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?

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?

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?

Challenges and Lessons from our 20 Week No Buy Challenge

We’ve reached the end of our 20 Week No Buy Challenge and over the weekend Rach and I caught up to celebrate our successes.

In keeping with the No Buy theme, we celebrated with a homemade lunch of soup and sourdough bread with a glass of sparkling wine followed by homegrown peppermint tea and homemade peanut butter cookies.

Celebrating the end of our 20 Week No Buy Challenge with homemade soup and sourdough and a glass of bubbles…

As we ate we discussed the challenges we faced during the 20 weeks and what we felt we’d learnt.

My biggest challenge was sticking to the rule of not eating out if I was alone. There were several days where I found myself out and about longer than I had planned to be and in a position where I was contemplating takeaway food. Luckily each time this happened I either made my way to my mum’s and ate there, or someone was available for me to eat out with so I didn’t actually break the rules.

My second biggest challenge was accepting that some things that at the beginning of the challenge I classified as non-essential became essential purchases during the 20 weeks. The t-shirt I’m wearing in the photo above was purchased during the 20 week challenge but it was an essential purchase as I lost at least 3 of my t-shirts and 2 dresses to old age (they became see-through or massive holes that weren’t worth repairing were made while carrying big loads of things into the house). I also gave away a couple of t-shirts because I wasn’t wearing them (they weren’t comfortable on me or they didn’t go with enough of my other clothes). Thus the new t-shirt in the photo above…

Having said that, none of the old clothing went into landfill, I have either cut them up for rags (the see through and holey ones) or I donated them to charity or someone I knew who would get more wear out of them than I was.

Lessons Learnt

I’ve struggled a bit with identifying the lessons I’ve learnt during this challenge, mainly because I didn’t find it all that difficult to comply with and because a lot of what I ‘learnt’ I already knew (the challenge just reinforced it).

The main things it reinforced for me were:

Always prepare for the unexpected.

I could have avoided the unexpected needs for eating out by always taking at least a small snack with me when I leave the house. I did do this most times and it saved me a few times from having to buy something. I also took my zero waste eat out kit (straw, cloth napkin, bamboo spork) everywhere with me and used it on several occasions to avoid using disposables and most trips I took my keep cup as well.

If you can identify your values, it’s easier to say ‘No’ to the things that don’t fit with them but it’s also important to be aware of other people’s values as well.

The No Buy Challenge fit well with my values of being conscious of the impact my actions have on the environment and the wider community. There were several purchases we made as a family (E wasn’t participating in the challenge) that, if it was just me, I would not have made but that were made because they fit with E’s values. There were other purchases we considered that I said No to because they didn’t fit well with my values and I couldn’t see any long term benefit for anyone in the family.

Each of us are individuals and we need to make compromises at times if we are to maintain healthy relationships. We need to set our own boundaries about what is acceptable and what isn’t.

Buying is the cultural norm and it’s difficult to move away from these habits.

Although I’ve never been a big spender, participating in this challenge made me more aware of the times where, in the past, I would’ve just made a purchase without really thinking about it. Even most of my few purchases during the challenge (the earrings early on, a duplo set and a few children’s books secondhand, and the t-shirt mentioned above) were made without much thought about them before hand. It was only after I bought them that I actually considered what they meant in terms of the challenge.

Rach had a lot more trouble with this than I did, there were several times during the challenge where she contacted me because she was considering a purchase and needed to discuss the options and whether they were actually essential. She also found that she enjoys shopping and for that reason alone it was difficult to stop.

Not buying new things makes you appreciate what you have.

Both Rach and I removed things from our houses during this challenge. Rach gave several bags of clothes to charity and took the time to assess what she has in her wardrobe. I, as mentioned above, lost several items of clothing to old age and gave away a few items that I didn’t wear.

We’ve both realised that we have enough, and for some things (clothes in particular) more than enough, in our lives. We are grateful that we live in a society where we have choices for clothing, shoes, kitchen appliances and other household items. We are not living below the poverty line and don’t need to struggle to meet our basic needs.

I like making conscious choices that align with my values.

Although it takes more time, during this challenge I’ve added several more homemade items to our lives. As well as the laundry liquid, cloth napkins, peppermint and fruit we already make or grow, I’ve been trying my hand at making my own sourdough bread (so far no reactions) and other ‘old fashioned’ recipes that are better for my health and the environment.

Although there are a few purchases I now need to consider making (new underwear and sandals to start with) I’m still going to be conscious of my purchases and my allocation of my time and resources. This No Buy Challenge has helped me to progress my larger challenge of living a simple, sustainable and meaningful life.

Did you participate in the challenge?

If so, what did you learn? If not, would you consider a challenge like this in the future?

Treatment for Low Testosterone in Women…

I hope everyone has had a wonderful Easter weekend.

We spent it in the bush camping helping friends set a rogaine for later this year. Most days I hung around the campsite, with a short walk with T during the day while the others were on long hikes setting check points. I did join them on Sunday when half the points were only short walks from the car, this was another big day like the rogaine the previous weekend but I did make sure that I rested a lot as well by staying at the car and meditating while the others went on longer walks.

Over the weekend I had a lot of time to think and reflect on how things have been going lately.

I’m still working on finding balance in my life but have realised that having a set routine doesn’t work for me. Instead pacing, and continually reassessing and adjusting to create balance over a longer time period instead of trying to balance activity within any given day.

I’m feeling very positive about my progress. As I mentioned last week, I’ve had a few full on days lately (think double my daily average step count without many rest breaks) but haven’t had any major crashes. I have had a few single crash days but have been back to ‘bad’ by the next day.

I’m attributing at least part of this improvement to the nortriptyline I started taking about a month ago, and I’m hopeful that the testosterone cream I started on the weekend will improve things further.

I’ve started the testosterone because my free (available) testosterone levels in my blood stream were almost non-existent. This could explain several of my symptoms including the fatigue, sleep issues and an increased risk of bone loss (I’ve been diagnosed with Osteopenia – the step before Osteoporosis and the doctors haven’t found a reason for the continued bone loss after stopping the Depo Provera over a year ago). It can also cause low libido.

There are side effects I have to be aware of including increased hair growth in the area I apply the cream, lowering of my voice, and acne. Because the side effects can take a while to appear and too much testosterone can have even greater impacts on my health, I need to have a follow up blood test in 3 weeks to check whether the dosage is correct and see if my blood levels of free testosterone are back in the mid-high normal range. The benefits of the testosterone cream (in particular increased energy) should also become visible in the next 2-3 weeks.

Have you ever had your hormone levels tested?

If you’re female, have you ever tried hormonal replacement (in particular testosterone)?

10 great things and a half way update…

I had a wonderfully full weekend and got to catch up with several friends I hadn’t seen in a while.

It was fairly hot here over the weekend which (although impacting on energy levels) made for great weather for a trip to the beach and time spent outside.

Mid-way No Buy Challenge Update – Week 10

On Saturday E and I had a wonderful afternoon tea with Rach and her husband as a mid-way catch up for our 20 week No Buy Challenge (Yes, we’re already 10 weeks in!). We took the time to reflect on how the first half of the challenge had gone, my small discretions and temptations early on and Rach’s temptation that she managed to avoid in week 6.

We also considered the future, discussing whether this is something that would be ongoing for us or if we’d repeat the challenge in the future. For me the challenge has been relatively easy (I really don’t do that much shopping) where as it’s much more of a change for Rach. I’d probably continue (but more as a being mindful and intentional about things I buy then saying NO to all buying) and Rach straight out said no to continuing but would consider doing it again when they’re back from their trip (the reason she’s doing it this time).

10 Great Things about Me

Last week, while reading other blogs (something I try to do daily now) I came across a wonderful post on Chronic Rants that discussed how those of us with chronic illnesses can tend to focus on the negative impacts of our illnesses on our lives which impacts on our self esteem. She recommended that we should make a list of 10 great things about ourselves to counter the lowering of our self esteem…

Here’s mine:

1. I’m optimistic. I always (or almost always) see the positive side of things and don’t let the negatives overwhelm me too much.
2. I always have time for friends and family. Even if it’s just to listen to them and support them that way. This weekend was full of time for my friends. Afternoon tea with Rach on Saturday, lunch with another friend Sunday down the beach, and helping other friends with getting their house ready for rewiring in the evening (I sat and chat with V who’s expecting their second child in just over 4 weeks while E helped her husband with sealing everything they didn’t want dust to get into).
3. I adapt well. Life has thrown me quite a few curve balls (chronic illness being a major one) and I’ve able to adapt my lifestyle so that it hasn’t impacted too badly on my mental health.
4. I’m passionate.
5. I live by my values. Over the years I’ve learnt to identify what’s important to me and (partially thanks to being able to slow my life due to my chronic illnesses) I do my best to prioritise these values, my family and friends, living sustainably and looking after my health being the most prominent of these.
6. I love to learn.
7. I love to help others.
8. My friends and family love and support me in everything I do.
9. I’m (mainly) a positive person.
10. I’m unique!

I challenge you to make your own list of 10 Great Things about You. It does wonders for your self esteem.

Share Your World – Week 5

The questions this week have been very thought provoking and I’ve struggled with a few of them but here we go…

If you had a shelf for your three most special possessions (not including photos, electronic devices and things stored on them, people or animals), what would you put on it?

I don’t really focus much on ‘stuff’ and ‘possessions’ any more so I’ve struggled to think of 3 things that would go on the shelf.

I would definitely include my childhood teddy. He’s been through everything with me and he’s not going anywhere…

The second thing I’d put on it is the old cigar box that currently holds my yearly letters to E. Starting from our wedding day I’ve written a letter to him each year as part of his anniversary gift.

The third thing I’d add would be my special jewellery… My engagement ring (was my great grandmothers) and wedding ring, my heart necklace (6-month dating anniversary gift from E) and my crystal necklace (also a family heirloom).

If you had a box labelled ‘happiness’, what would you put in it?

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhard anyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

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 that I’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.

A simple wardrobe with chronic illness

Another week down in the No Buy Challenge and another week of sticking to the goals. I’ve decided that instead of focusing my posts on the challenge each week (I will if there’s anything to update you on) I’d start doing some of the other posts I’ve been planning with just a short update at the beginning for the challenge.

So, as promised in earlier posts, today I’m focusing on my wardrobe.

Over the last few years I’ve become increasingly interested in reducing ‘clutter’ in our house. With limited energy, my ability to maintain the house to an ‘acceptable’ standard of cleanliness had dropped. All too often there were items lying over every conceivable surface in the house, washing piling up (dirty and clean) and dishes in the sink.

As part of my year of ‘Enough‘ last year, I spent a considerable amount of time removing a lot of the things and stuff that had built up but wasn’t actually needed, useful or loved. I have focused mainly on my own things, hoping to lead by example for E so my wardrobe was one area that got regular attention and I’m quite happy with the result.

There are many, many posts out there about how to create your own minimalist wardrobe, check out:

• Courtney Carver’s (Be More with Less) Project 333
• Francine Joy’s (Miss Minimalist) 7 steps to a minimalist wardrobe
• Brooke McAlery’s (Slow Your Home) Minimalist Wardrobe Questions Answered

This is how I’ve modified the guidelines I read to suit my lifestyle and preferences.

An initial culling

When I first began my wardrobe clean out I pulled everything out of the cupboard and tried it all on with Janelle (my trusted friend) to assess what I liked and actually fit well and looked good. Anything that didn’t meet any of these criteria either got donated or thrown out depending on the state they were in.

Chose a colour scheme

I chose two main neutral colours – black and grey (I do still have a few white and brown items but mostly black and grey) – and two spectrums of accent colours blue/green and pink/purple. Anything that didn’t fit these colour schemes were donated, apart from my orange coat (A honeymoon purchase and my favourite winter coat).

Turned my coat hangers backwards

Last year I turned all my coat hangers around and only flipped them when I wore an item, anything not worn at the end of the year was donated. I found that all my short sleeved shirts are now gone, I tend to wear blouse style tops if I wear my suits, and I only have one long sleeved shirt.

Thanks to this process I now have room to hang everything, including jumpers, t-shirts and bottoms (were folded last year) so I’ve turned them all around again this year so I can assess how many of these items are actually worn throughout the year.

Pay attention to how I feel in each item

Throughout the year I donated several more dresses because they just weren’t comfortable, either they were too tight or they had zippers/buttons on them that were just not comfortable against my overly sensitive skin (a symptom of my Fibromyalgia).

Pay attention to what I wear most

A lot of the guides for minimalist wardrobes recommend X number of tops, X pants, X dresses, etc. This idea didn’t work for me.

I’ve found that because my tummy can (and does) bloat daily – going from almost flat to looking 5 months pregnant by the end of the day – I tend to wear dresses more often than any other item of clothing. I hardly ever wear skirts, jeans or pants any more – anything with a waist band that isn’t stretchy really.

As a result I only have one skirt, one pair of jeans (maternity jeans), two pairs of shorts (one stretch cotton), a pair of maternity leggings (worn almost daily in winter). In comparison, I have 9 dresses.

I also get really cold quickly so I have more items that I can layer such as cardigans, jackets, etc.

From 2 drawers + hanging to one row of hanging (shirts in foreground are E’s)

 

This wardrobe suits my life with chronic pain, limited energy, and daily fluctuations in body shape (bloating).

Maintain

To avoid a recurrence of wardrobe ‘clutter’ I’ve established some guidelines to maintain my wardrobe:

• One in one out (for every new item that comes in an old item needs to leave the wardrobe)
• Stick to colour scheme (any new items need to fit with my colour scheme)
• Natural fibres (no wool) – my preference is for cotton or bamboo, I’m allergic to wool so none of that
• Pockets! (Over half my dresses now have pockets and I’ve made a decision that any new dresses need to have them, this helps dramatically with reducing what comes in because there aren’t that many out there that do)

What items of clothing do you find yourself drawn to most days? Do you think you could live with a minimalist wardrobe?

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).

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

 

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…

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?