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 :)

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

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!

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.

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!