Chronic Fatigue Syndrome

In my first post I mentioned that I had been dealing with a number of health issues for the past....ooh 10 years I suppose. While some of the conditions I've been dealing with have been life threatening, it's Chronic Fatigue Syndrome that has had the biggest impact on my life. As my health has continued to improve these past 3 months or so, I'm finding it increasingly difficult to remember just what it was like to live with fatigue. Having the flu has triggered my memory and I thought I'd get it down before I start to forget again.

I was diagnosed with CFS in 2001 after a long time of struggling with fatigue, brain fog, and a host of other transient and seemingly unrelated symptoms. Before my diagnosis I'd heard very little about CFS and was not sure if it was really even real. It took quite awhile to be diagnosed as I was already dealing with the physical effects of a mosquito borne disease and a pair of auto-immune diseases. Both of these can also create the symptoms that I was experiencing. When I talk about fatigue I don't mean really, really tired due to being overly busy or from having performed some marvelous feat of physical endurance. I mean fatigue, debilitating fatigue that doesn't go away no matter how much you rest or how little you do. I'd go for months and not be able to stand up in the shower because it took too much out of me. I would shake, get heart palpitations and sleep like the dead for 3-4 hours after bathing because it took so much out of me. Sometimes I couldn't get myself off the toilet I was so tired and weak (thankfully I always got there in the first place!). The worst was when I couldn't unscrew the lid on the milk bottle. I'd have to wait for my neighbour to come down to check his mail so he could open it or even worse, I'd have to wait until Jeff came home from work. Imagine not even being able to make a cup of tea for yourself (I obviously have milk in my tea :)).

The level of fatigue that I am talking about impacts every little aspect of your life. Holding a conversation with someone is exhausting and can leave you 'bottomed out' for days on end. Doing the housework, driving the car, doing the grocery shopping, preparing meals, having a life all become a HUGE struggle. Some days I would be so tired that I wouldn't even bathe because all that is involved took energy that I simply did not have. When you are healthy you don't think about the energy involved in simple acts like bathing. You need to go to the bedroom and get fresh clothes then head to the bathroom. Then you need to take your current clothing off - this requires lifting your arms above your head and bending down - these require more energy. Then you need to get in the shower and do more of the arms up, arms down business = more energy. My God, then you have to get out and use a towel which by this time feels as heavy as lead to your fatigued muscles. Finally you need to get dressed which requires bending up and down, lifting legs, fastening zips, buttons etc. Let me tell you on some days it is just impossible to do.

Being so exhausted and having such little things total you effects you in a number of ways. I found I lost all spontaneity. Being spontaneous requires energy and that was something I obviously didn't have. I found that I had to plan everything and to micromanage my life in order to get the most out of what energy I had. Life becomes an endless stream of compromises e.g. cook a healthy dinner or be able to take a shower; talk to a friend on the phone or pay the bills that are waiting. You rarely have energy to do both. Something as normal and as simple as going for coffee with girlfriends becomes overwhelmingly impossible on some days and always resulted in days of being totally wiped out and unable to do anything but sleep. As a result you become socially isolated and disconnected from the things that you once enjoyed doing. I love to paint, draw, sew and do a variety of crafts but I was able to do very little and had to learn to do things in 5 minutes sessions, sometimes less.

All of this sleeping and lying around on the couch watching DVD's of course contributed to my weight gain. How do you exercise when you can't even bathe? Having come from an active background I knew how important exercise is to maintaining health and as part of the recovery process. No matter how tired I was I tried to do something every day - this needed a huge adjustment in thinking and I needed to redefine my idea of what exercise was. Previously I'd walk for an hour or swim or cycle. Now a walk consisted of trying to get out to the mailbox and back or to make it to my back fence. Weight lifting turned into doing 1 or 2 moves but minus the weights - just taking my muscles through the range of motion. Stretches were given to me by the physio and were done in bed. Exercise was only done on 'good days' and I needed to learn to see any movement and any ability to string together consecutive days of movement as a huge success.

As I learned to manage my life and home more effectively (thank you Flylady) I became better at managing my energy. I wasn't always successful of course. I'd get excited on a good day and do too much which would send me back to bed. I'd have crashes (where energy bottoms out very badly) at unexpected times and for no apparent reason. But I persevered and kept my mind focused on the good in my life. I think one of the most beneficial things I did for myself was making myself have forced rest every day between 12 and 3 whether I felt I needed it or not. This helped my body to build up some reserves and my new respect for energy made me use these reserves wisely.

I've found a pretty good description of what I'm talking about at Spoon theory. Check out the link, it's a fantastic description to help you understand anyone dealing with a serious illness, not just chronic fatigue.

Fatigue is a significant barrier to well being and weight control. But through trial and error, perseverance and the passing of time I am starting to win the battle.

I'm sick but back

I'm curled up on the couch today under a gorgeous crochet blanket that my Grandmother made for me way back when I was small. It's my go to blanket when I'm feeling poorly and in need of a comforting snuggle. Here it is below. Isn't it lovely?
This same blanket gives children protection from things that go bump in the night, makes you better if you are sick, as well as pouring it's rainbow of colours inside them to help them have wonderful dreams. I make up stories about it's magical properties when faced with kids with belly aches, who are scared of the dark at my place (we have no street lighting so its DARK) etc. It's basically a cure all and works a treat.

I've been away from my blog for what seems like ages. Life just became unexpectedly busy and full and now as it has slowed down again I've come down all fluey. Phht. A few weeks ago we received a call during our evening meal asking whether we could provide emergency accommodation for a Danish exchange student who needed to leave her original host. As I've mentioned before we were to host another girl but that fell through. We said yes and it turned out to be the best thing ever. We got to spend 2 wonderful weeks with a fun, sweet, considerate, mature and intelligent young lady. I didn't expect to bond with her but we bonded very quickly and became quite close. It was so special and she was a remarkable young lady. So the past couple of weeks have been full of sight seeing, movie nights, shopping, more sight seeing, bush walking, scout camps and lots of fun and good times. I'm so pleased that we said yes. Scroll down to see a post about one of our outings.

I've also done something big and monumental but will save that big step forward for a post of it's own....

Hope you are all well and haven't forgotten me!

How to walk nearly 9k

Head to Australia Zoo for the day and you can certainly burn off some calories. We recently became a host family to a delightful young Danish exchange scout (not the one we were originally to have), and she and I headed off to the zoo for the day.

We patted kangaroos. There are two large enclosures for the kangaroos and you just wander through and take photos, pat, take more photos as the fancy takes you. The roos have private sections where they can go and have some time out away from we annoying humans but there are always plenty to see. You can buy bags of feed for them to snack on too. We ran into my sister, Mum, my 4 year old niece and 2 almost 3 year old nephews while we were here. One nephew when asked what he had seen at the zoo answered, "A plane". In his defence one had just flown over! Good to see the pony ride he'd just had made an impact! :)
We oggled echidnas hiding in logs. Love echidnas (Australia's version of a hedgehog, porcupine although I think ours is anatomically a bit weirder reproductive wise).
We snapped snoozing koalas. A couple had babies but I wasn't able to get you a good photo as the bubs were snuggled right in. The little one below is having a bit of a feast.

Australia Zoo (of Steve Irwin fame) is a brilliant day out and it's shown me that I can walk a damn long way while having fun. It's close by and I have an annual pass so might have to include it in my 'places to walk regularly'. Was I tired after my big day at the zoo? Oh yes indeed. I was stuffed actually but our host daughter had a blast and that is what was most important.

What I eat

I've put a lot of thought and invested many, many hours over the past 10 years into investigating the relationship between nutrition and health. The knowledge I have gained from this and my awareness of how my own body reacts to different foods has influenced my food choices and definitely impacts my menu planning. My diet now consists of foods that help to reduce inflammation; protect against cancer (or have been shown to actively fight cancer); don't trigger fatigue; and that make me feel good.

Fruit and Veg
I eat a wide variety of fresh fruits, vegetables and herbs. I try to include different variety throughout the day and within each meal. For example if I have strawberries or blueberries on my breakfast cereal, then I will choose a different type of fruit later in the day. Freshly made fruit salad is a great way to get a variety of nutrients and digestive enzymes in one hit. With veg I try to have some raw (salad) and some cooked each day. When I make a salad I focus on including lots of variety and lots of different colours, the more colour the better. I do the same with our veg and always include green. Eat lots of green. I tend to use lots of garlic and fresh ginger for their health benefits and the flavour that it gives food. I try to include other fresh herbs daily whether sprinkled through a salad or over roast veg, or even included in marinades, casseroles etc. I generally make plant based foods to be the main part of each meal. I usually buy seasonal produce and the best of what is available and affordable to me.

Protein

Most of our protein is eaten in the form of skinless chicken breasts. They are extremely versatile and they taste so different at each meal as I prepare them with different herbs, marinades and prepare them in so many different ways. All chicken that we eat is skinless unless I am roasting a whole chook. I buy free range, organic where possible. We also eat quite a bit of seafood that I also prepare in lots of different ways, using herbs, citrus, spices etc to create variety. Red meat is always lean and we eat it infrequently. We also eat vegetarian meals a few times per week where our protein comes from legumes, lentils. I make a mean dahl! Eggs are another fantastic source of protein and nutrients.

All foods are cooked in non-stick pans or in pans with a spray of extra-virgin olive oil.

Grains, Rice, Pasta
As with all of my other food choices I include a variety of these in our diet. Rice is nearly always a mix of brown and wild rice. If I use white rice it is always a low GI version. When I make risotto I use either arborio rice or substitute barley as a nutritional substitute. Pasta is either whole grain or gluten free (I am on a low gluten diet). We also eat quinoa, couscous....and I can't think what else. Rolled oats and steel cut oats. I LOVE oats and they are so good for you.

Dairy and alternatives
I react poorly if I eat too much dairy so I mix it up a bit using rice milk, soy and the like in baking and smoothies. I sometimes use cold green tea as a base for my smoothies too. I eat low fat dairy always and try to include 2 serves daily in the form of yoghurt, keffir (fermented milk), cheese or plain milk in my food intake.

Oils
I use small amounts of extra virgin olive oil, sometimes use coconut oil. I also get natural oils from eating avocado and nuts - once a gain a variety. I eat the nuts in their natural form, not salted.

Processed Foods
I really limit processed foods as I have reacted quite badly to certain additives at certain stages throughout my illness. I also find that I don't really need them as I use herbs, spices and variety to create flavour. It's tastier, healthier for you and significantly more affordable. I do have tinned tomatoes, legumes and fish. I also usually have a commercial indian marinade in the fridge - just been too lazy to make my own!

I NEVER eat artificial sweeteners. During my research, I read enough on them to freak me out and now consider them to be poison. I'd rather eat real sugar and simply have a smaller amount. I drink very little soft drink (perhaps 2 or 3 times per year and can only drink about a cup). It makes me tired and sore. I prefer to drink water, tea or coffee. If I want a change with my water, I add lemon or lime slices to it or even some herbs such as mint.

I also avoid high fructose corn syrup, trans fats and saturated fats.

Other than the above mentioned artificial sweeteners nothing is off limits. If I want a piece of chocolate or a packet of chips I will let myself -if it fits in with my points and if I really want it. I keep the portion small and indulge infrequently. I want to be able to eat well in the real world and not be a difficult guest or dinner companion. One meal won't kill me if it's not super healthy and I have the power to make the best choices available or even offer to bring a dish so that I have something that I know I can eat. I know for some people eating like this can derail them but for me fortunately I can just deal with it and move on. People tend to come here to eat anyway (they seem to think I'm a good cook:)), so I have pretty good control over social eating.

Hopefully this is of help to you and I haven't left too much out. Does it make sense? Do you need and example of my daily food intake or a copy of my weekly menu plan? Let me know what will be of benefit to you and I'll do my best to help. I think I still have my notes on the foods that are like hitmen for cancer or are considered to be superfoods, I can do a post on these too if you're interested.

Love to hear about how you all eat! Stay well and healthy.

Weigh in day

Hello ladies! Just a very quick post to give you a progress report. Today was weigh in day and I achieved a loss and a couple of milestones along with that. I achieved my 5kg loss (total) and reached my 5% (lost from starting weight). Woohoo!! My loss for the week was 0.9kg.

As I had lost 5kgs I thought I'd get the tape measure out again and see what a 5kg loss looks like.

Chest
Week 1 113.5cm
Current 104cm
Loss of 9.5cm

Waist
Week 1 101.5
Current 93
Loss of 8.5cm

Hips
Week 1 119cm
Current 109cm
Loss of 10cm

Total cm lost 28cm! That would probably be more if I did my legs and arms today too. That's almost a foot!!

Little happy dance.

Upcoming posts (that I may get out today). A little natter and chatter about "The Stress Eater Diet". Finally! A post on what foods I eat, my attitude towards food, how I try to make my decisions when making food choices. Oh, and a post on my weekly walk. Goodness, I'd better get typing...

Hope you are all well.

Reflections on how I got here

I've put a lot of thought into how I managed to gain 30 plus kilos. I thought about it while gaining. I thought about it while preparing myself to do something about it. I continue to think about it while putting things into action and finally losing. Fortunately all of this mental ruminating has brought me greater clarity and with greater clarity comes greater control. Contributing medical conditions and treatments aside I've come up with the following so far.

• Starting life with my husband saw my food habits change. We ate out more often, my portion sizes slowly increased (particularly if Jeff served). Foods that were seldom in my home as a single person suddenly became normal to have around as Jeff enjoyed them. I of course ate them because they were there - not lots but all of this added up. Not blaming my sweetie here, just observing!
  
• Stress - oh my, was I under a LOT of stress in the first years of our relationship - work and other life circumstances, not the relationship. Stress creates physical changes in the body, raising cortisol which creates cravings, stress eating and belly fat. Oh enter the belly fat. I'd always gained weight around my bum and boobs but suddenly I developed a belly.
  
• Around this time my mobility and ability to exercise was compromised by health issues. So, my food intake was going up and my movement was taking a monumental nosedive. I realise now that the fact that I had always been active and exercised controlled my weight. Yes, I generally ate well, but 'treats' and any transgressions weren't noticeable because I moved enough to make up for it. I also realise that I used my exercise to deal with stress in my life. Suddenly, I had lost the ability to move and my main avenue for dealing with stress, emotional upsets etc.
  
• As my health deteriorated and my fatigue grew I think that I started to eat for energy. My mind was in a fog and I remember waking from afternoon naps and eating before even fully awake. Didn't work. I was still tired and just got fatter. I was also nauseous most of the time and now remember that I used to buy boxes of Jatz biscuits or Salada and I'd nibble on them to ease my tummy. I'm sure that all of this added up too.
• As my health deteriorated so did some of my food choices. Because I was not well enough to spend 5 minutes making my usual salad for lunch, I'd have a peanut butter or vegemite sandwich. I ate like this with greater frequency and my sick body needed nutrients desperately. Maximum nutrition was essential and I didn't have the energy to deal with it all the time. Bread also made me tired which made things worse.
• Since joining Weight Watchers I realised that the oil based supplements I was taking added up to a quarter of my daily points intake. How CRAZY is that! Needless to say I've made some changes there.
  
• The "Latte Effect". Living with fatigue and burnt out adrenal glands, and a coffee loving husband what did I do.....increased my coffee intake. All my coffee is milk based so that upped my daily intake of calories too. I've made changes there too (it's been easy, I'm not addicted and have had no headaches etc as a result).

All of these little behaviours that can quite insidiously enter your life and combine with health issues to create such a huge change to your weight, your health and wellbeing. Because the majority of my food choices were good - fruits, vegetables, salads and balanced meals - I found it bemusing that I was putting on so much weight and struggling so hard with it. I think I kept looking at the fact that I didn't binge or eat large amounts of junk. Portion size changes, extra treats, less activity slip under the radar and have a big impact. I've had to learn new ways of dealing with stress and emotions that didn't rely on me getting out and going for a walk. Thank goodness I was already committed to journaling, where would I have been without that?

Do you know what has contributed to your weight gain or are you as lost as I was? Have you found that understanding gives you greater control? What do you struggle with?

I've nearly finished reading "The Stress Eater Diet" (I confess to getting sidetracked by...many other books) and will endeavour to get the review out to you over the weekend. Sorry for those who've been waiting.

Today was weigh in day. I'm down another kilo which is a total loss of 4.1 and a current weight of 86.1. Only 500grams to go and I reach my 5% goal so if all goes well I should achieve that next week. Woohoo!

Hope all is well in your world everyone. You ladies out there in Blogland are a constant source of inspiration. Thank you.

Big Day Out. Part 2.

A few hours after returning home from our Big Day Out Part 1, Jeff decided that he was going to take the dogs up to the dam for some exercise. I was still feeling good (no fatigue, yippee!), after our morning walk in the rainforest and started to consider going along for a second outing. We were both concerned about it being too much, on top of my previous walk, but in the end I decided to give my body the extra push and go. We figured if I crashed I could sit and wait for Jeff and the girls to come back.
Here the girls are on the causeway, reading all the interesting news that has been left for them to sniff up. Sophie is at left, Jess is at right with the blue collar.
We found this spot halfway through our walk and it reminded us of images we've seen of the Florida Everglades. We hope they are safe from that horrible oil spill. No chance of an oil spill here.
Here are my girls running to me. So cute. There's nothing like the total love and devotion of a dog.

We walked for about an hour in a very leisurely fashion. By the end I could feel my body becoming tight and uncomfortable, and my knees were beginning to protest. I felt good though, no fatigue whatsoever. It is now Monday morning and I still feel good. I could weep with relief! This is the longest remission I've had from fatigue in probably 9 years. I've also had the best quality energy this time around and this has enabled me to start this new part of my journey to wholeness and health. I'm hoping chronic fatigue syndrome is OVER, not just in hibernation.

I shall try not to become overconfident and do too much (as I'm known to do). Yes, I know who's reading this and what you are thinking! :) It's nice to feel a bit excited and sassy about it all though! Hopefully I walked a bit of size off my backside while I was at it.

Wishing Lynn over at Lynn's Weigh a love filled, successful recovery from surgery. We are all thinking of you and wishing you well!