Tuesday, 26 October 2021

Audiobook pro's and con's

A tanned woman with dark hair wearing a white top she is holding a white mug and is wearing white headphones

Some people prefer the tangible feel of a book but now audiobooks are becoming more popular and now with greater availability of audiobooks more people are preferring to listen to books instead.

For some people audiobooks are a preference but for some it's more a matter of accessibility and with more audiobooks being available this is a positive.

Personally audiobooks for me are more a case of accessibility though I am trying to get back into reading. I have dyslexia and Scotopic Sensitivity (aka Irlens Syndrome) so I find text on a white page hard to read. I also find it hard to concentrate and find written text hard to process so for me I do find audiobooks much easier compared to reading though I do miss reading.


Audiobook pro's and cons

Pro's

As I mentioned audiobooks are more accessible especially to those with visual impairments or have difficulty with written text.

Audiobooks are more portable as you can download them onto places like your phone. I know for me I find this helpful for when I'm travelling or in hospital.

I find just like with books you can get lost in listening to an audiobook and with audiobooks when you're listing to them through headphones you can shut out more from what's going on around you.

Audiobooks can be very relaxing and I find them a great low-key activity.

You don't have to find storage space for all your books (though I do love the look of  rainbow stacked book shelves).


Con's

Not all books come in an audio format.

Sometimes the narration or the voice of the person reading of the book isn't that good and sometimes I find that can spoil the imagination of the book or it can be off-putting.

Cost, when I first started to access audiobooks to buy the CD's they where quite expensive and now cost wise it's the cost of audiobook subscription services


For those who are blind, partially sighted or have a print disability*

RNIB and Calibre do have a free audiobook library - RNIB link here, Calibre link here).

*Print disability may include conditions such as dyslexia, Irlens Syndrome/Scotopic Sensitivity or other conditions which makes reading text difficult such as M.E/CFS, MS, or a brain injury as a few examples.

Tuesday, 12 October 2021

Reducing your screen time & online wellbeing

Blurred image of a woman who is olive skinned and has blonde hair and is wearing pink lipstick and a striped top the photographed is focussed on the mobile phone in her hands
Your phone can be a great thing and these days you can do so much with your phone and tablet and for some people they spend most of their day looking at their phone or tablet but is this healthy? I also recently watch a Channel 4 Dispatches on the environmental impact of our online lives (link here).

Personally I can say for sure that I'm not addicted to my phone or social media. I can go for days without checking in on Instagram and I can put my phone down and leave it (and then forget where I put it!). So I would say that I'm quite good with controlling my use of my phone and iPad and even my Apple Watch despite it being there on my wrist most of the time.

I'm not an expert but these are just some of my tips to reducing your screen time and having a better relationship with technology.


Be mindful when scrolling

This can occur with any app but mainly when using social media apps. Notice when you're spending too long on a particular app or if you're just mindless scrolling out of habit rather than with purpose. Try to set an intention when you go on an app especially social media; this may be to share a post, message a friend or check out a couple of friends profiles and leave it at that. Also be mindful of what you post and think before you click for example "do I really need to share this photo or share this comment?" Also remember that what we see online is just the tip of an iceberg and we don't fully see what is going on i other people's lives; it's a bit like the news where we only see or read what is being reported.


Set up your screen time settings

Photograph of a phone screen with a graph displaying screen time usage
One of the things I've found really helpful for me is setting limits on certain apps and setting up my screen time and down time settings (this may vary depending on what type of smart phone you have.

First of on certain apps I've set a limit on how long I can spend on that app each day, so for example with Instagram and Twitter I limit myself to 1 hour a day. Usually I don't spend as much time as that on Instagram but when I do it helps to reduce how long I'm on my phone for.

Also on my phone I have screen down time setting so between 8.30pm and 8.30am the vast majority of my apps I can't access and I've just limited myself to essential apps only during this time. I've also done a similar thing with my contacts so during my down time I can only contact or receive texts and phone calls from certain people.

Doing this especially helps with my sleep as I'm not getting disturbed when I'm trying to sleep or I'm not tempted to scroll through Pinterest when I should be settling down for bed.


Take a break from social media

Another thing you could do is take a break from social media by temporarily turning your account off and/or deleting the app from your phone or tablet. Sometimes taking a break can be quite liberating, even if it's just for a week and it will give you more time to engage in other things. This might also be good for your mental health as so often we are wrapped in in reading and seeing photo's of other people's lives that we forget about our own lives or we spend ages trying to take that "perfect photo" to share online that it becomes mentally unhealthy.

If you do take a break from social media try to set some goals for your own wellbeing like taking up a new hobby or start engaging in mindfulness meditation or meet up with a friend for coffee rather than virtually socialising online.


Revise who you follow and what groups you're in

Look at what groups you are in online and think about whether you still want or need to be part of that group or look at who you follow and think more about what you want to get out of social media. Think "is being part of this group or following this person good for me?" and often quality is better than quantity. Personally I think it's better to be part of fewer groups and follower fewer people is better and then you can get more out of the groups you are part of and the people you follow.

For me revising what groups I was in and every-so-often revising who I follow has been really helpful. When I first became unwell I joined a lot of chronic illness groups and followed others with chronic illnesses and for a while it was good to be surrounded by others who understood what I was going through. Over time however I started to find these groups a little toxic; some members would be in competition to be 'the most ill', or have the most diagnosis' or be on the most medications or people would unhelpfully compare medications and symptoms and illnesses. I began to realise that these "support groups" weren't supportive at all and leaving them and Facebook was the best online thing I've done. I now just stick personally to Instagram mainly and even there I've revised who follow. Yes I do follow others who are chronically ill, some of whom I've become friends with but I try to follow accounts where there is a healthy balance. For me I choose not to follow people who solely post health related content; for me I'm not interested in photos of pulse oximeters or a bag of saline on a drip stand etc. Again I find with these types of accounts I find some people want to be 'the most ill' - like I one had a friend request (which I declined) and I remember on their bio in bold capital letters they'd put 'seriously chronically ill'. For some they may wish to follow these accounts and that's fine and for some they may want to share about their illness but being chronically ill or disabled isn't a competition and it can be quite unhealthy. There's a documentary about the chronic illness community and I know it's had a lot of controversy but I found it insightful to watch and I did find it relatable in some ways (link here). 


Photograph of an iPhone with the phone's switch off option on the screen
Switch your phone off or leave it in another room

If you're able to, maybe for an hour a day switch off your phone or put it away and engage in something else, maybe read a book, do some crafting, write s letter to a friend or enjoy being outdoors - anything that doesn't involve screens and technology.

Tuesday, 5 October 2021

How I blog as a chronically ill blogger

patterned border around a photograph of a bullet journal page headed with the title blog post ideas with below a list of hand written notes
Blogging when you have chronic health problems and disabilities can be a little tricky at times but it can be possible to do and I love blogging (hence why I'm still going with this blog three years on!) - the main thing is to be organised and plan!

My secret to posting weekly is that I have a whole bunch of pre-typed blog posts that I auto schedule to post and often I'm months ahead of myself which is so helpful as if I didn't do this with the unpredictable nature of my health I could and have gone through periods where I haven't been able to type any blog posts for a few weeks, so knowing that I have everything lined up is very reassuring.

I like to blog on a variety of topics; not just disability content as after all my health is only one portion of who I am and there's lots of other things about me that I like to share with you. To ensure I get variety in my blog posts and to try and get some balance between health and non-health posts when I have my pre-typed finished posts I mix around the topic areas on the auto-scheduling. (My blog may look neat and tidy but behind the scenes it's much more chaotic with finished and draft posts; thankfully I can tidy it up and view draft posts or scheduled posts etc).

navy patterned border around a photograph of a bullet journal page the title on the page is hand lettered and colourful and reads post it not planning and there is a pale yellow post it note with some hand written notes on

To help me write posts I've started a bullet journal where I keep blog post topic ideas (and those for my YouTube channel). I've found since doing this it's really helpful as I (a) don't have the draft loads of post ideas with just a title as the title is in my bullet journal and (b) I can plan in my bullet journal with key points I want to include in my blog post as well as research as where possible I like to include quotes, research, organisations or helplines for readers to go to if they wish to find out more or want to contact a helpline.

Then as well as the posts themselves is having an easily designed blog. The Blogger theme layout on my blog I feel works really well for me. It has changed over time though since I got and illustrator to design my header I've kept the main design of my blog the same. Then there is the side bar, again this has seen a few changes, mostly as I work out what items work best where and also as I discover how to do new things. You may also notice that I have an accessibility widget with features to change the accessibility of my blog such as changing the font and it's size or adding a reading ruler. I like to be as accessible as I can and I'm the same with my YouTube videos where I always include subtitles and CC.

So, my main points for people with a chronic illness/disability who would love to start blogging are:

 Have a notebook or bullet journal or something similar to note down ideas for blog post titles, points on what you want to include your blog post - this could be a list or spider diagram, whatever works best for you. (I also find colour coding helpful.) Also include research in your notes such as links to articles or organisations for example that link to your blog post. I also find planning helpful with my dyslexia.

 Post in advance - rather than writing week-by-week write your post here and there is you're not able to write a whole post in one go and then once the post is finished schedule it to auto post. This is how I create blog posts and I bank up posts to the point where I'm more-or-less able to share posts on a weekly basis.

 If you want to post for a particular event do the same above, sometimes I've written awareness event posts months in advance.
Work out what you want your blog to be about - a disability blog, a fashion and beauty blog, a journal blog , a recipe blog or a blog about all aspects of who you are and what interests you.

 Find a blogging platform that is best for you, I have no affiliation with Blogger but I've just found that it's the best one for me. A while back I did switch over to WordPress but I struggled to navigate it so I came back to Blogger, but for you WordPress or other platforms may work for you.

 Don't buy a domain straight away - wait and see how much you get on with blogging before you purchase your own website domain and maybe even longer to attach an email to your blog.

 Have a design layout of your blog that works for you. I find that keeping is simple is best and let your posts do all that talking.

 Also be aware of accessibility, this could be the colour scheme or font you're using. Places like UserWay offer a free accessibility widget (this is what I have on my blog). Also ad alt text or image descriptions to images.

 A lot of putting together my blog from post ideas to how to set-up certain things like social media links or 'how to do ...' comes from searching on Google and YouTube.

Don't put pressure on yourself. Blogging has to be something that you enjoy doing; you don't have to blog regularly or always write long detailed posts.

Tuesday, 28 September 2021

Living with chronic pain - Pain Awareness Month

I've lived with being in pain for so long now that for me being in pain is normal and I've forgotten what it feels like to not be in pain. Pain as a symptom is a key component in all of my physical chronic illnesses. I experience many different types of pain including joint pain, neuropathic/nerve pain, muscle pain, headaches and migraines, bladder pain and gastrointestinal pain. Then there are different types of pain that I feel - a dull ache, spasms, cramps, tingling pins and needles, a sharp stabbing sensation, griping, throbbing, and crushing, head pain during a migraine to name a few. Sometimes my pain is just there in the background other times it can be an acute onset of pain for example due to a joint dislocating.

One of the big problems when it comes to pain is the with my neurological disorder, FND, as it is a result of the nervous system not working and a fault with the brain's messaging system in my brain the signals for pain remain switched on to the max even when there may not be a reason for me to be in such high levels of pain. I then experience a wide range of chronic and acute pain on a constant basis for all sorts of reasons as pain is one of the key symptoms that come with my different illnesses which doesn't help the the mixed up pain signals that comes with my FND. This means that I really have to be on-it with managing my pain utilising skills such as distraction, mindfulness, using my hot water bottle/heat pad, my acupuncture pen, TENS machine etc. I always try and use pain relief medication as my last option and then I will slowly step-up what I take, the only exception is in the case of severe acute pain where I need to take some sort of pain relief immediately.

Living with chronic pain can be hard especially on my bad days as I'm wanting to distract myself from the pain but I'm unable to do so. As well as that often when I've over done it or 'done a big thing' this will trigger my PEM/PENE* which will flare-up my pain along with my other symptoms.

Illustration of a woman inside a box with her arms and head sticking out the box. The box is labeled fragile. Text reads 'be gentle with me'.
©yourachingart_me
Chronic pain can also be pretty unpredictable and I can never plan for when I'll be in pain beyond my baseline everyday level of pain. The question of how much pain I'll be in and for how long I'll be in pain is something I will never know. I take various different medications to help manage my pain. I prefer to use the term 'pain relief' as that is what medication does, it doesn't kill or eradicate my pain, only bringing me a level of relief so that I am to a certain degree able to function and get through the day and the pain despite being in pain. 

It's hard to try and comprehend to explain to others including medical professionals, even those in my pain management team what it is like to constantly be in pain. Constantly being in pain affects me a lot, not just the physicality of being in pain or waking up at 3am with a raging migraine or having my bladder spasming so bad that I'm double bent and curled up crying struggling to syringe up some pain relief and turn on my heat pad. It's the emotional impact of being constantly in pain that I feel wears me down the most because the pain is so relentless and you become 'sick and tired of being sick and tired'. Those are the difficult days when you know you're 28 and you wonder if this is it for the rest of you life. Other days I feel more hopeful and able to cope with my health problems and associated pain.

I've found my appointments with the hypermobility pain team helpful and what I've learnt in these sessions I can apply to my other illness a little and hopefully (or one day) I'll see a neurologist from the migraine clinic which I'm really will happen (my referral is somewhere in space due to the pandemic). In the past I was under a local pain management service but they were as helpful as a chocolate teapot! My other symptomatic pain from my other illness and co-morbidities are also slowly getting sorted.

I know the pain will always be there to some degree but it's learning to live with an manage it. I know I will have my difficult days when I feel like I can't cope. Planing, pacing, activity management and regular rests help me to keep on top of my symptoms including my pain but it's journey to learn how to live alongside chronic pain.

*PEM - Post Exertion Malaise // PENE - Post Exertion Neuro-immune Exhaustion

Tuesday, 21 September 2021

Craft tutorial: Zig-zag card

This month's make is a zig-zag card. You could make this as a mini scrapbook to give to a friend with scrapbook elements such as photos and things like ticket stubs etc. Alternatively you could use a co-ordinating card making collection to decorate your zig-zag card. In the photograph below ⤵︎ of the zig-zag card I've made I've used a co-ordinating scrapbook collection that came with co-ordinating papers, elements and stickers.


Difficulty rating: ★ ★  ☆ 

What you will need:

  • 3 pieces of card (around 300gsm to give your card enough stability)
  • Precision paper trimmer
    • If you don't have this you could use a ruler and craft knife on a cutting mat
  • Scoring blade on your paper trimmer
    • If you don't have this you could use a scoring board or a ruler and scoring tool
  • Ruler
  • Pencil
  • Scissors
  • Eraser
  • Paper creaser/boning tool or a ruler will be fine if you don't have one
  • Medium thickness (around 1 or 1.5cm) double sided sticky tape
  • Glue - quick drying craft glue and also a glue stick
  • Things to decorate and embellish
    • Patterned, plain paper and special effect paper
    • Washi tape
    • Stickers
    • Die cut elements - bought or ones you can make yourself
    • Card toppers
    • Stamps
    • Sentiments - stickers, stamps, die cut, card topper ones etc
    • Scrapbook items
    • Plus anything things else you would like to use
For this card made for the tutorial I First Edition 'Paper Flowers' paper pad and the Sizzix mixed effects gold card and some brown kraft paper. I also used a 'hello' die cut and a Sizzix flower die cut as well as a border and some sentiment clear stamps with black ink and finally some small 3D butterfly card toppers.

How to make your zig-zag card...

Step 1

You your paper trimmer with your first piece of card cut a piece of card 15cm in hight and 21.5cm in length

With your second piece of card cut it 15cm in hight and 20cm in length

With your third piece of card cut two lengths of card ⤵︎

  •     One will be 9cm in hight and 19.5cm in length
  •     The other will be 9cm in height and 18 cm in length    


Step 2

With the 21.5cm long piece of card score at 10cm, and 20cm - this should give you two 'pages' of your zig-zag card and a 1.5cm strip for your double sided sticky tape to attach the second piece of card (but don't join your two pieces of card just yet).

With your second piece of card score it in half at 10cm.

At each score line crease each line down using a paper creaser or boning tool if you have one alternatively you could use a ruler.

 

Step 3

With your first strip of 9cm by 19.5cm score at 5cm, 9.5cm and 15cm

This should give you a 5cm page, two 6.5cm pages and a 1.5cm strip for you double sided sticky tape.

With your second strip of 9cm by 18ccm score at 5cm, 9.5cm - this will give you two 6.5cm pages and a 5cm page

Crease down each score line.


Step 4

Put your double sided sticky tape on the 1.5 cm strip on both the main page and the inner 9cm piece of card that has a 1.5 cm strip which you will later piece together.


Step 5

On your two main 'pages' of card measure out in the centre the area you will need to cut out - this will a 5cm by 10cm rectangle with a 2.5 cm border around (see photo).

Using your precision paper trimmer, or if you don't have one you could use a craft knife on a cutting mat, cut out these two inner rectangles. These will be used to thread in your inner zig-zag pages.

Step 6

Join both the bigger pieces of card together; (this will help you work out the front and back pages). Make sure that you line up the join just right so that it easily folds but theres no lose gap on the 1.5cm strip.

Decorate the front and back pages - this is the side of card behind the page that doesn't have a rectangle cut out of the middle (see photo below ⤵︎ ). This won't be seen when your zig-zag is displayed but I find it nice to do this for presentation for when the card is folded up.

* Note: Ensure that you decorate each page correctly and the right way up.

So I've now decorated the front and back pages of my card ⤴︎ I've left the back page plain for me to write on for when I send this card to a friend.

I've used a stamp sentiment which says 'Butterfly Wishes & Flower Petal Wishes' and border at the bottom of the card. I've also used brown kraft paper, paper from the First Edition 'Paper Flowers' paper pad and the 3D butterflies (which were a gift) from HobbyCraft. 

You might be able to see in the photo how and where I've joined the two pieces of card together. The 1.5cm strip with doubled sided sticky tape on joins on the back of the card.


Step 7

Join your inner insert zig-zag pages in the same way as you did in the previous step.

Decorate the four inner 6.5cm by 9cm pages and the two end 9cm by 5 cm pages.


Step 8

Decorate the 4 pages - one the two pages with the cut out frames you can use your precision trimmer to make a frame or you could cover the page then flip it over and use a craft knife on a cutting mat to cut the centre piece out. Alternatively as shown below you could make 4 strips of card to fit the frame and affix them around the edge.



Step 9

On the inside end pages of your card measure out centrally a 5cm long line 3cm from the top and another from the bottom. 

This will be where you affix the two 5cm end pieces of your inner zig-zag - it's important to affix them centrally as it will ensure that you can close your zig-zag card (I've learnt this from my own mistake with making this card).


Step 10

Once everything is decorated and dried thread your inner strip through the two cut outs.

Affix both ends of the inner strip to the two end pages ensuring they are lined up and central (you may want to use an eraser to get rid of the pencil line). Let it dry and...

Voilá!

Tuesday, 14 September 2021

Living with limited energy

When you have a chronic illness like M.E which limits how much energy you have it does have a massive affect on your life and how you adapt your life to live in the slow lane. How much energy you do or don't have is very individual from person-to-person depending on their illness. For me my M.E is classed as being severe so generally because of this I have to make the most of what little energy I do have each day and this varies day-to-day depending on if I'm having a good or bad day and other factors such payback from something I've done. What little energy I do have is very precious to me so I have to be very careful and cautious as to where I spend and spread out my limited levels of energy. Since I became ill over this time I've learnt how to live with limited energy and how to best manage the energy I have each day.

What many people don't realise is that everything takes up energy from getting dressed, brushing your teeth, washing, watching a TV program, reading,  listening to music, playing a game on your phone, any form of exercise. It isn't just physical activities that take up energy but mental activities too, even maybe something that brings up strong emotions may exhaust you.

teal background with white text reading being sick is exhausting on top of exhaustion this quote s by That Thing They Call Recovery
Like for most people with chronic illness/disabilities including myself my days are ever fluctuating and I experience good and and bad days. Depending on if I'm have a good or bad day this dictates how much energy I have and even within that I don't have a definitive good/bad day. I have great good days and okay-ish good days then I have my better bad days then my bad days where I'm crashed out in bed and really struggling. As a result I never know how much energy I'm going to have on any given day though my better days I will have more energy compared to my bad days where my energy levels will be depleted. 

This makes life pretty difficult as I don't know what kind of a day I'm going to have. Sometimes I can predict that tomorrow won't be so great if I'd done something that day that pushed my energy levels to it's limit but how bad the next day will be is a total unknown so it's hard to prepare for dealing with the following day.

Life with limited energy, whatever has caused that, is a challenge. Energy becomes something precious that you want to hold on to and you have to spend it wisely. This links in with Spoon Theory if you've ever hear of that?

I've found that regular rest periods throughout the day help keep my levels in check. Unfortunately reseting doesn't restore or restock my energy levels but it gives my body and mind opportunities an opportunity to pause which I find is much needed and I find the routine of alternating activity and rest periods help keep my energy levels in check, this is what I call my Daily Plan. Each day I have one main activity which I use my energy on doing; yesterday wasn't such a great day so my main activity yesterday was watching an episode of a boxset I'm enjoying. On a good day however I have more energy to do a bigger main activity. - I hope that makes sense? 

As well as my main activity I have low-level activity periods where I do activities that don't take up as much energy as well as spending my energy on washing, getting dressed, brushing my teeth, doing my hair - all the basics really which I do with the help from one of my PA's which make tasks easier and reduce my energy levels from crashing.

It's a very careful balance. Some other tools I've found helpful is pacing and activity management which is where my Daily Plan come in. Finding your own personal baseline is really important too, this generally involves working out how long you can do an activity for before you're energy levels drop and other symptoms flare-up. This baseline is different for everyone and may vary depending on the activity as well as if you're having a good or bad day.

My main advice to conclude this post is to see if you could do some work with an Occupational Therapist as I did to help you put together something like a Daily Plan. Take regular rest breaks; stop before you flop aka don't overdo it. Work out your baseline and put on a timer when you do an activity so you know when to stop. Learn about pacing and activity management including the traffic light system - Sickman Communications © have a great Pacing Pack which I have and I've found it so helpful including the traffic light post-it notes to plan my day and the Pacing book which taught me everything I needed to know about pacing. Write to-do list, this could be on your traffic light post-it notes, or on a list pad or on your phone (I love the reminders app on my phone). Also break tasks down so if you have laundry to put away do it in small stages, or ask for help - it's okay to ask for help; a helping hand can often save you some precious energy. Prioritise where to spend your days energy; if you're having a bad day it's okay to do very little - listen to your body. Finally since I've become ill I've learnt that things can be left to do the next day or week (unless it's super urgent and important).

Tuesday, 7 September 2021

More than just a bad headache! - Migraine Awareness Week 2021

This week is Migraine Awareness Week. Alongside all the other symptoms that I have from my different illnesses living with Chronic Migraines (which affect around 2 in 100 people*) is something that I've just had to learn to live with as challenging as it can be.

"Migraine is a severe and painful long-term health condition that 1 in 7 people live with" - The Migraine Trust

I have roughly 17-20 migraines a month but they vary so much. One day I may have a bad migraine where I curled up in bed in the dark feeling so nauseous and unable to move and that may only last a few hours or I might get a more mild/moderate migraine that lasts for several days, or it could be the other way around. The unpredictability is hard as I know when I've got a migraine coming on but how bad it will be and how long it will last for is totally unknown.

There are different types of migraine; I experience Migraine with an Aura (which affect 1 in 3 people who experience migraines*) so I experience a visual aura or hallucination (nothing like a psychotic hallucination). This visual aura may be something like feeling like a light is being shone in my eyes or I will see little white and black dots like fireflies flying around. For me my migraine aura carries on into main migraine stage so I will have the aura alongside the headache pain stage which can be horrendous sometimes when the two symptoms are there side-by-side.

As well as experiencing Migraine with an Aura I also have experienced a rarer type of migraine which are Hemiplegic Migraines - thankfully I don't experience these very often and they where quite terrifying when I first had one. Down the right side of my body it goes numb and tingly and my speech slows down and slurs alongside the headache pain; to some it may look like a stroke but the symptoms dissipate after a few hours.

The 5 stages of a migraine


I take a medication called Sumatriptan at the start of a migraine. There is preventative medication but my GP wasn't sure what was okay to be prescribed to me due to the complexity of my different illnesses and the medication I'm on. I did get referred to a migraine clinic but due to the pandemic I got a letter to say that they're not seeing any new patients - that was around 18 months ago ad I'm still waiting and I have no idea where I am on the waiting list so I'm unsure how much longer I'm going to have to wait to be seen. I'm so grateful to have access to free healthcare but when you have a migraine most days you just want the problem to be sorted.

Difficulty is access care and medication is the campaign by The Migraine Trust for this year's Migraine Awareness Week.

With my milder migraines I have learnt to function in a limited way and I do plenty of things to help when I have a migraine. Medication obviously - my migraine medication and also pain relief. I also find laying down in a dark and quite room helps. I've also bought a koldtec™Halo headband which I find really helpful. Inside it has pockets for reusable icepacks and it helps a lot and it is something that I would recommend.

I do have triggers for my migraines such as certain foods for example garlic, wheat and gluten. I also find that I get migraines when I've visually overstretched myself such as reading lots of small print (so reading I now find difficult) or if I've been looking at a screen for too long. I also get migraines when I'm tired or when I'm unwell (like normal people unwell or when my chronic illness have flared up). Another trigger is when it's my time around of the month though this is a little erratic so I don't have a clockwork monthly week-long migraine. Tiredness or feeling exhausted is also a trigger (so having M.E doesn't help!).

Having Chronic Migraines means that I'm sensitive to light so I wear tinted lenses to dull the light I'm seeing though my glasses. I also find that I can be sensitive to sounds and smells. My migraines also leave me feeling nauseous and I have a lot of headaches alongside the headache pain part of a migraine. All these symptoms overlap with my other illnesses so it can be hard to know what is causing what symptom or sometimes my symptoms will be like dominos trigging off one symptom after another resulting in things like migraines.


Organisation & Helplines

➜ The Migraine Trust - *statitics from this organisation
        ☏ Helpline

➜ National Migraine Centre - About migraines

Tuesday, 31 August 2021

Mindfulness & meditation

A brunette caucasian woman laid with her hair splayed out wearing headphones
Mindfulness meditations is something that I do several times a day; it's something that I've built into my rest periods within my Daily Plan.

I find practicing mindfulness meditations during my rest periods helpful as it's not too stimulating and I've found learning mindfulness helps me to stay and feel more grounded which in turn benefits my mental wellbeing. I've listened to different types of mindfulness meditations such as visualisation, breathing exercises, hypnosis and body scanning to name a few. Some types of mindfulness meditations I get on better with than others and often it's a case of trying different types of meditations out to find what works best and it's something that is very individual. I also find that on different days I prefer one type of mindfulness meditation activity over another.

As well as the type of mindfulness meditations I engaged in I've also listened to mindfulness meditations on different subjects such as pain management, anxiety, happiness, gratitude, stress, trauma and fear of the future. Some of these have been mindfulness meditation courses whilst others have been single mindfulness meditations.  I've even listened to crisis mindfulness meditations which are short exercises to help me deal with a particular problem.

There are plenty of mindfulness apps out there; this year I decided to sign up to two apps: Headspace and Relax Melodies (this one you can find my review of here). My Apple Watch also gives me free access to the daily mindfulness mediation by Calm - I personally would recommend all three of these but there are plenty of other apps out there too; these are just the apps that I've found I get on best with for myself. You can also find free mindfulness exercises/meditations on YouTube, though some on there I've found get interrupted by adverts which isn't what you want when you're trying to relax!


What exactly is mindfulness?

Mindfulness is the quality of being present and fully engaged with whatever we’re doing at the moment — free from distraction or judgment, and aware of our thoughts and feelings without getting caught up in them. - Headspace

Meditation is the exercise which leads onto becoming more mind-full this leads onto a state of living mindfully in our daily lives and being present in the moment. This is a skill that I'm still very much learning and trying to be more aware and conscious of and it takes a lot of time and practise.


The benefits of mindfulness

Emotionally mindfulness helps us to feel a greater appreciation and gratitude of the world around us. Mindfulness also helps us to better understand our own selves in terms of our needs and what emotions we may be feeling and maybe how to improve our own wellbeing.

"Mindfulness also allows us to become more aware of the stream of thoughts and feelings that we experience... and to see how we can become entangled in that stream in ways that are not helpful... This lets us stand back from our thoughts and start to see their patterns. Gradually, we can train ourselves to notice when our thoughts are taking over and realise that thoughts are simply 'mental events' that do not have to control us." - Professor Williams, Mindfulness, NHS

Mindfulness helps people better deal with stress, anxiety and depression but it not only benefits people's mental health it can also improve people's physical wellbeing. In one research study mindfulness was found to improve patient's cardiac health. It's also been shown to help with the immune system and with pain. - mindful.org "Mindfulness Meditation Is Good for Your Health"

Tuesday, 24 August 2021

Dyson Fan Review

A photograph of a Dyson fan. The top component is a large white hollowed out oval, below this is a dark grey componant with an LED scree in which the top componat sits on. The next component below is a light grey silver cilllinder with lots of holes in it which is where the filters are placed inside. The final component is white with small text with the Dyson logo.
So last year I deicided to invest in a decent fan for my bedroom. I had my checklist: quiet, air purifying, and a good energy rating along with positives reviews.

I looked at many different makes and models ranging in various prices. I also read lots of reviews on places like Which? to narrow down my search. 

I settled on buying a Dyson fan which was reviewed to be the most quiet and have the best purification and the filters where said to last quite a long time and they didn't require cleaning as some models I looked at the filters needed regular cleaning. The Dyson fans seemed tone rated as the quietest and most energy efficient and the purification was also rated quite highly.

Price wise is was on the high end compared to say ones I looked at that where below £100 but I wanted something that was good quality and would last rather than finding myself having to replace it after a few years or have to keep buying new replacement filters regularly.

As I'd settled on a Dyson fan I looked at their different models and as I was looking I came across the Dyson Purifier Hot+Cool ™. When I saw that one I thought that rather than just having a cooling fan which I'd only use for part of the year if I went for this one I could use it all year round and get more use out of it for the money.


Positives

On the cool mode the fan is nice and quiet (depending on air flow speed) and quite effective at cooling the room down (though see the first point on the downsides below with regards to the fan on cooling mode).

It was really easy to set up when it arrived when I first bought it and to link to to the WiFi so I could link it with the app.

The first one like I've mentioned is that I can use it all year round. On hot days I can turn on the cooling fan; on high pollen day (as an example) I can turn the fan on low to purify the air in my room to help with my allergies and asthma then on cold days like in winter I can warm my room up which is more efficient than turning the central heating on when I'm just using my bedroom.

With the heat function I can set what temperature I want my bedroom to be at; once it's reached the set temperature the heater will turn off and monitor the room temperature so t stays at the desired temperature. Also I do find that the heater does warm my bedroom up fairly quickly.

Having the hot and cool feature is great for my autonomic issues when my body can't decide what temperature it is or getting my body to cool down or warm up.

The magnetic remote is helpful. It can either be affixed to the top of the fan or I can keep in in my organiser next to my bed. There is also a Dyson app on my phone and iPad which displays the air quality and has a remote within that app too so there are plenty of ways I can control my fan. Even better I can voice control my Dyson fan via Siri (it also works with Alexa).

black background with a diagram of where the fan is directing the air flow below is the osculation options ranging from off, 45 degrees to 360 degrees below is a purple rounded rectangle with the word done in the centre
Also on the phone app you can alter the angle of the fan so it blows in the direction you want it to. You can also set the oscillation to what degree you want to oscillate (45º - 360º) and where you want it to oscillate between on the app. You can also set the osculation on the remote control too.

You can set the fan at the rate you want it to blow out, or if I'm feeling hypersensitive I can have the fan blow out the back. Alternatively you can set the fan on auto mode and it will monitor different types of airborne pollutants and the air quality and it will auto adjust the fan rate to purify and bring the room down to a good air quality level.

The fan can be put on 'night mode' so it goes even quieter and the LED screen dims.

You can set a timer in the fan which I find helpful at night or when I just want to warm my bedroom up a little.

I find that the fan when either using it on cool or heat mode it doesn't dry out the air in my bedroom.

A circular LED screen at the top in white is a fan symbol and the number 3 indicating the fan speed. Below that is a graph with a fluctuating green and yellow line.

The fan and app provides lots of information. On the fan's LED screen you can check the air quality and different types of pollutants and their levels in the air which is displayed with a colour coding. The LED screen also lets me know the status of the filters and the humidity in the room and the room's temperature. 

The image here is the LED screen on the fan displaying the air quality over the past 24 hours. As you can see the air quality has fluctuated but stayed mostly green which is what you're aiming for. On the graph you can see some yellow which was when the air quality became poorer. On the screen you can also see the different colours going from green to red with green being a good level and red being the poorest air quality level. Even using my aromatherapy room sprays get picked up by the fan's constant air quality monitoring.


Downsides

With the heat setting I can set the thermostat to bring the room up to desired temperature; I would have liked (and I thought that it would do this) is the same application with the cooling fan where I can set the thermostat to bring the room down to whatever temperature I would like the room to be cooled down to.

The heater is louder compared to the cool fan mode.

The price point was quite high.

When on auto mode it does pick up the tiniest things in the air like if I use my aromatherapy diffuser or hand sanitiser and the air flow will turn right up.

It would be good if the app extended to the Apple Watch.


Final conclusion

My Dyson fan was expensive but so far I've found it to be good quality and the filters will last a long time (saving me money on not having to replace them or clean them frequently) - the filtration is great and I've found it to help my asthma.

Having multiple ways to control my fan is great. There's the remote, the app and Siri (which you can create multiple of your own voice commands).

I feel that my fan will prove a great long-term investment and having the cooling fan and the heater means I can use it all year round so I'm getting more out of what I bought proving it more financially worth it especially with it's good energy efficiency rating.

All-in-all I'm really happy with my purchase and I've made a lot of use out of it over the past year or so that I've had it and I would recommend this or one of the other Dyson fans. Also in my research for this blog post I've found that Boots now sell this fan so you could (if you're in the UK) earn some decent amount of advantage card points if you choose to buy it from there but I would say to check the warranty on the different places which sell Dyson fans and to purchase it that comes with a good warranty length and maybe even tech support.

Tuesday, 17 August 2021

Life with a disability - Getting the balance right in life & online

One topic that is being really talked about at the moment is the chronic illness community online sparked off by a recent BBC documentary. 

When I first became ill I turned to the chronic illness community online; it gave me a place in which I could turn to, ask questions and receive advice especially as someone newly ill and learning to adapt to my new "normal". It also gave me to an extent a network of support from others who where chronically ill/disabled especially those who where around the same age as me.

Most of the groups I turned to where on Facebook as that was the main social media platform I was using at the time; I maybe also had Instagram to (though I don't think I did when I first became ill) and Facebook was the place for groups. I also started my blog in 2018 which as the time I entitled 'Diary of a Zebra' and it mainly focussed around my life with different illnesses and topics around disability as well as guest posts from others with chronic illnesses and disabilities and I avidly made use of different illness awareness days/weeks/months. I also documented through photographs my story of illness.

However as time when on I felt entrentched within the world of chronic illness and disability on top of dealing with my own ill health and for a time being ill was all I was and had going for me. It was who I was and it became my identity.

During my time in hospital in Leeds part of my care was some individual psychology sessions in which it gave me an opportunity to talk to someone who knew about my illness and dealing with people who where chronically ill. In those sessions I grieved for my old life and explored my life with my disabilities and the identity that came with that. My friend Ruth has this quote: "Your life is like a piece of cake and you have ten portions, but only one portion is your health." I began to realise who I really was and that I was more that the diagnosis' I'd been given. 

I'd already dwindled away from Facebook but I decided to leave the groups I was in; I didn't realise how many I was part of and I saw how negative and unhelpful and in some ways how unsupportive these "support" groups where. It was around new year and I noticed in several groups one member had posted in several similar group the same post sharing the number of seizures he'd had that year. Other members where replying with how many seizures they'd had; it was almost like a completion for who'd had the most, the longest and the most serious seizures that year. How is it a 'support group' when people are in competition with each other? I now also see this on Instagram and somewhat on YouTube which is the main social media platforms I use these days. I see people determined to receive certain diagnosis or give "advice" to people that they may have a particular illness. In people's bio's its a game as to has the most letters abbreviating how many illness they have and who has the most letters. I see people post the most random videos and photos of their hospital appointments and stays, of surgeries and of medical devices and supplies. Some of these photos I get; its to help raise awareness and to let often young women with chronic illnesses/disabilities know they are not alone but sometimes I see a photo/video and I wonder why they are sharing such a post or how they can be well enough to do so. I have found some really good friends with chronic illnesses/disabilities though social media but I would say that these people do yes post about their health but it's in moderation and a healthy balance of health and non-health related content.

A caucasian woman with brown hair wearing a brown outfit. She has a prosthetic leg and is taking a selfie in front of a mirror.
Back at the beginning of last year whilst I was in hospital I changed the name of my blog to encompass all ten portions of who I am and to try and move away from the focus of my blog just being about my health. I try to on both my blog here and my YouTube channel to balance out health and non-health related content as much as I can depending upon what I feel needs to be shared and talked about. I also now think a lot more about the photos I share on my Instagram account and most of the time now I don't avidly post (partly because my life is pretty boring and also there are better things to spend my limited amount of energy on). Yes I do post the odd health post [on my personal Instagram account]; generally for awareness but I'm more cautious with what I share and I'm more hesitant in sharing with something that is deeply personal aka my health. I generally only share to raise awareness such as recently for Severe M.E Awareness Day but even then I feel I'm more careful now with what I post on Instagram and YouTube.

Reflecting on how I post now compared to how I used to post about my health I feel I have a healthy balance. Yes my YouTube is more I'd say disability focussed but I do try to get plenty on non-health related videos shared and the same for my Instagram. I feel not over focussing on my health on social media has helped me in finding my identity and that healthy balance as away from social media my disabilities are my full-time job at present and emphasising that online I don't feel is necessary. Sometimes I do worry that because I don't post about my health that much that people don't realise or don't know/forget that I am chronically ill.

Another thing that I've done to make my social media presence more healthy is to be careful with who I follow or the YouTubers I watch. I'm also careful with friend requests on Instagram. I try not have chronic illness accounts that are too OTT about their health, like recently I had one request and in their bio in bold capital letters they'd pot that they where 'seriously chronically ill' - as though they where they most chronically ill person ever and some of their posts where pretty unhelpful and wanting sympathy for their struggles with their health. Again this is something I don't partake in. I also I would say on YouTube I probably do watch more content creators that do have disabilities as I find I can relate to their videos, but I try to not watch too many health relate videos and follow say crafting or makeup artist YouTubers. I have enough of my own disabilities in my own life to deal with let alone filling my life with more disability content. In terms of Instagram I try to follow fewer accounts by those with disabilities but those I do follow I try to follow those that have a disability/not related to disability posting balance and I try to balance this out like I do with YouTube on accounts that are about other things I like such as crafting, hand lettering, letter writing, envelope art, make up etc. 

It's all about getting the balance right and releasing and seeing to all ten portions of who I am. I won't deny that the disability portion is't there as it is, loud and clear, but it's not the only portion in my life.

Sunday, 15 August 2021

Review: Crippled: Austerity and the Demonization of Disabled People

Crippled: Austerity and the Demonization of Disabled People Crippled: Austerity and the Demonization of Disabled People by Frances Ryan
My rating: ★ ★ ★ ★ 

This book is so insightful. It is heavy on facts and statistics but this backs up to points made by the author and the facts and statistics given help support the depth that the author goes into on the different topics she covers in the book.

The chapters are split by different disability related topics such as housing, women, children, work, employment, education and healthcare.

As a young disabled adult I already know the challenges I've faced such as claiming benefits as I'm unable to work and to help me with the extra costs I incur because of my disability and how claiming these benefits this difficult process in filling out the paperwork and being assessed by people who have little knowledge of disability. Or difficulty in accessing healthcare including medication and specialist services (which are often dictated by how much these things cost) and also my experience of desperately trying to get a care package through adult social care.

This book made me realise how hard it will be for me when I try to return to education and the challenges I'll face at University to get the support I need there both for my education then for my accomodation and then the challenges I'll face when I try and get paid work that will fit around my disabilities

For me I enjoy statistics and it really helped paint to the picture of the hardship, ablism and austerity (and much more) that disabled and chronically ill people in the UK face in all aspects of their life.

The book made me realise, despite the many challenges I have faced and will face that I'm one of the lucky ones. I haven't had to go to a tribunal to get my PIP (Personal Independence Payments) that will help me with the extra costs of having a disability. Though I am struggling to get some healthcare services my experience so far has mostly been great and I feel blessed to have such as good healthcare team.

I have access to my specialised prescribed nutritional shakes unlike some disabled people interviewed in the book who aren't able to access specialist meals or can't afford electricity to store their refrigerated medication such as insulin.

As well as the book being heavy on facts and statistics it also features a lot of case studies of disabled people which help, I felt, made the book more relatable and realistic. You could hear real stories of real people and the real situations and challenges that these people featured have faced.

I think that featuring case studies alongside the factual elements and statistics have made this a really insightful (I listened to it as an audiobook which is great for accessibility).

However I don't think that this book would be for everyone as some people may find the facts and statistics cited too much - it did take me a while to listen to this book partly because I wanted to keep up with understanding the book but I also had other books on the go too - but if you can I would seriously recommend to give this book a go at reading/listening to.

View all my reviews

Tuesday, 10 August 2021

Chronic illness & special occasions

Blurred focus of a caucasian woman in the background in the foreground is lit candles shaped like letters spelling birthday the woman in the background is posed to blow the candles out
Special occasions can be hard when you're chronically ill as it may mean missing out or not being able to participate s much as you would like to. I find this really hard myself and though I've come to a point of acceptance that I'm not able to do this or I'll only be able to make a short appearance I do still feel a sadness but sometimes resentment towards my ill health for stopping me from enjoying social occasions whether this be my own birthday, Christmas or family get-togethers like we've recently had.

I only know my Dad's side of the family and my Dad had two other brothers and a sister and one of his brothers and his sister live away - my uncle with his wife and my sister with her husband and son. My other uncle and his girlfriend live locally but we don't see then loads compared to hw often other families see each other. So for us seeing family is always a special occasion that I look forward to.

However because of my chronic illnesses I'm limited with everything that I ca do and there are no breaks from it so I can't just press the pause button to enjoy special occasions.

The past few days Saturday to Tuesday (today) we've had a family get-together (on my Dad's family side) as one of my Uncle's has just turned 60 so my Dad's brothers and sister (and one of my cousins) have travelled from where they all live for the occasion. As it was a special occasion my Dad arranged some family things for everyone to spend time together but there was only one thing on the agenda that I could do and even with that event being here at home it was a challenge and I couldn't mange to stay for the whole party.

This felt hard as Naomi wanted to be able to do more things; things I enjoy or haven't done in a long long time and make the most of the rarity of our family all being together. I suppose you could use that popular acronym FOMO - the Fear Of Missing Out to how I feel as I do feel like I'm missing out and it's hard being stuck at home whilst my family are all together having a lovely fun time doing enjoyable things together without me. Even if I used my wheelchair I still wouldn't have been able to participate as my body can't cope with being out for long especially engaging in activities for several days in a row and it would have lead to a big crash and it would be very difficult for me to recover from and would have taken a long time to get back to my level of 'normal'.

I have to be so careful with where I put and spend my precious energy and my symptoms don't stop for any occasion. There are no days off from being ill unfortunately so you just have to do your best to embrace and live your life within the limitations posed by my illnesses.

Dad when he was planning the family get together did plan to have the party on Sunday here at home so I could at least join in with that and because it was here I could easily go to my bedroom when my body had had enough. I say my body because I, Naomi, hadn't had enough - it was my body and my symptoms that had enough when I retired to my bedroom. I pushed my body as far as I could because I wanted to make the most of seeing my family. I do find that sometimes there are times where it's okay to push myself which are actually generally at special occasions. During the party I did step back for a while; I went and sat away from everyone to somewhere quieter to dull down the sensory overload for a while. Doing things like that I find helpful.


Tips for coping & enjoying special occasions*

  1. Pace yourself - you don't have to do everything or all at once.
  2. Think through what aspects you'll join in with and which parts might be best for you to sit out of.
  3. Help out with the preparations as this can be just as exciting.
  4. If it's an occasion like Christmas or your birthday you can decorate your room to help you feel like you're part of the celebrations.
  5. It can be hard if you're not able to eat the special occasion meal such as Christmas dinner or birthday buffet but you could maybe select one food if you're able to eat a little so you feel like your still part of the celebratory meal - a small piece of cake will be just as enjoyable as the whole buffet.
  6. Spread out opening gifts, this could be throughout the day or over several days.
  7. When it comes to opening gifts to make things easier you could ask family and friends to make them easier to open such as by using less sellotape or putting gifts into gift bags.
  8. You could film yourself opening gifts and share this video with family and friends so they can see you opening their gifts to you.
  9. If you're not able to participate ask for people to take photos and videos for you to watch and look at so you can see what went on.
  10. If you are able to participate in an event, even if it's for a short while take photos and videos of yourself with your friends and/or family so you have something nice to look back on.
  11. If you're not able to attend a special occasion ask for someone on your behalf to pass on you best wishes, congratulations, happy birthday or other sentiments. Alternatively you could write a card with a message to be given to the person the special occasion is for so they know that you are thinking of them.
  12. Remember that your family will be understanding if you're only there for a short while or not at all.
* Advice taken from 'Severe M.E: A Guide to Living' by Emily Collingridge - (many of the things listed I've done myself and they do help a lot.) Just as a side note if you have Severe M.E I would highly recommend this book which you can purchase here

Sunday, 8 August 2021

Living with Severe M.E | Severe M.E Awareness Day

A caucasian woman in a dimmed room. She has an eye mask on and is holding a hot water bottle. She is laid in bed supported by pillows.
The reality of Severe M.E
In the UK there are around 250,000 children, young people and adults with M.E - 1 in 4 of those people will have either Severe or Very Severe M.E and I am one of those.

My M.E didn't start out as being severe. I was at university when I got unwell and as a result I had to leave my studies. At the time no one could give me a definitive answer as to what was wrong with me; my symptoms where just 'medically unexplained'. I was getting more fatigued and exhausted and each time I saw my GP I was told that I had Post Viral Fatigue Syndrome, but there wasn't a key virus that I had unlike the experience of some people with M.E and now those who have had COVID and gone of to develop Long-COVID.

Then on the 4th July 2017 I finally got my first appointment with my neurologist regrading the possibility that I had FND; he confirmed that diagnosis and alongside that he also told me that I had M.E.

I came home with a diagnosis that I'd never heard of. I wasn't referred onto anyone or anything about my M;E and locally there isn't a service I can access. So I spent my time learning what M.E was and the best ways to manage it.

Over time my M.E got worse; I didn't realise it at the time but looking back over the time whilst I've been ill there are so many things that I struggle or can't do now compared to other times when I first became ill and the things I could do back then.


Defining Severe M.E

My M.E is now classed as 'severe' based on the M.E/CFS Disability Rating Scale

This is a generalised summary of the experiences of people with Severe M.E though it's a very individualised illness so some of the things on the DRS may differ to the experiences of what someone with Severe M.E may experience or have difficulty with:

Severe

70% Disabled: Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24-hour basis. Very limited mobility. May require wheelchair assistance.

80% Disabled: Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation. Frequently unable to leave the house and may be confined to a wheelchair when up, or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision. 

 - M.E CFS Disability Rating Scale for Severe M.E

Due to the fluctuating nature of M.E many people will fall between one percentage and another depending on whether they are having a good or bad day or periods where they are more well with their M.E but then may experience a crash and so their M.E will fall into a different percentage category on the DRS.


The positives out of having Severe M.E

Despite how incredibility difficult, challenging and exhausting (and much more) having Severe M.E is it has brought some positives into my life.

I now feel that I have a greater sense of appreciation and gratitude for things in life especially small things like a letter from a friend or having clean washed hair or spending time outside even in the rain when I go out for short walks in my wheelchair. I'm also grateful for the support I have in my life from both professionals and friends.

When I first became unwell I turned to support groups on social media but I found many less than supportive; I'm not one for Facebook anymore but Instagram is my social media preference and over time I've come across different people and gotten to know them and many of whom I'd now consider to be good friends. We support each other through messages or some through letters and it's been a much more positive experience for me. I can turn to my friends and we can support each other and offer advice or share experiences such as for me recently I've been talking to some of my friends about having catheters but at the same time we don't just talk about health stuff, we talk about our pets, hobbies, projects we have on the go, books and much more which I feel is so healthy as we are more than just a bunch of illnesses and symptoms.

I wouldn't have started pen palling if I hadn't have become unwell. Letter writing is a massive joy for me in my life and it brings me so much happiness to know that the person receiving my letter will bring a smile to their face ad maybe even postal workers too - I know that the ladies who work in our village Post Office love to see my letters.

As well as letter writing I also wouldn't have started blogging or my YouTube channel either. I love blogging and sharing videos and it's a nice hobby to help raise awareness of living with disabilities like M.E but I share posts and videos about non-health related content too as like when I talk and write to my friends there's more to me than just being ill so my blog and YouTube channel is about all aspects of who I am and my life.

I love my advocacy work too that I've done with the M.E Association and Action for M.E. With these two organisation I've written posts for their website and membership magazines and also done some collaboration videos too.


M.E Organisations & Charities

M.E Association Helpline: 0344 576 5326 Action for M.E Helpline: 0117 927 955

Smile For M.E
Delivering Smile parcels to those living with M.E & their carers

Tuesday, 3 August 2021

Why I'm not a warrior, fighter or superhero...

NOTE: I just want to say before I continue with this post. I'm not against the terms and people referring to themselves as 'chronic illness warriors' or their 'fight' with whatever illness they have and other such language, it's just that this language doesn't sit with me.

You'll often hear of of people with illnesses referred to themselves as 'fighters!' or 'warriors!'. Even when someone has something like a simple cold may say 'I'm fighting a cold!'. This all makes it sound like we're in a war zone with our bodies and it's as if sheer willpower will get you through the day.

I'm chronically ill but I don't think that makes me a 'warrior' or 'inspirational' for living despite this. I'm just Naomi and I so happen to be disabled and living with a set of chronic illness and symptoms. Yes life on a day-to-day basis is a struggle and sure it takes a lot of effort to do everyday tasks and I require help with things. Then on my bad days when I can't get out of bed it's not because I've not tried hard enough or 'lost the battle' to get out of bed. I'm just simply not well enough to get out bed.

When it comes to chronic illness there isn't an 'after' or 'when I'm well again'. It's a journey of grief, acceptance and coming to terms with for the life I have now and learning to go with the ups and downs of good days and bad days and in-between days. I am now trying to let go of the life I did have planned out for me especially when it comes to my education and the career I'd always wanted (and I still hold out on the hope that one day I can return to that). Some days the grief for that lost life I planned is still very raw. 

When I first got ill ill I did feel like I was fighting against my symptoms which at the time where 'medically unexplained'; hoping they would just be something temporary, but then over time I had to accept that this wasn't going to be something that was temporary. That mainly kicked in when I got my M.E diagnosis. When I got that particular diagnosis it was like a weight had been lifted over what I had been wondering what was wrong with me (I also had my FND diagnosis but that's a different story). After my M.E diagnosis I wasn't really told anything about M.E so I had to go home and research things myself* and that made it sink in that my health problems where there for good but also that it wasn't anything that I was doing wrong to make my body feel the way it did and that there was nothing to fight against. When I was fighting against my body I was just stressing it further and probably making myself more ill in the process.

Accepting my disabilities has been hard and it took a while for me to refer to and see myself as 'disabled' and many times I haven't wanted to accept the fact that I will be ill for the rest of my life to one degree or another and sometimes I find myself hating my illnesses or hating the fact that I live in a broken body that can't be fixed.

Two things really helped me with this. The first being YouTube; watching YouTubers like Jessica Kellgren-Fozard, Georgina's Journey, Hannah Hodgeson, When Tania Talks and Bex's Life to name a few and connecting with others with the same disabilities as mine online, some of whom I've become pen pals with*. 

Of course it was and still is really difficult especially when I still feel so young to be dealing with being chronically ill and seeing my life and future bing turned upside down but something that I never planned for or chose. It's especially hard seeing people around me my own age like my brother doing many of the things I planned and want to be doing and achieving. This is where Ive fond it helpful to find people around my own age to talk to about being young and disabled in a healthy and supportive way.

Going back to the subject of this post to me the word 'fighting' sounds exhausting. Sometimes you just want to take off your armour and talk about how hard it is and how it sucks to be chronically ill. When this happens I don't want to be told that I'm inspirational and to 'just keep fighting/going!' or to 'battle on!'. I just want someone to listen to me and for me this where I've found therapy or talking to friends with disabilities helps. My friend Ruth has this quote: "just keep swimming and when you can't swim just float" and sometimes I just want or need to float for a while.

It's also been important for me to not to make my illness my identity; it's important to separate my health from who I actually am. When I first became unwell yes it did feel like it was all I had in my life; being disabled often feels like I full time job. Yes I am limited and defined by my health, but it's not the sum total of who I am. My health is part of me, (some of it's even in my genes) but there are so many other aspects of who I am that aren't to do with being ill. I find it so sad on social media when I see people so consumed by their illness and it seemingly to be the only thing they have going for them.

White square with a thin red border different black banners with text on each one naming different illnesses followed by the word warrior

I'm not totally against the use of terms like 'warrior' and 'fighter' and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems - like for example how I'm part of the Chronic Warrior Collective and writing for The Mighty.

Living with a chronic illness (or several) isn't something I chose so it doesn't inherently make me brave or inspirational. I don't need to be clapped for every little thing that I do. I am just living a life that just so happens to involve the fact that my body doesn't work in the way that it should and won't ever be completely mended.

For me giving up the fight helped me accept that I was chronically ill as opposed to chasing after trying to fight a battle that I was never going to win and for my body to be fixed and healed and be whole once again. That's why I don't see myself as a 'fighter' or a 'warrior' but I'm not against those that choose to use those terms, it's just not for me.

Extra Imformation

If you're newly diagnosed with an illness I'd recommend you turn to reputable sources of information like charities dedicated to your illness. You could ask the clinician who has diagnosed you for some information that you can read or ask them for any particularly relevant websites you can read about your new diagnosis. I've recently written a blog post 'My advice to someone newly diagnosed' which you may find helpful.

Connecting with others online is great but I've learnt over time that this has to be done carefully and you need to find the 'right' people for you. Personally I prefer and get on better with those that don't solely fixate on their health but more see it as part of their life but have other things in their life too. I find that this is more healthily. My advice with online support groups is to find the the right groups for you if you do want to join them as they're not for everyone. At first I did find a great online group but it's not as active anymore. The main problem I've found with only support groups is that there can be some negativity which is counterproductive to the group being their for "support".