Fibro Mama Interviews: Natalie from Surviving Lifes Hurdles

As we well know, our experience of chronic illness differs greatly. In order to shed some light on how other chronically ill parents do it I started the Fibro Mama Interviews series. Our first interview was with Brandi from Being Fibro Mom and our second interview is with the lovely Natalie from Surviving Lifes Hurdles.

Please give a brief introduction to yourselfNatalie- Surviving Lifes Hurdles.png

Hi, I’m Natalie, I’m 32 and I live in England with my partner and lovely 3 year old son who both help to keep me going whenever times get tough!

Since being diagnosed with MS 2 years ago my life has changed completely and I have so much more to deal with every single day.

I still love being a mum though and in many ways being chronically ill has made me a better parent than I was.  I certainly appreciate the little things more and I don’t sweat the small stuff now either!

I write a blog over at www.survivinglifeshurdles.com and you can also find me on;

Facebook

Twitter

Please stop by and say hi!

What are your diagnoses?

I have Relapsing Multiple Sclerosis, which I was diagnosed with just over 2 years ago.

How many children do you have, what are their ages?

I have one little boy who is 3.

Were you diagnosed when you were pregnant?

No, I wasn’t diagnosed until my son was 11 months old when I had a big relapse.  I did have MS when I was pregnant (although much milder at that point) but I didn’t realise it! I struggled with juggling fatigue with a demanding full time job during the 1st and 3rd trimesters.

What were your best coping mechanisms?

When I struggled with fatigue I used to rest as much as possible and break down tasks into smaller chunks.  I tried not to get stressed out about what I couldn’t do and at times work had to take a hit.

How long did you nurse for and what were your best coping mechanisms?

I stopped nursing when my son was 6 months old, so this was before my diagnosis but getting up in the night to feed certainly didn’t help my fatigue.  In the day, between feeds, I tried to rest as much as possible but also made sure I went out for a walk regularly for some exercise and a bit of fresh air.

How did you find the first year?

I enjoyed my maternity leave but found returning to a demanding full time job when my son was 6 months old so much tougher than I’d imagined.  My fatigue and brain fog steadily increased until I had a major relapse when he was 11 months old where I was admitted to hospital for a week for tests which eventually resulted in my MS diagnosis.

Following my relapse I struggled with severe fatigue, brain fog, balance and coordination issues to name a few.  I’d instantly gone from being a capable, working mother to being someone who had an incurable/progressive illness, was unable to work, depended on others and who needed help looking after her son for any long stretches of time due to fatigue.  It was a terrifying and confusing time and I struggled to accept my diagnosis initially.  I was scared for my future and what it would mean for my family.

Based on my own experiences, my tips for coping in the first year as a parent with a chronic illness would be;

  • Get as much help as you can; from family, friends, charities, medical professionals, paid help etc, whatever you can manage.  Leave your pride at the door and accept as much help as possible.  Parenting with a chronic illness is hard enough without trying to do it all!
  • Don’t be hard on yourself for what you can’t do.  If you don’t have the energy for loads of baby classes or you regularly have to take time out for yourself due to your illness it doesn’t matter.  Your baby isn’t missing out and what you struggle to provide in one area you will certainly make up for in another!
  • Look after your health.  It goes against all of your instincts to put yourself first when you have a child but when it comes to your health sometimes you just have to.  Accept that your health needs have to be met too otherwise you won’t be in a fit state to be the parent you want to be.
  • Don’t sweat the small stuff.  Being ill puts into perspective what’s truly important in life and what isn’t so use this to your advantage and leave getting wrapped up in pointless stress and over-the-top worrying to other first-time parents and enjoy the moment!

Knowing what you know now, what advice would you give to parents with chronic illness who are, or want to get pregnant?

Find out as much information as you can before you become pregnant.  Get advice from medical professionals about any potential complications due to your illness and whether you will need to stop any medication you are taking etc.  Also join a few Facebook groups and read some blogs of other chronically ill parents for the valuable real-life experiences and support networks they can provide.

Preparation is key.  All those sleepless nights with a newborn are hard enough without a chronic illness so it’s a good idea to get as organised as possible before your baby arrives.  Declutter to make room for all your new baby equipment and get everything you will need in the early days set up well in advance.  Stock your cupboards with loads of healthy and easy-to-grab snacks and batch cook a load of meals to freeze ahead too.

Believe in yourself.  Yes, parenting with a chronic illness will be tough and there won’t be many people who will understand but you will find a way to make it work.  Listen to your body, know your own mind and have confidence in the fact that you will love your child with every ounce of your being.  No chronic illness can ever take that away from you!

What resources would you recommend to support parents with chronic illness)

I know it’s very specific to both MS and the UK but for me personally I would have to say the  muMS UK Facebook group.  It’s great for finding out everything I need to know about parenting with MS and it’s a really friendly and light-hearted group.

surviving life hurdles


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Move Every Day and Some Neck and Back Pain Yoga Links

Given that I have a lot going on between two tiny children, a shift-working husband, starting part-time work again soon, living with a chronic illness and writing about said illness – I don’t have a lot of time. Long walks, one hour Pilates and yoga routines and gym sessions are well in my past, like the distant past. Prior to Noah I had worked up to 20 minutes of Pilates and 30 minutes of walking at a time. Prior to Wyatt I had worked up to 30 minutes of both at a time. Since Wyatt I have had little energy and even less time. But movement is so important that I must prioritise it if I hope to be well.
So I try to move every day.
I have written about the adaptability of yoga – and that I love that about it – I can use yoga whatever my physical state. Sometimes it’s one pose. Other times it’s a full sun salutation series. There’s also chair yoga, half sun salutations and far more than I’ve ever delved into.
As I go into this very busy 2018, I am making a commitment to myself to move every day.

Here’s an example of how I wove yoga into my day yesterday:

  • Half sun salutations before getting dressed
  • Forward bend while waiting for baby to drink his bottle before his nap
  • Yoga Nidra meditation while baby was napping
  • Knees into the chest pose just before bed to relieve my lower back
Yoga may not be your cup of tea, and that’s OK  I’d encourage you to set a goal of movement and stick to it. In order to do that you must like your chosen movement. There are a ton of them. Walking, tai chi, Pilates, swimming, aqua jogging, weight lifting…the list is long.
yoga for fibromyalgia with links

My free PDF report about Yoga for Fibromyalgia (benefits, research, how I use it plus more links) is available in my free resources page. Sign up here to access it.

I did some research into some good poses for neck and back release and strengthening because this is really an area of issue for me, here’s what I found:

10 Yoga Poses for Neck Pain and Spondylosis – That Changed my Life – the author includes sun saluations! And knee to chest post!

Here are some oldies but goodies that I’ve shared before:

10 Chair Yoga Poses for Home Practice – chair forward bend is delicious!

Bonus if you’re travelling soon!

How to do Yoga on a Plane -even just seated cat and cow pose will be nice!

Bonus if you want to build some strength while you’re at it:

 

I hope there are some things here to get you started. I’ll post updates on my Twitter @thefibromama of how my move every day challenge goes. Feel free to post yours! #moveeveryday

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Melissa vs Fibromyalgia: As Close to a Roadmap as I can Give You

My book Melissa vs Fibromyalgia: My journey Fighting Chronic Pain, Chronic Fatigue and Insomnia is available for preorder on Amazon now! It’s release date is 29 January 2018.

Melissa vs Fibromyalgia book cover

This is what I wish the doctor had pressed into my hands when I was given, at last, a reason (or as close as I can get) for the pain, fatigue and insomnia I had been fighting for nearly 10 years already.

Who wouldn’t want a road map that lays out the specific steps to take to reduce pain, increase energy and generally limit the misery of not knowing?

I can’t provide a finely detailed road map tailored to you, but I have done the next best thing – I wrote up my experience combined with the research.

What’s in it?

I share the key things that help me and what the research says about these things so that you have somewhere to start. I have gone through many books, articles and pieces of research. I’ve done numerous experiments on myself – from figuring out my ideal walk length to trying low dose naltrexone

Nothing I’ve tried has severe side effects. I do share my experience with amitriptyline, an older tricyclic antidepressant that can help with sedation (to fall asleep), pain and headaches. This has several potential side effects, mostly mitigated for me by the low dosage, that means the cost/benefit ratio doesn’t work for many. The chances of it working, of the effects not wearing off and potential side effects make it a tricky option. I’ve always said I am lucky that the locum GP – who I saw once, saw my history of insomnia and put me on it – gave it to me prior to my being able to research, because I’d probably not have tried it.

Other than the low dose naltrexone and amitriptyline, the things I do are generally low in the side effect profile and self-controlled.

Self-efficacy is vital in managing this illness. Every day we have to do the work. We can’t hand this off and expect to be well.

Free Bonus

As a special free bonus for those who purchase my book before 11 February 2018, you will get FREE access to my new eCourse You vs Fibromyalgia: Arm Yourself with Knowledge. This has five lessons and goes through what Fibromyalgia is, my six tips, the quick list of the nine things that work for me, why I consider sleep as king and a sneak peak at pregnancy, nursing and parenting with Fibromyalgia (this is the subject of it’s own full eCourse).

How to access it

Email hello @ melissavsfibromyalgia . com with the proof of purchase (a screenshot of of your Amazon orders page with Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia in there) and I will respond with the password and link to the course. The course will be released the day the book is.

Are you ready to get started on the next phase of your fight against fibromyalgia?

Night School: Wake up to the Power of Sleep – A Review

Night SchoolAfter reading The Whole Health Life I have decided to look into specific areas of my health in more depth, one at a time, at the moment it’s insomnia. One book recommended by Shannon Harvey is Night School: Wake up to the Power of Sleep by Richard Wiseman.

The research on sleep is fascinating. Based on answers around when we like to go to bed, get up and do our best work there is a table to sort us into chronotypes – larks or owls, (p41) I’m a “moderate lark”. Apparently larks are more likely to be introverted, logical and reliable while owls are likely to be extroverted, emotionally stable, hedonistic and creative. These would mostly hold true of my husband (an owl) and I.

What is also interesting is that I appear to follow the usual circadian rhythm, my body will start waking up at 7am, peak at 11am, decline to the lowest point by 3, climb and peak again around 7 with my body seeking sleep from 9. So I assume I just have slightly weaker ability to wake and sleep than others, while still following the natural pattern. I’ve filed this away for future follow up!

Another issue of timing is “social jetlag” for example during the week the owls will be tired from getting to work while their body wants to be sleeping. On the weekend (or any night for me!) When my owl of a husband wants to socialise I’m ready for bed. Causing each chronotype to suffer fatigue.

Wiseman references a lot of research. For example, in 2006 it was “estimated that around sixty million Americans suffer from a chronic sleep disorder” (p57) and approximately a third of Americans now get less than seven hours of sleep per night. In a British study more than 30% of participants had insomnia or another serious sleep problem. With this setting the scene, Wiseman goes on to explain what happens when you don’t get enough sleep – spoiler alert, nothing good.

“Belenskys’s study reveals the highly pernicious nature of even a small amount of sleep deprivation. Just a few nights sleeping for seven hours or less and your brain goes into slow motion. To make matters worse you will continue to feel fine and so don’t make allowances for your sluggish mind. Within just a couple of days this level of sleep deprivation transforms you into an accident waiting to happen.” (P67)

After all the bad news around not sleeping enough, Wiseman shares his secrets of super sleep and they include include:

1. Create a bat cave
Dark and silent room, right temperature, safe, only sleep and sex in the bedroom.

2. Set up during the day
Nap right, exercise but not too close to bed time unless it’s gentle yoga, use your brain and energy, know when you’re tired (don’t ignore sleep cues, unless you are tired all day, then don’t ignore your bedtime).

3. Prepare for bedtime
Warm shower/bath, write out your worries, snack right, lavender (unless it gives you a headache!).

4. At bedtime
Counting sheep, happy thoughts, fake a yawn, try to stay awake (reverse psychology on your brain!), set up some sleep cues (I have an eye mask, the dark and gentle pressure on my eyes now cues me to rest).

5. In the night
Get up (unless you physically can’t), don’t panic – apparently we get more sleep than we think, relaxing in bed is good rest and the closest the list comes to recommending meditation is to suggest progressive relaxation (I do a body scan meditation when I wake).

Nothing here is new to me, but it is presented in easily actionable chunks, if you want a list of sleep hygiene to follow, this is a good one. I would add meditation, I can’t nap and even if I do it’s only after a long time of trying and I feel gross afterward. So I meditate. Sometimes, if all the stars align, after a 20-30 minute meditation I’ll nod off for 5-10 minutes and wake up feeling nicely rested (very unusual). I use guided meditation during the day, at bedtime and in the night I do a body scan meditation (I visualise each body part individually relaxing, sometimes I’ll imagine it’s warm and tingly and relaxed, other times I’ll just imagine each part in turn).

Again as I delve into the research around sleep I am flummoxed at the lack of worry the doctors I have come into contact with have shown for my sleep. They should know how desperately humans need it, let alone people with chronic pain and fatigue already. I’ll keep you updated if I find anything useful in my research and experiments.

A Tricky Parenting Secret

Do you want to know a tricky wee parenting secret? After three years of being a mama with a chronic illness, it’s just dawned on me…A Tricky Parenting Secret

It doesn’t take as much as you think to make a nice day for your kids.

Take a day recently as an example, I’m exhausted and my pain levels have been creeping up thanks to the baby waking up to six times a night. We went to church (with a baby and a three year old, it’s not so peaceful anymore) got frustrated with Nu not being quiet. We’re not crazy, we know he can’t sit quietly for just over an hour. But not yelling would be great.

Back at home, he was frustrating us, we were feeling cabin fever but also the weight of the incomplete housework (sorry our bathroom gets cleaned fortnightly now eek). Baby wasn’t playing ball with the napping. I was so tired I felt sick.

But we decided to go out. I wanted to be tired and sore out, instead of tired and sore at home. So we bundled into the car, drove half an hour, of which the baby slept 25 minutes (he’s a chronic catnapper) and visited a nice beach with a park. Parking was difficult, we got a 30 minute park, unbundled and faced the cold but beautiful scene. Nu happily rode his scooter up and down the beach, baby watched. On the way home we stopped for chocolate sundaes at a special chocolate cafe.

Nu was difficult to keep occupied as we waited for our order. He was loud on the drive home.

But at the end of the day, as I remembered how frustrating it was to wrangle Nu and the overtired baby and my own issues. While admitting I had a nice time. Nu remembered a great day. He had fun. He remembered the scooter, the birds, the swing, the chocolate sundaes. And our photos look so great.

All it took was a park and a treat. And I managed to give that to him (granted, with Husband’s help) despite pain levels of 5/10 and fatigue levels up the whop.

It is a timely reminder as I worry about my lack of energy and time. As I worry that I don’t have enough to split between two kids. But I do. I continually find reserves I didn’t know I had, for their sakes. And my little efforts to keep Nu occupied pay off.

On days where we’re housebound by baby and pain levels, Nu is just as happy to bake (he loves to stir!) and colour, an ride his digger (as long as I’m watching!) and snuggle while watching a movie.

So now my definition of a successful day is when I ask Nu, “did you have a nice day?” And he responds with an emphatic yes!

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Nu loved his chocolate sundae!

New Name, Same Mission

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I have spent a long time thinking over the name of this blog. I don’t claim ownership over the Fibromyalgia. It is not mine. I will never say “my” before Fibromyalgia. However, when you name a blog, people need to know what it is about in order to find it.

So here it is, Melissa vs Fibromyalgia. This encapsulates my mission perfectly. I am fighting Fibromyalgia. Not just for myself, but for my two beautiful, busy boys and the love of my life (Husband).

This site is the compilation of my learning from my own journey and from my research.

Here’s a post that I wrote about: The Whole of Life Change Anniversary

Here’s where I write about What it’s Really Like to Live With Fibromyalgia

Here’s a recent post of what other bloggers and I have found to help with fighting Fibromyalgia: What Works: A Roundup

I am trying to come to terms with the idea that this could be a progressive illness. I cannot give up that nugget of hope that I will find some measure of relief one day.

Welcome to the continuation of my journey.

2014, Some Resolutions & Thank You

2014 has been an amazing year of truly terrifying highs and some dips.

On paper, it sounds like a magical year – in practice, with the fibromyalgia and chronic fatigue, it’s been tough.

The sort of tough that pays off.

I married the love of my life, met the joy of my life (my baby), made huge strides in my lifelong journey of self discovery, progressed in my career (amazingly) and made some (mostly mental) breakthroughs with my health.

There were some spectacularly hard moments, but man have I been happy.

As I look forward to 2015 and make a list of hopes and dreams I have been reflecting on everything in my life. I have been seeing the silver linings and taking the time to appreciate them.

My hope for 2015 is that I continue to grow, love and strive to succeed.
My goals are:
*to learn something
*to keep experimenting with my health
*to enjoy my husband and baby
*to arrange my business/work so that I maintain my work/life balance and have enough energy to be the mama I want to be

Pretty simple!

I also hope to keep writing this blog, I hope it helps people. My little dream is to produce an ebook of tips and encouragements for mamas journeying with fibro/chronic fatigue/related illness.

Thank you for reading. Thank you to everyone who shared comments. It’s so nice to connect with others who are in the fight.

Melissa x