Tag Archives: Myalgic Encephalomyelitis

First Trimester: Pregnant with chronic illness

06 Jun 17
Megan
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It’s my birthday and I’ve finally found some time to write!

As you’ve probably guessed I haven’t found the time and energy to write regular posts for the blog during this pregnancy.  As I mentioned in my last post, where I announced the pregnancy, I want to discuss what this pregnancy has been like for me. Starting with the first trimester, I’ll do a summary post for each section of this pregnancy.

Before I was pregnant…

As my regular readers would know, I’ve been living with Fibromyalgia and Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) (ME/CFS) for at least the last 4 years. I say at least the last 4 years, as that’s when it began to impact my life significantly. It got to the point that I stopped working and studying full time, and basically had no social life for a year or two.

During those first few years I spent a lot of time with doctors and specialists trying to get a diagnosis and working out what treatments and strategies worked (and didn’t work) for me in terms of managing the conditions.

Last year, I finally reached a point where many of my specialists were saying I was as well as I was going to get and that if we did want to start a family it was time to consider trying. After much discussion and research we decided that the potential risks were worth it and so we decided to start trying.

As a result, I stopped all my prescription medications (apart from seretide and ventolin for my asthma) and began focusing on other coping mechanisms.

The First Trimester…

Everything happened very quickly once we’d made a decision and I think both E and I were in shock to start with that it was all actually happening.

The research that we had done indicated that, for both the Fibromyalgia and the ME/CFS, a third of people feel worse during pregnancy, a third stay the same and a third improve. One of our biggest concerns was that I would be in the third that felt worse.

Thankfully that hasn’t been the case.

In fact, even though I suffered from bad morning sickness from before I even found out I was pregnant, my pain and energy levels actually improved during the first trimester. Enough that when we went on holidays to Queensland I was able to enjoy the trip a lot more than I thought I would.

Yes, I still had to rest daily and we had a couple of ‘do nothing’ days but I also managed to swim on the Great Barrier Reef and participate in a walk in the Daintree Rainforest.

Towards the end of the first trimester, my chronic illness symptoms settled back to what I consider to be ‘normal’ levels for me.

First Trimester Symptoms…

My main symptoms during the first trimester were:

  • constant nausea and ravenously hungry at the same time for the first 7 weeks
  • Increased energy for the first 7 weeks (less need for naps during the day)
  • Morning Sickness (vomiting started at 8 weeks and lasted through to 17/18 weeks)
  • Cramping
  • Decrease in general Fibromyalgia pain levels

First Trimester Management Techniques…

As I didn’t have too many symptoms, I didn’t need to change much in the way I was managing my health.

It was important that, although I had decreased pain and increased energy for those first few weeks, I continued to pace myself and not let myself get too run down.

When pain levels got uncomfortable my go to treatment options, which were all in place prior to the pregnancy, included:

  • warm (not hot) baths and showers
  • wheat bags
  • regular acupuncture (3 weekly)
  • meditation and relaxation techniques
  • maintaining a basic exercise routine (stretching classes and regular daily step count)

The last few weeks of the first trimester, and heading into the second trimester, got more difficult to manage as the morning sickness and fatigue got worse. Those weeks were spent mostly resting to avoid any major crashes.

Overall, the first trimester went well. I coped reasonably well with the new pregnancy symptoms because pain and fatigue had improved.

I avoided posting on the blog during this time, mainly because I didn’t want to announce yet and I was worried I’d say something that would give it away!

Postnote:

Before I take a break to settle into being a new mum I thought I’d make an effort to write a few posts and schedule them over the next few months, so hopefully my posts will be a bit more regular than they have been so far this year.

Just be aware that I might not reply to comments regularly from July as I think I’ll have my hands full for a while.


Announcement… Big News! (a long overdue update)

07 Mar 17
Megan
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8 comments

You may have noticed I’ve been missing in action lately. There is a very good reason for this and it’s time to make an announcement… Life has taken a major turn in the last 6 months.

Not only did we launch the Foggy Frog and the Pain Gang picture book in September last year, and help to organise and host a national conference in Adelaide in October, but on a more personal level E and I are expecting a baby! Due date 6 July 2017.

Yes, you read that right! We’re over half way to meeting this much awaited new addition to our family.

Why has it taken me so long to make this announcement?

Simple. I wanted to tell as many people in person as we could before I announced online. If I do know you offline and haven’t had the chance to tell you in person yet, I apologise. I’ve tried my hardest to see as many people as I could over the last few months but I felt that I couldn’t really hold off much longer with making this announcement as I’d been avoiding blogging until I was ready to announce.

Pregnancy, Parenting and Chronic Illness

Those of you who have been following me for a while, or who know me in real life, know how important the idea of being a parent is to me. You would also know how much thought, research and discussion has gone into the process of deciding whether or not to try for a baby. We obviously made the decision to try, but it was not an easy decision to make.

Living with several chronic illnesses has limited what I’ve been capable of achieving over the past few years. I’ve very slowly built up my work hours and my capacity to exercise and participate in social activities to a point where I felt comfortable coping with whatever impact being pregnant and being a parent may have on my health.

I know that it’s not going to be an easy process but it’s something that is important enough to me that I’m willing to modify what I do to make this work.

Over the next few weeks I’m hoping to begin a series of posts that talk about what it’s been like so far being pregnant with fibromyalgia and chronic fatigue syndrome. While reading these posts please remember that I’m sharing my personal experiences in the hope they’ll help others.

What I experience may not be the same as what you experience. In fact, the research I did before becoming pregnant showed that people’s bodies react in very different ways to being pregnant with these conditions. There’s no way to know how it would impact you in advance. All you can do is have strategies in place for coping with the wide variety of possible outcomes.

Anyway, enough of me talking for now… I’m just so excited to finally be sharing the news. We’re going to be parents!!!

Hello in there!

I’ve joined a Gym! Exercising with Chronic Illness

26 Jul 16
Megan
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4 comments

A lot’s been happening around here lately! Preparations are underway for the Foggy Frog and the Pain Gang Book Launch and the AAEE 2016 Conference.

I’ve also added a bit more variety to my exercise routine by joining the new local gym (Council owned and operated).

The main reason I’ve joined is so that I could add swimming into my exercise routine but I’m also going to try out some of the classes they run.

Obviously, I’m going to focus on pacing and aim to not overdo it by adding too much too quickly but I’m very excited to have a bit more variety in what I’m able to do.

To date, my exercise routine has consisted of walks and riding my electric bike (or the stationary bike if it’s raining). I was doing some stretching and yoga, but this was very random (I wanted to do it but got bored of the same stretches over and over).

At the new gym I have access to an internal pool, aqua aerobic classes, body balance and mobilise (low impact stretching and weights) classes, and other gym equipment if I need it.

My plan is to use the pool twice a week, and try out the various low impact classes. In fact, I’ve already started…

After my swim on Monday...

After my swim on Monday…

I swam (8 laps of slow breast stroke) yesterday and today I tried out the Mobilise class. The class is stretching and light weights. I paced myself during the class; doing less repetitions, not using any weights and taking breaks when I felt I needed it. We’ll see tomorrow whether or not the class was too much for me but I think it was ok.

Outside of the gym, I’ll still ride at least once a week and go for walks with E (we’ve actually started playing that Pokemon Go game which has got us out of the house together more often).

The view from halfway through our walk on the weekend

The view from halfway through our walk on the weekend

Thanks to my current medication routine I’ve had less pain and slightly more energy than usual lately which has been great for allowing me to be more active.

What exercise do you do on a regular basis?

P.S. You may have noticed I didn’t post last week, because of everything going on at the moment I’m likely to be posting either once a week or fortnightly for the foreseeable future.

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

05 Jul 16
Megan
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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?

Are you feeling better? You’re looking good!

28 Jun 16
Megan
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2 comments

“Are you feeling better? You’re looking good!”

The other day, E and I were out celebrating the birthday of one of our friends. It was a dinner and dessert event, which meant a late night for me.

Because I knew we were having a late night I’d spent most the day doing quiet activities like reading and building the Lego I got for my birthday. Even though these were the main activities I did that day by lunch time I was struggling to keep my eyes open and my pain levels were rising.

I spent most the afternoon on the couch resting and thankfully I was feeling reasonably well when it came time to head to dinner. Still low energy and slightly raised pain levels, but not bad enough that I couldn’t focus at all.

At dinner, the venue was quite loud and I did struggle with focusing on conversations so didn’t even bother trying to keep up with conversation at the far end of the table. I did chat a bit with those at my end of the table but mainly just tried to listen.

When we got to where we were having dessert it was quieter so I began to join in the discussion again. At this point someone asked me if I was doing better because I looked a lot better than I had before.

Now, I’m always hesitant to answer this question.

Yes, at the moment I’m managing to do a lot more than I had in the last 3 years. I’m working and I’m socialising more. My energy levels are (ever so slightly) better than they have been (more stable), meaning I’m crashing less often, and my pain levels are relatively stable (although they’re beginning to fluctuate a lot more now that winter is here again).

If I just compared how I’m doing right at this moment with how I was 6 months or 2 years ago my answer would be a resounding YES, I’m doing better.

But I’ve felt better before, for a month or two, and then had a major crash which took me back to worse than I was to start with so I don’t want to jump the gun and say I’m doing better yet.

I believe the Testosterone cream is helping with my energy levels at the moment, but I am concerned about the side effects if I stay on it long term and I really want to have children at some point.

E was frustrated with me that I wouldn’t give a clear Yes answer to our friends and that I deferred to him and asked if he thought I’ve been doing better.

I did this because, up until recently, he’s always been able to tell (even before me a lot of the time) if I’m doing too much and about to crash. It seems that I’ve been able to perfect my ‘well’ face (the one I use to cover the fact I’m struggling) to a point where even he’s not noticing as quickly when I’m struggling with things.

That night out, I looked like I was doing well. For some periods of time I was, my energy levels were fluctuating dramatically going from able to focus to complete zone out several times during the mean. Normally E would notice these zone out times, but it appears he didn’t that night…

Do you struggle with people assuming you’re better because you ‘look’ better than before?

How do you decide how much to share?

Working with chronic illness: My experience

14 Jun 16
Megan
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2 comments

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?

Week 7 No Buy Challenge: Celebrations, side effects and PEM

19 Jan 16
Megan
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Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch... Water and tea, tablet and headphones, tv controller...

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

  • I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
  • High levels of pain down the inside of my limbs (especially my left leg).
  • Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

Share your World: Week 2

13 Jan 16
Megan
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Balance… My word for 2016… is difficult to achieve. I’ve got many ideas for posts but, in an attempt to maintain my balance, you’ll find for the next few weeks at least you will only be getting 2 posts a week from me… My No Buy Challenge update and this, my Share Your World post (although I will probably add a bit of commentary to each like this).

Although I have been keeping it in mind each day I still managed to do too much last week and crashing again on the weekend.

This week I’ve begun trialling yet another drug (Cymbalta this time) to see if it helps me with pain and fatigue. Thankfully my doctor recognises that I’m sensitive to drugs so we’re starting at a very low 10 mg a day.

Share Your World: Week 2

Do you believe in extraterrestrials or life on other planets? 

I don’t believe in extraterrestrials in the sense of the aliens you see in many movies but I do believe that the chances of life (in some form) on another planet are quite high. Given how large the universe is I don’t see how this can be the only planet on which life has grown.

How many places have you lived? You can share the number of physical residences and/or the number of cities.

I’ve only ever lived in South Australia, but given that my parent’s divorced when I was young and we moved around a bit I’d say I’ve lived in at least 8 different residences (this doesn’t count any housesitting that we’ve done.

If you given $22 million tax free dollars (any currency), what is the first thing you would do?

The first thing I would do is pay off the rest of our mortgage and any other debts we may have. After that I’d look at how to invest the remaining money so that it could provide us with an adequate annual income and we can make our own choices about where and how we live, work and play.

The Never List: What are things you’ve never done? Or things you know you never will do?

I have never been sky diving, bungee jumping or probably any other extreme activity you can think of.

I will never stop striving towards a simple, sustainable and meaningful life in which I can make a difference and help others.

I have never

I will never give up on my dreams. Chronic illness may have taken away a lot of my options but I will always find a way around it.

 

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 my husband when I was unable to do everything I wanted because of my health and for the opportunity to discuss options and trial new medications with one of the leading pelvic pain specialists in town.

In the next week I’m looking forward to continuing my daily meditation practice (something I’ve taken up in the new year).

Share your world: Week 1 2016

07 Jan 16
Megan
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Last year was not a successful year for me in terms of blogging. Not only did I not post much but the posts I was getting up weren’t that popular. So this year I’ve decided to get back to the sort of posting I was originally doing. Instead of just posting about things related to living a simple, sustainable and meaningful life with or without chronic illness I’m going to do a wide variety of posts that allow you to get a better insight into my life. I’ll talk about my work and social commitments, the ups and downs and the everyday. I’ll also participate in several challenges throughout the year. Right now that means participating in the 20 Week No Buy Challenge with Rach (this is week 6 now) and I’m going to participate in Cee’s Share Your World Challenge, a weekly posting challenge with the following format:

Each week Cee will ask you:

  • To answer three random questions each week.
  • Respond to a fourth item (I will randomly chose from this list)
    • Making a List out of a topic
    • Completing the sentence I start
    • Answering a Would you Rather question
  • Bonus Question is always the same  “What are you grateful for from last week, and what are you looking forward to in the week coming up?”  Because we all need to be reminded that there are many things in our lives to be grateful about.  

So here we go…

Share Your World – Week 1

As a child, who was your favorite relative?

This is a hard one for me to answer, growing up in a very large extended family with divorced parents (My parents each had multiple – 5 and 6 respectively – siblings and many of them had children which meant many cousins for me as well). I think in answering this question I’m going to have to expand it to “who were your favourite relatives?” as two stand out to me at the moment as being top of my list (the rest of you are still important parts of my lives and I love you lots but as a child these two seemed to be the most important in my life).

My mum

Yes, this may seem cliche but my mum has always been one of the most important people in my life and the one I knew would always be around to comfort me when I needed it.

She was the one that was there reading us bedtime stories, taking us on day-trip adventures where we’d hop on public transport and just travel for the day (this might mean the bus and a train trip or bus and tram).

She’s still the one I go to when I need advice. I can talk to her about anything.

My Aunty Rachel

Rachel is the youngest of my aunties. She’s only 9 years older than me and because of that I think I always felt she was more like one of us (my cousins and I) than one of the ‘older’ generation.

Growing up, she would have all of the cousins around to her place (when she had her own place with her boyfriend) and we’d share a meal or go to the beach. She was always participating in interesting activities like belly dancing and yoga and she always loved writing (she has her own blog now if you want to check it out).

I vividly remember when she moved away from Adelaide. I don’t remember how old I was but maybe early teens. We went with gran and some of the extended family to see her off at the bus station and I remember feeling like I was loosing someone very close to me. I’d say I was devastated, I couldn’t stop crying even after we’d said goodbye. I’m sure it was at least a good 10-15 minutes after she left that I finally managed to stop crying.

If you could be a tree or plant, what would you be?

I think I’d be like the weeping mulberry in our back yard.

Our weeping mulberry

In previous years it’s provided a place for birds to nest, it provides delicious fruit for both us and the birds, and provides shelter from the sun. In a sense it’s a nourisher and protector.

Delicious mulberries off our tree.

Delicious mulberries off our tree.

What would be your preference, awake before dawn or awake before noon?

I’ve grown up as a morning person so my preference would be awake before dawn. However, since being ill I no longer have the energy to be able to do that. My normal waking time is sometime between 8 and 9 am. Some days I may wake up earlier but if I get up earlier I would probably only make it until lunch time before needing to return to bed for the rest of the day.

Would you like to sleep in a human size nest in a tree or be snuggled in a burrowed spot underground?

For sleeping I’d prefer to be snuggled in a burrowed spot underground. It would be like a nice big hug, warm in winter and cool in summer insulated from the weather outside. During the day though, I’d love a human size nest to sit in and watch the world go by!

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

In the last week I’ve finally come out of my most recent major crash to a point where I can actually focus on work again. It’s been over a month since I last felt like I was actually being productive and useful when I attempted any work.

I’m grateful for the opportunity to spend time with my husband while he had leave over the Christmas/New Year break and for the support of those around me who act as mentors for me while I move forward on this quest of self employment and an overall simple, sustainable and meaningful life.

In the next week, I’m most looking forward to my appointment with my Pelvic Pain Specialist on Monday. It’s been 6 months since I’ve seen someone from their clinic and this time I get to see the main specialist there. I’m hoping to be able to get a bit more guidance on how to manage my symptoms given that all the medications recommended to me either don’t work or the one that did work for pain relief (it was amazing! Made me feel like I was floating on clouds. The only day in almost 3 years that I had almost 0 pain) set my asthma off.

I’m also hoping for clarification of what she thinks is the cause of the pain. Although I have been officially diagnosed with Pelvic Congestion Syndrome after a laparoscopy in 2013/14 (can’t remember exactly when) the other people I’ve seen at this clinic have suggested that it may still also be partly Adenomyosis or Endometriosis even though nothing was seen during the laparoscopy except varicose veins everywhere.

“You’re looking good”…

10 Dec 15
Megan
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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?