Tag Archives: Myalgic Encephalomyelitis

“You’re looking good”…

10 Dec 15
Megan
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I’ve lived with chronic illness to some extent my whole life but for the last 2 1/2 years illness has been a major contributing factor in my life.

One thing I’m noticing more and more as I learn to accept, and live with, my chronic illnesses and the disabling symptoms they impose on my daily life is the innocence and ignorance of many who do not suffer from them.

It’s not only what’s happening in my life, but what I hear from others online and in person who are also suffering from invisible chronic illnesses.

The key word there is INVISIBLE…

Whenever I meet people in public I’m asked “How are you going?” or told “You’re looking good” and when I hear these things I never know how to reply.

On the outside I look like any other healthy person.

I walk normally most of the time (no obvious limp) although this can be difficult when I’m in a lot of pain or when the fatigue is so bad that my legs feel like lead weights. I look bright and happy (because I am happy) even when inside my body is screaming at me and my brain is in a dense fog.

Yes, I may ‘look good’ but I don’t feel good but I don’t want to be a downer for everyone around me so I don’t necessarily want to tell people I feel like crap.

How should I respond to these comments and questions?

I’ve seen different responses online from others going through the same thing.

Some people keep all the pain and suffering inside. They tell others they’re fine and try to ignore what’s going on then get upset and angry at the people asking the questions because they don’t understand.

Others tell anyone and everyone what’s going on with them. This can lead to people getting frustrated at you. People can begin to think you’re not really as sick as you say you are.

Personally, I think something in between is the best road to take. When answering questions or talking to people about our health we should take into consideration who we’re talking to and what their relationship is with us.

Even those closest to us don’t need to be constantly told what we’re feeling. Yes, they need to understand but we also need to understand it can be hard for them to cope, especially if you fell ill after you were close.

Responding to “You look good”

If I don’t know the person at all, I’d just reply ‘Thank you’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘Thanks, I don’t feel that good’.

If I’m close to them I might share more detail about how I’m feeling, especially if how I’m feeling will impact on what we’re planning to do together.

Responding to “How are you?”

If I don’t know the person at all, I’d just reply ‘Fine’ or ‘OK’.

If they know about my condition but I’m not very close to them, I’m likely to say ‘As well as can be expected’. If they’re interested I might go into more detail afterwards.

If I’m close to them, I’d give a similar answer to above but would usually give them more detail.

How do you respond to well meaning but difficult questions and comments?


The Difficulty of Pacing: Work

03 Dec 15
Megan
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I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.
I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.
The issue here is the inconsistency. It’s something I can relate to strongly, on the days I need to go out of the house I tend to find myself doing double or more steps than on the days I’m home and can pace myself. I’ve also found it harder to avoid crashes since I’ve started working regularly.
My exercise physio has made it clear to me that the most important thing in order to avoid crashes is to be consistent. As the reader above stated, this isn’t always possible. It’s difficult to maintain a consistent level of activity when you have to do more on certain days due to engagements you can’t (or don’t want to) avoid, things like doctor’s appointments, work, important social events.
One thing I’ve done to try and help with consistency, is to consider it more on a week or monthly basis (rather than a day by day basis). That is, like the reader above, some days I do a lot more but I balance that out by doing a less on the other days.
I’m not completely happy with that approach though because some days I’m doing less because (like today) I literally have no energy left. What I’d like to do is find a way to pace so that even though I do more some days and less on others, I’m not doing the less because of crashes. I want to be doing it because I want to.
Pacing is about setting base levels and sticking to them for as long as necessary before slowly increasing them.
Since I’ve started working again, I aim to do a minimum of 5-8 hours a week. I break this down into smaller time slots. Some days this may be an hour at a time, other times (like today) it’s in 5-10 minute blocks…
I’m lucky in that most the work I’m doing I’m able to do from home and sitting down, but I still need to pace myself. I need to find the right balance of mental and physical activity to maintain my health.
In an ideal world, we’d be able to only work what fits with our health but in some roles (as with our reader) there are minimum shifts that you can do so if you’re going to work at all it’s likely to be too much to start with.
In response to the reader’s concerns I’d like to offer some advice…
If it’s possible to take short breaks, or even just ask for a stool at the counter (if you’re in customer service), that would give you a chance to pace yourself even within your shifts. However, knowing the area you are working in I know that the workplace isn’t always willing to be that flexible.
From what you’ve said to me it does sound like you are doing the best you can in your situation. It’s great that you’re tracking your activity levels and maybe you could look at working out what your baseline is.
How do you pace?
If you work, how do you manage the difficulties this can raise?

And the weather changes again…

22 Nov 15
Megan
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The weather here has been up and down with some extreme heat over the last few weeks. Unfortunately, this weather isn’t conducive to me being at my best.

I have been struggling a lot over the last week in particular with very high pain and fatigue levels. Keeping up with the daily blog posts and doing a minimal amount of other work or appointments takes most of my energy and the rest of the time has mainly been spent doing mindless screen activities (tablet games or tv).

My step count has dropped again to a minimum of 2,000 (half the minimum I’d built up to) but I’m not too concerned about that. The thing I’m most to concerned about is if this is a precursor to a crash like I had last year (which I haven’t fully recovered from even now).

I’m hoping by proactively resting and listening to my body I can avoid a major crash.

The problem is that I still don’t really know what caused the crash last year so I don’t know what I can do to avoid it.

On the other hand, I don’t want to go backwards because I’m being too cautious… so I am still trying to maintain a minimum level of activity and because it’s the newest and most meaningful addition to my routine, I’m trying to prioritise my work activities.

Now it’s time for another rest…

Do weather changes affect your health? What steps do you take to minimise the impact?

Life with chronic illness: Dealing with Emotions

27 Oct 15
Megan
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Imagine waking up one day and finding that your whole life has changed. Just like that you couldn’t be who you thought you were.

One day you are happily working full time in a job that makes you feel like you’re making a difference. You’re keeping healthy by visiting the gym most days of the week, walking whenever and where ever you can, and working on your diet (eliminating foods that you react to). It’s important to you that you’re keeping your brain active so, on top of all those other things, you’re studying to improve your skills in a field you want to expand into.

The next day you’re curled up in a ball on the couch, struggling to stay awake and living with pain 24/7. You can no longer do any of the things you could do the day before. Dreams you thought were certain to come true in your future are now uncertain, possibly even gone.

Over time, and with the help of a large team of medical professionals and other support people, you’re able to slowly build up your ability to do some of the physical and mental activities you were able to do before but you’re still not 100%.

This whole process is bound to stir up emotions. Lots of them! Both in yourself and in those who love you and care for you. How do you deal with these emotions?

Life with chronic illness is an emotional rollercoaster and you tend to cycle through the various stages of grief and acceptance throughout your life including denial, anger, fear, and acceptance.

There are several different models outlining the stages of grief and how to deal with them. To find out more about the stages of grief and acceptance specifically related to living with chronic illness, check out this free e-book from Katherine T Owen from Healing CFS/ME and this post from Rev Liz.

Today I don’t want to focus on what the stages are but on how to deal with our emotions in general.

Lately, I’ve been struggling with feelings of anxiety, fear and depression as I try and reconcile my preconceived notions and dreams (those I had before I got sick) with my reality. I had at least a week of feeling overly emotional and struggling with bursting into tears for no apparent reason at times.

Now that I’m starting to feel better, I’d like to share some tips about how to cope with these emotions. These tips are suitable for dealing with any extreme emotions (not just negative ones). This is important because if you are living with ME/CFS or Fibromyalgia any stresses and extreme emotions can impact on your health.

  1. Control what you can, accept what you can’t. This is a statement that’s easy to say but hard to implement. It seems pretty clear that you can’t control everything in life. When you live with a chronic illness this is doubly true. You loose control of any predictability in your day to day life in terms of pain and fatigue levels and what you’ll reliably be able to do. You find yourself unable to commit to activities or events, and when you do you may find yourself cancelling them often. What you can control is how you deal with these issues. Accepting that your life needs to be flexible helps you to reduce your stress levels. Determining your baseline and attempting to develop a routine that keeps you close to that baseline most days enables you to slowly build up what you can do.
  2. Be Mindful. This links in closely with the tip above. By living a mindful life and trying to stay in the moment, you can focus on the things you can do and be grateful for what you have in life rather than focusing on those things you can’t control.
  3. Have someone to talk to. This would preferably be someone outside of your immediate family. Why? The people around you are going through their own struggles learning to accept and adjust to the major changes to their lives that your illness has been responsible for. Having someone outside that you can talk or vent to is important for maintaining mental health. It’s important not to bottle everything up inside until it explodes.
  4. Be as active as possible. I’m not saying go running, or even go for a walk around the block. What I am saying is do what you can to keep your body as healthy as possible. This may be as little as a few stretches in bed. I find when I’m able to be more active I’m able to clear my mind more and deal with the emotions that are there.
  5. Sit with your emotions. As I’ve already mentioned, it’s important not to bottle up your emotions. I’ve found if I allow myself to cry if I need to and just sit focusing on my breathing and not trying to suppress my feelings it can help me work through them. You could also try journalling to get everything out.

These tips are specifically focused on dealing with the emotions that arise because of chronic illness in your life. They are not the be all and end all, and I’m sure you can add some more of your own, but they are a starting point. We have previously done a post on being mentally strong which also holds some helpful tips.

Do you have any tips of your own that you’d like to share?

How do you cope when your emotions are running high?

On Routine and Pacing

22 Oct 15
Megan
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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?

I’m not “normal” but I’m grateful

20 Oct 15
Megan
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What is ‘normal’?

I don’t think I’ve ever been what someone would classify as ‘normal’ but for the most part I’m happy with who I am.

Ever since I was young I haven’t been normal:

  • I don’t cope with late nights and I never really did. Even before the Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) and Fibromyalgia reared their ugly heads in full I couldn’t stay out late without ending up in a lot of pain and struggling for quite a while afterwards.
  • I’m allergic to so many things. At school I couldn’t wear half the uniform as I was allergic to the wool it was made from. I can’t eat dairy or gluten without ending up with a major rash. I react to most the medications I’ve tried for pain management.
  • I’m a ‘greenie’. I don’t use shampoos, soaps, disposable sanitary items or even toilet paper most the time (more things I’m allergic to). I now make my own laundry liquid, I try to garden (something I’m not that good at yet), and with almost everything I do I’m considering what impact it will have on the environment as well as my health.

The things I’ve listed above are things that I’ve done, or wanted to do, for most of my life. Since getting sick I can add a whole new list of things that are not ‘normal’…

  • I’m in pain 24/7. Most nights I hardly sleep due to it (thanks painsomnia).
  • My energy levels don’t allow me to do too much in one go. I need to pace myself and only manage a few hours of work a day (that includes writing this blog).
  • My social life is even further restricted by what my body allows me to do. I can’t go on long hikes and do many of the activities I participated in before I got sick.
  • My life revolves around listening to my body… Something we all should do, but don’t.

Given all the ways I’m not normal, I could be forgiven for getting depressed and blaming the world for what’s wrong with me but I’m not and I don’t.

I’m grateful for everything I’ve been through. All the heartache and pain it causes has helped me to learn to be grateful for what I do have. The illness has helped me realise that I have enough in my life. I might not have everything I want but I have a roof over my head, food to eat, clothes to wear, and friends and family to love and support me.

Without everything I’ve been through I wouldn’t be who I am today. I wouldn’t have had the courage and the strength to step up and make my voice heard. I would still be working a full time job (in a field that I loved), spending all the money we earned, and pushing myself to keep going at a pace that was just unsustainable.

Before I go ill I worked full time, studied full time and exercised daily, all while trying to have an active social life. Since getting sick, I’ve slowed down to a pace where I can focus on the little things and work out what is really important to me. This has allowed me to focus my energy on these things; spending time with those I love (family and friends), making as little impact as I can on the environment, and helping others make a difference in their own lives (work).

2014-12-14 17.26.17

I’m not ‘normal’ and I’m grateful for that!

I am who I am because of what I’ve been through and I wouldn’t change it for anything

well, maybe for a life with slightly less pain… but then I wouldn’t be who I am today.

What do you have in your life to be grateful for?

Living with Chronic Pain

Living with Chronic Pain – Top 3 Tips

21 Jul 15
Megan
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As I mentioned last week, it’s National Pain Week in Australia this week. I will be sharing my story over at the National Pain Week website and at My Invisible Life later in the week. I’ll also be talking to local media, starting with ABC Riverland Today at 10:45 this morning.

Living with chronic pain can be frustrating, overwhelming and disempowering, however it is still possible to live a meaningful life while coping with it.

With over 2 years experience of living with chronic pain myself, and having spoken to many people who have lived with it a lot longer than I have, I’ve found many tips and tricks that have helped me live a reasonably quality and meaningful life despite constant pain and fatigue. Below I share my top 3 tips for living with chronic pain:

  1. Listen to your body and pace yourself
  2. Don’t stop researching and trying new things
  3. Eliminate the unnecessary so you can focus on what is meaningful to you

Listen to your body and pace yourself

One of the first things I learnt on my journey with chronic illness is that my limits had changed. Before chronic illness I was a high achiever who had to always be doing something active and challenging. Since becoming ill, I still need to be doing something but I’ve had to cut back on the level of activity.

On a day to day basis I need to consider how I am feeling and plan my day accordingly. If my body has higher pain or fatigue levels than normal, or my brain is complete fog, then I know I need to step back and rest most of the day. If my pain levels are lower than normal or I’m feeling energetic (doesn’t happen that often but it could!) I need to remember not to push too hard or I will crash later on.

 

In general it’s best to aim for consistency and to allow your body to rest when it needs to.

To give you an example, I’m just coming out of a 2-week crash so my step count and activity level has been cut way back to an amount that i can maintain even if I’m feeling really bad. I have to minimise work and social activities and focus on resting. On any given day I usually only have one or two key activities lined up, which could be as simple as make a meal. While I was in the crash I didn’t really do any activities and most days were spent on the couch.

Don’t stop researching and trying new things

For many of the causes of chronic pain there is no known reason or cure for the pain. As a result there is usually always someone claiming to have the solution. Although it’s important to consider each solution offered to you carefully it is good to keep an open mind and try many different things.

What works for one person may not work for another.

I’ve tried multiple prescription drugs, none of which helped. In fact, most of them caused side effects worse than the symptoms they were meant to be helping. For other people though these drugs have helped.

I’ve tried (or I’m trying) physiotherapy, various exercise programs with guidance from an exercise physiotherapist, acupuncture, breathing techniques, a tens machine, and hypnosis.

Using the TENS Machine for Pelvic Pain

Using the TENS Machine for Pelvic Pain

Eliminate the unnecessary so you can focus on what is meaningful to you

Because of my limitations I have gone through phases where I’ve felt that my life had no meaning. To help me get over that I’ve had to focus in on what is meaningful to me.

I’ve worked on identifying my values and changing my lifestyle so what little energy I have is used doing things that fit with these values.

Since living with chronic pain I have taken up blogging so I can still contribute to the wider community, I’m focused on shopping and living as sustainably as possible, I meditate daily and practice gratitude, and I make time each week to spend at least an hour with family and friends.

I have eliminated my gym membership (I can’t exercise to that extent at the moment any way), full time employment (again beyond my limitations), and cleaning the house (we get a cleaner in fortnightly to do the major cleaning, and I’m slowly decluttering so there’s less to pick up and care for around the house).

Bonus Tip: Have Fun

I personally believe the most important tip I’ve been given on my journey towards a simple, sustainable and meaningful lifestyle while living with chronic pain, is to focus on what makes you happy and to have fun.

Tasks such as cleaning can be outsourced and when you have limited energy to contribute to society you are more likely to be happy with your life if (as in the tip above) you focus on what is meaningful to you and make sure you do at least one thing to have fun each day.

Whether it’s taking the time to look out the window and connect with nature, reading a good book or spending time with family and friends, it’s important to make time for fun in your life.

What tips would you give someone who was living with chronic pain and struggling?

Just One of Many: Difficult decisions with Invisible Illness

09 Sep 14
Megan
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This year’s theme for Invisible Illness Awareness Week is “Just One”.

Invisible Illness Awareness Week 2014

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

30 Things About My Invisible Illness You May Not Know

02 Sep 14
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Next week (8 – 14 September 2014) is Invisible Illness Awareness Week. I will share my ‘Just One‘ story with you next week. Today I’m completing the 30 Things Meme.

30 Things About My Invisible Illness You May Not Know

  1. The illness I live with is: Pelvic Congestion Syndrome, Fibromyalgia, ME/CFS, plus several other conditions (asthma, osteopenia, allergies, etc)
  2. I was diagnosed with it in the year: 2013 (asthma and allergies since early childhood)
  3. But I had symptoms since: my whole life
  4. The biggest adjustment I’ve had to make is: redefining what success means to me and what I can realistically achieve in any set time period.
  5. Most people assume: That pain and fatigue is ‘normal’ and that it is manageable.
  6. The hardest part about mornings are: Getting Started…
  7. My favorite medical TV show is: This varies a lot but at the moment, One Born Every Minute
  8. A gadget I couldn’t live without is: My food processor… it makes making meals easier
  9. The hardest part about nights are: The pain
  10. Each day I take pills & vitamins. (No comments, please) – this is likely to go up again soon thanks to the low bone density.
  11. Regarding alternative treatments I: consider all options and try out anything that seems reasonable
  12. If I had to choose between an invisible illness or visible I would choose: This is difficult, but I think I’d say stick with what I know…
  13. Regarding working and career: I don’t know what is happening anymore… everything’s been on hold for well over a year now and I haven’t really made much improvement recently.
  14. People would be surprised to know:  I’m not depressed! I’ve managed to keep a positive frame of mind the majority of the time.
  15. The hardest thing to accept about my new reality has been: The uncertainty. 
  16. Something I never thought I could do with my illness that I did was: Raise $,7500 to publish the Foggy Frog picture book (still in progress).
  17. The commercials about my illness: I haven’t seen any for the main ones.
  18. Something I really miss doing since I was diagnosed is: Walks/Hikes with my husband.
  19. It was really hard to have to give up: Control. I never know what I’m going to be like and I can’t do everything I’d like to any more. My ‘ideal’ timelines for things like starting a family and major holidays have all gone out the window.
  20. A new hobby I have taken up since my diagnosis is: Blogging and sewing
  21. If I could have one day of feeling normal again I would: Go on a hike with my husband and have a lovely dinner out.
  22. My illness has taught me: To listen to my body and be more assertive with what I need/want.
  23. Want to know a secret? One thing people say that gets under my skin is: Everyone gets tired/sore
  24. But I love it when people: Visit me at home for games/a meal.
  25. My favorite motto, scripture, quote that gets me through tough times is:

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26. When someone is diagnosed I’d like to tell them: Listen to your body and do what is best for you. 
27. Something that has surprised me about living with an illness is: I’m able to cope with much more pain and exhaustion than I thought was physically possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Make me breakfast in bed and gave me permission to just rest.
29. I’m involved with Invisible Illness Week because: I feel it is important to raise awareness of what people actually go through. These illnesses aren’t really well understood in the general public and this is an important first step in creating a more understanding community.
30. The fact that you read this list makes me feel: Grateful. You have taken the time to try and understand a bit better what it is I go through on a day to day basis.

Life with Chronic Illness – Pacing and Routine revisited

25 Aug 14
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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:

  1. 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.
  2. 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?