Explaining your chronic illness to children

fibro fog, Help for friends, family, and significant others, Help for sufferers, Lifestyle, Pain, Posts

I don’t know about you, but I’ve found that one of the hardest parts about having fibromyalgia (aside from the obvious) is being able to communicate what it means. Usually, people get the gist if you compare it to something more ‘normal‘, like being hit by a bus, for example. When it comes to kids, however, it gets a bit more complicated.

I find that, being the “cool” and “fun” auntie that I am *winks*, it gets difficult to tell children why I can’t play or pick them up or run around all day. It’s particularly heart breaking when you notice that they stop liking you as much. In general, though, I find that kids are very accepting of me being ill, it’s just a case of explaining why I don’t get better.

Here’s what I have found out:

1. Children struggle to understand long term illness.

If I tell my niece I am poorly, she gets it, but she expects me to ‘get well soon’ (as she wrote on the adorable card she had drawn me one time). It is difficult to explain that this won’t happen, so I try to make it easier by explaining from the start that I always feel like this. Don’t forget, it can be quite distressing from a child’s point of view, to be told that your grown up friend is always unwell- I’ve occasionally been asked by kids if I am dying, or if I am sad. Obviously this is not the case, but it might look like it to them. To help with this, I make it clear that when I am tired, I might look grumpy, but it doesn’t always mean I am, and that otherwise, I am perfectly healthy. Don’t be afraid to repeat this, as children often forget these things, and may not remember that you are okay.

2. A magic kiss or rub doesn’t make it better, but it’s cute that they try.

When my niece gives me a hug to make me feel better, it is important that I say thank you, and let her know that it cheered me up. It might not make my pain go away, but the fact that she tried is nice, and she deserves a thank you for going to the effort to make me feel better. Seeing a positive outcome will also teach her that she is doing the right thing, and being nice to someone really can help a little bit, even in the worst scenarios. This is a lesson that will keep her going throughout life.

3. Being responsible for a child is just as mentally draining as it is physically.

I know that my brain will struggle to keep up with a child’s fast pace, and I have to remember to take a break every now and then, so that I don’t wear myself out. A good way around this is to tell your child that you need a nap, they will leave you for a good half an hour to get some ‘me’ time, as far as I’ve learnt. Kids are very understanding about being tired, since they also need plenty of sleep, and I tend to find that they have no issue with letting you (pretend) sleep. You must also consider that the responsibility you hold for that child is important, so if you do feel like you can’t handle the situation, get another adult to step in whilst you take a break.

4. I’m not as strong as most people my age/size/gender, so I can’t pick them up.

Depending on the ‘format’ of your child, they might be a little on the large size, but still want picking up (i.e; a 5 year old who wants you to play). Since I am a petite 5.2″ female, I struggle with anyone over the age of 4, since they can get rather heavy. I let my niece know this, and she understands that although she is allowed to sit on my knee, I am not strong enough to pick her up all the time. She then runs to her uncle and asks him instead (teehee). Occasionally, she forgets this, but a brief “sorry, I’m not strong enough, why don’t you ask …….. instead?” does the trick.

5. I’ll be sacrificing my whole week if you ask me to baby sit for the day.

I don’t like confrontation, and sometimes, I just can’t say no. However, I know it is important to remember that you do have the right to say no whenever you like, and especially if it will effect your health. As a rule of thumb, I won’t babysit for anyone for more than a few hours, since I know that it will leave me drained. If I have to, I make sure I have the help of another adult, who can take over when I can’t. If a child asks me to spend time with them, I generally give them about an hour or so before telling them I have important adult stuff to do. Remember, it is important to spend time with the children in your life, but don’t over do it if it will make you ill. Likewise, don’t be mean to them, a simple explanation will work just fine.

I hope this helps you to explain your situation to the children in your life, whether they be your own or someone else’s, and for any parents out there, don’t forget to think twice before asking a friend to babysit. It might not be as easy for them as it is for you.

Don’t forget to comment if you have any tips for childcare with chronic illness, and let me know if this post was helpful at all- I love to hear your feedback.

See you soon, guys.

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Beat back the fog in five simple steps

fibro fog, Help for sufferers, Posts

Having fibromyalgia has many a downside, but one of the most irritating (and most overlooked) issues of the condition is fibro fog. From losing your glasses (check the top of your head) to forgetting an important appointment, the fog ruins us all at some point. Here are five simple steps to get the worst of it under control…

1. Establish a routine.

If you set a daily routine, it helps to keep track of those pesky things that love to disappear, such as your glasses and keys. I like to leave my keys in the same place each day so that I know that they will definitely be there when I need them. Likewise, checking for That Important Thing every time you do a certain task can help to set up a routine.

2. Set reminders on your phone.

I ALWAYS forget to take my meds, as in, I forget my meds every. single. day. To combat this, I have two reminders set on my phone, one at my usual wake up time, and one a few hours later, just in case. Honestly, it’s the best thing I’ve ever done, and it’s prevented countless numbers of flares.

3. Invest in a diary, journal, or planner.

Planners are useful for getting down those daily events that often slip your mind, and getting a little pocket diary means that you can take it everywhere for when you need it the most. Appointments, anniversaries, contacts, and to do lists can all be jotted down, and you can even take note of any important symptoms or fibro issues that you think are important. This way, you have an ‘external hard drive’ for your brain.

4. Load up on post it notes.

If there’s something you know you will forget, there’s nothing better than a huge glowing sign to remind you. Although not quite huge or glowing, an easy trick to help you to remember something is to leave your future self a post it. They have the added benefit of being colourful, sticky, and small enough to take with you, so you can use them anywhere and anytime. Write down a quick message and stick it where you’re sure to see it (mirrors, doors, the kettle, your fave snack).

5. Learn to ‘pace’.

Pacing is a technique often used by people with chronic illnesses which allows them to function for longer. Although it primarily helps with fatigue, it is also good for curbing mental exhaustion and cloudiness. Set out daily goals with steps towards each one, but make sure that they are small and achievable with breaks in between. Remember, set yourself a limit and do not exceed it. This way, you are less likely to spur on any foggy moments that would usually be caused by tiredness.

Have you got any of your own ideas? Let us know in the comments and don’t forget to like the post so I can see that I’m not just talking to myself *awkward laughter*.