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!

It's Okay To Be Happy With A Calm Life : Quote Wall Art

When I first came across this quote I found it very reassuring and comforting, and I now use it as a sort of mantra in my everyday life.
Some people like to go out and socialise a lot, with ME/CFS I find that hard, I also don't enjoy it very much because of my anxiety. There are certain familiar social situations in which I am comfortable, but not very many. My small amount of disposable income means I can rarely take trips out by myself either.
However, I don't want to come across as self-pitying, and this is the whole point of the art work, the fact that "it's okay to be happy with a calm life". I am perfectly happy sitting at home listening to the radio and knitting, absorbing myself in a good book, or even making art!
We don't all have to be social butterflies, some of us are quiet types and some of us are louder and bolder and that wide variety is what makes the world a lovely place.

When us spoonies are frustrated that we can't do things, or annoyed by having to pace, this quote reminds us that it's okay to rest, and we know it will benefit us in the long run, we have nothing to feel guilty about.

How I see my ME/CFS started

Before I post the main details, I must explain that what follows is a short personal story of how I see my ME/CFS came about. The circumstances are personal to me, and not all cases of ME/CFS come about in the same way. The spectrum of cause and symptoms are so varied, and it is essential to bear this in mind. Disclaimer out of the way, then...

I'll begin by quoting Louise Hay. She says that "stress and worry creates feelings of guilt, fear, criticism and resentment". In the case of my ME/CFS, this started a vicious circle which led to tiredness, which further developed into the following symptoms: muscle fatigue, fibromyalgia, headaches, cognitive dysfunction, broken sleep, lack of appetite, hypersomnia, leaky gut and a depleted immune system, emotional stress, anxiety and depression. Left unchecked for a long period of time (around ten years in my case), led also to depression, and ultimately chronic fatigue (which is a myriad of the above symptoms). "Chronic" meaning long term, which then exacerbates the stress and worry, this state becomes normal for the body and mind, and therefore the process starts all over again hence the vicious circle analogy.
I believe that the only way to heal from ME/CFS at present is to take on an entire change of lifestyle. Not only do you have to treat the symptoms, you also have to treat the cause of the symptoms, otherwise you will just keep going round in the vicious circle.

The above is basically a journal extract from around 2 years ago, when I was still trying to get my head around what was wrong with me, and I wrote it in the early hours of the morning whilst reading "You Can Heal Your Life" by Louise Hay, a book recommended to me by a recovered ME/CFS sufferer. (Yes, recovered! She exists! Here!) I was trying to rationalise my state of health, and this was the most comprehensive description I could come up with at the time. As I've said, I believe you must discover the cause of your symptoms, whether they be physical, mental or even spiritual, before you can truly make changes and heal.

Hey, it might sound preachy and profound, but it's just my humble opinion.

How I came to be diagnosed with M.E/C.F.S

What follows is a very short account of how I came to be diagnosed with M.E/C.F.S. I feel that now is the right time to tell this story, it also helps to put the rest of my blog into a bit of context.

In July 2011 I finally decided that after ten years, it was about time I did something about the fact that I was "tired all the time". I was sleeping most of the day on my days off from work, just so that I could muster up enough energy to drag myself through the next block of 8 hour shifts.

I decided to start with the basics, so I just typed the following simple sentence into Google: "Why am I so tired all the time?" I got a heap of results all saying similar things including over-work, stress (in it's myriad forms), and then terms such as "under-active thyroid", "anaemia", coupled with the words "chronic" and "fatigue".

I was definitely chronically fatigued, but did I actually have M.E/C.F.S? More so did I want to admit this to myself? A week or so later my very understanding and empathetic GP told me that after doing a comprehensive set of blood tests that yes, that was the most likely explanation for my condition (basically it was a diagnosis of exclusion, i.e it couldn't clearly be anything else), but a neurologist would be able to confirm the diagnosis.

My GP suggested that I have some time off work there and then, but I was adamant that I would be okay and I would fight it (literally it turned out) and I would be healed by the time I was 30. This gave me 18 months to "fix" myself.

For the next six months I researched myalgic encephalomyletis, or chronic fatigue syndrome. I read a lot of books about the illness and referenced many things on the internet. I kept going to work. I felt that if I ignored the symptoms (!!!) to a certain extent, rested as much as possible on my days off, made small changes to my diet, kept up with my Perrin and acupuncture appointments, as well as changing my duties and responsibilities in my job, that would be enough to overcome the illness. It wasn't.

By November 2011 I was almost permanently suffering with a heavy cold and sinus infection, which eventually worked it's way into my digestive system so I wasn't eating properly either. I was called for jury duty, and this put extra stress on my system both physically and emotionally. No sooner was that over than I went back to work, thinking that if I could just get through the busy Christmas period (I work in retail) that I could start afresh in the new year.

I managed one shift back at work after jury duty, and then got REALLY sick, went back to the GP, who basically said (in the nicest way possible) "I told you so", and signed me off for a month.

She also recommended I start a course of anti-depressants, as I was showing almost all the symptoms of depression. I decided to take the herbal remedy route, one of the main reasons being that I cannot swallow pills, but there were myriad factors involved. This was a completely personal decision, and without getting into the politics and statistics about it, all I know is that if I hadn't started taking them, I would not be typing this now.

As I have stated before, this blog is NOT medical advice. It is a collection of tips and advice, written by someone who has personal experience of the condition known as ME/CFS. It is filled with positive, inspiring and motivational words that have helped me overcome my symptoms of ME/CFS. They may or may not work for you, but I need to share them because I want to help others.

My Recovery Journey over six months on...

I have decided it's time to resurrect this blog, under a slightly different theme. From now on my focus will be on blogging about how to focus on staying well after going into remission from ME/CFS, which is where I see myself now.

I have given the blog a new look, and made it easier to be viewed on phones for those of you who find it difficult to access a computer.

I have had a long time to reflect on how I want to share my knowledge and personal experience of having ME/CFS and have come up with a number of ways to do this, including making art and using Twitter as a platform for fellow spoonies to connect. You can even follow me if you want!

There will be two future posts, one telling a (very short) background story of how I came to be diagnosed with ME/CFS, and another about how I see it started. From then on I want to focus on the positives and the future, and share my tips and experiences to help others.

I hope to re-kindle some interest in this blog, more importantly, if I can help just one person that would be enough for me.

I hope to see you here again soon.

Please leave a comment if you would like to see me blog about a particular aspect of recovery and I will do my best to post something helpful :)

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

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

CFS Progress Review: July 2012

I have been thinking during the past couple of days, how I am going to approach writing this blog post. Taking my time and being mindful over things seems to be the new trend in my life right now. Previously I would just rush into doing things without considering the ramifications, and look where it got me!

While making notes for this post, I referred back to the long-term goals I'd set myself in June. The first one being to incorporate everything that helped my initial recovery into my daily life; a key part of this is meditation. I try to practise most days, and my body often lets me know when it's time to have a few quiet moments. But I also have no strict regime, as I feel this restricts my personal lifestyle.

I am slowly getting back into some sort of fitness routine. I try and go for a walk daily, around one mile. Being out in the fresh air is lovely, and can help clear mild headaches and brain fog, especially if I find I have been sat in front of the laptop for a little too long! The best time I find is early morning, before the world has woken up-although this doesn't happen every day, sometimes I am more than happy to have a lie in-more differences from my previous lifestyle!

I would like to empahsise that while I am working again, it is NOT full time, it's precisely eight hours a week split in to two four hour shifts. I still have symptoms of M.E/C.F.S, although they are mild now. There are some days where I don't feel any symptoms at all, but I do still get post-exertional malaise. Things aren't perfect, I still have to pace and rest regularly. It also helps that I have returned to many staff and management changes at work, and a more positive working atmosphere. It's like walking into a brand new job!

Another key aspect of my symptom management comes from diet. After talking to my friend Jules Dolly, and reading her blog, especially her posts about juicing, I decided that constantly turning to junk food for a quick sugar rush was not the way forward. By doing this I found I was slipping back into aspects of my old lifestyle that I wasn't happy about. I haven't made radical changes like Julia did, but I have started to incorporate homemade fruit and vegetable juices into my daily diet. After only three days I can already start to feel changes for the better in my body.

I booked myself a long overdue massage. My therapist told me she found no major problems with my joints or muscles (HOORAY!) but that the entire right sideof my body seemed more tense than the left side; we mulled over a few things as to what it could be, but in the end she concluded that it might just be where the tension seems to gather in my body-in some people it collects in shoulders and neck, for example. She recommended I bathe in Epsom Salts (available cheaply from good hardware stores). They contain magnesium sulphate, and two tablespoons added to a very warm bath can help relax muscles, draw toxins from the body and sedate the central nervous system. So a perfect combination along with the homemade bath melts I had bought from Folksy; and let me tell you it's DEEPLY relaxing! Best bath ever-you can keep your Radox -from now on, this is the way forward!

I am currently working on some brainstorming/vision boards to help me decide what I want to do/achieve with the next six months of my life. Of course I will keep you updated on here; I really hope this blog is an inspiration and encouragement to those who may read it.

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

CFS Progress Review: May 2012

As you know, I take most of the content for these posts from my diary entries. These have been getting more and more scarce as I have got better. Having said that, here is a short list of things I have learned about my progress over the last month:

• As I am progressing in my recovery, I am finding it easier to focus on the broader aspects of my life, and as a result of this experience, I have found that my priorities in life have shifted. I am also beginning to grow in confidence each day now.
• I find that my cognitive ability has improved to the point where I can methodically work through a problem, come up with a solution and then act on it (for example my personal finances).
• Beginning a course of Cognitive Behavioural Therapy (referred by my GP) is helping me to deal with stress and confidence in a constructive and positive way.
• As my ME/CFS symptoms begin to go into remission, I am starting to focus on the future, and what changes I would like to make to my lifestyle to ensure I never have to suffer this condition at it's worst ever again.

Well, I told you it was short and sweet, but hopefully reading these entries gives you a glance into how I have managed to progress so far over the past few months. I hope I can inspire others to do the same.

Enjoy the long bank holiday everyone!

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.

CFS Progress Review: March 2012

Here's my progress review for March. I'd love to know if any of you can relate to it. As usual, it's a list of short statements about what I've learned about myself and the illness over the past month.

-PACING, PACING, PACING

-Acceptance is the first stage on the road to true recovery (honest)

-Fresh air is much better for relaxing than “screen time” (e.g with the laptop)

-Relaxation mp3s: they do exactly what it says on the tin (good ones anyway!)

-Living in the moment is more productive than worrying about the past or the future

-THERE IS NO REASON FOR ME TO FEEL GUILTY I HAVE DONE NOTHING WRONG

-Having a good bedtime/night-time routine is just as important as pacing throughout the day

-Water decreases the need for painkillers

-Perhaps the fact that my diary entries are shorter means there's less troubling me

-A change is as good as a rest (although slightly more tiring!)

-It's called “pain relief” for a reason!

-Starting a paleolithic diet made me realise you truly are what you eat (10 days in now...)

My wonderful GP said to me only last week “I know you have the determination and courage to get through this”. I feel so lucky and blessed to have her faith in me. I have had lots of support from family and friends as well, I know some of you aren't as lucky, and I hope my little tid-bits are of some comfort and hope to you in hard times :)

Onwards and upwards, as they say!

Art Studio Makeover: Creative CFS Recovery

Have you ever heard the phrase, "my head's a shed"? In my current situation, use it a lot. But instead of it being a metaphor, today I am blogging about a real "shed" which, when I'd tidied it all, actually helped me to think a lot more clearly about where I want my future with (and hopefully after) CFS/ME to take me. And in time-honoured fashion, here are the classic "before" and "after" photographs.

The full photo-journal of my craft room makeover can be found on my Flickr.

Now I have a tidy space in which to create. I can now motivate myself to do little bits here and there and in being creative, enhance my recovery process.

Each day I meet more creative people who have the same illness as me; it feels good to know I am not alone and there are people out there who really are EXACTLY like me.

CFS Progress Review: January 2012

A couple of nights ago I read through all my diary entries for January, and made some notes about the helpful things I have found out about managing my CFS symptoms. Since starting my course of homeopathic anti-depressants I have found that I can think about things in a much more constructive and positive way. I still have low moods and bad days, but I am learning to cope with them better now. Below is a list of statements and words which sums up January for me recovering from CFS:

 

• drink plenty of water

• eat less bread and wheat-based products

• consume small meals, little and often or whenever hungry

• eat a high protein diet

• mindfully participate in daily enjoyable/fulfilling activities that are JUST FOR ME

• apply the Four Noble Truths as practised in Buddhism

• realise that I have been going through a process of grief and mourning

• learning to listen to my body's subtle messages

• practising mindful and guided mediations daily

• cherry-picking advice from self-help books and finding what works for me personally

• remembering that the onset of flu-like aches and pains means it's time to STOP whatever I am doing IMMEDIATELY and REST COMPLETELY

• not spending too long sitting slouched in front of my laptop

• having courage

• taking things ONE DAY AT A TIME, one thing at a time, sometimes even one minute at a time...

 

This is what I have found has benefited me personally. I am not suggesting that this approach is a cure all, some, many or few of these practises or approaches may or may not work for you. CFS/ME can be brought on by a myriad of events/illnesses etc. so who is to say there is going to be one satisfactory remedy for us all? We are all individuals and will have our own individual way of dealing with and treating our symptoms effectively to suit us.

Once thing I can say with much certainty is that I definitely now see myself as a recoverer, NOT a sufferer.