Apps for managing health and wellbeing

As promised in my last post about fatigue with chronic illness I thought I would write about some of the apps I use to manage my health and wellbeing.

All the apps I have are on Google play, they may also be on the apple app store or similar apps may be available for non android phones.

So these are the apps I'm using at the moment:

 The two apps I use the most are Medisafe and S health:

Medisafe

S-Health

MediSafe is a pillbox app that reminds me to take my tablets and allows me to log extra, skipped or missed doses. You can also add a list of all your medications so you can add or remove them from your pillbox as you need them. It also has a measurements function:

But for that I prefer to use S-Health.

S-health uses my phones sensors and interacts with my sleep app to track my sleep, heart rate, Oxygen Sats, steps, water, exercise and weight. It logs it all and you can then compare trends across days, weeks or months.

To track my sleep I use android sleep. It tracks your levels of sleep, time slept and amount of noise during sleep. It also records noise during the night so you can listen back and hear yourself talking about the unicorns or pick up any unusual snoring noises like sleep Apnea. Be aware that if you listen to white noise whilst you sleep it will pick this up instead.

To manage my M.E/CFS I use this app:

M.E Diary

You track your energy usage and symptoms for a set period of time and it gives you a functional ability percentage to help manage and prevent over exertion. I talk about this and how to use the percentage for pacing in more detail in my previous post.

Finally I find it really hard to rest, especially at night. For this I have various sleep noise, hypnotherapy and white noise apps. My favourite is this one:

Relax melodies

I hope there's something here that can help you manage your health and wellbeing.

Feel free to leave me Any question or comments below and as always thank for reading, if you like this post or any of my others you can follow me on Bloglovin or social media using the buttons on the right.

Thanks,

Laura :)

Fatigue with chronic illness and wristies

So since joining Conscious Crafties I've met some amazing talented people. I've also started to sell a lot of my Wristies so I thought I'd show you them. These are heat-able wrist warmers with optional scents made with real petals and flowers. I make them out of polar fleece so they are lovely and soft and hold their heat really well. They're great for arthritis, RSI, carpal tunnel, Raynaud's, EDS and fibromyalgia plus the occasional ache and pain. Now I've shown you these i'll tell you what they have to do with fatigue:

I'm making some today but fatigue is getting the best of me so all I've managed to do is pin them and make final cuts. Because fatigue will mean this post will take me all day to write I thought id write about fatigue.

Someone without chronic illness might think, or say: "what's the big deal? your just tired!" or "get some rest and you'll be fine!" That's the issue. no matter how long we sleep for we never feel refreshed, no matter how hard we rest fatigue will still hit us. After all we still have to eat, breathe, go to the loo, talk and try to have a life. All these things take precious energy when we have none.

 Our bodies are fighting our illness' so we start the day with less energy than a normal person and use more doing everyday tasks.

So what does fatigue actually feel like?

It isn't just been tired, it feels like having the flu or the fatigue you might feel after running a marathon. It is a bone aching, hard to move, hard to think, fighting the urge to fall asleep, nauseating battle. Sometimes this battle starts because we've done something like gone to the supermarket or had a day out, sometimes it starts because yesterday you did the laundry. It doesn't always make sense.

Todays battle is because I put the clean clothes away in the wardrobe and cooked a meal. That simple. I didn't run a marathon, I haven't got the flu, I didn't do an aerobics class. I put clothes on hangers and made a risotto from frozen ready prepared veg. You see the problem?!

How do we cope with Fatigue?

Luckily I can still function with the fatigue I'm experiencing today (otherwise I wouldn't be writing this), but it means that all other plans are off the table. Everything I can do from bed will be done from bed. If I have to move I will be using my chair, you see the side effect of battling fatigue is if you fight too hard you still lose.

If I don't take the time to rest today and use as little energy as possible tomorrow will be worse. At my worst with Chronic fatigue / ME I was working and I pushed through the fatigue to turn up at work and try to keep my job. After a while things got so bad I collapsed after trying to get dressed. Just pulling some clothes on was too much. After that point it took me 6 months of careful pacing and sick leave to get to the point where I could do one thing that took a large amount of energy a day, for me that was driving a short distance or going to the local store for some food.

I had to learn what used up the most of my energy and limit that. I had to learn to take rest breaks without feeling guilty and lazy. Most of all I had to learn to listen to my body.

There's a great app called MECFS diary.

I used that to log how much energy I was using. After a week it gives you a functional ability percentage. That percentage shows you what your limits are. I also used this app to see when I should rest. For every 1 hour of high (red) energy activity I scheduled 30 Mins rest.

I used AYME's functional ability scale available here (PDF) to work out my limits. I now flit between 60 - 70% instead of stuck at 20%.

How can you help someone with chronic fatigue/ME?

1. Don't get mad at them if their not able to do something

2. Don't blame them for their fatigue

3. Don't make them do things/ push themselves it wont help

4. Do Give them space to rest and pace themselves

5. Do try to help them by splitting activities into small chunks with time for rest in-between

6. Do support them when their overwhelmed, support is so important

7. Don't assume that if they did something yesterday they can do it again today ( we wish)

8. Do stay friends with them, they don't like having to cancel on you and they need your support

9. Make sure they have food and water within easy reach (we tend to neglect ourselves when fatigue sets in)

10. You've already done it by reading this post. Understanding how we feel helps you to empathise with us.

As always thanks for reading, I hope this can help in some way whether you experience chronic fatigue/ME or know someone who does. Feel free to leave any questions or comments below.

Next weeks post is going to cover the Apps I use to manage my chronic illness' and symptoms, until then have a great week.

Laura:)

Spiritual self care

So this is the final post In my self care series, I must admit its been a challenge blogging everyday but its showed me my limits! if you have missed the start of my series you can catch the beginning here.

Todays post is about something very subjective, spirituality.

When some people think of spirituality they think of religion. If that's what spirituality is to you that's fine but it can mean lots of different things to different people. Its due to that that I cant say specifically how to care for your spirituality, do what makes your soul happy.

Go to church, synagogue, mosque, temple, meditate, talk a nature walk, whatever feels right for you. If that's not an option due to been stuck in the house, pray, write, read your holy book, meditate in the house whatever you can to take care of your spiritual side. Just because your physical and maybe mental health is bad doesn't mean you have to give up on your spiritual side

Well that's the end of the series, if you've read all the way through thank you so much for bearing with me.

You can catch the whole series through the links on the basics of self care post. As always take care of yourself and do what feel right for you. We are all individuals and as such our needs are all different.

My next post is going to be a review of cannabis oil and the vaporiser I have been using. I will post the link here when it is published.

Thanks for reading.

Laura :)

Social self care

Hi guys,

Todays post in the self care series is social care, if you missed yesterday's post on Emotional self care you can catch it here, if you would like to start at the beginning of the series here's The basics of self care.

So why is social self care important?

I don't know about anybody else but i have moments, sometimes days where i just want to hide in a cave and not come out. I don't want to see anyone, talk to anyone or be near anyone, i just want leaving alone. However there is then a real danger of becoming and feeling isolated, alone, lonely. As humans were sociable creatures, been isolated can make us unhappy, depressed and anxious.

Been chronically ill can make been sociable difficult. Pain can make us quiet and withdrawn, anxiety can leave us afraid of social interaction and fatigue can leave us not having the energy. That's all before we even get to the issue of having to cancel plans at the last minute due to flare ups / relapses  / down days. Luckily there are ways around this.

First of all having a small group of friends or even one friend that understands or at least tries to understand and doesn't get upset when you cancel is priceless. Hold onto that friend like they're a tub of  vegan ben and Jerry's and never let them go!

If you cant make big social events like parties (or they're too much) organise small events at a place where you know you will be comfortable and can manage if your condition worsens while your there. Invite those friends that are like gold and do something easy that can be quickly changed if needs be.

My favourite thing to do is invite one or two friends over to my flat and let them pick a movie or a DVD or netflix and get a takeaway in. minimum spoons used, no cooking or long conversations are needed and if i start to feel unwell as the night goes on i can lay down on my sofa, take meds etc... whatever i need to do. The upside is i get to see my friends and feel sociable, the downside is that they are having to come to me all the time.

If having people over isn't an option or you don't have any of those ben and Jerry's friends another option could be support groups. I go to a local fibromyalgia support group when i can and have met some lovely people who all understand , the comfort of shared experience is not to be underestimated. Been around people that have literally been there, done that and got the awareness t-shirt can be so supportive and encouraging. There are community support groups all over and a quick google search can normally find them. Failing that if there are any charities for your condition(s) they usually have a database of support groups. If there isn't one in your area why don't you start one?

Now if leaving the house isn't an option there's social media. There are lots of ways you can be social online. Twitter has a chat run by the lovely Tania Jayne (@whentaniatalks)  under @spooniespeak at 7pm every friday (GMT). She also has a blog (http://www.whentaniatalks.com/) and you can find lots of people to relate to using the #spoonie, #spoonieproblems, #spooniecult or hashtags for your condition(s). There are even spoonie netflix parties where spoonies arrange to watch the same thing over twitter and then comment on it together @spooniecult runs these and they are normally at 7:30pm (EST).

On facebook there are the invisible illness support groups, spoonie support line (to exchange numbers), spoonie support and then various support groups for different conditions.

I'm not very good on snapchat as i have not had it long so i don't know if there is any support there.

One things important, you don't have to be alone. If you feel like socialising there is someone out there for you to talk to, been able to talk to someone and knowing your not alone helps ease the isolation that can come with been chronically ill. It can also give you some awesome friends to help you through the tough times.

Again thanks for reading, feel free to check back tomorrow for the last in the series, Spiritual self care.

Have I missed anything? Do you know of other support groups, twitter chats or support that i've missed? Let me know in the comments.

Laura:)

Emotional Self Care

*Mentions coping methods and help if things are too much*

Emotional health is just as important as physical health but is often overlooked. It is important to care for your mental health and emotional self care is part of this. We can all get a bit down in the dumps with our illness, frustration and anger is common. Some of us also have chronic mental health issues alongside chronic physical illness.

Its also worth noting that a grieving process can follow every new diagnosis, its changing our lives again and again. We can grieve for our old lives and our old abilities. Lets face it its hard to cope with been ill. Even harder to face never getting better.

Some of us manage with the odd breakdown, some of us cope by using Unhealthy coping methods and some of us can not cope at all and their mental health is suffering as a result.

There are healthy ways to minimise the emotional stress been ill causes (and all the other stress too). Taking time out to look after your mental health is always important. It is particularly important during a flare up / relapse / down day or when we are feeling at our worst.

So stop. take a breathe and take some time out. I Journal each night, somehow writing out my thoughts and feelings allows me to process them then let them go. This Is a good option if you like to write and love stationary!! I bought mine from Paperchase for £12. If you struggle to hold a pen to write there is always livejournal, you can opt to keep your entries private. Of course there is always blogging. I started this blog as I wanted to help other people with chronic illness and also have a platform to express my thought and feelings on life.

Meditation can lower stress levels, (it doesn't have to be sitting cross logged humming OMMMMMM, but if that appeals to you go for it). Meditation can just be laying down, closing your eyes and listening to some relaxing music whilst focusing on your breathe. There's some great guided meditation videos on youtube and hypnotherapy videos for various issues. My favourite guided meditation is one for sleep where you visualise floating amongst the stars.

Bubble baths, the more bubbles the better. You get maximum points if your bubble bath has rubber ducks and / or candles. Lavender and chamomile based bath goodies are both relaxing and calming.

Have a long talk with someone you can trust, go spend time with people who make you laugh and forget about your problems. If that's not possible find a pet to cuddle, stroke. Don't have one, find one! (im not condoning animal kidnap). Animals make us smile, comfort us and stroking an animal is relaxing, theyre also great listeners as they never too busy to talk at! You can "borrow" some animals to stroke and talk to by volunteering at animal charities or rescue centres.

Volunteering is also a great way to support your own wellbeing. Giving your time to help other people or animals helps to lift your self esteem and keeps you grounded. Of course, not everyone's health allows them to do this but it's there for those that can. Check out doit.org for a (UK) database of volunteering opportunities.

Go outside. Sometimes just been outside and feeling the sun on your skin is enough to perk you up. Just 5 mins of fresh air, looking at the plants and flowers or weeds (there is beauty in everything if you look hard enough!) And hearing the birds singing is somehow soothing.

It goes without saying, if your mental health takes a turn for the worst and you feel you need help, seek it, there is lots of support out there and lots of other people who are going through the same things. See your GP, join a support group (either online or in person), talk to someone, a friend, family, Samaritans, counsellor. Don't keep it to yourself.

As always thanks for reading and hopefully this will help someone out there. Check back tomorrow for the next post in the series: Social self care.

Laura :)

Intellectual self care

Following on from yesterdays post about Physical self care, todays post is about intellectual self care. If you haven't heard of intellectual self care or don't know why anything other than physical and emotional self care are important check out my post on the basics of self care.

You don't have to be Einstein to look after your intellectual wellbeing. Keeping your brain active helps reduce boredom and in my experience can help with the dreaded brain fog.

Keeping your mind active also helps to pass some of the time if your stuck indoors.

There are many ways you can keep your mind active even if your stuck in bed and high on morphine.

For me, I like to learn new things. Take classes on Skillshare, my latest thing (as you can probably tell) has been learning about blogging. I also like designing new things out of fabric and then making them.

On bad days something as simple as listening to an audiobook can keep your mind active. I also like to watch videos on you tube that teach me something new like a new stitch or mini crochet project that I can do whilst been propped up in bed. Learning something new and then been able to put it into practice also gives a sense of achievement which is great for emotional wellbeing too.

Don't worry if your not creatively minded puzzle books, adult colouring books, reading, quiz shows can all keep your mind active and give you a sense of achievement.

If you want to try something new Skillshare is a platform for lots of online classes. Some are free, some you have to be signed up to their paying account to access. There's also adult learning classes in most towns in the UK that can cover a wide range of topics. I've been to henna, healthy cooking and nutrition classes, they're usually quite cheap, even more so if your on any benefits.

If you decide you like learning you could always take it further and enrol in The Open University. Ideal if you wanted to go to university but your health stopped you. They take all ages and if you've not had student finance before you can apply for student finance to pay the tuition fees.

Whatever you do it has to challenge you, make you think and keep you interested. Most of all it has to be right for you.

Do you have any ideas how to keep your mind active? What would you like to try and learn?

Thanks for reading. Make sure you check back Tomorrow for the next post in the series, Emotional self care.

Laura :)

Physical self care - looking after your health and wellbeing when your already ill.

This post is following on from my basics of self care post yesterday, if you missed it you can find it here. Physical self care is probably the most thought of form of self care. It's also the one that needs adapting around flare ups/ relapses/ down days the most.

One day you may be able to do some yoga, eat 3 healthy meals, drink 8 glasses of water and take your meds.  Another day u may be able to take meds, drink some fluids and manage some stretches from your bed.

Both days count, your making a conscious choice to do something towards your physical health and wellbeing. This post isn't intended as medical advice and shouldn't be used as such it is just based on my experiences and ideas.

Move

Exercise doesn't have to be running a marathon. It can be as simple as stretching or moving whilst carefully engaging your muscles. I've found I can manage 3 mins of very basic yoga stretches 90% of the time. Just been in a swimming pool whether your swimming or not gives your joints a break as your weightless, just moving in water burns extra calories. On bad days stretching may help to keep the stiffness away and keep what mobility you have. If you have physio and can manage to do your exercises do those. Whatever movement you can manage to keep your joints and muscles going.

Gulp

Fluid levels are really important! Your body needs it to function. Aim to drink 2L a day, if you have POTS or some other condition requiring more fluid than normal you may have to aim for 3L. I find if I always have water on me everywhere I go I'm more likely to drink enough. fizzy drinks and fruit juices don't count as the fluid content is low and they are high in sugar.

Eat (If possible)

Food is hard for me. During a flare up of my fibro or ME/CFS I crave carbs and sugar. My mind tells me I need good nutrition to get out of the flare, anti inflammatory and energising foods etc. My body says eat ice cream and cookies for breakfast lunch and dinner.
I forgive myself if I go a bit mad but ensure I have at least had a proper breakfast and eaten some fruits and vegetables. Tomorrow's another day where I can try and make better food choices. I've found that ginger tea can help with nausea and peppermint can help with digestion and ease IBS symptoms.

Snooze

Sleep. What's that!!??

No seriously!?

Ok if your lucky enough to know what that is it 8 hours used to be the recommended amount. The typical advice now is 6-8 hours. Some people need less sleep due to their metabolism. I need about 10 hours as I struggle to enter deep sleep. 10 hours sleep normally gets me 2 hours deep sleep if I'm lucky.

It goes without saying lack of sleep can mess with everything, not just your physical health. If you really are struggling to get any sleep you may want to speak to your GP about some short term solutions to get some relief.

I don't know of any long term solutions to improve sleep but here's a list of things I've tried that have made some (if unpredictable) improvement:

*Clary sage and lavender aromatherapy
*kalms herbal remedy for sleep
*zoplicone (prescribed med)(v. short term as addictive)
*Cannabis oil (100% legal)
*Chamomile tea and radox bath.
*amitryptaline (prescribed med)

I also track my sleep using sleep for Android and I use relax melodies to help me get off to sleep. There are probably equivalent apps for iPhone and windows phone users.

If your sleep deprived but still cant sleep, schedule rest periods where you take some time to relax. This is especially important if you suffer from fatigue or are in a high stress environment/time.

How do you look after your physical health? Do you have any ideas or suggestions for physical self care? Let me know in the comments below.

As always thanks for reading, pop back tomorrow to catch the next post in the series covering intellectual self care.

Have a restful (if possible) day.

Laura :)

The basics of self care.

Spoonie self care

This week I'm going to be covering self care, I'm currently having a flare up of my ME/CFS so I'm writing this post at quite an apt time over several days. Todays post is covering the basics, over the week I'm going to cover each area in more detail with more ideas for adapting to good days and bad days.

I spent two years learning health and social care at college when I was younger. That taught me the basics of how to care, nurture and support someone's health and wellbeing. I then went on to spend 10 years working in the health and social care sector where I put this into practice again and again. I'm now going to apply that to nurturing my own health and well-being and hopefully help you to do the same.

So the acronym we were taught was P.I.E.S but I think an extra "S" is needed. PIES stands for:

Physical

This is nurturing your physical health, for those with a chronic illness this could be as simple as ensuring that you have taken your medication, eaten properly, drank plenty of water and completed  your Physiotherapy for the day. This can also include exercise (if able) and anything else that you may need to do to look after your physical health.

Intellectual

keeping your mind stimulated. Read or listen to audiobooks, learn new things, take classes, complete puzzles, write, anything that keeps your mind busy. Remember that your brain is a muscle and also needs exercising. Spoonie life can be boring, this keeps things interesting.

Emotional

This can be a tough one for a lot of people especially those with disabilities who can have mental and physical issues. Counselling, journaling, crafting, getting out of the house, been around nature, cuddling pets, taking a bubble bath and chatting to a good friend can all help nurture emotional wellbeing. Emotional ill-health is just as serious as physical ill-health and should be treated as such. There are symptoms which are called "psychosomatic" these are physical manifestations of psychological issues like hair loss and rashes when stressed or a twitch when nervous.

Social

Pain and fatigue can make you cranky, anxiety can make you want to build a fort and never leave but its important to maintain contact with the outside world, even if your fort is amazingly comfy and you need a "warning, approach with caution!" sticker on your head. This doesn't have to be going to a massive party and talking to everybody you see! It can include social media chats like #spooniespeak or @spooniecult on twitter, support groups on facebook, having a Netflix and pizza party with your closest friends or simply making time to call your family and friends for a chat once in a while. Of course if you have the energy and confidence to go to a massive party and chat to everyone go for it! Its about what's right and feels comfortable for you.

Spiritual (The added "S")

This doesn't have to be in the traditional sense of the word. This can be anything from prayer to meditation or even spending time appreciating nature or animals. Watching a sunrise or sunset can be a spiritual experience for someone. As hippy as it sounds whatever makes you feel at peace with the world can take care of your spiritual needs.

Self care should nurture each of these, it doesn't have to be all of them everyday, but as long as they are all covered in some way you can take some control and responsibility over your own health and wellbeing. You can do as little or as much as you can. Adapt your self care to how you are feeling and remember you are important make some time for yourself.

As always thanks for reading. Each heading is now linked to each post from the series.

Laura :)

Bubble t (bath infusion tea bags) review

I love baths, despite the risk (for me), they relax my muscles, relax my mind and always feel like I'm pampering myself. For me they are an important part of my self care. I recently splashed out a bit in Superdrug and amongst my haul were these bubble and T tea bags.

They smell amazing and come in such funky packaging. I only found one option in my local Superdrug, the summer fruits tea. It's said to smell of raspberries, strawberries, blackberries and white tea. It really does. Online they have bath pearls, fizzies and a body spray in the same scent.

Each t-bag contains bath salts and the bags themselves are made of a breathable fabric with "don't drink me" printed on the front. This may seem obvious (to those with self preservation instincts) but the look and smell of the bags really smell like berry herbal tea to me.

You chuck one in warm water whilst running your bath and leave it there until your done. I tried one and it made the bath and the rest of the flat smell amazing.

I was a little disappointed that there were no bubbles, I have the brain of a 5 year old so I love bubbles! At £3.99 for Ten bags It was also a bit pricey. However it did leave my skin smelling just as amazing as the bathwater. I can't emphasise how gorgeous these smell.

Finally I found that I could reuse the empty bags by removing the staple and filling them with lavender and chamomile flowers before stapling them up again. Amazing for future herbal baths and recycling, y'know saving the planet one bath at a time.

That's it on these beauties, they're a really simple idea that smell gorgeous and can be a nice treat for yourself. The packaging looks pretty and is quite funky, but they are a bit pricey and despite the name no bubbles :( I would like to try out the other varieties especially if they made bubbles!

 

Do you have any bath time favourites? Let me know in the comments below..

 

As always, thanks for reading.

Laura :)