Friday 31 May 2019

#meandmyME Week 5

Monday 27th May // Day 27: Rest

Most of my days are spend resting in some way or another and despite resting I'm still tired. I refer to this as 'sofa bound' - I probably spend about 95% of my day on the sofa or my bed, though I try to leave my bed for longer rests, napping and sleeping (but sometimes I need to spend all day on my bed).
Rest is really important. It helps me get through the day and to be able to function (just about) the next day. 
After every task I rest. Pacing plays a huge part in this.
If I have something big the next day or two, such as needing to go out with my carers to run errands, appointments etc I have to rest otherwise I'd crash and the PEM will be even worse.
Basically resting is really important when you have M.E. or any illness that involves chronic fatigue.

Tuesday 28th May // Day 28: inVISIBLY disABILED

The vast majority of the time I am invisibly disabled when it comes to my M.E. You may see me sitting or laid down but you don't see the pain or me fighting to stay awake or the chronic migraines and all the other symptoms that I'm dealing with at that moment in time. 
I wear tinted lenses (which people often mistake for me wearing sunglasses), due to photosensitivity/photophobia and migraines, but you don't see why I'm wearing them.
When I'm on my laptop blogging you don't see all the concentration and brain fog and that when you read a post you don't see that it's taken me days or a week to write. (I started this #meandmyME last year and I've been adding to it bit-by-bit).
If I'm out and about you'll see me with my crutch holding onto someone's arm, or more often now in my wheelchair; then my invisibleness becomes more visible, but that's only the tip of the iceberg. Even in my wheelchair you can't see all the invisible M.E. symptoms (or the other illnesses I have). 
It can be had having inVISIBLY disABLED as you feel like you have to constantly make the invisibleness visible such as when I first got ill trying to get a seat in the priory seating or assistance at the train station, (I no no longer use public transport), but I've now learnt that I don't have to do that. If people don't understand or can't "see" my M.E. (or other illnesses) then that's their problem and not mine; I don't have to justify myself to anyone and neither should anyone else with an invisible disability. 

Wednesday 29th May // Day 29: M.E. hasn't stopped me

M.E. hasn't taken away my hope of going back to University, and one day becoming a Child Psychotherapist, it's just that my life is on hold whilst I get well enough.
It hasn't stopped me from studying, I've done an online art foundation course and I've been doing home distance learning courses.
I've had to adjust such as I can't do as much active volunteer or campaign work but I can do a little online or over the phone.
Even though I can't get out an meet people in person I still "meet" people and have friendships through letters.

Thursday 30th May // Day 30: Quotes/Words I live by

'Carpe Diem' - seize the day, which for me is making the most of the day and achieving as much as possible, whether it be read a module of my distance learning work, or just enjoying my carer braiding my hair.

The Harry Potter books are filled with inspirational quotes; a lot of which come from Albus Dumbledore.
"Happiness can be found in the darkest of times, only if one remembers to turn on the light"
There's also an art film called 'Impossible Shoes' and I love all of the lines in that, but there's one quote from that that I like especailly... 
"There are things that are possible
Things that are impossible
But otherwise, 
I think that within my restrictions, 
Nothing is impossible
Imagination is another name for absolute power"

Friday 31st May // Day 31: If I could tell you one thing about M.E....

That we're all a piece of cake and only on portion of that cake is our disability/chronic illness (M.E. in this case) but there's so much more to use than our disability/illness and it's about finding yourself among that even when you feel like you're M.E. has taken over you.

Thursday 30 May 2019

Spread Your Wings - May Birchbox

This month's Birchbox was called 'Spread Your Wings'.
Inside was...

Lord & Berry

Ultimate Lip Liner in Vintage Rose

This is a water resistant long-wearing lip liner with a creamy formula and can also be used as a lipstick.

Through Birchbox I've come to love this brand. The lip liner goes on so smoothly and is really easy to apply and is a lovely shade.

It's only been since I've been getting Birchbox's that I've expanded on what makeup I use. Before I just stick to lipgloss but now I have such a range of lipsticks, crayons, lip inks etc in all sorts of shades to go with different outfits and makeup looks.

Full size
RRP £13


Sakura Hand Balm

Like with Lord & Berry since getting Birchbox's this is another brand I've come to love and I've even treated myself to a few of their products as they just smell amazing.
This is a new scent of the Rituals range and like their other products it smells lovely and it makes my hands feel amazing too.

Full size
RRP £9.90

Beautaniq Beauty

Nourishing Mascara

This mascara thickens, lengthens and brings volume to lashes and nourishes them all at the same time.

I've already got another mascara on the go at the moment so i've put this aside for when I need it.

Sample size
RRP £12


Face Sunscreen SPF 50

Not only is this a sunscreen it's also packed with anti-oxidants and Vitamin E to hydrate and protect your skin. It's got a lightweight formula to leave skin feeling velvety soft.

I've not used this product yet but hopefully when the weather gets nicer I can pop it on and get out in the garden and enjoy the sun and summer and hopefully get a bit of a tan whilst protecting my skin.

Sample size
RRP £17.50

Philip Kingsley


This is a pre-shampoo treatment which adds elasticity, hydration and shine to hair and tames it to be more manageable and reduces breakages.

Using it it really has strengthened my hair and made it shinier and more healthy looking.

Only downsize was even though this was full size I probably will only get about 4/5 washes out of it when you have long and thick hair.

Full size
RRP £9.50

Sunday 26 May 2019

#meandmyME Week 4

Monday 20th May // Day 20: Current view

This is the view from my bed as I'm summoning up the energy to try and get out of bed in the morning. I'm slowly elevating myself upright so I don't have a POTS fainting episode using my electronic mattress elevator (my favourite gadget from my OT) and I have things to hand such as my laptop and iPad, medication, baby wipes and then on my bedside table I have a tumbler of juice and snack bars should I be too unable to get downstairs to the kitchen and a box of other medication e.g. migraine meds, anti sickness meds, inhalers etc. The blinds are still closed hence why there is a pink haze and putting any light on is too much for me.

Tuesday 21st May // Day 21: Assessments (of any kind)

In January I had an updated home Occupational Therapy assessment which led at my house and any difficulties I have within the house and putting inlace any aids or adaptions to help make things easier for me. From that I got a mattress elevator which allows me to sit myself up and lay myself down much more easily. I also got a bath lift which as a lift does it lowers me into the bath and raises me up (though it doesn't magically get me out of the bath).
I've also been struggling and trying and failing to get assessments to help me get a care package so one day I can move out and live on my own.
I also have routine assessments like medication reviews and blood tests etc.

Wednesday 22nd May // Day 22: Help

My Dad helps me out a bit such as if I need an arm to steady myself when walking, preparing and helping me take my medication, washing my hair for me, cooking, helping me up when I've fallen etc. 
I also have carers which help me with anything from personal care to helping me with my my medication, to running errands or going to appointments or just going out for tea and cake.
(I can't leave the house alone so being able to leave to house with my carers for a couple of hours a) makes me feel safe and b) it enables me to leave the house and get a change of scenery and gives be back some independence).
My my wrist I also have something called a CareLink which has an impact detector so if I fall it set off an alarm or I can press the button and it will put me through to someone and I can talk to them and then can arrange for help to come round if need be or call my Dad or Mandy to let them know if I've had a fall etc.

Thursday 23rd May // Day 23: When I wake up

This is usually a drawn out process.
My first alarm goes off at 9am (earlier if I have an appointment, but I try to get appoints in the afternoon). I then lay in bed for a while trying to wake myself up. I take my 9.40am meds then my 10am meds. After my 10am meds I aim to get out of bed. With my mattress elevator I slowly sit myself up so my dysautonomia and POTS can adjust itself and my tachycardia and low blood pressure from going fro lying it sitting up doesn't get set bad.
I then get up, shuffle downstairs and get some breakfast. I then have a rest and watch TV or go back to bed

On a bad day I just stay in bed, I may have the cereal bar I keep next to my bed I'm I'm feeling okay, then I will just go back to sleep.

Friday 24th May // Day 24: Coping/Support

Living with M.E. is really difficult and because of the isolation you don't have a wide range of people in your life. You have good and bad days emotionally with your resilience.
My Dad is supportive, I also have my pen pals and my faith.
To help cope I have things that distract me and things that I find soothing.

Saturday 25th May // Day 25: Big wins

I think my biggest win since becoming ill (even though the M.E. wasn't diagnosed when I first started) was completing my home study Foundation Diploma in Art & Design which will really help me when I'm well enough to go back to University as I now have a balance of art and science based educational qualifications.

Sunday 26th May // Day 26: Describe M.E.

Describing M.E. is really difficult to sum up. Living with M.E. is life living with your life on pause and you're just waiting for your life to get back on track.
You're tired all the time but sleep doesn't make it any bette, but you need to sleep and nap and rest a lot. And when you're tired your brain is all foggy and you can't remember things and it affects your thinking and you can't process things is and everything is slow. And because of the brain fog your brain losses track of things. 
But even when you're exhausted you get insomnia at night and if you do manger to sleep well you wake up feeling unrefreshed.
Sometimes even just lifting your head is too much effort.
And your muscles really hurt really badly. 
Then you get this pressure in your head so you get headaches and migraines a lot. 
Sometimes it's like being really really drunk.
Because M.E. is episodic you can't predict how you will be to an extent. Like you know you'll have PEM but you don't know how bad the payback will be. 
There's also the hypersensitivity. Light and noise are painful - even the sound of your own voice is too much sometimes; smells can trigger migraines, and one bad days even just gentle touches like my duvet hurts. So sometimes you have to lay in the dark and silence.
Walking is difficult, it's too tiring and painful sometimes and it takes too much energy.
You need to be really careful not to do lots of things. You need to be really careful and do one thing and rest.

Friday 24 May 2019

New GP and Complex Care Team

I was having a heck of a lot of issue with my old GP which I didn't feel able to voice and issues mounted up.

Then I got an independent advocate and I was finally able to feel like I had a voice about my care and what was and wasn't working.

My advocate arranged a meeting with Practice Manger of my GP surgery and it was a really positive meeting.

The Practice Manger was going to investigate a few things and I also swapped to a different GP. 

New GP

This week (Wednesday) my advocate and I went to see my new GP; even though we're still getting to know each other my first impressions where good. I felt listened to, he was honest with me, he explained things to me, he wrote things down for me. He explained that unfortunately we lack services locally, which I already kind of know and he said I sort of fall through the gap as my health isn't temporary but I've not got a terminal illness so I'm not eligible for hospice care even though WHO (The World Health Organisation) has changed the definition of palliative care from is just being terminal; end-of-life conditions but to now include serious chronic illnesses.
"Traditionally, palliative care towards the end of life has been offered mostly to cancer patients, but must now be offered for a wider range of serious illnesses" - WHO Palliative Care
But my GP did say that he would have a look to see if there was anything out there for me and he would also read through my notes so he can familiarise himself with my case. 

Unlike my old GP who just sort-of left me my new GP now want to see me every month for half-an-hour to catch-up and keep and eye on things and see how I am.

Hopefully as we get to know each other I hope I will start to feel more supported from a primary care level and it will mean I will get some care in-between my London appointments.

Complex Care Team

A long while ago I was referred to to Complex Care Team and very little happened. When my advocate got involved, like with my GP, she stated to get my care sorted and moving. After that I spoke with my key worker twice and she organised a MDT (Multidisciplinary Team) meeting. Usually with them I'm invited but today was a 'professionals only meeting'. 

My advocate could only briefly update me as she had another meeting but they're going to have monthly meetings to keep my care flowing and hopefully they can arrange it so my new GP can attend the next meeting.

The GP practice is going to call me every week to see how I am and my mental health care co-ordinator is going to call me weekly too.

They're also going to keep in regular touch with he euro rehab centre in Leeds to ensure that I get an assessment for there as soon as possible and then they will mean they can start arrangements for getting me a bed (but I'm trying hard just to take things one step at a time).

Also, they're going to start arrangements for putting together an Advanced Care Plan for me, so when people like the paramedics turn up, or I go into hospital there's detailed instructions of what needs doing and how best to care for me and my care needs and wishes.

Monday 20 May 2019

Living with HSD // EDS/HSD Awareness Month 2019

May is EDS/HSD Awareness Month.

I wanted to do a post on HSD as there's so much out there about EDS (Ehlers-Danlos Syndrome) but little about HSD.

The zebra is the symbol for people with HSD and EDS as we are 'medical zebras' because doctors don't automatically look for conditions like EDS or HSD.

I was originally diagnosed with Joint Hypermobility Syndrome aka EDS Hypermobility Type by my neurologist who referred me to an hypermobility specialist rheumatologist.  As well as the hypermobility type of EDS my rheumatologist suspected I may have vascular EDS so as per the guidelines I was sent of for genetic testing to rule out other types of EDS before giving a diagnosis of hypermobile EDS; thankfully that come back clear. When I went back to my rheumatologist the new 2017 classification had just come in. I met many of the criteria for hEDS but I missed out on two points so I was given the diagnosis of HSD.

In the new 2017 classification they made the criteria for hEDS much stricter than before in an attempt to find the genetic marker for hEDS as all of the other 12 subtypes of EDS already have one (hence why I was sent for genetic testing for vEDS).

Hypermobility Spectrum Disorder is largely an invisible illness. You might see me in my wheelchair, walking with crutches or the braces and splints that I wear but you don't see all the other symptoms and complications that I'm having to deal with.

HSD is caused by faulty collagen. Collagen is the glue of the body and because mine is faulty is causes my joints to be lax and as a result the sublux or dislocation and my organ are too stretchy so I have problems with different organs such as my digestive system, heart and bladder.

It's an incredibly painful condition and because my joints hurt all the time and every movements exacerbates the pain because my joints are so lax. Even putting on a t-shirt or reaching for a plate can cause a a joint to sublux or dislocate! It's also tiring because my body is constantly trying to repair itself.

I sublux/dislocate joints multiple times a week, sometimes in a day and it something that I find never gets any easier to deal with.

On top of that are the complications that I have secondary to my HSD.

I have gastro issues so I have 'delayed gastric emptying' which means that my stomach empties much slower causing me to feel constantly full like I've eaten a 5 course meal even though I only eat small portions; it also causes me to feel nauseous all the time, sometimes leading to episodes of vomiting. Them I have intestinal dysmotility so like with my stomach my digestive system is sluggish and doesn't work as well as it should causing discomfort, cramping and bloating (which doesn't help when you already have IBS).

I also have baller issues which I find quite difficult and it's not helped by my neuro disorder. Because of my faulty collagen my organs are stretcher than normal so my bladder is stretchy which causes it to leak so I have incontinence. This is quite emotionally difficult to deal with and one I hope my specialist can find an answer to.

As well as that I have dysautonomia which is also referred to as autonomic dysfunction so the body's automatic functions like temperature control, blood pressure, heart rate ect doesn't work as well leading to me developing orthostatic intolerance and POTS (Postural Orthostatic Tachycardia Syndrome).

I also have TMJD with is a problem with my jaw joint, again because it's so lax just eating or taking can cause it to slip out of place. Even when I'm just sat watching TV my jaw hurt.

I want to raise more awareness of HSD as there's lots about hEDS and EDS but little about HSD and often HSD isn't taken as seriously or is overlooked compared to hEDS. 
I wrote a post about this which you can find here.

HSD and my other illness all interlink so sometimes it can be hard to work out what's causing what symptom or my illnesses will aqeccct each other for example I'll have a seizure (unrelated to my HSD) but it will cause my joints to sublux or dislocate exacerbating my pain levels.

I live in constant pain; some days I can cope with it and the times the pain will be so immense I just want to curl up and cry.

Other symptoms of HSD is that I injure more easily so I'm forever covered in mysterious bruises. I also have poor vein access - I have on 'good' vein and if that's gone then it's become a challenge; I've had annuals inserted into all sorts of odd areas and often after on blood draw or medication amiss the vein will blow and then it's a hunt for another IV access point.

Another really random symptom of HSD is that local anaesthetic has no effect on me which completes things like when I go to the dentist.

Medication helps me and keeps me functioning and I've found physiotherapy helpful. I'm waiting to start a specialist pain management programme and once my pain is better managed I can go on a hypermobilty exercise programme at UCLH and I'm looking forward to giving hydrotherapy a go. I also find very gentle yoga help me stretch but I have to be super careful not to over do it and cause my joints to sublux/dislocate. As well as medication and physio and yoga I find heat, deep breathing and my TENS machine helps. Occupational therapy has also helped me too.

Once my seizures and other illnesses are better controlled I hope to do an inpatient rehab program for patients with chronic pain and hypermobilty disorders, but I try not to look too far ahead. 

I try to just just take each day as it comes and deal with the challenges that present that day.

I feel very lucky to be under the expert care of specialists at UCLH who within their own field have an interest in EDS/HSD. The travelling is a pain but it worth it.

A few years back I saw my local rheumatologist who told me that EDS is a condition you grow out of! I firmly believe that in cases of suspected EDS/HSDpatients should be referred to EDS/HSD specialist rheumatologist to ensure patients are given the right diagnosis. It's great that there's now more awareness of EDS, especially hEDS but I wonder if in some cases people are seeing professionals like their GP or local rheumatologist who lack to expert knowledge of EDS and HSD and are misdiagnosing EDS when people may have HSD instead or may just simply be hypermobile. (You can be hypermobile and not have a hypermobilty disorder - just look at dancer, gymnasts and athletes.) Especially with the new 2017 EDS classification some GP and rheumatologists may not be aware of this and I know in some cases people are still now being diagnosed with the old classification of EDS Type 3.

Helpful Links:

Sunday 19 May 2019

#meandmyME Week 3

Monday 13th May // Day 13: M.E. has taught me...

... to appreciate and be grateful for the smaller things in life, like someone bringing me a cup of tea/coffee, or letters from friends, or having a good night's sleep or a friend dropping me a text.

Tuesday 14th May // Day 14: Small wins

Getting dressed and getting out of bed!
Before I got ill this used to be just something I did everyday without second thought; now staying in pj's 24/7 would be amazing so finding the energy to get dressed is a small win that I now feel proud of myself for achieving.

Wednesday 15th May // Day 15: Past, Present Future 

Past... I was well (ish, I just had asthma and a spinal curvature so as a child I was familiar with hospitals and my mental health was a challenge and I spent time in hospital). When I got well enough I went to Uni to study nursing and I was leading an active lifestyle - I was a the gym nearly every day having a workout, swimming, yoga or dance classes and I cycled everywhere.
Present... I am mostly housebound or ('sofa bound' as I term it; some days are spent entire in bed) with constant and episodic symptoms. I also have other illnesses alongside the M.E. I try to focus on the positives as much as possible and see that my health is only a small portion of who I am but that's not always easy. I just try to take each day, each hour as it comes. I go through periods where I feel more resilient and then I go through times where I struggle to cope physically and emotionally.
Future... I hope to one day be well enough to return to University, work, and eventually train as a Child Psychotherapist and live my life 'differently normal' though I accept I will aways be disabled and if I can't return to University I'll come up with a Plan B.

Thursday 16th May // Day 16: Bed

My bed and my bedroom are my haven. It is my space to rest, recharge and relax in. 
My bed can also be my life at times in which I spend all of my day and night in.
I have a mattress elevator which is amazing and it makes just one simple thing (sitting up) a lot easier.
My favourite bedding is brushed cotton as it's soft and warm.
I also have some cuddly friends on my bed.
My favourite pillow is my giant square pillow which Mandy made me a Moomin cover for.

Friday 17th May // Day 17: Brain fog

Brain fog is really difficult. Everything is slow and you struggle to think and you can't process things. If someone throws a ball at you it's going to hit you; you can see where you're looking at them but you don't know that they threw the ball til after it hits you. It's also like being drunk , like really really drunk (without the alcohol) and you have slurred speech and you forget words and get things mixed up.

Saturday 18th May // Day 18: I am thankful for

My Dad who helps me, my carers, my friends/pen pals and the professionals who help or have helped me.
I am also thankful my my good days and the things I can do and the gadgets that gives me some independence and help me with day-to-day life even though it's still a struggle.
I am also thankful for my faith which gives me strength to hold out for the good days and know that God has an amazing plan for me.

Sunday 19th May // Day 19: Worst symptom

All of the symptoms are really difficult.
In terms of symptoms I'd say the worst symptom for me is the brain fog and pain. 
I'd also say that the fatigue really difficult to live with especially PEM fatigue as you can't predict how bad the PEM will be and what symptoms will come with it.
Also, it's not quite a symptom, more a result of the symptoms but I'd say the isolation. Especially when you're largely housebound you don't get out to see people as much and it's usually the same faces you see all the time. Letter writing helps with the isolation but it's not the same as having a real person to chat with, especially someone that's there as you're friend rather than say a carer or a parent.
"Half of disabled people say they are lonely, and one in four feel lonely every day." - Sense

Saturday 18 May 2019

Messages to someone newly diagnosed with a mental illness // Mental Health Awareness Week 2019

10 things you should know...

1. It's not your fault
2. Recovery is't linear 
3. Things will get easier over time
4. You will have and good bad days
5. Don't feel ashamed
6. You are not alone
7. It's okay to ask for help
8. It's okay to take medication
9. There is life with a mental illness
10. Hope exists

H - hold
O - on
P - pain
E - ends

There are things that are possible,
Things that are impossible
But otherwise, 
I think that within my restrictions, 
Nothing is impossible
- Impossible Shoes -

Sunday 12 May 2019

#meandmyME Week 2

Monday 6th May // Day 6: Myth busting

  • M.E. is much more than just feeling tired! There are many different symptoms alongside the chronic fatigue and each person is affected differently.
  • You don't have to "look" ill to have a chronic illness.
  • Exercise and increasing activity levels cures/improves M.E. symptoms - wrong, exercise and increasing activity levels can cause PEM which exacerbates symptoms.
  • M.E. is caused by stress - there are many different reasons why a person may develop M.E.
  • It is a psychosomatic illness and can cured by CBT
  • Sleeping makes the fatigue and tiredness better

Tuesday 7th May // Day 7: Joy

There are several things that bring me joy: writing and receiving mail, my faith, getting lost in an art or craft project, or sitting in the sunroom in my rocking chair with a cup of coffee listening to the birds.
Since becoming disabled I've found more joy and appreciation in the small things.

Wednesday 8th May // Day 8: Today I feel...

Utterly exhausted beyond words.

Thursday 9th May // Day 9: Advice (received or to give)

It's okay to rest, learn to pace yourself and engage in self-care. Your illness is not your fault; nor does it define you. There is no cure but you can learn to live with it and mange it; somedays M.E. will will win; other days you will but you need to remember those days and celebrate every tiny victory, even if it is just getting out of bed, or getting dressed.

Friday 10th May // Day 10: Something inspiring

I've come across a YouTuber called Jessica Kellgren-Fozard (YouTube channel link can be found here) and her video's have been really helpful and inspiring in terms of helping me accept and embrace life with a disability/chronic illness as well as knowing that there's more to us than just our disabilities and that I can still do the things I want to do in life; I'll just do them a little bit differently but different is okay; it's what makes us unique and special. 
I'd really recommend checking out her videos, even if you don't have a chronic illness/disability; you might learn some things, like about how the straw ban hurts people! Something that I could relate to as I find straws a huge help and when you're in a cafe and can't life the cup and the paper straw is falling apart it's just so annoying! (Café's should be allowed to have plastic straws in reserve for people who need them!)
Jessica also does videos on non health related stuff which is great as it just shows that there's more to us that our health problems.

Saturday 11th May // Day 11: Pacing

Pacing is is big and helpful tool to living with M.E. it's about learning to juggle your energy levels more effectively. Easy tasks are green, orange are okay tasks and red are challenging tasks, so when you've done a red task it indicates that you may ned too put i a rest break afterwards or follow an orange task with a green task. By pacing it can help to reduce symptoms like pain and fatigue. I got a fab pacing items from Stickman Communications © which helps me to visualise pacing and plan my day out effectively. 

Pacing generally for me involves a an activity followed by a rest. So I'll get dressed then rest, or do half the dishwasher rest and then do the other half. Some things require a longer rests like after having a shower which even with the help of my carer is exhausting. 

It varies from day-to-day. Some days I can do 20 minutes of an activity followed by a 10 minutes rest or switch this around and do 10 minutes of an activity followed but a 20 minute rest.

Then there are days where all I can do is lay in the darkness and silence and any sensory stimulation is too much to bare.

Sunday 12th May // Day 12: Something blue

Saturday 11 May 2019

The Real ME

You might have seen my post a few week back looking for volunteers with M.E. to share their 'The Real M.E.' story for The M.E. Show, a podcast supported by The M.E. Association.

The special edition of The M.E. show sharing Real M.E. stories was published this week. A link to it can be found ⇨ here.

I submitted my recording and just like my 5 minute video for Action for M.E. (a link to that blog article and video can be found ⇨ here) it was hard to sum M.E. up in just a couple of minutes.

It was amazing when I started to listen to the podcast to find that my story has been selected. I cried as I listened, hearing my story and that of others as I could relate so much. I could relate to the pain, the isolation, the shared symptoms and the difficulty in living with such an illness and the lack of understanding M.E. has. 

My submission did get shortened but it summed up an typical day for me and the choices I have to make with the limited energy I have - at the end of this post I'll leave a copy of the transcript.

This week I've participated in two awareness raising opportunities and it's felt amazing to be able to share my story and help bring understanding of 'The Real M.E.'

The Real M.E.

I have my typical days which I talked about and I briefly mentioned my bad days. The days spent in bed in the dark and silence, riddled with pain and a multitude of other symptoms that I can do little about and too brain fogged to understand the most basic of things. To help distract me I listen to something on the lowest volume possible - usually a podcast, audiobook or film just to help distract me. Any sort of sensory stimulation makes the pain worse. 

Usually I can't predict those days; sometimes I can if I've done 'too much' the day before, like going to London for an appointment, but even 'too much' on a typical day can trigger a bad day or a series of bad days.

Often people don't understand why I need so much rest. Even just after getting dressed. People often assume that you're lazy or slacking off or not pushing yourself hard enough, but what they don't understand is the consequences of doing too much and that emphasis their belief that you're lazy.

M.E. is much more than feeling tired or feeling like you permanently have the flu. It's to complex to explain or understand until you live with it.

M.E. turns your life upside down, it leaves you isolated, depressed (by this I mean diagnosed clinical depression), vulnerable, dependant, struggling and fighting for the most basic of things (for example I currently have to pay for carers and I've been fighting to get funding but it's proving an almost impossible task).

Check out my #meandmyME posts each Sunday this month to learn more about well, me and my M.E.


“My day starts off with a bad night’s sleep. I wake up feeling more tired than when I went to bed. It usually takes me about an hour from waking up to getting out of bed. I then have a rest, have breakfast and then my medication. Then another rest before getting dressed.”

“I am usually dressed by midday. My afternoon is then spent between doing twenty-minutes of activity and ten-minute rests. On bad days I switch it around and do twenty-minutes of rest and ten-minutes of activity. I struggle to concentrate on things, so I switch between activities quite frequently.”
“I do things like, watch television, listen to podcasts or audiobooks, write letters, arts and crafts – anything to distract me from the symptoms that I am feeling, especially the pain. But sometimes I am too ‘brain-fogged’ and all I can do is lie in the darkness in the quiet of my bedroom and listen to something on the lowest volume possible.”
“Energy has to be used sparingly. You have to think a lot about what you will do with the energy that you have. Do you spend it on getting a wash or do you spend it on trying to distract yourself from the pain? It’s really difficult to decide what to do with the precious energy that you have – and the energy is precious because you have so little in reserve. You don’t have the bountiful energy that most other people without M.E. have.”
“A lot of plans get cancelled. I’m mostly housebound with M.E. which is very difficult. I’ve gone from a life of being at university studying to be a nurse, to being housebound, struggling to do the most basic tasks, reliant upon people to help me do simple things. This is The Real M.E.”