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 :)

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

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.

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.

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. :)

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!

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.

Enjoying the season.

I always look forward to Christmas with excitement and anticipation and hope. Even when I became ill this never changed. What changed then was my capability to enjoy Christmas when it arrived. I take it easy with the buying and wrapping presents on the lead up to Christmas, but there's no possibility of taking it easy when it hits.
This year was a wonderful Christmas, we were surrounded by family and for me this is heaven. I love my family. The sad thing is I can't enjoy it like I used to. As an M.E sufferer I feel bombarded with noise and commotion. A sensory overload exhausts me and each night I would come home as tired, sore, headachey and nauseous as if I'd gone for a walk that afternoon. I'm lucky that I have no responsibilities at Christmas, my wonderful husband and family take over and allow me to use my energy to enjoy the festivities. I know I'm one of the lucky ones with understanding family and friends. They would tell me to use my kid free time to rest, but nearly five years of having M.E and I still don't want to miss out on all the fun. Some things really are worth the consequences.
Saying that though, my husband and I are planning on a nice, relaxing QUIET New Years Eve! ... If the kids permit, that is.

Climbing mountains

For the first time in a long time my M.E. has taken second place to the condition of my son. I've not known what to write in my blog because my mind is constantly on 'reflux'. I'm a 'reflux mum' now as well as an M.E mum.
Caring for a refluxer means
1) Keeping him upright after every feed. This means carrying him, as baby bouncers and walkers can aggravate his digestion because of the pressure.
2) Pacing the floor holding him in upright positions trying to get him to sleep, but eventually feeding him off to sleep as only the milk will soothe the acid indigestion that arises.
3) Holding him in an upright or side laying position whilst sleeping - day and night.
4) Only getting 40-60 mins sleep at a time and then nursing him back off to sleep by soothing his tummy and throat.
There's more involved, but the list is to show the physical requirements of dealing with a child with reflux, so its not surprising my condition has deteriorated somewhat.
A friend asked me what M.E felt like the other day. At first I wanted to say it feels like the flu. But then I remembered going on a hiking trip in Utah a few summers ago. When we had hiked the mountain for a few hours in the heat I became light headed, My unfit body was weary, heavy and slow to move and my muscles ached. I thought this described how I felt every time I do something. If I do too much it also feels like I have the flu (without the runny nose). My glands swell and I can't regulate body temperature so I feel either hot or cold.

Every day I climb that mountain now. I have to, I have children to take care of. But thankfully, I don't have to do this alone. So many angels in the form of family and friends give me a hand to hold as I climb.

Getting through the winter

My body is shutting down for winter. Not only is it shutting down, but it's causing me some serious pain. Owwee owwee OUCH!
If I was rich I'd fly south like the birds. But I'm not. So, I'm going to follow the example of the animals and hibernate instead.
I'll venture out for supplies, to go to church and the odd event for my son. For anything else I'll see you in the spring ... Or online ;)

If you want to find me I'll be snuggled in blankets, watching Christmas films, drinking hot chocolate, eating Christmas pudding. All under the glow of the Christmas tree lights.

If only!

Finding strength beyond my own

My time and energy recently has been spent mainly pacing the floor with my 5 month old trying to pacify him. We've had, and are still having, doctors appointments and hospital appointments to try and find something that will get him better. Nothing seems to be working, and so I've even resorted to giving up chocolate (well, dairy, but I'm only bothered about the chocolate!) to see if that helps. I've not noticed that it makes too much of a difference. I've read it might take one to two weeks to notice a change , eeek! It's a good job I love him!
I've been through a bit of an emotional roller coaster these past few weeks. I always feel down when my health takes a turn for the worst, but having to deal with a sick baby who requires so much attention and energy and little sleep was a real test to my limits. The situation hasn't changed to make me feel better. I did. I realised it was no good praying for a miracle to get my baby back, instead I pray for wisdom for myself and the doctors to discover what will help. Then I research his symptoms, I look for tips that other mums use to cope. I pray for strength to handle the pacing and rocking, the lack of sleep. I accept and even ask for help. This is a very big step for me. Nearly five years of illness has not made it any easier to receive help. I prioritise where I will spend what little energy I have. The housework and food preparation are put on the back burner, whilst I try to give time and attention to my older son and husband when baby permits. Changing my attitude towards the situation has helped me cope with it a hundred times better than a 'why me' attitude. It's amazing what strength you find where you thought there wasn't any!

Christmas countdown

I start counting down to Christmas after my birthday in October. I begin by making lists of everything I need to do and buy and who to get presents for, then I make my way through the lists. This year time seems to be going quickly and with all the illness my mind just hasn't been on Christmas at all. Having M.E there is no option to go last minute Christmas shopping as its all done on the Internet. Saying that though, I attempted a trip to Tesco last Saturday and made a promise to myself I would never do that again! It was survival of the fittest, every man for himself. Needless to say I barely came out alive. Luckily I was with my mum, so I left the goods with her, and sought peace, rest and sanity in the car while she finished up. Finding peace, rest and sanity in the presence of two young kids tells you what it was like in Tesco!

I think I've come to terms with the fact that my baby is probably going to be ill for the duration of the season, so instead of fighting against it I'm going to try to adapt and work around it, which will mean doing everything with a baby in one arm. I made my first list this week to prepare for Christmas. A list for who I need to BUY presents for. Today, I bought my first presents! I had a toddler in one arm, baby in the other and I somehow managed to navigate my way around Tesco's website and thanks to club card vouchers I got all the presents for free. Great feeling. Let the Christmas countdown begin ... Just not too quickly!

My favourite things

I've been hesitant to write my blog for fear of becoming monotonous. Life has got tough and I've been finding it a struggle to think of positive things to write, or even to write about my life humorously and then who would want to read the rants of a moany old grump. But, this is life as a mum with M.E. It's flipping hard work.
The inspiring quotes that people are bombarding Facebook with are not really cutting it with me at the moment. Instead I'm going to put Julie Andrews to the test, she sang 'I simply remember my favourite things, and then I don't feel so bad' in the Sound of Music. Let's see if it works.
1) cheesy but true - my husband. He's so silly and random and treats me! He never expects me to do anything during the days and so there's no pressure to push myself. Perfect!
2) my shower - a hot shower for me is like how I imagine addicts feel when they get their fix. It's a need (for cleanliness, and muscle relaxant to ease my pain) but also a pleasure, time for myself.
3) my snack cupboard - not the cupboard itself, but the delectable treats within - yum!
4) my iphone - my life in my pocket.
5) my baby's cheeks, chubby legs, sausage fingers etc - kissing them has healing properties
6) my toddlers facial expressions - he can make me laugh when nothing else can.
7) my new boots - they actually make me feel like a million dollars.
8) my scriptures app - can delve deeper and learn more without having to cart books around.

That's enough for now. It's important to say these are in no particular order. Don't want people worrying about where my priorities are!
It worked though. Life may be tough, but there are great things in it!

Intro

As I sit and watch my three month old kicking and gurgling in his play mat, whilst my two year old pushes his cars around the floor wearing only a vest and pumpkin hat I wonder what life would have been like had I not made the leap of faith to have a baby nearly three years ago.

Back then I suffered quite badly with M.E/CFS. I was barely able to walk or even sit up without feeling extreme fatigue and pain. Even though my husband and I had heard that pregnancy may cure my condition, we found little evidence to support it. We both desired to have children, but found the decision a hard one to make. Could I risk bringing a new life into the world when I could barely take care of myself? After lots of thought, discussions with family members and prayer, we decided to take the plunge and have never looked back.

I hope my blog about life with a family and M.E/CFS will aid others who are also making this decision, and give hints, tips, support to parents and those in the same boat and provide insight to the condition to those who know little about it.