Finding your Passion

As you’ve probably noticed I’ve been a bit sporadic with my posting lately. I’m going to try and rectify that and aim for 2 posts a week, on a Tuesday and a Thursday.

Today I want to expand on one of my Top 5 things I’ve learnt in a year of Chronic Illness, having something you’re passionate about. Lately I’ve bee reading Keith Abraham’s It starts with Passion. This book is a self-help book focused on helping people to identify what they are passionate about and how they can make it happen.

Image retrieved from GoodReads.

I haven’t quite finished the book yet but I have really enjoyed the challenges and activities it contains to help you identify your passions. Since childhood I have been passionate about family, the environment, and learning new things. These passions are still high on my list today but I would also add that I’m passionate about helping others and making a difference in the world. When I’m doing something that I know is helping others and the environment, and that allows me to learn new things along the way as well I’m at my most happiest.

Me (in 2013) enjoying my work delivering sustainability information to the community at a garden open day.

Abraham suggests that to find your ‘Passion’ you need to identify what is meaningful to you. What emotions energise you and make you feel good about yourself? Why do you want to do something? If you know your reason WHY, and it’s linked to making you feel good about yourself, you are more likely to achieve your goals. What is that one thing that, whenever you do it, you feel great?

Setting Life Goals..

The first big challenge that Abraham sets is to write your life To-Do list, that is to create a list of 100 goals you would like to achieve. It doesn’t matter if you think you can do it now, what matters is to get it down on paper. I did this challenge on Monday. It took me most of the day to complete my list of 100 things I would like to see, do, experience or own, but I got there. My list includes things like starting a family (probably one of my longest held dreams), starting and running my own business, delivering workshops and presentations that help people live a better and more sustainable life, and travelling to various countries I’d like to visit. It also included things like being financially secure, learning new skills, and finding a work/life balance that enables me to live a fulfilling life even with my chronic illnesses.

GOAL #99: Eat vegetables with every meal

Some of the goals sound, at the moment, impossible to me (delivering a TEDs talk), others are very simple I just haven’t had the time or energy to actually complete them (writing a will and framing and displaying our wedding pictures), and others are things I am already doing but want to make sure they stay part of my daily routine (meditation, yoga, exercises).

Identifying the Why…

Once you have your list of 100 goals, the next step is to go back through them and think about how you would feel if you achieved them. What are your driving emotions? You will probably notice a pattern emerging in the emotions that you are identifying. Abraham states that the top 3 emotions that you find are your driving emotions, the ones that you want to feel every day. At this point you take those 3 driving emotions and define what they mean to you. For me, my driving emotions are Passionate, Grateful, and Accomplished. These are the feelings I want to feel on a daily basis. My definitions are: Passionate: I care deeply for my family, friends and others. My actions are in line with my beliefs and it’s obvious to others that they are important to me. My passion is infectious – others listen and understand the importance, my words and actions enourage others to share my passion. Grateful: I recognise how lucky I am to have everything I have. I celebrate my small achievements and take notice of all the wonder the world provides me with. My body is relaxed and healthy, and my relationships are strong. I am happy within myself and remain calm in the face of adversity. Accomplished: I know I am making a positive difference in my family and work life. My work matter, makes a difference and is important to me. I am creating a positive, passionate legacy that will benefit others even after I’m gone. I am able to take complex topics and simplify them so that others can understand and take action on them. Thanks to having completed this challenge, I am feeling more confident about taking action to follow my dreams. I’m working on a few big projects at the moment and I will share them when I’m able to. For now though it’s time for you to take some action… My challenge to you today is to write your own list of 100 Goals and to identify and define you’re driving emotions. Please feel free to share your results in the comment section. Also, please let me know if you’d like me to share my list of 100 Goals. If anyone wants me to I’ll type it up as a separate post.

The Top 5 things I’ve learnt in a year of chronic illness

I have so many posts I need to write and share with you over the next few weeks including book reviews, guidance for setting and achieving goals with a chronic illness, and requests for help and feedback on a couple of big projects I’m working on. I look forward to sharing all of these with you and with setting some little challenges to help us all move towards being the best we can be starting with today’s post: Lessons learnt in a year of chronic illness.

The last year has been very stressful and busy for me but through all of this I feel I’ve learnt a few things about myself and how I can accept and live with my chronic illnesses.

 

Photo (c) E. S. January, 2014

The Top 5 Things I’ve learnt from my chronic illnesses

1. Everyone’s experiences are different. Each and every person who suffers from a chronic illness (even the same illness) has different symptoms and reacts differently to different treatments. For example my main symptoms are extreme brain fog, constant pain and constant exhaustion. A friend of mine who also has ME/CFS doesn’t have the constant pain, instead her worst symptom is sensory sensitivity (I struggle with this but not as much). For some people antidepressants such as Amitriptyline (Endep) help with pain and sleep issues, over the last 2 months I’ve found it doesn’t help me. I have found though that a TENS machine helps with some of my pain and that meditation and being mindful is the best thing I can do to help me be able to focus better and actually achieve the things I want to do within my limits.

   

   Found on Facebook

2. I’m stronger than I thought. Many people around me, including my husband, doctors and close friends, have commented on how well I have been coping with this illness. I’ve had a few people actually tell me it’s OK to share my negative thoughts, as if I was just hiding them away. Somehow I have managed to stay mainly positive about my situation. Yes I’ve had a few bad days spent crying and feeling sorry for myself, but overall I’ve seen the benefits of having more time to do the things I need to do to feel better, to relax and to reassess my life.

   

   Celebrating the success of the Foggy Frog Kickstarter Campaign

3. Family and community are the most important thing. Having a strong relationship with my husband and both our families, as well as our close friends, has meant that I’ve had ongoing support since I first became ill. I think this has been a major factor in my ability to stay positive. However, sometimes I’ve found that although they try to understand (and I do love you all for it) they don’t always really get what I’m going through and why I’m making certain decisions. This is where my new found group of friends, here and on Facebook and Twitter, has really helped. I’ve made connections with others who are going through the same things as me, I’ve been able to help them and they’ve been able to help me.

   

   My husband and I with our closest friends on our wedding day.
   Photo (c) Doug Quine Photography, November 2011

4. It’s important to have something you’re passionate about. The first 6 months of being ill were the most difficult for me. During this time I had quite a few negative pity days and I struggled to find ways in which I could feel useful and purposeful in my life. Then I began blogging, I made new friends and I started working on the Foggy Frog Campaign. I realised that even if I did not have the enery to work fulltime, be out in the world talking to people or researching and developing key sustainability strategies and projects I could still be useful. I just had to find a way to work within my limits on a project that I felt passionate about and that I could engage others in as well. I’m still passionate about the environment and sustainability but at the moment my strongest passion is raising awareness and advocating for the chronically ill using Foggy Frog and the Pain Gang as a tool.

   

   Foggy Frog (c) Megan S, January 2014

5. Being ill opens up new and exciting opportunities. Before falling ill I was working fulltime in a job I enjoyed. It wasn’t completely my dream job (half was, the other half was necessary work in the position but not what I really enjoyed) but I was fully engaged, enthusiastic and passionate about the work I was doing. Then I got sick. I still wanted to do the work, but I didn’t have the energy or strength to keep it up. Slowly, as my health has improved and stabilised slightly, I have found new passions in chronic illness awareness and advocacy, mindfulness, meditation and sewing. I have also reignited a passion for yoga and a desire to run my own business. I have previously tried working for my self doing consultancy work with people I had worked with in the past. I really enjoyed the flexibility and variety this work gave me but I had not been making enough money for us to live off. Once again, the desire to work for myself has come to the surface. There are pros and cons to this and I will assess those in a future post but it is something to seriously consider at this point in time.

   

   Found on Facebook

Overall, having a chronic illness has made me realise the importance of a great support network, a positive and flexible view on life, and keeping yourself passionate and engaged in what you do.

Chronic illness takes away so much and can make it difficult to be dependable and spontaneous but there is also so much you can learn and do when you accept that a chronic illness is for life and you have to learn to live with it. Consider your options and make the right decisions for you right now. When living with a chronic illness I believe it’s important to live in the moment, don’t compare what you’re able to do now to what you used to be able to do and don’t spend all your time worrying and stressing about the future.

Found on Facebook

How do you want to feel now?

What can you do to feel that way?

These are the questions I’ve started asking myself daily. Try it, think of one thing you can do today to make you feel happy, loved, accomplished or whatever feeling it is you need to feel right now.

If you focus on what you can do and take action every day (no matter how small that action is) you will keep moving forward.

My challenge for you today is to ask yourself the questions above and let us know what one thing you’re going to do today to get closer to how you want to feel.

Ask Megan: Making an Impact…

The last few weeks have been pretty busy and rather stressful. As a result I haven’t had the time or energy to focus on my blog and other endeavours that I would have liked to have been doing.

Source: Pintrest

I have so many things I’d like to write about but I wanted to respond to a reader’s question. It has been 2 months since Alison from Temporary Fatigue Syndrome contacted me asking about making an impact and expanding her blog. Here’s her question:

Hi, Megan! I was wondering how you have been able to make such an impact/how you got to where you are today with your blog. I want to make an impact but haven’t known where to start or how to do it. Since I’m dealing with this illness at 21, I almost wish there was a way to be in contact with other young people going through the same (most people I find online tend to be older). I recently started a blog, mainly as a way to interact with others and share what I have learned/how I am improving. How can I expand my blog, or even just make a bigger impact?

I don’t really know how to answer this question. When I first began this blog I wasn’t thinking about raising awareness of my conditions and making an impact in how people view those who are ill. Instead I started it as a way to make sense of what I was going through, to potentially make contact with others who were going through the same thing and share what was working or not working.

My blog has grown organically as I’ve made friends through the blogosphere and became more aware of the difficulties being faced by both myself and the others who suffer from similar conditions.

My suggestions for making an impact with a new blog:

1. Be Yourself. When you write posts, write about things that interest you. Share your own stories and the results of any research you have done. Don’t try to imitate any other people or write about things that you have not interest in.
2. Interact with others. Visit other blogs and comment on their posts. Find people you relate to and keep up communication with them. Ask people to join you in activities and join in when others are doing things. Share other people’s posts if they’re relevant to you and your audience.
3. Start small. When trying to make a difference, just focus on what you can do to help one or two people. As mentioned above, make friends with other bloggers. Find ways you can help them. If your actions are really helpful then (from my experience) the impact and experience grows by itself.
4. Listen to your readers. If someone suggests something, or has an issue with something you’ve written, take their thoughts on board. Either respond via a comment or email, or write a post about it.

Alison, I hope this post helps you and others like you who are interested in making a difference. As I’ve said multiple times above I found that an organic growth from ideas that help yourself and maybe one or two others tend to be the ones that help make a big impact in the long run.

Those of you who have been blogging for a while and found that your work makes an impact, do you have any advice to add to my comments above?

Don’t forget if you have a question for me you can use the Say Hello… tab at the top of this blog to contact me. Also sign up for our newsletter if you want updates on the Foggy Frog campaign and how we’re working together to make an impact.

Can you help? – Seeking people living with chronic invisible illness

A few weeks ago I was contacted by the Manchester Debt Advisory Service asking for help in reaching out to you for stories for a new campaign they are launching. I’m going to share their request today but would like to make it clear that I’m not associated with them in any way, I’m just sharing them for those who may be interested in helping them out.

Hidden Cost of Chronic Illness

The Manchester Debt Advisory Service is about to launch a campaign called the “Hidden Costs of Chronic Illness“. They want to better understand the costs and expenses associated with chronic illness so we can put together useful content for people who may be struggling financially and also suffering from ME/CFS and other chronic illnesses.

Below is the information they’ve sent through to me about their:

We’re ideally looking for people who can provide us with brief video clips (smartphone clips are absolutely fine), talking to us about the less-well-known challenges they face, especially in relation to cost. We know for example, that special dietary requirements for people with digestive disorders can be costly, as can skin care products for suffers of eczema and psoriasis.

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions.We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

It would be a great help if we could find out the following;

• How long they’ve had their condition.
• What their specific condition is.
• How it affects them (professionally, socially, emotionally)
• What things they have to purchase in relation to their condition.
• What other financial disadvantages they face.
• Roughly how much they spend per month in relation to their condition.
• How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

Participants can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

This is a UK based campaign but I feel that the information would be similar world wide. I also felt this request was timely, given that it is ME/CFS Awareness week this week.

If you are able (and happy) to, please check out their campaign and possibly share your story to help others understand.

International ME/CFS/Fibromyalgia Awareness Day: A letter to my illness

Today is International ME/CFS/Fibromyalgia Awareness Day. As mentioned in Friday’s This is M.E. post, today I’m joining in with Sally’s #May12BlogBomb. I have decided to include the Pelvic Congestion Syndrome in today’s post as I don’t believe it has an awareness day of it’s own and it is part of my life.

To my constant companions – ME/CFS, Fibromyalgia and Pelvic Congestion Syndrome,

It’s now been over a year since the three of you decided to make yourself known in the most painful way I could imagine. At the time I didn’t know who you were or what your presence would mean to me and my life, but I’ve been learning a lot in the last 13 months.

Before you were here I had a very active, fulfilling life. I worked fulltime in a job I was finding exciting and meaningful, through it I felt I was actually making a difference to how people in the local community viewed and interacted with the environment. I was also a regular attender at my local gym and spent weekends being active with my husband, either hiking, walking or riding most weekends. My husband and I were planning a safari holiday to Africa, which would have been this November. I was going to go see the Gorillas in the wild.

But you’ve changed all of that! Between the three of you, you have taken away my ability to be active, to consistently think clearly and even to get the right words out of my mouth a lot of the time.

All three of you cause constant pain to my body. I am always aching and if I do too much, or eat the wrong thing that ache can turn into sharp stabbing pains or fierce burning. Most days I have to cope with at least one part of my body being numb with pins and needles.

I’m no longer able to lift heavy things or participate in any intense form of exercise for any length of time. In fact, I can only walk for 15 – 20 minutes at a time without the pain levels rising.

Since you came into my life I have been unable to work. Although my doctor believes I am now ready to return back to work part time (3 half days a week), I still struggle to do more than half an hour of any mental or physical activity before I need a break, and I definitely can’t drive long distances yet.

ME/CFS and Fibromyalgia, I believe you two are the cause of my incapacity to think and participate in mental activities for any length of time. The brain fog and extreme fatigue/exhaustion that you cause make it simply impossible for me to focus for any length of time. For a while there you took away my ability to read at all, but recently we seem to have come to a comprimise. As long as I don’t read for too long (less than half an hour at a time) I can now read, but I don’t always remember what I’ve read for very long afterwards.

Thanks to the medicines I’m on to try and allieviate your symptoms, I have constant nausea which interferes with my ability to eat properly. Some days I may be too nauseous to eat anything, others I may feel like I need to constantly eat to feel OK. Again, we seem to have come to a compromise, if I eat 6 smaller meals each day you keep the nausea and bloating to a minimum.

I know so far this letter has been a list of complaints, the negative things you have brought into my life, but I’m also thankful to you, my chronic illnesses. You have helped me view the world differently.

Thanks to you I’ve gotten back in touch with my spiritual/emotional side that has been supressed due to lack of time in my busy life before you came to visit. I have the time to do yoga (for 12 minutes) and meditate daily.

I’m able to see what is really important to me, my family and my ability to help others. You may have made it so that I’m incapable of doing what I previously did in my busy, active life but I have found other ways to connect and to help. Because of you I was able to write the story for the Foggy Frog and the Pain Gang picture book and associated campaign.

You have given me the experience and the time to develop new skills in writing, drawing, advocating and sewing.

I have learnt (or at least I’m learning) to pace myself and use my energy wisely. I spend more time on looking after my health and caring for those around me than I previously did. Staying positive isn’t always easy but it is something I aim to do by remembering the good things I’m now able to do that I didn’t do before, and by remembering that nothing lasts forever.

My doctors don’t seem to know very much about you so this is a journey we’re taking together. Sometimes I feel very alone on this path but I remember you are always there and so is my family. I just need to remember to keep fighting for my rights and for the opportunities there are to minimise your impact on my life.

You may have stalled our plans to travel and to start a family, but no matter what happens I will fight for these plans. To me having a family of my own is one of the most important things that could happen to me. I am willing to go through a period of even more pain from you, Fibromyalgia and Pelvic Congestion Syndrome, if it means I have a child of my own to love and to care for. This is one dream that I will never give up on!

So, although you have brought me constant pain, extreme fatigue and brain fog (as well as many, many other symptoms that just confuse my doctors), I am grateful that you have come into my life. I have learnt so much from this experience so far, and will continue to learn as time goes on. I will find a way to live a reasonably active and fulfilling life again, even with the three of you here with me.

Thank you to my constant companions –  ME/CFS, Fibromyalgia, and Pelvic Congestion Syndrome. You have made me strong.

Until next time,

Megan

This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain

This blog chain was set up by Louise from Get Up and Go Guru. Check out her original post here.

This Is M.E

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.

I also suffer from Fibromyalgia and Pelvic Congestion Syndrome.

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have joined in with the This is M.E. made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! 

What is your name & how long have you had ME / CFS?

I’m Megan and I’ve had CFS/ME and Fibromyalgia for 13 months at differing levels of severity.

Where do you live? (Country, State, City – however detailed you want)

I live in South Australia, Australia. I’ve lived here my whole life.

Age (if you’re willing to share)

28

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

1. I meditate at least once a day as part of my daily rest times. This has helped me come to terms with where I am and keeps me focused and relaxed.

2. I have watched all the M.A.S.H., QI, and Grand Designs (both UK and Australia) episodes that we have at home at least twice. Most afternoons are spent crashed on the couch with the tv on for company.

3. Although I’m not working at the moment I don’t get bored. My days are full of writing for this blog, drawing for the Foggy Frog and the Pain Gang picture book, meditating, exercising or attending appointments (doctors, physio, exercise physiologist, accupuncture and naturopath). I’d love to have some extra time to do more research into my conditions so I can better advocate for my health, but at the moment I’m using all my available energy.

4. My life is good. Even with the physical pain and complete and utter exhaustion I face every day, I’m happy and have found ways to fill my life and feel like I’m making a contribution.

5. I miss being able to catch up with my friends, but really appreciate the few close friends who visit or contact me regularly. A message or phone call every now and then is enough to make me feel happy and know that you still care.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1. No matter how healthy I look, the constant pain and fatigue I face means I’m very limited in what I can do without causing an increase in symptoms.

2. I don’t cope with large groups or activities that involve bright lights and loud noises. Within 5 minutes of being in these situations (including watching tv) my brain fog increases. Within 15 minutes my pain increases. This is why I often seem to not be paying attention or joining in the conversation. It’s also why I may decline or leave early. I’m not trying to be rude or avoid you.

3. With most activities I can only do 15 to 30 minutes before I need a break. I have regular 20-30 minute rests in the morning and a 1 hour or more sleep/rest mid-afternoon. If I don’t do this the pain and fatigue becomes unbearable. Usually after 3pm I’m completely out of it and I’m not the best company.

4. I have a disabled parking permit. Without this I would be struggling to go to my appointments and library or shopping outings. My husband does most of the shopping trips without me because they are just too much for me.

5. Even though I have these conditions and I’m in constant pain and exhaustion I still want to participate in all the activities I used to. Unfortunately I’m learning that this isn’t possible. I need to really consider what the possible side effects are before agreeing to an activity. 

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

This is a real condition with physical symptoms. It is hard to get a diagnosis and many doctors don’t even believe it is real. Several of the doctors I have seen have suggested that it is a form of depression. I accept that depression is also a real condition but I know for a fact I’m not depressed (psychologist has also agreed that), so please stop suggesting it! Treating ME/CFS as a psychological condition does not allow for treatment of some of the most prominent symptoms. Yes a lot of what is causing this illness is all in my head, but it is not all in my mind. Increasing exercise does not help and can actually be harmful for people with ME/CFS. We have to pace ourselves and live within our limits.

What is the most frustrating aspect for you of living with ME / CFS?

Not knowing if I will ever be healthy again and the impact of that on our life choices. As many of you know I’ve always wanted to be a mother. I still don’t know how any of these conditions react during pregnancy or beyond. I’ve read stories of people getting better with pregnancy and others where the pain and fatigue got worse. My husband wants me to be healthy before we even try for children but I’m scared I will never be 100% again and that this will mean we’ll never try to concieve. Even if I could convince him to try before I was 100%, I know that the pain from the Pelvic Congestion Syndrome will definitely increase and probably the pain from Fibromyalgia as well. I could be lucky and have remission from the ME/CFS during pregnancy but I can’t plan on it.

Anything else you’d like to say before finishing?

ME/CFS and Fibromyalgia have no known cures. Doctors don’t know what causes these conditions and some still argue that both of these aren’t real illnesses. As I said before, these conditions are real and real people are living with the impacts of them every day. We are not drug seekers (If it were up to me I wouldn’t take any at all, but I can’t do anything without them), we are in pain all the time. It can be hard to explain the symptoms because they are so varied and so different to what a normal person feels. I hope that by raising awareness we can help both the medical and the general community understand what these illnesses are like.

Contact details (if you want to give them) – blog, Twitter, FB etc

Blog: www.mychroniclifejourney.com Twitter: @ChronicMeg  Facebook: facebook.com/ChronicMeg

Any other bloggers who want to join the blog chain, please copy this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a Tweet so she can link to your blog post in her original post.

---

#May12BlogBomb

I am also joining with Sally at SallyJustMe.Blogspot.com.au who is orgnanising a#May12BlogBomb where bloggers all post a blog about living with CFS / ME / Fibro on May 12 so keep your eye out for another interesting post on Monday. Read her article here about #May12BlogBomb.

 If you do a #ThisIsME post, Louise will link to your post. If you do a #ThisIsME blog post and then schedule it to go ‘live’ on May 12 you can be part of both the #ThisIsME awareness campaign and the#May12BlogBomb. Wins all round!!

Looking forward to reading all your #ThisIsME posts. Use this hashtag on Twitter or Facebook to encourage more people to take part and to help people find #ThisIsME posts. And please let Louise know when your post is up and she’ll link to your page!!

---

#ThisIsME Posts By Other Bloggers

TipsForME.Wordpress.com – Posted 1 May 2014

SallyJustME.Blogspot.co.uk – Posted 2 May 2014

BeingTheImperfectMom.com – Posted 5 May 2014

Granualie.blog.de – Posted 7 May 2014

Sending out Loving Kindness

May I/you/we…

 

Over the weekend I read Toni Bernhard’s book How to be Sick. This is a wonderful book for those suffering from chronic illness or caring for someone with a chronic illnesses because it provides a set of easy to implement practices and techniques for dealing with the mental suffering that accompanies these roles.

One of the practices is the Loving Kindness practice (Metta) where you spend time sending well-wishes to yourself, people you know or a particular group of people. To do this you create your own set of phrases that resonate with you and what you wish for everyone. What you see above is my Metta phrases that I have begun spending time repeating silently to myself, I’ve begun by sending these well-wishes to myself by starting with “May I…” but I also send them out to others by starting with “May you…” or “May we…”

So I hope that everyone one of us may live our lives peaceful and true to ourselves, with an open heart and open mind so that we may be free from mental suffering.

Determining what’s worth it

Life with a chronic illness is extremely difficult physically, mentally and emotionally (spiritually). One of the biggest issues I’ve found that can fall under all three of these categories is determining which activities to undertake and which to avoid.

What activities are worth causing an increase in symptoms?

How do we know if an activity will be OK or if it will cause a crash?

These types of questions are part of a constant mental struggle I have on a daily basis, and I’m sure many of you who also suffer from chronic conditions have the same struggle.

For example, over the weekend my husband participated in a rogaine. Before becoming ill I had participated in a few of these events with him (and even participated in one during the first few weeks of my condition – which probably was one of those ‘wrong’ decisions). Since becoming ill I have come along to the camp site once and stayed at the camp site reading and resting while he participated in the rogaine with our friends.

There have been other times I’d planned to go up but the weather had been so horrible I’d decided it wasn’t worth it and stayed home while he was there.

This time we planned again for me to come up and stay at camp but the weather on the few days leading up to the weekend were horrible with lots of rain and the day we were meant to leave it was forecast for thunderstorms. So, once again I had to think about the impact going up with them would have on me versus the impact of staying home alone.

After much deliberation (and discussion with both E and my mum) I decided the benefit of getting away from home and having a change of scenery would be worth the impact of travelling and camping.

The location of the rogaine was over 3 hours drive from home so travel did have a major impact on my pain and fatigue levels. We stopped part way there for dinner but didn’t arrive and set up camp until around 11 pm, way after my bed time.

During the day while the others were out rogaining I spent the day reading, drawing, resting and meditating. Yes, I had crashed as a result of the travel but the time I spent meditating and reading has once again had an impact on how I look at my life. The benefits I’ve got from the practices I read about in How to be Sick by Toni Bernhard will be long lasting. If I had stayed home I may have finished the book but I wouldn’t have spent as much time practicing the techniques and resting.

(c) Megan S, May 2014

We drove home yesterday morning, getting home around lunch time. I fell asleep shortly after lunch and slept most of the afternoon. Unfortunately, I fell asleep before doing some of the tasks E had asked me to complete (put dishwasher and load of washing on) so he was upset with me for not getting my priorities right but I think the sleep is what I needed.

Today I’m struggling with very low energy levels but my pain levels have remained at about 3/10 (what seems to be my baseline in cold/wet weather) and mentally I’m feeling calm and content.

For me, this weekend away was worth the increased pain and fatigue but I still feel that the mental struggle of determining what is worth doing when you are living with a chronic illness is a burden that I still have to face on a daily basis.

Thanks to what I read and practiced over the weekend I feel that I can face this burden a little more calmly and accepting of where I am at this stage in my illness.

How do you deal with this mental struggle?

What techniques or guidelines do you have in place to help you determine these limits?

Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Manangement – Book Review

Thanks to some bad weather here, I’ve had more time to read the last few days than I usually do. I’ve now finished reading Dr Rosamund Vallings book, Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management.

Image from Goodreads

In the forward of this book, Professor Warren P. Tate describes it as

“… a comprehensive yet accessible treatise on CFS/ME” (p. 9-10 Vallings, 2012)

and

“… a much needed bible of information” (p. 10 Vallings, 2012).

Having read through the whole book, I have to agree with Professor Tate that this has been written in a way that is both comprehensive and accessible. However, there are a few chapters where I felt additional information could have been supplied. For example, the chapter “Managing Relapses” provided an outline of different issues that may lead to relapses and suggested for people to watch out for these issues. I would have liked to have seen a bit more information on how to avoid the issues and how to plan for issues that can’t be avoided or are desired, such as starting a family.

Like The Complete Fibromyalgia Health, Diet Guide and Cookbook, this book is a great introduction to a very complex and difficult to understand condition. The introduction and information provided about what ME/CFS is and how it affects an individuals body were very comprehensive and provided a lot of information I found useful, even after my ongoing research into the conditions I’m facing.

The parts I found less useful, or at least less comprehensive, were the sections on Managing and Living with ME/CFS. Although the information provided in these sections provide a great starting point for someone newly diagnosed or considering a diagnosis of ME/CFS, I felt there could have been more detail on the actual actions people living with this illness could take under each of the areas covered. I understand that this may be because little is known about the actions and research is continuing at this time. Dr Rosamund may have wanted to keep to information that would most likely remain relevant over an extended period of time.

Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management is a long book with 342 pages of detailed and helpful information related to ME/CFS. As someone suffering from the condition, I found the length to be an issue because brain fog and fatigue limited the amount I could read at one time and my ability to remember what I had read. The book is broken down into manageable chapters, however I always wanted to keep reading even when I had reached my limit. On some days brain fog made it difficult to even read a page, let alone a chapter of the book.

This book is, as described in the forward, ” a much needed bible of information” on an illness that can be difficult for anyone to comprehend. It is a book that anyone with any connection with ME/CFS should consider reading; those living with the condition, those who know someone with the condition, and doctors working with those people would benefit from the information in this book. The length and size of the book may be daunting for individuals living with ME/CFS but it is worth the effort. I would recommend taking the time to read a few pages or chapters at a time and beginning with the chapters that you feel most relate to your immediate concerns.

If you suffer from ME/CFS have you read this book?

Did you find it useful?