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.

Travelling with illnesses: what I was told.

Help for sufferers, Posts, Travel, Travelling with illnesses series

So I’ve got an apology to make. I haven’t posted anything in over two weeks. This is partly because I have been suffering (more on that soon), but also because I’ve been jetsetting.

For the last two weeks, I’ve been in a beautiful little country called Laos, making an attempt to help those less fortunate than me. Not only has it been one of my lifelong goals to travel, but spending time there helped me to improve who I am as a person, and truly push my limits to the max.

Of course, traveling with fibro, or indeed any other chronic disability, can be a bit of a challenge. Whether it be the plane journey, the climate differences, or the new activities; travelling can be a pain (literally!).

Throughout the next week, I’m going to be sharing a little about what I did over in Laos, along with giving some helpful tips for you to remember the next time you’re abroad.

In the meantime, here are a few suggestions I was given whilst away, that you might like to try out for yourself…

1. Be mindful.

I was told that one of the most important parts of looking after your body involves being able to listen to what it has to tell you.

Next time you have a quiet five minutes, get yourself comfy and listen. Start by breathing slowly and deeply, counting your breaths and feeling your body relax as you do. Then, focus on each part of your body, starting at your toes and working up to your head, and allow yourself to feel what’s going on there. Forget about your stress, forget about the outside world, just focus on you. Once you reach the top of your crown, allow your mind to accept and then let go of those feelings, and then concentrate back on your breathing.

This time, try and empty your mind, and allow any new thoughts, feelings, or worries to float through your mind and be let go. Spend a few moments like this, allowing your mind and body to relax and push aside any mental or physical problems for the moment.

2. Get a massage.

Sometimes, having a massage can really help you to relax, and what better way is there to treat yourself than to soothe your body and ease any achy muscles? Next time you have some spare cash, book yourself in to your local spa; or if you prefer to spend a little less, get a close friend or family member to spend some time with you for a pamper evening, where you can help each other.

3. Try yoga.

Personally, I haven’t had the chance to properly test this one out yet, but loads of people have told me that it is worth the effort.

Start simple and spend five minutes each day stretching out your body and focusing on breathing exercises. As you adjust, build up your routine to focus on longer, more complicated yoga positions. If you need inspiration, just try searching your fave social media for some yoga advice, as it is a popular hobby that is widely available online.

Do you have any advice you’d like to share, or an idea to try? Or, maybe you have something to say about what I’ve shared? Let us know what you think in the comments below, and don’t forget to like and share if you enjoyed this read!

Thanks guys!

What is ‘pacing’ and how can it help my fibro?

Help for sufferers, Posts, Work

Plenty of people with chronic illnesses like to talk about pacing, but if you’re newly diagnosed or have only recently started looking for advice, then you might not know what this is.

Pacing is a method of coping with the fatigue-like symptoms often associated with chronic conditions such as fibro. It involves creating a broken down or spread out routine, so that tasks can be separated into smaller, more manageable chunks. This ensures that you can concentrate longer on tasks by giving yourself small rest breaks in between.

For example, I like to split up my daily chores, study sessions, and various errands by having at least five to ten minutes of nothing for every hour or so. After a while, I have a larger break, and if I’m struggling, I will increase the frequency of my breaks. If you don’t like to sit and do nothing, try doing something easy that takes little energy (mental, physical, or otherwise) and is a distraction from your task.

(N.B: From here on it gets complicated, so you might want to skip the next paragraph if you dont fancy the heavy reading!)

The next question is this; how do you figure out your rest to work ratio? Well first of all, you need to spend some time figuring out how long you can go before you lose the will to live. This is how long you can go before you need a big break. Then, try and count how many times within this you get distracted; this is how many mini breaks you need. Spread them evenly within the time frame, and aim for between five and fifteen minutes for each break. you can alter this to your taste later, if necessary.

If all of this sounds too complicated, just remember to aim for 3:9:10 (for every 3 hours, have 9 equally spaced lots of 10 minute breaks, so every 20 minutes have a break). Or, have a 10 minute break every so often if you can’t keep count. Don’t forget as well that you can mix up the same ratio for smaller or larger amounts of time, and for every 3 hours, have at least half an hour or more to recuperate.

Most importantly, though, is to remember that you aren’t aiming to get loooaaaddss done, but to work at an efficient pace that keeps you healthy and happy. If you can’t do as much as you thought, that’s okay. Just stop for the day and adjust accordingly tomorrow.

If you like my pacing method or think you have something to input, please help us all out and let us know in the comments.

Thanks for reading!

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*.