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…
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
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.
Over the last few months I’ve focused on building up my exercise levels to a point that I can maintain a consistent exercise regime including stretches, a relatively consistent step count, and regular bike rides on my electric bike. Moving my body with the aim of reducing pain levels and increasing energy.
I’ve also helped several friends and family members to move house. It’s been interesting to see the different ways people pack, how they prioritise what to keep, add or give away, and who they have to help them move. I am glad that although I physically couldn’t help much with any of the moves, I was there to support my friends and family.
My brain has been less foggy lately as well. Yes, I still have days that I’m crashed and everything is a struggle but in general I’ve had a clearer head. This has let me move forward on my projects, progress my study, and consider taking on new opportunities that fit my values and allow me to grow.
Everyone in life is moving in one way or another. In most cases though we’re all moving in many different ways all at once.
Physically, mentally and emotionally we’re always moving.
The year is going by so fast and we’re now a quarter of the way through it! I’m still working on slowing down and finding a pace that allows me to feel balanced and unstressed. By doing this I’m hoping to find a way to continue my slow upwards progression with my health and avoid any major crashes.
I’m a Leftie… and yes, I’ve heard most the jokes there are in relation to this.
If you had only one TV, would you prefer the TV in the living room or another room?
Because we have a projector rather than a TV, I’d prefer to have a separate ‘movie room’ with no windows to keep it dark inside. It would also help us to not necessarily eat meals in front of the TV as we do now, giving us more time to connect.
At the moment we have the projector in the living room and a small TV in the bedroom.
Have you ever participated in a distance walking, swimming, running, or biking event? Tell your story.
I’ve participated in a few events before getting sick including runs up to 12 km (there’s a local city to bay run that occurs annually), Relay for Life (a 24 hour walkathon for cancer), a 24 hour swimathon for the MS Society where we took turns doing laps as part of a team, and several rogaines (the longest being 12 hours).
None of these events have a particular story to share. I enjoy being active when my health allows it and prefer slow long stints than sprints.
Complete this sentence: Love is… truely being there for one another. Being patient, kind and caring, honest, supportive and tolerant of each others’ differences.
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 time I got to spend with my sister, T, and with E over the Easter long weekend. I’m grateful for my slowly improving health, which is now at a point I can participate in more social activities and start adding walks and rides back into my routine.
In the next week, I’m looking forward to completing a draft for the biodiversity trail project I’ve been working. It always feels great when I can cross something large off my to-do list.
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.
I’ve mentioned many times about trying to maintain some form of routine and pacing as a way of managing my health. Now it’s something I need to refocus on.
I’ve got goals and dreams that I want to achieve within the next few years, and in order to do them I need to be as healthy as I can be. As I’ve previously mentioned, over the last few months I’ve begun adding work back into my life and this has thrown the routine I had set for myself out the window.
Why is it so important for you to have some form of routine?
In order to maintain a lower level of pain and more energy I’ve found the only thing that even works a little is pacing myself. Without routine it’s hard for me to keep my step count consistent and to actually motivate myself on my crash days.
I want to increase my step count back up to where I was before I crashed around Christmas last year (an average step count of 7,000). To do this I’m slowly raising what my minimum step count is for crash days. Over the last 3-4 months I’ve raised my minimum step count from less than 2,000 to 3,500. I’m raising in 500 step intervals every few weeks.
But what about the things that happen in life? You can’t plan everything!
No, you can’t but you can set yourself up so that you have some reserve for the unexpected while still maintaining a general routine on a day to day/week on week basis.
What’s your plan?
At this stage I’m still formulating a new plan for pacing and setting a routine that is flexible enough but I think it will look something like this…
8 – 8:30 am
Do some deep breathing, get up and do a short yoga sun salutation
8:30 – 9:30 am
Shower or bath (pain relief technique) and get dressed, rest if necessary
9:30 – 10 am
Breakfast
10 am – 12 pm
High energy work/housework/appointments with regular rest breaks
(no longer than 1 hour activity at a time without a break)
12 – 1 pm
Lunch
1 – 3 pm
Lower energy work/housework/appointments with regular rest breaks
(no longer than 1 hour activity at a time without a break)
3 – 5 pm
REST (tv or nap depending on energy levels)
5 – 7 pm
Make and eat dinner
7 – 9 pm
TV
9 – 9:30 pm
Pelvic Stretches, prepare for bed
10 pm
Bed
It’ll take me a while to build up to this (especially the getting up and going to bed at a regular time) but it’s important to me to push myself without going past my limitations.
Have you ever tried to set yourself a routine? How successful was it?
Last week I discussed how pacing was one of the key recommendations from the International ME/CFS Primer for Clinical Practitioners. As has happened in the past I left my doctors appointment frustrated at the lack of understanding that medical practitioners here in Australia have about ME/CFS and treatment techniques.
When I brought up the topic of Pacing, it was clear that my definition and my GP’s definition were not the same, and I struggled with trying to explain what I meant by pacing.
To my GP (who has a background in Exercise Physiology/treatment), pacing means the same thing as Graded Exercise Therapy (GET). This means that he believes it isn’t about me pacing myself so much as me following what others (my exercise physiologist) tells me know matter how I’m feeling at the time. This technique works for those suffering from depression or other physical injuries, possibly even for Fibromyalgia, but it does not work that way in ME/CFS. Due to physiological differences, people who suffer from ME/CFS react differently to exercise and pushing when feeling bad can lead to crashes and irrevocable damage to their systems (not in all situations but it is possible).
The other thing that came up in my doctors appointment that makes me feel a little frustrated was that his idea of how I can tell when I most likely will be better was based on the time frames of the pacing/GET. Based on how often we’ve currently been increasing my exercise levels, it’s still going to be a few years before I’m anywhere near better (10% increases have been occurring every 2-3 months). This doesn’t help me with feeling like my life is actually moving forward. I feel like all my goals (in particular starting to try for a family) are just on hold and won’t be achievable at the current rate of recovery given that E believes (and to some extent I agree) that I need to be healthy again before we start trying and we’re not getting any younger.
Luckily my Exercise Physiologist at the University Clinic seems to be slightly more up to date with what treatments affect our system and has told me to do what I can when I can. If I can only do a little bit just do that and don’t push myself too far.
So, after pushing myself too far over the last few weeks, I’m back at the point of identifying my current base line so that I can re-initiate some form of pacing and routine in my daily life.
By having a better understanding of where I’m at I’ll feel more confident about saying ‘NO’ to things that are going to push me too far past my current limits and will feel slightly more in control of my life (to what extent I can be) – At the moment I feel like I’ve completely lost control and don’t really know where I’m heading.
As of last Friday, I’m once again paying close attention to what I’m doing, how my body is feeling and what I still have to do. I’ve given myself permission to take things extra slowly while I reestablish my base line and I will then (very slowly) build up from there. I am also trying to reestablish my morning, lunch and evening routines to help me stay on track.
What are my routines?
Morning Routine
Up by 8 am (lately it’s been 8:30 – 9:30 before I’m out of bed)
Journal
Shower and dress
Breakfast
Sort animals (including sweeping floor)
rest
Yoga (and on Tuesday, Thursday and Saturday my Exercise Physiologist workout)
meditation
blog/read/write/draw (MENTAL ACTIVITY)
Lunch Routine
lunch at 12-12:30pm
walk or bike ride (I’ve been taking photos of the nature around us (see gallery below for some) – it’s been such nice weather lately)
rest/meditation
Evening Routine
All electronic devices off by 8:30pm (including TV, phone, computer)
Bath/Shower
Read
Meditation
Although I feel extremely guilty about having 2 baths/showers a day I’ve found it’s an essential part of my pain management strategy. When I skip one of them my pain levels increase by quite a bit. To alleviate my guilt a little I am trying to bucket out bath water whenever I have the energy to do it so that the water is reused to water the garden.
In between these routines I fit in any other activities that need doing such as appointments and my housework. Most days the morning routine takes me all the way to lunch time by the time I add rests in between short sessions of the last activity.
On Wednesdays I tend to have doctors appointments in the morning (and sometimes the afternoon as well) which replaces my mental activity and usually means the rest of the day is just resting.
How do I plan on Pacing?
Pacing appears to be key, both to managing my pain levels (from the Fibromyalgia and Pelvic Congestion Syndrome) and my energy levels so as to avoid or minimise crash days.
Over the last few months my number of crash days (where I can’t do much at all – I may push myself to do my exercises or some housework/an appointment – and spend most the day on the couch resting) have increased dramatically again. I thought it was as a result of increasing my Lyrica dose, but as I’m coming off that (I have a week to go) I’ve realised that even though that has played a small part I’ve also just been doing way to much and missing my rest breaks because of how foggy I’ve been lately. The Lyrica also seemed to have been blocking my tell tale signs that I’ve done too much, such as my sore throat and the slight increase in pain levels.
I am going to be pacing in two different ways:
Over a week or longer period I will be making sure my appointments and social events are spaced out enough that I have time to rest in between them. This will mean learning to say no to some events and learning to prioritise what is most important.
Throughout each day I will be listening to my body and adjusting what I do according to my symptoms. I will try to alternate physical and mental activities, as well as making sure I have rest breaks whenever my throat begins to get sore or my pain levels begin to rise (I’d like to do it before symptoms occur but I don’t want to go to the extreme of saying I’m going to do everything in 15-30 minute blocks – this would be the next step if I’m not able to pace myself based on listening to my body).
How do you pace yourself and do you have routines to make sure you manage to do the most important things?
Once again I have fallen behind on my schedule for posting here. As my health has improved (ever so slightly) I’m again trying to find balance between actually doing things physically and mentally, and resting.
Over the last few weeks I have had quite a lot of very busy days (for me at least) mixed with a few days of having no energy to do anything at all. The number of crash days – days where I have no energy at all – do seem to be getting less each month according to my records, but I still haven’t hit the right balance and I’m still struggling to do a full day of anything really.
I have decided that in order to do more physical activity I’m going to have to cut back on my online activities for the next few months at least, as such I will be aiming for only one post here and one post over at LiveKen each week (only every second or so post on LiveKen will be written by me, though I am acting as editor for all other posts).
What physical activity am I wanting to increase?
Spending more time with family and friends – I’d like to spend at least one day a week actually out doing something with the people I care about. In the past few weeks I have managed dinner at a friends house, a trip to our local open range zoo with my sister and younger cousin, and tomorrow my sister is taking me and my mum out for a winery tour.
Housework – I’m slowly working up to be able to keep on top of this myself. Through de-cluttering and setting up routines I’m hoping to be able to maintain the house at a level that we only need the cleaners in once a month to keep on top of it.
Exercise – I’m still trying to build up my exercise levels. The housework has helped a lot with that, but I’d also like to be able to walk or ride my bike a lot more than I’m currently able to.
Other offline activities I would like to increase:
Drawing – I feel like although I always want to get more of the drawing done for the Foggy Frog picture book, I’m not always managing to fit in any during the week. My aim is to do two of the hand-drawn pictures a week until they are done and then work out the next steps for colouring them.
Study – I have an assignment due in 4 weeks for my uni course, and have not made much progress on the Training and Assessment Certificate so I’m going to be prioritising these for the next month or two when my brain is functioning. I can still only manage maybe 1-2 hours a day actually focusing and being productive in any mentally challenging activities.
Business Planning – I have begun working with a business advisor to work out the best way to promote the picture book and build on it with the LiveKen brand. I would like to allocate some more time to this.
Overall, I am trying to find a better balance between my online and offline life so that I’ll be better able to work towards returning to work as soon as possible. As I do this I do have to keep in mind that this illness has a mind of its own. I’m trying my hardest not to get my hopes and expectations up too high, but at the same time trying to challenge myself and not resign myself to where I’m at now.
This balancing act is a difficult one for anyone to achieve well, even without a chronic illness, so I will try to remember that rest is still my first and foremost priority and that I need to be gentle on myself. No matter how frustrating it may be my health must come first.
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?
It’s the main thing that I need to be able to do properly to have a reasonable lifestyle with these illnesses.
Its also the main thing I still haven’t quite got right…
I think I’ve told you before that my doctor has asked me to increase my exercise at 10% each week (Graduated Exercise Therapy) and this has been going well.
I’m up to being able to walk about 30 minutes or ride about 10 minutes a day. Obviously I’m listening to my body and don’t exercise on days when I’m really bad because I don’t want to crash.
The problem is that, although my exercise is going well, the overall pacing isn’t working too well. I either do too much during the week and crash all weekend or the opposite, too much on the weekend then crashing during the week.
Over the next month this struggle with pacing is going to be even worse! The Foggy Frog Kickstarter campaign starts this Sunday (only 2 days away) and then we have just 27 days to raise the $7,500AUS (approx $6,000US) to finish the drawings and publish and distribute the picture book to those that need it. On top of that I’m hoping to attempt a very part time return to work as soon as I can get my doctor to agree (going to talk with him next Wednesday) and I’ve now got appointments with a Physio, an Exercise Physiologist, and a Naturopath next week!
I think in the long term my best bet is to use the same technique for all activities as I’m doing for the exercise (raising by 10% each week) but in the short term I’m just going to focus on taking very regular rest breaks, ensure I do a good combination of rest and activity, and finding a balance between all the different aspects of my life.
One Final Note:
As I mentioned, the Kickstarter campaign begins in 2 days. We’re hoping to launch with a bang and spread the message that we want our stories heard. We’re doing this through our Thunderclap and we’ve almost reached the minimum number of people needed for it to go out (we only need one more person to join us)!
So please, if you’re on Facebook or Twitter, join our Thunderclap. Click here and choose “Support with Facebook” or “Support with Twitter” and you’ll be joining us in reaching out to over 85,000 people on Sunday afternoon (Saturday night in the US) and letting them know that we deserve to have our stories heard too!
Do you think the 10% increase rule is a good way to go?
Last week I shared a video of my daily yoga practice to show what exercise I do to reduce my pain levels. Today I want to share the other part of my daily routine, the “real exercise” as my GP likes to call it.
To maintain muscle condition, or at least reduce the levels of deconditioning that can and will occur from lower activity levels, I aim to do at least 3 sessions of cardio based exercise that uses my biggest muscles (my legs). At the moment this exercise is either walking or riding my bike (inside or outside depending on the weather).
My bike set up for me to ride inside.
Obviously I don’t want to push myself too hard, so these 3 sessions of exercise don’t last very long. I have built up from as low as 1 minute of riding, or 2 minutes walking, to 3 minutes riding or 6 minutes walking per session. Between sessions I take at least an hours rest.
Because of the extreme heat here at the moment this has only been inside riding (so I can stay in the air-conditioned house). Usually I aim for 2 sessions in the morning and one session in the afternoon, but today I had my mum visit this morning so I only did one morning ride and now have to aim for 2 rides this afternoon. This will be a struggle for my because afternoons are my worst time of day for any activity, but I’m going to do my best as I promised my GP on Wednesday that I would do 3 sessions a day.
As I’ve mentioned on Twitter and Facebook, I have now got a confirmed diagnosis of ME/CFS and Fibromyalgia. I will do a separate post soon to update you on what this means for me in the near future, but returning to work does not look to be happening anytime soon. My GP has said I need to build up to being able to be on my feet and active for at least 4 hours at a time (with no rest breaks) before we consider returning to work, at the moment I’m at about 1 to 2 hours between my rest breaks, so it’s still a bigger job than I’m capable at the moment.
What physical activity do you do daily?
Are you working to slowly build up your capabilities?
Liveken - my chronic life journey 