Clubbing in a wheelchair

So on Saturday I attended a friends hen party. This was something I thought I would never be able to do. I decided I would try in some way to attend. After a month of planning, my husband and I had sat down and thought of a plan of how I was going to get to her house, then to town, into clubs and then home again, safely, cheaply and without compromising my health or wellbeing. We decided I would go out in my power chair as this would give me the most mobility and independence whilst out and that i would need a wheelchair taxi.

Next came finding a comfortable and wheelchair friendly outfit, so I had mid waisted trousers on as a skirt or a dress in a wheelchair just doesn't work for me, I had a top that consisted of several layers so I could remove layers as needed to control my temperature, it's cold outside in the UK at the minute and I overheat inside. we decided on a cross over jacket type thing as it crossed over at the waist hiding my stomach and was mildly elasticated at the bottom meaning it stayed in place around my waist instead of riding up my back. I struggle with Raynauds in my hands and feet so keeping my feet warm but stylish was a priority. I settled on my glittery black diamante high tops and thick socks. Basically the outfit below (obviously this is not me) Tops from next and jeans were mid waisted supersoft jeans by F&F at Tescos. They were so comfy even after 7 hours in my chair. My hightops (below) were from matalan.

  

I struggle with keeping my hands above my head or up for any length of time and with manual dexterity in my hands so i used clip in hair extensions and styled them in my lap to make it easier, then all i had to do was clip them in with a bit of help

The end result before i changed into my outfit.

Once i knew i was going out in my chair and what i was wearing it was settling on a plan and a back up plan to get there and to get into various bars and clubs. I did some research, every time I had to go into town i made a note to look at the entrances of bars and clubs to see if i was able to get in. I pre booked a wheelchair taxi to get from my friends house to town and back again. This was handy as the one that arrived fitted the rest of the girls in so I felt included. Once in town I hit a snag straight away, I was so sure one of the bars didn't have a step I didn't bother to look, turns out it had a step just a bit too high for my chair to climb so that one was out of the question. we went onto a pub and the main entrance wasn't accessible, my friend went in to ask if they had a ramp and it turns out they had an accessible side entrance that wasn't signposted.

After this we found a small bar with cheap drinks, good music and level access through the front, the only snag was that the women's toilets were upstairs. The staff at this tiny club were so accommodating they cleared out the men's, cleaned it and stood obstructing the door so I could use the stall. It wasn't ideal but it worked. After this we went to a larger club. This was a chain of restaurant/bars called revolution, they had level access, disabled toilets and a lift up to the disco hall.

All in all I had a great night and found the bar staff and door staff to be really helpful and accommodating. Ill be honest Ipswich is a medium sized town but I don't think they had seen many disabled women wheelchair dancing so that's a first. The point of all this is if there is something you want to do there may be a way of doing it, it might not be straightforward or easy but it may be possible.

The aftermath

So if any other spoonies are reading this you may have noticed i said 7 hours, yes i was out in my chair for 7 hours! The following day i couldn't sit up without everything spinning, low blood pressure, tachycardia and nausea. I tried to move and quickly realised my whole right side from my waist downwards had seized up, i couldn't bend my leg or move it. Sooooo i spent the whole day lying down with a heated blanket over my right side and salty snacks and fluids to calm the POTS down. I'm expecting the fatigue and right sided stiffness to continue all week but it was worth it.

As always thanks for reading, feel free to leave any questions or comments below.

Laura :)

Managing pain

Following my last post on Managing Medications I thought I would write about managing chronic pain. I have fibromyalgia and Ehlers-Danlos syndrome amongst other things so I'm no stranger to pain!

I tend to use a pain scale to judge how much pain I'm in and then decide on pain relief accordingly. At this point I'd like to mention I'm no doctor. I'm just sharing my experience of managing pain.

The chronic pain scale. Unsure of source

Anything between three to five is a good day and normal for me. To be more comfortable day to day I utilise things like epsom salt baths, cannabis oil (you can read my review here), heat packs and I use orthotics on my most troublesome joints such as my wrists, knees and hands.

Between 5-7 I use things like hot/cold therapy topical pain relief like muscle rub or ibuprofen/diclofenac gel. Over the counter Medications like paracetamol and ibuprofen (careful not to use two of the same Medications at the same time. E,G. Ibuprofen/diclofenac gel and ibuprofen tablets.)

7-9 I use prescribed Medications such as naproxen and tramadol 10+ I have oramorph 14+ is a hospital trip for me.

It's worth knowing that if you have exhausted all your pain relief options to no effect and haven't taken paracetamol, if you can, you should. This is because paracetamol works like a stepladder for other Medications enabling them to work better.

A doctor in A&E told me this when I had gallstones, Because of my chronic pain I'm tolerant to most pain killers and they began to run out of options so started me on an IV of paracetamol alongside the morphine and entenox  (gas and air).

Coping emotionally with pain is a different matter. It's important to have a good support network and healthy coping methods. I'm lucky to have a good support network both at home and online. I also use journalling to express the anger, frustration and hopelessness that comes with been in pain everyday. I did a post on emotional self care a while ago, you can read that here.

Do you have any questions or tips on coping with chronic pain? Feel free to leave a comment below.

As always thanks for reading.

Laura :)

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:)

Conscious Crafties

So this week I was fortunate enough to be accepted into Conscious Crafties.

The Chronic Comforts store has been set up, there's not much listed at the moment but its growing day by day. You can have a look here:

https://www.consciouscrafties.com/Crafties/chronic-comforts/

Conscious Crafties Is a lovely, friendly community of people with chronic illness' or people who care for those with Chronic Illness' to sell their crafts. It goes further than an online store. There's a supportive community where crafties can find support, advice and creative genius. It's all the brainchild of karen thomas a lovely lady and a spoonie  herself, here's what she has to say about why she founded Conscious Crafties:

How was the idea born?

Karen Thomas
Conscious Crafties Founder

Hi there, I'm Karen and after becoming sick in 2011 almost overnight, I found my way to various support networks. I noticed we all shared the same sense of loss, we'd lost friends (because not many stick around when you have to let people down at the last minute), some of us had lost jobs (due to being unreliable) and the biggest thing that hurt deep into my soul was the overwhelming loss of purpose, we all felt useless. I desperately wanted to make that better. So in 2011 the idea was born to create a community for everyone to showcase their talents in one place and give people a way of creating their own businesses. It was also a way for me to feel useful again, by using my skills to help others. Conscious Crafties is about empowering us all to be successful, tell our stories and meet new like minded friends who understand our struggles. I'm also hoping it plays a key part in changing the way Disabled and Sick people are viewed by the world. We can still contribute and are incredibly talented!!

 

My Beautiful Friend Sam

Conscious Crafties has been built in honour of Sam, my beautiful friend I met through sickness and our love of crafts. Her strong fight with Gastroparesis and POTS sadly ended in Oct 14. Heartbroken, I knew then, after years of thinking about it, the idea for us all to sell our crafts and skills within a supportive community needed to be launched, so it could help people NOW and give them hope for the future.

Karen has been so patient with me and has supported me to open my Conscious Crafties shop. The whole site has tidbits of advice at every stage and well thought out timesaving features all designed to save you some energy. Ive only been set up 3 days and im already making friends.

Once you list a product the "techy magic" on the site posts it on social media to get your products seen by a wider audience.

I've been amazed at the wide range of skills and talents there are, from artists to wood burners every kind of art and craft is welcomed. You can apply to become a Conscious Craftie here

Or buy something from a talented disabled person or carer here.

As usual any questions or comments just let me know below....

As always thanks for reading,

Laura :)

Unplanned trip anxiety!

I'm been brave this September.  I normally don't go anywhere without my trusty rucksack armed with all kinds of things to help me with heat intolerance, cold intolerance, pain, dislocations, asthma and more. Even with all that I Then have to know where I'm going and know where toilets, disabled accessible facilities are and have a plan B for everything.

I think this is typical for most with a chronic illness. Either that or I'm just an anxious control freak! It now comes naturally to me to go out prepared for almost anything my body can throw at me. This enables me to enjoy myself, relax and know that if anything happen I wont have to go running home or ruin the day.

All this goes out the window when I have to go somewhere I don't know. My dad has planned a suprise trip for me. It's a lovely exciting idea BUT it's left me quite anxious. I don't know where we're going. I've to turn up at my Dads house on a specified date and time and he will hand me information about where I'm going, a postcode for my satnav and booking information. All I know is its camping and its for 4 days.

I don't know how far a drive it is, if there's blue badge parking, how accessible places I may need or want to visit are. I don't know if there's pharmacys or doctor's nearby. I don't even know where I'm staying.

Will it be big enough for my power chair?

Will it have accessible bathrooms?
Will there even be somewhere to charge my power chair!?

Will I be able to make myself comfortable and give myself some self care if I have a flare up?

What activities will I be able to participate in?

Will attractions I want to visit be accessible?

I have to be brave and put trust in my dad that he knows my needs well enough to have thought of all this. But then there's the other issue its CAMPING- I'm extremely sensitive to temperatures, too hot my POTS doesn't like it, too cold my Raynaud's and Fibromyalgia doesn't like it. I cant exactly have air conditioning or heating in a tent. My air bed is not that comfy and I wont have a sofa to lay on if I'm having a bad fatigue day.

To tackle this I'm taking lots of pillows and blankets so I can make my own nest of comfy to crash in, this will also help if it gets cold. I hope the campsite has a pool so I can cool down if its too hot. Once I know where I'm going I can do some research and find some places to visit or activities I can do. Whatever happens its my holiday and I'm determined to enjoy it.

It made me wonder how many other spoonies out there have anxiety around unplanned / unexpected trips? Am I the only one?

Of course once I get back I will post about how I got on and how I survived!

As always thanks for reading,

Laura :)

Orthotics appointments and support braces

I'm not doing too well this week so please excuse the dodgy photos! If your in the same boat check out my series on self care.

Here's my experience with orthotics and support braces:

After been diagnosed with Ehler Danlos syndrome (hypermobility type) my next Physio appointment went a little differently. I informed her of the new diagnosis and she proceeded to check my joints for hyperextension. I never realised what my joints did wasn't normal until this point, apparently your knees are not supposed to bend backwards and your wrists aren't supposed to rotate 360 degrees : who knew?!

Cut a long story short my GP referred me to Orthotics for some knee and wrist braces.

At My first appointment the Orthotist asked me to hyper extend my joints and to try and walk ( I wobble at best even with a stick) and then move my wrists in all directions to see what was needed and where. He decided that I still had good muscle and joint control in my left knee but both wrists and right knee were quite bad. I was measured up and a second appointment was made.

At my second appointment I was given two wrist braces and a knee brace, the Orthotist showed me how to put them on and checked their fit and suitability.

This is a Medi knee support, its comfortable but refused to stay in place on me, it didn't matter whether I wore it over clothes or on bare skin it would always wiggle down and be really lose around the top. They have wedges on the side that can be removed if more or less support is needed over time.

These Beagle standard wrist supports were ok, they have a metal rod to support the wrist on the underside which can be removed so they can be washed. The only problem I found was that the pressure of the strap between my thumb and finger was too uncomfortable for me.

Because of the problems I had with this first lot of orthotics I had a follow up appointment and was given different wrist and knee braces:

Osso form fit wrist brace



Townsend knee brace

This brace was less comfortable and not as supportive but stays in place. I suppose there's no point having a comfortable supportive brace if it doesn't stay where its needed. The wrist brace is more comfortable than the last and has a cotton mesh on the inside making it breathable. It cant go in the wash but it feels much more supportive than my other wrist braces. These were more expensive so the Orthotist wanted to try me with the Osso one on my right wrist and keep the Beagle one on my left wrist rather than supplying me with one for both wrists.

So far so good. I tend to wear my knee brace when I know I will be wobbling about the house all day or not using my power chair and my wrist brace when I'm using my hands a lot like crafting, writing or when they hurt. I avoid wearing them all the time as I want my muscles to keep the strength they have but at the same time want to prevent any deterioration in my joints. Its a balancing act.

Any questions? What orthotics if any have you found useful? Comment below

As always, thanks for reading,
Laura :)

Check back next Sunday for my post on anxiety around unplanned events.

Cannabis oil vaping for chronic pain.

So after all the hype that followed the medipen release I found myself curious. I wanted to know could cannabis oil really help my pain, fatigue and insomnia?

I did so much research on why cannabis oil was different to the cannabis that's normally smoked and the science behind it. I tried to research the disadvantages as well as the advantages.

For the basics check out:

https://www.organicfacts.net/health-benefits/essential-oils/cannabis-essential-oil.html

The downside is you don't know how your body may react to it, your other medications may interact and the stigma, as soon as you say the word cannabis it conjures up images of spliffs. In the UK cannabis is illegal. Luckily cannabis oil isn't. Finally It goes without saying:

!!!! Please don't try any new treatment or medication  without consulting your doctor first!!!!!

I couldn't afford the £49.97 for a Medipen starter kit and £24.97 for refills so I set about looking for a cheaper version.

I found the CBD king starter kit for £28.99 on amazon. It arrived within 3 days despite the delivery estimate putting it at 5-10 days.

It was fairly easy to work out and the vaporizing pen  came with a charger, two cartridges and a metal storage case. I don't smoke so inhaling took some working out too but then I was off.

I found the best way to use it was to inhale 3 short puffs of about 2-3 seconds three times a day. I then had more short puffs if I felt my pain levels increase. This is what worked for me but you may want to experiment to find what works for you.

I've been using it for 2 weeks now. My pain is still there (it's not a cure) but it seems to lessen it. The most positive effect I've found is that I'm less anxious and sleeping better. I can't say I've noticed any improvement in my fatigue but it's not deteriorated either.

After a few days one of my cartridges stopped working. I contacted CBD king and they responded the next day and sent me a replacement out and a free cartridge no questions asked. The Strawberry and custard flavour is amazing and so is the lemon and lime.

In short I've found cannabis oil has helped my anxiety and insomnia and has lowered my pain levels. I'd recommend CBD king as their pen is the same as medipen and their customer service is amazing.

Do you have any questions or Have you tried cannabis oil for chronic pain or other illness' have you found it helped?

As always thanks for reading,

Laura :)

Disclaimer: I was not paid for this honest review I just really liked the pen and the company.

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 :)