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.

M.E/C.F.S and Nutrition

Let Thy Food Be Thy Medicine - JayHell

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

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

Hydration:

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

Mindful eating:

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

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

Being a "veggie" with M.E:

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

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

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

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

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

Things I Have Eaten

Constructive comments are appreciated.

Thanks for reading, sorry it was a long one!

Jen :) x

CFS Progress Review: 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: 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!

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.