I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!
With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.
This means it’s time to reevaluate again and find what I can step back from to achieve balance again.
Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.
I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.
I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.
As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.
I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.
Right now I’m saying NO to:
taking on any more for the AAEE Conference planning
to other volunteer opportunities that don’t have any connection to possible paid work in the future
meetings I can postpone until later
I’m saying YES to:
time with family and friends
actions that will progress the book launch
actions that will help me be healthier and stronger (exercise, diet, rest)
What do you say No to in order to say YES to the things that matter?
“(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?
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.
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?
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?
This morning I was reading a post from my friend Julie Ryan over at Counting My Spoons where she shared a bit about the rough times she’s going through at the moment and how she’s trying to cope with them.
A lot of what she’s talked about in that post, slowing down and focusing on perspective and a positive attitude, are things that I’ve found have worked for me when learning to live a more sustainable and meaningful life with all the symptoms of a chronic and invisible illness.
I’ve found that, as I’ve learnt to cope better with the constant fatigue and pain that accompany me on a daily basis (hello Foggy Frog and all your friends), my illness seems to become even more invisible.
When the pain first struck it was obvious to everyone around me that something was wrong. I wasn’t able to function at all, I was scared because I didn’t know what was going on, and my body language made it clear I was in pain.
These days it takes a lot of pain and very high fatigue levels for me to look sick. Having accepted what I have to live with on a daily basis, I’ve learnt to ‘ignore’ the pain and the fatigue by focusing on what I can do and simply not thinking about it too much.
These days when I’m out I’m often greeted with ‘you look well!’, ‘it’s good to see you looking so healthy’, or other statements to that effect from people who know me. Inside I might still be feeling like I’m dying but on the outside I look perfectly fine.
This facade does crack occasionally when I overdo it, and those who have seen the sudden change often remark that I looked well one second and the next I looked like I had no energy at all.
What does all this have to do with working?
In most work places you have at least some face to face interaction with other people. People also expect you to look healthy while you’re at work. If you go to work looking like death warmed up you’re likely to be sent home!
I’ve found that being able to slow down and focus on the positive aspects of my life I’m better able to cope with change and with the pressures working puts on me.
Many with chronic illnesses have to work. These people have no choice but to do something in order to have enough money to provide themselves, and sometimes their family, with basic requirements such as food, shelter and clothing.
Others are supported by their family or were lucky enough to have already saved enough money to retire and focus on their health. However, these people still need to feel like their contributing and are ‘worthwhile’.
Personally, I’m lucky enough to be supported by my husband. I work because I want to be doing the work not because I need to in order to survive. I ‘need to’ work in order to maintain my own sense of self-worth and to feel like I’m making a contribution to society.
Because of my own personal situation, I can choose the type of work I take on. At this point in time, half the work I’m doing is voluntary (unpaid work).
The benefit of starting with voluntary or very casual work is the flexibility. Although I still feel guilty occasionally for not doing what I wanted to get done I can just step back and say sorry I need a break if things get too difficult for me. Thankfully I’ve only had to do that a few times so far and I believe that’s because I am taking steps to allow my health to come first.
Building up gradually. I didn’t jump in head first into working after I reached the point I felt I was capable of it. Instead I started with as little as half an hour to an hour a week and slowly built up from there.
I have had set backs along the way but overall I’ve been slowly improving my health and increasing my activity levels. Set backs are, I believe, inevitable when you live with a chronic illness.
Understanding the fluctuations in my health. As I said, I believe set backs are inevitable with chronic illness. My health often fluctuates. Sometimes I can predict it and sometimes I can’t, the important thing is to listen to my body and stop when I need to. The changes in weather through the seasons causes my pain and fatigue levels to fluctuate. Knowing this, I can make sure I don’t schedule too much in the first few weeks of winter and summer (the 2 seasons I’m affected the most). For me, understanding this has been an important part of pacingmy activities.
Scheduling rest. Especially early on in my illness, my main tool for pacing was to have set rest periods and starting with very small amounts of activity broken up with larger periods resting. Today I don’t ‘rest’ in the same way I did when I was first ill. Back then I actually slept during the day a lot. These days, unless I’m having a crash and literally can’t keep my eyes open, I try not to sleep during the day at all. My rests are now periods of meditation, listening to audio books or lying in front of the tv (tv used to count as activity when I was really struggling).
Setting goals and keeping a To-Do list. Living with Foggy Frog as a constant companion, I often struggle to remember things. This can be very frustrating so I now keep an ongoing To-Do list that I can check regularly and mark off what I achieve. I also break down any big goals (such as my work projects) into smaller steps so that I only need to focus on one thing at a time.
I aim to be realistic about the timeframes I give myself for projects and To-Do list items. For example, most days I’ll only set myself 2-3 small items to achieve. If I do more I add that as I go but as long as I can mark something off my list each day, I’m generally happy.
This week my focus is on the Foggy Frog book. Yesterday I sent out the survey to allow backers to vote on the cover design and today I’m writing my blog posts. Over the last few days I’ve sent some emails to prominent people asking if they’d like to preview the book and provide comments. The rest of the week will likely be spent following up on publishing quotes and the emails, and beginning to plan the book launch.
How do you slow down and focus on perspective to minimise crashes and maximise your success at work?
Back in December of last year, I answered a reader’s question about pacing and working. In this post I talked about some of the issues we face when we’re attempting to work with a chronic illness. We talked about our inability to be consistent and some simple tips and tricks for trying to avoid crashes as a result of working.
It’s been about 6 months since I wrote this post and in that time I’ve been gradually increasing the amount of work I’m doing myself. I’ve been very fortunate that, although I was unable to keep the job I was in prior to my first major crash, I’ve been able to use the connections I’d made when I was working full time to get establish a very flexible working environment for myself since then.
Back in 2013, I was working full time, studying full time and exercising every day (daily walks and gym at least 3 times a week). That all stopped suddenly when I woke up with pelvic pain so bad that I ended up in the emergency department all day while they tried (and failed) to work out what was causing it. I took a few days off on sick leave and then attempted to return to work even though the pain hadn’t gone and the fatigue was getting worse by the day. Obviously, that wasn’t working so I was yet again on leave.
At the time I thought it’d just be a few weeks and I’d feel better and be back at work. I had test after test to try and work out what was wrong with no clear results. As the weeks dragged into months I began to despair that I would never be able to get back to work.
Overall, I had almost 2 years without working at all before I got to a point where I felt confident with my ability to maintain some semblance of consistency and began to look at returning to some form of part time work.
Initially, I attempted to return to my previous role in a part time capacity, however my employers weren’t keen to take on the liability of having me there if I was to get worse again once starting back at work so I began to look into other options.
I have always wanted to work for myself and both E and I saw this as an opportunity to see how I would go with self employment, however I still wanted to have some form of ‘regular’ income coming in.
While looking at self employment opportunities, I approached an old boss to see if he had any casual work available for me to do as a means of seeing how I go with adding work back in. He did and he’s been great ever since then. Originally I thought I’d be able to build up to 8 hours a week of work for him within a few months but I quickly learnt that this wasn’t realistic. To this day, I sometimes manage that level of work for him but most weeks I only manage an hour or two a week (and some weeks none at all).
Having a boss who has been aware of my limitations from the start and willing to be flexible about how much work I take on has been great. I take on the jobs that don’t necessarily have a fixed deadline as they’ve been waiting for so long for clients to provide their data and so it’s not a big concern if I’m unable to complete them as quickly as I’d like. I’m also able to work from home which is a huge benefit as the few times I’ve attempted to head into the office to work, I’ve ended up paying for it after.
Although I like the fact that this work is paid by the hour, I’m able to work from home, and my boss is extremely flexible, it’s not the type of work I’m really interested in doing long term. This is where self-employment has come into play.
I’ve got two distinct areas that I’m working in from a self-employment perspective, both of which I’ve joined together under the LiveKen banner.
The first, and at the moment the largest (bringing in the most income), side of the business is environment and sustainability consulting work. I reached out to my contacts at the local councils to see if anyone had small manageable projects they needed a consultant helping on. I made it clear that my biggest interest was in developing and delivering workshops for the community around living simple, sustainable and meaningful lives but that I would also consider research based projects that fit within my skill and knowledge base. From this initial call out I got two projects:
Developing a 3 year Environmental Management Plan for the City of Prospect. This has been a large and ongoing project and we’re about half way through the process now a year on from when we initially started. It’s been a great project with lots of community and staff engagement.
Developing a series of Biodiversity Trails for local schools within the Campbelltown City Council. This was also a large project for me and took me much longer than I expected to complete thanks to the ups and downs of my health.
From doing these two projects I’ve learnt a lot about my current capabilities and about the processes and people I need to have in place if I’m going to be successful at working for myself and delivering projects on time and within budget for my clients while maintaining (and if possible improving) my health.
I’ve learnt that when proposing timelines for larger projects like this, I need to schedule in additional time than I think it will take me to allow for crashes and other health related delays. It’s also good to have someone lined up as a backup person (a subcontractor) to complete the work if my health gets to a point that I’m unable to do it.
These two large projects have also led to a few workshops with schools and the Council libraries on topics such as revegetation and up-cycling materials. These have been great for me because, although they don’t pay as well, they have a clearly defined timeframe and allow me to connect with a large group of people within a short space of time. I do need to make sure I schedule time to rest both before and after these workshops but because there’s no ongoing ‘stress’ related to completing them, I seem to recover quite quickly afterwards.
The second branch of the business is invisible illness advocacy. This actually started before I’d established LiveKen, with the idea of a picture book about invisible illnesses and chronic pain. The successful Kickstarter campaign we ran for the Foggy Frog and the Pain Gang picture book, has allowed me to focus on finishing the pictures with the knowledge that I will be able to publish and over 100 copies of the book will be going out into the hands of people who live with an invisible illness to share with their friends.
This is another project that has taken me MUCH longer than I expected it to. We are finally at the point where I’ll be getting quotes for printing within the next few weeks so keep your eye out for more information about this in the next month or so. The plan is for the picture book to be the first step in a larger awareness raising campaign.
This post is getting quite long, so I might stop there today and do a detailed hints and tips post later.
What tips or tricks do you have for working with a chronic illnesses?
Only the one post this week as I’ve been unwell all week. Catching a cold on top of chronic illness makes everything so much more difficult and today is the first day I’ve felt well enough to do much at all.
Yesterday there were protests around the world to raise awareness of Myalgic Encephalomyelitis and the need for more research funding. I wasn’t able to go to a protest (nearest one was interstate) so I posted links to my social media accounts to promote it.
The millions missing campaign used empty shoes to represent how many of us are missing from every day activities.
What is your favorite go to beverage? Water, coffee, tea, coke, soda (non-alcoholic)
Water is my normal go to beverage. Occasionally I have bubbly water from the soda stream or a tea, but most times I just have water straight from the puratap.
Can you change a car tire?
To be honest, I don’t know. I’ve never been in a situation where I’d need to and I’ve never tried. I know the theory of how to do it though.
Are you a listener or talker?
E would say I talk a lot, but usually only with him. In general, I’m a listener.
Would you rather have no internet or no cell phone?
No cell phone. I could live without my phone as I’m home most the time so I can use the home phone but the internet is a large part of how I connect with the outside world.
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 being well enough to go along to the rogaine with E on the weekend. I’m also glad E liked his birthday present (even if he guessed what it was the day before his birthday)!
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In this next week I’m looking forward to feeling better! I feel a little better today and I hope that continues as the week progresses.
I meant to do this post last week for May 12 International Awareness Day but brain fog made me forget the date and I didn’t have the energy last week to write it anyway so here it is today…
A little background for those of you who haven’t been following me for very long. For over 3 years now I’ve been living with chronic pain and fatigue as my daily companion. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Pelvic Congestion Syndrome.
I’ve already done a day in my life post, since then I have improved to the point that I try not to nap during the day any more.
What I do in a week
The following is what I did in the week starting Monday 9 May… It gives a good idea of what I do most weeks. The types of appointments and work I do varies week to week and the number of crash days also varies.
Monday
I wake up slowly at around 8:30 am noticing the heavy and aching feeling that’s always there. After stretching in bed and slowly getting up I measure the 0.5mL of testosterone cream and rub it into my leg and then slowly get dressed.
After getting dressed, I sit back on the bed and spend some time checking my emails and my to-do-list, and waiting for the heaviness and shakiness to settle enough to get up and make breakfast.
I’m feeling rather out of it today so I take my time doing my weekly budget review and spend some time online reading blogs. The fact that the weather is very wet and cold today doesn’t help my pain levels. I decide to hop in the bath and read until lunch time.
Being a Monday, it’s my day to do a bike ride. Before having lunch I decide to do a 10 minute easy ride on the stationary bike in the shed because it’s too wet to go out. I reheat leftovers and put the tv on while I eat lunch.
I’ve got some work I have to do today so I spend most the afternoon doing that. Again, tasks that would normally take half an hour to an hour to do are taking me over 3 hours.
Before long, it’s 5:00 pm and my brain is like mush, I put the TV back on and only get up to make a simple dinner and to do some stretches because my pelvic pain is flaring tonight.
At around 9:00 pm I get up, take my pills, have a shower and head to bed. In bed, I take some time to review my daily to-do-list and write a short list for tomorrow. Lights out by 10:00 pm.
Tuesday
I don’t wake up until 9:00 am today. Before even getting out of bed I decide to check my emails and my to-do-list because my body doesn’t want to cooperate.
Today I’m heading to my mum’s to help her with her assignment so after getting dressed and having breakfast I drive down there. Most of the day is spent helping mum. When we finish going through mum’s assignment in the afternoon, we go for a short walk and then I sit down and do my weekly blog posts before attending an online meeting for the conference I’m helping to organise.
By the time the meeting ends my sister has got home from her school placement and we head into town for dinner with E and a few friends from his office. Because E was drinking, I drive us home at the end of the night (that doesn’t happen very often).
It’s a late night out for me but I’m in bed by 10:30pm
Wednesday
Ok, so I did a bit too much Tuesday and that time of the month is starting so pain and fatigue are very high today.
It’s definitely a crash day which means I spend most the day in front of the tv not doing much. I do make myself do my 10 minute ride on the stationary bike because some movement helps with pain levels and I order a few things I need online (cat food and my calcium and magnesium supplements). I also prepare the dough for baking bread the next day.
I shower both in the morning and the night to help with pain. In bed by 9:00 pm.
Thursday
I’m awake at 9:00 am. Fatigue is slightly lower today and I do have a doctors appointment I need to go to. The day starts with a shower and breakfast. I also throw the bread in the oven to bake.
Before heading to my doctors appointment I throw on a load of washing. I drive to town and visit my doctor to get a script I forgot to ask for in my check up the week before. After that I buy lunch and eat with E in his office before I drive home and hang out the washing.
The rest of the day is spent resting in front of the tv, until I shower and head to bed again at around 10:00 pm.
Friday
Up at 8:30 am today and I do feel slightly better today. Dad’s over for lunch today so that takes up most my day.
I do manage to send an email out inviting people to a meeting next week for the conference organising stuff and to do a short ride on the stationary bike and a short walk with my sister who is over for dinner.
In bed by 10:15 pm.
Saturday
After getting up at 9:00 am I head down to mum’s and spend most the day out with my sister op-shopping. I know that I’m doing too much today but I’m enjoying a day out with T while I can.
some of the books I picked up on our op-shopping tour.
In the evening, E makes dinner because I don’t have any energy left and I’m in bed by 9:30 pm.
Sunday
Up at 9:00 am today and throw on a load of washing straight after breakfast. I then sit down and rest for a while before baking a cake. The whole morning is broken down between baking, washing, and doing low energy activities like reading blogs.
I reheat left overs for lunch and then read some of the children’s books I bought yesterday until E’s family comes over for afternoon tea.
I also spend some time prepping for baking bread on Monday and putting together some lego.
I have a bath in the evening after dinner as I’m feeling very achey and end up in bed late at 11:00 pm mainly because I relax too long in the bath.
That was my week last week.
As you can see, my days vary a lot. This was a fairly busy week for me as there were a few days in there where I wasn’t able to have any rest breaks throughout the day at all. That isn’t typical but the rest of it is. I try to find a way to balance work, social, exercise and rest each week.
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)?
Liveken - my chronic life journey 