I arrived at the care home. No wheelchair waiting as promised. I told Kinny, my carer for the last five months, I just wanted to get in, no fuss. So, I held on to her & walked into reception. The manager was waiting with her fake smile I’d sensed in the online consultation. Something about her that’s false & insincere. I’d met similar people before. I’d already told Kinny the website description of the care home was too good to be true. We had the same debate as always; I said I was being realistic, and Kinny argued I was being pessimistic; the eternal optimist!
We got to my room & encountered what I had envisaged, not one from Kinny’s rose-tinted glasses. It was only around a year and a half since I got infected with SARS-CoV-2 and I was used to being let down and abandoned by everyone already. I got straight into bed, the 30-minute drive, lying under a duvet in the back seat had taken it out of me. As always, I’d taken extra sedatives to relieve the anxiety that leaving my bedroom, travelling & daylight would bring on, risking a crash. I wanted to be well enough to deal with the stress of being incapacitated, in bed in a new environment among strangers.
Kinny told me later that day that she cried all the way home, having to leave me in a place like the care home I was in. My realism had trumped her optimism yet again. We laughed. I was so exhausted when I got there that I hadn’t noticed the smell or the atmosphere. I was just glad to be lying in bed again, even if it was a small, single hospital-like bed without the dark curtains that were promised to keep out most of the daylight.
Only later in the day did I begin to feel the defects of the institution I’d found myself in. The first impression was the fact that not one member of staff who came into my room asked me how I was, nor if there was anything I wanted/needed. They knock & come in, no pause, they’re in before you know it. They knock hard & speak loudly. I have developed enhanced sensitivity to light & sound since contracting COVID around 18 months ago. Prolonged light or noise for more than ten minutes will cause enough physical distress to merit a blackout sleep mask & ear defenders for the rest of the day. Whereas with moderate ME, walking up to my local shop may have caused a crash two years ago, getting up & brushing my teeth can cause one now.
There was one senior member of staff who kept putting the light on after being asked not to. He was setting up an air mattress which helps prevent bedsores. I spend nearly 24 hours in bed post-Covid, pre-Covid with moderate ME was pretty much the same as a normal person except for an extra two to three or so hours in the afternoon. This is because I now have long Covid, which is much more sinister and disabling. When Kinny asked him yet again to keep the main light turned off & use a small lamp, he ignored her & carried on. I could sense he was trouble.
With Kinny gone I had a good cry & tried to relax into my new environment. I was grateful I hadn’t ‘crashed’, the biggest fear for some people suffering long Covid. To crash for me post-Covid infection results in 24-72hrs of darkness, no reading, no laptop & no moving except to go to the loo. All the time battling the extreme negativity, self-pity & the distraught of being completely immobilised in a body that doesn’t work. Sleep would be good but unfortunately, another major issue with long Covid is insomnia & unrefreshing sleep.
Later, in the evening I got up. I always try to walk a few steps each day to leave the bedroom & see something different unless I’m in a crash. I decided to get the lift downstairs & sit outside for five minutes. This is usually possible a few times a week, evenings only due to light & knowing that sleep will not be far away to get over it. I did so & as the fatigue & dizziness started, I knew it was time to make my way back upstairs. I knew it was frustration, yet again, that had got me up. My body didn’t want to. It had already been a day outside of my ‘energy envelope’. This term describes how to stay within our limits & not overdo exertion of any kind. I fail often due to frustration & anger at being disabled.
As I walked towards the lift the senior carer from earlier started shouting at me, asking me what I was doing walking around under the lights downstairs. I mumbled I had just about enough energy to make it upstairs. This was an issue at Kinny’s home. Her family would often catch me on my feet & start making conversation, not knowing that I didn’t have the energy to do both. It was either make it outside for five minutes to get some fresh air or have a conversation for five. We got used to this & the family knew they could only converse if I was in bed, not up on my feet.
Anyway, back to my first evening in the care home. I carried on walking & he was still having a go at me. I carried on determined to get to bed. He then stopped me by standing in my way & blocking me with his arm on my shoulder, still raising his voice. I understand a non-disabled person reading this may think “So what?”. However, when you are too exhausted to stand up for yourself either verbally or physically, it’s a harrowing experience, especially on your first day. I was at the mercy of a bully with no defence. If he’d known me before I got ill, his behaviour would have been very different. This powerlessness to protect myself from abusive, minimising health workers breaks my soul and feeds my PTSD.
I made it back to bed, took some deep breaths, and cried yet again, but couldn’t settle. I looked at my oximeter. It was showing 150 bpm. My oximeter has been ever-present by my bed since contracting Covid. Just getting up to the loo will raise it to around 120 bpm. When I crash & stay in bed for long periods, my body protects itself & can potter at around 50 bpm until I start moving again. The trick is to keep it somewhere in between which is virtually impossible with the ongoing ‘boom & bust’ of the illness.
I felt the need to document the incident, as I say, I had a feeling this guy was trouble. I emailed my social worker & then tried to get some sleep. Unfortunately, this is when the smell Kinny was talking about earlier hit me hard. Where was this sudden stench of urine coming from? I hadn’t noticed it before. Now it was making my eyes water. I smelt my hands & my legs & they stunk. WTF? I turned over & smelt the sheet & mattress. There was the answer they were rancid with stale urine.
I eventually spent my first night in the care home lying on the floor of my room wondering how I could get my sick body to rugby tackle, floor & bite the ears off the carer if he came in the night as standing would have been futile, my legs are now mere sticks!
The anger & fear subsided & I relaxed into a fitful sleep. I’d see what the morning would bring. Would I need to drink alcohol & get out of there, or could I hold on, be courageous and hope there were nicer staff around and things could get better? I decided to stay put. I had nowhere to run.
You see alcohol does what sedatives do & more, especially if taken together. If I drink enough, I’ll still feel ill, but my body can move. It will mask the symptoms enough to get me mobile. It will enable me to speak for more than five minutes, and it allows me to get out of a dark, isolated room I’ve been in for months & socialize. It’s very enticing. Unfortunately, it usually takes at least half a bottle of spirits & I can’t stop because I’m an alcoholic, so it’s not a great solution. I also know I’ll feel incredibly ill for a few days afterwards.
A few points on the sedatives & alcohol. I’ve been prescribed Valium & Zopiclone for around fifteen years. These are drugs you should only be prescribed for short periods. I didn’t know the long-term problems they’d create when I started taking them. I was just relieved that they took away my c-PTSD symptoms for the first few years. Attempts at coming off them before have led to mental breakdowns & hospitalization. The symptoms are very similar to my long Covid symptoms so it’s a double whammy that brings me to my knees.
I moved into my carer’s family home in Buckfastleigh because my moderate ME/CFS turned into severe long Covid & I was too ill to look after myself. In hindsight I was starting to go downhill a couple of years before Covid, I was struggling with my mental health after a toxic relationship. However, post-Covid is 100% worse, both physically & mentally. I had to give up a flat for life to save myself short-term. I wish I hadn’t. On reflection, I would rather have died alone in my own home than endure the abandonment, neglect and abuse I faced everywhere I landed since.
As soon as I got there the GP surgery, aggressively & against all NICE guidelines, reduced my Valium at an alarming rate & my health deteriorated even further than I thought imaginable. It essentially made me too unwell for Kinny to safely care for me alone. She had no respite as I couldn’t cope when she was away & in the end, even when she was home. That is why I am now typing away in a care home.
Day two of the care home started badly. My social worker was coming to hold the carer to account for bullying. She said it’s not just about me, it’s about stopping it from happening to other people. I begged her not to say anything for the weekend at least. They could turn on me, make my life here even more difficult & I’d end up on the streets. I’ve paused her for now. The carer came to my room & gave a grovelling apology before she arrived which was helpful. He was just trying to save his arse as he knew she was coming. In the end, I did get him on the floor though, only of his own volition; he got on his knees to apologise. Wanker.
Kinny came to visit in the afternoon with some edible food for me. Since Covid I have had gut issues on top of everything else & can’t eat many foods, mostly healthy ones, I used to enjoy. No legumes, no broccoli, onions, garlic…the list is endless. I just told them I was gluten & dairy free, as I have been for a few years now, to make it easier for them. They offered me cereal & toast an hour later! She was pleased the room didn’t stink of urine so much & her husband oiled my squeaky bedroom door. As always, he stayed for a while & left Kinny & me alone for a one-to-one chat. They’re a great team, two wonderful people.
Unfortunately, as always, it was great to see them, but I crashed shortly after they left. We’d spoken for too long again. I often make the same mistake. However, it’s an impossible balancing act. While it’s good for my mental health, it crushes me physically. So, back to crying. I cry a lot; it releases calming endorphins and settles me down for periods.
The rest of the day was uneventful. I couldn’t move from my bed & no one came to check in on me, which I was grateful for as I needed to recover.
I’ve been downstairs three times since I’ve been here to go outside for a few minutes. They have a lift which is handy as still no wheelchair available. The lounge stinks of urine more than my bedroom & I can see Tor Bay when I get to open my bedroom curtains on cloudier days, so being in my room mostly is preferable. I’ve survived another day.
This morning & I woke up at 12.30am. I only got off to sleep around 11pm. I’m exhausted but wide awake, so typing again, I guess it’s the constant checks from the night staff who appear to think that bursting into your room is a good idea every couple of hours. Are they playing a cruel game? Who knows in this place. Disturbed sleep is not uncommon as my insomnia has worsened considerably since Covid, probably averaging around four hours of sleep a day over the last 18 months. I haven’t had refreshing sleep for over a decade, even with ME/CFS. However, with Covid it’s more severe just like everything else. Indeed, nothing has gotten better since Covid, just much worse.
I managed to get back off to sleep at around 4.30am & woke again by the constant foot traffic outside my room at 7am. As usual, I feel like I’ve been run over by a bus, totally exhausted & even more ill than when I went off to sleep last night. It’s going to be another long day coping with an array of symptoms that are similar to when people have a bad dose of flu with a bit of vertigo mixed in for fun. However, there is no getting well in a few days for people like me with this disease. It’s constant, debilitating, isolating & misunderstood by most people.
This is clearly not the right environment for me to get any better. I need to be eating healthy, wholesome food in order to at least maintain my low health baseline. I need to get adequate sleep to stop crashing & becoming more unwell as a result of sleep deprivation. I also require as little environmental stress as I can to stop the rot. None of these requirements are met here. The food is unhealthy, they have not installed the darker curtains they promised on admission, and people are stomping around with raised voices outside my room all day. As usual, my needs are not met as my illness is misunderstood and even maligned.
I’m not sure how long I’ll be able to hang on in here. I’ll take it a day at a time, sometimes an hour at a time. It appears I’m stuck as the front door needs a password I don’t know & I’d have to take a lot of medication to get into a taxi to get to alcohol & be free of many symptoms for a few hours, probably making me homeless. However, right now the fear & fury is on me. The way this illness has wrecked my life & the absolute ignorance of people who haven’t a clue about how much people suffer grates on me sometimes. The abuse I see people have been exposed to is disgusting. The suicide rate is high. People aren’t just chilling out watching Netflix, they’re curling up in fetal positions riding out vertigo & nausea for hours every day.
I’ve been here for 72 hours now. Not one member of staff has asked me how I am. A friend texted me the other day, saying, “At least you’re not homeless.” He’s right; however, I can’t help feeling like I am. Just a friendly voice in the morning asking how the night went or how I’m feeling would be cool. There’s none of this. It’s here’s your breakfast, and out they stomp.
Porridge again today, it’s healthy for most people. Not for me, it spikes my blood sugar. I’m used to eggs & proteins to keep my symptoms at bay. Not an option here. The tea is caffeinated still, and my body will only tolerate decaff, so sticking to water only until my Amazon order comes. I drink at least three litres of water every day, and my thirst is never quenched. I fear this will end in disaster. I will just get sicker as the days go by without my basic needs getting met. The alcohol is calling me to oblivion, to be free from physical & emotional pain, but I’ll hold off & give it one more go yet again today. I promised Kinny I’d see the weekend out. I should really be promising myself.
Update 2025: This blog was written in April 2023. A lot has happened since then, mostly bad stuff as my long Covid appears to be progressive. Kinny never kept her promise to always be there for me. I only saw her one more time when she dropped off the last of my belongings unannounced at the care home. I was too heartbroken to speak to her or her husband. The lack of care, verbal abuse and disdain for me and my condition got more intense from the care staff. I did eventually drink and tried to take my own life as I was powerless to change anything from my bed and nobody visited to see how I was or advocate for me.
I was hospitalized, which I’ll save for another blog as the abuse, neglect and bullying got worse, not better, in an NHS hospital for the next twelve weeks of my long Covid journey.
