The Stigma of Chronic Pain

“It’s all in your head!”

“(S)He’s just faking it to get out of (work/school/insert activity here)”

” It can’t be that bad!”

“It must be good to be able to do what you want, when you want”

 

“You just need to (exercise, eat this, do that) more/less”

 

1 in 5 people live with it but not many people understand it…

Chronic Pain

For the past 3 and a half years I’ve lived with a constant base level of pain, punctuated by periods of overwhelming and unbearable pain. Over that time I’ve heard many uninformed opinions and recommendations from strangers, friends and family, and even the professionals who are meant to be helping me. Sometimes I even judge myself, questioning if it really is all in my head. I’ve also heard stories from other people living with chronic pain that make the things I’ve heard sound trivial.

Statistics show that people living with chronic pain have a much lower perceived quality of life than the general population. I personally believe this is from the dual-impact of issues related to finding a pain management regime that actually helps and the psychological impacts of the myths and misperceptions surrounding these conditions which are invisible to those around us.

Let’s take a quick look at the Pain Management Regime issues. There are many drugs and treatment options out there that can be helpful, however none of them work for everyone. For many with chronic pain, there may be no known cause or cure. This makes it difficult to work out what you should be doing to manage the pain. To top it off, if you do find a drug or treatment option that does help in some way, it seems more than likely that there’ll be side effects that make the treatment option not really an option at all.

Now, the myths and misperceptions surrounding chronic pain can be extremely detrimental to the mental health of those living with it. The constant disbelief and judgement of others can make you question yourself and the way you’re handling your condition. What makes it worse is that, for conditions like Fibromyalgia, there are still doctors out there who don’t believe in it at all and others who believe it is all in the persons head. These doctors send you off to a psychologist or, even worse, they do nothing and inform you to just push through it.

What we need is a better understanding and more empathy from ourselves and from others. We need to find a way to raise awareness of the prevalence of these conditions, and to counteract some of the myths and misperceptions. It is my hope that if we can get more people sharing their stories we can make a difference. There are still many people out there who do ‘just push through it’ because they have no support around them and they may not actually believe it themselves. It is only if we work together to raise awareness and to answer people’s questions that we can change the way people view chronic pain and make people aware of how big a problem it is in today’s society.

After meeting with Dr Meredith Craigie on Monday to discuss the Foggy Frog and the Pain Gang Campaign, I have realised the gap there is in information and support for younger people living with chronic pain; especially in Australia. As such, my goal is to initially focus the campaign on supporting this younger generation through teacher and parent education, and establishing a support group and related workshops and resources for young people living with pain.

My ideas are still in very early development phase but I hope with the launch of the Foggy Frog and the Pain Gang Picture Book in September I’ll be able to announce at least the first part of this wider campaign.

I’d love your input…

What do you feel are important points for teachers and parents to understand if they are to support young people with chronic pain?

What would be your number 1 tip for living a meaningful and fulfilling life with chronic pain?

Power, energy, and other random thoughts…

It’s been over a week since I last posted. Between my major projects (Foggy Frog book and AAEE 2016 Conference) and the weather here it’s been difficult to find time to write here.

Yesterday, just as I was about to write my post, the power went out at home. It was out most the day so instead of working (everything I’ve got to do at the moment is online) I spent the day reading Harry Potter and playing with the cats.

It was interesting working out the best ways to stay warm when the heater didn’t have it’s fan (it was warm right in front of it but the heat didn’t get very far) and I didn’t have electricity to make the gas hot water work for a bath or the kettle work for tea.

In the end, I used the stove (gas and I could light it with a match) to boil water for tea and just sat as close as I could to the fire most the day with the cats for company.

Anyway, on to what I was planning to talk about yesterday…

Testosterone – an Update

It’s been over 3 months since I started on Testosterone treatment for pain and energy management.

Using the syringe to measure and apply the cream to my skin

The first few months I didn’t really notice much difference. There was a good reason for that though as, although we started at the usual dose for women and doubled it at the end of each month, I didn’t seem to be absorbing much of it. The free levels in my blood only went up by 0.3 over the first two months from 0.4 to 0.7 (normal range for women is 1.5 to 8 – I don’t remember what the measurement units are sorry)!

Rubbing the cream in to make sure as much as possible gets absorbed

However, once we doubled the dose again, for a total of 1 mL daily, my free testosterone levels in my blood have finally reached low-mid normal range (around 2). I’m beginning to notice some changes in my base levels of pain and a decrease in the number and intensity of the crashes I have. Nothing really worth claiming as a significant improvement yet, but even the change in crash frequency has allowed me to get a lot more done recently.

Foggy Frog and the Pain Gang Book Launch

We’ve set a date for the official book launch! There will be a live event on Saturday 24 September 2016 at Burnside Library, followed by a series of online events during Invisible Illness Awareness Week (September 26 – October 2 2016). Register for the live event here and stay tuned for more details of the online events.

If you have your own blog or podcast and would be interested in being a part of the Invisible Illness Awareness Week events let me know in the comments or contact me below.

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Separating me from M.E. (and other chronic illnesses)

Imagine waking every day and being unsure about what you’ll be able to achieve that day. You may wake up to pain levels so high that even rolling over in bed is too painful, or maybe your energy is so low that you can’t even get your eyes to open properly…

Maybe, like me, you don’t need to imagine this at all. Maybe you live with a chronic illness that makes your life unpredictable and very VERY frustrating.

When you have a chronic illness it can be quite easy to be hard on yourself for all the things you struggle to do, or simply can not do, on a daily basis. These things can be as simple as taking a shower or brushing your teeth. Things that others may take for granted.

One tool that I’ve learnt to have in place to help me and my extended family and friends cope better with my multiple chronic illnesses is to find a way to separate myself from the illness. When I’m unable to do something, I (usually) remember that I shouldn’t be angry or frustrated at myself. It’s the illness and it’s symptoms that I should be angry and frustrated at.

A great way I’ve found to separate me from my conditions, is to personify my illnesses (or at least the main symptoms I face). The characters I’ve created are Foggy Frog and the Pain Gang. By personifying my symptoms in this way I can say things like “it’s Foggy Frog that is making it difficult to make a coherent sentence today” or “Stabbing Spider that has taken my breath away.”

Having this separation between myself and my illness helps me keep a positive and open attitude towards my life. It gives me room to focus on the things I can do or the things around me that I can be grateful for.  I can focus on all the things I am; I aim to live as simply, sustainably and meaningfully as possible. I am passionate about working with others. I am a loving wife and caring friend. I am an advocate and an educator. I am not just my illness!

The separation also helps with my relationship with my husband. When he’s frustrated at what I can’t do, we can both be angry and frustrated at the illness and I don’t feel the need to take things too personally. We are able to talk openly about how we feel and, as long as we can maintain the separation between me and my symptoms, the anger should be aimed at the illness and not me.

The idea of separating yourself from your illness is generally discussed from the point of view of mental illness such as OCD, Schizophrenia, Bipolar or Depression, but I’ve found it useful living with physical conditions such as Myalgic Encephalomyelitis and Fibromyalgia and I’m sure it can be applied to many other conditions.

Chronic illness makes life difficult at the best of times. Having to deal with both constant and unpredictable symptoms can take a major toll on your self esteem and general mental health. However, by separating ourselves from our illnesses we can nurture a healthier relationship with our bodies, our lives, and our families that will allow us to remember who we actually are. We are not our illnesses.

What techniques do you have in place to separate yourself from your illness or to otherwise maintain your mental health?

Working with chronic illness: My experience

Back in December of last year, I answered a reader’s question about pacing and working. In this post I talked about some of the issues we face when we’re attempting to work with a chronic illness. We talked about our inability to be consistent and some simple tips and tricks for trying to avoid crashes as a result of working.

It’s been about 6 months since I wrote this post and in that time I’ve been gradually increasing the amount of work I’m doing myself. I’ve been very fortunate that, although I was unable to keep the job I was in prior to my first major crash, I’ve been able to use the connections I’d made when I was working full time to get establish a very flexible working environment for myself since then.

Back in 2013, I was working full time, studying full time and exercising every day (daily walks and gym at least 3 times a week). That all stopped suddenly when I woke up with pelvic pain so bad that I ended up in the emergency department all day while they tried (and failed) to work out what was causing it. I took a few days off on sick leave and then attempted to return to work even though the pain hadn’t gone and the fatigue was getting worse by the day. Obviously, that wasn’t working so I was yet again on leave.

At the time I thought it’d just be a few weeks and I’d feel better and be back at work. I had test after test to try and work out what was wrong with no clear results. As the weeks dragged into months I began to despair that I would never be able to get back to work.

Overall, I had almost 2 years without working at all before I got to a point where I felt confident with my ability to maintain some semblance of consistency and began to look at returning to some form of part time work.

Initially, I attempted to return to my previous role in a part time capacity, however my employers weren’t keen to take on the liability of having me there if I was to get worse again once starting back at work so I began to look into other options.

I have always wanted to work for myself and both E and I saw this as an opportunity to see how I would go with self employment, however I still wanted to have some form of ‘regular’ income coming in.

While looking at self employment opportunities, I approached an old boss to see if he had any casual work available for me to do as a means of seeing how I go with adding work back in. He did and he’s been great ever since then. Originally I thought I’d be able to build up to 8 hours a week of work for him within a few months but I quickly learnt that this wasn’t realistic. To this day, I sometimes manage that level of work for him but most weeks I only manage an hour or two a week (and some weeks none at all).

Having a boss who has been aware of my limitations from the start and willing to be flexible about how much work I take on has been great. I take on the jobs that don’t necessarily have a fixed deadline as they’ve been waiting for so long for clients to provide their data and so it’s not a big concern if I’m unable to complete them as quickly as I’d like. I’m also able to work from home which is a huge benefit as the few times I’ve attempted to head into the office to work, I’ve ended up paying for it after.

Although I like the fact that this work is paid by the hour, I’m able to work from home, and my boss is extremely flexible, it’s not the type of work I’m really interested in doing long term. This is where self-employment has come into play.

I’ve got two distinct areas that I’m working in from a self-employment perspective, both of which I’ve joined together under the LiveKen banner.

The first, and at the moment the largest (bringing in the most income), side of the business is environment and sustainability consulting work. I reached out to my contacts at the local councils to see if anyone had small manageable projects they needed a consultant helping on. I made it clear that my biggest interest was in developing and delivering workshops for the community around living simple, sustainable and meaningful lives but that I would also consider research based projects that fit within my skill and knowledge base. From this initial call out I got two projects:

• Developing a 3 year Environmental Management Plan for the City of Prospect. This has been a large and ongoing project and we’re about half way through the process now a year on from when we initially started. It’s been a great project with lots of community and staff engagement.
• Developing a series of Biodiversity Trails for local schools within the Campbelltown City Council. This was also a large project for me and took me much longer than I expected to complete thanks to the ups and downs of my health.

From doing these two projects I’ve learnt a lot about my current capabilities and about the processes and people I need to have in place if I’m going to be successful at working for myself and delivering projects on time and within budget for my clients while maintaining (and if possible improving) my health.

I’ve learnt that when proposing timelines for larger projects like this, I need to schedule in additional time than I think it will take me to allow for crashes and other health related delays. It’s also good to have someone lined up as a backup person (a subcontractor) to complete the work if my health gets to a point that I’m unable to do it.

These two large projects have also led to a few workshops with schools and the Council libraries on topics such as revegetation and up-cycling materials. These have been great for me because, although they don’t pay as well, they have a clearly defined timeframe and allow me to connect with a large group of people within a short space of time. I do need to make sure I schedule time to rest both before and after these workshops but because there’s no ongoing ‘stress’ related to completing them, I seem to recover quite quickly afterwards.

The second branch of the business is invisible illness advocacy. This actually started before I’d established LiveKen, with the idea of a picture book about invisible illnesses and chronic pain. The successful Kickstarter campaign we ran for the Foggy Frog and the Pain Gang picture book, has allowed me to focus on finishing the pictures with the knowledge that I will be able to publish and over 100 copies of the book will be going out into the hands of people who live with an invisible illness to share with their friends.

This is another project that has taken me MUCH longer than I expected it to. We are finally at the point where I’ll be getting quotes for printing within the next few weeks so keep your eye out for more information about this in the next month or so. The plan is for the picture book to be the first step in a larger awareness raising campaign.

This post is getting quite long, so I might stop there today and do a detailed hints and tips post later.

What tips or tricks do you have for working with a chronic illnesses?

An Update to the 100 Goal Challenge

One of the most popular posts on the blog here seems to be the 100 Goal Challenge post, so I thought I’d do an update on where I’ve gotten in almost 2 years.

As a reminder I broke my goals down into my Defining the Best ME categories (Mental, Physical, Wisdom) with some actions fitting into more than one category.

1. Start/Run my own business
   • I’ve achieved this one! Once I worked out I wouldn’t be able to go back to my full time job at the Council, I began doing some consulting work. My business, LiveKen, focuses on helping others to live simple, sustainable and meaningful lives with or without chronic illness. At the moment I’m focused on finalising the Foggy Frog picture book, helping one local Council to develop a 3 year Environmental Action Plan, and another to develop a biodiversity hot spot map and fact sheets for local schools.
2. Have 2 children/start a family
   • Not yet, as per my recent posts E and I are currently discussing our options. I have a few health issues that need to be sorted out before we can begin trying.
3. Develop/run educational resources/sessions for business, community and schools/unis
   • See number 1 – I’ve started doing this. I’d like to increase this over time.
4. Visit the Great Barrier Reef
   • Not Yet.
5. Visit Tasmania
   • Not Yet.
6. Work internationally
   • I have in the past but would like to again.
7. Travel to Europe/UK
   • Not Yet.
8. Do 30 minutes walk/run/ride daily
   • Building up slowly, currently doing a short ride every 2-3 days but no dedicated walks (just step count that I mainly get around the house).
9. Daily yoga
   • Hit and miss on this one at the moment.
10. Daily meditation
    • Most days I get this.
11. Travel to Africa/See wild Gorillas
    • Not Yet.
12. Participate in 12hr Rogaine (I did this when I first got ill – before I realised how serious it was – and would love to have the energy/low pain levels to do it again)
    • I participated in a 4hr one on the weekend (managed about 2 and a half hours).
13. Contribute to charity regularly
    • I contribute to charity on an adhoc basis at the moment.
14. Publish Foggy Frog Picture book

    

    The dummy book for Foggy Frog…

    • This is much closer now! Today I’ve finished the inside pages (we need to print to check colours), we now just need to design a few cover options for our backers to vote on.
15. Work nationally
    • Have done in the past but want to expand current business when I’m up to it.
16. Have annual holidays
    • We do this, at least a short camping trip each year.
17. Build own house
    • Not Yet.
18. Annual income of $100,000 (This one I’m really not sure about, I’d be happy with earning just enough to live off, but the process said to dream big so that’s what I tried to do)
    • Not yet, and still not sure about this one… I may end up changing it next time I review.
19. Retire with enough financial security to continue annual holidays
    • Not yet, but I think we’re on track to do it.
20. Celebrate our 50th wedding anniversary

    

    On our Wedding Day
    Photo (c) M. Vovers, 2011

    • It’s our 5th this year (a 10th of the way there)!
21. Continue to learn something new each year
    • I believe I’m on track with this. I’m constantly trying new things.
22. Learn to sew my own clothes

    

    Patterns I’ve bought but not sewn yet

    • Still just doing basic sewing at this stage (pillows, napkins, blankets, etc)
23. Live as sustainably as possible
    • Working on this one… I’m still decluttering and removing unnecessary items from our lives, aiming to buy second hand as much as possible, and reducing our waste stream as much as possible.
24. Complete my Bachelor of Education
    • I have decided not to continue with this one, instead I’m aiming to complete my Certificate IV in Training and Assessment.
25. Help others live sustainably

    

    The last campaign I ran before getting ill in 2013. Focusing on riding and travelling to work.

    • Working on it. I discuss ideas in my blog, and I’m working with local Council’s to move communities towards more sustainable options.
26. Help others understand chronic illness
    • Working on it… The picture book will be out soon
27. Have monthly dinner parties with family and friends
    • This has not been happening so far.
28. Have monthly games afternoons with friends (board games)
    • This hasn’t happened monthly, but we have had more games afternoons than in the past.
29. Clean out old and unused things and give to people who will use them
    • I’ve been doing this, but it is an ongoing process.
30. Set up my own space for sewing, drawing and studying
    • I now have my desk set up in the study for drawing and studying, and a small desk for sewing in the spare room.
31. Plant and maintain veg garden

    

    Our veggie garden last year

    • There is currently nothing in our veggie garden apart from herbs but I’m working on this one.
32. Find a mentor(s) to help me achieve my goals
    • I think this is an ongoing thing… Just taking advice whenever I can from whereever I can.
33. Schedule time weekly to reflect/review my goals and achievements
    • I’ve been keeping a daily journal instead.
34. Achieve work/life balance (need to work out what this actually means to me)
    • This is my focus this year, I feel I’m finding more balance at the moment.
35. Have a weekly ‘date’ with E
    • We aim to do something together each week, even if it’s just a games night at home.
36. Pay off our mortgage
    • We’re working on this one. Thanks to support from E’s parents we have gotten the mortgage below $100,000.
37. Only buy quality items
    • Ongoing, but a focus whenever we buy things.
38. Save 10% of my income
    • Ongoing, I have set up an automatic transfer to put $45 into my Super account each fortnight (retirement fund here in Australia) and automatically have 10% of anything I earn through my casual work go to Super. I haven’t worked out if the $45 a fortnight will add up to 10% of what I earn through consulting this year yet.
39. Organise a financial plan
    • I have a very simple 5 year plan written up and a budget that we work within (I try and keep it flexible as long as we don’t go into debt throughout the year). I haven’t fleshed out the plan with detail yet.
40. Teach my children how to save, invest and create wealth for themselves (need to teach myself this first so I know what I’m talking about… still not too clear on investments and wealth creation)
    • Slowly teaching myself through reading books and blog posts on financial management so that when we have children I can teach them.
41. Teach my children to live sustainably
    • Need to have children first!
42. Ensure I have regular health checks
    • I see my doctor and specialists regularly.
43. Read every week (would love daily if possible)
    • I read a lot of blog posts these days, I want to work on reading more physical books as well.
44. Learn to live a fulfilling life with my chronic illnesses

    

    Retrieved from Facebook.

    • Working on it! I’m getting better at pacing and have managed to add in activities that fit with my values and make me feel like I’m contributing to my community.
45. Swim regularly 1-2 x a week
    • Waiting for our local pool to open as there really isn’t anything close to us at the moment.
46. Visit T in Hong Kong
    • Not yet, planning to visit her this year some time (she’s coming here this week to go camping with me and E over easter).
47. Develop networks to help make my ideas reality
    • Working on it.
48. Visit Japan
    • Not yet.
49. Teach my children to cook
    • Need children first.
50. Schedule time to draw
    • Haven’t made this regular yet.
51. Learn to belly dance
    • Not yet.
52. Get a family dog
    • Not yet.
53. Participate in a yoga/health retreat
    • Not yet.
54. Find a hobby E and I can do together (used to hike regularly but I’m not up to that at this stage)
    • We’ve been playing a lot more games together. I’m hoping to add short walks back into our routine.
55. Learn to be more assertive
    • Working on it.
56. Get monthly massages
    • I’ve been using my massage chair regularly.
57. Learn to play the guitar better
    • Not yet.
58. Write 2 blog posts a week
    • Most weeks I’m achieving this, some weeks I only manage 1 if I’m extra busy or in a crash.
59. Spend a day by myself every 6 months focusing on reviewing and renewing my goals and plans
    • I’ve done this maybe every 12 months so far, I still would like to increase it to every 6 months.
60. Find a weekly routine that works (I feel very flustered lately as I can’t settle into one routine with things changing all the time)
    • This is still constantly changing but I’ve found a flexible schedule works better for me. Instead of a fixed routine I’ve been working to only schedule 2-3 activities a day and leave a lot of space so I don’t get flustered.
61. Write a will
    • Not yet.
62. Go on a 4 week holiday by myself
    • Not yet.
63. Write regular articles for other blogs/websites/media sources
    • Not yet. I need to be more consistent writing for My Invisible Life and other people who have contacted me.
64. Learn to cook more delicious and healthy dairy and gluten free meals
    • I’ve increased our repitoire of meals but this is an ongoing goal.
65. Spend time in nature regularly

    

    A bird bath on a community walking trail near work.

    • I try and spend some time outside each and every day.
66. Enter writing competition and win
    • Not yet.
67. Organise an annual event to raise awareness of, and funds for research into, chronic illness
    • Not yet.
68. Act as a mentor for someone
    • Not yet.
69. Have quarterly girls nights/afternoons/days with my closest friends
    • I’ve caught up with people a bit more regularly but not quarterly yet.
70. Get Foggy Frog into libraries, schools and homes around the world
    • I’ve had one library contact me already. I need to publish the book first though.
71. Keep a gratitude jar and read the contents yearly

    

    My gratitude corner (bedside table)

    • I’ve moved away from the gratitude jar, instead I include gratitude in my weekly ‘Share My World’ post and write in my journal.
72. Create a neighbourhood/community sustainability group to catch up and share ideas
    • Not yet.
73. Be present and mindful every day
    • I’m getting better. This is a work in progress goal.
74. Develop a morning and evening routine
    • Morning – check emails in bed, dress (shower if necessary), breakfast and tea, one major task.
    • Evening – dinner, tv with Erik, teeth and pills (shower if necessary, sponge bath otherwise), journal, meditation.
75. Keep a regular journal
    • I’m using it to track my daily activities. I set up to 3 activities each night for the next day and then add extra if I manage more during the day.
76. Incorporate physio recommended exercises/stretches into daily life
    • I’m doing this. I do my pelvic stretches throughout the day and I’m currently focused on maintaining my step count.
77. Declutter my life
    • Working on it, I’ve removed many items from our house but still working to declutter my calendar and feel that this goal is an ongoing work-in-progress kind of goal.
78. Spend a weekend away with E every 6 months
    • This hasn’t happened but we have had a few weekends away in the last few years and have a few planned for this year.
79. Learn more about business management and marketing
    • I read blogs and books to help me better understand what I should be doing with my business.
80. Deliver a TED talk (about my work and education programs?)
    • Not yet.
81. Smile every day

    

    Christmas 2013…

    • I think I’ve achieved this one… To be honest I haven’t tracked it but know that I smile quite often.
82. Learn to deal with conflict
    • Working on it. I’m getting better at dealing with conflict and standing up for myself.
83. Write every day
    • I write my to-do list every day. Once a week, I write my blog posts. I would like to add more writing.
84. Frame our pictures and display them in the house
    • Not yet, reconsidering as I’m reducing the amount of ‘stuff’ in our house.
85. Interact with people who support my vision
    • Doing this as much as I can.
86. Make a firm career decision and pursue it
    • Still working on this. I’ve got a vague idea of where I want to go but need to clarify some details.
87. Be well regarded and respected for my work
    • Not something I feel comfortable judging for myself but from the feedback I get I’d say I am.
88. Develop a realistic business plan, implement the plan and follow through
    • Because of my health I’m still struggling to develop a realistic business plan that can be implemented and followed through. At this stage I’m just working to complete the projects I have already and then I’ll reassess this.
89. Assist 10 people to live a fulfilling life with a chronic illness
    • Not yet, working on it.
90. Get my superannuation strategy working for me
    • Working on it, I’m making sure that I get something into my super regularly.
91. Maintain a healthy weight
    • My weight has stayed about the same for the last few years.
92. Have regular skin checks
    • Had one a year and a half ago. I believe they suggested every 2 years.
93. Have monthly goals to focus on
    • This hasn’t been working for me. I need to reassess the goals that I set.
94. Build a team around me to help me reach my goals
    • Working on it.
95. Be around for my children as much as possible
    • Need children first.
96. Visit my Uncle in Vietnam
    • Not yet.
97. Buy local as much as possible
    • I try and do this. Still working on improving this.
98. Focus on experiences not possessions
    • Working on it.
99. Eat vegetables with every meal
    • Mostly.
100. Focus on the good things in life

     

     I found this little guy while walking with a friend Christmas Eve 2012… He made us smile, we took photos but left him for others to find and enjoy as well.

A quick No Buy Challenge Update: I did swap one top I hadn’t worn in over 6 months for a new striped top which I’ve already worn 3 times in the last week. Other than that no purchases for me this week.

Have you completed your 100 Goal Challenge?

If so, what have you learnt from reviewing the goals you’ve set?

If not, has my list helped you identify a few more things you could add to your own?

Share Your World: Week 4

I can’t believe it’s almost the end of January already and we’re up to week 4 of 2016!

So far this year I’ve been struggling to maintain my balance. If I look at it from a week or month point of view I’m doing ok but on a daily basis I’m still struggling. Some days are crashed on the couch and unable to do anything much other than listen to an audio book or the tv in the background. Other days I’m rushed off my feet trying to do appointments and out of the house activities… I haven’t worked out the balance there yet.

It’s difficult for me to work out how to do this properly because I see the benefit of not having to drive more than once or twice a week (it’s still an activity that wears me out a lot) but then it means those days I am out I don’t manage to pace my step count, I don’t get my usual rest breaks, and I just over do it in general.

I’m also struggling to get any sort of regular routine in place for work activities. I’d love to be doing at least a minimum amount of work each week but Foggy Frog seems to be my constant companion again and he’s making it very hard for me to do anything for more than 5-10 minutes at a time with any hope of having reasonable results.

How do you pace yourself with activities outside the house or with adding in any work?

Anyway, being Thursday today, it’s time for another round of Share Your World.

What one thing are you really glad you did yesterday?

Yesterday was one of those super full days where I over did it. That doesn’t mean there weren’t things I achieved that I’m really glad to have done though…

I managed to make it in to town to have lunch with E and one of his work colleagues before heading to the meeting I had in the afternoon. This is something that I really enjoy doing as it doesn’t happen very often these days unless I have a medical appointment in town.

Are you generally focused on today or tomorrow?

I do have a habit of focusing on things that I feel are important or scary that might be happening in the future but these days, thanks to the uncertainties related to my health, I’ve gotten a lot better at just focusing on one day at a time. Most weeks I don’t even look at my calendar in advance unless I’m booking something in. I might check it the night before when I’m getting ready for bed or when someone asks me what I’m doing.

Would you want a guardian angel/mentor? What would they tell you right now?

A mentor (or several mentors) provides inspiration, advice and guidance to help you succeed the best in life. Yes, I’d want that in my life and look up to several people in my life now as mentors.

Right now my mentor would be telling me to remember to be gentle with myself. As you might be able to tell from the last few posts I’m feeling very frustrated about my limitations at the moment. I’m wanting to do way more than my body will actually allow and I’m struggling to accept it. If my mentor was here right this minute they’d be reminding me that my health is the most important thing, without it I can’t do anything. They’d be telling me to continue to listen to my body and rest when I need to, to accept where I am at the moment, and to not set unrealistic expectations for myself.

Would you rather live in a cave house or a dome house made out of glass? (photos of the houses found on google search)

I love the idea of both but my dream house would be a dome house that’s built into the ground with lots of glass… something like this.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the understanding and support of the wonderful people in my life. I realised in the last few weeks that I’m not going to meet my deadline for one of my consulting jobs. When I contacted the client to let them know they’ve been very understanding and said there is no rush and to just work on it as quickly as I can.

Being able to spend time with my friends has also been very satisfying.

In the next week I’m looking forward to talking with my doctors about some test results I got in the last week and hopefully getting some guidance on how to approach the issues that have arisen (More to come in an upcoming post on this).

“You’re looking good”…

I’ve lived with chronic illness to some extent my whole life but for the last 2 1/2 years illness has been a major contributing factor in my life.

One thing I’m noticing more and more as I learn to accept, and live with, my chronic illnesses and the disabling symptoms they impose on my daily life is the innocence and ignorance of many who do not suffer from them.

It’s not only what’s happening in my life, but what I hear from others online and in person who are also suffering from invisible chronic illnesses.

The key word there is INVISIBLE…

Whenever I meet people in public I’m asked “How are you going?” or told “You’re looking good” and when I hear these things I never know how to reply.

On the outside I look like any other healthy person.

I walk normally most of the time (no obvious limp) although this can be difficult when I’m in a lot of pain or when the fatigue is so bad that my legs feel like lead weights. I look bright and happy (because I am happy) even when inside my body is screaming at me and my brain is in a dense fog.

Yes, I may ‘look good’ but I don’t feel good but I don’t want to be a downer for everyone around me so I don’t necessarily want to tell people I feel like crap.

How should I respond to these comments and questions?

I’ve seen different responses online from others going through the same thing.

Some people keep all the pain and suffering inside. They tell others they’re fine and try to ignore what’s going on then get upset and angry at the people asking the questions because they don’t understand.

Others tell anyone and everyone what’s going on with them. This can lead to people getting frustrated at you. People can begin to think you’re not really as sick as you say you are.

Personally, I think something in between is the best road to take. When answering questions or talking to people about our health we should take into consideration who we’re talking to and what their relationship is with us.

Even those closest to us don’t need to be constantly told what we’re feeling. Yes, they need to understand but we also need to understand it can be hard for them to cope, especially if you fell ill after you were close.

Responding to “You look good”

If I don’t know the person at all, I’d just reply ‘Thank you’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘Thanks, I don’t feel that good’.

If I’m close to them I might share more detail about how I’m feeling, especially if how I’m feeling will impact on what we’re planning to do together.

Responding to “How are you?”

If I don’t know the person at all, I’d just reply ‘Fine’ or ‘OK’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘As well as can be expected’. If they’re interested I might go into more detail afterwards.

If I’m close to them, I’d give a similar answer to above but would usually give them more detail.

How do you respond to well meaning but difficult questions and comments?

National Pain Week 2015 Australia

It’s National Pain Week here in Australia and I’ve been doing my part to raise awareness.

Check out my story over at My Invisible Life, and my top 3 tips for living with chronic pain over at LiveKen.

It’s been a while since I’ve posted here and that’s for a couple of reasons:

1. As previously mentioned, I’ve transitioned most my blogging over to the LiveKen website.

2. I accidentally locked myself out of the site and had to get technical help to get back in here!

I’m still planning to do most of my blogging over at LiveKen, so if you haven’t already I encourage you to follow us there, but I’ll drop in here to do an occasional post.

30 Things About My Invisible Illness You May Not Know

Next week (8 – 14 September 2014) is Invisible Illness Awareness Week. I will share my ‘Just One‘ story with you next week. Today I’m completing the 30 Things Meme.

1. The illness I live with is: Pelvic Congestion Syndrome, Fibromyalgia, ME/CFS, plus several other conditions (asthma, osteopenia, allergies, etc)
2. I was diagnosed with it in the year: 2013 (asthma and allergies since early childhood)
3. But I had symptoms since: my whole life
4. The biggest adjustment I’ve had to make is: redefining what success means to me and what I can realistically achieve in any set time period.
5. Most people assume: That pain and fatigue is ‘normal’ and that it is manageable.
6. The hardest part about mornings are: Getting Started…
7. My favorite medical TV show is: This varies a lot but at the moment, One Born Every Minute
8. A gadget I couldn’t live without is: My food processor… it makes making meals easier
9. The hardest part about nights are: The pain
10. Each day I take 6 pills & vitamins. (No comments, please) – this is likely to go up again soon thanks to the low bone density.
11. Regarding alternative treatments I: consider all options and try out anything that seems reasonable
12. If I had to choose between an invisible illness or visible I would choose: This is difficult, but I think I’d say stick with what I know…
13. Regarding working and career: I don’t know what is happening anymore… everything’s been on hold for well over a year now and I haven’t really made much improvement recently.
14. People would be surprised to know:  I’m not depressed! I’ve managed to keep a positive frame of mind the majority of the time.
15. The hardest thing to accept about my new reality has been: The uncertainty. 
16. Something I never thought I could do with my illness that I did was: Raise $,7500 to publish the Foggy Frog picture book (still in progress).
17. The commercials about my illness: I haven’t seen any for the main ones.
18. Something I really miss doing since I was diagnosed is: Walks/Hikes with my husband.
19. It was really hard to have to give up: Control. I never know what I’m going to be like and I can’t do everything I’d like to any more. My ‘ideal’ timelines for things like starting a family and major holidays have all gone out the window.
20. A new hobby I have taken up since my diagnosis is: Blogging and sewing
21. If I could have one day of feeling normal again I would: Go on a hike with my husband and have a lovely dinner out.
22. My illness has taught me: To listen to my body and be more assertive with what I need/want.
23. Want to know a secret? One thing people say that gets under my skin is: Everyone gets tired/sore
24. But I love it when people: Visit me at home for games/a meal.
25. My favorite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them: Listen to your body and do what is best for you. 
27. Something that has surprised me about living with an illness is: I’m able to cope with much more pain and exhaustion than I thought was physically possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Make me breakfast in bed and gave me permission to just rest.
29. I’m involved with Invisible Illness Week because: I feel it is important to raise awareness of what people actually go through. These illnesses aren’t really well understood in the general public and this is an important first step in creating a more understanding community.
30. The fact that you read this list makes me feel: Grateful. You have taken the time to try and understand a bit better what it is I go through on a day to day basis.

Post #200 – a reflection on My Chronic Life Journey to date

Thank you all!

I wanted to take the time today to say thank you to all of you; those of you who have been following from the start and those of you who have just started following me here.

This blog started as a place for me to share my progress with my illness (at the time undiagnosed) with my family and friends who were interested but I didn’t see much. It has grown into so much more!

With the support and input of many of you, we have begun the process of setting up a campaign to help raise awareness of chronic illnesses that don’t have visible symptoms. The Foggy Frog picture book, which many of you helped fund, is on it’s way to being published either later this year or early next year. Once it is published we’ll begin promoting and considering what the next phase of this campaign will be. One thing I do know is that the campaign will be being run through LiveKen, a business we’ve established for this campaign and to help people discover how to live simple, sustainable and meaningful lifestyles.

Together we have defined what it means to be mentally strong when living with a chronic illness.

You have been with me as I have been diagnosed, first with Pelvic Congestion Syndrome then Fibromyalgia and ME/CFS, and while I’ve been experimenting with different treatment options.

Looking back I can see that I have improved a little, and we have achieved a lot, in less than 12 months. For example, I am now able to do some basic housework and cooking and have been exercising daily. Both things I would not have been able to do when I first began this blog from my couch.

So, THANK YOU, to each and every one of you who have been a part of this journey and please continue following and sharing with me both here and over at LiveKen as we continue on our journey and discover how to live a life that is meaningful and fulfilling with multiple chronic illnesses.