My thoughts on the International Symbol of Access

My biggest thought and problem I have with the International Symbol of Access (ISA) is that it doesn’t represent all disabilities, I feel that on the surface it just represents wheelchair users when in fact 93% of people with a disability don’t use a wheelchair yet the symbol we use to represent disability is of a wheelchair user. 

As a wheelchair user myself when I’m out and about it does represent me as a wheelchair user, such as where to go and park my chair in the wheelchair space on a train or bus or to park in a accessible parking bay or use an accessible bathroom or Changing Places (the symbol on that has a wheelchair user on it). However it doesn’t represent my other disabilities and as a symbol of access it represents me there in my wheelchair and my needs relating to that, but what about my other hidden needs? They’re not represented within this symbol. How can we have, if at all possible an International Symbol that represents disability as a whole?

The original symbol was first created in 1968 to identify accessible facilities and features such as parking spaces, accessible toilets and spaces on buses and trains. I personally prefer the new symbol that was redesigned in 2010 as it shows an active wheelchair user rather than the static person in a wheelchair in the original symbol. It’s hard to explain but in the original symbol the figure is just sat there not doing anything, but it the new symbol have an active figure seems to symbolise that wheelchair users are active, like were active members of society rather than passive static members of society. I just feel that the new symbol needs to catch on and be used more and be replaced over the original symbol and for the new symbol to be more widely know and recognised as the ISA.

There are many other accessibility symbols out there however these symbols are very niche to their purpose and I feel that they may also not be widely recognised and understood past the need of the user for that symbol or especially by those who don’t have any form of disability or chronic illness. What is good is that these symbols are used universally so are used and recognised around the world.

 People and companies are always trying to come up with ways to symbolise disability and chronic illness more universally. For example the Hidden Disabilities Sunflower Lanyard. Wearing a Sunflower Lanyard will symbolise to others that you have some form of hidden disability; you can also buy cards to attach to your lanyard that names your hidden disability for additional visibility and you can also outline what your access requirements are on your card too to make gaining accessibility and visibility of your hidden disability easier. The Sunflower Lanyard scheme is gaining wider popularity and recognition and stores and other venues like airports, train stations, shops and concert venues are trained to recognise the Sunflower Lanyard and how best to meet the needs of those with hidden disabilities. Companies are also adding signs to their accessible toilets to say that not every disability is visible in recognition that accessible toilets are used by a wide variety of people with a wide variety of health conditions; not just wheelchair user (as is often the assumption as to who uses them).

One of the big problems many non wheelchair users find with the ISA is facing attitudes of ableism and discrimination. Because the symbol is of a wheelchair user some non-disabled people hold the belief that the facility or access feature is for wheelchair users only, for example accessible toilets (hence the move to put up alternative signage on accessible toilets) and also accessible parking. So often I hear of non wheelchair users facing scrutiny and hurtful comments for parking in accessible parking bays because they’re not in a wheelchair, or even because they’re an ambulatory wheelchair user an so can get out of their wheelchair even though all of these individuals are using a valid disabled parking badge which they’ve been awarded. This may be because they can’t walk far and so use one of a variety of mobility aids (which  may differ from day to day for some people), those who a blind or visually impaired, individuals who lack a sense of danger, or even those who have severe anxiety can make a person eligible for a disabled parking badge. All these examples are wide ranging yet the only symbol you see around the parking bays are of a wheelchair user. How could we represent the wide range of need for these parking bays, or on the flip side do we need to educate the public so they don’t scrutinise someone with a disability or chronic illness who isn’t in a wheelchair for parking [with their blue disabled parking badge] who isn’t in a wheelchair?

One store in the UK did try to change this to make their accessible parking spaces more inclusive, however I feel it was done very poorly. By calling their parking bays ‘Less Abled Parking’ yes it did include those that were less able encompassing more people than just wheelchair users to be able to park there that were less able to walk far. However by calling is ‘Less Abled Parking’ it almost feels like disabled and chronically ill people are being called ‘less than’ or ‘less able’, yes individuals might be less able to walk far, but they are not less able in general. It’s almost demoralising using the term ‘Less Abled Parking’ in my opinion.

I think with accessible parking companies need to use signage that represents different disabilities like what has been done to accessible toilets to make the public aware that accessible parking is for more than just wheelchair users. I think this would help with education and reduce discrimination.

 The Visibility93 project set out to redesigned what they saw as the outdated and poorly representative symbol for disability. With there being fewer disabled people in wheelchairs than the rest of the population they set out to create symbols to represent different disabilities and chronic illnesses and came up with an alphabet of 27 symbols each representing conditions from Crohn’s and Colitis, epilepsy, diabetes to depression and more. I think this is a new and creative way to represent different disabilities and chronic illnesses.

I think in conclusion finding a universal symbol to represent disability would be difficult because there are so many diverse disabilities and chronic illnesses out there. Despite wheelchair users being in the minority it is often the most visual thing that comes to a person’s mind when they think of disability. So often in television when a character or background character is used who has a disability the go-to is someone in a wheelchair, the same goes for advertising because it’s the most obvious this for a non-disabled person to understand when it comes to the complexities of disability. I think if you asked most people what they think of when you ask them to think about a disability they’ll picture a person in a wheelchair.

As a society we are also so used to the current ISA to represent disability if it were to change to reflect disability more fairly i.e. hidden disabilities it would only be confusing for non-disabled people to understand what it represents in relation to disability.

A day in my life

Waking up 

9am: This is when my alarm goes off to wake me up, I find it helpful to keep to a routine and wake up the same time each morning. Sometimes I’m awake before 9am, usually because I’m in pain; if I do wake early I just take some pain relief if needed and lay in bed and listen to a podcast or audiobook until its time to start my morning routine. I have an Apple Watch and I monitor my sleep on the Apple Health app, my aim is to get 10 hours of sleep. If I sleep well it helps me to function a bit better during the day; if I don’t sleep well then it makes it harder to function and it has a negative impact on my symptoms.

Recently I’ve been waking up with a lot of neuropathic (nerve) pain in my left hand affecting its function too. I can also wake up with subluxed or dislocated joints as a result of my Ehlers-Danlos (EDS).

9.15am: This is when I take my morning medication. I use a Pivotell® medication carousel that sets off an alarm to help me to remember to take my medication; I also take my pink inhaler which has a lovely floral case from Inhaler Tailor - I like to accessorise medical devices as much as possible to make them look less clinical. I also find it easier to use a spacer with my inhaler. - I log all the medication I take, both regular and PRN (as and when needed) plus every time I use my inhaler on the Apple Health app to help me monitor and keep track of things especially as I get so forgetful, it also serves a great help for things such as medical appointments such as my asthma reviews or when I’m asked what medication I take.

I allow my meds to kick in and then I start to slowly sit myself up. I have to do this because of the problems I have with dysautonomia and orthostatic intolerance, basically if I sit up too quickly my blood pressure drops and my heart rate goes up and I get really dizzy and I’m at risk of passing out. I also have to spend a lot of my time laid or reclined during the day as my body can’t tolerate being upright for too long. This is one of the many reasons why having my profiling bed is so helpful as I can sit myself up in little increments or recline if it gets too much until I’m fully sat up and ready to get out of bed; I can also tilt my bed to raise my legs higher up which helps if my dysautonomia symptoms are playing up. Dealing with a dysfunctional autonomic nervous system (dysautonomia) can be really difficult as there are a multitude of symptoms and things that can go wrong in the body all of which are very unpredictable.

9.30am: Once I’m sat up I put on my CareLink around my wrist, I can press it if I need assistance in emergencies and someone will come through on the intercom box, it also detects falls so should I fall it immediately alerts CareLink. I allowed my body to adjust and I’m able to safely get out of bed - so if I get out of bed before my body is ready and I pass out my CareLink falls detector will be alerted. I then disconnect from my night bag. Next I’ll make myself a coffee and the return to rest in bed. I’ll usually listen to something on my iPad like my audiobook or a podcast and I’ll play a game like The Sims or do a jigsaw puzzle, some mornings if I’m not feeling great I prefer to just lay and listen. - I find my MERU Flexzi iPad stand really helpful, it’s attached to the bar on my bed and allows me to use my iPad more easily especially when I’m reclined or laid down in bed. 

If I can tolerate it I’ll open one of my blinds a bit to allow me to start adjusting to the light, later, once I’m dressed I’ll open the other blind a bit if it’s a day where I can tolerate a bit more light. On my bad days with M.E. or my migraines my hypersensitivity to light is worse and so I find the light painful so I’ll keep my blinds closed.

If it’s a day where I’ve got agency care I’ll get my breakfast around 10am which I usually make the night before to make it easier on my morning routine as all I have to do is simply get my breakfast out the fridge.

I’m not completely my best in the mornings; I usually wake up more tired than when I went to bed which is a feeling often felt by people with M.E., I’m also just generally not a morning person either.

When my PA arrives

I have a PA to support me in the day but once a fortnight I have three mornings when I have an agency carer instead as I’m struggling to recruit PAs. My PAs work for either 2½ or 4½ hours depending on what day it is, agency carers are here for 1½ hours. - I’ll write this as though it’s one of my PA’s shorter days to work so you can get an idea of what I enjoy doing in my free time and also what my symptoms are like during the rest of the day.

10am is the time my PAs Diane or Jo start. (My agency carer usually arrives around 11/11.30am)

My PA will make my breakfast for me, usually porridge along with a drink and we’ll have a chat. Sometimes at this point I’m still not feeling fully awake. After breakfast and chatting for a bit we’ll put the bath on to run (my bath is the slowest filling bath in the world!)

My bath lift

Whilst the bath is running we get my clothes out for the day along with my creams. I have a few creams that I apply which are different barrier creams to prevent me from developing pressure sores. Alongside my creams I also have a hybrid airflow mattress which one of my nurses provided me with and this also helps alleviate my risk of developing pressure sores. - I’m assessed as being a higher risk for pressure sores as my skin is more fragile and I have poor healing because of my EDS as well as this even though I’m not bed bound I still have to spend the majority of my day in bed so the creams and mattress help as a preventative and so far they’ve done their job.

With the support and enablement from PAs/carers I have a bath. I try to remain as independent as I can by doing as much as I can without exhausting myself out with Post Exertion Malaise (PEM) either now or later in the day. I usually what I can manage to do is wash my face and brush my teeth and I help to dry myself too. I can’t tolerate showers as with my hypersensitivity showers to me feel like a powerful painful jet wash. To get in an out of the bath I use a bath lift which is a seat that lowers and then reclines me into the bath and then it will do the reverse to get me out. I’ll get dressed on my bed, to protect my PA/carer or if I have a nurse visiting me I’ll raise up the height of my bed to protect their back so my profiling bed not only benefits me it also benefits those caring for me.

12pm: I’m usually dressed by this time. It’s important to pace everything I do to lessen my PEM, pain, fatigue and other symptoms. My PA will make my lunch along with another drink and they’ll also wash some pots and maybe do some other jobs like load the washing machine, make a hot water bottle, and put a drink in a thermal tumbler for me to drink later.

Afternoon

12.30pm: Is when my PA finishes work. After they leave I’m usually feeling exhausted so I take my hot drink and hot water bottle to bed and I put on a podcast or audiobook. Usually I’ll just lay and listen sometimes on my good days I’ll also do something like a jigsaw puzzle on my iPad or some other low-level activity.

1.30-2.30pm: Later I might have some energy for day’s main activity. Depending on what kind of a day I’m having will decide what activity I do, from a lower-energy activity to an activity that will require more energy for me that day, or spoons if you want to use Spoon Theory. Also depending on how much energy or spoons I have and the activity I can usually do an activity for about 20-60 minutes. I have to keep a check on how I’m feeling to ensure I’m not going to overdo it and bring on PEM which is very easy to do.

PEM can be very unpredictable and you never know how bad it will be or how long it will last for. PEM is one of the main symptoms of M.E.

Some of the activities I enjoy doing in an afternoon might include:

• Writing to a pen pal
• Crafting e.g. kits, card making, iris folding, diamond painting, crochet
• Assembling die cut sets onto cards (a nice low-level activity)
• Colouring
• Activity books like sticker-by-numbers 
• Blogging 
• Doing my nails
• Going out for a ride with my Batec on my wheelchair (if it’s a longer day I have with my PA or my Dad is visiting me)
• Put some makeup on

On a really really good day I’ll also do some of my to-do list such as medical admin and other admin tasks such as emails, telephone calls and form filling, I might also do some very basic jobs around my home that are doable for me and leave the more energy zapping or difficult jobs for my PAs or carers, just things like tidying my craft table or over bed table and cleaning it with and antibac wipe. It’s nice on my really really good days to feel like a home owner by doing simple house jobs it also makes me feel more productive and independent too.

If I do an activity I’m usually pretty exhausted with PEM especially if I’ve over done it and often my pain levels flare up too. I also especially get a lot of pain in my legs with my M.E. alongside hip pain due to my EDS. I also often experience headaches and migraines. When I get really exhausted my immune system can flare up too and I can experience flu-like symptoms as well - this is the Malaise which means generally feeling unwell and feeling in discomfort. All these symptoms often require additional pain relief and other medications to help relieve the symptoms as well as the use of other pain and symptom management techniques.

3pm: by about this point (sometimes it’s earlier) I’m in desperate need to just simply rest. I’ll usually close my blinds as the dimmed room helps as the light only adds to my pain. I put in my noise cancelling AirPods to block out background noise as this can exacerbate my symptoms. My profiling bed helps me get as comfortable as possible. I use the app Calm and I put on a soundscape and I just lay in bed and listen to this to rest. 

On my worst days I’m unable to tolerate any noise so I just put in my noise cancelling earbuds and lay in bed to rest. This can be difficult emotionally as I have no distraction from my symptoms and I just have to simply lay in bed. 

I’ve developed a good setup around my bed to have everything I need to hand for occasions when I’m unable to get out of bed.

Depending upon how I’m feeling and if I’m having a good or bad afternoon will determine how long I need to rest for. On a good day I’ll rest for 30-60 minutes on a bad afternoon I’ll rest until my evening carer arrives around 4-5pm

4pm: On a good afternoon afternoon after I’ve rested I’ll listen to something, a book or some podcast episodes and do a low-level activity, or I’ll watch something on my iPad so it’s still restful-ish until my evening PA/carer arrives. 

Evening care

My carers/PAs get to me around 4-5pm(ish)

On a really good day if I haven’t been out earlier I might go out for a ride with my PA on my Batec for about 20 minutes usually around the area where I live.

Once I’m back from my Batec ride or if I haven’t been out I’ll begin my evening care with getting a wash. Sometimes I’ll have a wash at the sink, on not-so-good days I just use Fresh Wipes to wash or Nilaqua waterless foam cleaner. On a bad day and I’m not up for a wash at all I’ll just get into my pjs. In an evening we reapply my barrier creams again. I like to wash as it helps with my sleep time routine; also washing is important when you have barrier creams on your skin as a build up of cream can cause the skin to break down so it’s very important to keep it washed off before reapplying it.

Afterwards my PA/carer will make my tea for me. On my good days I’ll join in and help where I can like if passing things out the fridge and freezer and deciding my portions. My PAs/carers will do other things for me like washing the pots, drying and putting them away, cleaning the kitchen space, preparing my night time and morning drinks, making me a hot water bottle, setting up my night bag, emptying the bins and recycling box, folding laundry or anything else that I need help with.

On my really bad days my carers will let themselves in as I’m unable to get out of bed. If I’m experiencing a crash (when my M.E. symptoms are worse) my carers will ensure they talk quietly and keep conversations to a minimum. They’ll also be careful not to bang my bed or make sudden noises and to be gentle when helping me into my pyjamas. They’ll keep the door shut and keep the noise down in the front room when preparing my tea and doing other jobs. Additional things they do is ensure my pain is managed and give me pain relief if I haven’t been able to take it myself. They’ll also ensure my Hydrant bottle is refilled for me - this is a litre water bottle with a long straw that clips to my pillow, it means I can sip on water and stay hydrated hands free when lifting a water bottle would be a challenge.

5pm: this is when I take my evening medication.

Evening and bedtime routine 

5-6pm(ish): is when my PA/carer leaves depending on when they arrive. I’m usually pretty exhausted afterwards and ready to settle down.

After they leave if I’m feeling up to it (on a good day) I’ll update my bullet journal for the day. Then I’ll brush my teeth. I keep water wipes and travel face products next to my bed so I usually do my evening skincare routine in bed.

On bad days when I can’t get out of bed or I’m already in bed I’ll just be resting washing or listening to something on my iPad. In terms of my personal care I’ll just skip brushing my teeth as much as I dislike it and I’ll also miss out my evening skincare routine too as I just don’t have the energy as I have to prioritise where the last of my my energy goes.

7pm: I’ll get into bed if I’m not already there. Depending on how I’m feeling I’ll maybe watch some easy watching TV show of for a short while. If not I might listen to a book or podcast I might do a jigsaw puzzle on my iPad at the same time or I might just lay and listen if I’m too tired. My symptoms usually gets worse the later it gets in the day.

8.10pm: is when I take my bedtime medication 

8.10pm-10.30pm(ish): I used to always go to bed at 9pm whether I was tired or not but a few months ago I did a sleep session for people with chronic pain and since then I’ve learnt to go to bed when I’m tired so when I go to sleep varies. Sometimes I’m nodding off at 7pm so I’ll go to bed as soon as I’ve taken my bedtime medication other times it’ll be later.

What I find hard to understand is despite really struggling during the day with chronic fatigue is at night I can sometimes struggle with insomnia. My way of trying to understand my sleeplessness is because my body doesn’t have the energy to sleep. I can also struggle to sleep sometimes due to high levels of pain.

9pm: I try to avoid screens before I sleep so I’ll lay and listen to my audiobook or a podcast. Sometimes I read a book but there are times like at the moment where I lose the cognitive function to do things like read a book, but I hope to get back reading soon.

I find it really helpful to have smart lighting so I can adjust to brightness of my lights with my voice or on my phone/iPad I can also turn plug sockets on and off too; I can also have settings such as ‘evening’ or if I say ‘good night’ to my HomePod all the lights and plug sockets turn off around my home - this makes it easier for me and my carers too. 

I sleep with a body pillow around me, it’s nice and comfortable but it also supports my joints as when you sleeps your muscles relax and that’s when my joints can sublux or even dislocate in my sleep.

I aim to get 10 hours of sleep at night and then when I wake I’ll repeat all of this the next day!

Ways I’ve found to help my pain

September is Pain Awareness Month.

Pain is something I’m all too familiar with. Having Ehlers-Danlos, M.E. and chronic migraines I live in a constant level of pain. My pain levels vary unpredictably throughout the day; there are times when I can tolerate my pain and other times my pain leaves me crying in despair when I’ve tried every option I have to ease my pain.

Because all of my illnesses cause me pain I experience every type of pain there is. I take lots of different medications to help relieve the different symptoms that cause the types of pain I experience, however I’m not a person who just relies upon medication alone. I’ll often try other options first as well as supplement my medication with other things to help manage my pain.

Here are some of the things I have found help to relieve my pain:

Massage

The biggest thing that I’ve found to help relieve my pain is massage therapy. I see a massage therapist called Hollie who specialises in treating people with medical conditions. I see Hollie regularly and very often no two massages are the same as Hollie treats how my symptoms including my pain has been around that time. I also find the time to relax whilst I’m having a massage good for my emotional wellbeing and that has a positive impact on my physical wellbeing including my pain levels too.

Massage therapy also doesn’t have to be painful. Such as for me Hollie works at a pressure I can tolerate and she’s careful around my joints to avoid subluxations or dislocations. As well when my back is being massaged instead of uncomfortably being laid on my stomach I lay on my side hugging a pillow. Hollie’s massage bed is also similar to a profiling bed so she can adjust the bed in a way in which I’m feeling comfortable. She’ll also play the music on a really low volume for my noise hypersensitivity.

Mindfulness & Body scanning

I find mindfulness helps me with my pain. There are lots of different types of mindfulness exercises and different people get on with different ones and I too find some work for me while others don’t.

I especially like visualisation and breathing exercise mindfulness meditations. I also got introduced to body scanning by my Pain Psychologist. Body scanning is a type of mindfulness as it’s being mindfully aware of your body. I find doing a quick body scan allows me to be self-aware of how my whole body feels without fixating on a particularly painful part of my body.

Rest

I find rest really important to manage my pain as well as my other symptoms. I usually rest listening to soundscapes (a type of mindfulness). Resting just allows my body to just STOP doing anything that is physical or cognitive etc and to just switch off for a while, usually 30-60 minutes though sometimes longer. This allows me to then carry on with my day once I’m rested.

Heat and hot baths

I’m a big user of heat to help with my pain. Whatever the weather I’ll use hot water bottles, electric heat pads/blankets, microwave Warmies etc. I have a standard hot water bottle but I also have a YuYu hot water bottle which is a long hot water bottle that I can wrap around my back or stomach or over my hips or shoulders or along my leg etc.

I also find my daily hot bath helps to relieve my pain too. Sometimes I add lavender Epsom salts into my bath to help relieve my muscle pain and spasms and lavender has natural healing properties.

Distraction 

I feel like I’m often trying to distract myself from my pain. I find doing something to take my mind off my pain and other symptoms helps. Depending on my energy levels and ability I’ll do an activity that I can do in that moment from writing to a friend to doing some sort of craft activity to just distracting myself by listening to a book.

Here are a variety of distraction activities you can do in bed - these activities vary in energy usage varying from low to higher level activities 

Pacing and activity management 

Pacing is really key to learn how not to overdo it which can intensify or increase or bring on pain. There are a lot of activity management tools and this previous blog post

Some tools include:

• The traffic light system
• Green: low energy activities 
• Orange: medium level energy activities 
• Red: high energy activities 
• 20:10
• 20 minutes of activity then 10 minutes of rest 
• Creating a daily schedule 
• Creating a good day and a bad day schedule and what each day will involve you doing in terms of types of green, orange and red activities, meals, to-do jobs, meals and snacks, resting etc.

My skincare routine

Monday

On a Monday I use the Elemis Rose Gentle Exfoliator along with the Pixi Rose Glow Tonic mist.

The rest of the week

On all the other days I use the Elimis Superfood Gel Cleanser along with the Elimis Refreshing Ginseng Tonic mist. I use reusable bamboo pads which I use to wet my face before applying the cleanser and also to wash the cleanser off and then I just pop the pads in a mesh bag and was them ready to use again.

I’m not using it at the moment as my skin is a bit sensitive with eczema at the moment but I was using a Magnitone Cleansing Brush which is electric. The charge lasts a while and when looked after well so does the brush heads. I’d highly recommend this cleansing brush as it saves me a lot of energy when I use it and it makes washing my face more effortless so it’s great if you have limited energy or you’re rushed for time with skincare routine. It’s also great for washing makeup off your face.

Once or twice a week I also use the Elimis Lavender Repair Mask.

Sometimes alternatively I use sheet face masks, my favourite brands are Simple, Oh K! and Garnier.

When I’m washing my makeup off at the sink I use these face cleansing cuffs around my wrists which are great as it stops the water running down my arms and like my bamboo pads they can be washed.

Additional products 

My moisturiser is the Pixi Vitamin C lotion. For eye cream I use a product by Bobbi Brown.

I’m not using it at the moment but I also have the Pixi Glow Tonic Serum.

I also use the Pixi Glow Mist to refresh my face during day and also along with my makeup.

Why I use Elimis products 

I always used to use Pixi for my skincare but now I use a lot of Elimis products. I use Elimis as I can get skincare advice and advice on what products are best for me from the spa where I buy them from - I also get a 30% discount so the products come to the same price as what I pay for Pixi skincare products along with loyalty points added to my account.

Severe M.E. Day 2024

Around 1 in 4 people like myself have Severe or Very Severe M.E. - this leaves those people mostly or entirely housebound or bed bound.

What I wanted to say about severe M.E. this year is the chronic lack of services and support there is for people in the UK. It does vary depending where you live but it can be very difficult to access care especially when you can’t travel. Where I live in my NHS no access to services exist at all.

There is also the general lack of understanding from professionals from GPs to hospital staff. I’ve too experienced this. In my last GP appointment my GP had never heard of M.E. and during the telephone appointment she googled Myalgic Encephalomyelitis and then I directed her to a specific M.E. charity’s website for information. There have even been cases when someone with very severe M.E. has been admitted to hospital and due to the severity of their M.E. they have been unable to talk, eat or drink and due to lack of understanding of M.E. and just how severe it can become for some people they aren’t believed and instead are sectioned under the Mental Health Act.

So many times now I see petitions to get individual with severe/very severe M.E. the care they need and desperately deserve whilst in hospital. Such as not being sent to a psychiatric unit or not having their bed raised at the head for tube feeding due to their severe orthostatic intolerance (a key feature of M.E.) or trying to get a transfer to a hospital that is better equipped for their M.E.

Just recently Maeve Boothby-O’Neill who had severe M.E. sadly passed away after being discharged from hospital. Her family felt that opportunities were missed and her death could have been avoided. Read BBC article here

The fact of the matter is that this illness takes lives. It took Maeve’s life and several years ago it also took Merryn Croft’s life too and also Emily Collingridge (who wrote a fantastic resource book ‘Severe M.E.: A Guide to Living’ - lives taken far too soon, and countless other people have also lost their life and countless more people will too. It’s time M.E. needs to be taken more seriously.

Jessica Taylor-Bearman also wrote a great collection of three books. I’ve only managed to read the first one so far as it’s on audio ‘The Girl Behind Dark Glasses’ but Jessica wrote about the severity of her M.E.; how it took away her ability to move, speak, eat and drink but also the mistreatment she received at the hands of those meant to be caring for her from people like her consultant she named ‘Boss Man’ to whom she couldn’t fight back against.

My M.E. has thankfully never become this severe but I have been mistreated by agency carers and I know what it’s like to have doctors and other care staff neglect your needs and not understand your illness or be able to give you the care, support and services you desperately need. 

This all makes me feel invisible and incredibly alone. It’s so incredibly hard having doctors not knowing my own illness, the illness that affects me the most and the one that I’m needing this most help with. Because I’m not getting any support and my GP practice are useless and with the way my M.E. has been worsening a little gradually in all honesty I am scared of my M.E. worsening and not being able to get the help and understanding I need, just like so many others with this illness.

People with M.E. deserve better. We should have access to specialist services regardless of where we live. NICE Guidelines also need to be followed including the part about meeting people with severe M.E.’s care needs in hospital (from my experience because M.E. isn’t always known about so are the NICE Guidelines, or the hospital just can’t accommodate our needs according to the guidelines). Social care also needs to improve and there needs to be more support given to unpaid caregivers.

Finally people with M.E. won’t be forgotten about. We may be out of sight from the world but we will keep campaigning until we get the care we need and deserve. 

Paying for a cure

When you’re chronically ill the vast majority of people would do anything to get well. That was me several years ago even before my health deteriorated to the point at where I am now. I’d been ill for several years and I was desperate to feel even the tiniest bit better; to get some relief from my symptoms and to maybe, just maybe get to a point where I became well enough that I could get my old life back, even if it was just a little bit of my old life back and I was will to do or try anything to get this.

I spent so so so much money trying to get well. More money than I dare think I spent and in the end it was all for nothing and I didn’t get my magic cure. I tried so so hard and I kept going for so long before I realised that I had to stop trying and that what I was doing wasn’t working.

It started out with my stepmum getting talking to a stranger in the free-from aisle in the supermarket. My stepmum and this stranger got talking about her health problems and my health problems and this stranger recommended this private integrative medicine centre and this specialist doctor at the centre that she went to and gave really positive recommendations so she gave the details of the clinic to pass onto me. From there I made an appointment with this doctor. I thought it was worth a try especially as I wasn’t getting much care from the NHS. I’d received my M.E. diagnosis but after this no further care was given to me; I’d felt like I’d been left to deal with my M.E. on my own. At this time and the time of my diagnosis my M.E. was moderate. So yes I was struggling with my M.E. especially and I wanted to see this private integrative doctor to approach my care holistically as I’m more of a fan of this approach to care than the medical model; I also wanted to see what she could offer me and hopefully give me some relief from my symptoms.

I paid for regular appointments with the doctor to talk about my symptoms and she told me about things within integrative and homeopathic medicine that could help with my different symptoms. I paid for medicines that she prescribed such as homeopathic remedies - I’d try one and it wouldn’t help so the dose would increase still no help so then I’d try something else. I was also prescribed herbal remedies such as tea to help with my digestion and another for colds and flu. One herbal remedy did help that was for my chest. I was also prescribed multiple supplements such as an echinacea tincture for my immune system - I still take echinacea I do find I helps my immune system. All these homeopathic medicines, supplements, herbal medicines I had to repeatedly pay for myself to stay on top of what I was being prescribed.

As well as the doctor appointments and all the prescriptions it was also recommended I have acupuncture. What made it feel more credible was the lady who did my acupuncture had a BSc in Acupuncture so I felt in safer hands. So on top of everything above I paid for regular acupuncture too. As well as the acupuncture I was also prescribed massage therapy so that was an even further regular expense that I paid.

Another hidden expense was the fact that I can’t drive due to my seizures so the vast majority of the time I paid for taxis to and from my various appointments at this integrative health centre.

I also once had a session with the nutritionist at the centre and started the macro diet she recommended me in the hope that would help my fatigue. She did offer for a further fee to draw up a meal plan but I couldn’t afford this.

Even though I wasn’t seeing much change in my health I kept going to this centre for quite some time. I think I just kept going for the acupuncture and prescribed massages and seeing the doctor and paying for my various prescriptions and following this macro diet hoping that eventually everything I was doing would soon kick in and I’d start seeing an improvement in my symptoms. I did feel some improvement just a little occasionally but it wouldn’t be a permanent improvement or a significant improvement.

I finally stopped going as the appointment fees kept slowing increasing and it got to a point where one appointment was just too expensive and I wouldn’t be able to financially continue going to the centre.

I think it was then that I realised that financially I couldn’t continue with what I was doing and upon reflection I realised that I hadn’t seen the changes in my health I’d hoped to see when I first set out on my first appointment. It wasn’t until later that I reflected upon how much money I’d truly spent desperately trying to get well and still to this day I daren’t think how much I actually spent, or wasted, trying to pay to get well. Yes I had turned some tests the doctor recommended down because of the cost but then what about everything else I’d paid for. I felt totally gullible for all the false hope I’d been given.

This hasn’t been the last time I’ve paid for something in the hope it will help me. I tried, twice, this gut live good-for-you bacteria drink. This time I paid for it on a discount and didn’t go for it full price as the full price monthly cost would have been too costly. I think I’m a bit wiser now about not falling for the price of false miracle cures.

I think chronically ill and disabled people are more vulnerable to these products and to clinicians who are trying to sell miracle cures because we so desperately want to be well again, or have some relief from our symptoms. These products and treatments are often not cheap and many of us are unable to work or can only work part-time so our income is limited and disability benefits like PIP only stretch so far.

I know a few of my friends, several of which have M.E., have turned to private healthcare to get the care they need because they’re not getting it on the NHS. I know I’ve contemplated seeing a private M.E. specialist myself too for the same reasons. It’s not fair that we’re having to pay or fundraise for own care when we have a National Health Service but often it’s a postcode lottery as to where you live that determines what specialist services you can access - and don’t get me started on GP’s, that’s a whole post for another day.

I still pay for some things, like my massage therapy with Hollie but I now know in reality that it’s not going to be my magic cure and it’s not going to make me completely better. I know that it just supplements my care and I find it helps give me some relief but it won’t make a permanent change or improvement. The same for the supplements I take, they’re just supplements, not magic pills.