What exhaustion really feels like

Many people think that M.E. is about ‘just feeling extra tired’ but the reality it that the fatigue with M.E. goes way beyond feeling tired. Also fatigue isn’t the most prominent symptom of M.E.; most people with M.E. find Post Exertion Malaise to be the more problematic symptom. (Among many other symptoms.)

Exertion does just come from doing physical activities, it could include exertion from cognitive activities other things too. Things like talking, reading, writing part of a blog post or pen pal letter, listening to an audiobook, watching a TV program, doing some crafting etc. Other extortions that can trigger it are sensory like light, especially artificial light I personally find, sound or even spending too much time sat upright.

Here is an example…

An example of an exertion I find incredibly difficult and try to limit to only when essentially needed is hospital appointments. Most of my appointments are done of the phone and just the talking is often very exhausting. Going in person to a hospital appointment is a whole other thing.

I have to schedule my appointments to be at a time when my PA is able to take me as I’m unable to take myself. I could use patient transport but it’s not time specific plus so I get to and from my appointment much quicker with my PA. Plus I need my PA to be there with me in case I become unwell like times I’ve had seizures and my PA is able to deal with them saving me a trip to the Emergency Department. (The exertion often triggers my seizures too).

I find the noise and artificial lights in the hospital challenging on my energy levels and the anxiety adds to my fatigue too.

Then there is the appointment itself having to listen to the doctor and take in what they are saying to me as well as taking back to the doctor answering their questions that uses up my cognitive energy. 

Then I might be sent for tests. The doctor might want me to have bloods taken or for me to have an ECG. I’ll try to request these to be done at home rather than and there after my appointment. I’ll also have to go to reception and book my next appointment and request this as a telephone unless I need to be seen again in person for another appointment or procedure.

My wheelchair helps make things less exhausting plus I’ll always have a seat to sit down on. - Hospitals just never seem to have enough blue badge spaces or even parking spaces full stop. It’s quite easy to glide around once I’m in the hospital.

Then my PA has to get me and my wheelchair home. I’m usually feeling crashed so I’ll settle in bed as soon as I get home.

After all that exertion and now I’m extremely fatigued and will be feeling crashed out and will experience Post Exertion Malaise as a result. This could last days, a week or even weeks and to what severity I don’t know.

Sometimes the when I get PEM the cause feels worth it, like spending time with my Dad, other times it feels a frustration and not worth the PEM especially as PEM makes me feel so awful.

▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼

What exhaustion feels like.

▲▼ ▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲.▼▲▼▲▼▲▼

The reality of exhaustion and PEM

I feel exhausted all the time. I wake up feeling exhausted like I haven’t slept. Sometimes I have insomnia because I’m too tired to sleep. It’s like I have a weighted blanket over me and everything goes in slow motion and I can’t focus because of the brain fog.

It then makes doing tasks difficult as I start the task feeling exhausted so I easily over-exert myself. 

I feel like I’m in a perpetual cycle of PEM and exhaustion as once I’m over the PEM of exerting myself over doing one thing it’s not long before I’m exerting myself over something else causing exhaustion and myself to experience PEM again.

Initially I’ll feel the payback and crash, which will turn into PEM. I won’t know severe my symptoms will be (so what extra care I’ll need), how severe my symptoms will become or how long the crash and PEM will last for.

With exertion it’s like walking on a tightrope to not overdo it. The smallest amount of doing too much will push my body over the edge and cause me to develop PEM. Even simple things like speeding too much time reading or writing a letter to a friend, holding a telephone or zoom appointment for an hour, or sitting upright for too long on some days can tip me over the edge. Forget going out the house and the great deal of PEM that causes me.

I try to pace myself; not ‘boom and bust’. Have regular rest periods, traffic light system my to do list etc. I try to do all the right things to try and lessen to PEM and payback. It really is so hard to navigate doing this on my own and now I’m under an M.E. Service I hope they can help me not to ‘boom and bust’ so much and reduce my PEM and constant feelings of exhaustion.

▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼

What I’m like when I’m experiencing exhaustion and PEM

At my very worst I can be unable to move or speak. I cannot tolerate light or sound (so I’m unable to listen to my audiobook for company), I struggle with strong scents like perfume and I struggle being touched. Even the movement of my air mattress can be difficult to tolerate. Even carers banging my bed can be painful. Sudden sounds like my carers phone getting an alert are also hard to tolerate. All personal care has to be done by my carer and I need assistance with drinking and eating. I do find my hydrate bottle helpful as I can drink hands free. It’s also difficult as I have to wait for my carer to arrive to give me pain relief.

Usually however I am able to move and get myself comfortable in bed. I may be able to get pain relief but sometimes I still have to wait for a carer to do it for me, so that’s something that varies. I can talk but voices have to be get at a low volume and conversation is kept it a minimum. I am able to listen to my audiobook or a podcast for company; I prefer to listen on my noise cancelling headphones (I do this normally anyway). Television programs or YouTube videos are usually something I find too sensory overwhelming so can’t tolerate this type of entertainment. I usually have soft low lighting on in my bedroom and keep it to a minimum. Things like fairy lights or my mushroom lamp. Sudden sounds are still difficult. I still need full help with my personal care so I don’t tire myself out. I can usually manage drinks independently. I might need help eating, I’ll still stick to soft food that is easier to eat and I’ll have my food cut up small so I can just eat with my adaptive spoon. I still find my hydrate bottle really helpful as it means I don’t have to lift heavy bottles.

▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼

What are some of my symptoms?

For me M.E. is a neuro-immune illness so when I’m more unwell my immune system flares-up and I experience flu-like symptoms.

I also find my body is harder to co-ordinate and my arms and legs feel like they have weights on them. My muscles are also weaker and my muscles tremor more too. I’m also more unsteady and I have more falls and I find it harder to transfer into my wheelchair. - This is where having my new wheelchair is helpful. It’s lightweight so easy to move around in and I use it around my home when I’m able to get out of bed.

I get overwhelmingly fatigued to the point where I can’t focus my brain or my eyes and I feel drunk.

My PoTS and Orthostatic Intolerance worsens so I’m more dizzy and lightheaded and I have to lay down more and tilt my bed. My heart rate is higher even and my blood pressure lower even when resting. I’m more at risk of passing out too.

I find when I’m tired I’m more cold even when the weather is nice outside.

Brain fog is a big symptom for me. My cognitive function is really affected I get easily confused and forgetful. It’s like my mind is puzzle pieces that I can’t fit together, that’s what brain fog feels like. Another way to describe it is like trying to move through sinking sand. I struggle to focus my eyes too sometimes.

Like I put above sometimes I’m unable to speak. Other more commonly my speech will becomes slurred, or have difficulty finding words. I often sound drunk when I’m very exhausted. I’ll often use the BSL signs to aid my communication when I’m around people who understand my BSL/SSE and I use communication cards too.

My sleep will also be affected too. Despite the debilitating fatigue during the day at night I’ll struggle with insomnia. I did a group session on sleep for people with chronic pain that was helpful and I hope the M.E. Service can help with this. Currently I put my insomnia down to not having the energy to sleep, but that’s just my guesswork but insomnia is common in people with M.E.

▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼▲▼

So as you can see there is a lot more to fatigue and exhaustion than ‘just feeling tired’ and what PEM is like. Fatigue, exhaustion and PEM can be so debilitating and the hardest aspect I find is the unpredictability with it. Not knowing when I’ll get these symptoms as one moment I can be relatively okay and then a JCB truck can dump a load of exhaustion on me and I can struggle to function. Or I can do something and then I’m hit with PEM that I have no idea how long it will hang around for until I’m back to my usual self. Or after severe long periods I’m left wondering ‘is this my new normal now?’ It’s so incredibly isolating too especially when I don’t know what the right thing or the wrong thing is to do. So let’s just hope for this M.E. Service and they can offer me some advice and guidance and hopefully some things to lessen the severity of my PEM sometimes. I’m even hoping there will be a group session where I can meet others with M.E. too.

FOMO, chronic illness and social media

You’ve probably all heard of the term ‘FOMO’:

“FOMO, short for "Fear Of Missing Out," is the anxiety or apprehension felt when someone worries about being excluded from or missing out on a rewarding social experience. It's often linked to the constant exposure to social media and the perception that others are having more fun or living better lives.”

However for me FOMO isn’t the Fear but the Feeling Of Missing Out because I literally am missing out. I don’t have the capability to go off and try out and join in and engage and experience what I fear I might be missing out on. Sometimes I feel trapped by my disabilities so seeing people on social media, especially those with the same physical disabilities as mine, seeing posts of this people doing what I saw as ‘really awesome things’, things that I’d love to be doing brought on those serious Feelings Of Missing Out.

FOMO, disability, social media and me

I used to follow a lot of disability content creators especially on Instagram and YouTube because I wanted to follow people like me who I could relate to as they had the same or similar disabilities as me. I just wanted to find young chronically ill and/or disabled people like me as I wanted to find a community where I felt like I belong. Having chronic health problems and disabilities I feel very isolated and I don’t know anyone in person with disabilities too hence why I turned to the online. It was also in some ways supportive especially when I first became ill and then received the names to the illnesses I have.

However I often felt feelings of FOMO when I’d go on social media but I didn’t really recognise the impact it was having on me. I’d see young disabled people with the same illness as me or other disabilities and I felt connected and I could relate to what they were posting about and it helped me in some ways especially early on when I first became unwell. 

However on the flip side especially on Instagram I’d see people’s posts of them on holiday or going on days out or dancing or modelling and doing what I saw as other ‘really awesome stuff’. I’d think to myself ‘I have M.E. and/or EDS too why can’t I do that?!’ or ‘I’d love to travel to the US to do the dance Rollettes too’, or ‘I’d love to go on a day out like’, ‘I wish I could do an opportunity like that’, or ‘I wish I was well enough for an assistance dog’, and so on and so on. Or I’d see posts where people would be filming more of their lives and I wish I could build up my confidence to film more of my life too. Or I’d see them on days out and I’d wish I had the ability to do that too but in my reality my health restricts me to not being able to travel that far away. I could keep going on and on but these are just a few examples of how social media affected me and brought me feelings of FOMO.

I’d also watch a lot of wheelchair ballet and dance content because I missed that from my pre-M.E. life and I loved this particular content creator and she’s done some really fantastic dance opportunities plus modelling which looked so amazing to do. 

My old pointe shoes

I did try an online 1:1 dance session in my wheelchair but it just proved too much for my body. I think ballet is part of my pre-illness life now. Who knows, maybe when my body is in a better place wheelchair dance or ballet could be part of my new life? Maybe I could start by doing some Progressive Ballet Technique to ease me in, but let’s just take things one day at a time.

I realised after a while the effect social media was having on my mental wellbeing. As a result I took a step back from social media because I find the FOMO so unsetting, frustrating and overwhelming. I wasn’t jealous I just felt frustrated because of the limitations put upon me by my disabilities and also because of the lack of opportunities to do things locally. For example where I live there’s no opportunity to do wheelchair sports or dance and we’re not close to any cities and the things living somewhere bigger offers like museums, art galleries, expo events etc. and we don’t have any National Trust or many similar places nearby or places where say I could hire an off-road mobility scooter and go rambling in the outdoors. Me as a person I love to be active and I love the outdoors and I love visiting new places (when it’s quiet and not busy).

I’m now had a sort out over who I follow, especially on Instagram. I now don’t follow the accounts that bring on feelings of FOMO, or if I find something too much but I still want to follow them I might restrict them so their posts don’t pop up on my feed. I also find I spend less time on social media too; I can even go days without going on the apps.

I also have to remind myself that social media posts are just a small snapshot, a highlight of someone’s life. You don’t see what is going on before or after that photo or video was taken and shared, just like people don’t see the bigger snapshot around my posts. That disabled content creator might have a milder form of M.E. than me and therefore is able to do more. As well they might still really struggle with payback after doing that day out they’ve posted a film of. They might still be in pain while they’re filming or they’ve saved up all their energy to film that post. Or especially with influencers they probably have paid to help them do their content. We just show what we want to show on social media. You don’t know what goes on behind the scenes.

People might even feel FOMO about me wishing they had a Batec too or a wheelchair like mine, who knows?! 

I think what is also important to do and I was reminded of this today is when I see a post that might make me feel ‘megh’ is to actually be happy for that person. Happy that they enjoy the freedom of dance too, or happy that they a really enjoyable day out or holiday or happy for them that they enjoyed going to see a musical or seeing friends. These people are showing these snapshots and moments of their life on their social media because it’s meaningful to them and they want to capture that moment as it’s special to them and they want to share it (unless they’re being paid to the post obviously).

I’m now selective over what I post and I only like to post the positive things. Sometimes I wish I could post more of the reality of my life like I see other people do but I haven’t had the confidence to do that yet and I don’t want to delve into the toxicity of chronic illness on social media (which is a post for another day).

I also have my personal social media for myself. Snapshots of my life I want to share with people but more importantly a timeline for myself to look back upon. Reminders of special memories, moments I want to hold onto or a catalog of things I made and things like a timeline of home and garden and what I’m doing and changing as time goes on.

Celebrating little wins

I just wanted to come on here to celebrate some wins with you.

The first is that I’ve now been living on my own for two years now (and 3 days) - this is coming from someone who never thought they could manage living alone.

There are still many challenges and it’s not easy with my health and care situation but I’m thriving living alone. I love living alone and having my own personal space and being able to make decisions about my own how like what laundry products to use, what I put in my shopping basket, or what cleaning products I use. Little things like that mean a lot to me. I love how I’ve slowly decorated my bungalow more it more and more ‘me’. It truly feels like home.

My second little celebration is the process I’ve made over the past few months with my physiotherapist and today and today she felt I was really to be discharged. I’ll feel sad not seeing her but it’s one less appointment to keep putting in my bullet journal.

It’s been so helpful having home physio and having it 1:1 really helped too. My walking is very unsteady but that has slightly improved and I also now have my new wheelchair to use around the house to reduce my falls. My muscle weakness in my legs is still there and I still struggle but there has been a slight improvement. My upper body is better too; we worked on that to help enable me to push my wheelchair. One of the biggest things that my physio introduced me to was a resistance band (it’s yellow and smells like bananas and custard!) Anyway I’m doing well with that and today my physio said that she never thought she’d ever think of giving me a resistance band when we first started! 

I’ve built physio into my daily routine. Some days I’ll do more other days I’ll do less but every day I aim to move my body a little. I do have to listen to my body and stop before I tire out or cause a subluxation or dislocation. (I plan to do a blog post on physiotherapy with EDS). I feel this experience of physio has been much more positive than my last experience. That was when I was make to do GET Graded Exercise Therapy which at the time was on the NICE Guidelines as a treatment for M.E. I feel GET really contributed to the decline in my M.E. and I’m so glad it’s no longer a recommended treatment by NICE. 

On the lines of M.E. I’m now finally under an M.E. Specialist Service!

For a long time I have wanted and needed specialist support and my GP has been trying so hard to get me under a service. We don’t have our own local service and the many services my GP tried they either didn’t take out of area patients or there wasn’t the funding for out of area patients like myself. Finally however I’ve been accepted by a service and my first appointment with them is a telephone appointment in October so not even a long wait to be seen. They are a long way from home and I do imagine they may want to see me in person at times so I’ll have to wait and see and work things out when that happens. But yay finally! I feel heard and I don’t feel so alone now and it’ll be good to speak with professionals who ‘get it’ maybe other patients with M.E. too?

Something positive out of M.E. Awareness Month.

My final win to celebrate is my wheelchair.

I’ve had my GTM Mustang just over 2 months now and it’s really changed my life for the better. I’m able to use it around my bungalow as well as on the occasions I go out and it’s given me freedom and independence and safety and it’s really improved my quality of life too.

I love the accessories on it, especially my LapStacker. That’s been a true game changer! My wheelchair is just more ‘me’ and it meets my needs been too compared to my previous NHS wheelchair. It’s just so light and easy to use and transport too.

I just wish I got push up/down handles but at the time I thought my backrest would be too low for handles. Handles was something I did want to discuss with the Wheelchair OT’s but that appointment was a whole other disaster. But it helped to hear recently on Instagram that Gem (@wheelsnoheels) has regrets about some of the things she wish she’d put on her GTM Jaguar chair which outwardly she loves and is the best chair she’s ever had! So that made me feel like it’s not just me.

Living alone for two years now! The ups and downs of living with M.E.

Today is M.E. Awareness Day (though every day should be an awareness day). As well as this exactly two years ago today I moved into my very own bungalow. Over the past two years this bungalow has been turned into my home and my sanctuary. It has been adapted for my needs as well as being decorated to make it more ‘me’. I’m really excited to continually make more changes to my home and I’m so excited for what’s in store for my garden too.

I really still can’t believe I’ve made it two years. There was a point when I didn’t think I’d be able to live on my own. I definitely couldn’t have done the process without my housing support workers. However over time I’ve just found ways to make it work for me and I much prefer having my own home compared to living at my Dad’s. I do feel very fortunate to have my own home at my age as I know many people my age are still struggling to get their first home.

I love having my own space to escape to. I like my quiet times in the day when I don’t have a carer. I enjoy cosy mornings in bed with a book and cup of tea or coffee or sat at my craft desk organising my bullet journal or crafting, or laid in bed with an audiobook or podcast. I love having my home decorated how I want it decorated. I also like putting in the laundry what products I want to put in my laundry. Or having a wide selection of bath products for my morning bath so I can smell something different each day plus what cleaning products I use too. Just all the decisions being my own I love being they’re my decisions about how I live my life. I think it gives me back some control. Those little things make living on my own a big thing.

Living alone with Severe M.E. among other conditions however isn’t easy at all. I’m reliant in my care team of PA’s, carers and nurses as well as other professionals like my GP and the community physiotherapist and Occupational Therapist for my care. I often wish I didn’t need care but in the odd occasions when I’m left without care I realise how much I need my PA’s and carers. I think It’s especially hard being young(ish) and needing care too?

One of the hardest aspects I find about living with M.E. is the unpredictability. I never know if I’m going to have a good or bad or an in-between day and that can all change quite quickly. I can be fine sat doing an activity and suddenly I’m overwhelmed with exhaustion, pain, hypersensitivity, dysautonomia symptoms etc. and soon I’ve overdone it and I’ve gone boom and bust and I’m dealing with the payback. Or I might do something and experience Post Exertion Malaise, from which I might crash.

Crashes are when symptoms become significantly worse. They can last a day, a few days, a week, a month or even longer you never know you just have to take it step by step. Even when you aren’t crashed and you’re resting when you have Severe M.E my symptoms are still very much there. 

I find resting doesn’t restore my energy, it just allows my body to just stop for a short while. I don’t even wake up feeling refreshed. People often associate M.E. with fatigue and while fatigue is a big symptom and a difficult one (I get tired of being tired) PEM is probably the more pressing symptom. After every activity I do I’ll experience some kind of PEM. This comes with a whole host of different symptoms but as the name suggests Post Exertion it really means the smallest exertion can trigger PEM. It can vary in severity like with crashes and you don’t know how bad the PEM will be, what symptoms you’ll experience, or how long it will last for. PEM can trigger a crash too.

Crashes or bad days are hard because I live alone as I might not be able to get pain relief until my carer arrives for example. I also can’t get up to fetch something I need. I have tried to set up my bed area as best I can to make it as easy as possible for when I’m in bed or for when I find I can’t get out of bed. I do also have my emergency CareLink and thankfully my Dad doesn’t live far away either.

I have lots of aids to help me be independent and to make tasks easier. For example I have my hydrate bottle that attaches to my bed with a long straw so I can drink hands free in case I find can’t lift a bottle. It also really helps now with my new wheelchair that I can use it to get around inside. I also have my Flexzi that goes on my bed rail so I can use my iPad hands free in any position when sat up or laid down when I’m in bed. Or my nible that helps me open things so easily. My aids literally help me so much in so many different ways and I have too many to list here!

I think I’ve just proven to myself that I can make living on my own work and I will have the inevitable wobbles. We all have our own life wobbles whether that be about out our career, or debt, or relationship issues etc, For me my wobble is my health.

There is always a solution. Like when I found I couldn’t manage the cleaning I employed a cleaner an extra costs like this are what my disability payments are there for to enable me to live my live and not struggle with the extra costs I have because of my disability.

I feel so proud of myself for how far I’ve come over the last few years. I’ve made living with chronic illnesses and disabilities work despite the challenges and wobbles.

I feel the word to describe my life living independently is thriving! I truly feel that I am thriving living on my own. I’ve gained so much more confidence in my ability to live independently despite the wobbles and many challenges I face daily. I’m still here, I’m finding ways to live here and I hope to live here for some time. - Mostly because the decor is so ‘me’ and because of the adaptations plus I’m just so happy living here too. 

Resources 

• Read more about M.E.
• ‘Severe M.E.: A Guide To Living’ by Emily Collingridge - a great book that I’d highly recommended 
• Post Exertion Malaise
  
• ‘M.E. & Me’ - short documentary, BBC Three - definitely worth a watch 
  

Broken batteries: Living with M.E. and EDS

May is both M.E. and Ehlers-Danlos Syndrome Awareness Month! (Though awareness should be all year round).

It’s incredibly hard to put into words to reality of living with M.E. and EDS, especially both conditions together. Both conditions come with a lot of chronic fatigue either because of the fatigue itself or other symptoms triggering me to feel tired like being in constant pain as well as medication side effects making me feel tired out. It also doesn’t help when symptoms keep me up at night meaning I don’t have refreshed sleep. Then during the day my batteries are constantly feeling drained so I’m feeling exhausted all day no matter how much I rest and take it slow.

M.E. and me

I became unwell after a bad case of the flu around February 2012 but I wasn’t diagnosed with M.E. until July 2017.

Living without a diagnosis was so incredibly difficult. I didn’t know why I couldn’t snap out of being tired and why no matter how much I rested my batteries were still broken or other symptoms that I experienced too that I couldn’t explain to other people nor myself.

My GP kept telling me I had Post Viral Fatigue Syndrome and with rest I’d soon be well again. I’d rest but I’d never feel better each time I was told I had PVFS. I felt so incredibly frustrated with myself and my broken batteries.

Once I was diagnosed I was able to stop blaming myself for things like why I felt so exhausted all the time or why my batteries wouldn’t ever fully recharge. Alongside all my other unexplained symptoms.

Back then my M.E. was moderate but over time in particular in 2018/2019 my M.E. slowly declined and my M.E. became Severe. Being made to do Graded Exercise Therapy also contributed to my decline.

Today my M.E. is still Severe. I had good and bad days but I’m struggling to manage it. I’m hoping I can get a referral to a specialist service but it’s proving hard as there’s no service in my area and it’s trying to find a service that will take out of area patients.

Around 1 in 4 people with M.E. will have Severe or Very Severe M.E.

M.E. is basically a neuro-immune illness that’s multi systemic meaning that it affects lots of different aspects of the body. - Read ‘What is M.E.?’

EDS and me

My EDS was picked up when my neurologist assessed me for M.E. He referred me to an EDS specialist rheumatologist.

There are 13 types of EDS; initially the consultant thought I might have Vascular EDS so I was sent for genetic testing but I didn’t have all the markers so I was diagnosed with Hypermobile EDS but I do still have some traits of vEDS.

EDS is a hereditary connective tissue disorder, so I was born with it. When I got diagnosed it was like joining the dots of all the injuries I had as a child and being good at doing ballet and yoga and having a spinal curvature too. I could see signs of me having it all my life but it was always just dismissed by doctors as ‘growing pains’.

hEDS is more than ‘just being bendy’, yes you are hypermobile but the faulty collagen than makes up most of your body causes other issues too. Joints that easily sublux and dislocate, problems with the functioning of organs, dysautonomia (also a symptom of M.E.), dental problems, pain, fatigue, easy bruising, poor healing, difficult IV access, digestive problems and more.

Broken batteries 

I use this term because my batteries are broken. I can never fully recharge my batteries even after a good night’s sleep as I still wake up feeling exhausted. Even resting in the day doesn’t recharge my batteries, it just stops my battery drainage for a little while. I also can’t replace my broken batteries either for new shiny fully recharged ones unfortunately. Believe me I have tried so hard to fix my broken batteries with so many different strategies over the years. So, instead, I must just accept that I live with Energy Limiting Illnesses.

I’m fortunate enough to have my own little bungalow that has been adapted for me - read about how my home has been adapted. Some equipment I have is a profiling bed with airflow mattress and a bath lift, these make life and my broken batteries a bit easier to live with.

Having broken batteries doesn’t just affect you physically it affects your mental wellbeing too. You get sick and tired of being sick and tired. Or tired of being tired. Plus because of my broken batteries and other symptoms I spend so much time inside and in bed and that gets to my mental wellbeing too. My Batec gives me freedom when I’m having a day when I have the energy to go out and it really helps my mental wellbeing. My Batec is also a great boost for my batteries as it reduces my battery usage compared to pushing my chair and it allows me to go places I can’t push myself or on days when my batteries are too low to self-propell.

I also use a light weight wheelchair with some customisations to make it easier to push as my broken batteries mean I’m not so strong as well as weak shoulders due to my EDS. For example I have gekko grip on my push rims and with my chair being ultra lightweight it makes it much more possible for me to push and these two things make using a manual chair possible for me.

Having broken batteries it’s a constant fine line to manage what little energy I have and to not over do it and for my batteries to completely run out of charge causing me to crash. 

In M.E. language a crash is when you have an exacerbation in symptoms and my batteries are completely broken. I can have a mild crash when I’m just more tired, in more pain, more hypersensitive, I struggle with my speech more because of brain fog and my cognitive function is worse etc. Then I could have a big crash where I cannot move or talk, I’ll need help to drink and eat, I can’t tolerate noise or light at all, not even an audiobook for company. Even the gentle movement of my air mattress is so painful (and with this mattress I don’t even lay on the tubes of air but on memory foam). - This is me at my very worst but I still get times when my batteries are broken and I’m too tired to talk and I just have to lay in bed with an audiobook for company and my pain levels are high and I’m needing more support from my PA/carer to to tasks.

I can also do too much or have bad days with my EDS too meaning I have faulty battery days.

I will admit that I’m not very good at managing my batteries. I easily boom and bust only resting when my batteries are completely dead which doesn’t help with the Post Exertion Malaise and feeling crashed towards the end of the day in the late afternoon and evening.

I do find that my bullet journal helps. I can plan my day and what needs doing and I’ll also write in prompts to rest to do as well during the day. I don’t find resting recharges my batteries but I find just laying and listening to a soundscape just allows my batteries to just stop so I’m able to carry on.

I also find using the traffic light system on my to-do list good too. Green = low level activities, orange = okay activities, red = challenging activities. I find this helpful for managing my battery levels. As I’m not doing lots of red tasks crashing my battery levels but instead I’m balancing my battery life with for example a red task followed by a green task or a rest to ensure I don’t overdo it. - Read about pacing, activity management and rest this information is helpful to anyone with any chronic illness/disability.

I think the idea of broken batteries is relatable to most illness which involve chronic fatigue. I find when I talk about my M.E. and EDS saying my batteries are low is a good explainer for why I’m feeling exhausted. It also makes it more lighthearted and also more understandable than Spoon Theory which a lot of people in the chronic illness community use but people outside this community don’t understand it I’ve found.

Book recommendations

Lastly I’d love to recommend to you the book “How to do life with a chronic illness” by Pippa Stacey it’s a great read on living with a chronic illness including having an Energy Limiting Illness and the book also includes some resources in the form of work sheets that are so so helpful.

This book contains bespoke advice for parts of everyday living that often go unspoken about - from practical advice on friendships, dating, and independent living, to more reflective guidance on rediscovering your identity and learning to self-advocate. Chronic illness affects everybody differently, but we all want to find joy where we can and make the most of what we have. This book exists to help you take accessible steps towards that goal and build a life that truly feels yours.

The book is also available on Kindle and as an audiobook on Audible and Listening Books* 

*which can be accessed for free if eligible.

There is also the joining journal book to this also by Pippa called ‘Pace Your Way With Chronic Illness’. This book is designed to be interactive and fun whilst helping you to learn to live with chronic health problems.

The author Pippa herself has M.E. so in both books I’m sure she’s drawn from her own experiences of having an Energy Limiting Illness.

 

(I’ve always admired Pippa’s rainbow book shelf! It’s something I aspire to have in my own home.)

Using a manual wheelchair and a Batec

This is a post for another day but there are different mobility aids for everyone, even people with the same illness. Some people like myself also use a mixture of mobility aids to meet their needs depending on their symptoms at thar time or for certain occasions like leaving the house or going longer distances such as when shopping.

Best of both 

Having both a manual wheelchair and my Batec wheelchair power attachment I feel like I have the best of both worlds. I can use my chair manually when I’m able to like around my home. Then when I can’t push my chair such as when I’m out my bungalow I can attach my Batec and zoom off. This means I don’t have to struggle pushing my chair and my Batec allows me more freedom and independence.

I definitely wouldn’t manage without my Batec and my wheelchair and Batec really go together. I definitely couldn’t be a manual wheelchair user without my Batec either. Even just going out to the post box I couldn’t manage by pushing myself. My Batec enables me to do so much more.

One of the reasons why I got at GTM wheelchair is because they are so compatible with Batec’s.

Using a manual wheelchair 

For me when it comes to my wheelchair I use a manual wheelchair with some adaptions to make it easier for me to use.

In my years looking into buying a wheelchair I did look into folding electric wheelchairs but they just didn’t ‘click’ with me. I didn’t like the standard seating and just sat with a joystick to move around, though very energy saving for me just didn’t feel like it fitted with me.

I’d tried out some manual wheelchairs and they felt more ‘me’ as I liked being more mobile but I hadn’t yet fully made my mind up on going for a manual wheelchair and electric wheelchairs were still on my mind.

When I got my demo with an ultra lightweight manual wheelchair I realised that actually I can push myself. It also helped that the demo chair’s push rims were gekko grip push rims so it made me also realise with additions like this it would aid my ability to push a manual wheelchair. That’s how I ended up with my GTM Mustang manual wheelchair. (Just to cut a long story short).

My GTM chair is very lightweight making it so easy to get around in. 

Some of the additional customisations I went for are large push rims with gekko grip. The push rims are Carbolife Curve L so they’re ergonomically shaped making them so comfortable and supportive.. Going for the larger size even though my hands are small I find them easier to grip especially if my hands are in spasm. The gekko grip is amazing and such a great addition I don’t know how I’d push my chair without it. It’s so amazing, I can even push my chair with my hand in a fist or with the heel of my hand. 

I also got Spinergy wheels for my chair which are really lightweight wheels. The lighter the weight of my chair the easier it is to push.

I like having a manual chair as it keeps me active and I like to feel active in my chair. While I’ve got the ability to be in a manual wheelchair I want to be able to use one. I’m doing a lot of work with my physiotherapist to help me strengthen my arms and shoulders so I can get around in my chair.

It is still very exhausting and difficult sometimes though. I do known that maybe one day I might need an addition to my chair like a Smart Drive which is a power assisted device for wheelchairs that I’ve looked into. It’s a bit like a miniature Batec but it helps me push my chair.

My Batec

I have the Batec Mini 2. There are different models of the Batec depending on what you want to do with it. My Batec can be folded up which makes it easier to transport and store.

My Batec attaches to the front of my wheelchair. Under my wheelchair I have a bracket to dock the Batec so it can attach and detach. It literally takes less a minute to attach or detach my Batec from my wheelchair it really is that easy.

I got my Batec before I got my GTM chair but getting my Batec made me realise just how much I really needed a new wheelchair. I made me realise how my previous NHS wheelchair really wasn’t meeting my needs. I’ve had my GTM chair just over a month and it’s really changed my life. It’s also a lot more comfortable to ride with my Batec too.

Having my Batec is amazing and has really helped my mental health. I’m not able to push myself around to go out for some fresh air but now I can. I’ve even gone along on a bike ride with my Dad on my Batec and I was easily able to keep up with his speed!

I also love the suspension I have in my wheelchair and it’s so comfortable to ride in my wheelchair with my Batec.

Having a Batec is essential for me. I was so lost without it when it was out of action until it was fixed. Without my Batec I was unable to leave the house.

I also find my Batec more sociable. It’s nice to be able to ride alongside someone like when I’m pushing my chair alongside someone just like you do if you were walking together, only I’m in a wheelchair.

What I’m loving lately… April

What I’m reading…

I’ve just finished reading ‘In Bad Faith’ by AL Fraine. It’s a crime detective novel. I rated it 4/5 I quite enjoyed it and it was well written and the storyline was good. I was just a bit disappointed with the lack of bodies to say that the killer was supposedly a serial killer killing off homeless people but there was just the one body in this book. I did like the layout of the book, the font and line spacing. I’ve now just started reading the sequel ‘Hell to Pay’ so I’m hoping for more bodies in this book. (Yes I know that sounds a tiny bit morbid.)

I love reading in the morning in bed still in the warmth of my duvet with a hot drink.

What I’m listening to…

The audiobook that I’m currently listening to is ‘Eat Pray Love’ by Elizabeth Gilbert. A book I’ve wanted to read/listen to for a while. I was inspired when I saw someone I follow on social media posting that they were reading it on their flight so it prompted me to get round to reading it. (Audiobooks are still reading.) I’m really enjoying this book, especially as I didn’t realise that it was based on true events. I thought the book was a novel until I started reading/listening to it. I’m even more keen now to watch the film version once I’ve finished this book.

What I’m watching…

I’m now watching ‘9-1-1’ on Disney+ as I’d finished watching all the seasons of ‘9-1-1 Lone Star’. That one was based in Texas but ‘9-1-1’ is based in L.A. I like to have a drama on the go to watch to get lost into.

I’d love to rewatch ‘Greys Anatomy’ and then go onto the seasons I haven’t yet watched of that especially as all the seasons are available on Disney+ including the new release seasons.

Another drama I’m loving that I’d highly recommend is ‘Good American Family’ it’s based on the true events on Natalia Grace and the Barnett family told from multiple viewpoints. I’d watched the Natalia Grace documentary on the Discovery Channel but it’s interesting seeing it put into a drama. I’ve watched all the released episodes so far so I’m eager for the next episode to come out.

I’m also eagerly awaiting for season two of The Secret Lives of Mormon Wives to come out which should be soon hopefully as it said it was being released in Spring. 

I also loved watching ‘Undercove Underage’ on Discovery. (I’d highly recommend it; there’s two seasons to watch). It follows SOSA’s undercover operations to bring down online child predators by using adult decoys acting as minors online. They are a highly sophisticated organisation and work with law enforcement at every step so they have a 100% track record for convictions. SOSA have now moved onto YouTube ‘SOSA Undercover’ and have brought out a new series on there so I’ve been enjoying watching that too.

I’ve also been watching some other YouTube videos as well. I watch a mix of things, documentaries/TV shows, vlogs, lifestyle videos, disability related content, crafting tutorials, organising type videos etc. I watched a couple of vlogs based in Japan and I’ve followed a couple of channels with content based in Japan in them. So one channel is a content creator who lives in Japan and does life in Japan videos and the other was a content creator who vlogs about being a medical student and she did a year abroad in Japan. As a result of watching some of these videos the algorithm on YouTube is now suggesting a lot of Japanese related videos to me! I’d be interested in watching vlogs in other countries too as it’s been quite interesting and I’ve learnt a lot about living in Japan recently so I’d like to learn about other countries. I think vlogs from people living in those countries give you a better insight into life in those countries as they don’t show you the tourist things but what it’s like actually living there.

Five fab disabled people to follow!

Here is my list of favourite bloggers, YouTubers and writers to follow and why I love them so much.

Gem Hubbard

aka WheelsNoHeels

Gem is my top person I think you should follow especially if you’re a wheelchair user. Her channel has really helped me as a wheelchair user in so many ways from wheelchair skills, accessories for your wheelchair (I absolutely love my LapStacker) and just general wheelchair lifestyle content. Her ‘buying a wheelchair’ series when she was buying her GTM Jaguar was also invaluable for me too. Gem does other disability and some non-disability related content too. I love the fun and lighthearted nature of Gem’s content plus how she does it because she enjoys it. There isn’t any ‘and today’s first/second/third video sponsor is…’ like there is now with so many content creators or ‘and today I’m promoting…’. Gem doesn’t do any of this and I really like that.

• ‘WheelsNoHeels’ YouTube channel 
• Gem’s Instagram account  

Hannah Hodgson 

Hannah hasn’t posted anything in a while but I love her book reviews on her YouTube channel. From there I’ve found some great reads. Hannah is also a great and award winning poet and writer. She’s published several poetry pamphlets and a book as well as written many articles. I also love how open and honest Hannah is about having a life-limiting illness and about death and dying and hospice care. She’s very positive about it and outspoken about the subject. I agree that these things need to be discussed and they should be something that we can talk about in a positive way as Hannah does.

• Hannah’s YouTube channel
  
• Hannah’s blog - ‘Hannah Writes a Blog’
  

Pippa Stacey

I find Pippa’s content on her blog and social media’s really helpful and relatable especially as Pippa also has M.E. too. She’s able to do a lot more so she reviews different places for days out with what accessibility features are available. However Pippa also shows that despite the fun days out M.E. is still exhausting and she needs days to rest recover. Pippa is a big advocate for the disabled community and disabled people’s needs especially when it comes to disability and work. Pippa is a big fan of books and a brilliant writer herself. She’s published a few things and countless articles as well as her blog. I love her book ‘How To Do Life With A Chronic Illness’ it was a great guide and resource that I will use time and time again.

• Pippa’s blog
  
• ‘Life of Pippa’ - Pippa’s YouTube channel
  
• Pippa on Instagram
  

Jessica Taylor-Bearman

Jessica is a truly amazing person. She has come out of the darkest depths of very severe M.E. and written a book trilogy about her time in hospital, then home bed bound in one room, to then becoming a wife and mother amazing the people around her with the progress she has made. She is still unwell with M.E. but Jessica still manages to be a writer and speaker when she is able and has two wonderful children with her husband.

Jessica’s books

• ‘A Girl Behind Dark Glasses’
• ‘A Girl in One Room’
• ‘A Girl Beyond Closed Doors’

• Jessica’s blog and website
  
• Interview with Jessica
  

Hannah Deakin

Hannah is a great disability advocate. She does a lot of media work with Scope to raise awareness on lots of different issues. She also has a blogs and writes about a variety of really good topics that are very relatable, especially to younger disabled people. Like with Pippa Hannah also raises the profile of working when you have a disability and the challenges with that. Hannah also reviews days out and the accessibility of the venues. Hannah also does fundraising work and as well as speaking about disability she also talks about siblings grief after the loss of her brother.

• ‘Hannah’s Hope’ - Hannah’s blog
• Hannah on TikTok
  
• Hannah’s Instagram account

My new GTM Mustang wheelchair

Introduction 

I’m absolutely loving my new GTM Mustang wheelchair so far and it’s already making a massive difference to my life since I got it about a month ago on the 5th March. - I will do another update in a few months to say how I’m getting on with it even more as I settle down and hopefully go on a few adventures.

My previous wheelchair 

My old NHS chair was an InvaCare Action 3 chair. I’d had it 8 years so it had served me well. When I first got it it met my needs but the past 3 or so years it’s been more of a struggle for me and hasn’t really been meeting my needs so I’ve been researching different options. Id looked into both electric and manual and demoing different chairs, reading reviews, looking at what chairs other people have, pricing of chairs and everything in between. Eventually I settled on the GTM Mustang manual wheelchair.

It’s a lightweight ridged frame adjustable chair. I got it from Cyclone Mobility.

Read my blog post on ‘Getting my new GTM Mustang wheelchair’

My GTM Mustang: 

Customisations and how it’s benefiting me so far 

My GTM Mustang wheelchair so far has given me so much more freedom and independence compared to my old NHS wheelchair and I can really see it opening up doors to me.

I also love that aesthetically my new chair looks more ‘me’. Plus with it being an active wheelchair when I’m in it I feel like I look more like an ‘active disabled person’ who is independent and capable. My previous NHS wheelchair was more clinical looking and I’d tried to personalise the wheels and I used to love it when people said ‘I love your wheels’ when I was out in that chair but this new chair I feel more ‘me’. - When you’re in a wheelchair it becomes an extension of your body; it becomes part of you. They literally are my legs to help me get around so I feel it needs to look part of me too. My new wheelchair feels like my own pair of designer shoes. (It probably cost a few pairs of Jimmy Choo’s too!)

Choosing a frame was so hard (you won’t believe the dilemma I went through)! After a lot of changing of my mind and deliberation I went for a polished metal frame. - I was actually inspired by Gem’s at ‘WheelsNoHeels’ GTM Jaguar chair frame choice. I’m quite glad I’ve gone for this over a painted frame as in time it won’t get chipped and scratched like paint would.

I also went for all black upholstery and threading (I thought black threading would go better than white as it would blend in) and silver accents, so silver brakes and push rims. I thought silver would look nicer and more feminine than black plus it went with my frame too.

It’s a lot more comfortable to sit in my new wheelchair than it was in my old chair. The seat was designed to help with my hip and back pain. I didn’t want to sit at a 90 degree angle so my backrest is tilted back ever so slightly. My seat is an ergo seat so the back is flat and then it slopes up for my legs (if that description makes sense?) Also having the correct backrest hight has made a big difference. My shoulders have the freedom to move now when self-propelling my chair. Now I don’t have the problems I had with my shoulders that I had before like subluxed and dislocated shoulders and general shoulder pain. 

Having suspension is amazing and so comfortable to ride with on my Batec.

I’m also in a much more comfortable position with my Batec when I ride with that now too. When I got my GTM chair the guy adjusted my Batec to fit with my GTM chair. Before I had to lean forward arms out and I got backache riding my Batec; not to mention the fact that I had zero suspension. Now I can comfortably sit back in my chair the Batec handlebars have been lowered my arms are nice and relaxed so I can enjoy the ride and not get in pain like before.

The only thing I would change is having my feet out a little more as I didn’t know where my Batec bracket would be fixed to under my chair. The back of my legs are touching the Batec bracket however I’ve gotten used to it so it’s not a major problem. 

I do like how compact my new chair is. On my old NHS wheelchair the footplates stuck out so much. With my GTM chair being so compact and lightweight it makes it so so easy to transport. The backrest folds almost flat forward onto the seat. In my PA’s car she can easily put the backrest down and then put the whole chair in the boot. With my Dad’s car we also have to take the wheels off too but my Spinergy wheels are nice and lightweight too. It’s a million times better and easier than transporting my old chair.

Getting around in my new chair is so much easier compared to my old chair, especially because I’m not having to pushing around so much weight. This was one of the big problems with my NHS chair. I can now use my new chair in my home so when I’m really dizzy or wobbly or struggling to walk I can now get in my chair and get around and not be restricted to my bed (when I’m well enough) or be at a high risk of falling. I feel a lot safer now I have the back up option of using my chair in the house when needed. It’s also a lot easier when I go out too. I can actually push my GTM chair outside with ease too which I was unable to do before.

I’m really glad that I went for gekko grip on my push rims - they are a black strip that runs along the top of my push rims. They really aid me pushing my chair especially when my hands are in spasm or my arms are weak. I can even push my chair with just the heel of my hand. It was helpful to be advised it get the strip of gekko as Alex my rep from Cyclone Mobility advised me to get the strip of gekko grip in my push rims (if I wanted the gekko grip) to avoid friction when going downhill (as opposed to getting push rims that have gekko grip all over them). 

I’m glad I reconsidered and went for the large push rims they are fabulously ergonomically shaped making them so comfortable to hold and push my chair. I’m so happy with my push rims. - Originally I was going to get small push rims as I have small hands. The large push rims actually work out much better.

It really helped Alex coming out for a second time as it gave me time to research GTM wheelchairs and chat to some GTM wheelchair users (including Gem who was really helpful). Alex had measured me up and I’d chosen some options but second time round I’d had time to think and reconsider and also be sure that this was the chair for me too. - It was definitely a no pressure sale at all.

I’m also glad that I also decided to go all-in and get Spinergy wheels. I called up after I ordered my GTM chair and asked if I could change my wheels to Spinergy wheels. (This was one thing Gem had recommended to me. Initially I wasn’t sure and thought I’d get them at a later date but I then I thought that I may as well get them with my chair). They add to the suspension (as well as the suspension in my chair and tyres) and are lighter in weight than other wheels. The white spokes also look nice with the silver in my chair.

I’m really glad I also changed the plastic mudguards and footplates for carbon fibre ones as they look a lot more stylish than plastic. I think the plastic would have ruined the look of my chair and made it look cheap. The mudguards go over the top of the wheels so my clothes are well protected from the wheels and splash-back.

One thing that I’m really happy about that I thought I’d have to pay for is inside the front castors they’re silver the match my frame; I thought they’d be black inside. I went for thick castors on this chair as this makes it easier to go over grass, gravel, sand etc. Thin castors get stuck which is the problem I had with my old chair.

Another option I’m glad I chose was the pocket on the back of my wheelchair. It was something Alex said he finds useful on his chair and now I think I’d be lost without mine. It’s a lot bigger than I thought it would be and I can fit a lot inside. I struggled with the small zip so I put a zipper pull on it to help me.

With my chair being such a lightweight chair it allows me to use it with more ease and along with some of the customisations I’ve gone for like with my push rims this enables me to still be able to use a manual wheelchair. Using a manual wheelchair is really important to me as I want to be able to be as active as I can for as long as I’m able to. Maybe in three or five years time I might need something like power assist wheels like a SmartDrive device to help me continue using my chair, who knows? My Batec is also great as when I’m tired and unable to push or in a situation where I need the power of my Batec I can connect that to my manual chair and zoom off. It’s great to have that option between my manual chair and the power assistance.

So all-in-all so far I’m getting on really well with my new GTM wheelchair and it’s really benefitting me and making a huge positive impact on my life overall. I’m looking forward to summer coming and I already have a few places I’d like to go to now I finally have my GTM chair and the long wait for it to arrive was definitely worth it!

Using my bullet journey to organise my life

I’ve been bullet journaling for a couple of years now. I have various layouts to help me keep on top of everything. Since I’ve really gotten into bullet journaling and found how to use it in a way that works for me it’s really helped me organise my life and my health and stay on top of things and reduce my anxiety too. I also get a lot of enjoyment out of bullet journaling too coming up with different creative layout designs.

I had tried bullet journaling in the past but I wasn’t quite sure what I was doing and how to bullet journal so I didn’t stick with it. Then I watched a YouTube video and the person spoke about how they used their bullet journal to streamline their life and health. I saw some of their layouts and it looked helpful and something that would benefit me so I thought I’d give it another try. I looked on Pinterest for bullet journaling for chronic illness layouts but I don’t get much results so I made up what I thought would be helpful. My past few bullet journals have altered to reflect what I’ve needed plus how I’ve developed and learnt more about how to do and use a bullet journal.

About me

I loved doing the a creative ‘about me’ page on the first page of my bullet journal for this year.

I’ve used stickers and doodles to show my favourite things and some words as well. I’ve got things like my favourite animals, colours, tea and coffee, blogging, books/audiobooks and pen palling. Basically it was things I could find stickers for. I’m now just missing a Moomin character sticker, especially if I could get my favourite character Little My. I’ve also written my favourite quote on there as well.

How I use my bullet journal for my health

Year in Pixels 

Fatigue ‘Year in Pixels’

This year and last I’ve done a layout called ‘A Year in Pixels’. I got the idea from my Medical History Passport as one of the page inserts for it is this. This year I’m recording my pain and fatigue levels. Last year I tracked how many headaches and migraines I had over the year. I chose to track pain and fatigue as they are my two main symptoms overarching symptoms.

How this layout works is down the side you have the dates of the month (1-31) and across the top you have the first letter of each month. I have a colour key to score my pain and fatigue levels each day ranging from great to severe: green, yellow, orange or red. For each day’s square I mark the score of how my pain and fatigue levels have been that day.

Doing this for my pain and fatigue will help me notice correlations between my pain and fatigue. I can also notice trends like colours building up in severity and how long severe or great pain or fatigue periods last. It’s quite helpful information to have and might help to use in things like some of my medical appointments. I can also tie it in with the symptom diary I keep too.

Symptom diary

As part of each month’s layout I keep a symptom diary. Each day I keep a record of my symptoms that day and and factors that might affect my symptoms. Sometimes I highlight anything significant such as a particularly bad seizure, a migraine or an M.E. crash.

It’s also helpful for things like medical appointments as it’s a prompt for me to know what symptoms I’ve been experiencing. It’s also helpful for me to track my symptoms too and notice any patters, trends or changes.

Monthly tracking and goal setting and prompts 

On my monthly layout it will vary but in the past I’ve tracked particular symptoms that month. For example pain, fatigue and mood. 

I’ve also set daily reminders and goals. For example daily goals and reminders to rest, do a daily body scan exercise and also my physio exercises. Sometimes I have one daily goal/reminder to do other months I’ve tried to set myself more. I’m also really bad at not doing catheter maintenance so I’ve also tried some months to do a layout to remind me to do it.

Over time I’ve found what has and hasn’t been helpful to include and track on my monthly layout and I’m still adjusting to try and find what works best for me.

Layouts for organising my life

I love doing layouts I find them so fun to do. Every layout I do I always design it differently. I don’t have a go-to design style like some people.

Monthly and weekly layouts 

I love my monthly layout with things like who I need to write to that month, my to do list, birthdays etc. All things I need to remember that help organise my month. It’s a good go-to page. I usually have a tracker or goal setter of some kind too. I might have a few or I might have one; I’m still working on this element.

Last year’s journal was bigger so alongside my monthly layout I drew a month calendar layout to chart key dates, reminders etc. In my journal this year it’s smaller so I’ve struggled to know how to input key dates, daily to-do tasks and reminders. Recently however I saw on instagram a post from someone I know a weekly layout they’d done in their bullet journal. I slightly altered the layout and did it over two pages as well but I think it’s going to really work for me. (Plus more layouts equals more fun designing.)

So what I’m planning on doing now is having my monthly layout, weekly layouts covering the whole month and then a symptom diary for the month and then onto the next month and repeat.

Example of a monthly and a weekly layout

Utility bills 

I have a pay-as-you-go smart meter for my gas and electric. Every Monday morning I log the meter readings for my gas and electric. In my bullet journal I have a one layout for my gas meter and one for my electric meter. I put in the date, meter reading and how much gas and electric I’ve used that past week so I can check my usage and see if prices have increased/decreased. I also log when I top up my meters each month; with how much I’ve added and the new meter total.

I just find doing this helps me stay on top of having a meter for my gas and electric as I can see my weekly usage. It also helps me know better how much to add to the meters when I top them up especially when I’m living on a budget and a fixed income.

Spend free days

Being dyslexic I’m a very visual person. I created this page to motivate me to spend less this year.

How it works is bills and other essentials don’t count. On a day where I spend something non-essential the day gets crossed out. On a day where nothing is purchased the day day gets a coloured mark. For me the more colour I see the more motivated I am to have another spend free day and it’s really helping me think about my spending and buying less.

What I tend to do now though is if I do buy a non-essential making it a spend day I tend to group what I need to buy onto that day to reduce my number of spend days. I am still more mindful of what I’m buying more now though this year and I literally will only buy what I need.

Lists

Like with my memory and anxiety I find my lists help to organise my life. They just clarify everything for me. Like when I can see who to thank after Christmas or a plan to declutter my bungalow or to complete my stash of craft kits it all suddenly becomes clearer and unmuddled. The task whatsoever it is becomes organised and actually now looks doable. I also get a sense of achievement too when I see boxes getting ticked off or coloured in.

Countdowns

I loved doing a countdown for my wheelchair arriving. I started it in my old bullet journal from the day I bought it but it was easier to do the countdown from the start of this year in this year’s journal. Doing the countdown helped me get through the long wait for my chair and towards the excitement of receiving it.