I was so frustrated that they had woken the baby again that I yelled. I yelled so loudly I am sure the neighbour was sorry the baby was awake. My heart rate rose, my headache was exacerbated and I felt terrible. The boys didn’t mind because they were used to periodically top blowing. This was not mindful parenting.
And then it clicked for me.
I am a Fibromyalgia and Mindfulness Coach. I have learnt and teach others to utilise mindfulness and meditation in their fight against chronic pain, chronic fatigue, insomnia, anxiety and overwhelm. But what about utilising this knowledge in my daily life? What about using it to help not only myself but my kids?
I dug into the research. As I do.
I found this article, “Analyses showed that parents who reported more mindful parenting engaged in more positive and less negative parenting behavior, which was then linked to more positive behavior in their kids—meaning less anxiety, depression, and acting out.”
Baby wearing has many benefits for baby in addition to keeping mum’s hands free. My second son basically lived in our frontpack due to his reflux. It kept him happier and helped me spread the distribution of his weight. With my third son, I have delved even deeper into baby wearing. I have tried several now and can recommend a few.
Benefits of baby wearing:
Helps baby feel secure (my son didn’t even startle when I used the blender when he was sleeping in the wrap)
Keeps baby high to your chest, you should be able to kiss baby’s head
Keep baby’s face clear
Protect baby’s hips
Get help putting it on when you are learning
Don’t overdress baby as they get super warm all cuddled up
Tips for wearing with fibromyalgia:
Baby is close to your body
Check the straps do not sit at high pain points
Maintain good posture
Sit when you can
Try to alternate between carrying and other means of keeping baby happy
Avoid one-sided carriers
Types of carriers
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The stretchy wrap, one long piece of fabric that you tie up was so amazing for our newborn/fourth trimester stage. It seems tricky but after watching a YouTube instruction video twice, I had the hang of it. Plus, you set it up before putting baby in, so it is safer when you are a newbie. It keeps baby close to your body which really helps with back and neck issues. I found this super comfortable to wear.
Once the stretchy wrap became a bit too stretchy for his weight, we moved to a semi-structured wrap, like this one. Again, it looks fussy, but one YouTube video and I was a pro. It did take some getting used to as you have to hold baby while tying the wrap up. It keeps baby closer than the below option so is useful for back problems. My picture looks a bit fussier than it needs to be as I wrapped it one last time to tie at the front rather than the back so I could sit down comfortably once he was asleep.
This is the simplest of all baby carriers I have ever tried and my favourite for bigger babies. You can use it from 3kg and there is no need for an infant insert, which means all of my children were big enough from birth (we carried baby legs in initially). My second son lived in this carrier due to his reflux. It was his happy place. My husband was also happy to use this one. Whereas the others he had no interest in at all. It is as simple as clicking the waist belt, putting baby in and putting your arms in the arm holes and clicking the back belt. It takes about a minute! It doesn’t hold baby as closely as the other two options so it is tricky for me to hold for an entire nap but it is so great to throw on when we are doing the kindy run and I have a four year old, two year old and the baby to wrangle.
I never tried a ring sling as it is too one sided for my shoulders to handle, but it could be worth a try. I didn’t bother with any that weren’t suitable from birth to toddlerhood, but you can get some structured carriers that require infant inserts for the littlest babies.
Did you baby wear? I’d love to hear your favourites.
If you are considering grabbing your baby carrier or any other baby product from Amazon, you might like to sign up for the baby registry – it’s like the world’s most portable registry!
Want more information about pregnancy and parenting with fibromyalgia?
I’m right in the trenches of the war known as infant reflux. In addition to this I have a 4 year old, a two year old and fibromyalgia. It can be difficult to remember to look after myself. I have developed some healthy practices to help me stay as well as possible in amongst it all.
Here are some healthy practices I’ve been managing and some I want to begin:
Sometimes it’s just my legs and neck while I stand with the baby in the wrap. Other times it’s a very modified yoga practice for my pelvis issues. It’s always a healthful thing to do.
Peppermint for my tummy. Chamomile to relax. Chai tea latte for a treat.
Shower or bath
Every single day. This is not negotiable as I need the pain relief and the time out (in addition to cleaning up!)
Usually I do my best to notice and be thankful for the good, but I am currently formalizing the practice with a journal book I purchased for 100 days of gratitude. All you really need to do to get started is to write down three things you are grateful for each evening. It can be as simple as you survived! I talk about gratitude as part of the mindful practices you can incorporate to help you manage chronic pain, fatigue, anxiety, overwhelm and more. See the free workshop here.
Lots of water is required for nursing. I would like to start adding fruit and herbs for even healthier hydration.
I have an essential oil pain cream that I adore, especially for my neck and shoulders. Lavender and german chamomile for pain relief and sleep aid. Peppermint for headaches or tummy aches. I’d like to learn more and diffuse them during the day. Action: tell me your favourite types and what you use them for!
Eating (as healthily as possible)
While I am mostly one-handed carrying a baby all day I am just trying to eat enough. When I can I priorotise salad, fruit and smoothies. Check out four healthy eating practices you can start right now.
This is big, especially when your sleep is being interrupted more than usual. Having a tricky napper means that the old saying “sleep when your baby sleeps” is irritating and impossible. So I will get everything set up (heat pack, earphones and YouTube video I want that day), get baby to sleep and quickly lie down. I love this 15 minute one for when I’m not game enough to try for this 30 minute one.
Reading! I’m an obsessive reader and usually have more than one book on the go at a time. I also like to scrapbook and colour – although I haven’t had the time for these recently. My blog is also something I spend time on.
Do you have any healthy practices you do to sustain you in busy seasons?
Having done this three times, I have formulated some tips for coping with a newborn and fibromyalgia. They are split into the key areas for dealing with fibromyalgia in general – sleep, general health, pain management and expectations.
Sleep is king (always) and for coping with a newborn with fibromyalgia
Give baby to your partner/support person with a bottle (formula or expressed breast milk) and go to bed early. With our first I expressed at 8.30pm and went to bed at 9pm. Husband would hold sleeping baby, feed him when he woke, wind him and bring him into the room. Those precious hours of sleep made a huge difference, especially as I flared the worst with him. Unfortunately we haven’t managed this with our second (reflux and colic, we had to keep each other company in the storm) and third (I’m breastfeeding and he refuses the bottle) and I so wish for those three or four hours of sleep!
Find a person each day to visit and hold baby while you nap or meditate. Unless you are lucky enough to have a baby that naps in their own bed for more than 20 minutes at a time, I never got one of those!
If you don’t have a visitor to hold baby and baby isn’t napping in their bed for you, lie down while holding baby (meditate, pray, read, watch television -just don’t move) -they will probably sleep better and you can rest.
Help baby sleep. With all three babies I fell into the trap of doing all the things and just made it harder to fall asleep.With our first we waited five overtired months to sleep train and after much trial and error we found he needed a good 15 minutes alone to decompress before he slept 7-7 with a 10pm dream feed (anything we did just prolonged it and made it super difficult for him to sleep).With number two at 22 months (the reflux made us nervous to sleep train) we started ignoring him in the night, he would grizzle for 10 minutes, go back to sleep and wake in the morning so much more refreshed than us going in and out all night.With number three I was standing, jiggling, patting and shhing and it took ages to get him off. Then I noticed my husband would sit on the couch, jiggle him a little, baby would cry for a few minutes and then go off to sleep! If I catch him before he’s overtired, ensure he is well winded, swaddle him, sing his songs and put him down awake he will go to sleep himself with literally a minute of grizzling. I haven’t figured out how to get him to do longer than 20 minutes of sleep but it is much nicer for both of us. We are setting the foundations for later sleep. Sleep is important for mama and baby.
Drink lots of water
Eat healthily and regularly
Take a multivitamin
Check your iron levels and address low levels
Massage yourself with lavender oil regularly
Take a hot shower or bath every day
Get into the sun for at least five minutes
Go for a gentle walk, even if it’s five minutes in your garden or down your street
Hello friend, are you new here? I’m Melissa and I am on a mission to see that everyone receives resources and encouragement to thrive with fibromyalgia. Please come and join my free You vs Fibromyalgia micro course by signing up to my newsletter. You will receive access to a free resources page too! If you are curious about me and my journey you can have a search through the archives. Check out the What I Offer Page for all of the resources here.
Pregnancy and Fibromyalgia Facebook group – come and chat pregnancy, parenting and fibromyalgia. This is a supportive, judgement-free group – I moderate it very carefully so that it is a safe place for women to discuss pregnancy, trying to conceive, nursing and parenting with chronic pain and fatigue.
As my third pregnancy progresses and the symphysis pubis disorder reduces my mobility and increases my pain, it is getting more difficult to manage everything else. Namely the two tiny children and the fibromyalgia.
In case other fibro parents are struggling, I thought I’d share how I’m managing. This is not to say I’m doing amazingly, I get discouraged and disappointed with my limitations. But I acknowledge I am doing my best thanks to several things.
I wholly believe I am coping this well this time due to sleep – or the low dose naltrexone helping me sleep. It may be disrupted by pain and pee, but it is more restorative than before. Sleep is king.
Meditation– I cannot nap but the fatigue has been creeping higher so I am eternally grateful for guided meditation to help me achieve 30 or so minutes of deep rest to keep me going.
Routine – my boys and I are creatures of routine. We have the same morning and evening framework daily and set plans during the week. They expect the routine and I can provide it even when greatly diminished.
Flexibility – within this routine there is flexibility. For example, some evenings when husband is at work and I’m exhausted we will do a fish and chip, movie evening. Some nights we skip the shower.
Time saving – I bunch jobs. I make their lunches at the same time. I throw dinner in the pressure cooker or slow cooker in a gap in the day. I shower the boys together (Wyatt adores showering with big brother). We sing a family song together at bedtime and they are going to bed around the same time.
Help – we have kept them in their routine from when I was able to work. Noah does kindy two mornings and they both go to their carer’s for two school hour days. This enables me to get to appointments, cleaning, cooking and resting, which I was not managing while at work.
Easy activities – I keep a snap lock bag with crayons and a scrapbook to get out on a whim. There’s a tub of outdoor chalk in the lean-to outside. A box of play dough and supplies lives in the cupboard. We have a trampoline and small slide structure for backyard fun. I keep a rotation of toys going in the lounge so they don’t get stale, the boys both love blocks. Indoor parks are great in wet weather too. And books, they both have their favourites. Don’t underestimate balloons! My boys will play balloon for ages. (Actually I can and will write a whole post on this, look out for it!)
Television – at that time of day when the kids are tired and I need a break, we will sit and snuggle and watch the tele. No mama guilt y’all.
When I was a brand new mama, waddling after my episiotomy with an unsettled windy baby, I took real solace in having a miniature framework to follow at home.
Frameworks for the Newborn Period
I am a big fan of frameworks over rigid routines, not that newborns are into routines either.
At first it was just feeding 2-3 hourly and taking medicine at 6-8 hour intervals. This was enough to keep me feeling tethered.
A quick note on feeding in those early days (first 12 weeks): 2-3 hourly tends to be a good guide but both my boys cluster fed in the evenings and look out for growth spurts. I don’t believe in “stretching out” to a certain length between feeds until baby is bigger.
I created a chart that I populated for several months. I am a pretty chart person as opposed to an app person. But apps do the job too.
By the time my second baby came along I had learnt many good things. Including the magic of appropriate wake times per age. So my chart became augmented not just logging sleep but helping to pre-empt when it was due. It made a huge difference not letting baby get overtired. Who knew you had to tell a baby they needed sleep?
It also helped as I mix fed my second, so I had to track feeding physically and formula and expressing. It was crazy, this alone took most of my day!
I also made it a point to track my rest and medicines so it wasn’t all about baby. “Rest” includes a nap (if you can), meditation, restorative yoga, a hot bath or shower etc. Things that are nourishing for you. As in pregnancy, the postpartum period is not a time to forget mama’s quality of life.
Baby Care Log Printables
As I anticipate my third baby, I have reincarnated my chart, but not just for me this time, it is now available in my Etsy store! So head on over and pick yourself up one too. As an aside, being off work due to severe pelvis issues that left me requiring crutches to walk, I found that I really enjoyed creating templates and helpful products for those of us fighting fibromyalgia and being mamas!
I created the New Mama Daily Log which includes baby feeding and sleeps, with your own self-care such as mama meds and self-care/rest tracking. The Breastfeeding and Expressing Log is for those who want to carefully track these, this is handy for mix feeding and exclusive expressing too. The Baby Care Log has the choice of simple and complex logging – baby feeding, nappies, sleeps, expressing and bottle feeding with a log that enables more detail when you need it and one for less detail (when you’re tired?).
More Information About the Newborn Period
For more information on wake times by age, I love this article with this chart.
For more information about nursing see my article about it here and about expressing/pumping for your baby here.
I like this article on the fourth trimester (aka the first three months).
If you are serious about digging in and learning about fighting fibromyalgia while pregnant and during the postpartum period, you might like my Pregnancy and Fibromyalgia Workbook – it will take you through the information and help you to make a pain management plan as well as plans for coping during the third trimester, delivery and the first six weeks. It also goes through nursing with fibromyalgia.
Fatigue and low energy levels tend to be significant issues when fighting chronic illnesses like Fibromyalgia, chronic pain and myofascial pain syndrome. In addition, pretty much all mamas that I speak to could do with an energy infusion too, so today I am offering you a list of ways to increase your energy.
Affiliate notice: Some of my links are affiliate links, if you make a purchase using these links I may make a small commission at no extra cost to you.
Meditation – I am a big fan of meditation, as anyone following my blog for any amount of time would know. I can’t nap so it’s been a lifesaver on the days I am too miserably exhausted to keep going.
Healthy eating – food is fuel, fuel it right and it will work better. Personally, cutting white carbohydrates made a huge difference. For some it’s completely cutting grains, others it’s the entire Paleo diet, it’s all worth a try.
Getting the best night’s sleep possible – yes, this is a minefield when you have a chronic illness for which insomnia is an issue or when you have tiny children partying through the night. Low Dose Naltrexone is the only way I have managed to sleep in more than one hour blocks. For others it increases insomnia. If only insomnia wasn’t so contrary.
D-Ribose – this didn’t work for me, but my worst issue was definitely lack of sleep so I may notice a difference when I try it again after baby comes. I have heard heaps of people who swear by it. Update 2019: I tried it again now that I am sleeping better and it’s helping! Mostly with muscle recovery and post-exertion pain and malaise. I look forward to reporting back further.
CoQ10 – again, this didn’t previously work for me, but now that my sleep is under better control, I am keen to try it again when baby vacates the building! I have also heard of a high number of people for whom it works. It’s best taken in it’s more activated form ubiquinol.
Ashwagandha – I find taking this a bit like having too many coffees, I can’t seem to tolerate it, but it was worth a try.
Acetyl-L Carnitine – this one upset my tummy so I couldn’t take it near long enough to ascertain if it would help with my energy levels (two doses and I knew). This is another some that some people seem to swear by.
Essential oils – I adore essential oils, especially as they are completely natural. As I was just starting my journey when I became pregnant, I haven’t tried as many as I’d like. Though lavender and roman chamomile are brilliant to massage into tired, sore legs, glutes and low backs!
Ginger – it is warming, soothing and comforting. As a bonus it also soothes an upset tummy.
Lemon – it is meant to be uplifting and inspiring a positive mood.
Vitamin D – get outside into the first morning sunshine or consider a vitamin D supplement.
Stay within your energy envelope – yes, this involves finding your energy envelope and it isn’t easy. I wrote about this in my book, that I was trying to fight my body as if I was at a level able to work six hours per day (and then go home to small children) when my pain and fatigue levels were more in line with four or five. This website takes you through the idea of your energy envelope. It’s pretty in depth and not a quick fix. But adhering to what I know I am capable of makes a big difference in pain and fatigue levels.
Diaphragmatic breathing (breathing from your tummy NOT your chest)
I hope that at least one of these 22 things are helpful for you. I’d love (LOVE) to hear of any other things you have come across to help you with fatigue/energy boosting?
The one thing I disliked about the antenatal classes that we attended, is that they were not allowed to talk about bottles or expressing at all. I had to learn the hard way that mix feeding is a very good option to help your baby get some of that precious liquid gold.
In my Nursing with Fibromyalgia article, I recount my first two experiences with nursing. After three awful days with my son, during which I had to hand express onto a spoon while he screamed next to me while alone (they refused to let my husband stay and the night midwives didn’t want to help as I wouldn’t have their help at home *sigh*) the midwives showed me to the expressing machine. I didn’t even know that expressing was an option. My mum nursed all of her five children and if babies weren’t nursed they had formula, I hadn’t heard of this middle ground!
Video: Pumping/Expressing for your Baby
I wish I’d known about this middle ground so I didn’t have to take a crash course when so sleep deprived and sore.
Now I always include expressing/pumping as an option when I discuss nursing with Fibromyalgia because my number one tip with coping postpartum is to express early, go to bed early and then have a support person give the baby the next feed. As someone who cannot nap, I need those precious hours of sleep at night. So, I would express at 9pm, go to bed right after and then my husband would do the next one or two feeds (depending how early on it was and if he was going to work the next day). I would then wake after a few hours sleep in a row to deal with the baby for the rest of the night. We couldn’t do this for our second because his reflux was so bad that we had to keep each other company to get through the scream-filled evenings. And I suffered for it. There were nights when I fell asleep upright while feeding him.
Affiliate notice: Please note that some of my links are affiliate links, if you make a purchase using these links I may make a small commission at no extra cost to you.
The Breast Pump and Supplies
For the first two I used a heavy duty hospital grade electric pump (Unimom, not currently available on Amazon UK or US). This is necessary if you are looking at exclusively expressing or regularly expressing.
If you are going to express semi-regularly, say a few times a day (at work perhaps) then a double electric breast pump, like this Avent one, is a good idea.
If you are going to express once or twice a day, like I plan to with number three, then a single electric breast pump, like this Avent one, is a good idea. This is actually on my Amazon Baby Registry, and as a third time mama not many things are on my to-buy list.
If you only plan to express occasionally, a manual pump, like this Avent one, may be the way to go. I didn’t like manual pumps, they hurt me to use (I only tried two brands that were given to me by the hospital to use when my son was sick), but the Unimom hand pump was the best for me for a tight spot.
I want to try this Hakaa manual pump this time, this is more for catching let down from the other side while nursing or helping you out between feeds if you find yourself without a baby or a pump.
The reason I am so amped about using Avent this time is because their bottles are our favourite, we have used them for both of our first two and will use them for our third. I believe the shape of the teat helped Wyatt to avoid nipple confusion and enabled mix feeding. The anti colic bottles are what we used. Don’t forget to start off with the newborn teat size! We had no idea there were different flows with our first baby and that was terrible at first (far too fast a flow does not help wind!).
You can buy the Avent steam steriliser, which would make things easier, but we were on a budget with our first and found that a basic tub that we filled with water and put sterilising tablets in did the job. You should sterilise all bottles, teats and dummies for at least the first six months.
There are special bottle warmers that some people swear by, but we found a jug of hot water to be sufficient. Please don’t microwave your milk to reheat it, it may heat unevenly and burn baby.
If you are exclusively expressing then you need to express as often as the baby would feed, approximately three hourly. You will need to do this until your supply is established at around six weeks. After this you can try reducing the frequency (say once overnight) or four hourly or both. The trick with expressing exclusively seems to be keeping up with what baby consumes, you may need to express more often than they feed to keep up with the growing amounts they consume.
If you are mix feeding, then you choose which feeds you are replacing to express (say 9pm). If baby is due for a feed near the same time, then you can choose to pump before or after according to your comfort level or routine. This is best while you’re establishing your supply.
You may be able to just always use formula at the late feed and your supply adjusts, just don’t do that with more than one feed at a time or you may find your supply reduced.
Sit as comfortably as possible, if you have a good pump then you just sit upright and time yourself for the 10-15 minutes.
To get started it helps to massage your breast and it can help to look at baby or a picture of them to encourage letdown. Start on a lower suction level and gently work your way up (without getting too strong).
I was advised to pump for no more than 15 minutes at a time with my hospital grade electric double pump, check what the recommendation for yours is.
If you’re feeling a bit lumpy or sore (like a clogged duct) a hot flannel on the breast can help as does massaging down toward the pump to help clear it out. I also gave myself a good massage in a hot shower when I had that blocked/lumpy feeling.
It’s also good to treat expressing like nursing directly and have a big glass of water and a snack. Hydration is important as is adequate nourishment.
When you are finished you can store the milk in a milk storage bag, like this, label it and put it in the freezer. They are useful with the zip close top for reopening if you are putting in multiple expressions before freezing.
A few tips
If you are expressing exclusively, or regularly that day, you can place all of the pump parts in a snap lock bag in the fridge between expressing sessions (so you don’t have to wash them all every time).
You can keep one milk storage bag in the fridge and put it into the freezer when full (or at the end of the day).
Generally you can keep milk in the fridge for three days and in the freezer for up to six months. This was great for me as I made an abundance of milk for my first baby very early on and was able to keep him exclusively breast milk fed for another four weeks after I stopped expressing. For more information about storage, see this article.
If you want to use previously frozen breast milk, put the milk storage bag in the fridge overnight. Use the thawed milk within 24 hours.
It takes several weeks for breast feeding to be established, but once this point has been reached you can generally reduce the expressing frequency. With my second I expressed four hourly during the day and once overnight to mimic how baby fed – but I did stop making the total amount he fed and that was OK because he had to have thickened formula for the bulk of his milk anyway.
For two great sites (I don’t want to overwhelm you with heaps of extra reading, but you can definitely Google “exclusive pumping” or “expressing breast milk”), see Kelly Mom and Exclusive Pumping.
Final notes about pumping or expressing for your baby
I feel like my whole life was taken up by milk for my second baby’s first 12 weeks, between the expressing, the thickened formula (for the reflux) and the direct feeding. When I read the research that suggests even 12 weeks of partial feeding breast milk is protective against Sudden Infant Death Syndrome, I felt very proud. So please don’t think it’s all or nothing. If you can give 20ml a bottle like I did (it made the milk too thin if I put more than that in the bottle) – that’s amazing. If you manage to give baby only breast milk for six months, that’s amazing too. If you can’t manage to nurse and you give your baby formula – you’re still amazing.
I found it ridiculous when people tried to say that giving the bottle was more impersonal, I didn’t feed with the baby an arm’s length away – I cradled him as if I were nursing directly and I looked into his eyes, spoke to him and stroked his skin in the same way, however I fed. And as a bonus, my husband was able to feed him about as often as I was and they bonded beautifully too (not that they can’t bond without that!) just a silver lining. The biggest silver lining was that I was better able to bond with my first baby this way, nursing directly was so painful for me and it was such a strain on me physically and emotionally – I was so relieved when parenting no longer included my breasts. Your physical and mental health is vital, your baby needs you more than your breasts.
Please remember that all of my learning shared above is just that, personal learning through a lot of reading and personal experience with two children. Always seek support from a lactation consultant or midwife if you need help, particularly with latching. However, if you feel that those who are supposed to be supporting you are just forcing you to do something you can’t or don’t want to do, I hope the things I share help.
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 yourself
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 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.
For more information about pregnancy and Fibromyalgia:
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