Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Tuesday, 18 January 2022

Beware of Tickbox Tests with Myalgic Encephalomyelitis

Many years go, I took this Goldberg Depression Test and the score I got on that day was 77. [Over 54 is classed as Severely Depressed.] Today, taking the test purely responding on face value, my score was 81, to which the feedback was, "You appear to be suffering from severe depressive symptoms commonly associated with serious depressive disorders, such as major depressive disorder ...

Yes, agree appear to be. However, I know I'm not depressed. I have Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). And I'm angry.

Over the years, I've been presented with versions of such tests at various times, which have not necessarily been for purely mental health assessments. Although, I've also been miss-diagnosed as being depressed on various occasions and, in the early days, even I wouldn't have - didn't - contest that. Even 'well-meaning' (I'm not sure they are) ME/CFS, fibromyalgia and pain services use this type or similar tests in their assessment and screening processes and even if the purpose is to 'rule out' depression, I'm not convinced that would be the result.

To me, it’s easy to see how physical diseases get wrongly blamed on psychological causes, although the reason they do - in my opinion - is down to ignorance and (possibly wilful) inadequate interpretation of tick box results. 
  1. I do things slowly? Of course I do some things slowly. Sometimes deliberately while pacing. Mostly because I’m physically ill and utterly exhausted. The first time I really noticed it was when I was interviewed and listened back to the audio recording and could hear that I was talking slower and, while not slurred, sounded like I was a bit stoned or slightly impaired. This obviously had a physical / neurological, not psychological cause.
  2. My future seems hopeless. It does. I’m barely able to leave my bed, let alone the house, due to being, you know, physically ill – and I've been getting consistently worse since 1973 –  with an illness that is barely believed, criminally under-researched, utterly untreated and even less cared for ... so yeah, no f*cking surprise, my future seems pretty hopeless. Tick.
  3. It is hard for me to concentrate on reading. I have an illness that has physical causes that makes it hard to concentrate. So tick. I really can't take in anything beyond two or three paragraphs, because after that it may as well be written in Sanskrit for the amount of sense it will make. It's impossible to follow the plot of a book. Because of pain and fatigue in my hands, wrists and arms, I can't hold a book, or even a Kindle, so yeah, you could definitely say that it's hard for me to concentrate on reading.  
  4. The pleasure and joy has gone out of my life. I feel nausea, general malaise, serious pain, can’t even stand up, much less do any of the things I WISH I COULD DO, so of course the joy has kinda gone out of life.
  5. I have difficulty making decisions. Should I have a shower? Will the warm water help pain, or will the effort cause exhaustion and post-exertional malaise? Should I leave the house for an hour's pleasurable outing, or will the payback be unbearable. Of course it's difficult to make decisions when simple things that healthy people take for granted have these repercussions.
  6. I have lost interest in aspects of life that used to be important to me. When one's physical illness means that the cost of doing them - in terms of exhaustion, post-exertional malaise, pain, etc. - is so high, is it any wonder if we dismiss doing things that once would have been important to us? In fact, I'd counter that it's a necessary precaution to shift priorities in order to let go of doing too much, to facilitate pacing and reduce symptom exacerbation.
  7. I feel sad, blue, and unhappy. Imagine feeling the most ill you have ever felt with bad flu and a hangover, day in, day out, 24 hours a day, 7 days a week, for almost 50 years and tell me you wouldn't feel a tad sad & unhappy!
  8. I am agitated and keep moving around. Nope. One that doesn't apply! Well, agitated as in angry for the way we're treated. You could score me as moving around for the constant visits to the loo with an overactive bladder! :)
  9. I feel fatigued. Utterly. But the fatigue I feel is not that kind of fatigue, but they don’t qualify it. My fatigue isn't 'a bit tired', it's where effort causes a total system fatigue and collapse; where one physically can't make muscles work, even internal organs over which one has little or no control.
  10. It takes great effort for me to do simple things. Yes, even contemplating simple things takes great effort: it’s no surprise, given the nature and severity of my physical illness and the amount it disables me.
  11. I feel that I am a guilty person who deserves to be punished. Well, my mother would have wanted me to feel this guilt, but she failed. But given the amount of medical gaslighting we come in for and the level of stigma, which often leads family members and society to doubt us, or worse pile abuse on us for being ill, I have no doubt that many are made to feel this guilt. This still does not apply in the sense that the tick box test was asking though.
  12. I feel like a failure. Ditto the above. We aren't exactly encouraged to think being this ill, even when believed, is a success, are we?
  13. I feel lifeless -- more dead than alive. Of course I do! I spend 24 hours a day in bed on at least 6 days a week and the farthest I 'travel' is to the bathroom and back. This existence (it's not a life) is repetitive and, but for the simplest of activities, utterly pointless. I also feel constantly unwell and I've been ill since 1973 and not yet had any treatment. It's a living death.
  14. My sleep has been disturbed -- too little, too much, or broken sleep. All of the above. My sleep has been disturbed since forever: but ditto, this is caused by physical illness (and makes the physical illness worse). 
  15. I spend time thinking about HOW I might kill myself. To be utterly honest, yes I do. Many times I have reasoned that I find my illness and symptoms unbearable now, so if my quality of life were to reduce any further, death would indeed be preferable. I say this dispassionately and logically.
  16. I feel trapped or caught. Having been ill since 1973, having had no treatment, no respect, very little care; been neglected, gaslighted and abused by the medical profession; being imprisoned in the house by illness and unable to see any way of changing this, yes, of course I feel trapped.
  17. I feel depressed even when good things happen to me. In a way. Even a pleasurable outing causes repercussions; a 'nice' meal causes gastrointestinal symptoms, or PEM from sitting up for a few minutes; couldn't even manage to put up Christmas decorations ... I can't think of a single good thing that could happen that wouldn't also cause some repercussion or payback and almost 50 years of this means that one is not really moved to happiness much.
  18. Without trying to diet, I have lost, or gained, weight. This is a well known symptom of ME/CFS. Some lose weight as they're unable to eat. Some gain, due to buggered up metabolism. Many gain weight because of prescription drugs (Amitriptyline is a frequent culprit.) Some, maybe because food pleasures are all that's left. It isn't from a purely psychological cause.
That’s without counting other things that are bound to affect one's life at various times like housing problems, financial problems, politics … any manner of things that are not depression per se or are very good reasons for it. 

What I'm trying to demonstrate is that truthful answers to such tests will suggest depression – if taken on face value - which is all that is done with them. 

So, why am I bothered by this? Well first, of course, I'm exorcising my anger! 

Last year we finally got new NICE guidelines (Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management) that SHOULD have killed the psychological stranglehold on our physical disease, but I keep seeing reports and comments where it's clear that's not the case and reality is still being denied or distorted; services that have nothing else to offer are having to re-word, but essentially aren't changing their approach; there's still precious little support for ME/CFS in the media to change the perception and yet the charities have been practically silent. And now, on top of the decades-long contempt for ME/CFS patients, comes the vilification of LongCovid sufferers. 

Anyway, I have enough experience to imagine it likely similar tests are still part of an assessment or screening process for ME/CFS or LongCovid services. There is unlikely to be any concession for qualifying one's responses and those scoring them won't 'read between the lines'. What would I do if I were given one of these in an ME/CFS context again? I would spoil the paper and write on it that it does not apply in this context. I would not fill it in. You must make your own decision.

Friday, 31 December 2021

2021 a year in review

Hythe on a dull and miserable Christmas Day

The first time I left the house in 2021 was to Escape to Hythe on 25 Apr. A lot of the reason for that was feeling so ill after my first Covid Vaccination in February - from which I have never fully recovered back to my usual baseline. Imagine how bad actual COVID could be! It makes me even more concerned about making sure I don't catch it - vaccinated or not and I have now had both doses and booster - and ever more angry at the complete lack of protection being afforded us.

The next time I went anywhere was to Hamble on 30 May and the consequences of that 1¾ hour outing were really too much to make it worthwhile.

We tried to go out on 14 Aug, but I twisted my ankle and had to abort that.

North Devon 2021

We did have a holiday in north Devon in Sep and I really should be grateful for that (and am for the walk along Saunton Sands, although the consequences of that simple thing were a bit much), except the preparations running up to the holiday were fraught with stress and difficulties, the accommodation really wasn't great; food shortages had an impact; there was so much I was unable to do because it was inaccessible due to being so busy; where I could not stand to queue and, to be honest, I came home wanting to cry, feeling like I needed a holiday.

Didn't go out again until 19 Dec to Bournemouth Christmas Tree Wonderland. 'Paid' for that with Post-exertional malaise (PEM), but for once, it was worth it.

And about 10-15 minutes in Hythe on Christmas Day.

Otherwise, this Christmas has been as dull as the weather. There has been far too much making do, although compared to most people we really haven't had many excesses and still the richer food than normal hasn't agreed with either of us.

As for 2022, my expectations are low and I think they need to be to be able to cope, otherwise the disappointments would be devastating. COVID isn't going away any time soon. If we can manage to get away to somewhere where no other human wants to go, but is still nice, that would be a bloody miracle. 

Sunday, 26 December 2021

Christmas 2021


'Upcycled' containers and home made crackers 

Myles trying to open his own pressie

Unwrapping the Class A Catnip

Noah looking dapper in his new bow tie

Christmas 'socks' in Hythe, Hampshire

Guerrilla crocheters have attacked in Hythe!

Christmas Day walk along the shoreline of Southampton Water at Hythe, Hampshire

Monday, 20 December 2021

It's beginning to feel a bit like Christmas

Crowds at the big tree in the Bournemouth Christmas Tree Wonderland

Last year, I'd wanted to at least see some Christmas lights, but it never happened. This year, I wasn't going to put up with being disappointed: I needed to feel some Christmas atmosphere and have some pleasure. So, knowing I'd get one chance, I decided to research the Christmas offerings in the area and decide which one would bring me the most Christmas spirit for the least energy expended. 

The things people with energy limiting conditions have to think of would boggle your mind if it doesn't affect you. Youtube, in this, is a life - or at least energy - saver, even as I watched Christmas lights and markets all over the world. 

Winchester Christmas Market didn't really have the appeal I was looking for and I wasn't convinced of the proximity of lights; Southampton always seems to make the annual Christmas Tat Sheds look like it's full of bored people, just queueing for junk food; I've got to admit that Gunwharf Quays Christmas Village in Portsmouth, which is new this year, would probably have been my first choice, but parking and access is always a problem - train would be perfect, but not during the plague - and thus, Bournemouth Christmas Tree Wonderland came out favourite.

So yesterday, late afternoon, we drove over to Bournemouth. Plus point: we got a disabled parking space very close. Negative: am I imagining COVID, coz it doesn't look like anyone else has even got the memo! OK, a minority of people were wearing masks, even outdoors, but the majority are not and are bunching up with strangers in crowds like it's 2019. We could keep moving and some distance around the Christmas Market area, but when we tried to enter the Lower Gardens, there was quickly a bottleneck of people and I will admit that I turned around and ran out of there, coming this close -><- to having a full-blown panic attack.

However, we regained composure and followed the almost abandoned and empty roads and paths around the side of the gardens and dipped in from side entrances, stopping before getting near the crowds of sheeple crushed into the middle. 

Hence my photos are crap, because they were taken with zoom, on a phone, from a distance, but hey, I got out and saw something other than my one room!

Today, of course, EVERYTHING hurts and I have a sore throat, I'm sneezing and I feel like I'm coming down with flu - typical post-exertional malaise symptoms - as ever, the required "payback" after any outing. I'll be resting until Christmas.

Bournemouth Christmas Tree Wonderland

Monday, 27 September 2021

An excursion to the dining room

Not my cat

It's been two weeks since we got back from holiday and I've been resting ever since. Last week I had a short-sharp-shock course of Aciclovir - to try to bring my super-susceptibility to recurrent cold sores under some control - and on Thursday, a nurse came to the house to give me my flu jab (to which, I've had no reaction, not even a sore arm). As on previous occasions that I've had courses of the antiviral, I began to feel a bit more clear-headed and compos mentis.

Yes, an improvement after antivirals. Probably not psychological then!

On Friday, I'd had a long chat on the phone to BF in Australia, so for someone with myalgic encephalomyelitis, these were a couple of "busy days". Otherwise, I'd mostly laid in bed and done relatively little either mentally or physically. 

So, on Saturday, I was daft enough to think I could "eat out". By "eat out", I don't infer getting all togged up in my finery and hitting a Michelin star eatery, I mean, leaving the bedroom and going downstairs to eat at the dining table with him indoors, having had the quickest and most cursory shower first.

Ate my meal (all freshly cooked, from non-processed ingredients) and a fruit-only desert, when suddenly, with no warning, I began to overheat (I'm WAY beyond menopause, so it's not that) began to feel unwell and to grey out (Pre-syncope). At first I couldn't move, but felt like I was going to faint and fall off my chair. As soon as I could, I slid myself down and laid on the cool floor. When it passed sufficiently, I crawled back upstairs to bed on hands and knees.

It left me exhausted and feeling like I was shaking all over from extreme exertion, but with no external sign of shaking. I had a terrible night, sleeping lightly, waking up constantly from vivid dreams, feeling like my brain was shaking inside my head and with a pain in my stomach that was like it'd been kicked.

It's like my system is so fatigued that it can't manage sitting up and digesting simultaneously, possibly exacerbated because I'd had carbs (potato) at both lunch and dinner. I already suffer lactose intolerance and I'm wondering if this is some sort of increased carbohydrate intolerance. Funnily enough, many years ago I'd adjusted my diet to not have carbs more than once a day. It's not always easy to achieve, but I wonder if it may help to be more strict on that. 

All day Sunday, I had no alternative but to stay in bed and was even unable to sit up. I couldn't increase my angle of recline beyond two pillows, because it would increase the pain in my stomach to feel like I was constantly doing sit-ups and would bring on horrendous feverish headaches with nausea. It's no better today. As "being confined to wheelchair for much of the day" infers an ability to sit up, we have to conclude that I'm worse than 80% on this scale. That now puts me into 90% and severe. It's very frightening, because, after consistent worsening over 48 years, there really is only one place left to go and, with no care and no treatments, only one way to prevent going there: avoid everything.