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

Runner vs. Chronic Fatigue Syndrome

I take no credit whatsoever for this image. I found it on Pinterest

If you keep up with my recovery progress on Twitter, you will know I regularly log my fitness progress on the website Walk Jog Run. I have been power walking for a couple of months now, and by following the training plans on their website, I have been able to pace myself and can now walk 5k in under an hour! Then something really unexpected happened-the guys from Walk Jog Run wanted to feature me as Runner Of The Week! Click the link to see my interview with them entitled "Runner vs. Chronic Fatigue Syndrome" where I talk about my CFS recovery and how getting out in the fresh air has really helped my progress.

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

CFS Progress Review: June 2012

Once again, my diary entries get more sparse as I get better and better. Here's a summary of what's happened in June.

• While I was away on holiday I talked at length with my mum about what sorts of things are important to me now I am recovering. She was concerned that the fact I was toying with the idea of moving to Scotland would have a detrimental effect on my recovery. I had been thinking about this for some time previous to our discussion, and as well as it not being a practical idea, I wanted to save the magic of the area as a holiday destination instead of making it mundane and ordinary by turning into my permanent residence. I would still love to live by the sea though. One day...
• When I first went down with major CFS symptoms, my life literally stopped. Over the six month period of my recovery, I have been able to re-evaluate my personal priorities, and only re-introduce the things that I want in my life. I have chosen quality over quantity in many aspects, and I am finding I get a lot more out of life now. There seems to be a purpose and a meaning to many of the things I am doing that I just couldn't grasp before I was really ill.
• I have been exercising a lot more. Well, I say exercise, what I actually mean is walking, yoga and meditation. I have decided I will not return to the gym, that nature and fresh air provide all the fitness equipment I need-although I have taken ownership of an exercise bike for particularly bad weather days! I now try to walk almost every day, while keeping in a rhythm with my pacing so that I don't end up in a cycle of "boom and bust". I am also feeling the fantastic adrenaline/endorphine rush that comes with exercising out in the fresh air. I have missed that.
• My feathered friend, Jimmy the budgie passed away. Say what you like about animals, but he was with me through a very rough time with this illness, and his chirruping and funny talking made me smile even on my blackest of days. Check out my friend Julia's new blog God Is Dog Spelt Backwards to read of animals and their owner's healing stories.
• I have saved the biggest news for last. My GP has declared me now "fit for work" hooray! I will be going back on a phased return.

As mentioned earlier, I have been re-evaluating my whole life, especially more towards the latter end of my recovery. I have come up with three goals to guide me through the next six months:

1. Maintain a good state of health by applying all knowledge learned within the past twelve months.
2. Steadily increase working hours up to sixteen per week, using phased return.
3. Enjoy creative pursuits and other hobbies to enhance physical and mental wellbeing.

Only three goals, but once again focusing on quality not quantity. And those goals in themselves are quite big, if you think about all that could possibly be involved! These three items will be the focus of my blog for the rest of the year.

I shall finish with a quote from Friedrich Nietzsche, the german philosopher. Not the most concise of quotes, but it certainly resonates with me:

"But what if pleasure and pain should be so closely connected that he who wants the greatest possible amount of the one must also have the greatest possible amount of the other, that he who wants to experience the "heavenly high jubilation" must also be ready to be "sorrowful unto death"? And it is so, perhaps!"

Or, if you'd rather, in the words of Stereophonics, "You gotta go there, to come back..."

Enjoy the second half of the year folks! x

http://www.youtube.com/watch?v=m4tcRlHY-3Q 

This blog post is written

in memory of Jimmy Stickybeak the 2nd

2007-2012

Goals 1 : Deadlines 0

I'm being a bit cryptic with the title of this blog post, but the main theme is to have only one goal, and that's NO deadlines.
When you have ME/CFS the last thing you need is pressure. Pressure creates stress, and stress exacerbates ME/CFS.
Ninety nine percent of my time before I got ill was spent making lists of things to do, things I needed to buy-for example food shopping-or places I needed to go. And then doing ALL those things in very short spaces of time.

I no longer have the energy to do all these things, and on bad days it's as hard to simply make food for myself, as it is to walk to the shops on a relatively good day.
I was a good few months into my recovery before I decided that the solution to a large part of my previous lifestyle stresses was to eliminate deadlines from my life.
For example if my mum asked me if I wanted to go out for the day, the day before I would have to tell her "I'll have to see how I feel in the morning", whereas previously it had always been me telling her where I needed to go and what I wanted to do.

For a perfectionist personality like myself, eliminating deadlines has been hard, and has meant a couple of major lifestyle changes which have taken some coming to terms with. On the whole though, as I have come to accept my new way of life, I have become more content with living in the moment, one day at a time.

If you live with chronic illness, how do you go about setting goals for yourself, or structuring your days? I'd love to hear from you in the comments.