends or do anything productive at all.  She had chronic back pain and awful nausea meaning she could barely eat and lost an awful lot of weight.

During the next year we visited pain clinics, physiotherapists, occupational therapists, clinical psychologists and regular clinic appointments.  We tried GET which caused her to become even more sick, we tried hydrotherapy as it was thought to be more gentle on her body but that wasn't tolerated either.  Eventually we pulled back out of all hospital interaction and maintained only contact with the clinic.  We de-registered her from school and sought the help of an osteopath to provide lymph drainage therapy and help relieve her terrible back pain. Then came a time of rest, many months in bed or on the sofa and a wheelchair for outside excursions.  

At the end of 2012 we sought a second opinion from a private doctor as Tara had started having seizures, hallucinations, blackouts and extreme fatigue along with more weight loss.  This Consultant was incredibly up to date on ME and was very sympathetic and understanding.  He ordered 24 hour heart monitor and brain monitor for her to see if seizures where due to epilepsy or heart abnormalities and also referred us to a nutritionist he could recommend who understood the needs of children with ME. 

The results of the tests were all normal except she had a faster than normal heart-rate.  We stopped all medication and this has eased a little.  With nutritional supplements and change of diet Tara has gained some stability in her ME.  She had a full gut analysis test which has shown she doesn't absorb fats well, most of it is excreted and that her immunity is far lower than the norm should be and that her friendly bacteria are lacking.  Her diet is focused on addressing this and although she is still very slender, she has managed to gain a little weight over the past few months. She has now regained enough strength to be re-registered at school, but educated off site. She has home tuition via the medical authority for an hour twice a week, until the time arrives where she becomes strong enough to then transfer into the hospital school-room and possibly even back into the mainstream school on a severely reduced time-table. 

She is currently still very sick but learning to pace and be careful with how she spends her energy.  We still experience severe relapses and she is currently having one now, but at least now she knows that she can climb out of these episodes and with pacing manage to have small pockets of a social life with friends.  She also loves film and editing work on her computer, we are having a bespoke green-screen made for her bedroom and so even when sick, on days where she has some energy she can play around with her camera and make short films/take photographs to edit.

M.E.

By Tara Mawer

Why am I sitting here alone

in my room?

Because it’s quiet

Peaceful

Calm.

I have C.F.S./M.E.

it makes me feel

cranky, tired

sick, sore, weak

and in pain.

I miss my friends

I don’t go to school.

I can’t

not well,

always ill.

Can’t read or write much,

too much causes my brain to stop,

causes headaches.

Sensitive to lights

and sound.

For me eating is difficult

nausea and dizziness

are always there.

Medication they give me,

so many tablets.

I have a computer

online friends

to keep in touch.

HOPE – I don’t give up.

One day my life

will be how it was before I had M.E.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tasha, our middle daughter, started to become sick in February 2012.  It all started with viral meningitis which made her very sick for a long time.  However, when she failed to recover week on week we became increasingly anxious and ended up in A&E.  She had a CAT scan of her brain which thankfully showed no swelling and so referral to outpatients at the Childrens hospital was made.  After several months of no improvement, with clear blood results yet increasing exhaustion, headaches, joint and muscle pains along with nausea and cognitive difficulties a diagnosis  of ME/CFS was given. 

She has not been in school since February 2012 and her ME symptoms have steadily become more debilitating, leading her to now be almost constantly bed-bound/sofa-bound and on good days able to be taken out in her wheelchair.  

She is unable to do much at all for herself, but on a good week is able to participate in approximately 20 minutes of home tuition.  She suffers from joint and muscle pains, digestive issues, nausea, hallucinations and intermittent paralysis of her legs.  Her social life is all but destroyed, although she has a couple of close friends who she mostly keeps in touch with via the internet.  She is still in the acute phase of this illness and we have no idea how long it will last, as every sufferer is different.  We hope that soon she will start to come up out of this stage and be able to pace and utilise her energy to allow her more participation in life.  Until then we can only support her and care for her as best we can.  To try and keep her spirits lifted and know that she will, one day, start to improve just as her sister Tara is doing.

Life through my Lens

By Tasha Mawer

Looking through my camera lens,

altering the focus,

Trying to get a good clear shot,

keeping it all in the frame.

Photography keeps me occupied

My life otherwise on hold.

It makes me happy, lets me see

the world in different perspective.

I have M.E. it sucks, so very tired all the time

whole body aches from head to toe,

every joint and muscle , legs hurt too much to stand,

Drugs for pain, drugs to sleep, drugs to eat!

GCSE’s now on hold, can’t get into school.

Will try to go to College in 2 years – so just

Postponed not cancelled -  still try though

A little each day in bed, keep the brain active!

Looking at my pictures, happy with the shot.

Pondering on why me – why now – why?

No answers, sadly come to me.

So try to just  deal with it day by day.

Some days are better than others,

I can walk about and have a laugh.

Others can’t get out of bed, can’t eat

Or talk or interact at all.

I have hope – I want to be a photographer,

To go to College and learn how.

To have my own studio and meet people,

To live, to laugh, to cherish life and love.

One day – I tell myself it will happen,

Cure will be found and treatments given.

So until then I get out my camera – watch

Others and dream of what will be…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~ Blessed Be ~

x~X~x

Act of Kindness

The internet is fabulous life-line for the chronically ill, it's a means for them to maintain contact with the outside world from their beds.  BUT since the internet invaded our lives we find you don't get letters any more do you? or postcards? Everyone prefers the immediacy emails or texts provide instead.   All our postie tends to deliver is junk mail and bills - but very rarely any actual proper hand written (not typed) letters.

Well folks, today a real letter was delivered through our letterbox - and addressed to my Tasha too!  I had to wait for what felt like ages for her to wake as she is particularly unwell now - her ME has progressed from moderately severe to severe and so most of her time is spent in bed (or on occasion on a bed made on the sofa) and she is struggling to text or keep in touch with people even via the internet.  Well - this letter was written by a fabulous volunteer who also suffers with severe ME, and enclosed with the letter was a hand-made card too.  Receiving this gave my daughter, who feels so desperately low, alone and sick a huge boost and brought a lovely smile to her face as I read it out to her.  These volunteers are such kind souls, writing such beautiful letters by hand and decorating them with little sparkles and messages of hope - full of understanding as they know exactly how she feels and what she is going through. 

It has made her feel a little less alone and part of a very special tribe.  It has given her a ray of hope for improved health in the future and the knowledge that someone out there is thinking of her and has been kind enough to write to her and be a friend.  Her sister Keisha has offered to write back at the weekend if Tasha dictates to her what she would like to say and enclose a little hand-made something back in return to repay the kindness.  How wonderful would life be if more folk did acts of kindness like this?  It has made me think and I am going to endeavour to do as many random acts of kindness that I can, as and when I can to try and spread a little happiness back.

Today has been a mixed bag for me personally.  I visited the doctors this morning for my third monthly BP check and review and was thrilled to see that I now have the BP of a 28 year old (to which my naughty husband retorted that he wished I had the body of one too!!) and had the satisfaction of seeing the prescription pad being pushed away, as medication was no longer required to bring my blood pressure down. I think a HUGE part of the reduction of blood pressure is due to the fact that over the past 4 weeks I have managed to lose 8lbs in weight and rarely drink alcohol any more.  The weight loss journey is only at the beginning but today has spurred me on to continue because it is already impacting positively on my health. Sadly though the aches, pains and fatigue are still ongoing and have been put down as being stress related illness - I am hoping that in time these will reduce too and not progress any further, as there is the risk of the ME diagnosis should they worsen or continue over the oncoming months.

My wonderful girls are continuing to struggle, Tara managed a birthday sleepover on Saturday with her two friends but is still paying for that - we had to cancel plans to go out for a special dinner on Tuesday (her actual birthday) as she wasn't well enough and sadly Tasha is currently bed-bound by this darn illness.  So we made alternative plans and bought in loads of naughty lovely nibbles and had a party buffet instead followed by a pj party snuggling under a duvet den for a family film night.  So all in all I think, despite the ME, she enjoyed her birthday.

PLUS - she received many monkey based gifts which she loves and I made her a vanilla and chocolate marbled monkey cake too.

I am hoping that this weekend we can all just hide away and rest up.  So I am planning to do some batch cooking tomorrow and get some comforting (healthy) foods in so we can snuggle and chomp away together in our pit and hopefully gain some strength for a good week next week (as I have optimistically booked us all haircuts as Mondays are the quietest days at our hairdresser, so perfect for the girls if I can get them there.   Thank goodness for blue badges & wheelchairs - we can park directly outside, scurry in, have a chop and scurry out again).

Wishing you all the best weekend possible.

~ Blessed Be ~

x~X~x

ME

Why Myalgic Encephalomyelitis have you come to visit us and had a devastating impact on two of my beautiful daughters lives?

N is so sick she can no longer get out of bed, she is having visual, olfactory and auditory hallucinations, intermittent paralysis of her legs and has nausea so badly that she can only eat overcooked plain boiled pasta or rice along with sips of water.  When she does eat the food just goes straight through her and leaves her exhausted, clammy and scared.

What have my children done to deserve this from you?

My girls are only 15 and 14 years old - you first arrived almost 4 years ago and then visited again 2 years later, breathing your evil poison into their bodies and stagnating their lives. You have robbed them of their childhood and freedom to mix and socialise with their peers, to party, have an education and enjoy their youth.  You have stripped away their confidence, ambition and readiness to burst into laughter.  N thinks she must be dying, she doesn't believe that an illness like ME can make you feel so awful for so long.  She see's her sister, T, who has ME for almost 4 years STILL suffering and limited and is wondering if anyone EVER improves or gets stronger from being this ill.  She now thinks that the doctors have got it wrong - that she MUST have terminal cancer.  Why else would she be feeling this ill for every minute of every day, for life to be such a struggle.

I want you gone, I want them better, to see the light shining bright and vibrant back in their eyes - for recovery, to be able to go out, to hear the sound of laughter ever present.  Instead they are mostly housebound, N is mostly bed-bound or sofa-bound, relying on her wheelchair when we go out. T is able to walk for limited distances so long as she has multiple rest stops - each and every activity means careful pacing and days of rest both before and afterwards.  I am just ever grateful for the internet and the invaluable link it provides the girls to the outside world and their peers - those precious few who have remained in touch.

More than anything though - I want answers.  Help from a united medical profession in providing a cohesive and agreeable treatment plan.  Somehow to find solutions to the unending pain, nausea, stomach upsets, hallucinations, sensory overloads - the list is endless and as yet untreatable.  

I want for the general public to understand that this illness is as real and debilitating as cancers, HIV, Lupus, MS - to be acknowledged and supported.  Not shunned, disbelieved and labelled as lazy, school avoiders and attention seekers.  I DO NOT want to hear that we are enabling the girls to "believe" they are sick, that they just need to pull their socks up and just get themselves up, exercise and get on with their lives!!!!

Most of all I WANT treatments, something to improve their quality of life.

It makes me sad to my core to hear of so many families affected and that there is often more than one sufferer in a family, sometimes multiple members.  It makes me question why - what is the trigger?

I feel deeply for each and every sufferer, for the ignorance they have to suffer every day.  For the parents who have to tread a very find line in accepting help and negotiating on what that may be in order to avoid the worryingly dangerous GET (Gradual Exercise Therapy) which we have tried in the past with a negative impact causing a huge relapse.  The fear is that if we, as parents, don't accept the offered treatment of GET and CBT that we could have the control over the care of our children taken away from us and treatment given without our consent.  As adults, if you disagree with a treatment you can refuse to have it without fear of further repercussions - it is not the same for children.  We are our childrens advocates, we do all we can to help them to regain the control over their lives and health - but we are cautious about what is offered and will not accept anything that may further damage their health.

I don't want you to go away with the thought that I am against all health care professionals - there are some fantastic, caring, supportive and forward thinking practitioners out there.  Sadly though, it is a lottery as to whether or not you are lucky enough to be able to be treated by one.  We have a fantastic CAMHS team to support the girls emotional health, who understand the psychological issues they suffer are due to the physiological problems they have and the impact that has upon their young lives.  Our osteopath is second to none and provides vital lymph drainage and manipulations to help the girls on a regular basis - she has become a friend and confident for myself and the girls.  In addition we have found a sympathetic and understanding Consultant, who sadly we have to see privately as he is out of our area.  He liaises as best he can with our local Childrens hospitals where we see different doctors every 6 months, which is not helpful in providing continuity of care (and something we are trying to sort out).  Our GP team are also kind and supportive and where possible provide help but are guided by the hospital and CAMHS teams as they are our main providers of care.

What we need is a cohesive treatment plan, recognised universally by all areas of the medical profession.  To have it recognised as NOT being a psychological issue and being fed through that system for treatment - but as a very real, damaging and severe physiological one and the impact it has on the neurological, immune & cognitive pathways.

It would be fantastic if government and research funding was re-directed towards biomedical research and away from the psychological governing bodies. 

But until that time I am frustrated, devastated and heartbroken - holding onto the hope that the hard-working and determined sufferers and their families, along with the Charities Invest in ME and Let's Do It for ME can raise their voices loud enough to be heard and succeed in finding the secret that will help our family and all other sufferers to receive treatments towards a better and healthier life in the future.

~ Blessed Be ~

x~X~x

Isolation

Caring for the girls is something I don't give a second thought about - they are my everything and I strive to do all I can, to be the best advocate, mother and friend to them.  Mostly I am perfectly happy in my bubble and these four walls.

However, just every now and then it hits me how isolated we have all become and how much the girls illness has affected life for each and every one of us.  Most evenings by 6pm I am desperate for the time to arrive when I can crawl into my pj's & snuggle down under a blanket with The Dave, sitting in quiet, comfortable silence.  I'm not a social butterfly, a party goer or the life and soul of a gathering.  I like being with people who understand our situation, who will ask briefly how the girls are, to acknowledge their illness and then knowing how limited my conversational topics are, to spend the rest of the time chatting about completely different topics - sharing their lives and adventures with me and making me feel included and involved.  We have a couple of wonderful local friends who we see when we can who do just this.  They know we can't plan to meet in advance and so are happy to socialise on a short notice basis.

However, as all carers out there will testify to - caring for others can put a huge strain upon relationships with your extended friends and family.  It's understandable, they get fed up asking you to meet up or go places with them to have you reply, "I can't I have to take X to a medical appointment", or "I can't X really isn't well enough for me to leave her" then of course sometimes it's simply "I can't, I'm just too tired and have so many chores to catch up with".  So invitations soon dwindle and stop, messages and phone calls soon drop off and before long you feel that you are no longer part of the family or friendship circle but now just an stranger with a familiar face who is looking in from the outside. A living memory to everyone within but just not quite included, just thrown a cursory nod every now and then.

I have found some exceptional friends on-line who I have met through the closed forums providing support and advice to me as a carer of children with chronic illness and the fact that both myself and The Dave are suffering from stress related illnesses too.  These wonderful people have helped me to feel connected to life outside our walls again and their love and support is unconditional, always forthcoming and more importantly they fully understand if you are absent for a while or don't reply for several days.  These friendships I cherish and who knows, one day we may get to meet in person, face to face - that would be wonderful.

Hopefully, one day our lives will become less insulated.  The girls will gain strength and be able to venture out  away from home, without our support and find their wings and fly out into the unknown, a life full of promise and adventure,  to explore, make new friendships and live life.  When this time comes I know both myself and Dave will be able to then re-acquaint ourselves with old friends should they welcome us to and strengthen our existing friendships further.  

~ Blessings ~

x~X~x

Strength

As a caregiver to my daughters I strive to be the best advocate I possibly can, try to remain positive about the future and guide them wherever possible whilst also keeping as much of the control over their lives in their hands and not mine.  This can be difficult as when they are really sick they need to pass over the control to me but I am mindful to pass it back when they are well enough to take it on board again.

To be a giver is something as a mother you do naturally for most part.

The giver of love - yes that's unconditional.

The giver of good vibes- now that can be a challenge on days when you just want to turn your face to the wall and cry with frustration and anger that this is happening to your children. Trying to be Zen when you feel despair and to throw out good vibes is something I am not always capable of doing but working at and hoping to be able to turn on and give out with practice in the future.

Giving strength can be draining and exhausting both emotionally and physically but I feel every carer does naturally try to do that at all times.

This past week has had many a bump in the road (more like gigantic potholes to be honest) and I have been struggling to know what course of action would be for the best. 

My two youngest daughters  continue to suffer many a bad day due to their ME, it causes horrific fatigue - post exertional malaise (PEM), described by http://www.cfids.org/  as being;

"Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head . . . someone crushing your ribcage, limbs giving out, mesh bag constricting head, ‘pingers’: those first small headaches that warn of bigger headaches, ‘back of head clamp’ headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head . . ."

This week they both started their home tuition, which has been a big step forward for them towards the road back into education.  Tasha is still very much in the acute phase which means she is only able to manage very short bite-size amounts of tuition before she is exhausted - literally 5 minutes is all she is managing initially.  For Tara, who has now improving very slowly, her initial tuition session is between 30-60 minutes. 

But with ME this seemingly small step to those on the outside is a mammoth one for them and inevitably causes a degree of PEM.   This will continue until their bodies adjust to the new activity and settles down.  This means any additional activity has to be minimised during this period of adjustment - it's a case of taking baby steps not big leaps.  

Education is a challenge too due to brain fog issues - which is a common symptom for ME sufferers.   It means that they can only start off doing very short stints of school work with their tutor and build up their tolerance very gradually, over a period of weeks or months, it is explained by Dr Myhil as;

• Poor short term memory
• Difficulty learning new things
• Poor mental stamina and concentration - there may be difficulty reading a book or following a film story or following a line of argument.
• Difficulty finding the right word.
• Thinking one word, but saying another.

The knock-on effect of this also means that they can't see as much of their friends, mess about on the computer, or use their energies in anything that will further drain their resources.  Instead they will need to take rest periods between activities and try to pace as best as they can.  In the past our efforts have failed and the education has had to be discontinued due to the severe PEM it caused and so this time round we are being cautious.

I stress this because ME is a serious and very disabling illness that is not taken seriously as yet by a vast swathe of the population who have been fed misinformation about it being a psychological attentions seeking illness of the lazy!!  Also, because it is an "invisible illness" where sufferers don't always outwardly look sick so they aren't always believed.   

As you can appreciate, when you live with this illness, seeing this reaction from others makes my blood boil, as why on earth would anyone, let alone a child, pretend to be ill and restrict their life so enormously, lose friends, miss out on education and so on?  It is a physiological illness and yes of course there are psychological implications which develop due to devastating impact it has on what was previously a healthy, active, normal life. 

We have utilised the advice and support of the TYMES (The Young ME Sufferers) Trust and would say for anyone with children diagnosed with ME that I can highly recommend you log onto the website.  It's full of advice, publications and support for your child and they also have a volunteer run helpline you can call (leave an answer-phone message if no-one answers, they do call back).  It is headed by Jane Colby (an ex-headteacher) who is a huge campaigner for children with ME.  http://www.tymestrust.org/

Another great source of information is Invest in ME  (http://www.investinme.org/), who are active in funding biomedical research into ME and also provide a wealth of information - they have produced a great leaflet that can be downloaded and printed off to pass on to raise awareness in the general public to help fight this ignorance about the illness. 

http://www.investinme.org/Documents/Education/IIMER%20Info%20leaflet.pdf

In it it defines that ..

ME is a severely debilitating neurological illness.  

It has distinct: onset; symptoms; causes; responses; and, long and short term prognoses. 

ME is an acquired illness with multi system involvement which is characterised by post encephalitic damage to the brain, brain stem and the Central Nervous System (CNS). 

Reaction to physical and mental activity and sensory input is unique to ME. 

Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours. 

Symptoms can range from mild to severe to life-threatening and can include: 

● Cardiac and Cardiovascular Problems 

● Cognitive Dysfunction 

● Gastro-intestinal Problems 

● Headaches 

● Hormonal Imbalance 

● Immunological Problems 

● Muscle Weakness and Intense Pain 

● Neurological Problems 

● Sleep Problem

So folks I suppose amongst all my ramblings what I am trying to share with you is that our life is tricky, there are many, many battles we have to face on a regular basis.  We take two steps forward and one step back - BUT it's got to be better than one step forward and two steps back - no?  

I am on a mission to share our experiences, raise awareness wherever possible and hope that if enough of us do, eventually we will gain the recognition and support so desperately needed. Never underestimate the power of many, eventually we will be heard.

So I take on board that life is hard for us as a family, some days so bleak it's hard to remember any joy or laughter ever existed within these walls - but then I shake myself down and remind myself that no matter how hard life is, how little light you can see from your end of the tunnel - there will be better days ahead, I believe vehemently that there will and that there will be treatments and with a uniform recognised biomedical approach for sufferers in the future.  

I hold onto the good and great days - for they will come again...

~ Blessings ~

x~X~x