Moving home

Well I tried. That’s all any of us can do. really hoped it would work out but being in assisted living made the seizures much worse. It culminated in trying new medications which caused a reaction and a bad fall which set off a series of seizures. And then more seizures a few days later. In fact, over 33 since I left my cabin on Galiano, and that’s 3-4 times as many as before.

Just got the X-rays back. Turns out I’ve got a compression fracture from the fall. Yay!

Anyways, I’m grateful for the opportunity to try assisted living. If I were able to be more social and manage more stimulation, it would be perfect. It’s a great facility on beautiful grounds, and the staff are lovely. It’s just not ideal for someone with severe M.E. or a seizure disorder.

I’m glad I tried because otherwise I’d never know but sure am glad to be home.

Happy Holidays One and All! ❤️

Moonbeams, Sundogs & Rainbows

Sundogs, rainbows, Myalgic Encephalomyelitis, Galiano Island

Woke early this morning, the moonlight beaming through the east windows of my little home, not long before the Sun rose through the misty morning in almost the same place.

Sitting outside for a few minutes, feeling the still hazy sunlight warming against the damp, I glanced towards the sun to witness this beautiful sight of a sundog rainbow.

Today I am so grateful for those brief moments of joy. Something to focus on, instead of the fear, pain and exhaustion. They sustain me when nothing else can.

Behind Grey Curtains

BehindGreyCurtains

Behind Grey Curtains

Behind grey curtains,

Breath, damp as Fall mist,

Creeps across flayed limbs.

Pain pearls on parchment lips,

Kissed dry by love from a once-before life.

Now minutes become years,

Years become moments.

The immovable hands of an invisible clock.

Assisted Living and ME 2

I just had to make a big decision as to wether to stay in Assisted Living or move back to Galiano, and my tiny house.

It’s been really hard to know what to do. On the one hand, Ayre Manor in Sooke is a great property with beautiful trees and lovely grounds and nice bright, Sunny, spacious suite, and the staff are all great. It’s close to amenities etc.

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On the other, being here has meant giving up the privacy, independence and peace and tranquility of living on Galiano in my small space. It’s meant leaving my friends, and daily home support, plus family doctor, counselor, and a close-knit community of people for the most part, I admire, respect, and love very much.

When Assisted Living was suggested as an option, it sounded ideal but like everything, there are positives and negatives. Unfortunately for younger folks, Assisted Living residences are mostly set up for people in later stages in life. With that comes certain things not conducive to living with ME

For example everything is really brightly lit, and lights are on all the time. Common areas are particularly loud with TV and media on at high volume day and night. The lovely care staff are used to clients in their 80’s, with hearing and vision loss, not clients in their early 50’s with several contentious, and unpredictable illnesses, including seizures.

I’m finding it’s all too much to handle: the lovely suite is so much bigger than I’m used to, so I get more tired, and can do less. The common areas are bright and noisy so when I spend time there, it causes more symptoms and seizures.

I feel like a fish out of water and it’s nobodies fault; it’s this awful illness that makes something like the smell of someone’s soap cause migraines, or talking for 5 minutes in the common room trigger s seizure, or an allergy to something in the food. Of course some of this is the crash one would anticipate from moving, except it’s getting worse the longer I’m here. Have to be honest, I’m pretty gutted and unsure what to do. I had such high hopes that this lovely building would give me the peaceful environment I need to stabilize a bit

It seems that’s not going to be likely. Anyways I decided to stay another month and see if things improve – hope so! Didn’t have the courage to make a change again so soon or want to be too hasty so here now til the beginning of 2020, unless something changes. Hopefully will adjust to the sensory bombardment and community living better. It’s really much harder than anticipated and it wasn’t as if I thought it would be easy – just thought it would be a slower paced more peaceful environment, but it’s busy and there’s lots going on.

If you’re looking for somewhere to send your folks for more support, this is the place. Really. The staff are amazing. But for me, and M.E. it’s too busy, and not sure I can adjust to the stimulation without another severe crash and burn. So far my seizure activity has been increasing from the over stimulation, and PEM (Post Exertional Malaise) really bad too. Fingers crossed this month will be easier. Thankful the staff here are so kind but hard when no one really has a clue about M.E., or Fibromyalgia, let alone a Pineocytoma! Why would they when most of the doctors don’t either?

I probably should just go back to Galiano. Think the pace of life is sadly about all I can manage, even on my best days, and I really miss the community there. People who have offered kindness and care, and friendship. Those are the things that really matter, and losing them definitely affects the health negatively as well as the mood. I’m grateful for many things. For the opportunity to even have this option, after only 20 years of living and working in Canada. It’s a beautiful facility too. Really friendly staff. Just such a big difference from my beautiful Tiny Home on that very quirky, and deeply, and joyfully insidious island, called Galiano!

Watch ME!

One of the most informative, easy to access videos on ME/CFS that I’ve seen. It’s only 7 minutes long.

In Canada, there are almost 600,000 people living with this devastating illness. We are mostly invisible because we only leave the house when we are well enough to do so.

For many people, it can be years before that happens.

25% of all people with ME are bedbound or housebound for the majority of their illness.

1https://youtu.be/qvagqgJSy5I

Assisted Living and ME 1

Well, it’s been a long time since I’ve posted here. Twitter became an easier place to post for a while. Less personal more prosaic. During that time I advocated successfully for a place in Assisted Living and moved in two weeks ago to a community in Sooke: Ayre Manor.

It’s a little over 500 square feet with a balcony. All of the 25 suites are wheelchair accessible, and there are charging stations outside every front door.

The care staff and management are wonderful, and the suites are bright and airy, with kitchenette, including microwave and fridge freezer however, no cooktop or ovens are allowed, and any other devices must have an automatic shut-off.

Also included are living room, small balcony, good-sized bedroom, walkthrough closet and spacious bathroom, plus other storeage.

My view faces a dense coppice of mixed deciduous and evergreen trees, a hummingbird’s nest in the cedar right outside my bedroom window.

In the evening one can see the sunset over the rooftop, and it’s a nice large property with attractive landscaping, so there are many many gifts and advantages to being there, but my heart is heavy and I deeply miss my home.

So much so most days have started and ended with tears. Hard to manage moving at the best of times but while sick, it’s extra hard on the body.

This weekend I came back to Galiano for Thanksgiving and a friends birthday, conveniently combined. Of course, I wasn’t sure if I would even be able to manage the dinner, out, in a restaurant, with lots of people, but amazingly it went well and a great evening was had by all. Of course Tuesday and Wednesday I could barely move but it was worth it!

It’s been really lovely being back home on Galiano. Even after two weeks, it feels different to be here. I hadn’t realized how detached from nature, and the environment we all are when we live in condos, and houses, and towns, and cities.

It’s very different from living in a 24 by 10 ft cabin on wheels, close to the ocean on a wild, windswept, little Island.

Here you know it’s going to rain long before it does, because you just feel it. And when those first rain drops hit the roof; the first little pitter-patter, so soothing and soft which soon intensifies into a rhythmic pounding, like a heartbeat, raining down upon my head, and there is no feeling cosier, of safer, or more exquisite in that moment, than lying in my bed, tucked under my oversize duvet, listening to that tympany of tears on the metal roof outside.

I feel you Mother…. I’m crying too!

Reaching out …

To my fellow Canadians with M.E./CFS:

Are you also single, and/or without family or carers?

Do you have difficulties being taken seriously by your doctor’s or specialists?

Do you have challenges accessing appropriate treatment, and healthcare?

What about accessible, affordable housing? If so, and you feel able to share a little bit about who you are, and where you live, and how you cope, I’d love to hear from you.

I’m interested in finding out more to see if we can’t lobby the powers that be to improve things for those of us living alone with #MyalgicE.

Open Letter to Vancouver Island Health Authourity: What about M.E.?

600,000 CANADIANS LIVE WITH THIS DEVASTATING ILLNESS AND NO MEDICAL SUPPORT

I am just one of #MillionsMissing all over the world. In Canada, things are particularly bad, with regards to lack of treatment and almost $0 research investment into causes and cures. It’s not OK that we are ignored and denied the same standards of healthcare, or accessible, supported accommodation available to Canadian’s with other illnesses.

There are 600,000 people with Myagic Encephalomyelitis living in Canada. We have the highest instance per capita of any country in the world and yet most of the Doctors and Specialists I’ve seen don’t even believe it’s a real disease. I’ve posted before about this issue, and shared to twitter before; tagged VIHA, who didn’t respond until almost 3 weeks after the original post, and Vancouver Coastal who eventually did, to empathize and share with VIHA.

Empathy won’t get me very far when I’m seizing on the floor!

People with ME/CFS are effectively ignored, and left to manage alone. We have no Health Canada protocols for this illness. No research into causes and cures, and many left housebound and bedbound. That’s NOT acceptable. Vancouver Island Health Authourity has no official protocols for patients with this illness. Nor for providing the same standards of social supports or housing supports available to people with other illnesses. It’s totally unacceptable.

My case manager applied for Assisted Living 4 times and was declined each time by both VIHA and Vancouver Coastal. They say I am not eligible due to my “Unscheduled Care Needs”, which means I don’t fit neatly into their narrow criteria, due to the neurological symptoms, so they send me home and leave me to deal with it all alone.

This is my response to be declined again for Supported Housing/Assisted Living

An Open Letter to Vancouver Island Health Authourity.

My name is Jemma Lee, and I currently live alone on a small Gulf Island in a 240 sq ft Tiny House. I have lived here for almost 8 years. My closest family are in Toronto but most are in the UK. I have no children and no partner, so no-one to turn to for help, except my local GP, Community Care Nurse, and home-support for one hour per day.

I have several severe disabilities, and health issues; which include a Seizure Disorder, Pineal lesion, ME/CFS, and Fibromyalgia, as well PTSD, Orthostatic Hypotension, Sinus Bradycardia, Osteoarthritis, IBS, interstitial cystitis, and Dysautonomia, caused by the ME/CFS and brain lesion. I have vision problems, migraines, and problems walking.

For these reasons, I am on PWD disability, so on a very limited income. Because I have variable mobility issues, I use a variety of mobility aids to get about. An application for a small power-chair was just approved. The chair will give me more mobility and security, and allow me to be more independent.

My cabin on Galiano has a composting toilet, and mini-wood-stove for heat, and is well laid out. However, I need to chop wood for warmth, don’t have access to treated, filtered water, and have to empty and manage the the composting toilet, etc. All of which is now completely impossible. Most days I cannot prepare food, and  do the dishes, take a shower, let alone properly manage my chores and housekeeping, even with one hour of home support services daily.

The issues which have caused me to be declined Assisted Living applications are my “unscheduled care needs” by which they mean the Neurological symptoms I experience, which include a Functional Seizure Disorder, caused by the ME, and the Brain Lesion. The symptoms include Myoclonus, and Dystonia but also focal and full seizures. Last year I had 140 days of seizure activity of some kind. Over half of those days I had more than one episode. This year things are a little improved due to medication, but variable. In May I only had 8 days, whereas in June, I had 12.

Living alone puts me in a very precarious and dangerous situation. I fall frequently as part of my episodes but also because I have very low pulse and blood pressure, also caused by the ME. Its really imperative that I move somewhere ASAP because my health is getting worse, partially due to the physically harsh and demanding living situation, but mostly because I cannot access the support services I need; like occupational and physiotherapists, massage, acupuncture, social worker; and ALL of my many Specialists.

It is very hard to attend appointments in Victoria as it requires someone to drive me as a ‘medical escort ‘because I am unable to travel unattended. It takes all day traveling from 6am to 6pm for a 20-30 minute health appointment. That then causes a worsening of symptoms for several days. Bottom line, I need to be living somewhere more support but also where I can maintain independence so I can maintain some privacy and dignity in my life, and still do the things I enjoy doing when health allows.

At the end of 2018 I became a patient of Dr. Mohamed Gheis and he has a specialist Neurological Rehabilitation program in Victoria, which I cannot attend because the traveling is too exhausting and physically unsustainable. He has written a letter of support for my urgent need for supported/subsidized housing or Assisted Living in Victoria.

Andrea Hamilton our Community Nurse on Galiano Island (who is my case manager); my Family Doctor, Erin Carlson, and Dr. Mohamed Gheis, all feel that I need to be in Supported Independent, or Assisted Living in Victoria/CRD area, so that I can access health resources including treatment program at the newly opened specialist neurological rehabilitation clinic run by Dr. Gheis: as well as have access to all the other specialists, and healthcare services that I need on a regular basis. Plus I previously lived and worked in Victoria for 10 years, and have friends, and know the city well. The transit services in Victoria would be very easy to navigate with the power chair.

I appeal to you to RECONSIDER my application for Assisted Living or work with me to find a solution to this crisis situation, especially given that I am at such severe risk from injury due to the quantity and severity of my Neurological episodes, and living on my own. My deterioration means at some point something really bad will happen unless I get into some kind of supported housing or Assisted Living and access to the treatments I need.

That is surely not helping my health improve, and cannot be cost effective for the Province in the long-term; It certainly isn’t sustainable. You are the only ones who can make this decision. PLEASE HELP ME!
In Desperation!

Jemma Lee

 

Housing for People with Chronic Illness

One of the things that has really hit home since I got so sick is the issue of accessible and affordable housing for people who have Chronic illness and disabilities. I am very lucky because I had already built the tiny house, when I got really sick, and was inhabiting it, so while it’s pretty rustic, and a demanding lifestyle, I have this place, and it’s my safe-haven and my sanctuary. Don’t know how I could afford rent on my income. So what happens when your symptoms become so severe that it’s not wise to stay in your current situation? What do you do?

The community nurse and I have tried several times to get me a place in Assisted Living, as last year (2018) I had 140 days of seizures, with many days more than one episode. Over 50% of those days had more than 4 episodes in one day. The Assisted Living Assessors tell me that I am TOO sick for Assisted Living due to my ‘unscheduled care needs’ (Think they mean my seizures), but apparently not too sick to continue living alone in a partially off grid cabin with no flushing toilet, in a place with no hospital, pharmacy or bank. No transportation, or even street lights. Many days I don’t have enough energy to chop wood for heat, or cook and prepare healthy food for myself, or if I do push myself into the ground doing all the chores that need doing, I have a massive ‘crash’ caused by the exertion, making my symptoms 100 times worse, and spending days or weeks in bed recovering. (I kid you not!).

It’s pretty messed up. Last week I had a seizure so powerful it broke 3/4 of one of my back molars off, and another day I fell and hit my ear and head on an oil radiator. But apparently, it’s safer for me to stay living like this than in an Assisted Living apartment with food, personal supports and home-care provided as needed! So instead, we will wait until something really bad happens. It’s such an asinine way of approaching healthcare, and support for disabled people, but the longer I am sick and disabled, the more I realize the services we need are so under-resourced, that these kinds of decisions are not personal, and are made as a way of removing vast swathes of people from the potential of Assisted Living because demand is so high, and supply so woefully low.

Many people I meet are more worried about keeping their personal taxes low, instead of raising them slightly to cover more investment into housing and health support services for the disabled and chronically ill in their own communities, and who can blame them? They probably don’t realize that what happened to me could happen to them at any moment. I surely never thought that at 51 I would be so consistently unwell, and disabled, that I’m unable to fully manage and take care of myself in a 240 sq ft cabin!

I’m know I’m fortunate to have my little home, even if I can’t manage living the lifestyle that goes with it anymore. At least I have this sanctuary, and in absolute paradise too. Just wish I was able to make it work, and wasn’t so limited in what I can do and where I can go. The post office and home, is a big trek for me these days, and a day in town for medical appointments usually takes me a week to recover.

I DO worry about the future though, and not the far away future, but the future of tomorrow or the day after, or the next time I have an episode, and I’m unable to speak or control my bodily movements. Will I fall and really hurt myself next time? Will I fall outside, and be unable to get up or reach my phone or will I fall and burn myself on the wood-stove? Let’s hope not, eh! And not to worry because according to VIHA, I’m too unwell and my health is too unstable for me to move into an Assisted Living place, with the supports I need, but I’m perfectly fine living on my own in a Tiny House on a Tiny Island with only minimal support.