Recovering from Covid 19: an up-hill battle

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Back Story

7 Months after coming out of hospital with Covid 19 (see previous blog), I was hoping to have been well over the throws of the virus and back to my normal self. It seems that covid had other ideas. Like many now seem to be discovering, whilst the symptoms of the active virus have long past, I now find myself battling with symptoms of crippling fatigue, body pain and brain fog to name just a few. I’m left with a physical and psychological feeling that I’m only a fraction of the way up the huge hill I’ve been climbing for the last 8 months.

Back in May, after I’d been off work for the best part of three months, I was feeling somewhat better. We agreed a phased return to work, not really knowing what to expect. But I was feeling better, I was able to go for little bike rides, cope with more activity generally and was desperate to get back to some normality. I started with a few hours a week and built it up from there. Before too long I was back to fairly normal hours and felt like I was coping. I had a holiday in August which broke things up a little and all seemed ok.

Relapse

However, by mid September things started to change. I was struggling more with fatigue and the headache which hasn’t left since having covid was beginning to get worse. By October the wheels were really beginning to come off and it was getting more difficult to hold onto the denial and the pretence that everything was OK. It wasn’t.

“Brain fog (I liken it more to someone opening up my head and using a whisk to mash it all up)”

The symptoms seemed to be getting worse, and as time went buy the rate of decline seemed to accelerate too. On the 12th October I was signed off again and remain off work today. My symptoms include: 

  • Joint and muscle pain
  • Fatigue and a constant feeling of being tipsy (I’m not on the booze I promise!)
  • Pain in the chest
  • Persistent headache
  • Feeling physically week & bucking knees
  • Unsteady on my feet
  • Brain fog (I liken it more to someone opening up my head and using a whisk to mash it all up)
  • Difficulty in processing multiple stimuli
  • Brain crashes, e.g. crashing mid-sentence and totally losing track of what I was speaking about

Besides the physical symptoms, perhaps equally as difficult to deal with has been the psychological impact.

Guilt

This has been really hard to navigate. The guilt I have felt for having had so much time off work has been huge. Rightly or wrongly, and like so many, I gain much of my sense of self from the work I do and the contribution I make. My work have been amazingly supportive but this hasn’t stopped the sense of letting the team down which has really gripped me. So far this year I have had about 17 weeks off due to this illness, which sits about as comfortably with me as an army of giant ants armed with itching powder in my pants.

Sense of failure

Again, for someone who likes to contribute and to achieve, being floored with fatigue has left me at times with a sense of uselessness. When the day’s achievement can be summed up as having successfully made a doctor’s appointment, or simply managed to get up and do one or two things in the day, the voice in my head telling me I’m a failure and a let down seems to have more of a platform than I’d like. There are days when I manage more; I’ve decorated the bathroom (over the course of weeks)…cue more guilt for being off work and doing DIY…arghhhh!

Anxiety

Usually I’m not particularly an anxious person. Following my hospitalisation with covid I seem to have found new ways to worry. Two ways in particular. 1. That I will get covid again. The evidence seems to point to this being possible and scares the life out of me. I find myself getting really grumpy and angry when people don’t keep social distancing rules in the supermarket etc. and find myself having really heated arguments with people in my head. 2. That I won’t get well enough to return to my usual capacity and that I won’t be able to provide for my family in the way I would like. The fear of losing my capacity to be a useful employee really upsets me, both for the obvious financial reasons as well as adding more to the sense of failure above! I find myself making plans in case returning to work doesn’t work out…

Withdrawn

I have found myself becoming particularly withdrawn from others. My WhatsApp has dozens of unread or unanswered messages as I struggle to cope with too much communication. Sorry if that means I haven’t replied to you; it’s not that I don’t care, I simply seem to have very reduced capacity to manage too many conversations. I have always enjoyed my own company, getting away on my bike into the hills has always been a refuge and space to regenerate, but I seem to be craving this more and more as the stimuli of everyday life often feels too overwhelming.

Low

I guess this is to be expected. The constant pain, fatigue and general uncertainty of what lies ahead has left me at times feeling really fed up. Thoughts like “What if it doesn’t get any better”? or “I’m becoming a burden to those around me” or “Work will get sick of this soon enough and ditch me” seem to dance around in my head like a clumsy Charleston often leaving me feeling more withdrawn, irritable and grumpy.

Summary

Thankfully, I’m aware of all the crazy thoughts that run through my head, and am surrounded by such wonderful support. I was lucky enough to have some therapy too on the NHS and able to work through many of these difficulties. That doesn’t stop the washing machine head from taking over at times, but does mean that I’m able to bring things into perspective when it does begin to happen.

I don’t know how things will pan out, but in my clearer moments have been able to frame things differently. If life has changed more permanently, I feel ready to accept this and have explored the different options to me and have even begun to consider this as potential opportunity rather than as mere loss.

My encouragement to you if you identify with any of the above would be to seek some psychological support. It doesn’t mean you are crazy or weak or any of the other things we often unhelpfully associate with someone seeking therapy. If you have been through covid and are struggling now, there is a lot to grasp and to process; often a good therapeutic relationship is a helpful place to begin to do this.

Me and Covid19: it’s definitely not a hoax!

My story put more succinctly! But if you have time…read on!

It’s amazing how much I have procrastinated writing this, and sorry, it’s a long one! I know it’s a helpful thing to do in order to process what’s happened; perhaps there is fear of what will happen if I truly allow myself to accept the seriousness of my illness. But here we go…….

I wasn’t going to get Covid. I remember the community hospital where I work as a CBT therapist putting signs out the front of the walk-in centre asking people with symptoms of covid to stay away and to call 111 instead. I remember thinking that this will likely blow over and that if I did get it I’d likely experience mild symptoms as I generally keep myself fit, I wouldn’t be one of those who really suffered with this.

Wrong.

I don’t know how or where I picked it up. I hadn’t been travelling. I hadn’t knowingly been in contact with anyone with symptoms. But on Wednesday 4th March I remember having a funny, not painful or disturbing, feeling in my chest. I decided to stay home that evening rather than to go out as planned. The next day my voice was a little croaky; I didn’t think anything of it…maybe just a standard cold.

By the Friday I’d lost my voice and decided to work at home and cancelled work with clients.

Then things began to change quickly.

On the Saturday the cough started, the kind of cough that was a response to not quite being able to catch my breath the way I’d normally take for granted. My chest was beginning to hurt. I called 111 just to be diligent, if this was covid I wanted to be sure, so I could make the right decisions. As soon as I mentioned chest pains they said an ambulance was on the way! The ambulance came, found I was not having a heart attack and advised me to continue with paracetamol for the symptoms. I stayed in the rest of the weekend hoping my symptoms would have eased off for work on Monday.

Wrong again.

Reluctantly I called my manager to say that I wasn’t feeling good and likely wouldn’t be in for a couple of days. But instead of the symptoms getting better they got progressively worse. By Tuesday 10th March I was beginning to really struggle to talk in full sentences. I called 111 again, but things change quickly; it was hard to get through. Eventually I spoke with a nurse who was unhappy with the difficulty in talking and she sent a second ambulance. They came but since at that point my oxygen levels seemed ok, they were happy to advise me again to continue with paracetamol.

At this stage, my nights had become very disturbed. I would have bizarre dreams and think they were real and then keep waking in the night confused and not knowing what to do. At one point, my boss very nearly got a text to say I’d be late for work as I’d accidently blown up someone’s house when my car shot a fireball at it while I was fixing it!! I put a note beside my bed saying “You’re OK, go to sleep”.

But it was hard to sleep. The cough became much worse at night as I struggled for breath. Most nights I’d struggle with poor sleep and then wake at 3 and be awake watching the clock and coughing until morning came. I was exhausted.

Rachel, my partner, was amazing. She came to visit and bought me supplies of food and paracetamol. But by Monday 16th as I was waiting for a call back from 111 she decided enough was enough. She called 999 as I struggled to breath properly. This time the ambulance said they wanted to take me in as my oxygen levels were low.

Feeling like I was making a fuss I followed them into the back of the ambulance and donned the oxygen mask which became all too familiar over the coming weeks. But I hadn’t said goodbye to Rachel; she followed us in her car and bought a bag of things for me, but I didn’t get to see her again until I was out of hospital (briefly) ten days later. That’s a thought that troubled me later as I was in hospital….what if the last time she saw me was as I was bundled into the back of an ambulance, struggling to breathe?

A&E was frightening. Staff were in full protective clothing; there was a sense of fear that was tangible. No one had ever experienced anything like this. If I even thought about coughing it seemed that everyone would duck for cover. The medical staff were working under such strain and uncertainty; it was really unsettling.

Later that evening they admitted me to the respiratory ward…I’d thought they’d patch me up and send me home.

The next ten days were a mix of amazing support, cracking jokes with the nurses and doctors, denial, fear and utter loneliness. After about three days I finally got the diagnosis of covid. We already knew I had pneumonia, but now it was confirmed. They promptly put me in my own room. I remember thinking will they remember I’m here? Visits from staff were far fewer, simple pleasures like the tea round sometimes overlooked. Apart from the daily video calls from Rachel and my beautiful daughters, and occasional blood samples and routine observations, the days were alone. In those moments my mind began to wonder, so many “what ifs….”. The worst of which what if the last time I see my girls is over a video call with a canula up my nose looking generally rough. I’d quickly push such thoughts to the back of my mind; store them for another time.

On 21st March I was stirred to record a video message for friends on Facebook, urging them to take the virus seriously and to heed the governments guidelines. It seems a couple of people shared this in some groups. To date it’s had nearly 28k views!!

The amazing and unexpected thing was the frankly overwhelming love and support that began to flow. Literally people all over the world were praying for me, people I don’t know and have never met. I was getting so many messages of support, prayer and love, it was amazing. I can’t begin to name them all, but there were a group of elderly ladies in the States who gather to knit and pray together….I have no idea how they got involved, but wow!! My own church where I’ve been for about 18 months and still getting to know people were amazing too with so many sending messages, it feels like from the distance of my hospital bed I began to become even more connected with my church family. There are not enough thanks for all those who showed such love.

That support became a real source of comfort in the dark nights. I still wasn’t sleeping and was desperate for rest. I remember one night, from my quarantine, hearing the alarm go off (quite a frequent occurrence which formed part of the sound track of my stay) and the crash trolley being deployed with its various beeps and warnings. In moments like that where I was gripped with fear and the reality of this illness, when I had despaired of hope, I would suddenly feel surrounded; surrounded by the prayers of the saints and by the love of a Heavenly Father. I didn’t have answers, but quietly I knew a hope that was beyond the current situation. It was at that point that I began to write some lyrics for a song loosely based on Psalms 23, 28 and 118, a sense of praising Him from my valley.

What seemed like all of a sudden, my oxygen levels improved. The doctor was satisfied, and I was sent home. I was so glad to get out and to be able to see Rachel. I had nearly two days at home, but the cough was returning. 36 hours later my oxygen levels had dropped to 86%. Rachel called the ambulance again. This time I remembered to say goodbye. Then with a full face mask they put on the sirens and rushed me back to hospital (a different one this time). I was rushed into the resuscitation unit and put onto 85% oxygen at 15 litres per minute…I had previously only been on 3 litres at a low percentage.

Once again I was admitted. Things were different this time. For days I couldn’t crack a joke or rely on my usual denial to keep me “safe”. I don’t know if it was a lack of motivation or energy or both, but doing anything normal was often more than I could cope with. I remember being desperate for water one night. There was a glass full right beside me, but I was unable to reach out for it. This was perhaps the most upsetting and frightening time. I honestly couldn’t have told you where this was going or if I’d ever be coming home. The intensive care unit were monitoring me and had discussed the possibility of going onto a ventilator. I was beaten. Loved ones would send messages I couldn’t muster the energy to read.

 

A couple of days in they moved me to another ward; they didn’t say why. My mind began to race. On this ward I lowered the average age considerably! The man opposite lay still on his bed, mouth open gasping. He didn’t look long for this world. Also opposite me, a fellow who insisted on using his pee bottle sitting in his chair with no curtains drawn, it seems, every time I would stir and open my eyes. An image that is now burned in my memory!

And then it happened. As I woke early one morning it began to dawn on me that the bed next to me had had the curtains drawn for a long time. The elderly gentleman had been quite agitated and confused for a couple of days. Now he was at peace. The reality of this disease really hit home. Had they put me on this ward because I was in a similar state? A silly thought really, but exhausted and unable to sleep, and with too much time, thoughts often became very dark.

People continued to pray.

A couple of days later I remember waking and seeing the sun begin to rise; I was able to remember all those praying and once again became aware of my loving Father, my amazing God. Everything was still so difficult, it’d take me half an hour from thinking about sitting up to actually move myself. But there was once more a sense of hope, again, no answers, but hope.

I was now on the right treatment; the doctor had diagnosed me with a hospital acquired bacterial pneumonia in addition to the original covid viral pneumonia. But I was beginning to respond to the drugs and my oxygen beginning to increase. I have never been so obsessed with numbers as I was then! Little increments feeling like I’d achieved something huge!

My blood results began to indicate a reduction in infection and my oxygen levels were now in the low to mid 90s, not the best, but enough for the lovely doctor to say I could go home after having spent a further 9 days in hospital.

This time I managed to stay out of hospital and have made genuine progress. I am slowly recovering. My oxygen is near normal, but I get puffed out quickly and am tired from little exercise.

I am now so grateful. Grateful for so many things. The NHS staff simply cannot receive enough thanks. It’s been brilliant to be able to go outside and applaud them. But there is nothing like remembering the sacrifice and heroism that the nurses and doctors displayed daily. Experiencing their care and dedication was truly an awesome thing.

For the countless people praying, sending messages of love and care, I am so humbled and blessed.

For my daughters who would video call every day and play silly faces on Facebook messenger, you kept my heart beating and I can’t wait to see you again soon.

And to Rachel who has been my rock. Organising updates, keeping people informed, sometimes asking people to give me space, arranging various parcels for people to deliver with my favourite things (Milky bar buttons!!). Always there to speak with and to be real with, thank you for such love, despite your own difficulties with the whole situation.

Of course, the highest thanks and praise is to my wonderful Father in Heaven, without whom none of the above would have been possible. It’s his love in us that enables us to love like we do. I am so grateful that He has restored my body. I am so aware that this hasn’t been the case for so many.

However, the hope I experienced in those dark days was not in this world or life. It was in his eternal love and salvation; a salvation I know in Jesus. In those times I knew that whatever my body had in store, I was certain in the hope of eternal life with Him, a glorious hope and future, whatever this current situation might have told me.

 

Day 40… Lights in the darkness

light-in-the-dark

Well I can’t quite believe it’s Easter Day and that this challenge is at it’s end.

Firstly, a massive thank you to everyone who has contributed to this blog by sharing your story around mental health or wellbeing. You have been both courageous and generous with what you have shared  and a real blessing to those who have read your story. I’d also like to thank all those who have followed the blog in any way; it’s been really nice to hear that you have been encouraged in some way by what you have read here. This blog will of course remain open and I will always aim to publish your story if you feel you are ready to share it. I’d also like to say at this point that it is now safe to subscribe (below) to this blog without fear of a daily bombardment of email from me!! Continue reading

BBC: Pupils as young as four having panic attacks, say teachers

Original BBC article here


Children as young as four are suffering from mental health problems such as panic attacks, anxiety and depression, teachers say.

Almost all of the 2,000 who responded to an NASUWT survey said they had come into contact with mentally ill pupils.

Members of the teaching union suggest schools are struggling to access enough support to deal with the issue.

The Department for Education said it was investing £1.4bn to ensure all children get the help they need.

The union is highlighting the problem at its annual conference in Manchester this weekend and it will also discuss school funding and the online world.

The survey found:

98% of teachers said they had come into contact with pupils who were experiencing mental health issues.

They were most likely to be teenagers, with more than half of teachers saying they had seen issues in 14 to 16-year-olds.

But nearly a fifth (18%) of those surveyed by the union said they had been in contact with four to seven-year-olds showing mental health issues while more than a third (35%) had seen problems in youngsters aged seven to 11.

Nine in 10 said they had experienced a pupil of any age suffering from anxiety and panic attacks, while 79% were aware of a pupil suffering from depression and 64% knew of a youngster who was self-harming.

Around half (49%) were aware of children with eating disorders, and a similar proportion (47%) knew about a youngster with obsessive compulsive disorder.

Pressure of exams and testing, family problems such as ill health or a break-up and social media were all seen as having an impact on mental health.

And when asked about how it affected pupil behaviour, most teachers agreed that it led to an inability to concentrate in class and led to a pupil being isolated from other students or have problems making friends.

‘Expert gap’

Chris Keates, NASUWT general secretary warned there was concern among teachers about a gap in the availability of experts and counselling to help children with mental health needs.

“It is clear that teachers and school leaders are seeing many more children and young people who are exhibiting the signs of serious mental distress.

“Teachers and school leaders take very seriously their duty of care to their students and it is clear there is a great deal of concern in the profession about the gulf in the availability of expert physiological support and counselling for pupils with mental health needs.”

A Department for Education spokesperson said no child should suffer from mental health issues and that it was investing a record £1.4bn to ensure all children get the help and support they need.

“We are strengthening the links between schools and NHS mental health staff and later this year will publish proposals for further improving services and preventative work.

“Schools can teach about mental health in a number of ways and we have funded the PSHE Association to provide guidance for teachers on how to do this.

“We have already announced plans for every secondary school in the country to be offered mental health first aid training. We trust teachers to deliver assessment in a sensible manner that will not create stress among children.”

‘Asking for money’

The NUT is also meeting in Cardiff for its annual conference this weekend.

Speaking beforehand, the union’s general secretary Kevin Courtney said: “Funding is going to be a theme that dominates the conference.

“In schools around the country, class sizes are going up. We are seeing arts, dance drama and music being cut. Vocational education is being cut.

“We are seeing schools around the country sending letters to parents asking for money on a regular basis to make up for the the gap that the government is leaving in school budgets.”

The Department for Education insists that schools in England are funded at record levels and that its investment will rise as pupil numbers rise.

Cross Oceans

cross oceans

Day 39 of my 40 Day Blog Challenge, I really can’t believe there is only one day left! As I said before, I’ll post day 40 on Easter Day, however, if you have a story, in-between now and then, I will post it.

I often see sayings like the one crossed out above on sites like Facebook and Linked-in, and it always makes me a bit sad. I came across this version a few weeks ago (I think maybe a quote from Jay John, but it’s off the internet so not totally sure!)  and thought it was brilliant and wondered if it may have an application for this blog… Continue reading

The thing about labels…

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Day 38 of my 40 Day Blog Challenge. It’s strange to think that this challenge is coming to an end! Whilst I won’t be posting a blog every day in a few days time, doing this challenge has highlighted the fact that people are ready to speak about their battles. Because of that, if you have something you feel you’d like to share, then please do just get in touch – there will always be a space for your story here. Today, I share about my views on labels… Continue reading

The Blog

blog

Day 37 of my 40 day blog challenge. I’ve had a plumbing disaster tonight, a 15 minute replacement of one bar shower for another turned into a 3 hour unsatisfactory DIY job. And the old shower is still in situ! If you know a good plumber…

So just a quickie today…I’m considering an event aimed at talking about and raising issues around mental health and wellbeing. If you’d be interested, and live in the Mid Sussex area, then please let me know, just comment on Facebook or below..

Mindfulness: hot air and deep breathing?

times go by concept digital illustration orange on black

 

Day 36 of my 40 Day Blog Challenge. Someone asked me what I thought about mindfulness, in fact they asked if it was just hot air and deep breathing?! It’s true that over the last 20 years, but particularly the last 10 years, mindfulness has become increasingly popular and seems to have found an application in almost every corner of life. Do a quick Google search and you can quickly become overwhelmed by the results! But we can hear of mindfulness so much and perhaps not really understand what it really is in essence, so I shall attempt to explain… Oh, and here’s a free download Falling Leaf Mindfulness Exercise Continue reading

Taboo

taboo

Day 35 of my 40 Day Blog Challenge. So I am wondering about getting to day 39 and then taking a break until Easter Sunday. In the meantime I shall continue to collect new contributions (please keep them coming in!) and focus on getting more exposure to the contributions that have already been written. I shall also spend some time thinking about and planning what happens next, since this blog has attracted far more interest than I imagined it would. Watch this space!

Today, I’m going to reblog something simple I wrote a couple of years ago about the Taboo surrounding mental wellbeing… Continue reading

Sarah’s Postnatal Depression

postnatal-online

Day 34 of my 40 Day Blog Challenge. Still more space for contributions, please please do get in touch. Remember to “share” or “re-post” if you have been moved or encouraged by anything you read here. We need lots more hits on the blog to reach 5000 before Easter!

We know that postnatal depression is more common than we may be aware, but it can still really take us by surprise and leave us feeling isolated and inadequate. Today Sarah really kindly shares her story with us… Continue reading