Support from readers like you keeps The Journal open.
You are visiting us because we have something you value. Independent, unbiased news that tells the truth. Advertising revenue goes some way to support our mission, but this year it has not been enough.
If you've seen value in our reporting, please contribute what you can, so we can continue to produce accurate and meaningful journalism. For everyone who needs it.
I REMEMBER READING articles on M.E. Awareness Day within the first year of being diagnosed with this debilitating illness.
It was a story about somebody who had this condition for five years. I couldn’t imagine what that would be like. It scared me, to be honest. I didn’t want to hear it. I didn’t want to know about it. I made a drawing: hands covering my ears so not to hear the reality of this very little-understood condition.
I became determined to beat this illness and be recovered within a year, maximum two.
That was 17 years ago.
I am still ill.
M.E. is a serious and potentially disabling chronic physical disorder, affecting up to 12,000 people in Ireland. Of that number, approximately 25% of those would be considered to be severely disabled, rendering them housebound and even bedbound and leaving the individual dependent upon carers for their everyday needs.
Many articles implied that there is ‘no future’, ‘no life’ with M.E.
M.E. has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) since 1969. However, as a clear diagnostic test is still not available, people living with this illness are still experiencing disbelief from society and the medical world.
Over the years, many articles implied that there is ‘no future’, ‘no life’ with M.E. I beg to differ on this view. I did find a life. Not the one I had mapped out for myself, but a good life.
I wake up. I am alive.
Creativity became my way to understand this illness, to see where the boundaries lay, to explore the possibilities beyond illness. My body gave me plenty of challenges. It still does.
After finding some level of recovery, from being housebound to being able to look after myself again, the past few years have seen deterioration again. It is a constant challenge to search and find new ways to work with my body, and to defy it at the same time. But I know we have to work as a team.
In a strange way the illness has granted me an exciting way to be creative. Being creative as, I see, it is not just about making art. Creativity is also to adapt your immediate environment to make it work for you. To make disability aids more fun. To create a garden, and be one with nature.
Being creative is my life.
Advertisement
How creativity has helped me in these challenges
The drawings, collages, small sculptures I made during the first decade or more, were all based on the lifecycle of a bird. The egg – something vulnerable, but capable of becoming a new individual – became my motto. I ‘hatched’ and found my wings to fly.
The artworks were shown at several solo exhibitions and I published three books. I was flying. But not recovering physically.
About three years ago, I finally accepted that maybe I won’t recover. I thought that maybe I could put my precious energy into other things, like fulfilling a long-held dream to attend UCC.
My health was certainly not the best that year. But I did make it to college. One night a week. Disability Studies. A wonderful experience. Although my health was severely challenged throughout, I received a lot of support from various people and organisations, including UCC Disability Support and Irish M.E. Trust, to make this year happen. I am grateful to all.
The study opened my eyes beyond my own experience into the lives of many others living with disability and, to a lesser extent, chronic illness.
I became more grounded, in a way.
It was as if the birds – my companions – had dropped seeds of acceptance, which started to root and grow. The studies were the catalyst to my current creative project. An artist book-in-a-box, called Into the Light.
M.E. is an invisible illness in many ways – I want it to be seen
Again, a huge amount of support has come my way, in the form of grants, including The Rehab Group Visual and Performing Arts Fund. But also in practical ways and moral support. It is truly amazing to be the recipient of all this goodness. This might sound all too good to be true, but trust me. It is true.
Into the Light is a book about the experience of living with chronic illness. Seen through the eyes of nature and art, from personal experience and that of many others authors, ill or not.
The loose pages, with an image of art or nature and a short quote by another author on one side. The reverse has a short observation: day-to-day challenges, society’s views or comments, gratitude, stillness, fear, sadness, and wisdom gained.
My Book will be launched late summer, or early autumn. A Facebook page and crowd funding program has been sponsored by a friend, to help me see this project ‘into the light’.
M.E. is an invisible illness in many ways. Many people living with this condition are housebound. When we are out and about we can look quite well. But leaving our homes most likely results in having to recover for days or weeks afterward, away from society’s eyes.
I am not housebound at this point in time, but do spend the majority of my time at home. Yet, through my creativity, I have made contact with people all over the world.
Living in the darkness of illness, my creativity had brought me out into the light.
Readers like you are keeping these stories free for everyone...
A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article.
Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation.
German election: Huge turnout, young voters turn left and former Soviet east backs the far right
47 mins ago
2.6k
34
your stories
Your stories: Tell us your experiences of accessing services for children with additional needs
1 hr ago
1.0k
german election
Christian Democrats come first in German election as far-right claim second place spot
Eoghan Dalton
Updated
20 hrs ago
31.8k
Your Cookies. Your Choice.
Cookies help provide our news service while also enabling the advertising needed to fund this work.
We categorise cookies as Necessary, Performance (used to analyse the site performance) and Targeting (used to target advertising which helps us keep this service free).
We and our 152 partners store and access personal data, like browsing data or unique identifiers, on your device. Selecting Accept All enables tracking technologies to support the purposes shown under we and our partners process data to provide. If trackers are disabled, some content and ads you see may not be as relevant to you. You can resurface this menu to change your choices or withdraw consent at any time by clicking the Cookie Preferences link on the bottom of the webpage .Your choices will have effect within our Website. For more details, refer to our Privacy Policy.
We and our vendors process data for the following purposes:
Use precise geolocation data. Actively scan device characteristics for identification. Store and/or access information on a device. Personalised advertising and content, advertising and content measurement, audience research and services development.
Cookies Preference Centre
We process your data to deliver content or advertisements and measure the delivery of such content or advertisements to extract insights about our website. We share this information with our partners on the basis of consent. You may exercise your right to consent, based on a specific purpose below or at a partner level in the link under each purpose. Some vendors may process your data based on their legitimate interests, which does not require your consent. You cannot object to tracking technologies placed to ensure security, prevent fraud, fix errors, or deliver and present advertising and content, and precise geolocation data and active scanning of device characteristics for identification may be used to support this purpose. This exception does not apply to targeted advertising. These choices will be signaled to our vendors participating in the Transparency and Consent Framework.
Manage Consent Preferences
Necessary Cookies
Always Active
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms. You can set your browser to block or alert you about these cookies, but some parts of the site will not then work.
Targeting Cookies
These cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information, but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising.
Functional Cookies
These cookies enable the website to provide enhanced functionality and personalisation. They may be set by us or by third party providers whose services we have added to our pages. If you do not allow these cookies then these services may not function properly.
Performance Cookies
These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. They help us to know which pages are the most and least popular and see how visitors move around the site. All information these cookies collect is aggregated and therefore anonymous. If you do not allow these cookies we will not be able to monitor our performance.
Store and/or access information on a device 104 partners can use this purpose
Cookies, device or similar online identifiers (e.g. login-based identifiers, randomly assigned identifiers, network based identifiers) together with other information (e.g. browser type and information, language, screen size, supported technologies etc.) can be stored or read on your device to recognise it each time it connects to an app or to a website, for one or several of the purposes presented here.
Personalised advertising and content, advertising and content measurement, audience research and services development 136 partners can use this purpose
Use limited data to select advertising 106 partners can use this purpose
Advertising presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type or which content you are (or have been) interacting with (for example, to limit the number of times an ad is presented to you).
Create profiles for personalised advertising 78 partners can use this purpose
Information about your activity on this service (such as forms you submit, content you look at) can be stored and combined with other information about you (for example, information from your previous activity on this service and other websites or apps) or similar users. This is then used to build or improve a profile about you (that might include possible interests and personal aspects). Your profile can be used (also later) to present advertising that appears more relevant based on your possible interests by this and other entities.
Use profiles to select personalised advertising 77 partners can use this purpose
Advertising presented to you on this service can be based on your advertising profiles, which can reflect your activity on this service or other websites or apps (like the forms you submit, content you look at), possible interests and personal aspects.
Create profiles to personalise content 37 partners can use this purpose
Information about your activity on this service (for instance, forms you submit, non-advertising content you look at) can be stored and combined with other information about you (such as your previous activity on this service or other websites or apps) or similar users. This is then used to build or improve a profile about you (which might for example include possible interests and personal aspects). Your profile can be used (also later) to present content that appears more relevant based on your possible interests, such as by adapting the order in which content is shown to you, so that it is even easier for you to find content that matches your interests.
Use profiles to select personalised content 33 partners can use this purpose
Content presented to you on this service can be based on your content personalisation profiles, which can reflect your activity on this or other services (for instance, the forms you submit, content you look at), possible interests and personal aspects. This can for example be used to adapt the order in which content is shown to you, so that it is even easier for you to find (non-advertising) content that matches your interests.
Measure advertising performance 127 partners can use this purpose
Information regarding which advertising is presented to you and how you interact with it can be used to determine how well an advert has worked for you or other users and whether the goals of the advertising were reached. For instance, whether you saw an ad, whether you clicked on it, whether it led you to buy a product or visit a website, etc. This is very helpful to understand the relevance of advertising campaigns.
Measure content performance 60 partners can use this purpose
Information regarding which content is presented to you and how you interact with it can be used to determine whether the (non-advertising) content e.g. reached its intended audience and matched your interests. For instance, whether you read an article, watch a video, listen to a podcast or look at a product description, how long you spent on this service and the web pages you visit etc. This is very helpful to understand the relevance of (non-advertising) content that is shown to you.
Understand audiences through statistics or combinations of data from different sources 75 partners can use this purpose
Reports can be generated based on the combination of data sets (like user profiles, statistics, market research, analytics data) regarding your interactions and those of other users with advertising or (non-advertising) content to identify common characteristics (for instance, to determine which target audiences are more receptive to an ad campaign or to certain contents).
Develop and improve services 82 partners can use this purpose
Information about your activity on this service, such as your interaction with ads or content, can be very helpful to improve products and services and to build new products and services based on user interactions, the type of audience, etc. This specific purpose does not include the development or improvement of user profiles and identifiers.
Use limited data to select content 38 partners can use this purpose
Content presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type, or which content you are (or have been) interacting with (for example, to limit the number of times a video or an article is presented to you).
Use precise geolocation data 43 partners can use this special feature
With your acceptance, your precise location (within a radius of less than 500 metres) may be used in support of the purposes explained in this notice.
Actively scan device characteristics for identification 25 partners can use this special feature
With your acceptance, certain characteristics specific to your device might be requested and used to distinguish it from other devices (such as the installed fonts or plugins, the resolution of your screen) in support of the purposes explained in this notice.
Ensure security, prevent and detect fraud, and fix errors 86 partners can use this special purpose
Always Active
Your data can be used to monitor for and prevent unusual and possibly fraudulent activity (for example, regarding advertising, ad clicks by bots), and ensure systems and processes work properly and securely. It can also be used to correct any problems you, the publisher or the advertiser may encounter in the delivery of content and ads and in your interaction with them.
Deliver and present advertising and content 96 partners can use this special purpose
Always Active
Certain information (like an IP address or device capabilities) is used to ensure the technical compatibility of the content or advertising, and to facilitate the transmission of the content or ad to your device.
Match and combine data from other data sources 68 partners can use this feature
Always Active
Information about your activity on this service may be matched and combined with other information relating to you and originating from various sources (for instance your activity on a separate online service, your use of a loyalty card in-store, or your answers to a survey), in support of the purposes explained in this notice.
Link different devices 50 partners can use this feature
Always Active
In support of the purposes explained in this notice, your device might be considered as likely linked to other devices that belong to you or your household (for instance because you are logged in to the same service on both your phone and your computer, or because you may use the same Internet connection on both devices).
Identify devices based on information transmitted automatically 84 partners can use this feature
Always Active
Your device might be distinguished from other devices based on information it automatically sends when accessing the Internet (for instance, the IP address of your Internet connection or the type of browser you are using) in support of the purposes exposed in this notice.
Save and communicate privacy choices 64 partners can use this special purpose
Always Active
The choices you make regarding the purposes and entities listed in this notice are saved and made available to those entities in the form of digital signals (such as a string of characters). This is necessary in order to enable both this service and those entities to respect such choices.
have your say