Tuesday, 25 February 2014

Update

I thought it was about time I gave y'all an update on all things Mawer. My hubby, the lucky so and so, has jetted of to America for 10 days on a "work" (aka holiday) trip!  He has been in Florida and now currently in Miami enjoying the sunshine and all things car related you can push his way - I think you can safely say he is in petrol-head heaven! He's been watching drag racing, been to huge car shows and classic car museums before having a go at shooting in a range and I understand he has even been shopping too - just not quite sure what he has purchased, wondering, should I be worried? Just as long as he doesn't bring anything like this home as we have way too many American classic vans (which is his latest craze, prior to that it was drag racing cars) on the drive as it is!

Positive points from this week: - 
  • We have now received a letter with a date for Tasha to see the specialist Occupational Therapist for rehabilitation therapy assessment for the 12th March - the OT we were referred to comes with great recommendations from other ME sufferers - so we are hoping and crossing our fingers that she can help Tasha.
  • Tasha has been prescribed ranitidine twice a day to try and help with stomach pains and cramps when eating and is now able to eat a little more than before - although meat is still difficult for her, so mostly fish and veggie gluten free diet.
  • After having to cancel our previous appointment as the girls were just not well enough to travel we are also off to the osteopath this afternoon for both girls to have a much needed manipulation and lymph drainage treatment, which I know makes them feel rotten the next day but the day after that usually see's some relief from the pain.

So, quick updates on the girls....
Tara;
Is now less severe than Tasha and we feel coming out of the acute stage which is allowing her to be able to have a small social life with strict pacing. She can attend two, one hourly, home tuition sessions a week and has now managed to gain a little more control over her M.E. and can recognise signs of impeding relapse and reign in her activity to try and minimise the extent of it. However, she is still severely limited and only sees her peer group about once a fortnight and has to be exceptionally careful on how she manages her energy levels prior and post social contact.  We still struggle with her weight due to gut issues and having difficulty absorbing fat, but with modifying her diet, she is slowly gaining weight and with it some strength.  However, over the past week she has suffered a relapse and has mostly been in bed recovering and has been highly miffed at the timing as it was half-term and she wasn't well enough to hang out with her friends or go anywhere at all.  BUT *hopes not to be tempting fate* it looks as if she is climbing out of the crash and getting a little more energy - so hope next week will be a much better and happier week for her.

 Tasha;
Sadly, is becoming more severe by the day.  The smallest exertion has a huge physical impact - she can barely come up or down the stairs (even enquiring if we could get a stair lift installed to help her on her worst days).  She has also been newly diagnosed with arthralgia & chronic gastritis on top of her ME and blood pressure issues which is further debilitating her.  We are awaiting an appointment for abdominal scans to see if it is "just" the ME causing the gastritis or something more.  The new medication is helping with the pain but not the other digestive issues - so we need to look further into that.  She is also suffering more frequently from intermittent paralysis and heart palpitations which if continues will need re-examining too. As a parent it is heartbreaking to see your child suffer so much each and every day and be helpless to alleviate their suffering.

My eldest daughter, Keisha;
Is doing well at College, but has recently, due to having her medication changed, suffered from episodes of anxiety and migraines - hopefully they will ease as her body adjusts to the new medication.  She was, however, well enough over the half-term break to go to a gig at Rock City and thoroughly enjoyed herself - but is now back to the books and studying ready for her exams.

Over the past week she felt awful seeing how much her sisters are suffering and felt compelled to write a blog about how she feels, sitting on the sidelines and observing her sick sisters - she writes;

"I love my sisters so, so much and it kills me when they're in a bad phase. ME has become such a significant part of my life so in some ways I'm used to it, I know that emotional and mental stress has a physical impact on both Tasha and Tara, so I have to be careful not to stress them out by having people over or causing a fuss, however in a lot of ways ME has taken away two of my best friends. 

Tasha is only a year younger than me, and before she got ME we would always go out together, we'd go to gigs and have fun and we wouldn't have a care in the world, but now I can only take her out for a few hours in her wheelchair on a good day if my mum drops us off and picks us up from wherever we're going. Tara's had ME from a younger age, so she manages to cope, but Tasha had experienced a good social life with a huge circle of friends and she's always been able to do anything, so getting sick and becoming practically bed-bound has been really tough for her. I have so much respect for both of them. They've been so strong through everything, and they find ways to stay positive despite all the shit they have to go through, they don't let their ME stop them from having dreams and ambitions and fun.They always put on a brave face through everything, and they are two of my biggest role models in life. 


Tara especially has had to grow up so fast, and although she's not been in education for like 4 years, in some ways she's smarter than people my age. She's always so thoughtful and she's the first person I go to for comfort or advice, she's hilarious and witty and she's definitely smarter than a lot of people her age in the way she just gets stuff, Tara has an old soul in a young body due to living with a debilitating chronic life altering illness, creating advanced maturity in her perception of the world around her. 


Tasha is one of the strongest people I know. Before she got ME she was an aspiring hairdresser, she was getting high grades in school and she had all the doors open for her. Now her original career choice is no longer a possibility, but she never lets it get her down. She puts her passion into her art, she makes the most of her talents and she's a brilliant photographer/blogger/tattoo artist. I admire her strength and determination so much, both of my sisters are amazing."


Lastly what about me?  Well, my aches and pains are still there and the fatigue is still a problem, BUT my blood pressure is now down to a healthy level which means no medication required.  PLUS myself and hubby have been attending a weight loss club over the past few weeks as we are both horrific foodies and when we get together can be terrible!  So the knowledge of having to step up onto the scales in a group every week is keeping us on the straight and narrow (mostly) except for Monday evenings (weigh day) when you "treat" yourself and reward yourself for a weeks hard work - but shhhhhh, don't tell anyone.  So far I have lost 2lb shy of a stone and hubby, the jammy git, has lost just over a stone!

Now - my mission for the next few weeks is to drum up support for M.E. and try to get as many people on board to organise fundraisers for Invest in ME in the run up to ME awareness week in May - if you aren't sure about what M.E. is then you can find out all about it here.

Also, if you belong to a company, workplace, school or social club that likes to support a charity annually then why not suggest Invest in ME and look at all these fundraising ideas in the blog I wrote here, which would help raise money to fund biomedical research to find treatments for sufferers and a hope to a healthier future.

Or you could simply make a small donation to my Walk for M.E. 2014 sponsored walk justgiving page here - we will be going out, as a family, Tasha in the wheelchair and Tara walking as far as she can before sitting out whilst we walk the rest of the way.

If not a donation perhaps you could just share the link with your friends and family instead - we don't mind which - anything that may help raise awareness and/or funds for research would help make a difference.

x~X~x


Monday, 24 February 2014

Looking for a Charity to adopt?

I know many social clubs or company's like to support a different charity each year and wonder - is your workplace, local social club or school looking for a charity to support?

If so, I urge you to consider supporting Invest in ME and helping us to raise money to fund research into causes and treatments, whilst also raising awareness for all the adults and children currently suffering from this illness.

For further information about the Charity please take a look at these websites where you can also contact them for further information if you require it;

and their support Charity 

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There are so many different ways you can raise funds and get involved, here are just a few;


Help us Perform Biomedical Research into ME
Take a slot in the Matrix to raise funds for the UK Rituximab Trial.
This is inspired by a £1000 donation to the UK Rituximab Treatment Trial JustGiving page and the Let's Do It for ME team have come up with an idea to help raise awareness and funds for this important biomedical research into understanding and finding effective treatments for ME.  The aim of the Matrix project is to help raise as much as possible of the £350,000 required to fund this trial by inviting 100 pledges to raise or donate £1000 each.

Invest in ME will coordinate the fundraising for this trial.

The charity has already invited other charities and organisations to support in funding this trial.  Everyone is invited to participate.

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Invest in Me will help promote your fundraising event if you contact them;

Alternatively you could raise funds for free; 

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You can download sponsorship forms for any of your events here
AND 
There are badges, mugs, t-shirts, wrist bands and bracelets, car bumper stickers, information videos and various posters available.

To enquire about receiving printed copies of any Invest in M.E.'s leaflets (or any other information for your fundraiser) contact them - click here

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Whatever you can do - no matter how big or small, will help us to make a difference.

Thank you

x~X~x

Saturday, 22 February 2014

Emotional

Today when the postman delivered our mail I discovered a brown padded envelope addressed to me.  I wasn't expecting anything and was confused as to what it could be - had I ordered something and then forgotten about it?

When I opened the envelope what I found inside reduced me to tears, it was absolutely unexpected and emotionally overwhelming...something purchased as a surprise for me from my second born daughter, Tasha, who as you may know from previous blogs, suffers from severe M.E., she tries to remain upbeat and positive despite also suffering with Orthostatic Intolerance, Hypermobility, Asthma, Anxiety, Depression, Chronic Non-Coeliac Sensitivity, Chronic Arthralgia & Chronic Gastritis - which I think you will agree is quite enough for anyone, let alone a 15 year old to deal with!

Anyway - what did she send me, I hear you ask? This is what I discovered as I opened the envelope...
First was the note;
 Then the bag, which when opened revealed a pendant necklace, the pendant being a key with the words "bravery" inscribed onto it;
Also, in the bag with the key was a card which read;

I think you can now understand why I became so emotional.  My daughter is suffering badly right now and yet she was thinking about me and how she could show me how much she loved me.

I love all my girls unconditionally, wholeheartedly with every particle of my being. I know they understand that I don't want or expect them to do anything in return.  All I ask is that they love and respect themselves and don't feel the need to be anything other than who they are, regardless of peer pressure and the media.

When I opened this thoughtful and unexpected gift it touched me deeply and is the reason why this morning I am feeling exceptionally emotional!

I have had a good old fashioned sob, it has to be said that I am a very expressive person, I cry when I am happy and I cry when I am sad - but you can never fail to know how I am feeling, that's for sure.

All I know is that I shall treasure and wear this bravery key with pride, each and every day - then one day, when the time is right, I will pass it on.
Tasha thank you darling

x~X~x



Thursday, 20 February 2014

New ME, CFS, FMS Blog Awards, My Acceptance & Nominations

Thank you to Sally  http://sallyjustme.blogspot.co.uk/ for my ME CFS FMS Blog Award - I am new to blogging but hope that opening up about our journey with ME with it's trials and tribulations along the way will help raise the awareness and the visibility of sufferers with ME.  I feel incredibly  humbled and touched to receive this award and so accept it gratefully and with immense pride. 

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Crazy Purple Mama Blogspot: 

"Well who wouldn't warm to the name of this blog?  And the warmth of the name is further reflected in the writing.  Here you'll find a mother coping with two daughters diagnosed with ME.  Yet the blog has an upbeat and quirky feel, that I can readily relate to.  Tanya writes a poignant post here about When it All Changed.  I think we all have a photo like the one featured here...."

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My Nominations are:

Diary of a Part Time Person: 

http://jetspero.wordpress.com

Jet came to my attention after my daughter received a wonderful letter to lift her spirits via a fabulous facebook group called the The Tribe Of Hope (To support Severe ME Sufferers), after that we became facebook friends and I have found myself constantly surprised and inspired by everything Jet does.  From head shaving, Walking for ME, blogging to raise awareness and being a fabulous pen pal to severe sufferers without asking for anything in return and all the while suffering too.  Hats off - full of admiration - check out Jets latest ME and Resting

Mama Chill and ME

http://mamachillandme.blogspot.co.uk/

The fabulous Mama Chill is a sufferer of ME and Fibro who not only writes heart warming, humorous and honest blogs about her life with these illnesses in order to raise awareness but is also crazily multi-talented, not only has she written two songs to raise funds for Invest in ME -  ME Awareness singles/videos but has also gone further and designed a range of merchandise to also raise funds for Invest in ME  ME awareness merchandise (I have a Running on Empty Hoody and it is fantastic quality, warm, cosy and just brilliant!)

 

Gone in a Flash

http://natashamawer.blogspot.co.uk

This is a new blog by a young 15 year old ME sufferer who writes when she is well enough and posts about her life, including her feelings and experiences living with ME, anxiety and depression in these two posts; Life Sucks Sometimes & Anxiety.  She is also my daughter and I know she feels that she isn't able to make any impact on peoples perceptions of ME sufferers but in actual fact she does and has.  I am hoping receiving this award will help her to realise this.  She is currently working on a video, along with her sister (who also has ME) about how the illness affects the lives of teenager sufferers to release during Mays ME Awareness Week.  All I can say is I am immensely proud of her!

M.E. myself and I: 

http://lifeintheslowlanewithme.blogspot.co.uk/

As a parent of children with ME this blog really captures me - it is beautifully written, expressive and honest.  Anna started the blog in October 2012 to help her family understand her illness and to offload how she felt.  I feel she most definitely qualifies for this award for raising awareness and the reality of living with this illness.  This particular blog really grabbed me, as it is a sentiment echoed by my daughters The Fear.

and my final nomination for this award is

My A-Z of M.E.

http://roslemarchand.blogspot.co.uk/

This blog is full of useful information and wonderful poetry.  Ros Lemarchand has written a book called called `My A-Z of M.E.` (Myalgic Encephalomyelitis) to raise awareness which can be bought from Amazon (with donations from purchase going to Invest in ME), the links of how to purchase it can be found here Purchase information  I shall use a direct quote which sums up this blog "Through my poems I want to increase the level of understanding and to help others to feel less alone with this illness."A wonderfully inspiring woman, thank you French femme.

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ME & CFS & FMS BLOGGER AWARDS:

Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS)  and/or Fibromyalgia (FMS).

The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.

It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves.  No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.

HOW IT WORKS:

1,   On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award.  The page will also include this set of instructions and the two award images.

2. Please note, you do not need accept the award.  The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.

3. To claim your award:

a) Create a new post on your blog, in which you thank the individual who gave you the award  (remember to include a link back to their blog).  You can then copy the images to your blog post and/or side bar as you wish.

You may need to click on the image and download it, before putting it into your own post.

Below is the code for adding the small image as a link in your blog side bar if you wish to do so:

<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>

b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special.  A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.

c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )

d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs.  The comment could simply read:

"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD.  Please visit <insert link to the post you have just created> to collect your Award"

3. Hopefully these awards will spread far and wide.  I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.co.uk/2014/02/my-nominations-for-first-me-cfs-fms.html
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.

THANK YOU ALL FOR PARTICIPATING.


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Thank you for reading
x~X~x


Naughty ~ But Nice

Which way do you swing?  White Chocolate or Dark?
My girls have always previously been fans of the traditional chewy plain chocolate brownies until I discover the white and gluten free versions. Now these are the only two recipes I am requested to make! The dark chocolate gluten free brownies with white chocolate chips are beautifully moist and luxurious - you would have no idea they were gluten free, or the White Chocolate Brownies with milk and white chocolate chips which are more dense, moist and have a slightly more cake like texture. 

I shared the gluten free brownie recipe with you in my previous recipe blog, but if you fancy making them just click on the link and it will take you to the recipe (scroll down and it's halfway down the blog)  Gluten Free Recipe

Today I  thought I would share the White Chocolate Brownie Recipe with you - as it would be great with mini eggs on top for Easter!

White Chocolate Brownies
  • 200g White Chocolate (chopped)
  • 200g White Chocolate (melted)
  • 4 large eggs
  • 230g Butter (softened)
  • 230g Caster Sugar
  • 130g Plain Flour
  • 1 teaspoon Vanilla Extract
Method
  1. Preheat the oven to Gas Mark 5 or 180C.
  2. Melt the 200g chocolate in a bowl over a pan of hot water, put to the side to cool slightly.
  3. Mix the butter and the sugar until they are creamy.
  4. Add the eggs, vanilla extract and the melted chocolate to the butter and sugar mixture.
  5. Slowly stir in the flour and then add the 200g white chocolate chips (or a mix of white and milk chocolate chips if you prefer).
  6. Pour the batter into a tin lined with baking parchment (NOTE: these brownies do not rise much at all - so pour the batter as thick as you would like the brownies to be once cooked).
  7. Bake in the oven for 30 minutes.
  8. Leave to cool until completely cold in the tin.
  9. Take out of tin and remove the baking parchment and place on clean piece of baking parchment.
  10. Melt the milk or plain chocolate (depends on your taste) in a bowl over hot water.
  11. Pour the chocolate into a piping back (I use a freezer bag and cut the tip to use as a piping bag).
  12. Drizzle chocolate over the top of the brownies in any design you fancy.
  13. Leave until the chocolate has set before cutting into squares and devouring!!
Enjoy 
x~X~x

Saturday, 15 February 2014

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.
x~X~x




Sunday, 9 February 2014

When it all Changed

I look back at this picture and it brings a lump to my throat along with mixed emotions of joy and great sadness.  It was taken in May 2010 by Dave - we had just 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 at this photograph 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 Childrens 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 focussed 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.

I feel pictures say for more than a thousand words and this picture shows the transformation from healthy and active to sick and struggling ....



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 wonderfully understanding boyfriend who comes over and sits with her and 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.

This is my lovely girl at the beginning of 2012 and then how she is now....


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…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 We have found comfort from supporting Invest in ME as they are actively pursuing research and searching for answers and treatments for sufferers.  If you want to support them you can purchase a wristband from :
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