Treatment for Low Testosterone in Women…

I hope everyone has had a wonderful Easter weekend.

We spent it in the bush camping helping friends set a rogaine for later this year. Most days I hung around the campsite, with a short walk with T during the day while the others were on long hikes setting check points. I did join them on Sunday when half the points were only short walks from the car, this was another big day like the rogaine the previous weekend but I did make sure that I rested a lot as well by staying at the car and meditating while the others went on longer walks.

Over the weekend I had a lot of time to think and reflect on how things have been going lately.

I’m still working on finding balance in my life but have realised that having a set routine doesn’t work for me. Instead pacing, and continually reassessing and adjusting to create balance over a longer time period instead of trying to balance activity within any given day.

I’m feeling very positive about my progress. As I mentioned last week, I’ve had a few full on days lately (think double my daily average step count without many rest breaks) but haven’t had any major crashes. I have had a few single crash days but have been back to ‘bad’ by the next day.

I’m attributing at least part of this improvement to the nortriptyline I started taking about a month ago, and I’m hopeful that the testosterone cream I started on the weekend will improve things further.

I’ve started the testosterone because my free (available) testosterone levels in my blood stream were almost non-existent. This could explain several of my symptoms including the fatigue, sleep issues and an increased risk of bone loss (I’ve been diagnosed with Osteopenia – the step before Osteoporosis and the doctors haven’t found a reason for the continued bone loss after stopping the Depo Provera over a year ago). It can also cause low libido.

There are side effects I have to be aware of including increased hair growth in the area I apply the cream, lowering of my voice, and acne. Because the side effects can take a while to appear and too much testosterone can have even greater impacts on my health, I need to have a follow up blood test in 3 weeks to check whether the dosage is correct and see if my blood levels of free testosterone are back in the mid-high normal range. The benefits of the testosterone cream (in particular increased energy) should also become visible in the next 2-3 weeks.

Have you ever had your hormone levels tested?

If you’re female, have you ever tried hormonal replacement (in particular testosterone)?

Pacing: How to add new activities

Over the weekend, in between the many social events we had on, we picked up a secondhand electric bike for me to use. This means I can now add riding into my exercise regime, but it also means I need to be aware of how I’m coping and adjust my activity levels to fit this in.

The concept of Pacing is one of the key mechanisms I have in place for managing my chronic illnesses. It’s basically a technique of managing activity levels to maintain a balance of rest and activity that keeps you below your current threshold for exertion.

To date, my pacing has been focused quite strongly on my step count and time spent doing daily activities related to work, social life, and household chores. I have found a balance of mental and physical activity which has allowed me to avoid many potential crashes or increases in pain and fatigue levels.

Since starting the Nortriptyline, I’ve found that I’ve been able to do more physically without increasing my symptoms or crashing for multiple days at a time. My brain is slightly more foggy than it’s been in the past but not as bad as it was on the Cymbalta which caused multiple side effects that impacted my ability to work and participate in activities I wanted to do.

Some of the things I’m considering as I once again adjust my lifestyle to add in and modify my activity levels are:

  • What are my long term goals and priorities? As you’d be aware, my current focus is strongly on getting to the point where we can start a family. I’m mostly happy with my current levels of mental activity (work, reading, etc) but want to increase my physical capability and my social life. Many of the social activities I miss participating in had some physical aspect to them; things like participating in rogaine events with my husband and going for walks and rides together. To do these things I need to focus on my health more and increasing my ability to get around independently without relying on the car all the time.
  • What is my current baseline for each activity? The major thing about pacing is that it takes into account your current abilities and can lead to increases OR decreases in activity level over time. The first step in pacing is to set a baseline and aim for 10-20% lower than that as your initial target. When adding in new activities it is important to make room for them, so you would lower your targets for other activities to have the energy to do the new one.
  • What am I already doing and what can I adjust? Earlier this month I made the decision to drop all my volunteer work for at least the month of March. This has opened up space for me to consider new activities and adjust my other activities to better suit my current needs. To add in riding I’m also stopping any increases in step count and instead focussing on maintaining my current average, my yoga has dropped back to just basic stretches throughout the day, and I’m not taking on any additional work for at least the rest of this financial year.

Once you’ve considered your options and worked out if it’s feasible (and the best use of your limited energy) to add in the new activity, it’s time to create a plan. The plan should always be focused on your energy levels and how you’re coping. This is not a graded exercise program where you increase activity levels and do them at set intervals and in set amounts independent of how you’re feeling!

My plan for adding Bike Riding into my Pacing…

I had my first ride yesterday morning to test the waters. I rode my bike a total of just over 1 km (just around the deadend streets around my house). At the end of the ride I was very sore and quite exhausted but I was already improving by the end of the day and I haven’t had a major decrease in energy levels today (I normally get PEM the day after I overdo anything that lasts for 24-48 hours). To me this indicates that this is a good starting level.

Based on the outcomes of my test ride, my current plan is to do the same short ride every 2-3 days for 2-4 weeks. If this doesn’t lead to any PEM or major crashes, I will then increase the distance by no more than 10% and maintain that level for a further 2-4 weeks. This cycle will be continued until I reach a point that does cause PEM or a major crash, at which point I’ll decrease by 10% and maintain for at least a month before trying any further increases.

At the beginning of April I see my exercise physio and I’ll go through this plan with her. There may be adjustments based on her input.

A quick No Buy Challenge Update: We’ve reached week 15 and the 3/4 mark of the challenge. In the past week I’ve purchased my electric bike (on the approved purchases list) and a duplo set for when our friend’s children come to visit (also approved – not for me and something that has been considered for the last 2 years).

Share Your World – Week 7

Jumping straight in today so here we go…

Share Your World – Week 7

What are you a “natural” at doing? 

I’m a natural at engaging with babies/younger children. When they’re really young, I can usually get them to settle in my arms. Older, they seem to be attracted to me and want me to participate in their adventures. I’m enjoying spending more time with my friends children these days and I really can’t wait until we’re ready to try for our own.

Would you prefer a one floor house or multiple levels?

Definitely one floor. Our current house has only one step down across the middle of the house but even that means I can’t just put Mr Vacuum on to run around the whole house… He just focuses on the bottom floor (kitchen, family room) most the time.

Mr Vacuum resting after cleaning the floor :-)
Mr Vacuum resting after cleaning the floor 🙂

I wouldn’t want to drag washing up and down stairs and everything is just so much easier on one level.

What was your favorite subject in school?

My favourite subject at school was music. I participated in school musicals and other events. It was a great break from the more serious maths, english and science I focused on all the way through to the end of year 12.

At university, I focused on subjects related to the environment and sustainability.

Complete this sentence: If only the rain.. came regularly year round. It would save me so much energy if the rain came regularly enough that I didn’t have to worry about watering 🙂

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

I’m grateful for the time I got to spend with my friends and their children.

In the next week I’m looking forward to catching up on some much needed work (supposing this relief from extreme fog stays – I can focus enough to do a little work again now).

A simple wardrobe with chronic illness

Another week down in the No Buy Challenge and another week of sticking to the goals. I’ve decided that instead of focusing my posts on the challenge each week (I will if there’s anything to update you on) I’d start doing some of the other posts I’ve been planning with just a short update at the beginning for the challenge.

So, as promised in earlier posts, today I’m focusing on my wardrobe.

Over the last few years I’ve become increasingly interested in reducing ‘clutter’ in our house. With limited energy, my ability to maintain the house to an ‘acceptable’ standard of cleanliness had dropped. All too often there were items lying over every conceivable surface in the house, washing piling up (dirty and clean) and dishes in the sink.

As part of my year of ‘Enough‘ last year, I spent a considerable amount of time removing a lot of the things and stuff that had built up but wasn’t actually needed, useful or loved. I have focused mainly on my own things, hoping to lead by example for E so my wardrobe was one area that got regular attention and I’m quite happy with the result.

There are many, many posts out there about how to create your own minimalist wardrobe, check out:

This is how I’ve modified the guidelines I read to suit my lifestyle and preferences.

An initial culling

When I first began my wardrobe clean out I pulled everything out of the cupboard and tried it all on with Janelle (my trusted friend) to assess what I liked and actually fit well and looked good. Anything that didn’t meet any of these criteria either got donated or thrown out depending on the state they were in.

Chose a colour scheme

I chose two main neutral colours – black and grey (I do still have a few white and brown items but mostly black and grey) – and two spectrums of accent colours blue/green and pink/purple. Anything that didn’t fit these colour schemes were donated, apart from my orange coat (A honeymoon purchase and my favourite winter coat).

Turned my coat hangers backwards

Last year I turned all my coat hangers around and only flipped them when I wore an item, anything not worn at the end of the year was donated. I found that all my short sleeved shirts are now gone, I tend to wear blouse style tops if I wear my suits, and I only have one long sleeved shirt.

Thanks to this process I now have room to hang everything, including jumpers, t-shirts and bottoms (were folded last year) so I’ve turned them all around again this year so I can assess how many of these items are actually worn throughout the year.

Pay attention to how I feel in each item

Throughout the year I donated several more dresses because they just weren’t comfortable, either they were too tight or they had zippers/buttons on them that were just not comfortable against my overly sensitive skin (a symptom of my Fibromyalgia).

Pay attention to what I wear most

A lot of the guides for minimalist wardrobes recommend X number of tops, X pants, X dresses, etc. This idea didn’t work for me.

I’ve found that because my tummy can (and does) bloat daily – going from almost flat to looking 5 months pregnant by the end of the day – I tend to wear dresses more often than any other item of clothing. I hardly ever wear skirts, jeans or pants any more – anything with a waist band that isn’t stretchy really.

As a result I only have one skirt, one pair of jeans (maternity jeans), two pairs of shorts (one stretch cotton), a pair of maternity leggings (worn almost daily in winter). In comparison, I have 9 dresses.

I also get really cold quickly so I have more items that I can layer such as cardigans, jackets, etc.

From 2 drawers + hanging to just hanging...
From 2 drawers + hanging to one row of hanging (shirts in foreground are E’s)

 

This wardrobe suits my life with chronic pain, limited energy, and daily fluctuations in body shape (bloating).

Maintain

To avoid a recurrence of wardrobe ‘clutter’ I’ve established some guidelines to maintain my wardrobe:

  • One in one out (for every new item that comes in an old item needs to leave the wardrobe)
  • Stick to colour scheme (any new items need to fit with my colour scheme)
  • Natural fibres (no wool) – my preference is for cotton or bamboo, I’m allergic to wool so none of that
  • Pockets! (Over half my dresses now have pockets and I’ve made a decision that any new dresses need to have them, this helps dramatically with reducing what comes in because there aren’t that many out there that do)

What items of clothing do you find yourself drawn to most days? Do you think you could live with a minimalist wardrobe?

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

 

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?

And the weather changes again…

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?

On Routine and Pacing

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?

ME/CFS Primer for Clinical Practitioners (2014 revision)

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 so I have begun doing more research into what is out there and what I should be doing.

The other week one of my friends, who also suffers from ME/CFS sent me a link to the newest 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?

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

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. 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

Physical Friday: 3 key steps to surviving a busy week with Myalgic Encephalomyelitis and Fibromyalgia

So… it’s Friday morning here, and the Kickstarter campaign for Foggy Frog and the Pain Gang is now in it’s 6th day and 25% funded. If you haven’t checked it out already, please head over and watch the video to understand what we are trying to achieve.

This week has been the busiest week I’ve had in over 8 months. Today is the first day in a week that I don’t actually have anything ‘planned’ with a set time I have to do it. I do want to catch up on the washing and do a few other littler chores around the house, but I don’t need to go to an appointment or meet up with anyone outside. Surprisingly, although I’m fighting with Foggy Frog to stay focussed on what I’m doing and fighting with my eyelids to stay open, I’m not actually feeling as bad as I thought I would today.

It’s Physical Friday today, so I thought I’d share with you the steps I took this week that I think may have helped me survive such a busy week without a full on crash (touch wood).

(c) Megan S, December 2013
(c) Megan S, December 2013

3 Steps I took to survive my busy week

1. Plan in Advance

I knew in advance that this week was going to be extremely hectic and possibly even stressful so when booking the appointments I tried to space them out over the week and made sure I had time to rest both before and after every appointment.

To keep the impact of the Foggy Frog campaign down as low as possible I’d planned in advance how I was going to launch it. I asked friends to prepare the food, I pre-wrote all the questions for the online launch, and I prepared and scheduled emails to go out on launch day. Without having done this the launch would have been a lot more stressful for me and would have probably caused a crash on its own without adding the rest of the week’s activities.

I also had my first late night class (a 3 hour class starting at 6pm) for the illustrating children’s picture books course. Although I had no way of knowing how I was going to cope with this class, I had made plans for E to be ready to pick me up at any stage if it got too much and I made sure the tutor knew that if I left early it wasn’t that I didn’t want to be there, it was that I couldn’t last any longer. (Luckily it actually finished slightly early and I made it to the end).

2. Be Gentle on Yourself

There were multiple times during the week when I started to feel that it was all getting a bit too much and I wasn’t going to cope. At these points in time I made myself stop whatever I was doing, sit or lie down, close my eyes and just breath for a while. This technique seemed to work well as ‘mini breaks’ throughout the days when there was no way I was going to get my normal rest.

I also prepared mentally and let myself know that it was OK if I couldn’t get everything done. I gave myself permission to leave things early, or cancel appointments, and even though I didn’t need to do this in the end having the permission removed the additional stressors from my days.

3. Take Regular Breaks

This was a big one, and I discussed in more detail on Wednesday how I was planning to do this. Finding time for myself and just relaxing was probably key to reducing the impact of this week on my health and wellbeing. I’ve had 3 baths this week, done several short meditations, and taken very short breaks just to breath as I outlined above. The baths all used Epsom salts which increase my magnesium levels and reduce cramping, so they were extremely beneficial on the nights I was feeling over it all. The other activities just gave me mental space to step back and assess where I was at thus avoiding too much stress and discomfort.

These three steps have been vital to me this week and I will keep on using them during the rest of the Kickstarter campaign. We have just over 21 days to go and $5,600 still to raise. I know that we will make it because I know how important this book is for our community.

Everyone I have spoken to who suffer from any of the invisible illnesses (Fibromyalgia, ME/cfs, MS, Lupus, etc) all have the same story to tell… Lack of awareness and understanding (and even misunderstanding) in the general community about what it’s like to live with these invisible illnesses. Foggy Frog is the first step in providing awareness and understanding to the wider community on what this is like.

Do you have any other steps you would add for surviving a busy week?

Have you found you can maintain a higher level of activity for an extended period of time without crashing?

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Please get behind Foggy Frog and the Pain Gang. Add your voice to ours in letting it be known that we want to be heard. A donation of just $1 will add your name to our list and the more people we get working together, the more likely it is that the general population will stand up and take notice. Visit http://bit.ly/FoggyFrog and pledge your support today.