Tag Archives: pelvic congestion syndrome

Week 7 No Buy Challenge: Celebrations, side effects and PEM

19 Jan 16
Megan
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Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch... Water and tea, tablet and headphones, tv controller...

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

  • I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
  • High levels of pain down the inside of my limbs (especially my left leg).
  • Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?


Share your world: Week 1 2016

07 Jan 16
Megan
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Last year was not a successful year for me in terms of blogging. Not only did I not post much but the posts I was getting up weren’t that popular. So this year I’ve decided to get back to the sort of posting I was originally doing. Instead of just posting about things related to living a simple, sustainable and meaningful life with or without chronic illness I’m going to do a wide variety of posts that allow you to get a better insight into my life. I’ll talk about my work and social commitments, the ups and downs and the everyday. I’ll also participate in several challenges throughout the year. Right now that means participating in the 20 Week No Buy Challenge with Rach (this is week 6 now) and I’m going to participate in Cee’s Share Your World Challenge, a weekly posting challenge with the following format:

Each week Cee will ask you:

  • To answer three random questions each week.
  • Respond to a fourth item (I will randomly chose from this list)
    • Making a List out of a topic
    • Completing the sentence I start
    • Answering a Would you Rather question
  • Bonus Question is always the same  “What are you grateful for from last week, and what are you looking forward to in the week coming up?”  Because we all need to be reminded that there are many things in our lives to be grateful about.  

So here we go…

Share Your World – Week 1

As a child, who was your favorite relative?

This is a hard one for me to answer, growing up in a very large extended family with divorced parents (My parents each had multiple – 5 and 6 respectively – siblings and many of them had children which meant many cousins for me as well). I think in answering this question I’m going to have to expand it to “who were your favourite relatives?” as two stand out to me at the moment as being top of my list (the rest of you are still important parts of my lives and I love you lots but as a child these two seemed to be the most important in my life).

My mum

Yes, this may seem cliche but my mum has always been one of the most important people in my life and the one I knew would always be around to comfort me when I needed it.

She was the one that was there reading us bedtime stories, taking us on day-trip adventures where we’d hop on public transport and just travel for the day (this might mean the bus and a train trip or bus and tram).

She’s still the one I go to when I need advice. I can talk to her about anything.

My Aunty Rachel

Rachel is the youngest of my aunties. She’s only 9 years older than me and because of that I think I always felt she was more like one of us (my cousins and I) than one of the ‘older’ generation.

Growing up, she would have all of the cousins around to her place (when she had her own place with her boyfriend) and we’d share a meal or go to the beach. She was always participating in interesting activities like belly dancing and yoga and she always loved writing (she has her own blog now if you want to check it out).

I vividly remember when she moved away from Adelaide. I don’t remember how old I was but maybe early teens. We went with gran and some of the extended family to see her off at the bus station and I remember feeling like I was loosing someone very close to me. I’d say I was devastated, I couldn’t stop crying even after we’d said goodbye. I’m sure it was at least a good 10-15 minutes after she left that I finally managed to stop crying.

If you could be a tree or plant, what would you be?

I think I’d be like the weeping mulberry in our back yard.

Our weeping mulberry

In previous years it’s provided a place for birds to nest, it provides delicious fruit for both us and the birds, and provides shelter from the sun. In a sense it’s a nourisher and protector.

Delicious mulberries off our tree.

Delicious mulberries off our tree.

What would be your preference, awake before dawn or awake before noon?

I’ve grown up as a morning person so my preference would be awake before dawn. However, since being ill I no longer have the energy to be able to do that. My normal waking time is sometime between 8 and 9 am. Some days I may wake up earlier but if I get up earlier I would probably only make it until lunch time before needing to return to bed for the rest of the day.

Would you like to sleep in a human size nest in a tree or be snuggled in a burrowed spot underground?

For sleeping I’d prefer to be snuggled in a burrowed spot underground. It would be like a nice big hug, warm in winter and cool in summer insulated from the weather outside. During the day though, I’d love a human size nest to sit in and watch the world go by!

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up?

In the last week I’ve finally come out of my most recent major crash to a point where I can actually focus on work again. It’s been over a month since I last felt like I was actually being productive and useful when I attempted any work.

I’m grateful for the opportunity to spend time with my husband while he had leave over the Christmas/New Year break and for the support of those around me who act as mentors for me while I move forward on this quest of self employment and an overall simple, sustainable and meaningful life.

In the next week, I’m most looking forward to my appointment with my Pelvic Pain Specialist on Monday. It’s been 6 months since I’ve seen someone from their clinic and this time I get to see the main specialist there. I’m hoping to be able to get a bit more guidance on how to manage my symptoms given that all the medications recommended to me either don’t work or the one that did work for pain relief (it was amazing! Made me feel like I was floating on clouds. The only day in almost 3 years that I had almost 0 pain) set my asthma off.

I’m also hoping for clarification of what she thinks is the cause of the pain. Although I have been officially diagnosed with Pelvic Congestion Syndrome after a laparoscopy in 2013/14 (can’t remember exactly when) the other people I’ve seen at this clinic have suggested that it may still also be partly Adenomyosis or Endometriosis even though nothing was seen during the laparoscopy except varicose veins everywhere.

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?

Life with Chronic Illness – Pacing and Routine revisited

25 Aug 14
Megan
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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?

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

12 Aug 14
Megan
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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.

 

Dealing with trials of drugs and treatment options – Lyrica

29 Jul 14
Megan
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Over the last week or so I’ve been really struggling with the brain fog and fatigue. My doctor and I are trialing an increase in my Lyrica doses and so far I’ve seen little to no improvement in the pain levels (the reason for the Lyrica) and a massive increase in the brain fog/fatigue department.

 

Retrieved from Facebook

Retrieved from Facebook

I feel almost like I’ve taken a 6 month leap backwards in my mental capabilities!

It’s really hard to explain what it’s like to be on this sort of drug. My mother-in-law told me about someone in her support group who recently started Lyrica and I really liked her description… you can start off feeling fine, almost good, so you go about your day as normal but at some point you realise that you feel as if you’re high on drugs, you are completely out of it and unable to do anything properly… thanks to the fog I don’t think I’ve written that quite right but you get the gist of what was being explained.

Each and every day, multiple times a day, I’m stopping and asking myself what I’m doing. I feel like most days lately are just going by without me achieving much, like it was when I first fell ill.

Admittedly I am achieving more than I was back then, physically at least. I’m managing to keep up my (mostly) daily yoga, 3 times a week body weight exercises and daily walk or ride (which I’ve managed to increase to around 20 minutes a day).

Mentally though, I’m getting nowhere!

I have a uni assignment due next week and the fog is making it difficult to even understand what I’m reading in the weekly work, let alone managing to create my own 6 lesson unit of work on history for primary students. Luckily, my sister is over from Hong Kong at the moment and she’s studying similar subjects so I’ve had her helping me at least lay out the lessons so that it should be easy for me over the next week or so to get it into a structure suitable for uni. To be honest I’ve realised I’m not quite ready for study with deadlines yet, so when I finish this unit (hopefully passing) I’m just going to focus on the Certificate IV in Training and Assessment and not continue my degree for a little while.

Not being able to complete my uni work makes me question how ready I am to return to work. Although I’m fighting for a part time return to work soon, maybe I’m not ready. If this fog is not just the drug again, maybe I need to take longer to heal.

Every day I will be asking myself this:

From the last campaign I ran before getting ill in 2013.

From the last campaign I ran before getting ill in 2013.

My response is not always yes. Although I’d like it to be yes everyday, there a days where I’m struggling to even remember the order of my morning routine. On those days I feel like I’m travelling nowhere or maybe even backwards.

I know I can travel well, even with my illness, I just need to remind myself of my priorities and focus on those. I can be happy and fulfilled even with a life of pain and fog where most of my time is spent at home.

Next week when I see my doctor again I will need to have made a decision, is the fog/fatigue worth the minimal pain reduction the Lyrica is providing?

Right now my answer is NO.

If things have not improved by next week I will be asking to be taken off the Lyrica and, given that then I will be off all pharmaceutical drugs (except the Depo Provera for the Pelvic Congestion Syndrome), I will be looking more into natural and non-drug options for pain and energy management.

For me to feel comfortable returning to work, I need to be at a level where I can function – both physically and mentally – at a minimum of half of what my ability was before falling ill. At the 50% point I’d be comfortable with part time work which would hopefully assist in increasing that percentage for the mental functionality.

I’m beginning to feel like I’m rambling so I’m going to end this post here.

My questions to you today are:

Are you travelling well? Have you found that good point/balance point in your life?

If you ever tried Lyrica, what were your experiences with it?

Do you have any alternative treatment recommendations for pain and energy management?

Thank you for reading this post and don’t forget, you can head over to LiveKen to follow our journey to a simple, sustainable and meaningful life. I would love to share this journey with you as I’m sharing the journey with Chronic Illness here.

International ME/CFS/Fibromyalgia Awareness Day: A letter to my illness

12 May 14
Megan
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Today is International ME/CFS/Fibromyalgia Awareness Day. As mentioned in Friday’s This is M.E. post, today I’m joining in with Sally’s #May12BlogBomb by sharing a letter to my illness. I have decided to include the Pelvic Congestion Syndrome in today’s post as I don’t believe it has an awareness day of it’s own and it is part of my life.

To my constant companions – ME/CFS, Fibromyalgia and Pelvic Congestion Syndrome,

It’s now been over a year since the three of you decided to make yourself known in the most painful way I could imagine. At the time I didn’t know who you were or what your presence would mean to me and my life, but I’ve been learning a lot in the last 13 months.

Before you were here I had a very active, fulfilling life. I worked fulltime in a job I was finding exciting and meaningful, through it I felt I was actually making a difference to how people in the local community viewed and interacted with the environment. I was also a regular attender at my local gym and spent weekends being active with my husband, either hiking, walking or riding most weekends. My husband and I were planning a safari holiday to Africa, which would have been this November. I was going to go see the Gorillas in the wild.

But you’ve changed all of that! Between the three of you, you have taken away my ability to be active, to consistently think clearly and even to get the right words out of my mouth a lot of the time.

All three of you cause constant pain to my body. I am always aching and if I do too much, or eat the wrong thing that ache can turn into sharp stabbing pains or fierce burning. Most days I have to cope with at least one part of my body being numb with pins and needles.

I’m no longer able to lift heavy things or participate in any intense form of exercise for any length of time. In fact, I can only walk for 15 – 20 minutes at a time without the pain levels rising.

Since you came into my life I have been unable to work. Although my doctor believes I am now ready to return back to work part time (3 half days a week), I still struggle to do more than half an hour of any mental or physical activity before I need a break, and I definitely can’t drive long distances yet.

ME/CFS and Fibromyalgia, I believe you two are the cause of my incapacity to think and participate in mental activities for any length of time. The brain fog and extreme fatigue/exhaustion that you cause make it simply impossible for me to focus for any length of time. For a while there you took away my ability to read at all, but recently we seem to have come to a comprimise. As long as I don’t read for too long (less than half an hour at a time) I can now read, but I don’t always remember what I’ve read for very long afterwards.

Thanks to the medicines I’m on to try and allieviate your symptoms, I have constant nausea which interferes with my ability to eat properly. Some days I may be too nauseous to eat anything, others I may feel like I need to constantly eat to feel OK. Again, we seem to have come to a compromise, if I eat 6 smaller meals each day you keep the nausea and bloating to a minimum.

I know so far this letter has been a list of complaints, the negative things you have brought into my life, but I’m also thankful to you, my chronic illnesses. You have helped me view the world differently.

Thanks to you I’ve gotten back in touch with my spiritual/emotional side that has been supressed due to lack of time in my busy life before you came to visit. I have the time to do yoga (for 12 minutes) and meditate daily.

I’m able to see what is really important to me, my family and my ability to help others. You may have made it so that I’m incapable of doing what I previously did in my busy, active life but I have found other ways to connect and to help. Because of you I was able to write the story for the Foggy Frog and the Pain Gang picture book and associated campaign.

You have given me the experience and the time to develop new skills in writing, drawing, advocating and sewing.

I have learnt (or at least I’m learning) to pace myself and use my energy wisely. I spend more time on looking after my health and caring for those around me than I previously did. Staying positive isn’t always easy but it is something I aim to do by remembering the good things I’m now able to do that I didn’t do before, and by remembering that nothing lasts forever.

My doctors don’t seem to know very much about you so this is a journey we’re taking together. Sometimes I feel very alone on this path but I remember you are always there and so is my family. I just need to remember to keep fighting for my rights and for the opportunities there are to minimise your impact on my life.

You may have stalled our plans to travel and to start a family, but no matter what happens I will fight for these plans. To me having a family of my own is one of the most important things that could happen to me. I am willing to go through a period of even more pain from you, Fibromyalgia and Pelvic Congestion Syndrome, if it means I have a child of my own to love and to care for. This is one dream that I will never give up on!

So, although you have brought me constant pain, extreme fatigue and brain fog (as well as many, many other symptoms that just confuse my doctors), I am grateful that you have come into my life. I have learnt so much from this experience so far, and will continue to learn as time goes on. I will find a way to live a reasonably active and fulfilling life again, even with the three of you here with me.

Thank you to my constant companions –  ME/CFS, Fibromyalgia, and Pelvic Congestion Syndrome. You have made me strong.

Until next time,

Megan

What can Crowdfunding do for those of us with invisible illnesses?

11 Feb 14
Megan
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Source: Pintrest

Source: Pintrest

You may have noticed the last few weeks I’ve been hinting at the fact the Foggy Frog and the Pain Gang campaign was going to be getting busier in March. That’s because we’re taking the next step and officially launching with a crowdfunding campaign through Kickstarter.

We’re doing this because I’ve realised that I do have financial limitations and won’t be able to fund the publishing and distribution of the picture book by myself. Getting the book published is the first step in getting the message further out there.

What is crowdfunding?

I shared a post a few weeks ago that provided a basic explanation of what crowdfunding is and I feel that post and the info graphic below provide a reasonable understanding of the basic principles.

Source: Pintrest

Source: Pintrest

Basically, the version of crowdfunding we’ll be using is one where everyone who donates gets some form of reward.

How does this help those of us with invisible illnesses?

By getting the community involved in the project at this very early stage, not only will we see the book available sooner, we have a chance to demonstrate through rallying around this project that there is a need for education around this topic in the wider community. The more people who get involved at this early stage, the bigger the statement we can make and the further we can spread the word.

If enough people get involved we may even be able to get sets of the book into schools and libraries around the world so that invisible illnesses are discussed in classes from a very early age.

What’s in it for me?

Personally, I will get validation of my idea. Through seeing how many people support the project and are willing to pay for a copy of the book and other amazing rewards I’ve managed to source, I will begin to understand how big this project will actually be and I will be able to share that with my family, friends and all of you.

I have been, and will be, putting my into this project 100% to try to ensure it’ll be successful. This project seems to be consuming my life at the moment, and I apologise to those of you close to me. I promise that soon I will have other topics to talk about. 🙂

This is the manifesto I’m living by for the next few months (although I promise to put my health first):

Source: Pintrest

Source: Pintrest

 What’s in it for you?

If you join us at this early stage of the project, you’ll be able to have your say in which direction the project takes. You’ll also get recognition for your support and,  depending on your donation level, you’ll get copies of the book, a chance to be part of the publishing process, and one lucky supporter will get a beautiful handmade ukulele.

Source: Pintrest

Source: Pintrest

If you’re interested in being kept up to date so that you’re one of the first to hear about our campaign launch, please sign up for our newsletter.

I am really excited to be bringing this campaign to you and I would love for us all to work together to make this happen.

Would you like to join us in making this campaign happen? 

Can you think of other ways this project will benefit our community?

Foggy Frog Simple Logo

Life with Foggy Frog and the Pain Gang: Australian Pain Society share my story

09 Feb 14
Megan
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On Thursday this week, I was published on the Australian Pain Society’s blog.

The Australian Pain Society is a multidisciplinary body aiming to relieve pain and related suffering through leadership in clinical practice, education, research and public advocacy.

This is a new blog they have just set up so head over and check them out, they have lots of information and stories they will be putting up over the next few weeks. 

Life with Foggy Frog and the Pain Gang

For the past 9 months I’ve been living with chronic pain, brain fog and fatigue. Although fatigue doesn’t really begin to describe it; it’s more like having an elephant sitting on you making it hard to move your body and having your brain be complete mush.

To begin with I didn’t have any idea of how to deal with it; I spent my days collapsed on the couch unable to do anything. After searching for the right GP and doing tonnes of research I almost have a complete support team including my family, my GP, and an acupuncturist; I’m still looking for a good specialist to complete the team. With the support of this team I have begun to slowly learn how to manage my symptoms so that I can have some a positive life.

Read More Here