Little things to celebrate

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 recommendation 

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 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.