Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Tuesday, 31 December 2013

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!

Wednesday, 21 August 2013

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.

Saturday, 17 August 2013

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.


Saturday, 10 August 2013

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.

Sunday, 28 July 2013

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 :)

Friday, 28 September 2012

CFS Progress Review: September 2012

This month: Mortality, Priority and Moving Forward

Some of the readers of this blog (however few or many there may be) might laugh at me for contemplating my mortality at 29. But how many of you who are older did the same at my age?

I am single, have no desire for children, and certainly see no joy in trying to climb either a property or career ladder right now.

Although at one time in my life I did see value in some of these things.

Having M.E has changed me (for the better).

I have spent much of the last month and the last week in particular, sitting with my thoughts and moral beliefs and trying to get comfortable with them. If I found myself becoming uncomfortable, I asked myself why that was so. And (after a whole lot of soul searching) I came to some pleasing conclusions:

1) I am single and I embrace this freedom and indepence
2) I have no interest in having children
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 acheive 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 don't want to go into detail about any of these points, as they are are private and personal to me. They could be thought of as my "big" life choices/beliefs. Although I have given you a brief outline of them for a reason...

I believe that full recovery is not possible until you accept that your lifestyle and every aspect of it must change. Thinking that you want to get back to how things were before you were ill is pointless-when you think about it, how much were you enjoying or getting out of life before you were ill??? For me my life consisted of struggling to keep up with my work, my social life and spending ALL of my days off sleeping.  Who wants that lifestyle back again?

However, making change is not easy, which is why I've stuggled so much emotionally the past month. Letting go of the past and embracing the future is hard work. The points listed above could well be thought of in opposite terms twelve months ago; but now they are as they are, and reading them excites me and makes me happy and content. And that, really, is all we want out of life, isn't it?

Friday, 31 August 2012

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

Saturday, 30 June 2012

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


This blog post is written
in memory of Jimmy Stickybeak the 2nd
2007-2012

Wednesday, 30 May 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!

Monday, 21 May 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.

Thursday, 5 April 2012

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!

Sunday, 4 March 2012

CFS Progress Review: February 2012

I have been reading back through my diary for February, and as I did for the previous month, here's a list of statements and thoughts about my progress:

-paying attention to my body's natural circadian rhythms really helps me with my pacing

-buying my food shopping online is a much more effective use of time and energy than having to drag myself around a supermarket (this isn't even possible!)

-I have started to look at little things in my life differently; I feel I am coming to a state of acceptance with my current state of health and how it effects my life on a daily basis

-”baby steps” forward are still steps forward

-it still surprises me how my energy levels are so directly connected to the type and amounts of food I eat, and also the frequency I eat. I am planning to look at this in more detail in the coming weeks.

-after trying many many recovery techniques, I have found that pacing is the only technique that truly has any benefit for me, and in which I can see a marked difference in my energy levels, however incremental they may be.

-Taking a St John's Wort complex has had a positive effect on lessening my depressive moodswings. I still get them, but they are not as severe and don't last as long.

-I still get frustrated that I can't live my life the way I did previously, but I do think that in a lot of ways this is a good thing.

-Through mindful meditation and regular rest periods throughout the day, I am learning to live more in my mind and less in my body. I am also able to recognise the signs of exhaustion more easily, and am able to do something about this without my symptoms getting too bad too quickly.

-I am learning to focus on the things I am able to do-however small-rather than the things I can no longer do, or perhaps won't be able to for a while

-At night I have lots of dreams about moving away from my old way of life or my old way of thinking. It is obvious that my subconscious is trying to tell me something.

-Being in unfamiliar places (e.g anywhere that is not my home or my mum's house) makes me extremely severely fatigued, sick, shaky and nauseous extremely quickly. A reminder that I am not recovering as quickly as I sometimes think I am.

-I have made a lot of friends in the creative community who are living with similar conditions. I find this comforting and it's good to know there are other people out there with similar interests who know exactly what I'm going through on a daily basis.

-On a good day I can do 45 minutes activity before I have 15 minutes complete rest (no radio, tv etc). On a bad day the activity level dips to 10 minutes with an hour rest in between. Talk about a fluctuating illness!

-Drinking 4 pints of filtered water a day seems to boost my energy levels, lessen my nerve pains and has meant I have not had painkillers for 5 days in a row now.

I'll say again, these things aren't cures-what's right for me may not be right for you, but I hope that me writing about my own personal journey of recovery will at least help and inspire you and others in recovery.

Jen x :)

Monday, 27 February 2012

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.

ImageImage

Friday, 3 February 2012

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.

Wednesday, 25 January 2012

It's All About The Joy

I would like to bring your attention to what, in my personal opinion, is the best book ever written about  CFS/ME. It is written by a lovely lady called Diane Kerner, and the book is called "My Own Medicine: the Process of Recovery from Chronic Illness" .

I have read an awful lot of information on the internet, and in books over the last few months, as I tried to make sense of my illness. Ninety percent of the literature that I have read is all about "coping" and "learning to live with it"; okay, I understand that approach to a degree, but I had a life BEFORE  I was diagnosed, and yes, perhaps the CFS has come along to teach me that my previous lifestyle was damaging my health, but it doesn't mean I can't ever reclaim my life back. Perhaps even in a better way.

I was so moved by the book, I decided to contact Diane personally, to let her know she had been able to help someone so profoundly. Here is an extract from the email reply I received:
"Thank you for your wonderful letter, Jen. I'm so happy you took the time to write. That is precious. I was just thinking this morning that I want to look for more ways to help others and your e-mail is a reminder that I am helping even when I don't realize it. I'm so happy to read that you found some validation in my words and especially latched on to the joy factor. It's something that is easily overlooked as many just don't equate illness and joy as possibly living together.

You know, I did write that book because I had the same experience as you. No one was talking about life and healing. It was all coping. No hope anywhere. No map. Plus, the way of coping was tedious and time-consuming - a lot to ask of someone being drowned by fatigue.

I have a blog as well at http://whats2love.blogspot.com/. It's purpose is to remind people to take time to see the beauty in the everyday, to rekindle the magic and wonder they carried with them as children and bring it into their present. It's all about the joy."

I guess the last sentence says it all. It's all about the joy. Please try and remember that, even when you have a bad day. I hope if you are reading this blog you are finding it uplifting and optimistic and joyful.

I hope to add posts along a similar vein in the future.

And I will finish by saying a big thank you to Diane for letting me feature her on my little blog :) x

Click here to visit Diane Kerner's very helpful and inspiring website


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Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Tuesday, 31 December 2013

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!

Wednesday, 21 August 2013

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.

Saturday, 17 August 2013

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.


Saturday, 10 August 2013

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.

Sunday, 28 July 2013

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 :)

Friday, 28 September 2012

CFS Progress Review: September 2012

This month: Mortality, Priority and Moving Forward

Some of the readers of this blog (however few or many there may be) might laugh at me for contemplating my mortality at 29. But how many of you who are older did the same at my age?

I am single, have no desire for children, and certainly see no joy in trying to climb either a property or career ladder right now.

Although at one time in my life I did see value in some of these things.

Having M.E has changed me (for the better).

I have spent much of the last month and the last week in particular, sitting with my thoughts and moral beliefs and trying to get comfortable with them. If I found myself becoming uncomfortable, I asked myself why that was so. And (after a whole lot of soul searching) I came to some pleasing conclusions:

1) I am single and I embrace this freedom and indepence
2) I have no interest in having children
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 acheive 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 don't want to go into detail about any of these points, as they are are private and personal to me. They could be thought of as my "big" life choices/beliefs. Although I have given you a brief outline of them for a reason...

I believe that full recovery is not possible until you accept that your lifestyle and every aspect of it must change. Thinking that you want to get back to how things were before you were ill is pointless-when you think about it, how much were you enjoying or getting out of life before you were ill??? For me my life consisted of struggling to keep up with my work, my social life and spending ALL of my days off sleeping.  Who wants that lifestyle back again?

However, making change is not easy, which is why I've stuggled so much emotionally the past month. Letting go of the past and embracing the future is hard work. The points listed above could well be thought of in opposite terms twelve months ago; but now they are as they are, and reading them excites me and makes me happy and content. And that, really, is all we want out of life, isn't it?

Friday, 31 August 2012

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

Saturday, 30 June 2012

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


This blog post is written
in memory of Jimmy Stickybeak the 2nd
2007-2012

Wednesday, 30 May 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!

Monday, 21 May 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.

Thursday, 5 April 2012

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!

Sunday, 4 March 2012

CFS Progress Review: February 2012

I have been reading back through my diary for February, and as I did for the previous month, here's a list of statements and thoughts about my progress:

-paying attention to my body's natural circadian rhythms really helps me with my pacing

-buying my food shopping online is a much more effective use of time and energy than having to drag myself around a supermarket (this isn't even possible!)

-I have started to look at little things in my life differently; I feel I am coming to a state of acceptance with my current state of health and how it effects my life on a daily basis

-”baby steps” forward are still steps forward

-it still surprises me how my energy levels are so directly connected to the type and amounts of food I eat, and also the frequency I eat. I am planning to look at this in more detail in the coming weeks.

-after trying many many recovery techniques, I have found that pacing is the only technique that truly has any benefit for me, and in which I can see a marked difference in my energy levels, however incremental they may be.

-Taking a St John's Wort complex has had a positive effect on lessening my depressive moodswings. I still get them, but they are not as severe and don't last as long.

-I still get frustrated that I can't live my life the way I did previously, but I do think that in a lot of ways this is a good thing.

-Through mindful meditation and regular rest periods throughout the day, I am learning to live more in my mind and less in my body. I am also able to recognise the signs of exhaustion more easily, and am able to do something about this without my symptoms getting too bad too quickly.

-I am learning to focus on the things I am able to do-however small-rather than the things I can no longer do, or perhaps won't be able to for a while

-At night I have lots of dreams about moving away from my old way of life or my old way of thinking. It is obvious that my subconscious is trying to tell me something.

-Being in unfamiliar places (e.g anywhere that is not my home or my mum's house) makes me extremely severely fatigued, sick, shaky and nauseous extremely quickly. A reminder that I am not recovering as quickly as I sometimes think I am.

-I have made a lot of friends in the creative community who are living with similar conditions. I find this comforting and it's good to know there are other people out there with similar interests who know exactly what I'm going through on a daily basis.

-On a good day I can do 45 minutes activity before I have 15 minutes complete rest (no radio, tv etc). On a bad day the activity level dips to 10 minutes with an hour rest in between. Talk about a fluctuating illness!

-Drinking 4 pints of filtered water a day seems to boost my energy levels, lessen my nerve pains and has meant I have not had painkillers for 5 days in a row now.

I'll say again, these things aren't cures-what's right for me may not be right for you, but I hope that me writing about my own personal journey of recovery will at least help and inspire you and others in recovery.

Jen x :)

Monday, 27 February 2012

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.

ImageImage

Friday, 3 February 2012

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.

Wednesday, 25 January 2012

It's All About The Joy

I would like to bring your attention to what, in my personal opinion, is the best book ever written about  CFS/ME. It is written by a lovely lady called Diane Kerner, and the book is called "My Own Medicine: the Process of Recovery from Chronic Illness" .

I have read an awful lot of information on the internet, and in books over the last few months, as I tried to make sense of my illness. Ninety percent of the literature that I have read is all about "coping" and "learning to live with it"; okay, I understand that approach to a degree, but I had a life BEFORE  I was diagnosed, and yes, perhaps the CFS has come along to teach me that my previous lifestyle was damaging my health, but it doesn't mean I can't ever reclaim my life back. Perhaps even in a better way.

I was so moved by the book, I decided to contact Diane personally, to let her know she had been able to help someone so profoundly. Here is an extract from the email reply I received:
"Thank you for your wonderful letter, Jen. I'm so happy you took the time to write. That is precious. I was just thinking this morning that I want to look for more ways to help others and your e-mail is a reminder that I am helping even when I don't realize it. I'm so happy to read that you found some validation in my words and especially latched on to the joy factor. It's something that is easily overlooked as many just don't equate illness and joy as possibly living together.

You know, I did write that book because I had the same experience as you. No one was talking about life and healing. It was all coping. No hope anywhere. No map. Plus, the way of coping was tedious and time-consuming - a lot to ask of someone being drowned by fatigue.

I have a blog as well at http://whats2love.blogspot.com/. It's purpose is to remind people to take time to see the beauty in the everyday, to rekindle the magic and wonder they carried with them as children and bring it into their present. It's all about the joy."

I guess the last sentence says it all. It's all about the joy. Please try and remember that, even when you have a bad day. I hope if you are reading this blog you are finding it uplifting and optimistic and joyful.

I hope to add posts along a similar vein in the future.

And I will finish by saying a big thank you to Diane for letting me feature her on my little blog :) x

Click here to visit Diane Kerner's very helpful and inspiring website