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My long Covid journey

My long covid journey

I have been housebound since catching covid in March 2020. Please be careful out there people even if you are double jabbed and boosted, you can still catch covid and while you might be unlikely to need hospital treatment at the time you could be left with long covid. I never had a stay in hospital and have struggled to get the help I need from the NHS in the last 18 months. The long covid clinics you see on the TV are a postcode lottery.

You don’t want what I’ve been left with, even when the pandemic is over I may still be housebound and effectively in isolation. You think 10 days isolation is tough try 18 months. Before a recent trip to my parents I’d gone 8 months without being in the company of others for more than a couple of hours. I can only cope with really short face to face meetings or phone calls because I get so fatigued and have so much brain fog.

I  now pay for a home help to pop to the shop, do some housework or washing up. I’ve recently come out of a two month long relapse. I moved to my parents – while other family returning from living abroad needed to quarantine in my home. It pushed me beyond my physical and mental limits causing a kind of physical distress I have never had before – not even last winter when a trip to get an x ray triggered a 3 month relapse. I’ve also relapses for a month after each vaccine.

I’ve learnt from the winter relapse and organised hospital transport so I could be stretchered in for recent checks on my heart. I’ve probably got POTS.  POTS is Postural Orthostatic Tachycardia Syndrome, a condition that impacts the part of the brain that is responsible for the control of bodily functions such as breathing, heartbeat and digestive process.  I tried with varying success the lifestyle stuff to help with this for a year although yet to get advice from an NHS professional about POTS.

The Clinical Commissioning Group (CCG) that are responsible for commissioning new services set up a long covid service in September and in March I had a hurried 10 minute call with a Respiratory Consultant who referred me back to my GP – they didn’t understand my examples of breathlessness nor know I was having respiratory physio to help chronic hyperventilation syndrome.

I’m lucky my GP surgery has been supportive of long covid. Thus a year after I’d become ill my GP had to start again with referrals and I waited 3 months for another hurried 10 minute phone call  – this time a cardiologist who seemed shocked I had gone so long (15 months) without having my heart checked – I will likely need a tilt table test to diagnose POTS which sadly thousands of people with long covid now have. Cardiologist said my bloods were good and I laughed because they had been done a year ago! Two months after an echo and ECG the Cardiology department has been so short staffed the cardiologist has yet to look at the result.

NHS Respiratory Physio was great, the exercises have helped although I’ve often been too fatigued to do them. Slowly week by week I have been breathing more through my nose and less through my mouth. And more into my belly rather than my upper chest. But only in the last few weeks have I seen an improvement in how long I can hold my breath. 10 private osteopath appointments have helped release my chest bit by tiny bit and I no longer get severe chest pain that I had for the first year. This second year of long covid I have developed frequent headaches that require me to rest – don’t think I’ve even mentioned them to a doctor. The first few months GP calls were pretty frequent but this year they have been every time a new fit note is needed – so two monthly – this has recently become three monthly.

Through long covid Facebook groups I found an amazing long covid yoga/PT group with twice weekly live classes to build back up my body strength and help me restore my autonomic nervous system. I could tell when I was coming out of my recent relapse because I was able to do both live yoga classes a week and there was no washing up for my home help. I chart my progress by noticing improvements in my bodies ability in yoga/PT and physio exercises – my yoga ability is about 5% of my pre covid self. The yoga/PT classes have given a structure to my week, given me hope for the future and a place to feel I’m not going through this alone.

I’ve learnt from my recent relapse home alone is the best place for me to heal at the moment as I can go at my own pace and rest in the quiet I need. (I’ve stopped yearning for a day trip to the beach or a week in Cornwall). Most of my life has moved downstairs I only go upstairs twice a day for my daily period of complete rest and to bed at night. Thankfully my toilet is downstairs.

Family members recently got my car back on the road and sold which was a relief. Although others seemed more worried that my car hadn’t been used for over a year than I did – just getting through the day takes all of my effort. Yet I still have transport needs. Getting a taxi is awkward because I  have to sit cross legged on the seat and the driver may not like shoes/feet in their seats.

I have improved I can now bend forward, kneel and even crouch – until very recently I had to sit with my bottom on the floor when putting stuff in the washing machine or oven. I did feel immediately weird when sitting with my legs down but now I can now sit with legs down to put on my socks -but not for longer. Thus because I can’t sit with my legs down I don’t think I could use a wheelchair- I’d need one I could sit cross legged in or with my legs out front.

So there is hope I will improve – at a pace that I’ve accepted will be frustratingly slow. But for now I have to pass up invites to dinner, celebrations for milestone birthdays or seaside camping trips. One face to face visit is my norm at the moment – some weeks that’s just my home help. I’m often just too fatigued to reply to messages while my memory is there, my recall ability is that of a goldfish. My social circle has shrunk dramatically and I’m lucky to have a handful of very kind family and friends who bring me food, give me lifts, hoover, ask if I need anything or just listen.

The NHS staff are working very hard but if you develop long covid getting help from the NHS will be difficult. Those of us who got ill at the start of the pandemic are still struggling to get help. The great long covid clinics you have seen on the TV haven’t been my experience – it seems a postcode lottery. The best advice for recovery comes from Facebook groups and webinars/short films leading medical specialists in Mast Cell Activation Syndrome (MCAS), POTS etc have made with and for the long covid community. Although I’m too fatigued to watch all those I want to and I’m still figuring out the best way inform doctors involved in my care about what these expert doctors advise.

A poem by Claire

This little old man from Egham

Who talked to the birds as he fed um

He laughed all the time, as his nature was thine

This little old man from Egham.

This little old man from Egham

Would sing a nice tune, if you let him

The words were in braille, which told a great tale

This little old man from Egham

This little old man from Egham

John was his name, not Graham

He’s been on a bus, a train and a tram

This little old man from Egham.

My journey with the Coalition

Here is an ode written by one of our Board Directors and long standing members, Jonathan.

After being asked for my thoughts,
I’m putting down words,
It’s up to the readers, if they think they are the best.

Now, what or which words should I use?
I thought of some, a few were discarded,
Here are the rest.

While training my plants to tie them to canes, 
It occurred to me how like a plant or any living creature;
They can grow to a tree,
What follows now is what happened to me, one day at the ATM, I knew I couldn’t see.
What to do, although it was bright, the screen reflected the light,
It blocked out the screen, getting some cash was going to be a fight!

Out of the passing pedestrians came a voice,
“Young man you seem to have a plight,”!
Indeed, I do have one, I sighed,
“Well, I can’t see but I know someone who can”!
A genial voice joined the first, 
It sounded familiar but who could it be?

With his help the right buttons were pressed, I got my lucre, no more to be addressed.
Well, actually it was really the beginning of how I came to be ultimately meeting Maya and the others via Zoom, today at three!

After thanking this kindly duo,
They informed me that they were just two of a group.
Not musicians or militants, more just kind hearted just out to survey,
Egham my home for Accessibility.

After a few minutes, conversation and explanation, came the invitation.
Come to our meeting on Monday, with some listening and observation,
I went to that meeting and was impressed,

All of this was about seventeen years ago.
What happened next, I would like you to know.
I went to more of their meetings and wanted to help,
We visited all manner of places far and near,
Some issues we solved, but not that many,
Some were not, it needed money, but there wasn’t any!

I was invited to another group with a title long and grand.
I travelled to Addlestone, with a very affable chap,
He had two metal legs, but then what of that?
A metaphorical seed had been planted linking some similar groups.
The Runnymede Access were forming a troupe,
To make life better for people like me,
For others also.
For plants to grow they need Sun.
In this case, much work would need to be done.
Me, I’m disabled but a user of services.
I was and still am,
A Service User in a network of people with needs,
Here’s where it leads, 
To The Coalition  
A couple of years passed, and we helped each other to 
Develop a group first of a few dozen but growing, not out of hand, slowly but surely the Coalition expanded, 
From all over Surrey, together we banded,
In meetings large and small.  “Come to or AGM”
So I did, my physical vision departed, but still I could see, the Coalition was for me. My life did not stop, 
I didn’t want to mope and complain, after all, being blind doesn’t cause pain,
It’s when you walk into a lamp post or the door of a train.
Around me were people in long term pain, did they complain?
No! so why should I, to me it was plain.
A few years later, I was elected to become a Director.
To sit on the Board, not in a posh City office but in a room at Astolat.
The Knights sat at a big table, not round but still stable.
The first two kind folk who encouraged me to join them, have since left this Earth but Pat’s voice still echoes in my head,
It was some items on the Talking Newspaper he read.

Move on to twenty and twenty,
Both the Coalition and technology had moved on Suddenly a rumour was on.
No, not a rumour but fact, by a virus, the world was being attacked. Lockdown was keeping folk prisoner and could they couldn’t get out.
How can we help the mobility and sensory disabled, well with Zoom they could be enabled.
They can learn that there is a world out there.
My McGonigle rhyme is nearing its end.
The Coalitions Zoom have much encouragement to lend.
I have mentioned Pat and Edna, but there are others to mention, Carol, Yasmin and Clare, so many others, Nick, Anna and Pete, Cliff and others now gone, but thanks to Maya, this ballad could be turned into a song.
It’s not classical in nature, just a simple narrator. It’s not a real word, but for tonight my task is done.
We Zoom groups meet and have fun, smiles and carry each other along. I hear the smiles and frustrations, but being enabled to communicate helps the days go along.

SMS

Why is life made difficult for those who cannot hear?
When simple things could help so much and that is very clear.

Hearing loops are helpful  if installed or working,
But not so good found in a desk or in a cupboard lurking.

How to make appointments we’re very often asked and this is why we need your help to complete this task.

How is contact made by phone if you can’t hear a reply?
But an SMS number would do the trick and that you can’t deny.

The adding of a number should been done as  routine ,
On all official documents
by the Public seen.

We encourage you to help towards spreading this request.
We leave this safely in your hands and know you’ll do your best.

From our members

Our members are wonderful, wonderful people, and we all know it. They have various hobbies, and numerous talents!

We would like to promote your creativity here, on our blog, so if you wrote a short story, or a poem, or if you painted a picture, took a lovely photo, please, share it with us so that everybody can enjoy it!

Click on this link to see what other members wanted to share with you.