Tuesday, 13 October 2020

Long Covid recognition but what about ME/CFS?


I’m taking a diversion from the usual writing topics for my blog this month as none of us live in a vacuum and let’s face it, Coronavirus had been dominating our lives for most of the year.

 

There’s been a lot of talk about ‘long Covid’ and I’m very glad that it’s being taken seriously. These are the lingering and debilitating symptoms after having a bad hit of the virus. People with long Covid experience a physical, mental and cognitive toll on their ability to do the things they used to be able to do.  They feel exhausted after exercise or a short walk with muscle pains and general fatigue.  This will all sound familiar to those of us who have been diagnosed with ME (sometimes called CFS and I won’t go into the politics of that just now). One of the tell tale symptoms of ME and one of the diagnostic criteria is what is known as P.E.M or Post Exertional Malaise.  This can be physical, mental or social.  It usually doesn’t show up immediately after the activity but people with ME or PEM will typically ‘crash’ the following day or some hours after the event.  

 

Most people with a diagnosis of ME can pinpoint the illness that led to their disability. For me it was a very nasty virus in 1994 and a recurrence either of the same virus or a different one six months later. Both bouts were characterised by severe coughing, pleurisy, breathlessness (One GP thought my lung might have collapsed) and months of acute pain around the chest and back.  I wish that the medical community had told me the strain or name of the virus back then – rather than just, ‘there’s a nasty cough virus going round’ so at least there was some way of checking back and comparing development with others who suffered from that same virus and had a similar outcome.  Of course, as with Covid, everyone’s immune system reacts differently and there are of course other virulent infections and coronaviruses that have circulated before and after the one I had. But having a name and strain is empowering – it means we know what we’re dealing with, rather than foundering in the dark, and experts can chart its progress, build up a picture and develop effective treatments.

 



The sad thing is, not that people shouldn’t be taking Covid seriously, but it has taken Covid for people to use basic common sense when they have an infection. Back in 1994, I was around infected people at work and was subjected to ‘large viral loads’ as I was around such people for large parts of the day. I can actually remember the person who had a severe cough in 1995 and spending a large part of the day with her in close proximity – this too, when I was already vulnerable from the previous bout. But because there was no real public awareness and entrenched attitudes – some people thought it showed their fortitude and strength of character to be able to come into work and battle on when severely ill. 

 

However, in the light of Covid, things have had to change. Hopefully we will never go back to the casual and foolish attitude of people expected to ‘come into work’ when clearly they should be in bed. Far from anything else, it’s a false economy in ‘saving the economy’ if the whole work force is infected instead of one.

 

The government have announced they are setting up specialist clinics for people suffering with ‘long Covid’. Before this announcement people were being referred to ME/CFS services.

 

But those of us who have suffered such symptoms for years can't help but feel slightly miffed about the neglect of M.E. these past four decades and the ridicule and dismissiveness that has been heaped upon us. I remember the same conversations going on in the eighties.  I hope the conversation will change now.

 

Dan Wyke recently wrote in the Facebook group ‘Invest in ME Research’ summed up perfectly the fears and frustrations that many people with ME share: “The frequent sight of doctors publicly bemoaning the lack of understanding of Long Covid and asserting its seriousness/realness is particularly galling to ME/CFS patients whose chronic, post-viral disease has been ignored by them (and to some extent the media) for decades.

Misunderstanding/ignorance regarding ME/CFS is so entrenched within the health profession that even now many doctors are incapable of seeing the parallels with Long Covid. They aren't aware of the extensive body of ME/CFS research or (limited) treatment possibilities for themselves/their new patients.

The prospect of unwell GPs raising awareness of Long Covid, while continuing to completely ignore ME/CFS, is a very real possibility.

Should GPs succeed in creating a separate medical category for Long Covid and a narrative of public understanding/acceptance (denied ME/CFS), it will be another cruel blow to the +250,000 ME/CFS patients in the UK.”*

 

* I wish to thank Dan Wyke for permission to quote him. 

Thursday, 2 July 2020

Unhip and Unloved!



At home I have a cupboard full of printed books that are what you might call ‘seconds’. They’re either proofs or they’ve had their covers updated, or some of the text updated or typos corrected. Sometimes a small detail or sentence has been added or omitted or other minor structural work performed. To all intents and purposes they are as near as perfect as they could be at any point in time, otherwise I wouldn’t have paid for the proofs.

But what to do with these slightly imperfect spares? I did try giving several away as review copies on Goodreads some years ago, alerting any people who asked for a copy that they were seconds. Not only had these books been paid for out of my own pocket but I’d also bought the padded envelopes and paid for the postage (I did a UK giveaway only). But hey, if it got me a few more reviews it would be worth it, wouldn’t it? I had done a giveaway once before on Goodreads and I may have received one review as a result of that so I knew I wouldn’t get many. But the second (and last ever time) I actually got none. So I crossed that off my list as a viable project. We live and learn.

But still the spares amass. I try and improve on my covers and my latest experience has confirmed to me that a book is most definitely judged by its cover.

You see once CV-19 hit our shores and people had more time and less money I thought it might be a perfect opportunity to give away some of these imperfect books of mine. But I didn’t want to leave a basket of books in my porch for passersby. It would have been too embarrassing and a girl has her pride. I don’t have a lot of confidence and I live in small town. Online is where I do most of my trading!

But then during the dry sunny months of April and May, I noticed the lovely gardens opposite me began offering a box of secondhand children’s books. The offer was for people to swap. Perhaps one or two books aimed at older people started or maybe I began the trend, I can't remember now.  But I plucked up the courage and took over a copy of Little Guide To Unhip with one of its old covers, together with another used but acclaimed book, and snuck them in the box when nobody was looking. I went back on successive days and took a sneaky peek into the box when I passed it - other books came and went but Unhip remained! The weather was so dry that, after a while, the people organising this just left the box of books in the morning and collected them in the evening. Then one day the heavens opened. Unhip was pelted on (maybe it should have gone under the umbrella of the plants table - there is some sense and irony in this because the unhipness of brollies is mentioned in the book!). Next time I went in the garden there was Unhip with misshapen and cobbled pages, the way pages dry after a good soaking. Who would want it now? It least before the rain it had been in almost pristine condition,



But over the coming days more books were appearing and it also looked as if Unhip had gone (or maybe the garden librarians had felt sorry for the tatty thing and decided to put it out of its misery.) But seeing it gone I got bold. I took in an old proof copy of Far Cry From The Turquoise Room and snuck it in the book box.

A day or two later I saw Unhip back in the box. So it hadn’t been adopted after all! However it wasn’t long before Turquoise Room had gone and never reappeared. So I can only assume it found a home. Maybe the doll on the front appealed to one of the children - even though it’s an adult/young adult book.







But every time I walked through the entrance subsequently I had to do the walk of shame and see an edge of Unhip peeping out from the other books. After a while I was past caring. I started to see the funny side. As my sister said 'the book is so unhip that nobody would dare take it.'

Once June came, the weather became more unsettled and the box of books was no more.  

There is a moral to this story somewhere - I think it's not to be too precious about your books and to realise that you have to laugh sometimes in this indie publishing business to save yourself from weeping.



Sunday, 3 May 2020

Is a life indoors valued less?




I have been thinking about this a lot since lockdown - and I know I’m not alone in this; that many other introverts will have been thinking about it too.

It’s the extraverts who are finding lockdown the most difficult - not being able to physically meet up with friends, to socialise every day, to be out and about. I know it’s more complicated - that there are introverts who like to go out and walk alone and think. I am restricted because of physical health conditions as well so it’s just as well that my temperament is suited to the indoor life. I get it, that people with other mental health conditions, especially depression, need that social contact in order to boost their well being and self esteem. I am also very fortunate in that I’m not locked down alone - that I have company. I also miss seeing my family physically and that physical contact with them.

I am also very well aware how a life indoors may be a living hell for people stuck with a violent or abusive partner or family member. Or having now outside space to call their own.

But the flip side of all this is that people are waiting for ‘life to return to normal’ - as if somehow this indoor life is unnatural and undesirable. It’s certainly not what the government have in mind when they talk about easing restrictions. Society always seems geared towards extraverts as a default so that those of us who don’t fit in by temperament feel excluded.

Now all that had reversed and we’re the ones who have the skills and strengths, because although there are disruptions to my life as mentioned above, for me it’s business as usual. I was living a mainly indoor life anyway because fatigue, pain, anxiety and hyperhidrosis make the outdoor life largely unpleasant and unenjoyable and an uphill struggle.

For me the lockdown has exposed how we as a society view people who live their lives indoors. As a writer I am used to it and have plenty to keep me busy- energy and health permitting. In fact I have found more demands on my time and energy trying to keep up with friends and relatives in lockdown - or people who now suddenly have more time on their hands and assume I do too.

But the conversation is happening. I’m hearing people not wishing to return to their pre-lockdown lives on the hectic treadmill. Now people have had the time to reflect, many are enjoying the slower pace, hearing the bird song, the more natural pace of life. This isn’t to say that there won’t be an economic fallout and that many businesses will need so much help to get back on their feet. The high street was already on its knees before CV-19 and it was obvious that it needed government subsidies to stay alive and to keep that vital sense of community.

So back to my initial question. Is a life indoors valued less? I think it was. But I hope it won’t be in future. 

I have enjoyed embracing my indoor self and hope society will value those introverts among us more in future!













Friday, 20 March 2020

Tips from a Natural Self-Isolater



I expect a lot of people have similarly taken to the blogosphere as a result of the extraordinary and terrifying times we live in. Life has changed so dramatically in two weeks and yet it's heartening to see the  kindness and generosity of the human spirit at such times. Little community groups springing up to help people in their time of need, whether to get their prescriptions, shopping, or just looking out for an isolated, vulnerable or elderly neighbour. Alas, it's also brought out the worst in people too, clearing the shelves of supermarkets, but that's for another time.

I'm really hoping that all those who've been laid off because work has dried up, those in insecure work, the self-employed and those who rent will be given financial help and security urgently, so they're not having to worry about the future or the next pay cheque. 

Many others will be self-isolating at this time if infected with CV-19 or recovering but have to remain in isolation.

Many of us who are introverts and/or differently abled (whether physically, mentally or both) are natural self-isolaters so feel well-equipped to deal with life indoors and this is what prompted me to write this blog. Yes, things have changed there too in many ways, not least being able to get home deliveries when needed or the items we normally buy. Many of the home improvements that we had planned to do have also had to be put on hold.

But for me there's always plenty to indoors when energy permits!

As a writer there's always my latest Work In Progress to be getting on with, and there's never just one! Older books need promoting or bringing out in paperback.  Or the poetry collection some of us online are putting together as and when.


However, it may be an opportunity for you to pursue or take up a new hobby: painting, crafts or photography. If you have an outside space there are always things to photograph. You can even do these from your window: clouds or sunsets or rain on the window pane. Or maybe pictures of your furry friend(s). Lots of skills can be learned enhancing those pictures in Photoshop. I have many old photos and slides still to be uploaded onto computer. These are social documents of a bygone age and are a source of pleasure and reminiscence for loved ones.

The picture below is one my father took as a slide in 1964 of Liverpool sea front.  Th slide was badly damaged but I was able to use a slide converter and then restore a lot of it in Photoshop.  It's also a social document.




Or what about all this books you've been meaning to read? Authors love readers too! There are so many authors looking for readers. There are any number of ebooks as well as paperbacks. Readers are the new writers. If you offer to review books for authors I can guarantee you will be inundated with free review copies so you may wish to narrow it down by your favourite genre. You can even start your own review blog.


Perhaps music is your thing.  There are so many online tutorials on how to learn a new instrument.  Or if you're anything like me you might be glad of having some time to bring your music library up to date! I have a backlog of songs I want to put on my iPod.

There are so many distance learning things on YouTube or in other Apps. You can polish up your language skills. My mum has used an Apps called Memrise and Duolingo:




I love a good cryptic crossword too. Lovatts do a free online one and the word goes green if you've got it right - always helpful. They're great for increasing your vocabulary and keeping your brain exercised. 
There are plenty of interactive games online too. 

If there are a few of you stuck at home, maybe it's time to get out the old board games.


It's my feeling that a lot of the old-fashioned more simple pleasures will be rediscovered. No bread in Tescos? No problem, you can make some soda bread with just a few ingredients. 

I've been thinking of writing some good old-fashioned letters too. Emails are fine but nothing beats the aesthetics of a handwritten letter fashioned in your fair hand and that's for keeps. Maybe you know an elderly person who lives alone and is a bit daunted by technology and the internet. Just think what it would mean to them to receive a handwritten letter.


It's important not to forget your physical exercise too and I'm not the best one to advise on that! But as long as you keep social distancing in mind, you can enjoy local walks, gardening (maybe to grow some of your own vegetables) or even dancing to the music on your iPod!



These are just a few ideas and things that have enriched my life. 

Of course there will be some of those boring chores you've put off for ages - I hear there's a lot of people sorting out their wardrobes at the moment!

I do think that life is changing rapidly on a daily basis as we try to rethink the way we do things.  Suddenly it's dawning on us all what's important in life and out of this tragedy, I hope this growing sense of solidarity and support won't be short-lived. I hope there will be no going back to the selfishness and greed, the divisions and the polarity. 

CV-19 has been a great leveller, it doesn't discriminate, and we may look back on this time as earlier generations looked back on WWll, as a time when we pulled together and triumphed in adversity, when we rebuilt the social fabric to benefit all.

Just to end with this lovely quote sent by a friend:

"And the people stayed home.  And read books, and listened, and rested, and exercised, and made art, and played games, and learned new ways of being, and were still.  And listened more deeply.  Some meditated, some prayed, some danced.  Some met their shadows.  And the people began to think differently.
"And the people healed.  And, in the absence of people living in ignorant, dangerous, mindless, and heartless ways, the earth began to heal.
"And when the danger had passed, and the people joined together again, they grieved their losses, and made new choices, and dreamed new images, and created new ways to live and heal the earth fully, as they had been healed."
- Kitty O'Meara

Monday, 24 February 2020

It's a small world sometimes ...

...when a Facebook friend mentions he has an ancient copy of your book in his possession. 

This may not seem like a coincidence to many well-known authors - making friends on Facebook and then discovering someone bought one of your books years ago.  But for someone like me, a relative unknown, I find it one of those synchronicity moments, where you're reminded that the world is actually quite small. 

It's always interesting to hear how one of the books you've authored ends up in another's hands - and even more when it's one as long ago as 1990, especially when it was the US hardback of the book, and especially where it was only a short print-run.

This happened last week. I've been friends on Facebook with someone called Ian for a few years. The interesting thing is we didn't connect because of mutual reading and writing interests. In fact Ian's moniker was Jah Wobbly before the Facebook police ordered him to give what I assume to be his real name.  I thought the 'wobbly' referred to his disability or differently-abled body as that's how we came to be friends - through mutual campaigning groups against cuts to services and benefits for the long term sick and disabled.  I've needed to update this blog though as Ian has put me straight: his  Jah Wobbly moniker came "from an old Jamaican gent that used to drink in the old queens head on the Stockwell Rd London. I won a bottle of Jamaican Rum and (being the only white boy that used said boozer) shared said bottle with a few old Jamaicans, got extremely drunk, got up to put some music on and could hardly stand, wobbled all over the place and they were howling with laughter, came back and sat down and was told that from then on I was going to be called Jah Wobbly!' Ian said his disability came later when he snapped his Achilles Tendon. But Ian is quick to point out he prefers being thought of as 'wobbly' which sounds a lot better than being called disabled.

Anyway, with a moniker like Jah Wobbly, Ian was/still is obviously a punk music lover! When we first connected we chatted a lot about music and shared songs and a lot of bantz, but as is the way with Facebook, settings get changed and altered, and suddenly people seem to disappear from your online life and timeline. 

Then Ian's posts mysteriously started appearing in my newsfeed after a long absence and I left a comment. Facebook algorithms mean that commenting again on friends' posts - friends you thought had disappeared into the digital ether - suddenly re-appear again with a new regularity. I must have had a promotion on for Fall Of The Flamingo Circus and seeing it, Ian mentioned in passing that he had a copy of it somewhere. I naturally thought he meant he'd bought a copy of the e-book and by 'somewhere' I took it to mean on a Kindle or iPad.  Nothing unusual about that.

But then a couple of weeks later a picture of the cover of the hardback copy of this book - only published in the US - appeared with a tag on my timeline from none other than Ian to say 'I knew I had a copy somewhere'.

The print-run was pretty small and I only have one copy left myself of the hardback edition in my collection (one of the complimentary copies I got when it was first published).





This is how our conversation went: 

Me: That's a really old copy Ian! I thought you meant you had an e-copy. That's the US hardback from 1990. Is that when you bought it or did you come across it later in a charity shop, lol? I only have one of this left myself though my mum may have got one somewhere. I do have a couple of the paperbacks still.

Ian: must have been 2nd hand bookshop Kate tis where I pick up most of my books unless its a rare music one I want..I think I brought it coz I liked the artwork and Flamingo's

Me: So you did judge a book by its cover Ian :)

Ian:‪ Hahaha sometimes - so its a rarity in hardback?




Me: Well there wasn't a big print run Ian nor in the UK! But I guess a rare book by an unknown author ain't gonna make you rich, lol! Although that is my best known one :D

Ian: yours is not the only book I've brought like that




‪Me: So I guess you must have picked it up years before we met on FB

Ian: yeah I guess so Kate I do buy loads of books always pop into the bookshop in town

Then Ian shared the back of the book - same as my only hardback copy obviously, except with a lot of added library information.



Then a bit later on the thread Ian said: I remember where I got it from now a library  in the US closed down and the 2nd handbook shop brought a container load of books and I had first pick for helping catalogue them.

Then he enclosed a photo of the actual library ticket inside the book!



So Ian's copy of my book has been on rather a long journey and has a history.  I love the fact that it's had an interesting journey and the fact that Ian was a Facebook friend before and not because of the book which makes it that bit more curious. In the first draft of this blog I mentioned I had no idea what Ian felt about the bits between the covers and that I didn't ask! I said he'd probably long forgotten but that this tale was an extraordinary one in itself - to me, anyway.  Ian put me straight on that too - he says he has a tea chest load of books he's not read yet!  I know the feeling...

So, do you have a 'synchronicity' story of your own? If so, I would love to hear from authors and readers alike!

Friday, 3 January 2020

2020 Goals


Happy New Year to you all!  2020 certainly has a ring about it, if for no other reason than its description of normal vision!  For the last few years I have made myself some goals for the new year. Keeping on the vision theme, I suppose you could describe these as vision for the year ahead. I've found it's helpful to do that and to see how many I've achieved at the year's end.  So here we go for this year!


    Writing

   1)  I really hope to finish the follow up to Down The Tubes this year.




    2) It would be nice to get on with another Little Guide seeing as it's nearly a decade since I had Little Guide To Unhip published. I have been doing another one but maybe will do them as a blog for now. And talking of blogs, I do hope to do more blog posts than last year!

   3) I also think it would be great to bring out a collection of poems from Don’t Go Breaking Our Arts, our creative group for people with disabilities. I have thought this for years but I'm not very organised and so would to collaborate with other members and and also decide where to send any royalties - I wouldn’t expect many as these are soon offset by promotion costs etc

    4) I hope to get another book out in paperback - this would now be one of the older ones now that have gone out of print, since all the ones previously unpublished are in paperback now.

    5)  Begin the autobiography that's been brewing for a few years now and also to crack on with some more short stories/do something with my poems


   I think this is way too ambitious seeing as my energy is very compromised but anything unachieved can be carried over to the next year (see below).

    Health

   I want to continue trying to confirm or eliminate conditions that may be contributing to causing my many symptoms eg autoimmune illnesses like Sjrogrens Syndrome and Lupus. I recently had a positive result for ANA antibodies which can be a sign of an autoimmune illness such as the above or rheumatoid arthritis. These can often go hand in hand with Fibromyalgia and ME which I’m already diagnosed with. But the one thing I really want to get on top of is the debilitating hyperhidrosis. That on top of  fatigue means I am semi housebound as the effort and the organisation to get out anywhere uses up too many spoons!




   I have several appointments lined up - one for physio next week. I also have a GP appointment to discuss the antibodies and I’m trying to get a referral to see a dermatologist or a rheumatologist since it is the experts who can look at specific trends and groups of symptoms rather than dealing with the general as GPs do. But the state of the NHS doesn’t bode well and my ME therapist did also say she could recommend some private specialists - I think this was to do with the menopause. That will have exacerbated a lot of pre-existing conditions. I don’t like the idea of private at all but I am quite desperate.

   House

    These tend to be related to the above and are about greater comfort. Better seating in the sitting room, is one such thing - indoor things and comfort becoming increasingly important the more I need to stay at home!  Plus more storage for bedroom eg better drawers.

   A little pod or something for the garden. The one below I saw last summer and like to dream about it ever so often!




  Family

  I hope to try and continue to support family members as best I can, as some of their needs are great or greater than mine.  It is all a juggling act!

   Anything else will be a bonus.

   Please do share your own new your goals or wish lists if you do them.  Maybe you don't, or have given up on them by January the 2nd. I never used to bother myself, although I have had a to-do list for decades!

   

Thursday, 19 December 2019

This year's goals...mostly fulfilled!

That time of the year again. I reached a milestone age this last year and now it's December already and time to review whether I achieved the goals I listed at the beginning of the year. 

Writing Goals

I'm happy to say I finished the first and second draft of the follow up to Down The Tubes. I really hope to get it finished by next year!



My second writing goal was to crack on with another Little Guide.  I have made a lot of headway although it's a slow burner, something to fill in those little pockets of time on the go (when I remember!)

I didn't get round to updating my satirical anti-novel Lost The Plot but I did manage to get another novel into paperback. This was my first ever novel, now called Did You Whisper Back? which won a Southern Arts Bursary back in 1991 (after a major rewrite) and that's been out on Kindle for a number of years.  It's an important story about one young woman's struggle with mental illness and it's set in the 1970s when the stigma was much greater even than today.   I enjoyed designing the cover for it to match the subject matter and era.





Health goals

As I mentioned at the end of last year I was I was diagnosed with Fibromyalgia ten years ago.  I wanted further investigation into ME too as there is a large overlap between the two conditions and I got the official diagnosis this year.  It was agreed for me to have a group of further sessions on activity management with a specialist and I have had one and a half so far.  The half session had to be cut short due to the condition below.

I would still love to get on top of the hyperhidrosis which is worse in the cold weather, paradoxically. In my goals for last year I planned to try CBD oil, and Turmeric with Black Pepper for the above conditions, which may have not helped with this condition but I like to think they're helping in other ways. 



House Improvement Goals

We got our bespoke book shelves and units in our sitting room (now filled with books!), we've had the upstairs shower removed to create more storage space and a shower installed over the bath downstairs.  I do feel better when I have more storage space and clearing things out.  But still plenty to be done.


Other Goals

I've not been able to return to drop in singing sometimes (because of ongoing health problems mentioned above). This is a cause for regret - but perhaps I can get someone to come to me instead.

Knitting - not achieved!

Help my sister with a website for her art - not achieved!  (But she needs to get some art ready for selling, even if only in card form).

Some of the unachieved will rollover to next year, no doubt, when I do next years's goals.  I find it enormously helpful to do this - it gives a sense of achievement and shows you really are getting things done, even when it feels to the contrary.  

When I put up last years's goals, my good author friend Chantelle Atkins said we should also try and arrange for another meet up.  I thought this would be a great idea although I wasn't too hopeful since going out anywhere, let alone travelling, is an uphill struggle. But I decided I'd really like to go to Mudeford and Christchurch on holiday and as this is nearby, we managed a meet up, yay!  We had a great catch up and natter in our AirBnB in Christchurch. Now Chantelle's latest book is just out - yippee!



My favourite beach huts at Mudeford.



I don't seem to have kept up much with this blog this year, maybe that will be a goal for the new decade.  I'd only realised the other day that yes, we're coming to the end of another decade! I do try to keep this blog mainly about writing. The only other blog post I managed between the years's beginning and end was a political one, and the less said about all that the better.  Onwards and upwards.

I wish you all a happy, healthy and creative new year and decade :)