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.
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)?
Today I’m seeing my doctor to follow up on the side effects and blood test results. I’m feeling very frustrated with myself lately. Thanks to the side effects I’ve been struggling to do any work, even writing these posts is taking me many times longer than normal.
Share Your World: Week 3
What is your favorite piece of art? (it doesn’t have to be famous)
I don’t really have an answer for this one as I tend to favour art work that has special meaning to me or that evoke emotion in me and there are several that fit that category. Looking around our house at the moment there are two that stand out to me…
The first professional photo of me and E. This photo was taken almost 10 years ago. Every time I look at it, it makes me smile and feel good inside.
This painting was a birthday present to me and E on our 30th birthday last year. It was painted by one of our friends and I love how simple it is. It hangs in our toilet and adds a point of interest to an otherwise boring room.
What made you smile today?
Watching the cats chase each other around the house. Cats can be very entertaining and also great therapy. When I’m feeling my worse and spend my time curled on the couch I love having them come and curl up with me.
Which place do you recommend as a Must-See? Please state which country, state or providence.
My Aunty lives on this wonderful island in the middle of the Hawkesbury River. It’s home to a few hundred locals while others have holiday homes on the island. Apart from the communal vehicles for maintenance and emergency services there are no cars on the island and you can only access it by ferry.
I love how peaceful it is on the island and the fact that there is such a communal feel.
Complete this sentence: When I was younger I used to….
hide in cupboards with my sister.
Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?
I was grateful for the opportunity to float in the ocean and spend time with family and friends. I’m hoping to make more beach trips this summer, especially given the fact that I’m meant to be doing more water based exercises at the moment.
I’m also grateful for having rediscovered my meditation mantra from last year, it’s been very helpful to me while I’m dealing with the extra symptoms and side effects.
May I/you be peaceful and true
May I/you have an open heart and open mind
May I/you be free from all suffering
This week I’m looking forward to getting some answers from my GP and taking the time to focus on recovering from the last weekend.
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?
Over the last week or so I’ve been really struggling with the brain fog and fatigue. My doctor and I are trialing an increase in my Lyrica doses and so far I’ve seen little to no improvement in the pain levels (the reason for the Lyrica) and a massive increase in the brain fog/fatigue department.
Retrieved from Facebook
I feel almost like I’ve taken a 6 month leap backwards in my mental capabilities!
It’s really hard to explain what it’s like to be on this sort of drug. My mother-in-law told me about someone in her support group who recently started Lyrica and I really liked her description… you can start off feeling fine, almost good, so you go about your day as normal but at some point you realise that you feel as if you’re high on drugs, you are completely out of it and unable to do anything properly… thanks to the fog I don’t think I’ve written that quite right but you get the gist of what was being explained.
Each and every day, multiple times a day, I’m stopping and asking myself what I’m doing. I feel like most days lately are just going by without me achieving much, like it was when I first fell ill.
Admittedly I am achieving more than I was back then, physically at least. I’m managing to keep up my (mostly) daily yoga, 3 times a week body weight exercises and daily walk or ride (which I’ve managed to increase to around 20 minutes a day).
Mentally though, I’m getting nowhere!
I have a uni assignment due next week and the fog is making it difficult to even understand what I’m reading in the weekly work, let alone managing to create my own 6 lesson unit of work on history for primary students. Luckily, my sister is over from Hong Kong at the moment and she’s studying similar subjects so I’ve had her helping me at least lay out the lessons so that it should be easy for me over the next week or so to get it into a structure suitable for uni. To be honest I’ve realised I’m not quite ready for study with deadlines yet, so when I finish this unit (hopefully passing) I’m just going to focus on the Certificate IV in Training and Assessment and not continue my degree for a little while.
Not being able to complete my uni work makes me question how ready I am to return to work. Although I’m fighting for a part time return to work soon, maybe I’m not ready. If this fog is not just the drug again, maybe I need to take longer to heal.
Every day I will be asking myself this:
From the last campaign I ran before getting ill in 2013.
My response is not always yes. Although I’d like it to be yes everyday, there a days where I’m struggling to even remember the order of my morning routine. On those days I feel like I’m travelling nowhere or maybe even backwards.
I know I can travel well, even with my illness, I just need to remind myself of my priorities and focus on those. I can be happy and fulfilled even with a life of pain and fog where most of my time is spent at home.
Next week when I see my doctor again I will need to have made a decision, is the fog/fatigue worth the minimal pain reduction the Lyrica is providing?
Right now my answer is NO.
If things have not improved by next week I will be asking to be taken off the Lyrica and, given that then I will be off all pharmaceutical drugs (except the Depo Provera for the Pelvic Congestion Syndrome), I will be looking more into natural and non-drug options for pain and energy management.
For me to feel comfortable returning to work, I need to be at a level where I can function – both physically and mentally – at a minimum of half of what my ability was before falling ill. At the 50% point I’d be comfortable with part time work which would hopefully assist in increasing that percentage for the mental functionality.
I’m beginning to feel like I’m rambling so I’m going to end this post here.
My questions to you today are:
Are you travelling well? Have you found that good point/balance point in your life?
If you ever tried Lyrica, what were your experiences with it?
Do you have any alternative treatment recommendations for pain and energy management?
Thank you for reading this post and don’t forget, you can head over to LiveKen to follow our journey to a simple, sustainable and meaningful life. I would love to share this journey with you as I’m sharing the journey with Chronic Illness here.
Today’s Physical Friday post is going to be different to what I’ve done so far. I’ve just finished reading The Complete Fibromyalgia Health, Diet Guide & Cookbook by Dr Louise McCrindle and Dr Alison Bested so I thought I’d provide a review for those of you who might be interested in this book.
Image taken from Goodreads (click to view original)
The Complete Fibromyalgia Health, Diet Guide & Cookbook aims to provide the reader with an overview of what Fibromyalgia is, how it affects those suffering it and how a change in diet can help minimise the symptoms through a focus on increasing the micronutrients for managing Fibromyalgia and reducing inflamatory foods.
Overall, the book is easy to read and divided into self-explanatory parts so that you can easily absorb the information in smaller portions. The authors advocate an approach to managing Fibromyalgia that takes into account both Western and Eastern medicines and philosophies. There is a strong focus on managing Fibromyalgia through diet, with half the book focused on this aspect, however they acknowledge the need to use other techniques as well.
The overall approach recommended by the authors is the ‘SEEDS of Health Program’, that looks at Sleep, Energy, Exercise, Environment, Diet, and Support as the key factors that influence Fibromyalgia symptoms. A lot of the information covered by the book I found to be a repeat of what I had already learnt through my online research and discussions with my doctors, however I did find it useful to confirm my approach.
I would not recommend attempting to read this book in large blocks, especially if you are suffering from Fibromyalgia. Although, as I’ve already stated, the information is laid out in an easy to follow and understand way, I did find that I became overwhelmed a few times and had to put the book down for a few days before reattempting to read a few of the chapters. Especially when it came to the diet section and the tables of foods to avoid (the inflamatory foods) and the anti-inflamatory foods which should be increased in your diet.
I like the way the book provides a four week menu plan with associated shopping lists and recipes, but again I found the long lists to be a little overwhelming all at one time. The authors do acknowledge this and recommend starting with modifying one meal for a week (for example breakfast) while continuing your normal diet and then slowly increasing until all your meals follow the diet.
Although I personally wouldn’t follow the menu plan precisely, I will most likely incorporate some of the recipes and the ideas behind this diet into my own.
This book is great for someone who is newly diagnosed and wants to have a better understanding of what is going on and what they can try in terms of management. Just remember to break your reading sessions into short blocks as, although easy to digest, the amount of information can be overwhelming for someone suffering from brain fog and fatigue.
Have you read this book?
Did you like this review? What details would you like in future book reviews?
For the past month, on top of working on the Foggy Frog and the Pain Gang Kickstarter campaign, I’ve been working with an Exercise Physiologist.
The goal of working with the exercise physiologist is to work out what exercise program I can maintain that will over time improve my physical health.
There are 3 key areas to focus on when working on physical health:
Stength
Cardio
Flexibility
Today I’m going to provide a brief overview of these three areas and provide my current exercise plan as an example of what can be done.
It is important to remember that everyone is at different levels of health and what works for me may not be right for you, so before you decide to try something new please check with your doctor or health care professional! Especially given that most of us are suffering from various illnesses that do affect our ability to do what ‘normal’ healthy people can do.
Strength
Strength (or resistance) training is an important part of maintaining overall health. This form of training focuses on maintaining and/or building muscle which is important as it helps protect your joints from injury, improves your mobility, and can be beneficial in managing pain and improving your overall sense of wellbeing.
When beginning a strength training program it is important to understand where you are starting from and not to push too hard to begin with.
For example, people who are currently bed bound may begin with gentle range of motion movements and may actually need someone else to help move their body. While someone who is healthy and fit may be lifting extremely heavy weights to build and maintain their big muscles in their legs, back and arms.
Remember to start from your current position.
For me, this meant starting with some basic body weight exercises. I am not bed ridden but it has been at least a year since I’ve done any heavy lifting or weights programs.
What do I mean by basic body weight exercises?
When I first went to see the exercise physiologist at the beginning of March I was prescribed 4 exercises to do. These exercises focused on the main muscle groups (the quads, glutes, and shoulder and arm muscles).
My Strength Program
Sit to Stands (quad workout)
Sit on the edge of a chair, feet flat on the floor.
Stand upright, extending knees fully and engaging glutes.
Should feel this exercise working your leg muscles.
Start with a surface that is high, as this will be easier.
Wall Pushups
With arms slightly wider than shoulder width apart, and feet at a comfortable distance from a wall, gently lean body towards the wall.
Relax shoulders, and avoid chin moving towards the wall.
Push back out to original position, making sure not to lock elbows.
Bridge
Lying on your back with your knees bent, bring your belly button towards your spine to keep your core activated.
Slowly raise your bottom from the floor.
Should feel this working your glutes.
Remember to relax your upper body (neck and shoulders0
Arm Slide
**I was originally asked to do these standing against a wall, but my neck and shoulder muscles are so tight that I struggled to do the exercises. It has been modified so I now do them lying on the ground with knees bent.
Stand against a wall (with spine neutral)**, raising your arms to a comfortable height with your elbows bent to 90º.
Gently squeeze should blades together and down (arms will move down the wall). Only go to a pain free range of motion.
For the first week I was only to do one set of 5 repetitions for each exercises twice that week. If I didn’t have more pain/less energy/crashes from doing that I was to up it to 2 sets of the 5 repetitions for each exercise twice a week.
After doing this for 3 weeks, I have now been told I can add an extra day. So I will be doing 2 sets of 5 repetitions three times a week (Monday, Wednesday and Friday). With the modified arm slide, I hold the initial “arms up with elbows bent” position for 10 seconds before doing my 5 repetitions. This is to help stretch the necessary muscles to make it possible for me to do the exercise against a wall in the future.
Cardio
Cardio exercise is important to protect against cardiovascular disease. The exercises we do make sure our heart muscle is working hard and our blood is pumping around our body.
As with the strength exercises it’s important to know where you are at and start at a point that is not going to cause crashes.
For one person this may be getting out of bed and walking to the bathroom, for another it might be running 12kms.
There are many different forms of cardio exercise but for those of us with chronic illnesses the best ones to try are walking, riding a bike, or swimming.
These activities are low intensity and are less likely to damage our joints. This is important because we are likely to have less muscle protecting them.
My Cardio Program
Before seeing the exercise physiologist I had been trying to increase my cardio with a form of graded exercise therapy where I was increasing my exercise each week by 10%. I was walking or riding my bike daily (mainly walking), and occasionally going swimming. I had built my walks up to 30 minutes BUT was needing to rest for about 2 hours after each walk.
The exercise physiologist suggested cutting my walks back to 20 minutes maximum which seems to have helped with the length of rest I need after each session.
At the moment I’m not riding my bike and only very very occasionally going swimming because I want to focus on my walking and trying to increase back to 30 minutes slowly over time, with the exercise physiologists supervision. I aim for a 20 minute walk daily unless I have a day of appointments (where I walk a lot between them) or I’m participating in an outing or activity that will involve a reasonable amount of walking, riding or swimming.
Flexibility
Maintaining flexibility is extremely important for those of us who suffer from chronic pain conditions. Keeping the muscles moving and stretching them can be extremely beneficial for pain management.
The most basic form of flexibility exercises are stretches. Again, if bed ridden you may have someone else move your body and stretch it for you.
A more advanced form of increasing flexibility is to participate in yoga, pilates or tai chi. These exercises work on stretching and strengthening your muscles in a gentle way and also provide mental health benefits from the meditation like format of sessions.
My Flexibility Program
Very early on in this illness (after the first few months of complete crash) I began to introduce exercise into my life in the form of yoga. I started with just gentle stretches and moved slowly into more yoga poses.
At this stage I’m up to about 12 minutes of yoga a day. I do this either as a single session in the morning or as a series of stretching sessions throughout the day.
On the days I do my strength exercises I do them as a circuit with my yoga poses in between to stretch the muscles that I’m using. I’ve found that this helps reduce the number and length of rests I need during the exercise program.
So that provides a basic overview of the 3 areas of physical health and provides a few examples of how someone with a chronic illness (i.e. me) has found a program that works for them.
Do you exercise regularly?
What helps you most in maintaining your health through physical movement?
Here it is, my first ‘Ask Megan’ post. I have to admit that the question I’m answering didn’t come through the Say Hello page, but from a real life friend. We were talking about everything I’d been through since becoming ill and like everyone else she kept getting lost about who is doing what in terms of the doctors. Her suggestion was to create a flow chart that showed how all the doctors interacted with each other and with me.
I’ve tried to keep this simple, so I’ve just left it as showing who I’ve seen and who they’ve referred me on to. The doctors I’m still seeing are shown in Green, while those I no longer see are shown in Blue/Grey.
So, without further ado. Here is my flow chart of doctors…
I hope this helps clear up any confusions about who’s who and how many different doctors I have seen.
Do you find the multitude of doctors you need to visit becomes confusing?
Do you have a question for ‘Ask Megan’? Please let me know either in the comments or through the ‘Say Hello’ tab.
“Not until we are lost do we begin to understand ourselves.”– Henry David Thoreau
As I mentioned in my previous post on Aspriations for 2014. The new year is going to be all about defining the best ME. To do this I will be focussing in on 3 core topics for the year and aiming to answer certain questions and experimenting with different activities, treatments and adventures to define what “the best ME” is and to live my life accordingly.
The first core topic that I will be focussing on is the Physical.
Since becoming ill, I feel that I have lost what I thought defined the best me in terms of my physical health, fitness and abilities. I feel that I have been taken back to the beginning and have to work on building myself up slowly.
In the new year I will be aiming to answer the following questions about my physical self:
What activities can I do within my new limits?
Can I add new activities into my life without increasing symptoms and crashes?
Which physical activities increase my sense of wellbeing and fullfilment?
I will be trying not to focus solely on my bad health next year, however I feel to begin focussing on the positive aspects of my health as it is at the moment I do still need to answer some questions about my illness and how it affects me physically.
On top of answering these questions I will be trying new treatments if possible and exploring opportunities to increase my physical activity within my limits. I will continue to experiment with pacing and setting boundaries and will provide updates on each of these experiments.
My goal for 2014 is to find the perfect balance between physical activity and rest that allows me to live with optimum health.
Posts related to defining the best Physical ME will be posted under a new regular column called Physical Fridays.
(c) Megan S, December 2013
So, please join me in the new year to discover more about defining the best Physical ME.
Do you have any physical health and fitness goals for the new year?
Are there any features of defining a best ‘ME’ physically that you feel I have missed and should add to my thoughts?
Liveken - my chronic life journey 