New Year 2014: Looking Ahead and Leaving The Past in The Past

The past few weeks I've been thinking a lot about how much my health has improved over the last 18 months, and how I've continued to learn to manage my symptoms to keep me "on a level" as it were. This involves pacing, eating right and getting good sleep. Finding balance out lives is something we all strive to do, whether or not we are "spoonies". I have come to the conclusion that I don't want my symptoms to define me anymore. Yes, they will always be there, but I want to get out and live my life, I'll be 31 in January and I feel like I am missing out on life experiences, however small. I have a list of things I want to do and places I want to visit, and I also plan to step out of my comfort zone a bit more in 2014 and confront my social anxiety, whilst also being kind to myself and not overdoing it.

So what does all this mean for this blog? I want to share more of my daily "spoonie" life with you, and stop getting bogged down with lengthy posts about how chronic my illness is. I tweeted a picture the other night of my "weekly cook-up" which is an exercise I do about once a week to make sure my freezer is stocked up with easy to prepare food. I don't have energy to waste on doing this daily, so I do it in a batch.

So I could make a little post about that. Practical stuff, knowledge and tips that I can pass on. Basically what I intended this blog to be about in the first place.

I'm rambling. What I'm trying to say is that, whilst I will always have my symptoms, they don't define who I am, and they shouldn't for you either. We are all human underneath, and we are more than just our illnesses.

I will continue to refer to myself as a "spoonie" but only in the correct context. I will continue to pace, eat mindfully and keep good sleep hygiene, just as someone who has asthma continues to use their inhaler-as a tool to manage symptoms. Nothing more dramatic than that.

This is my life and this is who I am, and I intend to embrace that in 2014.

Happy New Year everybody!

CFS Progress Review: One Year On...

A year ago today I phoned in sick to work and didn't go back for seven months. Reading back over my blog posts the time seems to have flown by. I am going to try and condense the last 12 months into a concise blog post that sums up the best and worst of the last year.

Starting with my 2012 Manifesto in January:

Look at how I can change aspects of my lifestyle to benefit my physical and emotional health
Make time to develop my art, craft and vintage business(es!)

Learn to trust the process of life and all it's inevitable unpredictability

One Thing At A Time
Stop doing what I think others/society/”they” want me to do and start doing what makes ME happy and healthy.

In the main I have stuck to this throughout. After completing a course of Cognitive Behavioural Therapy (CBT) I have a much more methodical and reasoned approach towards any problems that crop up. I regularly practise meditation to help clam my mind and body, and this helps me go about me life in a calm and relaxed yet alert and mindful manner. My Buddhist beliefs also reinforce many of these factors. In February my anti-depressants had started to have an effect and I was having more reasoned, rational, constructive and positive thought patterns.

February: Starting simply with nutrition and diet I adopted the practise of drinking four pints of filtered water a day. Recently I have lapsed with this, and the process of re-reading my posts has reminded me how important it is, so I am back on the water wagon again! A frozen lemon wedge adds a lovely cool zing too! I quickly realised my cow's milk intolerance had returned from childhood, and as we know, CFS has lots of links with candida, thrush and yeast infections so I discovered I was intolerant to yeast too.
I started doing my food shopping online. This gave me back a sense of independence whilst also enabling me to conserve energy. I think this simple idea is one of the best inventions of recent times, and I am so grateful to the friendly Sainsbury's drivers-I never had any problems with my orders and would highly recommend the service.
I quickly realised that my energy levels were directly related to the food I was eating. I now focus on natural foods, minimal animal products, and freshly cooked produce whenever possible; although if I am having a low energy day I do not berate myself for putting a frozen pizza in the oven, and I do allow myself treats, but my body will not hesitate to tell me if I am not eating well!
Fascinating fact: In February, a “good day” meant I could do 45 minutes of light activity before I had to lie down and rest completely for 15 minutes. Incredible to think that I went from that, to presently working four 4 hour shifts per week!

March: By March I was beginning to feel better, but I knew the key to a great recovery was PACING. I cannot stress this enough. I hated the idea at first, and even though I had read loads and loads about it, I still wasn't sure. But I gave it a go, and started making notes of every little thing I did throughout the day, what time I did it and for how long. This gave me a really clear idea of how I was proportioning my time, how productive I was being and where I could conserve energy by doing something called “switching/pacing” (give it a Google!)
As well as being productive throughout the day, I knew I had to address my sleep hygiene and my bedtime routine. I downloaded some relaxation mp3's, which I still use (they're amazing), and made sure I kept a regular bedtime and waking routine. I was getting to the point where I could be up and dressed for 9am, even though I might not do anything the rest of the day!
I was also able to incorporate a bit more exercise into my daily activities, even if it was just walking outside for a few minutes. Not only was this a huge step physically, it was also a huge mountain to climb for me within the psychological aspect of my recovery. I hated going outside as I feared people would see me and think I was “skiving” from work, as to all intents and purposes I looked well (as we know this happens with ME/CFS), even though I still felt physically and mentally exhausted the majority of the time. But getting out and about, even for short periods, helped boost my confidence and lessen my depressive symptoms massively.

April & May:

“When you have ME/CFS the last thing you need is pressure. Pressure creates stress, and stress exacerbates ME/CFS.”

By April I was cycling 2 minutes a day on my exercise bike, and getting out for 6 minute walks when I felt up to it. I was keeping up with all the goals I had set myself so far, like drinking plenty of water, getting healthy, natural foods inside me, pacing, and having a good sleep routine. In May I began my course of CBT. Re-reading my blog posts now I can see that around this period of time, my writing became much more cohesive, upbeat and positive. I really couldn't recognise myself in the tone of the early posts.

June: In June I saw my GP for the last time, as she declared me fit for work! I had actually asked her to do this as I had been feeling much much better for quite a while, and was actually now beginning to get frustrated sitting at home all day. I wanted something to do. I wanted my life to begin again.

I came up with a three-point manifesto to take me through the coming months:

Maintain a good state of health by applying all knowledge learned within the past twelve months.

Steadily increase working hours up to sixteen per week, using phased return.

Enjoy creative pursuits and other hobbies to enhance physical and mental well-being.

A couple of weeks before I returned to work, my beloved feathered friend, Jimmy the budgie, passed away. I was so sad to lose him, but I somehow knew that he knew he had helped me through the most difficult time of my life. He was a fluffy old bird, and it was time for him to go. I will never forget his amusing chattering, singing and squawking! He now regularly sends a whole menagerie of different birds to my back garden where they feast on nuts, seeds and fat balls!

July & August: As I was back at work, I wanted to make sure I kept my immune system topped up. To this day (touch wood) I have not yet caught one cold or bug that's gone round at work, while colleagues have been smothered! I am obviously feeding and treating my body correctly now.

I decided to go vegetarian for a month, and this increased my energy levels noticeably. I do eat meat now, but I eat generally with a much more mindful approach, and really think about what I am consuming and why.

I finished my course of CBT in August, my therapist was extremely happy with the improvements I had made. I review everything monthly now, just to refresh where I am at emotionally, and to notice if there is anything in my life I am finding difficult. I can then go back and apply the CBT principles to help me overcome this.

September:

Time for another manifesto:

1) I am single and I embrace this freedom and independence
2) I have no interest in having children and this is fine
3) Some people might see my job as "boring" or "dead end", but I find it fulfilling and challenging
4) I am happy for making art to be my hobby or second income, I much prefer this than striving to achieve in an over-saturated industry
5) Taking time to relax and take care of myself is just as important as wanting to actively achieve any goal I may set myself 

I believe that full recovery from ME/CFS is not possible until you accept that your lifestyle and every aspect of it must change. You must want this change, be ready for it physically and emotionally, and be happy with it.

October & November: By now I seem to have developed a new rhythm in my life. One which is beneficial and fulfilling to my mental and physical health. I try to apply mindfulness to my daily activities, be they at work or at home, and be more self-aware. I listen to my body more by applying meditation techniques, and communicate with my body and my self. I have only recently started being creative again, and creating art that I really really like, instead of striving to appeal to the masses. I look forward with enthusiasm to my free time, as I have lots of exciting projects that I am in the midst of. I really enjoy cooking healthy meals and searching out new recipes, and I enjoy getting out in the fresh air and power walking-recently I walked 5k in under an hour!

December: So here I am, one year on. I hate getting philosophical or sentimental, especially when I know I am publishing this for the entire internet to read! But this time last year I had a raging sore throat, a cold that wouldn't go, and was so physically tired I had to drag myself up the stairs on all fours to use the bathroom. I was in a very very very black place come 23^rd December, and was searching for all sorts of things on the internet that one should never have to read. I wouldn't wish what I have been through in the past 12 months on anyone, anywhere, ever, and I think it's high time the authorities concerned started taking this illness much more seriously.

If my blog has helped only one person change one thing about their ME/CFS affected life that improves it, then I have done what I set out to do 12 months ago.

I wish everyone who is suffering to whatever degree, the very best for the future. If you know of anyone who has this illness please don't laugh it off or make light of it, be there for the person and help them if you can.

Thank you all so very much for reading.

This blog post is written in memory of my amazing Grandma, Bernadette Mawdsley,

who passed away peacefully in her sleep on Thursday 22^nd November at the grand old age of 90.

Rest in Peace Grandma, night night your God Bless xxx

CFS Progress Review: October 2012

I'm a bit late publishing this. I actually wasn't going to blog at all this month, simply becasue there's not actually that much new for me to tell you right now. I am keeping up with my daily practices of eating well, staying hydrated, working mindfully and exercising, plus a myriad of other things that I have mentioned previously in more detail. Nothing is perfect all the time, I don't eat right every day for example, but I know when my body needs something as it just tells me. I feel very "tuned in" now and that helps me to combat any "under the weather" feelings I might have. My body also tells me in no uncertain terms when it's had enough and it's time for me to rest-very important!

I am taking some time off work the next couple of weeks. I plan to use the time to be highly creative, and also focus on my self care. I am planning to spend a lot of the time in silence, or with peaceful music in the background, and live simply, leaving the hustle and bustle of everyday life behind, at least for a few days. I am hoping to be able to have a few 24 hour periods of digital sabbaticals too-that means no internet! I tried this last Monday and read an entire book-lovely!

As I am writing this in November, the end of this month and the beginning of December brings a lot of CFS related milestones along for me. I will be blogging about this in more detail next time, that post might just be a tad longer than this one!

Take care for now :) x

M.E/C.F.S and Nutrition

Let Thy Food Be Thy Medicine - JayHell

First of all, please, please, PLEASE don't mistake this post for medical advice. Although I hope to offer advice and help in my posts, the best thing for you to do to help your recovery is to see a good doctor. That's what I did and it's a key reason I have recovered so well. The content of this blog is based purely on personal experience, as we all know everyone's experience of M.E/C.F.S is different, as are their experiences of recovery strategies. Okay, are we all clear? Good.

As you will know if you are a regular reader, or Twitter/Facebook follower, I have currently completed 30 days of vegetarianism. I had toyed with this idea for a long time, even before I got ill, and once I heard and talked with my friend Julia's juicing and eating/change of diet exploits, I became even more inspired. Julia herself has suffered with M.E, and now considers herself fully recovered. She told me that the key to her recovery was tackling her diet. I decided that trying vegetarianism for a month wouldn't do me any harm.

Hydration:

I was already drinking around 4 pints of water a day. Good hydration is a basic thing and extremely important, you might think about investing in a water filter. I find that if I don't drink at least three pints of water in a day, my brain fog comes back immediately, my aches and pains (which admittedly are minimal now) are exacerbated, and I get a horrid tension/pressure headache. To drink more was a basic rule which I strictly adhered to during the first few months of my recovery, and it quickly became a habit that has now become the norm for me.

Mindful eating:

Personally, I'm not into the idea of elimination diets. Of course, if you have a severe food allergy, perhaps the best thing to do is to go and speak to a professional. But I knew I had been born intolerant to cow's milk, and these symptoms returned in my adult life; also I had always been suspicious of a yeast allergy because of my candida symptoms. So I simply stopped eating things with cow's milk and yeast in them.
The key for me was to be mindful about the food I was consuming and vegetarianism really brought this home to me. I had to think about the food I was preparing, and how I could make a filling, tasty meal without absent-mindedly throwing together a couple of chops and some steamed vegetables. There's nothing wrong with that in itself, but what if the meat has been processed, or pumped full of chemicals? Has the animal had a stressful life and even worse, a stressful death? Are the vegetables processed or freshy prepared?

I watched the River Cottage series "Veg Every Day", and a lot of what Hugh Fearnley-Whittingstall said in the programmes made a lot of sense to me. Inspired by Hugh's words, from now on I will try to apply the following in my eating: animal flesh is the most precious of food resources, as another living being has given it's life so that we can be fed, and ultimately carry on living ourselves. So, if you are going to consume animals, perhaps it is a good idea to make sure you know the source of your meat and fish, use it as a "treat" meal, or a special occasion, and in general just be mindful of everything you are consuming. Don't feel guilty about eating things like chocolate-just know that you are, and what the consequences may be if you eat too much!

Being a "veggie" with M.E:

I haven't told many people about the last 30 days. I rarely eat out. I have no family or dependents to cook for. Perhaps you think I've had it easy. But remember I am recovering from M.E, and I still get very tired from time to time, and my body still lets me down occasionally, both physically and mentally. I have thought about little else other than food in the last month (it doesn't help that I work in a supermarket) and how my diet affects my health. Cooking fresh food every day, thinking about meals, and food shopping takes effort. Adapting to a new diet takes mental strength. But after a month, I really don't feel like I'm craving a steak or a sausage sandwich. We're more than half way through the day and although I've had plenty of opportunity to make a fried breakfast or add tuna fish to my lunchtime pasta, I've chosen not to; and this makes me wonder how much of a shift has really been made in my outlook on food and diet. I'm just not that enthralled by meat or fish any more.

I'm not saying in this post that anyone should become vegetarian, or do what I did, or that if you do you will suddenly recover from M.E.
People still ask me if I am "better" now. I tell them I am getting there. Some days I wake up and feel brilliant and full of energy, some days not so much. The difference being I can tell the difference between one day and the next, and I whether I have the energy or not, I ALWAYS get out of bed. I didn't do that nine months ago.

I repeat once again, I am not telling you what to to with your life, I am not offering medical advice, I am just offering an honest point of view. I will say this though. I STRONGLY believe that looking into your diet can help you tremendously in your recovery. I say this because it has definitely helped me and my friend Julia, and I want to share my experiences in order to offer help and support to others.

Also, I lost 6 pounds doing this! Although (yes, another disclaimer) this is NOT a diet plan!!!

Get inspired and have a look at some of the things I cooked myself in the past 30 days (includes cakes!)

Things I Have Eaten

Constructive comments are appreciated.

Thanks for reading, sorry it was a long one!

Jen :) x

CFS Progress Review: August 2012

Another month, another few weeks of learning about myself and my health.

As I have progressed in my recovery I have become more and more aware of what my body needs, and my mind and body are far more in tune now than they were even six months ago. I have discovered that one very useful way of getting your mind and body in tune is to pay attention to what you are eating.

I had been toying with the idea of going vegetarian for some months; and I finally decided to give it a go. I initially decided that I would try it for seven days, but I am now on day 20, and plan to go a full 30 days before I consume animal flesh again. Click this think to see a selection of things I have been eating.

For me, eating meat is a 29 year old habit, and whilst I haven't found the abstinence hard, I have struggled on occasion knowing what to make, or thinking of something interesting to do with my vegetables, pulses and legumes. I caught up with Hugh Fearnley Whittingstall's Veg Every Day series on Channel 4, and this helped inspired me to make many meals.

Whilst planning meals, and cooking mindully, I became aware that I really was paying so much more attention to what I was eating than ever before, and this is what has helped me stay in tune with my body's needs. Instead of just mindlessly sticking a couple of chops under the grill, and steaming some veg, I have had to actively THINK about what I am going to eat, how I am going to cook it, and even what I am going to make with the leftovers!

I have kept on juicing too, but if I haven't felt like having one, I haven't! And more importantly I have stopped berating myself for this too. I have become far more relaxed around food, and this has carried through into my everyday life.

So how does this fit into the grand scheme of CFS recovery? Well, I think that if I can apply mindfulness to a simple yet essential task such as nourishing my body, surely I can learn to apply it when I nourish my mind? Instead of thinking about things I "should" be doing, I can take a different approach and apply my mindful tools to think "how is it best for me to approach this challenge?" instead of rushing (both mentally and physically) to get things done as I did in the past, and contributing to what was my eventual illness crisis point.

Another milestone has been reached this month. I have finished my course of CBT (cognitive behavioural therapy). I know this approach causes a lot of controversy with CFS sufferers, and I agree to a point: in my opinion there is little to be gained from attending CBT unless you are already well on the way to recovery, as I was. If you are very unwell every day, and have severe ME/CFS symptoms, I find it hard to understand how CBT at this stage would be helpful. But that's just my two 'pennorth!

In summary, I have reached some kind of an epiphany as far as long term recovery goes-you definitley ARE what you eat! My mood has improved, so much that I have felt able to cut down my dosage of homeopathic anti depressants, and my sugar/fat/carb cravings have all but disappeared!

I had a few late nights (well, 10pm is late for me!) this week, and I have felt like I've been playing catch up with my sleep and energy levels. It's not all plain sailing all the time, but I am enjoying the journey, which is more than can be said for twelve months ago, even six months ago. My whole attitude has changed. I have so many tools at my disposal now, to enable me to carry this positive attitude through life with me for a very long time.

I hope this blog helps any fellow CFS recoverers out there!

Look out for my special "ME/CFS and Nutrition" post coming soon when I finish my 30 Days of Vegetarianism"!

Take care and look after yourselves :) x