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

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.