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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Depression and Fibromyalgia

Depression, Posts, What is fibromyalgia?

Author’s note: A while back, I had a little help coming up with a post idea, and I wrote it up, but never got round to finishing it. Well, here it is, finally completed, more than a year later. Better late than never, I guess…

********************************************************************************

My wonderful mother-in-law gave me an idea tonight whilst I was talking to her, so I decided to take her advice and write a post on it.

She told me that I should look into the effect that fibro has on my mood (and vice versa) to see if (and why) there may be a correlation between the two. My response is this:

Yes, fibromyalgia does have an impact on my mood. A BIG ONE. The multitude of horrible facets that fibro gives you; the pain, the tiredness, the forgetfulness, and so on, mean that it’s very difficult to stay positive. For me personally, antidepressants are a must, but there’s loads of other things I try to do on top of that to help me stay happy. I keep tidy (OCD plus chronic illness is a recipe for disaster), eat healthy, do things that I enjoy, and surround myself with positive people, plus many other little touches; all of which keep me happy(er). Obviously the odd low mood is inevitable once in a while, but I try to keep it under control as much as I can.

Furthermore, my mood ALSO has an impact on my fibro. We all know that having depressive symptoms can leave you feeling under the weather in terms of your motivation, but it also effects the physical body too. I find that when I am down, my pain levels reflect this and my energy levels drop as well. In addition, I have a greater sensitivity to temperature change, noise, and brightness, and my cognitive abilities begin to deteriorate. I can safely say that yes, my mood does impact my fibro, although why I have no clue.

Funnily enough, it shouldn’t be a surprise that my mood and my fibro are interlinked, as they are co-morbid with each other. This makes sense, since both are thought to stem from issues relating to the nervous system. Due to this, I have been prescribed a very useful form of medication known as an SNRI. If you are unfamiliar with these, they are a type of antidepressant which effects chemicals within the nervous system (serotonin and norepinephrine, to be exact), and has the simultaneous effect of dulling my pain and lifting my mood. Bonus.

Now, back to the original question, I can safely say that my mood and my fibromyalgia are interlinked, especially since they are co-morbidities. However, the exact reason as to why can only be explained with the development of fibro related research. As for now, we can only guess that it is due to neuropathic structures and the role of the nervous system. I wrote a similar post to this, explaining a few theories as to what causes fibromyalgia, so you might want to check it out here. I will also be writing a few more posts soon which will relate to this topic, such as what symptoms are common, what co-morbidities may be linked, and some more scientific explanations surrounding fibromyalgia.

In the meantime, let me know if you have any of your own science-y questions, and I’ll try my best to answer them (no promises- it’s been a while since my A-levels!). Likewise, if you think you have an answer, I’m sure we would all love to hear it.

 

Travelling with illnesses: be a pro jetsetter

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

So obviously travelling is a nightmare, but it gets so much worse when you’re ill. Here are a few bits of advice for next time you hop on a plane.

1. Be organised.

Before you go, gather up all your documents and get them in order, and then write out an itinerary for your travel. Give yourself plenty of time and plan out any rest breaks or emergency stops in advance.

2. Get comfortable.

Pack a snuggly jumper, fluffy socks, and whatever else you need to get cosy. I like to bring a soft, lightweight scarf, so that I can use it as a blanket when it gets chilly. Wear comfy clothes and consider taking an extra pair of shoes that slip on and off. If you’re spending a good few hours on the plane, you need to do it in comfort, otherwise you’ll regret it later.

3. Pack your pills properly.

Make sure you have everything you need in your hand luggage (just in case), and bring all of your appropriate prescriptions as proof. Remember to pack extra in case you run out or lose some. All of this means that can you can guarantee that you won’t lose them in the hold, and you have them in case of an emergency.

4. Stay hydrated.

One of the worst things about flying is that you get reeeaaallly dehydrated. Not only does this give you a headache, but it can severely effect your body, and make chronic illnesses feel ten times worse. Make sure you pick up a bottle of water in duty free, and make the most of any free drinks you’re offered in-flight. If you’re prone to dry skin or eczema, it’s also a good idea to pack a small, travel-sized moisturiser or emollient. Furthermore, rehydration sachets are brill as a pick-me-up if you feel worse for wear, and come in handy for hot weather as well.

5. Upgrade your seat.

It’s worth thinking about paying extra for more leg room, but as a last resort, you can always ask to upgrade to an empty seat once everyone has boarded. This is usually free, as no one is going to be using the seat anyway. This is especially useful if you have joint problems, chronic pain, a weak bladder, or any physical disability, because it means you get more room for movement and easier access to the aisle and toilets.

Hopefully, this will help the next time you travel. I’d love to hear if you have any suggestions, so don’t forget to like and comment. I’ll write a few more travel posts soon, so remember to stay updated! Thanks guys x

Travelling with illnesses: I learnt to be kind

Posts, Travel, Travelling with illnesses series, Uncategorized

If you’ve been reading my blog already, you might know that I’ve been on a volunteer trip recently, and it’s led me to explore the murky depths of travelling when chronically ill.

Unfortunately, past me decided it would be a good idea to book a very expensive and very challenging journey to the other side of the world, without considering that I had a year to wait before I could go. Now, all things considered, a year isn’t a very long time. When you have to fundraise £2000, a year is positively miniscule. On the other hand, a year is also a helluva long time for someone with a chronic illness, and a lot can happen over a few months. For example, I didn’t expect that my fibro would stop me from completing my last three modules at university, or that it would leave me bed bound for weeks on end. In hindsight, I should have known something would happen.

Anyway, all things considered, I still went through with it, because I’d put a lot of time and money into getting there and there was no way I was giving up so close to the end.

It made me realise, though, that there were a lot of people who would do anything for the opportunity that I had, and that I shouldn’t pass it up so easily.

Getting to my destination, I also realised that there were loads of people who don’t even have half of the life that I have back at home when I’m being miserable. It just goes to show, I might be suffering, but there are millions of others out there who are all different yet all still suffering in their own way. It is important to remember that there are others out there who also need help.  And sometimes, it makes sense to stop for a moment and do them a favour, even if it is just to hold open a door or make a cup of coffee for someone.

Your actions could potentially make someone else’s day a lot brighter.

so please, if you’re thinking of telling someone that they look nice today, or if you have some spare change as you walk by that homeless guy on your way home, please follow your impulses and do it. You never know, you just might change a life.

This will help if you feel suicidal.

Depression, Help for friends, family, and significant others, Help for sufferers, Posts, Uncategorized

Having been away on a volunteer trip for the last two weeks, I somehow managed to mess up my antidepressants. Oops. I’ve been in a bad way recently, and most of my blog is on hold for now. However, I thought it was urgent to post this, so here goes…

This is what you should do if you find yourself in a similar situation; feeling depressed or even suicidal.

1. SEEK HELP IMMEDIATELY.

Call a friend, a family member, or a helpline.

Having someone to talk to can help calm you down and rationalise what may potentially be an irrational bunch of thoughts. And besides, at least it gives you someone to rant to! Getting help can make a difference in what could potentially be a life- threatening situation.

I’ll add some useful helpline links at the bottom of this post for anyone who may need them, but a quick Google can do just as good.

2. Be mindful.

Practice breathing, focusing on your body, and acknowledging (and then dismissing) your thoughts. By spending a few minutes doing this, you can help yourself to relax and think more rationally. This is especially useful if you have no one there to help and have to rely on your self to calm down.

Another mindfulness trick I like is to count out loud three taps of my dominant thumb onto each finger of my dominant hand, starting at my pointer, working to my pinkie, and then going back along to my pointer again. Basically make a pinching motion three times with each finger and repeat until you feel calm. This helps you to focus on something physical, grounding you to the present.

3. Get to your safe space.

It is very important to find your safe space, somewhere where you can relax and feel comfortable. Often, this will be under your duvet, in the bathroom, or in another quiet place. However, if you are feeling suicidal, it is important that there is someone else available to you if you need help. I would advise that you have a ‘secondary’ safe space, at a friend’s house, for example, where you have the added benefit of another human for comfort and support.

When feeling severely depressed, this is a good method of reducing any external stimuli, which may otherwise impact any anxiety or bad thoughts that you may be experiencing.

4. Treat yo’self.

Eat your favourite food, read a book, listen to your favourite song, or watch a film. Whatever it is that helps you to feel better.

Personally, I like to hide under my bed covers (safe space) with a good book and loads of food (think: ice cream, chocolate, cheese, crisps), or I’ll run a bath and sit mindfully whilst it is filling. Locking myself in the bathroom with the noise of the tub filling gives me a chance to get away from the stress of the ‘outside world’.

Anyway, that’s all for today, but I’d like to round up by asking my usual request, let us know if you have something to share! And one last thing..

You are loved ♡

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International:

https://www.iasp.info/resources/Crisis_Centres/

https://www.befrienders.org/need-to-talk

UK only:

https://www.samaritans.org/

https://www.mind.org.uk/

********http://chronicallyme.org

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!