10 ways to manage your children with your chronic illness (MS)
You may be thinking, how does she cope being a stay at home mama (SAHM) with twins and a chronic illness??
I often wonder that too, but here are some tips that allow me to manage as best as I can…
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Before I get into this post, make sure to check out my Baby Routine Template. Click on the image below to get your free download.
1. Sleep training
This is such an important step. Having a chronic illness means that you can get exhausted for no reason.
I bought this book: Healthy Sleep Habits, Happy Twins: A step-by-step programme for sleep-training your multiples when I found out I was having twins and read it all throughout my pregnancy. I swear by this book, it really worked for us. You can get it right here!
There are many varying opinions on how to sleep train twins. However, reading this book whilst pregnant really helped me to prepare for what was coming. It didn’t prepare me for the crazy sleep deprivation we would feel in the beginning though. My husband and I had to come up with ways to cope…
Here is how we managed… Because my husband was working as a teacher all day it was vital that he got at least 5-6 hours of sleep every night. In order to make this possible, we unfortunately had to sacrifice our time together as husband and wife in the evenings so that we could take shifts for the night.
Together we would do our bedtime routine, which consisted of music and bath time. Then at about 6.30pm I would go to sleep and Anton would be on daddy duties until midnight, then we would switch and I took over. I had slept for at least 5 hours and was fully charged to face my shift. Anton got to sleep at least 6 hours and then he had to get ready for a full day of teaching. I mean poor guy, not sure how he managed to get through the day, at least I got to nap when the boys were sleeping.
One of the most important things I took from the book: Healthy Sleep Habits, Happy Twins was one up both up. That means that if one baby wakes up for a feed then you need to wake the other one to eat as well. I know people say ‘NEVER WAKE A SLEEPING BABY’ and I agree to some extent. However, that rule doesn’t apply to twins when you are sleep training because otherwise they would both be on different schedules, which means that you will be up round the clock and that is not realistic/possible or fair on you.
Now that my boys are in a routine, sometimes they both sleep past their allotted naptime and in that case I apply that rule. I don’t wake them because they obviously need the extra sleep.
In the beginning though, it was tough, so tough that our parents stayed over (well 1 did and 1 stayed late then went home.) This support was INTEGRAL to our sanity.
If I’m honest it was tough on our marriage because we never got to spend time together, but we both knew that it would only be for a short period until the boys finally slept through the night.
Not to boast because we still have the occasional rough night. (Teething is the worst!) We managed to stick to our guns and follow the steps of sleep training to the best of our ability and it worked. Israel and Josiah started sleeping through the night at 5 months. (2 corrected)
Although I have to say it became quite obsessive to other people because I refused to go out if it meant that the boys would miss a nap. I didn’t allow myself to veer of the plan, which in hindsight I should have done once in a while. Saying that though, I was always so very tired that getting dressed and going out was always at the bottom of my list or never made it onto the list 😀
One word that people would use to describe me is… organised. I have always preferred to be organised although before MS I used to be very sporadic with my organisation endeavours and only felt the need to plan in advance for the major things in life. However, as soon as I was diagnosed I realised that I would have to start planning everything down to the small details.
MS is so unpredictable and can change at any moment, depending on circumstances; could be bad weather, an upset, too much walking, too much standing, getting tired quickly, fatigue taking over for no apparent reason, feeling dizzy… the list goes on. I became an excellent planner, planned for every eventuality (obsessively so.)
I ALWAYS had a game plan when going somewhere. So when it came to creating a routine for my boys, I found it came naturally for me. I knew I needed one in order to survive. Here is a glimpse at the routine we currently have, although the boys are now 14 months and are dropping one of their naps so I have to be flexible and change up the schedule.
This is how we do it; obviously you can vary it to whatever suits you as a family. Keeping to this keeps me sane and helps me to know what it coming next.
Speaking of the importance of a routine. Make sure you grab your FREE Baby Routine Template.
Click on the image below to download
3. Sleep/rest when your babies do.
This is something all Mamas should do, but those with a chronic illness need to ensure they do it all the more. Which leads me on to 4 and 5.
4. Ask for HELP/ Accept HELP.
This is one thing that I struggled to do/didn’t do but it is needed, after all we have a chronic illness Whilst the boys were in hospital for 2 months, my mother-in-law cooked big meals for us to freeze and eat whenever we needed to. I was expressing at the time therefore, I ate HUGE portions, so her food was greatly appreciated.
She also did our laundry. At the time I felt guilty for no doing it myself but it was clear that I was needed at the hospital with my boys. You may not feel that you need that but trust me, your body will thank you.
Help can be in any form, it could be having a friend watch the twins while you sleep or shower. Have a schedule of when your friends and family can come and offer support, that way you can still maintain your independence without exhausting yourself unnecessarily. Find a balance that works for you.
5. Don’t beat yourself up about having a messy house. Know your limits.
Let me tell you that our place looked like a bombsite for a good 6 months. We initially didn’t want anyone to see it in such a state until I had the revelation that anyone we invited into our home were usually close family, friends or people who knew our circumstances and they already understood that things were hectic with twins and a chronic illness and did NOT judge us and if anything actually wanted to help us. So don’t stress about how your house looks, save your energy to focus on the things that truly matter.
6. Make other Mama friends in the same or similar circumstances.
No one, can possible understand life with a chronic illness and raising children unless they are in that situation. Find other Mamas who share your situation and meet up with them or just speak to them and get and give advice. There are plenty of Facebook groups out there, you will be able to find one suitable for your specific circumstance.
For my circumstances it is other twin mamas or mamas with MS . I am a member of the Britain’s twins group on Facebook. I have received invaluable advice from parents that have older twins or parents going through the same thing that I am. Sometimes people to want to rant about their day and need understanding and support from others that have been there.
Join Tamba (twins and multiple birth association) for great advice and discounts.
7. Make baby food in bulk and freeze.
Israel and Josiah have HUGE appetites. I have no idea how, because they are still small but they will each eat 8oz food at every meal.
Another thing that helps me survive is being organised with what food they are having and making it in bulk. Because I make everything from scratch it can be very time consuming.
One of the mamas in the twins group gave me the advice to buy a slow cooker and I thought ‘what a great idea’ although I didn’t know much about them. I put a status out on Facebook asking if any of my vegan friends find using a slow cooker useful… I got a consensus of buying an Instant Pot instead of a slow cooker.
It is a little pricier but it has 7-in-1 features. I had to do some research on this because I wasn’t keen on spending the money. However, I eventually did and boy was I happy that I did.
The things that you can make in the one pot is just wonderful, there are Facebook groups about it and loads of YouTube videos on what to make. It makes things in bulk (in one pot!) talk about not having a whole heap of things to wash up (who wants a heap of washing up? NOT ME.) The Instant Pot is so wonderful that it deserves a post of its own. That’s what I will do… Watch this space.
8. Eat healthy foods and drink plenty of water. Find a balance.
One thing I do know about raising twins without a chronic illness, is that you need to have lots of energy reserves. How much more so with one…
I have found that I don’t have time to eat in the day because it is always full on. My hubby won’t take that as an excuse and so he cooks for me, that way I cannot say that I didn’t have time to eat. I am so blessed to have him looking after me the way he does.
He understands how tough it is at times with the boys and sees just how there aren’t enough hours in the day. I tend to get HANGRY and impatient when I haven’t eaten and pushed myself all day.
That is why it is so important to ensure we always have at least a snack (preferably lunch) throughout the day. Preferably fruit because of the sugars and the fibre. We must treat our bodies with the utmost respect and fuel it with responsible foods.
Now don’t get me wrong, I have days where I eat foolishness, but generally at home, we only ever eat unrefined carbs i.e. wholemeal bread, brown rice, brown pasta. My body responds so much better when I treat it well.
9a. Do not feel guilty about not being able to do as much as you once could.
Your children will love you no matter how much or how little you do. ADAPTABILITY is a big and important word to remember.
Ensure they get lots of cuddles and love, so on days where you need to stay in bed all day, they will not feel unloved or neglected by it and as the get older they will understand things better when you explain to them about how you are feeling.
Having a travel cot, a bottle heater and a mini fridge in your bedroom is something that my MS mama friend advised me, for those days when it was to much of a challenge to carry baby/babies from living room to bedroom or vice versa in case of falls, that way their milk would always be close by.
9b. Learn to accept that your illness is unpredictable.
Living with a chronic illness is very unpredictable. One day you feel amazing and the next day you feel awful.
Unfortunately that’s the nature of having a chronic illness. It sucks! Not knowing what the day will be like is often the first thing on a parents mind or please let my children be good today because I do not have the strength to deal with anything.
The needs of your children are constant but your mental and physical health may not be. However, it is up to us to come to terms with it and understand that maybe life isn’t exactly like we thought it would be, but with planning and self-care, our lives can be fantastic and really enjoyable and remember we are not our illness. It may take us a little or a lot longer depending on the day but we can still do everything that others can do.
10. Get a playpen.
This can maybe be a controversial topic but for my family, it works wonders. It allows me to lie down on the sofa when I need to rest. They are in one manageable location, crawling and standing to their hearts content.
It also allows me a few moments to go to the bathroom or to shower in peace. (HALLELUJAH!)
I like to get in there with them and read them books or play with them too so they can have some mama time.
We needed a big enough pen for 2 monkeys to play in. We have this one and it’s awesome and has the ability to change shape.
Check out My Ultimate Survival Kit for more ideas of how I survive twins 😀
Raising children with a chronic illness makes you strong even though it may not seem like it. Be flexible and adapt your expectations of yourself. You can do this! Do you have any other ways to cope? Please share them in the comments.