Going to College

Going to College

(Corina Duyn 5-9-’12)

Fourteen years ago I was in the process of applying to go to college to study Art Therapy. However, I became ill with the debilitating illness M.E./CFS and had to forgo on the idea. What I didn’t give up on was the wish to study.

A quick tour of the fourteen years that have passed since: The first few years were spend more or less housebound due to the severity of the illness and resulting disability. To be able to live at home, on my own, I eventually received support through the provision of home-help, seven days a week, twice a day. A life saviour, so were the friends that supported me and kept me informed of the life that went on behind the four walls of my house and garden.

Art and writing became another lifeline to help me deal with the limitations and changing lifestyle I was experiencing. I drew eggs, painted birds, wrote in my notebooks about a spider in my bedroom, which was as inactive as I was. Art and writing ‘informed’ me how I could make the most of what I had, to value the environment I was living in. I was able to have a life on paper. In a way I did my own Art Therapy study!

The wish to study continued though, and years later I settled for a correspondence course with the Open College of the Arts. This allowed me to study when I was able, even if this meant just one hour a week. I chose Understanding Western Art. It took me two years instead of the 7 months suggested to complete the course, but it was a proud day when I received my certificate. Studying gave me a purpose to my day. To my week. To my life.

Encouraged by local librarian and the Arts Officer, I translated my art and writing into my first book Hatched. Again a proud moment in my life lived with illness.

Writing became more and more important in my life, as much a tool to help me make sense to my life, as it was a way to use my creative mind. It was an activity I could do with the limited energy I had. All I needed was a pen and paper. I could write lying down needs be. These thoughts resulted into undertaking another course: Starting to Write. I loved it. Again the course took me longer than average. I did it and received very good marks for my efforts. One of my stories won runner up prize at the IWA Writing competition in 2010.

But.

Correspondence courses are solitary activities. I longed to be part of a group to fill the need for social contact. To be part of society. A big aspect of living with M.E. is, in my personal case, that I am very limited in my energy and mobility. This impacts hugely on how much I can do outside of my home.

Going to college stayed a wish. A big wish.

For about a decade I had requested if it would be possible to partake in one class as part of the VEC Art and Design course. For me this would mean a daytime course, in which I could learn about art hands on, be taught, be part of a group and learn together. It would get me out of the house at least once a week, and not just for hospital appointments… It wasn’t to be. You had to either become a full-time student, or not at all. After a while I gave up asking, because every summer I got upset of hearing of people going back to school. Studying. Every September I felt left out. I know that this is a very subjective observation, because of course not everyone is going to college…

In 2011 however, I attended an information day here in town about education and health. I talked with representatives of the VEC, and with guidance councilors and stated my case again: the wish to attend one class.

A few months later I had an interview with the VEC. I was pleased to see that the building had been adapted for wheelchair use. There was a ramp and an elevator to the second floor. The course coordinator and a guidance councilor were present at this interview. I felt understood and was told I was not the only person with this request. ‘Good’, I thought. I felt elated to be listened to and understood. A few weeks later I received a letter from the guidance councilor that the course coordinator had confirmed a place for me. I would start a weaving class, the starting date would be confirmed later. Thrilled! I was going to college! That is was only part time- every second week for one afternoon did not dampen this excitement. Not at all.

But…

I heard from a teacher friend that the courses about were about to start and she looked forward to seeing me in college. I hadn’t heard anything from the college since that letter of confirmation. When I rang, I was told that more full-time students had signed up for the course and there was now no room to accommodate me.

I felt gutted.
Pushed aside.

My teacher friend spoke with the weaving teacher what had happened. She had no problem adding me to the class. In the end I was given a chance to fulfill my dream to study- but it was made clear to me by the coordinator that I was there as a ‘favour’ as an  ‘extra’. This hurts, to be honest, but I didn’t let it stop me from attending class.

I loved the course. I loved going to college, being with other creative minds, learning a new skill, and finding that I absolutely loved weaving. I received very high marks for my work and portfolio. At the end of the school year I asked the coordinator if there would be a place for me to continue the course for the second year. ‘We’ll see. I am not sure.’

No contact was made by the VEC to say when this years course was to start again, and if I did or did not have a place to continue the course. An oversight perhaps?

One point that stayed on my mind in all this was, why make a building accessible for disabled people, but not the courses.

Having attended this college for one year, every second week for one afternoon, when able, made me much more confidence that I can go to college and study.

During the summer I kept coming across a Continuing Adult Education course in UCC: Disability Studies. It caught my eye. It caught my imagination. Here is a course, which might just help me to use my writing in a more focused way. I know a thing or two about living with a disability. I have experienced first hand how society views a person with impairment. My own personal experiences and those from the time I worked as a palliative care nurse and social care worker with people with learning difficulties.

A long telephone conversation with the course coordinator from UCC fueled my enthusiasm for this field of study. I could do this. Couldn’t I?

I place was reserved for me to give me time to sort out the financial and practical issues surrounding this (big) decision.

Finance: I learned that there is only financial assistance available if one attends a full time course.

It is unlikely I will ever be well enough to study full time. So, I had to be creative in finding ways to fund this new direction. I contacted various agencies and disability support groups, and researched student finance in great detail. I believe that this course could help me to play an active role in society, within the restriction of my illness/impairment, and possibly give me some form of income in the future, maybe from writing articles. Yet, like the correspondence course I have to finance this route myself. Society/ Government has not looked outside the box to aid all people who would like to make a contribution to society on their path. This is not a recession related issue. No facilities for people with a disability only able to attend part-time college were made during the so-called Boom-Years.

I was delighted to receive likely support towards fees from FAS, however this was put in doubt yesterday. There is only funding available via this route up to FETAC Level 6, According the Department of Social Protection, this was not clear on the application made my FAS on my behalf. Requests for clarifications were made to the college by FAS but so far no clarity have been given. I hope these issues will be resolved with a positive outcome. Without this funding, about half of the course fee for one year, it is very unlikely I will be able to afford this study. If I do receive this funding, than it is only for this first course year. How I will finance studying next year? No idea.

Of course it is not just the college fees that I have to find to finance this study.

I need physically to get to college. I am unable to drive there. Although I qualify for Free Travel, there is no public transport from my town. I need to ask a driver to bring me to Cork, or to a bus stop half hour away from here. Or hire a taxi to and from the bus stop.

To be able for me to attend the night class, I need to stay in Cork for the day and night. I would have to rest before the class commences and travel back home the following day.

The UCC Disability Support Officer I met last month was very helpful in supporting my wish to study. Transport would be organized to collect me, and bring me back, to my room I will be renting for the duration of the college year. Also I will receive help with practical issues in college, like the use of the library. This is so heartwarming. I felt supported. To be able to receive this support, I need a letter from my consultant to state my disability/illness. I requested this on the same day of the meeting. No letter has been forwarded as yet.

No letter. No support.

On a practical note: I use a mobility scooter to travel any distance greater that a few minutes walk. Over the years I have bought my own scooters as the health board wouldn’t fund one. Their reasoning is that I am ambulant. I can walk. Years ago I was told by the Occupational Therapist (O.T.) ‘it might make me lazy to use a motorized aid…’ This was the general view of the HSE, he told me. That my freedom to move around ends at the end of the street, did not seem to make any difference. Without the scooter, I will not be able to partake in society, to do my own shopping, to go to town and meet friends. (The Mission statement from HSE regarding disability: 6. To help people with disabilities to achieve their full potential including living as independently as possible.). Another section of the HSE is of the understanding that I am not able to walk, as they awarded me so-called Primary Medical Cert, a cert very difficult to obtain, as the criteria are very strict indeed. So one HSE department suggests I can walk, the other does not. I have been given manual wheelchairs over the years, but am unable to propel the wheels for anytime longer than a few minutes. I need someone to push my chair, which again limits my independence.

My scooter needs maintenance or replacement. The use of a working scooter plays major part in me being able to attend college in UCC.

In April of this year a request was made by the Public Health Nurse to the O.T. for me to be assessed again. She made a new request in July stating the wish to attend college and need for a motorized mobility aid. I have not yet received this assessment. It is now September. College is about to start in 3 weeks.

The O.T. did ring yesterday, on request of the Public Health Nurse. ‘We can not do maintenance on your scooter, because you bought it yourself….’ I stated my case again and was told that my file will be looked at in 2 to three months… [1]

I am fully aware that my case is not unique, that there are people with a disability/ illness that have much bigger issues to overcome, like the current decision by the Government/HSE to cut Personal Assistant hours for the Disabled. (Have they any idea?). I am so proud of the people affected who protested at Government Buildings overnight and had this decision reversed.

My story is only a fraction of what is happening- or is not happening- in the world of people with a disability. I believe I can use my voice to add to the debate. I believe that this course in Disability Studies, will aid me to be part of society again. It will fulfill my fourteen year-long dream to go to college. My life has changed utterly since that time, but I have come to terms with the fact that I more than likely will have M.E. affecting my life in a very profound way for the rest of my life. I have never given up on life. I have created a good life within the restrictions put upon me. A life of creativity which will always be part of me. Right now though, I am at a crossroads, a major one. Can society: the O.T. (scooter), Consultant (letter to gain support in college), Social Welfare/Government (finance), help me to take this new path?

I am not trying to argue that just because I have and illness/disability that all my needs need to be met, that all study should be fully funded. What I am trying to argue is that society could at least meet me half way, and not put up any further unnecessary road blocks.

---

[1] * I rang to O.T. to suggest that maybe I can meet him at the hospital instead of waiting for a further few months for a home visit. This proved to be no problem at all. Why was this not suggested by the O.T.?

Really going to college

Following on from going to college:
After an amazingly turbulent week stuck in the whirlwinds of society and bureaucracy I learned that the funding I had hoped to secure (which seemed to be a absolute yes, months ago) was denied. I am still at a loss to fully understand why. The Department of Social Protection (DSP) (Social Welfare ) had requested clarification on the course level and the awarding body. What eventually came out was that the fact that the course was HETAC and not FETAC (H= Higher, F=Further Education) the DSP was not in a position to pay the grant. But as the same time, in other parts of the country the same DSP had contacted the college to advise prospective students that there was funding available under the very scheme I had applied under.
Confused yet?
I am...!

On Tuesday I decided that there was no way I would be able to fund college, travel and accommodation from my disability Allowance alone. The total expenditure would have been a quarter of my total income. I cancelled my application, with great sadness to be honest.

However I wasn't going to stop studying the subject of the course: Disability Studies, I would just do it on my own, or see how I could get a group together to study in our own time, in our own way.
I felt at piece with this, and found solace in my studio and in my creative ability.

But...
The day after making the decision to cancel and was moving on, I received an offer of total funding for the college fee... I had to think about it for a few hours, but in the end gratefully accepted the offer from this donor. I am not sure yet if I can reveal the source, but I am incredibly grateful for the lifeline handed to me.

When I asked the course coordinator to put me back on the list, she said that she had never taken me off it as she felt that funding would come through from some source or another and if it didn't that it was because I didn't want to do the course.
Now that is faith for you.

link to the full story: going to college

Also met with the O.T. this week. More about this in time to come.

ps... As always it is lovely to know that you stopped by to read my musing 

or follow my creative adventures. 

It would make my day if you leave a comment..

Many thanks & Lots of love Corina

Roller coaster weeks

Where to start...

In my last post about college I wrote how proud I was for having finished my first module in Disability Studies, but also about the challenging experienced in terms of my health.

That same day I visited my GP and had to acknowledge that the course and all that came with it was too much. I felt ill. Exhausted. Full of adrenalin which had kept me going for all those weeks. Still proud and not yet ready to give up, but changes needed to be made.

In fairness the GP was on my side, and together we looked at how I could continue with my course. We looked at medication, and of course pacing.

I did make it to college that week, but only because I had a direct lift to Cork, and did not have to deal with taxi-bus-taxi or another bus... During the lecture, a fellow student asked a few times if I was ok. I slowly shook my head and kept on taking notes, suggesting "don't ask because I am going to cry..." 

All I wanted was to be in bed.

Drawing of me resting © Spark Deeley '09 

And that is what I did for the following weeks. 

A rollercoaster few weeks as I not only did I search for a way how I could still be part of the study but also had to yet again come to terms with the reality that M.E. is the biggest dictator when it comes to my life.

I can have plans but nothing can be achieved without major compromises being made along the way. A sobering thought.

My initial plans for college were to drive myself to the bus, travel to Cork and have a room there. I would stay the night and on the day after the course have the option to go to the campus, or meet with friends. I see now that was rather unrealistic, but I truly thought this was within my scope, as I felt that I was taking the journey in stages and had plenty of times in between to rest/recover. Enthusiasm is a great thing! Maybe the tantalizing notion of independence blurred all reality.

As I have rarely been able to drive during the past few years, I have now come to accept that driving is not within my scope anymore. I am about to sell my car. A car is in a way a symbol of independence, but it has now become more of a liability.

So. Travel to Cork was organised with the support of taxis, kindly sponsored by various organisations.

A little less independence than I craved for, but reality.

Now even that is not reality anymore. I can not cope with this exhausting weekly journey, and be able to sit in class for the evening, and study/read for my course and do the assignments.

Stretched out on the couch, I came up with all sorts of ideas to somehow continue with the course. What eventually came out of it is that all the resources for the travel, and my rent in Cork, was enough to have a direct lift and back to the college on college night. A willing driver, support from college, and funding bodies made this possible. I am soooo grateful. And yet... it hurts a little that I have to give up more of my independence in a way. This might sound ungrateful, but there is very little chance to fulfill my own plans on my own terms.

Last Thursday was the first time I had this direct lift. I was much better. It was lovely to be welcomed back in the class and to reacquaint myself with fellow students and the course material.

What is bothering me though is how I must look like a big "pain in the neck" with all my needs. Living with M.E. is a challenge as it effects every aspect of my being; mobility, brain energy, cognitive issues, stamina. I might seem ok for a few hours, but the fact that it takes days to recover from any activity is not seen by others. Nothing can be taken form granted. It would probably be easier on me and others around me, if I didn't have desires, wishes, plans... But then, if I didn't have this enthusiasm for life and see what I can do with my limited resources of energy and mobility, I possibly would have still be housebound/bed bound. (This has been suggested to me by friends and (complimentary) health practitioners.) 

Throughout the lifetime of this illness, over 14 years, I have set goals, and now see that I always had to negotiate with the illness and myself how I could achieve this goal. It might be in terms of creating art, on having to look at and experiment with different materials and tools which would make it possible for me to create. It might have been in terms of getting outside the door on my own, and after research settled for the use of a rolator and a mobility scooter. 

Usually these challenges are my private concerns.

This time however to achieve the goal of going to college, it meant that I had to accept the help/support in much greater detail from others. Others who don't know me, and are not aware of my life with M.E. to date. Yes, I have needs and I find it a huge mental challenge to acknowledge them, although this might not look like this to others. 

In order for me to continue the course I so enjoy and is so right for me, I have to speak up. I don't want to be that "pain in the neck with huge needs", but glad I did speak up, and ever so grateful for being listened to and having been given another chance to stay in college.

So now, I will follow Robert (Cat)'s advice to rest some more...

As ever, I am thanking you all for your support you have given me. Best wishes to you all.

The stuff of dreams

One of the highlights of this year was (and is) that I fulfilled a dream dating back about 10 years:  Attending college. Albeit only for the one class, every second week, I still see it as a dream come true. I chose Weaving.

First paper weaving

We started off with 'Paper weaving'. We were given colour photocopies of images, told how to cut them into strips how to weave them together. It was quite amazing to see the different works that were created, even if identical pages were used, the end results were totally different. The teacher Pascale explored all our work and showed us the possibilities of design- colour- 'tell a message'- straight lines or strips cut of different width, etc

The Stuff of Dreams' paper weaving

The 'tell a story' option inspired me to create The Stuff of Dreams. I made a collage of my 'dreams' writing-books-art-women-nature. And wrote a piece about my dreams- like attending college and sharing my creativity with others, and woven the two together.

First 'Sampler'

Then it was time to start real weaving. With yarn. On a loom. Made from copper pipe! (see image below). The weaving bug started to sneak it's way into my being....

Second 'Sampler'

For the second sampler, we had to create 'blocks'. And I realized that I am not fond of just plain blocks of colour. I simply  had to explore with interweaving colours to see what weaving can do...!

Hooked!

Third 'Sampler'

Then..  angles were the topic.. and curves. This piece is actually shown here sideways. The straight purple line is the bottom of the work. As I had reached what is now the middle of the piece, I was lying on the couch and looked at my weaving sideways, and was surprised to find that there was a face in my weaving. 

I could see it, but thought that was because of an overactive creative mind... To my relief, the teacher and fellow students saw it too! I finished the piece with curves, creating a kind of headscarf.

As there would be holiday break coming up, so no class for about 1 month, I set up the loom again to have a project to work on over the Christmas... Yes, I am definately hooked.

After a bit of trial and error I started to work on creating a poppy flower. I had taken some bits of yarn home from the college, but not pink, and my poppy was to be pink. As a solution I wound three strands of sewing thread together to make pink about the same thinkness as the yarn, and as a result became even more hooked on weaving. The possibilities of making subtle differences in colour were very exciting.

Poppy to be

I found myself not just weaving for an hour or so every few nights, but also in the middle of the night (during a sleepless night), and weaving on a Sunday morning at 11.30 am, still in my pajamas...

Weaving addiction had started in earnest!

To my horror I realized that I would not have enough green yarn to 'feed my weaving addiction'

I contacted the teacher (now a creative friend) and asked if she could give some yarn to her colleague, another friend of mine, whom I more than likely would meet over the Christmas period.

The response that I got was "Boy, I didn't know I was going to end up being a dealer :-). Sure we'll get it sorted"

My 'drugs' were delivered with the great smile of a VERY satisfied teacher. She had won over one more soul into the world of weaving!

"Weaving drugs" Lots of it!

 * (For more about entering college see here )

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day, if you leave a comment... preferably here, on the blog...?
Many thanks & Lots of love
Corina

From my bed to the Dail gates

Reflections by Camilla Cruise on life with M.E. and the upcoming protest in Dublin (2017) 

The protest involves the patient sending their shoes to the protest 

to represent them as they are other wise invisible and "missing "from life and too ill to attend. 

some of the shoes posted in for the
Millions Missing Event in Dublin

some of the shoes posted in for the
Millions Missing Event in Dublin

It was suggested I write a piece due to becoming involved in #millionsmissingDublin May11th protest for #mayalgicencephalomyelitis patients to get better treatment in Ireland. 

I was left a little perplexed as to where to start with such a task . When I think of my journey since becoming ill, the changes to my life, to my families lives, the struggles ,the constant pain , the heartbreak, the disappointments with medical profession and  neverending frustrations with a sick body , I am overwhelmed with emotion and fight back tears but find it extremely difficult to convey or express in words that adequately describe the devastation Myalgic Encephalomyelitis has had on my life. 

Like so many others I have been lucky enough to meet on my journey with chronic illness, I was someone who was very active and an "up and at em " person. As a single mother most of my life to 2 gorgeous healthy  children I was always on the go hitting the parks, beaches and  surrounding hills , my favourite thing was to just be outdoors and doing something going swimming, day trips, cinema, anything , I didn't sit still for very long. Much the same in my social life always on the go to a live music gig which I lived for , travelling or  dancing away in the corner of the pubs with my fantastic group of friends. 

 I am so grateful now that I was GRATEFUL in my healthy years. I was glad to be alive and healthy and appreciated all that I had in my life every single second for I knew there was too many others around me that weren't so lucky and someday  life would happen to my own family too. Still I hold on to that belief in my heart everyday, despite chronic illness, I am one of the lucky ones.

 I am grateful for so many little things in my life. There is beauty everywhere, positivity to be found everyday . Now it might just be that I managed to get from the bed to the couch on a day, it might be that I can see the sun shining and the sea from the window in my room when stuck in bed , it might be listening to the 2  kids slagging and laughing downstairs when I'm in bed with a migraine again or it might be my lovely friends sending me over a care package or my Angel of a Mum arriving to do some shopping  and housework to help. Forever grateful and thankful for all that I have. 

This is the person that makes me not able to sit just  back and be ill, not able to wait for things to change by themselves in this country and accept the non services from the HSE for ME patients. I am determined. Yes I will and have (as many of the fantastic group of volunteers have ) suffered in my health due to the  physical and mental energy organising a protest takes. 

But to me there is no other option. If we all band together and do  but a small part whether it be posting on social media, have a friend represent us at the dail in their lunch hour OR  send an email to our TDs we can achieve so much. Horrendous as it is that such a sick community has to fight like this with our precious health the other option of doing nothing is worse for us. 

I have been bowled over by the beautiful messages arriving to me everyday this week of gratitude for what WE are doing. We have a wonderful group helping in many  different ways with organization.
Thank you so much.
Its been overwhelming seeing the shoes arrive . Too many lives lost to this mysterious disease , parents lives lost as they once knew it as they are now full time carers to children and adult children , children not able to even attend school and suffering horribly , college students having their wings clipped by ME just as they are about to embark on their adventures of the world, women in their 30s robbed of  a chance of marriage or children , active sports people bedridden in darkrooms. 

Moved to tears many times, this is why we will be at Dail Eireann May 11th insisting Simon Harris and HSE engage with us for change and better services. We deserve better. We are going to get it. It may be a long road but we are  taking the first steps . 

Further details and other stories:

• please visit the Millions Missing Page 

Strength in fragility

Coming face to face with one’s own fragility is certainly not easy, but maybe there are ways to go beyond this tough reality.

As my health has deteriorated further over the past two years, I have to yet again come to terms with actions I can no longer do. Previously manageable activities, such as going out on my mobility scooter, have not been possible since autumn 2017. Also actions like having a shower independently, getting dressed, preparing meals, and even doing my art, are no longer within my reach.

In the early years of life with M.E. 20 years ago, these were not possible either, but over the years I had seen a slow recovery to the point I could, kind of, look after most of my basic needs. This all changed again from 2012 onwards as a result of another severe viral infection from which I never recovered. To be honest fulfilling a very, very long held dream to attend college one night a week in 2013, and traveling to the UK in 2018 to give talks about puppetry and disability most likely did not do my physical health much favours. Both made me quite ill.

But. 
I feel the need to keep living, to not totally succumb to being ill.
I am more than M.E.

I am more than my disability.

I am still me, and find strength in my fragility.

Choices

The Disability Studies course at UCC (2013) was a logical progression in my intellectual as well as creative development. I loved the studies. I loved being at UCC. I loved the world it opened up for me. My assignments, where remotely possible, were focused on disability arts. I read so many books, then and since by others who found themselves (suddenly) living life as a disabled person. I was very interested in those writers who explored invisible chronic illnesses, like M.E.

Many quotes from the books I read then and subsequently made it into my Artist Book ‘Into the Light’. (See  HERE for author/book list of references used in my book)

The studies also indirectly lead to facilitating the Life Outside the Box Disability Arts Puppet Project with my fellow members at the IWA. This project brought the invite to give talks at the first ever Broken Puppet Symposium on puppetry, disability and health in 2017 in Cork. This in turn led to invites to give talks in the UK the following year. Over a month I met some amazing puppet makers and puppeteers, and others involved or interested in puppetry and disability. Although I had constant support from friends, this journey was physically too much. Way too much. But it was a journey of a lifetime, and I am glad I did it! My creative thought process has evolved as a result of this adventure.

 Budget management

I often make the analogy of having the equivalent of €100 in the (energy) bank per day. Staying within this budget is safe. Spending a bit less, will be a saving, a storing up of a tiny bit of energy. But going over the limit one ends up in overdraft. Overdraft is expensive.

Using only half the allowed budget the following day can pay the overdraft back.

Adding more and more to this overdraft by keeping going, the ‘bill’ becomes so big that it would take months and even years to pay it all back.  Being in a constant overdraft can lead to bankruptcy. Those two big decisions of college and travel lead to my partial bankruptcy.

But.

There is a Big But.

These were conscious, carefully evaluated choices I’ve made. Yes I was aware of the risks, but also looked at the benefits. Taking strength over fragility. Physically it was not beneficial. However, I most definitely benefited from both in terms of my mental wellbeing and my creative development and for assuring contact with the world outside my four walls. 
Unfortunately there are other elements which lead to the most recent decline in health: a stroke like illness a year ago, which affected my speech and swallowing, and further lowered my mobility, and increased the need for care. But the two-year long fight with the HSE (our health system) to obtain support to remain living independently at home, and having the right to leave my home with support had possibly a much bigger impact.

I finally got results, but I am convinced that this senseless battle with the HSE caused further decline, mostly on an emotionally and mental level, but as all our health goes hand in hand, it probably also impacted on my physical health and ability. Every activity takes energy, including mental activity.

Fragility 

This senseless battle showed the absolute fragility of my existence. The fact that the care system is set up in such a way that I, as ‘client’ have no real say over my care: who comes into my home, when and for how long, and what tasks can be performed.

I lost the autonomy over my life.

My health at this point in time makes me pretty much housebound. The reality is that I cannot safely leave my home on my own, or have the ability to do so. I also had to adapt to the fact that I require help with very personal care needs.

After two years fighting the HSE I now have a seven-day a week Home Care package consisting of good hours. A few weeks ago I was finally ‘awarded’ the right to also have support to leave my home with support. 

This story can be read on the ME Advocates Ireland Blog and in short in Irish Examiner  newspaper.

Along the way I have indicated to the care agency (who provides the carers, but is not in charge of the amount of hours) which carers I am comfortable with, and those I would not like to have enter my house ever again. Taking back a little bit of control.

All this fighting for basic care and basic living takes huge resilience to keep speaking up, and standing up for my rights. It took all my writing energy to highlight the ridiculous situation I found myself in.

But!

There is a But again.

Strength

Going public with the HSE struggles lead to some amazing comments received from total strangers about my writing ability, for example: 

“I find your writing on disability/illness give a really good insight into living with a condition, even relatable for someone who doesn't. Other writers rarely achieve this. They lack compassion for the reader.”

Now the main HSE issues are resolved (few minor things to sort out) I hope to start writing again for fun, and to share the other stories of (my) life with you. I hope I can live up to the kind quote above. 
Today I meant to write about an achievement of a different kind… to sit on a beach… but that will now have to wait till another day.

Thank you for your continued support and friendship

Corina