Slowing down for Christmas

Website, blogs, school runs, Christmas preparations, trying new recipes, poorly kids, poorly parents ... It's getting a little bit much and boy, am I feeling it! I stumbled across this quote the other day and it was just what i needed:

“The average woman today, I believe, would do well to appraise her interests, evaluate the activities in which she is engaged, and then take steps to simplify her life, putting things of first importance first, placing emphasis where the rewards will be greatest and most enduring, and ridding herself of the less rewarding activities.” Belle S. Spafford

I think we can all, healthy and sick alike, do with simplifying our lives a bit, especially around Christmas time. There's no need for hustle and bustle, we'll enjoy it much more if we step back and allow ourselves to soak in what's happening, rather than whizzing around getting this and that done and missing the joy and peace that abound when we think of the real reasons we are celebrating. 

Check out my website: www.mecuperate.co.uk

Building palaces

Today is remembrance day. I never fail to be touched and humbled during the couple of minutes we spend in silence remembering the fallen and sacrifice they made for our freedom. The older I get, the more this means to me. I feel truly grateful for the freedom they gave their lives for.

Thinking of the horrors of war led me to think of the people i have heard of or spoken to this past year who seem to be going through the refiners fire. Some of their trials appear incomprehensible and my heart aches for them. At times I wondered was it really necessary?
I'd been pondering the purpose of this life for a while. Then I stumbled on a friends wall post on Facebook and some inspired person had quoted this from CS Lewis:

Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that these jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of - throwing out a new wing here, putting on an extra floor there, running up towers, making court yards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself. 

There it was, in words I could understand and make sense of. We are being made into palaces. Sometimes it feels as though we'd be content with a cottage if only the hard times would stop, but in those times we need to hold on to the picture of a palace and know we will get there!




My website : www.mecuperate.co.uk

Accomplishing goals: a new website!

A couple of posts ago I wrote about setting goals. I told you I would keep you posted on how they were going, and I'm pleased to announce I've accomplished one! Since I've suffered with ME I've had to rethink the idea of setting goals and very much had to follow Anne Shirley's advice in Anne of Green Gables. She says 'my future seemed to stretch out before me like a straight road... Now there is a bend in it. I don't know what lies around the bend, but I'm going to believe that the best does.' Whenever I set a physical goal I don't know if I'll be able to accomplish it. ME is known for putting bends in roads in the form of relapses, or dips in the condition. It's not easy to find beauty in these bends, but even though at times I don't want to believe it, I know that these bends do happen for a reason.
So, with this in mind, I feel even more excited that I've been able to accomplish my goal of setting up a website to help those, like me, who suffer with ME/CFS and fibromyalgia. I did start with the lofty idea of developing it myself, but that was too taxing for my brain fogged, mummy brain. Instead, knights in shining armour, called Netheads (www.net-heads.co.uk) , came to my rescue and helped my dreams come to life.

My hope for my website is that it will provide an online community where people can find advice and support, a place to share recipes to help us eat the right foods to fuel our bodies, and a place we can feel inspired and share our talents. We've all got some talents or hobbies. Nowadays it might take us a lot longer to accomplish them than before, but I think it's so important to our self worth to keep on with them. There's also a forum for carers to find support too.

Please take a look at my site and join us: www.mecuperate.co.uk

Preparing for the season.

The nature of the beast with an ME blogger is only being able to write posts when the going is good. Now the cold weather is hitting I'm having to pool my energies into the most important tasks, which, as ever, are my two munchkins. Saving some for handsome man of course.

I think this winter will be the test to see if I've really learnt anything this past year. The cold weather hits me like a ton of bricks and I'm not afraid to say that I hate it. My darling baby-turned-toddler is still intolerant, he still sleeps horrendously and he still suffers from reflux. In the summer weeks, when I felt at my best, it was easy to cope. However, I'm not going into this winter blind, like last year, so now when things seem too much, I know what to do to be able to cope.

I need to ACCEPT that this is what I have to experience. I need to ASK for help when needed. I need to REMEMBER that the things that made me happy with less pain and fatigue, can still make me happy with more pain and fatigue. I need to TAKE IT EASY and cut back on the activity I increased in the warmer months. And most of all, I need to remember that GOD LOVES ME, it's easy to forget when things get a bit harder, but there's no better comfort than knowing that you've got one friend who's on your side!

All that said, I still love winter time, I love the smell in the air, I love the crisp leaves under foot, I love snuggling under blankets, I love my birthday, Halloween, bonfire night and Christmas. Tis a great season ... If only it wasn't so cold!



My website: www.mecuperate.co.uk

Setting goals

We had a lovely road trip last week. As we travelled for miles with our kids asleep in the back I wondered how we had come from a screaming baby who couldn't eat anything, to a fully weaned toddler, who is mostly happy as long as we stick to the right foods. Without realising it our little baby is growing up and we are loving the boy he's turning out to be. Sometimes I moan about still having to feed him off to sleep, but when I think of all those months we had to vigorously pace the floor rocking him to sleep for hours, I think of how much easier it is now and am grateful!

Our trip left us feeling rejuvenated and revigorated. We felt like coming home was a fresh start, a new beginning. It was the perfect time to set goals. There are a few things about my life that I'm not content with and want to change, and I'm a firm believer that we are masters of our own destinies. If you want to do something or be somebody you've got to put in the effort! I've made my list of the things I want to change/improve/accomplish and it's my job now to do it and keep motivated.

Now motivation usually isn't a problem for me if I deem the task in hand important or I really want to do it. My problems arise when I come across a stumbling block and then I struggle to think of solutions. Fortunately, as much as we are masters of our own destinies and need to do the work, if we ask we can receive divine guidance. If we set worthy goals then we will be entitled to guidance to find the solutions we are looking for.

Knowing this and putting it into practise  I should be successful in my endeavours ... I'll keep you posted!

Waiting for the good things

Last week I had my usual peruse on facebook and saw all the photos and status' of people going on holiday, watching the Olympics, having nights out. Not long after I found thoughts creeping in, slowly and subtly making me feel hard done by, trapped by my body and baby, and generally dissatisfied with life. I longed for a hot holiday, time to go out with my friends and husband without any kids, the ability to go on walks in the countryside... A bigger house on a quiet estate, a private chef, a cleaner. I think we all can empathise with the 'grass is greener' feeling.
I'd been doing so well with coping with it all, that I wondered why I couldn't shake off these thoughts now. And then I saw a book that a good friend had dropped off previously, which I hadn't had chance to read. It's titled 'When your prayers seem unanswered' by S. Michael Wilcox. Whilst the boys napped for a couple of hours I read the whole book, it's not too long, and it put everything back in perspective. The author explains that the Lord comes in His time, He can see when we are ready. I definitely recommend the book. Through reading it I remembered that this life isn't all there is. Essentially, it's a test. We're here to learn and grow and become the people that we need to be to live HAPPILY and with JOY and PEACE where we will live with our loved ones FOREVER. A moments hardship for an eternity of happiness. Granted, it doesn't feel like a moment, but I need to remember it is. We need to endure and endure well and learn the lessons we've been asked to learn. It's possible to do this only if we really do believe that good things will come. And they will, an eternity of good things. Good things also happen in this life, help will come, hard times will pass. We will have become better people for having been through them ... If we choose to be.

Remaining happy

After learning all I've learned over this past year I wondered why being happy still required effort. My little guy has had a few bad nights the last few weeks and these past few days have seen him be his grumpiest yet, just as we've trialled rice with him. It's easy to be happy when things are running smoothly but We are told that knowing what we know we should be a happy, joyful people in the midst of trials. .
So, I went back to the scriptures, back to the conference talks and prayed for guidance as I tried to find the answers of how to be truly happy, not dependant on circumstances.
I don't want you to think I'm really struggling. For the majority of the day I'm happy and smiling, but I still get easily upset when my son reacts to foods, or if my body makes life even more difficult that day. I shouldn't though, if I understand and apply the gospel properly.
The first lesson I learned was to be more GRATEFUL. It's surprising how much you realise your blessed with when you take note of everything you've been grateful for that day. This is a practise I highly recommend, if you want proof you're not doing this alone.
Secondly, ultimately the Lord knows best. He knows what will get you back to Him, so trust Him. When prayers are seemingly unanswered, believe there is a better reason for why.

Keeping the faith

I was asked to give a talk last Sunday, I said yes, but i really wanted to say no. Public speaking is definitely not in my comfort zone! Then you've got all the CFS worries - can I stand there for that length of time with all those nerves? How much pain am I going to feel after it?
I did it though, I had to, the subject was faith in adversity and that is what I have been trying to learn for this past year. Everything I said in my talk is what I've had to learn, the hard way, but it's true and it works.
So, here it is, my talk and the culmination of everything I've learned (and still learning) this past year.

Some challenges we face hit us hard and the burdens seem too heavy to bear. At times like this it can seem like we pray but feel no guidance or comfort and it can lead us to wonder where God is. The prophet Joseph smith had spent several dark months in liberty jail when In D&C 121 we read that he prayed 'O God, where art thou? And where is the pavilion that covereth thy hiding place?' 
The Lord gave Joseph a response that we can all apply in our lives 
"My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;
 "And then, if thou endure it well, God shall exalt thee on high." 
In our worldly time frames our afflictions don't seem like a small moment, some feel like they will last forever, but God has promised us they will end. The hard part is holding on to our faith in God and in his promises, when in the midst of trials. 

Accepting the challenge is a huge component in helping us to get through it. There is no benefit that comes through getting angry with your situation or wallowing in despair. These serve only to make the tough times harder and yourself and your family more miserable. When we agreed and even rejoiced to come down to earth we knew that it was a time of testing, and that we would go through good times and bad times.  Accept the bad times for what they are - Opportunities to learn the traits that will keep us strong in our times of trial. These are the traits that will enable us to live in peace, joy and harmony in the next life. Henry B Eyring said 'the disciple who accepts a trial as an invitation to grow and therefore qualify for eternal life can find peace in the midst of the struggle'. If we accept these opportunities for growth, our challenges can refine us into being the best people we can be. 

Once we have accepted that this is our life for the moment we can humble ourselves and open our hearts to the Spirit. Richard G Scott says 'yielding to emotions such as anger or hurt or defensiveness will drive away the Holy Ghost...' we need to go to the Lord in prayer humbly, quietly, so that His spirit can speak to us and we can feel it.' More often than not, the Spirit whispers to our hearts, or speaks peace to our souls. We need to free ourselves of the negative emotions that might hinder us from feeling these promptings and humbly pray for the guidance to help us through these hard times. 
Our prayers will be answered. 
When the Saviour atoned for us, he did not just atone for our sins, he also went through our sicknesses and our sorrows. In alma 7:11-12 it says  'And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
 12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.' He KNOWS how to succor us and He will if we ask Him. 
We need to give up our pains and sorrows and hand them over to the Lord. As the psalm says  "Cast thy burden upon the Lord, and he shall sustain thee" . In turn, going through these experiences will enable us to help others when they go through their own trials. And serving others not only strengthens them but ourselves too, as president eyring states  'It is serving God and others persistently with full heart and soul that turns testimony of truth into unbreakable spiritual strength.'

During the times when our faith and morale are low and we struggle to put one foot in front of the other, it is essential that we persevere in our prayers, our scripture study, partaking of the sacrament, attending the temple and other commandments. By keeping the commandments we uphold our end of the covenants we have made with God and therefore, He is bound to bless us, as elder d Todd christoferson explains ' In these divine agreements, God binds Himself to sustain, sanctify, and exalt us.'' 

A friend sent me a link to a talk recently by Joseph B Wirthlin called 'come what may and love it'. This sentence changed my attitude and helped me put my circumstances into perspective. Elder Wirthlin suggested  "The next time you're tempted to groan, you might try to laugh instead. It will extend your life and make the lives of all those around you more enjoyable". My husband is great at applying this principle and I can't remember a day I've not laughed despite feeling my burdens were too heavy to bear at times. Richard G Scott explains that  A good sense of humour is an escape valve for the pressures of life and can help revelation. Both are things we need in order to remain faithful in adversity. 

Most importantly, in order to keep the faith, we need to endure to the end. We won't be perfect in applying these principles and remaining strong throughout our trials. That's ok, we just need to pick ourselves up and try again. It will feel hard to do, but each time we do it will feel easier. Elder Robert d hales testified that if we are obedient and diligent in doing what the Lord asks  'then our prayers will be answered, our problems will diminish, our fears will dissipate, light will come upon us, the darkness of despair will be dispersed, and we will be close to the Lord and feel of His love and of the comfort of the Holy Ghost.'
What a comfort this is. 

Never forget that God is there for you, He has not abandoned you. President Eyring says 'Because you are so valuable, some of your trials may be severe. You need never be discouraged or afraid. The way through difficulties has always been prepared for you, and you will find it if you exercise faith.' It requires faith and courage to start each day afresh and try again,  but we can and we must. These times will not last forever, and Joseph B Wirthlin reminds us that 'The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude.' 

Coping with ME/CFS: 6 tips that help me

I've heard of three people this week who have been diagnosed with M.E and spoke to another who has it. It's so sad how common this debilitating condition is. I can't cook them meals, or clean their houses like I would like to do to help them. But what I can do is share what I find has helped me manage this condition and have some sort of life. They are not cures (I believe I can be cured, but what cures one might not work for another, plus it takes time and money - time we've all got, money is a different story)but ways of coping.

1) PACING - I was so annoyed with the NHS for what I thought was 'fobbing me off' when they told me how to pace myself and said that I'd finished the treatment. Is that it? I thought. However, I firmly believe this technique is what has kept me from regressing. The level of the activity that you pace is dependant on your energy levels. The idea is to only do half of what you think you can do, and to make sure you rest afterwards. I know how frustrating it can be when you can't accomplish a task in one sitting anymore, but pacing yourself prevents those awful consequences that come every time you burn all the energy you have.

2) TEST YOUR LIMITS - this sounds Like an oxymoron after the first point, but I do think it's important on some occasions to push yourself a little to see if you have made any improvements. If you don't try you'll never know.

3) KEEP CALM - its not just physical activity that bring on my symptoms, they also worsen when I feel stressed or angry or upset. So, as hard as it can be sometimes I count to ten, take a deep breath and calm myself.

4) EAT HEALTHILY - there are specific restrictive diets that I have found work, but they are pretty hard to stick to. For the purpose of this post, I'm talking about eating your five a day, cutting down on refined foods and most importantly of all - REDUCE YOUR SUGAR intake. The crashes after a sugar fix are not what your chronic fatigued body needs.

5) PROPER REST - I mean putting down your book, switching off your tv and closing your eyes, taking deep breaths and clearing your mind. If you can't switch off, then change your thoughts, remember what it was like to feel well. Remind your brain and your body how it feels to be well. Let yourself rejuvenate and repair.

6) SAY NO AND ACCEPT HELP - everyone I've spoken to who suffers with ME/CFS used to be active, focused, busy people. The kind of people who do the helping, yet now we are the ones that need help. Saying no or accepting help does not come easy to us, but it is so essential. It's also essential to ASK for help too. 4 years on and I'm still learning how to do these things!

This list isn't exhaustive, I'm sure there's things that I've missed, but these are the important ones for me. Feel free to add your comment on what has helped you :)

Healing through the Atonement

I've been a tad neglectful of my blog lately. There's plenty I could have written, but nothing seemed right. This past month has been a time of reflection and relearning. As I handed my trials over to the Lord I was advised to study the Saviour and in particular his Atonement. By doing this I have learned, and am still very much learning, the role that the Atonement plays in helping me through the illnesses of myself and my baby.

Alma 7:11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.

Christ knows exactly what my baby is going through and what I am going through because He has experienced it through the Atonement. He bore my pains and sicknesses. Throughout this period I have felt guided and I know that where we are lacking in medical help we are getting heavenly help. It's up to me now to follow that guidance. I do all I can for my baby, and I know that The Lord is doing the rest to heal him. I need to heed the promptings and get myself better. Diet plays a big part and I've been prompted more and more to eat healthier, not just for me but for my family. I've been ignoring the promptings, but the more I study the gospel the stronger the promptings are becoming.
It's been relieving to hand my worries over and I believe if I follow the promptings that I receive we will return to health. As it says in Matthew 21:22 And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.

An insight into ME recovery

Today is ME awareness day and as a blogger with ME I feel an obligation to blog today. I feel I'm in a fortunate place as I'm on the slow road to recovery from being bed bound. However, I want to explain why even when things start to get better recovery brings its own challenges.
A few weeks back I was asked if I felt like I still had ME or if I was just a tired mum now. The question took me back a bit and I didn't know how to answer. I didn't give a good answer back, I never can. I get so muddled when I speak sometimes that I end up saying everything because I can't think of the right words. I could understand why he asked the question, on the outside I must look like a tired mum. What people don't know is that to look that way I am pushing through the pain and the heaviness and the nausea till I can get the boys down for their nap and down to bed. Nap time is an essential part of my day to enable me to function till the kids go to bed.
When you look ok on the outside and can do some things, it's easy for people to place expectations on you. 'if you can do that then why can't you do this?' The answer? Because I have a certain level of energy to use throughout the day. I have to prioritise what I spend that energy on. Some days I get my priorities right, sometimes I don't, but if I've not done something it's because I've not had the energy to do it. I'm not lazy. I've given up feeling guilty over how I spend my energy, except for when it comes to my boys.
Because I only have a certain amount of energy to spend a rarely have a day where my life doesn't feel like chaos. The house gets trashed by my lovely kids, housework is a never ending job, food always needs to be prepared. I'm lucky in that I have a good support network and a hard working husband otherwise the house would fall into utter ruin. I try to do some housework, but as my husband says, what takes him 5 mins can take me 3 hours.
Sometimes, I get bored of living my life in the house and I want to go out. I can do the odd trip out now, I can handle bits of walking. But these days don't come without their punishment. A trip out now means I will pay the price in increased nausea, pain, stiffness and heaviness for the next week. And on some rare occasions I have pushed myself so much that my energy levels haven't recovered to what they were before, because, with children it's impossible to rest sufficiently.
Being partly well brings more responsibility which means I have more to remember. What this actually means is that I have more to forget. No amount of lists or alarms are enough to help me remember. I can forget I heard an alarm one minute after hearing it.

I'm grateful I've been fortunate enough to make some recovery though. For three years I was unable to sit up without feeling pain, dizziness, nausea. I've come a long way since then, and for that, I am truly thankful!

Bad foodaholic

I really love bad food. By bad food I mean the food that tastes the best and requires little to no effort to prepare and I particularly love the sweet bad food. The problem I have is that I believe it is bad food. I believe we are what we eat and that these kinds of food are bad for my mental and physical health. And so I face an inner battle between loving these foods, but knowing they are not good for me. I don't think these foods are bad for an occasional treat if you are well and healthy, but we are far from well and healthy.
I just can't get the motivation or will power to eat as well as I should. I stick to a restricted diet because if I didn't I would cause my son pain, but apart from withholding the foods he's intolerant to I eat pretty badly.
I have been pondering over why I find it so hard to eat as healthy as I need to, despite believing absolutely that it's right. It's come down to these reasons:
1) My mind set. Right now I look on a healthy diet as restrictive and I long for the day I can eat cake, pizza, chocolate and burgers again. If we were healthy now I would eat these things everyday, my mindset is still the same as it ever has been.
2) The effort. Eating healthily requires forward planning, researching, lots of preparation and practise in making all these completely new dishes. I have barely enough energy to look after myself and the two boys, let alone planning and preparing meals that I know nothing about.
Which leads me onto the final reason
3) Lack of knowledge. I have no idea about what foods do and what they are good for. There is so much to learn about each food that I have found through my research for baby, and the hours I have spent has shown me that there is far too much for my poor baby/CFS brain to take in.

I have eaten some lovely healthy foods, I have been shown that it can be easy if you know how, I have even been given a kick start. However, in order for me to be successful then all three reasons need to be changed. I'm hoping that recognising my failings will enable me to know what I'm working with to make the necessary changes.
Why oh why does bad food have to taste so good!

Trials: time to give it up

I'm on a journey to get my baby better. I'm following a path, except I can't see which way to go, I'm being guided. Some parts of my journey have been straight forward and I've been able to see clearly the route I was to take. Other parts have been like shortcuts that have been rough to go through, but enabled me to go the right way more quickly than another route.
Now I find myself stuck, as if I've encountered dense fog that blocks my vision. I know I'm on the right path, but I don't know what to do next.
I misinterpreted this as silence, but after a conversation with my wise sister yesterday I now recognise that i need to wait. I have to carry on doing what I know to be right with my baby ... And then wait.
I don't know what I'm waiting for, but I don't need to know. I just need to know that this the right thing to do.

As you could probably guess from my last post I had reached a point where I can go no further. There was nothing else I could do. I saw my Perrin practitioner (for my health). Whilst she gave me a much needed massage I poured out my worries and cried all my tears out, she told me that I had to 'give it up'. Don't do any more research, and focus that attention on myself. She also recommended a nutritionist who specialises in these conditions and said I should let someone who knows take over. It all made a lot of sense to me, yet I didn't feel excited as I usually do when I think I've found a solution. I mulled over it for a day or so, and couldn't fathom why I didn't feel anything. I still don't know why. I don't feel like this is the next step for us, although I would love to 'give it up' to someone who knows.

I am going to 'give it up' though. I'm going to stop researching and trying to find solutions, for now. I'm going to carry on the low allergen diet for myself and baby. I'm going to continue giving him a low dose of omeprazole. I shall continue to ease his pain and help him sleep in anyway that is possible. But I will no longer spend hours researching and stressing about what I can do. I will wait to see what my next step is. I will 'give it up' to someone who knows .. The Lord.

Struggling to put the puzzle together.

You know what? I'm tired! I'm tired of having to do this by myself. I'm tired of spending my waking hours trying to work out how to ease my baby's pain. I'm tired of eating a restricted diet for it not to solve all the problem. I'm tired of endless trips to medical appointments and me having to tell them what the next step is. I want someone to tell me what the problem is and how I can help him. I'm tired of trying to give him a milk that tastes like poo. I don't blame him for not wanting it. I'm tired of the relentless sleepless nights. I'm tired.
I want to give up. I want to say 'I've done my best, I've tried, I'm stuck now.'

But I can't. If I don't, who will? We've got to be nearly there. We've figured out he has allergies/intolerances. What's the last piece to the puzzle?

Neocate update : eww

I greatly underestimated the awful taste of Neocate. Yuk, it tastes like rotten sprouts! Like a good mum I took a sip first .... And have refused to ever put it in my mouth again. Unfortunately, that's the only option for my son, other than breast milk. He was willing to try it, he thought the bottle was a novelty, but refused any further sips. I sneakily put it in his 4 grain cereal this morning. Yesterday he wolfed down the cereal that I made with cool boiled water, today he took one mouthful then refused anymore. I cleaned out the bowl and made a fresh batch just with water, which he refused to open his mouth for.
Oh dear! Think we might have a struggle on our hands. I've done more searching and discovered that dieticians and doctors have suggested to other mums to use strawberry nesquik to try and disguise the taste, so I'm definitely giving that a go. But can it disguise the awful taste? Do strawberries taste nice with sprouts?
I remember once, somebody on Facebook made a negative comment on another mum they'd seen at a playgroup who let their child drink chocolate milk from a bottle. I'm only a second time mum, but I think nothing now of doing things other mums would look down on me for. I'd let him drink strawberry milk forever if it meant he'd be fully cured! Since my son's reactions to food have gone, he has become more settled. He can go two hours without waking now and even slept on his front at one point last night. His skin has cleared up nicely and the doctor remarked on how his stomach felt more settled and less bloated. He's pooed everyday and is VERY rarely sick. If we could just crack the silent reflux then I think his sleep would not be disturbed. Neocate might be the answer.


On another note, I took my toddler to his first hearing test yesterday. He has no problems with his hearing, but the health visitor wanted to rule it out as he doesn't say quite a few sounds when he talks. It was lovely to spend some on on one time with him. It doesn't happen often now, but it wasn't that long ago when it used to be just me and him when daddy was at work. I absolutely love his company. He's great fun to be around and well behaved. The health visitor asked if we were going to take him to nursery early, but I just can't bear to part with him till I have to. He's kept my sanity these past few months!

Feeding baby: time for a change?

In my purse I have a prescription for a formula that will be suitable for my multiple food protein intolerant baby. It's called Neocate and to buy it without prescription it costs £30-40 per 400g tin. Not a lot of GP's will prescribe it due to the cost, and I was prepared to go into my GP with my guns blazing in order to get this prescription for my baby. As it turned out, no guns were needed. My GP wrote the prescription without batting an eyelid and told me how to order repeat prescriptions if this is successful. What a blessing!

So now I have the prescription and the daunting task of making the transition lies ahead. I wanted the formula because although we've seen improvements since I've gone dairy, wheat, egg, nut, fish, tomato, citrus fruit free, my baby is still unsettled in his sleep and still has silent reflux. His diet is so basic that it can't be a reaction to his diet, so it must be mine. My health has deteriorated too, and breast feeding is taxing on my energies. I could really do without this added drain on my health as well as the freedom to allow other people to care for my baby.
Now I've got the formula all my hesitations are surfacing. I will miss feeding him. It's been a wonderful bonding time for us both and I have enjoyed the closeness very much. I worry that it will distress my baby, but I plan on making the change gradually so as not to distress him too much. And then there's the apparently awful taste of the stuff. I'm not quite sure how I'm going tackle that one!

My dream is to have a happy and content baby that sleeps well (for his sake as well as my own). Maybe the fire of my hope that we'll get there isn't burning bright right now, but it is still there flickering, gaining strength as we jump each hurdle.

Enjoying the sunshine.

What is it about the sunshine that clears away the cobwebs of life when it arrives? For us, It is the warm weather that invites us to get out and do something fun. My husband picked this week to have a holiday from work. He couldn't have picked a better week , with early summer arriving in England!
We wanted to make the most of his break, goodness knows we really needed a break! It's not so easily done in our situation though. Night after night of no sleep had left me with a lot of pain and no energy and a grumpy baby, but we weren't going to let that stop us.
The doctor told us to give baby antihistamines if he was reacting to food, so desperate to try anything we got some and they worked! He was much more settled and slept much better, only waking every couple of hours. Getting a better night sleep ensured that my body would get some rest to rejuvenate for the next day. And each day we planned scheduled nap times for the boys and myself.
Then in the afternoons we maximised on the fun we could have in the sun. We went to parks and to the beach - places where I could sit down, but the rest of the family could enjoy and run around.
Then at night I would go to bed once the boys were asleep to make sure I had plenty of resting time.
It still took its toll on me, and the week ended in sickness and exhaustion, but those three days felt like we were on holiday. The distraction from the same four walls has helped us all to shake off some of the burdens we were carrying.

The new path - allergies/intolerances

Finding solutions to a problem is rarely a straight course, as has been the case for finding solutions to our baby's condition. Looking back at my blog and thinking about our journey so far, there have been many times I think we may be on the right path, only to find that it has led us on to a new path. For instance, the 'back to basics' diet we tried sent baby's symptoms through the roof and we realised that he suffers with non IgE mediated food allergies and intolerances with reactions that last for DAYS! What does this mean for us now then? What's the new path? I'm going to try a low histamine diet as he has shown reactions to some foods that contain histamine. He can't tolerate dairy or wheat. He's shown allergic reactions to egg and nuts (?) and is still reacting, which must be to foods in my diet. Through researching on the net, I've found foods high in histamine, in a nutshell, are:
Processed meats
Fermented foods
Citrus fruits (banana is also suspect, so will have that moderately)
Dairy products
Chocolate
Wheat
Tomatoes, aubergine (eggplant), spinach
Fish (unless gutted and eaten fresh)
Alcohol ... Not that I drink it, but it might be useful information for those who are interested in this diet.

  I've also found a fantastic piece written by doctors on Australia to do with babies with allergies and intolerances. I'll hopefully be able to work out how to share a link successfully on here, for once, and post it! It describes my baby well, and how best to wean him. If the link doesn't work then google the 'food intolerant allergic baby' and it should be the first link.

http://home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html

Baby update

Daddy and grandad are swimming with the boys. To most, this event might be enjoyable but insignificant. In the life of MY baby this is a significant event! I can count on one finger the amount of times me and my baby have been apart for more than 10 minutes, and that's because he was sleeping. Right now I'm sat on my own, arms free, legs up, watching my boys splash in the water with big smiles on their faces. My baby doesn't even know I'm in the same room and he's happy. No money in the world can buy this feeling - priceless! I know daddy will appreciate the time with him too!


On another good note, these weeks of hell with reaction after reaction have shown that my baby has allergies and intolerances. That's right numerous. Weaning him is proving to be a minefield where the wrong foods can cause wheezing, rashes, increased reflux, sleepless nights, and irritability and clinginess. Even the medicine I've been giving to ease his teething pain causes reactions. It's been a hard slog, but it's helped us to see that extra help is needed. Blood tests are being arranged and dietician appointments have been set up. Hopefully, we'll be able to get the right sort of help. Won't it be great if it's as easy as that. Unfortunately, my own experiences and the experiences of others in similar situations have shown its not as easy. There is a world of different foods out there for us to try, which could a mean a whole load more of these hellish weeks. I'm breast feeding my baby still and whatever I eat can cause these reactions as well, so im on a restricted diet and I have to tread cautiously when trying new foods.

While on the subject of breast feeding, when I had my baby my goal was to breast feed till 6 months and then switch to formula. As it became apparent that baby had problems I continued to breast feed because my research showed that it was best for him in his condition. Now allergies and intolerances have come to light we can not give him regular formula even if we wanted to. There are formulas for babies who have multiple food intolerances and allergies, but they cost £40 a tin and last 2-3 days depending on the appetite of your baby (mine can feed constantly if having a bad reaction). There is no way we could afford to give him this, and GP surgeries fight every inch of the way not to give it to people because of the cost (quoting from experiences from an online forum). And so, we could be looking at breast feeding for the long term yet. As much as I advocate breast feeding for babies, I do have reservations when I think of breast feeding past one year (for myself, I hold no judgement on others doing it). However, I've thrown aside all the rest of my 'good parenting' rules out the window due to soothing and trying to ease my babies pain, it looks like I'll have to throw out my reservations on this too.

I'm not sure what's next on the road to recovery, but the past few weeks of torture have hopefully brought us one step closer!

You are not alone

I have consumed so much information about babies, their digestive systems and conditions pertaining to it that I am becoming overwhelmed by it all. There's so much to take in and my baby has so many symptoms that when I think I've reached the solution a spanner is thrown in the works and I'm left exhausted, confused and clueless again. I have one goal, and that is to find the solution to ease my babies pain, to make him happy, healthy and independent. My gut feeling tells me that he can get better. I spend my waking and sleeping hours trying to find out how.
After an emotional day last week I was told 'This is it, Jen, there isn't a solution you've got to live with it'.
I spent the boys nap time that day in earnest prayer. I wanted to know if I really was wasting my time. Had I been going down the wrong path this whole time? I read a general conference talk, which I can't find or remember now, but at that moment it was perfect. The speaker said whatever is important to me is important to Heavenly Father. I will know what is right and I have to stand up for it. My prayers will be answered.
The next talk I came across was the privilege of prayer by J Devn Cornish http://www.lds.org/general-conference/2011/10/the-privilege-of-prayer?lang=eng
Again, the message was repeated, what is important to me is important to Heavenly Father. I need to pray and my prayers will be answered. My job is to accept the guidance and recognise how my prayers are being answered.
I have felt immense comfort this week, knowing that when I felt alone in my quest I am not alone. I need to fine tune my abilities to recognise the promptings of the spirit to help me sift through the information I receive to try and find the help my poor baby needs.
This journey is painful, exhausting and relentless, but I need to remember that I am not alone. What a comfort!

Time will tell ..

I have spent months researching, praying, crying, despairing and wearing myself down to such a point that one small step down and I've reached rock bottom. It's a scary place to be, and at times I have panicked. I believe the solution that will head me in the direction away from rock bottom lies with getting myself and my baby better. I know I can handle the other things if I gain energy to make my body work. It really is a scary place when you feel your body shutting down and there are little people relying on you for their care and you don't know if you will be able to physically give them the care you need!

An angel came up to me two weeks ago and said she wanted to help me. I am at a stage that I am willing to accept whatever help is offered so I accepted her offer gratefully. This angel has been in a very similar situation to me and she is out the other side. She has health, she has energy, she is happy. She told me the solution to her problems was to change the foods she was eating. She likened it to putting the right fuel in a car. We spent the day at her house where she showed me lots of ways to make healthy, delicious food. She told me what foods were good for my body, she told me why the foods I have been eating were harmful to me. And it made sense! I love my food, I have begrudged my previous diets for denying me of scrummy foods. But this time it's different, it feels right, it feels healthy, it feels like my body is asking for it. That's not to say I won't begrudge it tomorrow and that I won't find it difficult, but it does make sense!
Will it work? Only time will tell. Is this the solution to my problems? I don't know, but I am willing to try it because it feels right.
What does it entail? No gluten, no dairy, no sugar, meat sparingly, no potatoes or tomatoes during the detox, but then all fruits, vegetables, raw chocolate, and other superfoods. Basically, it's getting back to basics! It's getting rid of all the foods that have been refined, modified etc for our modern day diets and eating food as it was meant to be eaten.
For a condition that is caused by a build up of toxins in the body, doesn't it make sense to remove the toxins? As for my baby, I hope it will help him too. Since Christmas I have been adamant that I don't want him on the medicines as they didn't work and as I learnt more about his condition and intolerances I have felt that we needed to help him by diet. By knowing what foods can help heal his gut as well as avoiding the foods that irritate his gut. This makes sense to me. But again, only time will tell if this is the way forward.
Watch this space!

Some nights are worth it!

I went out on Saturday night. It's been over 8 months since I had a night out of the house. I've turned down invites left, right and centre in favour of conserving energy and looking after my baby. I knew there would be consequences to having a night out. This is the main reason I haven't been anywhere. With M.E your body punishes you if you have any fun (this is what it feels like anyway.) But I did it, I went out. Baby in tow. And do you know what? It really was worth the consequences!
Right up until Saturday afternoon I wasn't going out. I didn't want to take out an awkward, screaming, refluxing baby. I didn't want to experience the increase in pain, the exhaustion and heaviness that would inevitably follow. And my husband had booked time off work to go to a football match as he knew I wasn't going out, so I needed to look after my toddler.
Then the night got closer and the realisation hit me - that some of my most favourite people in the whole world were meeting up and we hadn't had a night like this since we were single. Without a second thought my husband told me that I should go, he would miss the match and take our toddler on a boys night. My sister said she would help me get ready as she was coming too, and the others assured me that they were there to help me. I had lots of concerns, but the night went so well. There was lots of laughter, good food, but the company was the best.
Three days on and I'm still paying for it, but the emotional strength it gave me is worth every bit of pain, exhaustion and heaviness. Pacing is a good technique to help maintain your energy levels, but on rare occasions, a good blow out is needed to feed the soul!

A precious moment

I lay in bed last night with two very poorly boys finally asleep next to me. My body was very heavy and tingled with pain and I knew it was unlikely that I'd get the rest I needed to recover. As per usual when trying to get to sleep my thoughts wandered. In 8 months I have sacrificed all my time, my health, my sleep .. And oft times, my sanity to my children. I have turned down nights out and day trips to conserve energy so I can look after my boys. Time to myself used to be a necessity, but now it's a luxury that I doubt I'll be able to enjoy for some time yet.
There have been moments when I have begrudged my boys this time, but last night wasn't one of them. Maybe it was because I had my eldest with me and that is a very rare occurrence at night time, but it enabled me to see that this time I have with them won't last forever. Already my two year old is becoming more and more independent. It brings me a lot of happiness seeing him wave me good bye as he heads off to nursery without me. It doesn't seem two minutes since he was at the stage my eight month old is now, where he cries if he can't see me, and now I'm uncool when he's with his friends. One day they'll serve missions, go off to university, get married and have their own kids. Thinking that one day they won't need me anymore I gave them both a sleepy kiss and cuddle, and felt grateful they needed me then.

Desperate times call for desperate measures

After the last attempt at doing a restrictive diet I said that it would take a lot for me to be able to succeed at limiting my diet. I was sure I wasn't going to attempt it again, it was too much hard work. I needed comfort food to help me cope with life.
Well, times have got desperate and it appears that a diet free from dairy, soya and gluten is the only option to improve my deteriorating health and a last ditch attempt to help my baby before they dose him up on all sorts of medicines as just going dairy free hasn't shown significant improvements. In my book, that's motivation enough to try it again.

The key this time is that I'm going to be organised. Before I begin I will not only have meal plans for at least two weeks (aiming for a month) but I will plan what snacks I can have and what breakfast and lunch options there are. Preparation is essential for success!

I'll make sure to post my menu's, and foods that I can eat, so that others who are attempting something similar can refer to it.

A valentines gift to my partner in crime!

Like every other big event since we've had our second baby, valentines day has snuck upon us and we are completely unprepared. Seeing all the gifts that others have bought their loved ones, or hearing about what they've done for each other did make me feel a pang of guilt.
Well, Stan, I may not be able to make you a cooked breakfast, heart shaped cookies and treat you to a slap up meal. But I do love you and these are the reasons why:
• I love that you don't expect anything of me, you love who I am and who I'm not and let me know it often.
• I love that you adore and love our boys and find everything they do amazing.
• I love how generous you are with us and those around us.
• I love the random comments or words that you say that come out of the blue and make me laugh from right down deep.
• I love it when I feel down or worried you really listen to me and help me see things clearer. Even if it may seem silly to you you never make me feel silly.
• I love that you go to work every day to support us financially.
• I love how on most days you order me to not do anything in the house because you can do it when you get home from work. (I don't like that I can't do these things, but like that you're never bothered that I can't),
• I love how you take everything in your stride. You just deal with whatever life throws at you and you never lose faith.
• I love that you always put family first.
• I love that you enjoy our company as much as we enjoy yours.
• I love the tricks and surprises you play on me and the kids!
• I love how handsome you are.
• I love how determined you are and how you take pride in everything that you do.
• I love how loyal you are to family, friends, people you serve in the church.
• I love that you value education and progression and really care about our kids and the youth.
• I love that you genuinely care about anyone you know.
• I love that after nearly 4 years of being married to you I still love you as much, and even more than I did when we got married.

Happy valentines day to my wonderful husband!

My 3 steps to happiness

I was shocked to read on a GORD (gastro-oesophageal reflux disease) forum that the majority of mums on there are on antidepressants to help them cope. It shocked me because I realised that could very well be me. Many M.E sufferers experience depression too. I've got double the chance.

Ive never suffered from depression, for which i feel truly grateful, it is a horrible illness. There has, however, been so many times that I have felt despair at the situation I found myself in. So many times I cried and found it difficult to put things into perspective. There have been numerous occasions since becoming poorly with M.E that I have fought a battle with myself to be positive, happy and hopeful when I wanted to feel anger, hurt and self pity. Each time I have experienced that pull downwards I would literally drag myself up emotionally by the power of my choices.
The first step in winning the battle was to make the choice to want to be happy.
Once I made that choice I would turn to my Saviour. Like it says in Helaman 5:12 (Book of Mormon)
it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.
I knew then that with my Saviours help there was no way I could be pulled down to the depths of misery unless I wanted to go.
The last step was to enlist the help of my family. I needed their support physically to help me do the things I struggled to do myself, patience to bear with my emotions as i tried to gain control over them and encouragement to ensure me that i could win the battle
It's a hard battle to win and the fact I find myself still fighting it at times means its not over, but I know I can win!

Feeling the chill

Due to the extremely chilly temperatures we've been having in the UK recently (chilly for what we're used to anyway) my ME has come back with a vengeance. I noticed one morning that I was incredibly sore, nauseous and very heavy and couldn't fathom why. We'd had an easy day the day before, and I'd been in bed since 9pm the night before (not sleeping all that time, baby took care of that!). It wasn't till I looked at the thick frost outside that I realised the cold was the culprit. Needless to say we cranked up the heating and I've been mostly wearing my pj's with hoodies.
Its not a bother to me like it used to be, but it does get slightly concerning when I can feel my body slowly stopping as I do things, I wonder how long I've got till it stops moving, but fortunately we've not reached that point yet.
We went to the park the other afternoon, only for 20 minutes, but it was enough to render me useless that evening. I'm so blessed to have a husband who paced and paced the floor with baby that night while I lay in bed.
It might be debilitating, but this cold weather is a great excuse for cozy, lazy days, watching films and watching the kids play.

Dairy free update

My name is Jenny and I've been dairy free for 5 days.

It's actually going really well. I haven't found it difficult and the motivation that it might actually help my baby is spurring me on. So far we've noticed that the bloating in his stomach has lessened, he's pooed more, and has slept for longer periods at night. All very positive. On the downside, he has become even more clingy and irritable, harder to get to sleep amongst other symptoms (all the usual arching, coughing, wheezing, face rubbing etc). The hard part is trying to figure out what on earth is causing him to be worse in some things. Is it a reaction to the new food I'm weaning him on? Is it teething? I'm flummoxed!
The plan now is to go back to the 'safe' foods I know he can tolerate. So far this is plain 4 grain cereal and butternut squash. Someone gave me a traffic light system to introducing new foods, so I'll now follow this:

GREEN - Courgette, melon, parsnip, pear, pumpkin, squash, swede.
AMBER - Avocado, blueberry, broccoli, banana, carrot, cabbage, cauliflower, leek, mango, peach, pepper, spinach, sweet potato.
RED - apple, Blackberry, citrus fruits, onion, pineapple, raspberry, strawberry.

A good idea, in my opinion, is that every baby born should come with a detailed manual. It would come in very handy!

Light at the end of the tunnel?

I see light ahead! We had a hospital appointment today. Before this appointment there has been weeks of researching, praying and pondering. I've been trying to formulate a plan of what I wanted to achieve at this appointment. As lovely as my GP is she has no clue about what is wrong with my son. A lovely friend of my husbands led me to an online forum for mums of babies who suffer from 'reflux' and I not only received invaluable help from them but I was able to gleam lots of information from their own experiences. I evaluated my baby's history and symptoms and tried to see if any of the information I had found would be fit for him.
I've also been going through my own spiritual journey, and finally came to the realisation (again) that the Lord knows what He is doing.
So, while we drove to my in laws yesterday, my husband and I spoke about what we would take into the appointment with us. We decided we didn't want any medication for baby. All the medication he had been on had made him react badly and also didn't work. If possible, we wanted to see if a dietary regime could improve his symptoms, specifically dairy free, as so many babies appeared to have improved since going dairy free.

When I told the consultant about our history, she examined him and then she said 'it's not reflux'. Needless to say I was shocked and anxious to see where she was going with this. She then went on to say that the reflux was a symptom of an underlying cause. Before i could tell her what i thought about diet she said she suspects that the cause of these symptoms are actually a cows milk protein intolerance (or CMPI). I could have hugged the doctor! Firstly because she had listened and taken into consideration ALL his symptoms and not just the reflux. And secondly because she had confirmed the feelings that I had been having. What a blessing!

Today, we go shopping for a dairy free diet for me. As much as I know I'm going to miss chocolate (which has been my staple intake) I'm quite excited to see if it's going to work. We've got 6 weeks to see if it will make a difference, here's hoping! You never know, it might help me too. I've been on a restricted diet before and it helped, but this time I've got more of an incentive!

Bearing the burden

Sometimes I can hear something I've already heard before and it hits me like new again. I had such an epiphany whilst speaking to my mother yesterday. She had been studying the scriptures when she came across a chapter that she felt she should share with me. This happens whenever I'm struggling, she always finds the perfect story or scripture to help me. After fighting against my trials for a while I've come to the point where I feel ready to listen to what I need to hear and this passage of scripture was just right. It's from the Book of Mormon and at this point some people are in bondage to another group. They pray and this is the response the Lord gives.
And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.
15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.
Mosiah 24:14-15

I've been wanting and asking for my burdens to be lifted, but all I've been told so far is to be happy. Whenever I've heard talks or read scriptures and books, I've got the feeling I need to be happy. I just couldn't fathom how I could be happy about working like a Trojan everyday, with everything being such hard work. I could smile and pretend, but how could I be happy? Then when I read this I realised I had to accept that this is my life now and change my life accordingly. I've got to work with it. I once heard that if you don't like what you have to do then make it fun somehow. Anyone with a toddler knows that they love to have fun, so my two year old has been my inspiration. We sing and dance now whilst I pace the floor to get my baby to sleep as one example. My body still aches with pain, I still feel times of nausea but then that's when I'm given respite after doing all I can. I'll be blessed with a nap and rest while the boys sleep, or a friend will come over with dinner prepared or to ease my burden at home. My parents live 5 minutes away, so we often go round they do a lot for me. Not to mention how much my husband does at home! My job is to submit to my burdens cheerfully and I believe as I do so they will be made light.

And so it begins ...

After 11 days of just breast milk we transitioned our little baby back onto solids today. I have to admit, this is a journey that fills me with trepidation. The last time he was weaned he was on omeprazole as well and with each new food his reflux symptoms seemed to be spiralling out of control. I didn't know what the culprit was - the medicine or the food. So we stripped all back and we are starting from the beginning. Meds free! We've not noticed a difference without medication. He's no worse, but he's no better either. Some days are bad, some days are worse. I've kept a diary of his symptoms so I'll hopefully be able to recognise if any foods are causing an increase in his reflux.

I'm dreading weaning again because I have to live with the consequences of what introducing a new food might mean to baby. My body feels like its running on empty on a good day, so I delve into negative energy on bad days. It just so happens that we are starting on such a day. My baby constantly fed and wriggled and squirmed till 2 am, unable to settle. Then once he settled it was the usual 30 mins - 1 hour wake up till morning. I'm not sure what caused this. I can only think it was the mild chili con carne I had for tea as that was the only difference to either of our diets. However, we plod on.

I've began weaning baby this time on Plum 4 grain cereal. The grains include quinoa and amaranth. Both grains I was allowed when following the strict diet for my ME. He ate it well and finished the portion I gave him. 3 hours later I've seen no difference to his symptoms. We'll carry on with this for a few days and gradually increase the number of meals, so that his delicate digestive system isn't over loaded. He got constipated last time and administering a suppository is something neither of us want to repeat in a hurry!

One other thing i need to mention is the miracle of the sling. Why had I not tried this before? A kind friend has let me borrow hers and what a difference it has made these past three days! Carrying baby in a sling has kept him upright (essential for a refluxer), allowed me to have TWO (yes, that's right TWO) hands free, and enabled me to shift the weight bearing from my arms and wrists, to my shoulders and torso. I still need to pace baby to sleep, but it has been easier and a few times he's slept while I've been doing other things! Needless to say, I'm searching eBay now for one of our own.

Reintroduction

First of all I want to say a big thank you to all those who have read my blog thus far. It's been wonderfully comforting to know that other people have taken an interest in my life and are rooting for me. I began writing a blog because I felt prompted to. I thought this was because I could achieve big things with it. I could raise awareness of M.E, I could help other sufferers. As time has gone on I've realised the blog wasn't for anyone else, it was for me. It was an outlet for my feelings, a strategy to cope with the trials that lay ahead and a portal for finding friends that would strengthen, cheer and help me along the way.
This time hasn't ended, but I'm struggling to write a blog that I defined into one category. I used to just have M.E, but now I'm a wife, and a mother and one of my kids has reflux. All these things combined make my life about a lot more than just M.E. So, Thats what I want to write about. My WHOLE life and not just one thing in it.
Let me start over. My name is Jennifer Barber. I'm thirty one years old. I'm married to an extremely understanding and supportive husband. I have a toddler who I'm sure is an angel in cute clothing and I have a baby who is my constant companion 24 hours a day, 7 days a week. I'm sure he was sent to try me, but I love him all the more because of it. I'm a member of The Church of Jesus Christ of Latterday Saints and my faith is what influences every decision I make, what kind of wife I am, how I raise my kids and the reason why I do what I do. This is me, this is my life, and this is my blog. :)

The healing power of a good moan

In contrast to my previous blog posts I want to write about the other way to deal with trials. After speaking to some friends who are going through some hard times it made me realise that sometimes we do just need to have a 'moan'. In our conversations they would say 'I know it's going to end' or 'I know people have it harder'. These statements are true, but it doesn't mean that what we're going through at that time isn't difficult. Most days I get up and decide its going to be a good day that day. Then as time goes on and I find myself unable to accomplish the necessary tasks due to having one available hand, or a screaming baby, I begin to find it difficult. My body gets even more tired and it becomes hard work. On these occasions all I need is a good rant and moan. Get all that anger and negativity out of me and then I can continue. I'm not looking for a solution, I'm not looking for a 'keep your chin up'. I want someone, just for that moment to listen, agree and then I can carry on. I can go back to climbing the mountain, or accomplishing the impossible tasks. I'm not saying its good to moan all the time. However, most people I know are positive people who are desperately trying to 'keep their chin up' during some really difficult times. They struggle along with a smile on their face until they reach boiling point. Then they break and feel bad for doing it. What I say is, it's ok to break. It's good to get it out when you can't take any more. Let the burden off your shoulders so you can keep plodding on.

This time next year we'll be millionaires ..

Like del boy I've found myself living for the future since I became ill and more particularly since having a reflux baby. I don't wish for money, although that would be nice. I find myself thinking of the day I'll be dancing again, running in the park with my boys. And most of all I look forward to the day that I can go on a proper date with my husband. We got together when I was very poorly and then children came along and zapped all my spare energy and our time. So dates are very few and far between.
I've been wondering recently if this way of thinking is healthy. But what do we live for if we don't have a hope for the future. The thought of the weekend gets us through our working week. The warmth of the summer helps us endure the wet and cold of the winter. If you're religious, like me, the promise of an eternal paradise with our friends and family waiting for us after this life sustains us through the hard times.
But we live in the present and if we're to get through it we have to find some enjoyment in it. They are precious moments that provide us with respite that propels us to keep going. They may be only brief, but they're enough. After a hard night of waking up countless times with my baby I awoke to his little hand on my face and a smile so wide greeted me as I opened my eyes. It didn't matter how tired I was, that scrumptious little face cheered me immensely.
Finding joy in the present can be difficult, but from experience, it's so necessary. Unfortunately, the power to have joy is within us. We are usually the ones that have to change to experience it. I say unfortunately because a lot of the time I want my circumstances to change. However, what I need to remember is that I'm fortunate to have the ability to be happy despite my circumstances. So, I'll be hunting daily to find these moments. Being happy is so much nicer than not!

A spiritual new year

I love new year. To me it is a significant passage of time. A fresh start. I try and make resolutions every year and since having M.E my goals have not been physical, but more emotional and spiritual. The last half of 2011 was extremely difficult for me physically and so took its toll on me emotionally. I wanted to set goals to make 2012 a better year, but the things that would make me happy were out of my control. Instead I had to think outside the box and look for things to make me happy that were in my control.
I decided my goal for 2012 was to become more like Jesus Christ. I believe that through getting to know him through the scriptures and emulate His example I will find peace, I will strengthen my relationships with my family and friends and have courage to face my trials.
We've been in 2012 for a week now and whilst I have thought about my goal and tried hard every day, I have failed every day. At least with this goal I can keep trying.

I find my trials difficult to bear at times, but reading these inspired words by our prophet Thomas S Monson, has given me emotional strength to keep trying.
"There will be times when you will be frightened and discouraged. You may feel that you are defeated. The odds of obtaining victory may appear overwhelming. At times you may feel like David trying to fight Goliath. But remember—David did win!... "Have the determination to make the effort, the single-mindedness to work toward a worthy goal, and the courage not only to face the challenges that inevitably come but also to make a second effort, should such be required. Sometimes courage is the little voice at the end of the day that says, “I’ll try again tomorrow.”

I Often wonder how my thoughts and feelings can be described so well by someone else. I do get frightened, I do get discouraged. I also know that there are too many of my friends and family going through their own trials at the moment. So, to all of us I wish that 2012 can be our year. Our trials may not change, but may we have the courage to face them and find peace and happiness.

You gotta have friends

"A friend is one who walks in when others walk out"
-Walter Winchell

I've been thinking about friends a lot recently. When I first became ill and was bed bound (or rather, couch bound) I felt the loss of friendship deeply. When I was well I made the effort, I went out to all the social events, I approached anyone and everyone and was happy with the friends I had. I classed everyone as my friend. It all changed when I was no longer fit enough to make the effort. People had to come to me and so my social life dwindled rapidly. The odd few came to visit and I still think back now at what great friends they were to make that effort for me.
Once I got a bit of energy back and was able to make more of an effort to go out my friends increased again and life was good. I was social again.
Now I'm pretty much housebound. I'm no longer able to make the effort to go out that often. What I value now as much as I did in the beginning are those friends who make the effort when I'm not able to, and to those new friends I've made because they come to help me in my hour of need. It's times like these when true friends show their worth. This is a shout out to them, and a wake up call to me. I hope I can be that kind of friend in someone else's time of need.