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The Label Problem: Balance and Self-Perception with Chronic Pain and Fatigue

This is an older post but still so relevant. As I have become even better and am able to let my guard down in some respects, I still have to tow the line and balance the cost vs benefit analysis. Recently, we went away for the weekend and the baby slept poorly (as in worse than his usual multiple wakes) and I was in a massive flare. It was interesting to think through whether going away was worth the feeling I ended up with (you know, profound fatigue, nausea, pain etc.).

It’s the age-old question of functionality vs symptoms. Are we willing to suffer the symptoms in order to do the thing?

balance and self-perception with chronic pain and fatigue

I have just read the blog post, Seeing Yourself as Healthy, by Danea Horn of Chronic Resilience. In it, she talks about self-balanceperception – about choosing to see herself as healthy and remembering all the things that bring us joy. And it got me thinking.

For years, I have waited for someone to truly understand what it is I deal with on a daily basis. I have also spent more years than not ignoring it and carrying on (because I had no label and no idea it was reasonable – or preferable – to go a little easier on myself).

For the last three years, I have acknowledged my illness and my limitations and worked to both learn about them and conquer them.

But there is a tricky balance here. You don’t want to dwell on your pain and fatigue (or whatever symptoms you deal with), you don’t want to stop doing things you want to do and you don’t want to be seen as the “sick” person. You do, however, want to know your boundaries.

I acknowledge and respect my boundaries as best as I can, because I have found that I can often overexert myself – and I then pay for it. As my only advocate, I have to do it. Because it can be hard for other people to grasp what it is to struggle through a day or, worse, to be stuck in bed in extreme pain, fatigue and panic.

Everything I do, I do to stay away from being unwell. I guess, because I look healthy and because I achieve so much, it is hard for someone (even someone who witnesses my everyday life) to grasp the fact that I could be one bad call away from a flare up. So when I compromise and stay out late, I am compromising my energy and my experience of wellness. Even if I am not in bed the next day, my pain could be worse, my fatigue will probably be increased – that day becomes a day that I am not living but merely coping.

So when I compromise and stay out late, I am compromising my energy and my experience of wellness.

On the flip side of that however, I do tend to protect myself a little too much. I appreciate it when my husband can remind me to do something I think may be a little too out on the cost/benefit scale – because, I can get it wrong. I can overestimate the cost and underestimate the benefit. But there needs to be recognition that I can’t stockpile energy and it takes more than one night to make up depleted energy levels.

So it comes back to a tricky balance. You need to acknowledge your illness/boundaries but you also need to try to learn where you can push back. This can be difficult with an unpredictable illness like Fibromyalgia and Chronic Fatigue, but when your pushing back includes achieving something you’re passionate about, it is so worth it. Then, maybe you’re not the “sick” person, but the “wise” person.

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Last Adventures

We embarked upon our last adventure before baby this weekend. We joined 10 friends in a beautiful beach front location, about two hours drive from our place, for one of their four night holiday. 

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From: www.dreamstime.com

It was the last time we would be able to join them for that sort of holiday as those holidays are not the type for a baby. As a pregnant woman I struggled! But it was fun. 

We also ventured over to visit some of my family, about 50 minutes further away from where we were. This will be the last time I see most of them until after baby. It was so lovely to have a family BBQ and spend time with my nana. My husband enjoyed the more in-depth meeting than the usual wedding catch ups that have previously passed. 

Baby is due in about nine weeks! It’s crazy how fast this time is going. We have prepared nowhere near as much as I’d like! I am counting down the last four weeks of work before my leave kicks in, as I am exhausted and have so much to do! 

After such a full on weekend, I am struggling today. But it was worth it! I do think that I am on the wind down now, though, no more late nights and long drives for me! 

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28 Weeks and a Wedding

The 28th week has ticked over! In fact, tomorrow I am 29 weeks! Time has started to blur past.

My wedding came and went just over a week ago, the day, like the preparation, whizzed by. It was a whole lot of heat, fatigue, fun and love. I was more focused on, and more excited about, the baby. I also didn’t think I was a wedding person. But it was the most beautiful day. There is nothing in the world like telling the love of your life that you will spend forever loving them in front of your friends and family.

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I have the most precious memories from this day. The first was walking down the aisle toward my love. He looked gorgeous and I just couldn’t believe I was there, getting to marry him.

The photo shoot was exhausting in the heat, but it was also a fun time. We got some beautiful shots. It was really fun to play model for a day!

Unfortunately I was well and truly out of energy by the time we arrived to the reception. After our entrance and the cutting of the cake, we had the speeches. Wow. I was particularly touched by my mother-in-law’s speech. My sister, father and brother-in-law gave great speeches also.

But the one that took my breath away (and nearly made me cry in public, from which I fear I wouldn’t have stopped being the exhausted, pregnant woman that I am) was my husband’s speech. I haven’t the words to describe how much I love him or how much I appreciated his precious words to me. I stole his notes for my memory box!

We have been told how much people enjoyed our wedding, there was a lot of dancing! So, the last hours of the wedding were characterized by some excellent dancing. Not mine, besides being tired, it was really hard to dance in the big, heavy dress! Our first dance didn’t go as practiced, as it was too hard to do the turns with the train. I am already planning an easier, shorter dress for our first anniversary so that we can recreate that dance properly – it was to Celine Dion’s If That’s What it Takes, sung by my brother! That was pretty special.

And then, all of a sudden, it was done. We are married! We are now making our home together, carrying on as usual and preparing for our baby to join us in the next 10-14 weeks!

I am supposed to be working and organizing a whole heap of things, but between the pain (hips, lower back, glutes, neck), the fatigue and the daydreaming of what my baby will be like, I haven’t done as much as I’d like yet.

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

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Five Ways I Cope With Fibromyalgia: AKA Lifestyle Choices to Live Well

We all know the recommended steps for being well- eat healthily, exercise moderately and get plenty of sleep. I believe that people with Fibromyalgia need to adhere to the healthy living guidelines, augmented to their ability level, of course. But what happens if no matter what you do, you are exhausted and sore? There’s no escaping it, you have to do the work.

Here’s the five lifestyle choices I make daily to cope with Fibromyalgia and chronic fatigue:

1.       Healthy eating

Food is fuel, right? Everyone should eat healthily with a diet full of fresh fruit and vegetables and rich in whole grains and protein. When you are battling extreme fatigue and travelling muscle aches, what you eat can be of great help.

In my worst flair ups, my food diary used to become a love song to carbohydrates. I subconsciously craved fuel that my body could turn into energy; unfortunately, all those carbohydrates created the opposite effect. My already exhausted system was battling its way through the simple and complex carbohydrates I was throwing at it every few hours – it had no time to create energy. It took a few days of concentrated effort, but once I replaced a few of these servings with other foods, I began to feel the effects.

For me, eating a moderate diet rich in fruit and vegetables is a good start. Some people swear by Paleo, or Keto or gluten free or some such diet – it’s all worth a try.

2.       Exercise

Unless your doctor forbids it due to a medical condition, you should be exercising. A person with Fibromyalgia will work at a lower intensity and for a shorter period, but they should still exercise.

The amount of energy I have fluctuates, depending on many things, but I always go for my walk with my dog. Sometimes it is only around a 15-minute block, other times I will go for a course with a decent hill or will walk for a little longer. I have found 25-30 minutes to be ideal for me. I am always treading the fine line between proper muscle exhaustion and pain. This can be hard to monitor with constantly changing goalposts like fatigue and pain levels, but after two years, I have worked up to my current level.

Pilates is my favourite form of resistance exercise. I have done it faithfully for about ten years. Sometimes I operate at a beginner level and other times I can advance the exercises. When I was starting again after a bout of extreme pain, my physiotherapist created a 20-minute programme for me to follow. With my experience, I was able to advance the exercises as my energy levels allowed.

I have found it very important to keep the strength in my muscles with gentle activation. There is a strong correlation between less exercise and more pain.

lifestyle choices I make daily to live well with fibromyalgia

3.       A compassionate, knowledgeable physical practitioner

My physiotherapist is a valuable component of my healthy life. Someone you trust, who knows about Fibromyalgia and can bring about lasting changes with their treatments is vital to coping with long-term pain and fatigue. Someone who can come alongside you and take the burden of your body, even if only for half an hour is great for physical and emotional health.

My physiotherapist is the only person I can speak candidly to about what I have been coping with for the last 7-14 days (depending on how long I can stretch out the periods between treatment). After trying many of the different types of therapies, I have found acupuncture to be (one of) the least invasive and longest-lasting treatment.

Other posts you might like
Why I’m Treating the Fibromyalgia as Naturally as Possible
My Daily Log, Why I Track Fibromyalgia Symptoms
Free Printables from Melissa vs Fibromyalgia Book

4.       Sleep and rest

Sleep is my hardest battle. A full night’s sleep is the best way to cope with life. I try to go to bed around the same time every night and have a set routine that involves getting ready and reading before I switch off the light. I also try to get up around the same time every day. This helps, but I will not always sleep through the night, I will not always fall asleep straight away and I will often wake up at 4am (or every hour or two) with an incredibly stiff and sore neck. Since I began Low Dose Naltrexone in 2017, I have finally managed to sleep in blocks of more than an hour! I don’t sleep through the night, but I do sleep much better and this has flow on effects.

In order to cope on days when the kids have had me up in the night or the fatigue is just worse, meditation is a go-to. I can’t nap, so meditation is a way to get decent rest when I need it.

5.       A plan for the “hard” days

These are inevitable. Everybody gets sick from time to time. A person with Fibromyalgia will have some harder days. I have found a written list with suggestions for what to do on one of these days to be useful for pulling me out of the downward spiral of panic that accompanies intense pain.

Things like:

  • Specific stretches for my neck (tightness in my neck often causes headaches, nausea, dizziness and extreme fatigue)
  • Things I can do in descending order of ability (a gentle walk, gentle stretches, watch a DVD, read, lie down with an audio book on, lie down and do nothing else)
  • A reminder of the pain relief options I have at my disposal (wheat pack, icepack, heat cream, Ibuprofen, prescribed pain killers) – you would be surprised at how often I forget these things exist in the grips of serious pain.

All of these ways for coping should be underpinned by hope. Hope that your “hard” days will occur less often. And hope that you will be able to compile a life that is heading towards wellness, rather than just away from sickness. This is what I have experienced over the past two years as I have found more to help, particularly the low dose naltrexone, and it is what I hope for you too.

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24 Weeks

Time is disappearing at an alarming rate. I am just three weeks out from the third trimester and from what I have read, I don’t want to get there too quickly!

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My little boy has become more and more active as the weeks go by. My little tenant loves to let me know he is there, especially when I have just lay down or started attempting to meditate after yoga.

As much as it has made me more in awe of this process I am going through, and reinforced why I am doing it, his little movements have also helped him start his bond with his father. My love likes to sit or lie with a hand or his head on my belly when we are relaxing together in the evening. It is the most amazing thing to see his reaction when baby prods at him.

Pregnancy is simultaneously tiring, painful, scary, awe-inspiring and ultimately bringing me around to a fuller sense of the world and my part in it. 

When I see tiny baby clothes I get such a sense of excitement for when I can snuggle with my little boy! When I see other babies, I get a tingling sense of joy for the fact that I will soon have one of these!

I have had some of those excruciating calf cramps that have woken me up in the early hours of the morning, the first one panicked me and I was practically hyperventilating as I tried to remember how to relieve it!

I have been super hungry. Super tired. Struggling to sleep comfortably for more than one or two hours at a time. So I am trying to actively remind myself to take it easy and rest more frequently. This is hard to do when I am getting married in three weeks, but I am trying!

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

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19 Weeks…It’s a Boy!

I fell down.

One Sunday morning, a few weeks ago, I woke up to pain in my left side and lower back. As the day wore on it became intense. In tears, on the phone to my midwife, I was told it was probably a pulled muscle. I took a Codeine and lay on the couch, vaguely watching TV.

After a painful physio visit the next afternoon, it was confirmed, I had pulled muscles in my lower back and left hip, which in turn had tripped my very tight glute muscles.

Since then, I have recovered slowly, but in dealing with the extra pain and resulting fatigue, I have fallen down. I haven’t been coping. Between the pregnancy and those injuries, sleeping is very difficult. I can only walk the dog for around 15-25 minutes at a time and have had to give up my mat Pilates routine.

In addition to this, I have been planning my wedding, for February 2014.

So I am planning a wedding, working, gestating, attempting to be healthy and am desperately, soul-achingly exhausted – and no one seems to get it.

Meanwhile, my baby has been growing furiously! I felt my little flutter ball the other day for the first time and then saw him yesterday in the anatomy scan.

Yes, we have been blessed with a baby boy! Feeling and seeing him makes it feel worth it! It is so amazing. I can’t wait to meet him.

I just wish I could focus all of my limited energy on preparing for him. He is my priority.

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

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Week 14

My neck has been uncomfortable for my whole pregnancy (yes, 14.5 weeks of 5-7/10 pain every day). So on Friday I went for a massage, unfortunately they thought that due to my pregnancy they shouldn’t use the usual pressure. Needless to say, I went away with almost as tight shoulders and neck as I went with. With chronic pain and fatigue, caused by chronic tightness in these muscles that I use frequently (especially for work), the only method to release the muscle (and therefore gain some respite) is deep tissue stimulation.

Due to my increasing pain over the weekend, last night I slept very poorly. I do have an appointment with my physio on Wednesday and I am counting down to it. Also, I am counting down to the end of the pregnancy, when I can have something stronger than paracetamol again!

I confess, I had been hoping to keep the maternity clothes at bay with belly bands (that cover my open pants button and keep my pants up). Most of the time, I am more bloated than pregnant, so I prefer to have nothing around my waist. It feels rather early to contemplate maternity clothes though…I am so pleased that I mostly work from home, so I can sit here with my pants wide open or live in tunic tops.

In unbearably cute news, I bought my first item that wasn’t a big-ticket, budgeted one…a tiny hat! It is mint green with a knot at the top, I can’t believe my baby is going to fit into that little thing.

We met the midwife this morning and heard the heartbeat. Due to belated shifts in timings for the scan (by the radiology company), my partner hadn’t made the scan appointment, therefore he hadn’t heard baby’s heart beat yet. That tiny, rhythmic beating, engenders such hope, such happiness, such contentment. I was so glad to share that with him. We are now on the countdown to the anatomy scan in four or five weeks!

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

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So Much Has Happened!

The last week and a half have been massive! I was awed by seeing my baby by my 12 week scan on the Thursday before last. Then on the Saturday, as a birthday present from my love, we went over to Kawau Island (off Matakana, North of New Zealand). The water was deliciously blue as we were shown around the edges of the island by boat, before being dropped off by the Governor’s Mansion.

We walked through a track in forest land to a remote beach…where my love proposed!

It was the most beautiful, romantic proposal I could have imagined. I was blown away. Of course, I said yes!

We then spent the week touring the upper parts of the North Island, as I had never been past Matakana previously. It was beautiful. A whole week, mostly alone with my love, to be calm and just enjoy. We experienced the richness of New Zealand’s history in Russell, at Waitangi and in various historical properties around the areas we traveled.

In the middle of our trip, the pregnancy clock ticked over to 13 weeks. Over the past week, I have noticed an improvement in my fatigue. I am still tired, but then I have chronic fatigue so that’s usual, but I am no longer desperately tired from the moment I wake. I no longer crave a nap at 10am or in the afternoon. I am back to afternoon rests (with a book or an episode of a TV series) and I can read before bedtime again! My eating has also settled down. I am still hungry regularly, but I am closer to my usual eating habits, which is great as I have put on a bit too much weight with the fatigue, pain and nausea.

So it is all very exciting!

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12 Weeks & a Beautiful Baby

My tiny baby is gorgeous! I saw baby in my 12 weeks scan today. It was a very moving experience. Baby is healthy and on track for growth. He/she was sleeping when we began with a little hand raised above their head. Once he/she had been prodded a bit we got to see some movement. It was surreal to see baby moving, but not be able to feel it. It was truly a wonderful experience.

Unfortunately, due to the clinic cancelling my scan at the last minute two days ago and having to take the only time available (midday) this week, my partner couldn’t attend. This is very sad because, as a dad it is one of the few times he can really be involved at this stage. But we have a picture:

Now that I am at week 12, I feel like I can finally buy stuff. I have already researched all of the big, essential items and there are big differences in price! In an online store there are cots with mattresses for around $200, in a store the other day the prices seemed to start at $500 for just the cot! So I have to be wise and check the price (and quality)!

We have decided to go with a convertible car seat, rather than an infant capsule, because it will last the baby’s whole career in a car seat and then be useful for any future babies, it is a worthy investment. Also, having the noodle arms that I have, carrying the infant capsules is rather difficult for me!

As we leave the first trimester, and come into the second, I am hoping the fatigue will recede a little and that the hunger will abate to a more manageable level. As it is I can only fit one pair of my pants!

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

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Emotions and Mood

I have always prided myself on my effort to keep a level head, despite extreme fatigue and pain and the associated barrage of emotions that come from dealing with that.

But at the moment, I am a mess! I can get really sad, for no real reason and I can’t bring my head into it to tell myself it is just a moment and it will pass.

I prefer to be positive, especially when talking about my fibro/chronic fatigue. Positive but real. My neck has really amped it up, the pain levels have hovered around 5-6/10 almost every day. Sometimes they shoot up to 7-8/10 and only being allowed Panadol is really hard!

In just four days I get my first week-long holiday since Christmas last year! So I am counting down!