Isolation and loneliness are issues affecting many people living with chronic illness. You may live in central London, surrounding by people and yet still feel completely alone and separate from the outside world. Anxiety, depression and other mental health conditions, along with physical limitations can make it incredibly challenging to leave home. However, social interaction and the opportunity to form meaningful relationships is something we all need.
Read on to find out why and how to nurture more of this in your life, no matter what physical and mental health issues you are facing.
Companionship
Even those of us who enjoy our own company and identify as introverts, experience a sense of loneliness from time to time. Ultimately, we all benefit from and appreciate the bonds of friendship, family and loved ones with whom we can connect, interact and share our lives.
Life with chronic illness can be isolating for a number of reasons. It is difficult, sometimes impossible to be spontaneous and free. As a consequence, one’s social life is often impacted. You end up missing out on events, occasions and turning down invitations even though you may not want to. Furthermore, it can be hard for other people, who have no knowledge or experience with chronic illness, to understand what you are going through and why you are unable to involve yourself as fully as you’d like to.
It is therefore useful to find a real-life group or an online forum that is focused on the specific condition(s) you live with. This will help provide support and information, enabling you to better manage your issues, whilst also connecting you with others in a similar position.
Support
Of course, it’s not just companionship that makes social connection vital to those suffering from chronic conditions. Many of us need other people in our lives to support us directly with day-to-day activities.
This takes many different forms – from employed support workers to help with personal tasks like washing, dressing and feeding, to family members who voluntarily play their part. Others in your life may take on a less direct, but still supportive role in helping out with childcare, for example. They might even assist financially, by offering to be a guarantor should you need a loan. Find out who can be a guarantor by clicking on the link. This option is worthy of consideration, especially if you are unable to work full-time because of your condition.
Finally, personal relationships and social connections are so important because they give us perspective. After all, it is often all too easy to fall into a negative thinking pattern when you have a chronic illness. But interacting with as many people as possible, both in real life and via social media, will offer comfort, companionship and the realisation that we are not alone in feeling low, frustrated and isolated.
In addition, pursuing social connections in this way can present us with the rewarding and mutually beneficial opportunity to reach out to help other people. Something that can help tip the balance from feeling like we are a passive sufferer, to someone who is making a valuable contribution to society.
Saidee Wynn discusses life with chronic illness and her candid new book
Saidee Wynn, aka the Spoonie Warrior
32 year-old Saidee Wynn is the author of a new book about life with disabilities and chronic illness. A product of the successful blog, Spoonie Warrior, the book is a candid first-hand account that will make you laugh, cry and shout, “me too!”
1. Saidee, could you please tell us about yourself and your experience with POTS, EDS and PTSD?
I currently live in Atlanta, Georgia with my husband and six year-old daughter. Before POTS(Postural orthostatic tachycardia syndrome) hit me hard, I was a middle and high school teacher. I taught history, literature, and drama. I now work part-time as a copywriter and do my own writing whenever I actually have the energy to do so.
When I first got sick with POTS, I couldn’t keep up with my regular work load. My boss was very accommodating and worked with me. I started working part-time on what we hoped was just a temporary basis. That was in the middle of the school year. Towards the end of the school year, I knew that I’d have to make a decision about whether or not I could continue to run the classroom as a lead teacher.
I wasn’t getting any better and my doctors said they weren’t sure I would, so I made the decision to step down as a lead teacher. I continued to work part-time for a little while, doing about 3 hours a day, but after a year of attempting to do that, it was still too much.
Since my health is so unpredictable, it was difficult to stick to any kind of set schedule or keep up with deadlines. I ended up missing the last six weeks of my final year of teaching because of an injury. That was just over a year ago, and I still miss it.
I’ve had EDS (Ehlers-Danlos syndromes) my entire life, I just never knew it. EDS causes a lot of chronic pain as well as frequent dislocations and subluxations. There are a lot of things that I used to think were normal that I now know aren’t normal. Most things have to do with how the body moves. With EDS, our collagen is faulty, and collagen makes up the tissue that holds your joints in place. Actually, collagen makes up a good portion of your body.
Anyway, I always knew I was more flexible than other people, but I didn’t always realize to what extent. Those with EDS have a habit of sitting in weird positions, especially keeping our legs up on a chair or tucked in. I didn’t realize this wasn’t a normal thing that everyone did until people started pointing out to me how weird it was that I did that. I started paying attention to others and noticed no one else did it. I also didn’t realize intense joint pain wasn’t normal. I was always told it was “growing pain” and just assumed everyone else was better at dealing with it than I was.
I still discover strange things that aren’t really ‘normal’ all the time. My husband and I have a game of sorts where I’ll do something and ask, “EDS or normal?”. It usually means moving my body in some way that I didn’t know others couldn’t do. Also, being able to zip up my own dresses or put sunblock on my own back. I thought people were just being lazy when they asked others to do that stuff for them. I didn’t realize it was because most people legitimately can’t reach.
I’ve also had PTSD (Post-traumatic stress disorder) since childhood, but never recognized the symptoms or the depth of my trauma until a few years ago. It affects how I react to the outside world and other people. My brain can perceive danger even when there isn’t any danger around.
POTS didn’t really hit me until about 2.5 years ago, but it changed my life completely. I used to be an incredibly active overachiever, and now I celebrate having the energy to take a shower! POTS is a type of dysautonomia, which is a dysfunction of the autonomic nervous system. Think about everything your body does without you thinking about it, like breathing, digesting food and circulating blood. That should give you a rough idea of what parts of my system are affected – basically all of them.
Obviously, all of these conditions have a pretty big impact on my life. I can no longer hold down a full time job. I can’t dance, act, or sing like I spent my whole life doing. I’ve had to create a totally new ‘normal’, which isn’t easy to do and definitely involves a grieving process. But, somehow, I’m making it work.
2. You are also a wife and mother to a young daughter. How does your disability impact on family life and how have you all adapted?
The biggest impact is that I can’t do everything I would like to do with my husband and daughter. I can’t go play outside, have dance parties, ride bikes, or even play in the park. I have heat intolerance and live in the south, so I’m pretty much restricted to the indoors most of the year.
When my husband and I were first dating, we used to take a lot of road trips together, even going camping on the beach, but now I can’t handle long car trips. We mostly just spend time watching Netflix and Hulu.
Matt, my husband, picks up a lot of the slack as far as doing the things I physically can’t do. He does all the driving, shopping trips, and play time duty. While I can’t do all the physical things I wish I could, I can still be there for my family, emotionally. We read together, watch movies, laugh, and play (gently, of course).
My daughter still sometimes struggles with the fact that I can’t do everything she wants me to, and will sometimes lament by saying, “I wish you weren’t sick”. Despite this, we still have a very strong relationship. It’s pretty normal for kids to wish something about their parents was different, right?
3. How do you explain your condition and limitations to your young daughter?
There’s no one way. Every day she gets older, bigger, and smarter, which changes how we can talk about my illnesses. She knows I have “chronic illness” (yes, she actually uses those words), and that it means I’m always at least a little sick. But some days I feel better than others.
She also knows that I get dizzy when I walk or stand too long, and can’t be around lots of bright lights and loud sounds. When we were getting ready to go to her kindergarten graduation she said, “Mommy, it might be loud, so you should probably bring your earmuffs”. It was sweet.
There are two great books on Amazon, written by Moms with chronic illness, that we sometimes read. This helps her understand a little better. They are Mommy Can’t Dance and Why Does Mommy Hurt?
4. When and why did you decide to blog about your life and experiences with chronic illness?
I’ve used writing as a form of self-expression and therapy my whole life. When POTS came along and I suddenly couldn’t do any of my other passions anymore, I really leaned into my writing.
One day, I got the idea to start a blog and before I knew it I had bought a domain name. I thought I’d be lucky to even get one reader, so I’ve been overwhelmed by the response to my writing.
My goal has been to keep writing as long as I enjoy it, and I’m still loving it. Although, I have had to take breaks due to health issues or because of things going on in my life, I haven’t given up on it yet.
Most popular blog posts: “Why You Should Stop Spreading Inspiration Porn,” “Disabled: Say the Word,” and “Dear Doctors, No It’s Not All In My Head.”
5. In what ways have you benefitted from blogging and how does your blog, Spoonie Warrior, helps others?
I get so much from blogging. It gives me a great outlet for my experiences and a sense of purpose. I’m able to connect with other people and feel like I’m making a difference in some small way. The greatest feedback I get from my writing is, “oh wow, you too? I thought it was just me!”
I like to tell it how it is, and give a real look at life with chronic illnesses, rather than the polished, sugar-coated version we often see. People seem to need to see that. It helps them feel less alone in their struggles, which is a big deal because life with chronic illnesses can be so isolating.
I think it’s important to remind people that everyone is affected differently by chronic illnesses. Just because I was unable to continue teaching, it doesn’t mean someone else with POTS won’t be able to, so don’t be discouraged. And just because I’ve been able to blog and publish a book, it doesn’t mean others should feel ashamed for not doing the same.
We all have different levels of ability and this can change with every passing moment. So, try not to compare yourself to others or get bogged down with what we think we should be doing. I don’t ever want to be the example someone’s doctor/parent/teacher uses to say, “well, she could do it, so why can’t you? You’re just not trying”.
Do what you can, when you can. Don’t put your health at risk in order for others to feel more comfortable with your abilities.
6. Can you tell us about your first book – a collection of short essays – entitled, ‘Tales of a Spoonie Warrior: Chronicles of the Chronically Ill’.
I wrote the book because there isn’t a lot of literature about life with chronic illness/disability, actually written by someone with a chronic illness and/or disability.
There are a lot of self-help books and novels turning the lives of disabled people into inspiration porn or tragedies, but not much about the everyday realities of our lives. That’s a book I would have loved to read when I was first diagnosed! And, they say you should write a book you would want to read, so I did.
It’s mostly aimed at other people with chronic illnesses and disability, however, there’s also some stuff in there for healthy people who just want to know more about our lives and struggles.
The tone is very conversational. Some of it is funny and sarcastic, some of it is gut-wrenchingly sad, and there is also anger. All of it is very personal. It reads like you’re sitting down to coffee with an old friend. I think readers can expect to find themselves within the pages of my book and walk away from it knowing that they are not alone.
Working full time is the goal for most of us – to earn our own money, pay the bills, put our skills and knowledge to good use, in addition to contributing to society. But for those who deal with chronic pain each and every day, this is not so easy to achieve.
Living with chronic pain can be debilitating, difficult to manage, incredibly stressful and for some it is sadly all-consuming. It is hard to focus on anything other than how you feel, thereby potentially affecting your personal and professional life, as well as your mental health and wellbeing.
No one wants to be out of work due to ill health. Aside from the obvious financial gain; work provides a purpose, opportunities to socialise, integrate with peers and further your own personal development.
Whether you commute or work from home, it’s important to find the method of pain management that suits you. Chronic pain can manifest in many ways, and as such there are several forms of treatment including medication, heat pads and even CBD oil.
Begin your day with strength and positivity: Try listening to motivational podcasts before bed or first thing in the morning. This will aid your mental health and encourage determination and perseverance to help you make it through the day.
Set the alarm: Seems obvious, right? But in all seriousness, this is an important step. An alarm will provide that extra nudge to get you out of bed. Position the alarm out of reach so that you’re unable to hit the snooze button or knock it over in frustration.
The earlier you start the day, the more time you have to prepare yourself physically and mentally. Rushing around will only add extra stress and inevitably exacerbate your chronic condition.
Learn to stretch: You might stretching is a bad idea for anyone living with chronic pain. However, in consultation with doctors and specialists, it can be of great benefit to devise a plan to stretch and exercise each day.
Stay as mobile and active as possible, but be sure to reserve energy and rest when necessary. Don’t force yourself to work through unbearable pain. This is counter-productive.
Comfort: Pay attention to your working environment – introduce furnishings and features for optimum comfort. Think about seating, cushions, footrests/stools and massagers.
Consider consulting an occupational therapist who will help to make your working life as easy as possible. If that means adding eight cushions of varying
firmness to your office chair, then do it!
Planning and preparation will result in good performance at work, despite constant chronic pain. Of course, it is sadly the case that many sufferers will never be completely rid of pain. But in order to work, and to work to the best of your ability, you need to formulate an individually tailored method of management. There is no ‘one fits all’ solution.
It’s fair to say that most of us dream of buying our own home, right? That first step on the property ladder is an exciting milestone in our lives. It is representative of independence, responsibility and yes, becoming a ‘real’ adult!
However, for many it can be a lengthy and stressful process. Finding a suitable property in the right location, and at an affordable price is not easy, particularly for today’s generation.
For those of us with a disability, the task is far greater. To some, being able to live independently in your own home, whether renting or buying, feels like an unreachable goal. If and when you’re able to find a property to suit your requirements, you then face the inevitable task of adapting it to ensure it’s fully accessible.
While this can be daunting and even off-putting, if you choose to take a positive perspective, it could be considered a fun, and thoroughly rewarding project. Remember, you don’t necessarily need to wait for an accessible property to become available. Alternatively, why not find the home you love and adapt it so that it’s perfect for you.
1. Taking Your Time
Perhaps most importantly, don’t rush the process (tempting though this may be). Of course, we’re all impatient to leave the family nest and move into our own place. This is major undertaking (particularly for disabled people) and a great expense, therefore it needs to be done right. It may take months, it may take years! Believe me, I know how disheartening the waiting game can be. But is really is essential to take your time.
2. Consulting A Contractor
Once you have found a suitable property, where applicable, the next step is to consult contractors (ie. builders). If structural work is necessary, seek advice and obtain quotes from at least three builders. I would also advise checking out a range of accessible homes. This will provide information and inspiration, thereby enabling you to plan your new home effectively.
3. Estimating The Budget
Obviously, there is no point obtaining quotes and making calculations if you are unaware of your overall personal budget. It is imperative, from the start, that you establish an estimated budget, and that you stick to it. You could fund the adaptations using savings, your original house buying budget, or you may choose to investigate the option of long term loans. Either way, ensure you have a genuine estimated budget.
4. Making It Your Own
When modifications are required to make a home accessible, it will affect the physicality and aesthetic of the property. For example; ramps, wider doors, level access, hand rails, lifts, lowered units and ceiling track hoists – these are all very visible features. You may feel like you are having to forego style and character in favour of practicality – and it’s okay to feel that way. But regardless of the extent of the adaptations, you can always make your mark. With a little planning and creativity, you really can make an accessible property your own. Have fun with furnishing and decorating your new home.
5. Making Room For Your Things
Whilst working with professionals (occupational therapists, builders etc) who will help to adapt the property to your specific needs, you’ll also want to make sure there is room for your personal items and equipment. Make a list of everything you will need to store – from wheelchairs to hoists.
At the end of the day, thorough planning is key! Prepare, plan and be patient…
While some progress is being made to accommodate disabled employees, there is still much more that could be done to help us to feel comfortable, confident and able to perform most effectively, at work.
This post highlights three crucial changes that need to take place to promote inclusivity within the workplace.
1. Better help for those with hidden disabilities:
It is evident that wheelchair-users, like myself, need physical modifications such as accessible desks, ramps at entrances and exits, and lifts. But, due to a lack of information and awareness, those with hidden disabilities are still being denied access to the minor adaptations required to enable their working day.
For example, some people with debilitating anxiety conditions can find it incredibly difficult to work in an open-plan environment. Providing a private space or even desk screening can resolve this issue, thereby enabling optimum productivity. However, some businesses would rather maintain their open plan aesthetic than implement these simple adaptations in order to assist disabled employees.
2. Inclusive bonding activity and rewards:
There is currently a lot of focus on workforce team bonding activities, since this has been found to be a successful method of encouraging inclusion. However, many of these activities are physically demanding ie. assault courses and river rafting – totally unsuitable for wheelchair-users and those with physical disabilities.
Of course, there are many more inclusive bonding activities, accessible to everyone regardless of ability. For instance, hosting a Weekly Quiz would unite team members whilst also providing a stimulating, competetive challenge. Then there are shared, adrenaline-fuelled experiences like skydiving, indoor skydiving and sailing. All of these sports cater for people with a diverse range of disabilities.
Believe it or not, bonding activities can be tailored to the needs of the individual, and made more inclusive through various adaptations.
So-called ‘escape rooms’ are increasing in popularity. Players are locked in and must work together as a team, solving puzzles and riddles in order to escape before their allotted time is up! These ‘escape rooms’ are fun, exciting and can be easily adapted for those with disabilities.
If you are feeling particularly creative, you can following the guidance here and devise your own unique, inclusive bonding experience. This way, you can ensure it will be perfect for all involved.
3. The opportunity to prove ourselves, just like everyone else:
Though it should really go without saying; as disabled people, we want the opportunity to prove ourselves, just like everyone else.
We don’t want token gestures from employers. Disabled people are skilled, talented, capable and willing to work hard. We can offer a unique perspective and want to prove our value as employees. We want to be there because we have a genuine contribution to make, and we want to be taken seriously in what we say and do professionally.
The important issue of workplace inclusion is something that requires immediate attention. Both employers and employees need clear access to information and education. Knowledge will promote confidence, which is essential for disabled people to access employment and for career progression.
Not all disabilities are visible. Right now, you could be sitting next to someone who is living with a form of significant impairment, and you would never know by appearances alone. Alternatively, you yourself may be one of many people with an invisible disability, trying to navigate the challenges of daily life.
Either way, it is both advisable and beneficial to gain an understanding of the coping mechanisms, and the ways in which people living with invisible disabilities overcome the obstacles of daily life.
Seeking help:
It is often the case that those with a hidden disability, disease or disorder do not seek the help and support they so desperately need.
If, for example, no one sees your need to repeatedly check the front door before leaving (OCD), or that you have to sleep for an entire day after a brief shopping trip (Chronic fatigue), or that you need a glass of vodka before leaving home (Alcoholism); a genuine disability can be easily dismissed as nothing important/serious. Thus you endure, often alone, and continue with life and the issues associated with invisible disabilities/disorders.
Though your condition is not visible, it will inevitably impact and affect your quality of life and, to an extent, the lives of those around you. Sadly, it isn’t something that will just go away on its own accord either. Therefore, it is vital to seek help and advice. Whether that is finding somewhere like the Ana Treatment Centres, visiting the doctor to be screened for a particular condition, or even contacting a charity to assist with acquiring an official diagnosis.
Telling friends and family:
Informing friends and family of your hidden disability/disorder/illness can be another major challenge to overcome. You may worry that you won’t be believed, or that your nearest and dearest think you are just being lazy or making it up. Furthermore, you may not wish to bother or burden them. Perhaps you feel too embarrassed or self-conscious to share and openly discuss such a vulnerable part of your identity with others.
Of course, the decision to let people in your life know about your condition needs to come from you. It is important to remember that it’s completely fine if you don’t want certain people to know. You will find though, as a general rule, those who truly care will take the time to find out more about your disability/disorder/illness, and support you in any way they can.
Boundaries and limits:
When it comes to invisible disabilities, the expectations of the outside world, and even your demands on yourself, can often be in direct contrast to what you are able to do. This isn’t to say you should self-impose limitations and restrictions.
There are many, many disabled people out there pushing boundaries and living exciting, adventurous and fulfilling lives!
Unfortunately, it is not uncommon for people to react with confusion or frustration when your hidden condition dictates that you cancel/change your plans at the last minute. In this situation, it is advisable to draw on all your self-confidence and establish personal boundaries rather than adapting to the demands of other people. Finally, try to avoid conforming to pressure and societal expectations.
*Update* As you may (or may not) know, I am in need of a new powered wheelchair since my ageing Quantum 600 is rapidly falling to pieces (slight problem!) and no longer meets my needs.
The very long process of acquiring a new wheelchair began several months ago. I previously wrote two blog posts outlining my situation, requirements and the plan of action:
I received a NHS voucher from wheelchair services at a value of £1700. I’ll be honest, I was amazed to receive this much from them as I was expecting no more than a few hundred quid (if that), based on previous experiences.
£1700 is a lot of money for which I am grateful, but it’s only a fraction towards the cost of the Sunrise YOU-Q Luca wheelchair I now need. Even with basic seating, I have been quoted in excess of £7,000.
I applied to the Joseph Patrick Trust for a grant to help out – this could be (here’s hoping!) as much as £2,500. They are holding a review panel on 1st August and I will be notified of their decision within the next ten days.
So this is currently the stage I’m at in this looooong, slooooow process. There’s nothing more I can do until the JPT have held their review in August. The waiting continues…
You never know, I might get my new chair in time for Christmas! (Don’t mention Christmas. Yes, I know, I know – sorry folks).
On the weekend of 12th May, my amazing brother and his two friends took on The National Three Peaks Challenge. This involves climbing the three highest peaks of Scotland, England and Wales, within 24 hours.
The total walking distance is 23 miles (37km) and the total ascent is 3064 metres 6o(10,052ft). The total driving distance is 462 miles.
As you may already know, I have lived my entire life with a rare form of MD – Ullrich congenital muscular dystrophy. Having witnessed his little sister grow up with the effects of this muscle-wasting condition, my brother decided he wanted to do something – something big! – to help make a difference to the lives of others living with MD. That something is the National Three Peaks Challenge.
Report from my brother:
Friday 11th May: We drove ourselves from Worcestershire and stopped overnight at a place called Fort William in Scotland.
Saturday 12th May: The challenge began at 16:40 as we started to climb Ben Nevis, in sunny but very warm weather (a little too warm). We peaked in 2 hours 10 mins, reaching the snowy summit at 18:50. Visibility was perfect and gave us spectacular panoramic views of the other mountains in the area.
Ben Nevis, accomplished!Ben Nevis! One peak down, two to go…
We then ran down to the car in a total of 3 hours 45 mins, before driving through the night to the hamlet of Wasdale Head in the Lake District, to start our climb up Scafell Pike.
04:19 – Peaked at Scafell Pike
Sunday 13th May: It was pitch black and rainy all the way up to the top (04:19), but the weather cleared on the way down and the Sun started to rise, making it easier to navigate. However, our descent took longer than we hoped due to extremely slippy rocks underfoot, combined with a lack of sleep.
View over Wast Water at first light during descent down Scafell Pike
Finally, we drove on to Pen-y-Pass in Snowdonia to begin our climb up Snowdon. The weather was perfect – sunny with very clear visibility. We took the Miners Track up to the summit (12:30) and then the Pyg Track back down.
The hardest part for me was the first 30 mins of our trek up Ben Nevis. It gets incredibly steep straight away and in the extreme heat I soon got jelly legs. But as we got closer to the summit, it cooled down and I was able to splash my face with cold water from the stream coming down the mountain.
Collectively, we all found the biggest challenge was to keep going despite the lack of sleep. It was hard to maintain enough energy and endurance to stay focused and not trip over!
Challenge completed at: 14:43 in 22 hours 3 mins
I would like to say a personal thank you to the best big brother anyone could ever wish for! We don’t do gushy at all, so he’s probably reading this wondering why I’m being so nice. Rob – you know how I feel. Loves you more x
The bro x
To Adam & Dan – thank you both for being such good friends and for selflessly offering your time and efforts. It means more than you realise.
To anyone reading this, please share the link and if possible, make a donation to support the great work of Muscular Dystrophy UK:
Thursday 8th March marked International Women’s Day 2018. For me, it was spent in hospital (Russells Hall, Dudley) undergoing minor surgery. Could be worse, I suppose!
Due to the fact I have Ullrich congenital muscular dystrophy (a muscle-wasting condition), people are often horrified when I tell them how many general anaesthetics I’ve endured throughout my life (at least 10 – honestly, I’ve lost count!).
Although it is obviously best avoided, I’ve personally never encountered any problems or complications as a result of general anaesthesia.
I’m a big believer in knowing your own body and what you, as an individual, are able to withstand. When undergoing any form of surgery, communication is key – particularly when you have a disability.
A Few Tips:
Go prepared: Take all relevant documentation to your pre-operative assessment(s), including names and contacts for all the medical professionals you see regularly.
Meet with your surgeon(s) and anaesthetist: It is not always common practice to see your anaesthetist prior to surgery, but in my case it is essential. Explain your specific requirements and concerns, and don’t be afraid to ask questions.
Ensure everything is in place prior to your admission date: If, for example, you use a Bi-pap or C-pap machine (non-invasive ventilation), tell your medical team – nurses included. Make sure they know your settings and have your NIV machine ready for you to use post-operative.
I usually discharge myself on the day of surgery or, as soon as I know I’m well enough to manage at home (again, I hear you gasp). Anyone with a disability who has spent time as an inpatient will appreciate why I prefer to escape as soon as physically possible.
Don’t get me wrong – I cannot fault the care and conscientiousness of the doctors and nurses. I am a big supporter of the NHS and frankly, I would not be here today without it.
However, the sad fact is, hospitals in the UK are not equipped for those of us with disabilities and complex care needs. Trust me – having been admitted many times, to various hospitals, for various reasons – I am well versed!
On this particular occasion, it was necessary for me to stay in hospital overnight. My Mom was with me all day but went home at around 7pm when it became apparent that I was unfit to leave. This essentially left me alone and stranded in bed (one that didn’t work!), unable to move, reach or sit myself up.
I couldn’t and wouldn’t expect Mom to stay with me all night, in order to assist with my physical care needs. She herself has recently had a full knee replacement and was exhausted.
After a long, uncomfortable night spent clock-watching, I was incredibly relieved when my folks returned at 11am on Friday to take me home. My home is set up for my care needs. Unfortunately, hospitals are not.
