Tag Archives: me/cfs

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
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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?

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
Megan
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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?

ME/CFS Primer for Clinical Practitioners (2014 revision)

19 Aug 14
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As many of you would be aware, I’ve been struggling a lot lately. Between the process of coming of the Lyrica and an increase in social activities I’ve really overdone it the last few weeks. My doctor is starting to reach the end of his ideas for what we could try to help me manage my symptoms and lifestyle with them. I have begun doing more research into what is out there and what I should be doing. One document I’ve been looking at is the ME/CFS Primer for Clinical Practitioners from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Click to view document

Click to view document

This document outlines the most recent research, diagnostic and treatment options for doctors treating people with ME/CFS. I found it useful to see where research is at, what drugs and other treatments are recommended for management.

It has reminded me that I really need to get back into managing my lifestyle, pacing and learning to say NO to things that aren’t helpful for me.

I have begun doing this with the decision to come off the Lyrica. I’m now about half way through the weaning off process and, although pain has risen slightly and I’m finding I’m having a rough time emotionally right now, I feel this has been a good step for me.

My brain is starting to clear again, while on Lyrica (especially at the higher doses) I was struggling to think at all. Now I find my thinking is back but I’m still struggling with word retrieval and a few other brain fog symptoms.

I am now able to once again feel when my body is saying enough is enough and, even though I haven’t been doing well listening to it so far, this is going to be beneficial as I ramp up the pacing again. On the Lyrica, the sore throat and the increased muscle aches weren’t there and I think that is part of the reason I kept pushing myself to crashing point.

When I see my doctor tomorrow I’ll be discussing the following ideas/problems:

  • Pacing
    • how to best balance pacing with still having quality of life (E is concerned that if I pace too much I’ll be limiting my quality of life)
    • Housework as part of exercise routine
  • Revisiting a nutritionist/naturopath to make sure that my diet is the best it can be for increasing my health and to find out which supplements I should be taking.
  • Emotional support
    • I’m struggling with the lack of control I have at the moment with where my life is heading. I keep getting worried about never being able to start a family because of my health.
  • Getting a referral to another gynecologist for a second opinion on the Pelvic Congestion Syndrome treatment
    • The pain has been increasing for the last month or so and Depo Provera isn’t healthy to remain on long term so I need to find a different treatment option.

If you, or someone you know is suffering from ME/CFS I would definitely recommend taking a look at the Primer above and even sharing it with your doctor/medical professionals.

What treatment options do you use for chronic fatigue or pain?

Do you think this primer would be helpful when talking to your medical team/doctors?

Post #200 – a reflection on My Chronic Life Journey to date

12 Aug 14
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Thanks

Thank you all!

I wanted to take the time today to say thank you to all of you; those of you who have been following from the start and those of you who have just started following me here.

This blog started as a place for me to share my progress with my illness (at the time undiagnosed) with my family and friends who were interested but I didn’t see much. It has grown into so much more!

With the support and input of many of you, we have begun the process of setting up a campaign to help raise awareness of chronic illnesses that don’t have visible symptoms. The Foggy Frog picture book, which many of you helped fund, is on it’s way to being published either later this year or early next year. Once it is published we’ll begin promoting and considering what the next phase of this campaign will be. One thing I do know is that the campaign will be being run through LiveKen, a business we’ve established for this campaign and to help people discover how to live simple, sustainable and meaningful lifestyles.

Together we have defined what it means to be mentally strong when living with a chronic illness.

11 tips Mental HealthYou have been with me as I have been diagnosed, first with Pelvic Congestion Syndrome then Fibromyalgia and ME/CFS, and while I’ve been experimenting with different treatment options.

Looking back I can see that I have improved a little, and we have achieved a lot, in less than 12 months. For example, I am now able to do some basic housework and cooking and have been exercising daily. Both things I would not have been able to do when I first began this blog from my couch.

So, THANK YOU, to each and every one of you who have been a part of this journey and please continue following and sharing with me both here and over at LiveKen as we continue on our journey and discover how to live a life that is meaningful and fulfilling with multiple chronic illnesses.

 

The Top 5 things I’ve learnt in a year of chronic illness

27 May 14
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I have so many posts I need to write and share with you over the next few weeks including book reviews, guidance for setting and achieving goals with a chronic illness, and requests for help and feedback on a couple of big projects I’m working on. I look forward to sharing all of these with you and with setting some little challenges to help us all move towards being the best we can be starting with today’s post: Lessons learnt in a year of chronic illness.

The last year has been very stressful and busy for me but through all of this I feel I’ve learnt a few things about myself and how I can accept and live with my chronic illnesses.

 

Photo (c) E. S. January, 2014

Photo (c) E. S. January, 2014

The Top 5 Things I’ve learnt from my chronic illnesses

  1. Everyone’s experiences are different. Each and every person who suffers from a chronic illness (even the same illness) has different symptoms and reacts differently to different treatments. For example my main symptoms are extreme brain fog, constant pain and constant exhaustion. A friend of mine who also has ME/CFS doesn’t have the constant pain, instead her worst symptom is sensory sensitivity (I struggle with this but not as much). For some people antidepressants such as Amitriptyline (Endep) help with pain and sleep issues, over the last 2 months I’ve found it doesn’t help me. I have found though that a TENS machine helps with some of my pain and that meditation and being mindful is the best thing I can do to help me be able to focus better and actually achieve the things I want to do within my limits.

    2014-05-15 07.36.00

    Found on Facebook

  2. I’m stronger than I thought. Many people around me, including my husband, doctors and close friends, have commented on how well I have been coping with this illness. I’ve had a few people actually tell me it’s OK to share my negative thoughts, as if I was just hiding them away. Somehow I have managed to stay mainly positive about my situation. Yes I’ve had a few bad days spent crying and feeling sorry for myself, but overall I’ve seen the benefits of having more time to do the things I need to do to feel better, to relax and to reassess my life.

    Celebrating the success of the Foggy Frog Kickstarter Campaign

    Celebrating the success of the Foggy Frog Kickstarter Campaign

  3. Family and community are the most important thing. Having a strong relationship with my husband and both our families, as well as our close friends, has meant that I’ve had ongoing support since I first became ill. I think this has been a major factor in my ability to stay positive. However, sometimes I’ve found that although they try to understand (and I do love you all for it) they don’t always really get what I’m going through and why I’m making certain decisions. This is where my new found group of friends, here and on Facebook and Twitter, has really helped. I’ve made connections with others who are going through the same things as me, I’ve been able to help them and they’ve been able to help me.

    My husband and I with our closest friends on our wedding day. Photo (c) Doug Quine Photography, November 2011

    My husband and I with our closest friends on our wedding day.
    Photo (c) Doug Quine Photography, November 2011

  4. It’s important to have something you’re passionate about. The first 6 months of being ill were the most difficult for me. During this time I had quite a few negative pity days and I struggled to find ways in which I could feel useful and purposeful in my life. Then I began blogging, I made new friends and I started working on the Foggy Frog Campaign. I realised that even if I did not have the enery to work fulltime, be out in the world talking to people or researching and developing key sustainability strategies and projects I could still be useful. I just had to find a way to work within my limits on a project that I felt passionate about and that I could engage others in as well. I’m still passionate about the environment and sustainability but at the moment my strongest passion is raising awareness and advocating for the chronically ill using Foggy Frog and the Pain Gang as a tool.

    Foggy Frog (c) Megan S, January 2014

    Foggy Frog (c) Megan S, January 2014

  5. Being ill opens up new and exciting opportunities. Before falling ill I was working fulltime in a job I enjoyed. It wasn’t completely my dream job (half was, the other half was necessary work in the position but not what I really enjoyed) but I was fully engaged, enthusiastic and passionate about the work I was doing. Then I got sick. I still wanted to do the work, but I didn’t have the energy or strength to keep it up. Slowly, as my health has improved and stabilised slightly, I have found new passions in chronic illness awareness and advocacy, mindfulness, meditation and sewing. I have also reignited a passion for yoga and a desire to run my own business. I have previously tried working for my self doing consultancy work with people I had worked with in the past. I really enjoyed the flexibility and variety this work gave me but I had not been making enough money for us to live off. Once again, the desire to work for myself has come to the surface. There are pros and cons to this and I will assess those in a future post but it is something to seriously consider at this point in time.

    Found on Facebook

    Found on Facebook

Overall, having a chronic illness has made me realise the importance of a great support network, a positive and flexible view on life, and keeping yourself passionate and engaged in what you do.

Chronic illness takes away so much and can make it difficult to be dependable and spontaneous but there is also so much you can learn and do when you accept that a chronic illness is for life and you have to learn to live with it. Consider your options and make the right decisions for you right now. When living with a chronic illness I believe it’s important to live in the moment, don’t compare what you’re able to do now to what you used to be able to do and don’t spend all your time worrying and stressing about the future.

Found on Facebook

Found on Facebook

How do you want to feel now?

What can you do to feel that way?

These are the questions I’ve started asking myself daily. Try it, think of one thing you can do today to make you feel happy, loved, accomplished or whatever feeling it is you need to feel right now.

If you focus on what you can do and take action every day (no matter how small that action is) you will keep moving forward.

My challenge for you today is to ask yourself the questions above and let us know what one thing you’re going to do today to get closer to how you want to feel.