50 Years with Myalgic Encephalomyelitis (ME)

This cat looks how I feel, mostly.

If you want to know what long haul feels like, just ask me. In 1973, at 16, I got Glandular Fever (Infectious mononucleosis), caused by the Epstein–Barr virus (EBV). The NHS still say that, "You should feel better within 2 to 3 weeks. Some people might feel extremely tired for months." Lies! My GP back then had said it would take six weeks, but when I didn't get better and went back to him because I was exhausted and not feeling better, he just said it was my imagination.

This year [2023], I finally got my pension at 66 - I'm also one of those WASPI, 50s women who were robbed - and this year I've had Myalgic Encephalomyelitis (ME) for 50 years. It's as far away from just feeling extremely tired as you could possibly get. And I'm still not better, and I 'effin well cannot still be imagining it! Seriously, the older I get, the more angry I become that we haven't progressed; that there is still only stigma and lies and no real treatment, nor care.

Generally, I don't have the energy to write (and don't want to depress myself), but I feel this 'milestone' needs to be acknowledged and highlighted to draw attention to the continuing injustice that is being done to so many people with ME.

After 50 years, I still couldn't even find an image that properly portrays it.

Anyway, that was the 70s. The GP I had then will be long dead now. He wouldn't have understood ME, but he didn't want to understand what was wrong. Some guideline said six weeks and that was that, like it was law and set in stone. I had no idea what was wrong then, I just knew I still felt (and feel) ill.

It wasn't then and isn't now depression. I've always WANTED to do things. I have no wish to be and constantly struggle to be idle or even rest. But no, I've been accused of being depressed, lazy and even lying. I'm deeply, deeply, offended and angry about those false accusations and the knock on effect that these have had, meaning I've been denied help, treatment and even compassion as a result. 

In the 80s, articles about "Yuppie Flu" began appearing in the press. Ironically, it was their descriptions of the symptoms that made me realise what I had. On the other hand, I was not about to go to a doctor and get labelled with it. The harm of that labelling has already meant I had no alternative but to keep pushing, keep working, until I could only work and crash and eventually couldn't do my job and was let go - not once, but several times - until I was unemployable. 

I've never had a good relationship with a GP. Something must have been written on my records at some point that presumably says I'm difficult, or a malingerer, because more than once I've moved to a new area, registered with a new doctor, been to see them and had a helpful, positive first encounter ... then a week later, once my notes had caught up, was instead treated with utter contempt. Add the frequent harmful advice to exercise, or offers of yet more CBT! [1]

It meant more abuse from family who believed there was nothing wrong with me.

Nothing changes. It took me 35 years to get a diagnosis at all, such as it is. That was way back in 2008. Fifteen years later and I'm just 15 years older, quite a bit worse and the last form I filled in, I had a list of 14 conditions (not counting a laundry list of comorbidities masquerading as symptoms of the others.)

ME is acknowledged as variable: I can feel fine (my fine, not healthy fine) one day and not the next or even vary from hour to hour, minute to minute. What hasn't varied has been the steady downward decline over the years. At 16, my lack of energy was relative to how I was pre-illness. By 1995 - and around that time suffered another serious, unidentified, virus - I was unable to work and became mostly housebound - only managing to leave the house once or twice a month. Pandemic lockdowns were no problem when I'd already, effectively, been in lockdown for 25 years. Once upon a time, I could even sit in chairs!

All I can do now is to recline on the bed, supported and at a low angle and not for many hours, before needing to lie flat. I can't sit up. Sitting at the dining table is just no. Occasionally, I'll try to recline on the sofa for a couple of hours for a change of scenery. It'll take me 3 or more days to recover to baseline. Once in a while, I just have to go out and attempt enjoyment, or I will properly go mad. As I write I'm on day 8 of having to lie mostly flat to recover from an outing and from sitting up long enough to eat a wrap for lunch, while my back feels "broken" and where, if I try to raise myself up, I shake from exertion, feel nausea, my head almost explodes from the pain that hits it and I feel like I have a fever. 

There are no "daily living activities" that I can manage. I can't make myself meals, I can't take care of myself, or the house, or anything. I have a view from my room, but I can't get up to look at it, nor can I tolerate the level of light. One little chore, or repeated visits to the loo cause me chest pains and PEM.

There really is nowhere left to go with this, nothing to be gained from wishfully thinking that there may one day be a miracle. That's just toxic positivity: yet more denial, minimization, and invalidation. There's no point seeking any form of medical care, merely to experience more medical abuse and gaslighting. 

'Managing' this chronic illness, now means avoiding doing anything. Not from choice, but from necessity caused by a lack of research, treatment or care.

The hardest thing for me used to be asking for and accepting help and feeling that I was as entitled as anyone else to getting that help. Now there is no help available. I've asked. [2] Now, the worst is feeling there's no hope. At 66, even if adequate biomedical research were being done into Myalgic Encephalomyelitis (ME) (it isn't), there's no realistic hope that such research would be translated into effective treatments, available to the general public, in my lifetime. 

For me, all that's left is to let go of hope and stop fighting a battle I can't win.

[1] Having been offered (coerced into) CBT for ME (well, CFS) on many occasions by the NHS, as well as for just about every other ailment down to ingrowing toenails (sarcasm), I tried - I went along and wasted my precious energy - but never saw the point. So, I decided to do a course, from which I 'qualified' as a CBT therapist with distinction, a certificate and everything and, laughingly, am "thereby entitled to use the letters O.A. Dip. (Cognitive Behavioural Therapy)". I do feel qualified to say CBT is completely inappropriate for anyone with ME.

[2] One thing I was not prepared for is the 'lottery' of care provision. In Devon (from 2018 - it had taken all that time to get any help at all), I had carers daily who helped me with personal care; prepare simple meals, change beds, laundry and light housework: washing up, tidying, hoovering, dusting, accept grocery deliveries ... They'd even feed the cats. This was provided so I could conserve what little energy I did have for some sort of 'life' and to prevent exacerbating symptoms. This was all lost with the pandemic. Tried to reinstate some help after I moved last November and, locally, all they will provide help with is personal care (which is the least of my needs and I haven't taken it up, because I need help in the house, not someone 'up close' yet, because of COVID). They won't provide help with housework at all (the only way to get that is to pay a cleaner), nor with preparing food, just told me to get 'meals on wheels' delivered - impossible with all the dietary requirements and food intolerances that come with ME/CFS. Without such help, I'm therefore required to make myself more ill trying to cook and feed myself (and wash up, etc.), or make myself more ill eating food I cannot tolerate, or starve. This is a completely unacceptable situation.

Beware of Tickbox Tests with Myalgic Encephalomyelitis

Many years go, I took a Goldberg Depression Test and the score I got 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 mis-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 continue (the origin of this dogma is quite clearly down to saving money) to 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 (to me) has 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 such simple things that healthy people take for granted have huge 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? It's a necessary precaution to shift priorities in order to let go of doing too much, to facilitate pacing and reduce symptom exacerbation. Making ourselves believe that we no longer want to do those things that used to be important to us, is actually a mental self-preservation technique.
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 50 years and tell me you wouldn't feel 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 breakdown 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. 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.
12. I feel like a failure. I don't, but ditto the above. We aren't exactly encouraged to think being this ill, even when believed, is a success.
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 feel constantly unwell, I've been ill since 1973 and not yet had any treatment. It is 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, 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 50 years of this means that one is not really moved to happiness.
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 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. I would not fill it in. You must make your own decision.

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 cumulative 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 it may help [it does] 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.

Preparing to go on holiday with ME

The park I nearly saw on our last aborted outing.

Now, I'm trying very hard not to be one of those first world people who feels "entitled" to a holiday, but, by god, we NEED the respite and a change of scenery. For the last 18 months, except for the one week we "escaped" to Lincolnshire last year, I've only left home for an hour or so on four occasions and even those times have come with consequences. Even leaving the bedroom and going downstairs now leaves me with chest pain and exhaustion, so I rarely do that either.

This is no life, but preparing to go somewhere for a week has been fraught with enough difficulties that threaten to outweigh any potential benefits. 

We - well, by we, I mean I - do not feel that it is yet safe enough, certainly not with my laundry list of chronic illnesses, despite being double-vaxxed, to travel by any shared form of transport like train, or plane (and I don't have the energy to deal with all the bureaucracy of forms, tests, etc.), so a holiday in the UK, by car, to a self-contained accommodation (like we did last year) it shall be.

Even pre-COVID, every time I went to a public place like a hospital, an airport or on a plane, once just to a local shop where someone near me sneezed, I would catch a cold or flu and it would then hit me severely. (Once acquired Norovirus just from a visit to a hospital for pre-op screening.) 

Most times I would be so ill that I'd have to remain flat, in bed, for anything from 4 to 6 months to recover. And if that's just from a cold or flu, WTF is COVID likely to be like for me? So I refuse to risk finding out.

We just don't know what causes ME, but there is convincing evidence that in at least a subset of patients ME/CFS has an autoimmune etiology. I would describe my immune system as 'disrupted'. It seems it doesn't want to work at the gate, letting me catch anything that's going, easily, then overreacts, causing more severe and longer lasting symptoms. By the same token, we have no idea if this same anomaly will disrupt the effectiveness of the vaccines. Will I have antibodies, or too many that cause a storm? In the UK antibody tests are only available to NHS workers. My GP advised against a commercial one.

So, with no effective COVID protections in place now and mutations running riot, I have no intention of taking any risk whatsoever. I will be wearing a mask often and I won't be remaining inside anywhere at all where there are other humans. Some will say I'm being "anxious", but based on past experience and the way my body works, I feel this is justified. It's my life and nobody else will protect it.

Not knowing which way the wind would blow, we left it as late as we dared to book holiday accommodation. By then it was Hobson's Choice, in Ilfracombe.

Seriously, I specified the whole of England at Booking.com then whittled it down, eliminating any that didn't fit the rest of our criteria and ended up with just one available option. At least I haven't been to Ilfracombe before and there are places nearby that I have been to and am more than happy to visit again.

We did, however, decide well in advance on the dates, so we could get everything else organised. So way back in June, we booked the cattery for the cats' 'glamping holiday' while we would be away. The cattery, rightly (their licence depends on it) insist that the cats are vaccinated, so, at the same time, I also booked the cats vaccinations - which are due in Aug anyway - for the exactly right date. 

Then, just days before our appointment, our vet announced that they had people off with COVID and were cancelling non-urgent and regular appointments. At the same time, they posted that even the local emergency vet service had no capacity left as they also had people off with COVID. So there was no realistic expectation that an alternative vet would be able to do the vaccinations either. 

We then had five very anxious days, wondering, not knowing if ours would be among those cancelled - because no cat vaccines, no cattery: no cattery, no holiday - trying to not sound "entitled", but at the same time, trying to impress upon the vet how important this is for us and that our holiday depended on it. Among the list of things that travel insurance would likely cover, I don't suppose for one moment that "can't go because the cats didn't get vaccinations and the cattery (rightly) won't risk their licence without them", is on there.

Over those days I was frantically emailing backwards and forwards with every cat sitter I could find in the city - all of whom said either they don't cover our area, were fully booked because of the short notice, or didn't respond at all - to see if there would be an alternative for the cats that made the vaccines less vital.

The vaccinations were done in the end, but it was five days of mentally exhausting anxiety I didn't need. And they were only done the day before we had to either pay the final balance or cancel the holiday. It was way too stressful. That timetable, leading up to a holiday for someone with ME ... we'll it's threatening it nearly as much as the vaccinations themselves were.

Stress is exhausting. Stress for someone with myalgic encephalomyelitis is liable to cause a 'crash' or relapse, worsening of symptoms and post-exertional malaise (PEM). Just what I CAN'T risk happening just before a holiday and a car journey for which I need to rest in advance to be able to cope.

We've booked self-contained accommodation with a kitchen so we don't need to go too near humans for anything. As last year, I ordered groceries for the week and was able to have them delivered to where we were staying, but this year we'll have to take them with us and can't easily transport the fresh ingredients we'd normally eat and, my husband could do with a break from cooking. Last year, I spent days reading every last ingredient in every ready-prepared meal and came up with a list of items that I felt I could tolerate as a temporary measure. It wasn't a long list. This year, of course, those items weren't available and the delivery has arrived with items short, so we'll have to risk going into somewhere locally, and another lot of ingredients that my system may not tolerate.

We had tried to go out to an open air event in a local park in mid-August. We got there. We parked. I was walking across the grass on the way there and turned my ankle badly when I found a hidden rut in the grass (probably old pitch marking). So, with a holiday ahead, even though it was then still three weeks away, I didn't dare exacerbate it by walking any further or spending any more time out. So we gave up on that outing, came home, immediately applied cold compress. 

Day before the holiday and it still hurts like F*CK. I just don't heal.

We're not there yet. I NEED this holiday, but I'm also scared stiff. 

Most of these problems were avoidable: COVID difficulties would be a lot less if we didn't have idiots in charge and sheep following them and some proper protections in place. Brexit-induced food shortages ditto. And these additional difficulties are bad enough for healthy people, but are amplified exponentially for those of us who are chronically ill and vulnerable and means it is going to be a very long time yet before we can do anything 'normal'. /Rant

Excursion to Hamble

Southampton Water from Hamble Common Beach

Left the house yesterday for only the 2nd time this year, going to the beach at Hamble, because I'd never been to the east side of Southampton Water. Take my advice: stay on the west, unless all you want is a view of Fawley Refinery. 

The view from Hythe is much nicer. Well, from anywhere is nicer!

Double-checked my Google Timeline today and we'd travelled no more than 9 miles from home and were out for a total of 1¾ hours, four minutes of which were stopped at the car park. Therefore, I cannot have walked far. 

Today, I am in so much pain, most of the day I've been unable to function in any meaningful way. I didn't sleep well (partly because of next door's cat serenading for hours), but mostly because it was impossible to get to sleep while lying on either side because of the extreme pain, but I can't easily fall asleep on my back either. My neck and back are utterly screaming with pain, mostly from the jolting from the poor condition of the road surfaces - over just that short journey. 

My hips and knees are beyond painful from 'walking', not even 50 yards. 

Every muscle and joint hurts and I feel like I've been hit by a truck. I took Diclofenac earlier - which I only do in emergencies - and it merely dulled the pain slightly for about an hour, if that gives you an idea of the level of it.

This afternoon, I'm starting to get the sore throat and feverish headache that are the classic signs of the onset of Post-exertional malaise. Chances of being even at my usual baseline - no more than reclining in bed with visits to the loo being my only activity: I don't even go downstairs - for the next few days is doubtful.  

It's laughable really: If going 9 miles, being out for 1¾ hours and walking a few steps does this, what chance, other than becoming a vegetable (and I'm almost there already) do I ever have of staying within my “energy envelope”?

As I say, this is only the second time I've left the house this year. I can bear this level of lockdown - mine started way back in 1995 - better than most people, but it is not good for the mental health to be stuck in one place all the time, however, it's also really not easy to see the benefits of going out anywhere either if these are the consequences. I often hesitate to write about this, because I know it can sound like I'm just whining, but I'm starting to realise that I need to do so, because I need people to understand my reality and the reality of so many other isolated and neglected people with Myalgic encephalomyelitis (ME).

Covid Vaccination and ME/CFS

On Thursday last (25 Feb 2021), I got my first dose of the Covid vaccination. My age put me in Group 7. My local GP had refused to place me in Group 6, despite sending them information based on the template letters from the ME Association, however, in the end I didn't press them on that after they'd revealed that, "Your Husband is recorded as being your Carer and so he will receive a Covid vaccination when we visit you." 

They were doing home visits earlier for housebound patients: I have previously informed them that I am mostly housebound and would have needed wheelchair and PA assistance otherwise to get to any appointment. So far, so good.

Background: Among a veritable Smörgåsbord of invisible illnesses, I developed ME/CFS after having Glandular Fever in 1973. Thought everyone was as knackered as me - until, after a number of other illnesses and events - I became very unwell in 1995, was rushed to hospital and never got better, settling usually at Moderate to Severe, on average at 80% impaired, on this Myalgic Encephalomyelitis Disability Scale. These days, I spend at least 23 hours a day lying or reclining in bed. Even sitting up is too tiring and causes my symptoms to exacerbate. Mostly, only travel as far as the bathroom. Going downstairs is like an excursion!

Anyway, I got a phone call on Wednesday that I initially ignored as it came from a Private Number (NHS what do you think you need to hide?), but thankfully they left a message so I called back. They said they could come the next day. 

So I've decided to also share my experience, not to discourage anyone - on the contrary, NONE of us is safe, until ALL of us are safe - so you can be prepared. 

Nurse came about 10 am on Thursday morning and I didn't even feel the jab. She warned that my arm might be sore in the area and made a point of asking which arm I wanted it in. About an hour afterwards my whole left side felt like it had been in the freezer, which was weird, but not terribly unpleasant. It was fine once I put on a second hoodie and had my lunch. I felt a bit sicky, slightly spaced out (more than normal) and had a fleeting headache, but those were soon gone. I was warned that I might feel fatigued, but I wasn't sure I'd notice. 

Before I went to bed that night I took a cold and flu relief oral solution - it's the only way I can partially tolerate Paracetamol. It still completely constipated me for two days, which did nothing to help! But I did sleep (unusually).

Friday morning I woke up unsure whether I was alive or dead. OK, hurting: must be alive. With Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) I'm used to my body overreacting to medications, but this was extreme.

First thing on Friday morning I was so cold and my hands and feet were so cold it took 3 hours under extra covers, with two cats, two hoodies and with a heated blanket on full to even begin to warm up. Then I felt like I had a fever. 

I ache all over all the time, but this took it to the extreme like sports strains. My legs felt like they had polio and couldn't even get to the toilet without help.

And the migraine-type headache was so bad I couldn't even open my eyes to or lift my head off the pillow without feeling sick and dizzy. I couldn't even bear to watch moving pictures on TV. For 36+ hours all I could do was keep waking up to pee, drink more water, then drift back off to sleep again, rinse, repeat.

I've even had to lie flat after drinking plain water to prevent me bringing it back up again, because it made me retch, but I needed to drink because my pee was hot. Cleaning my teeth, the toothpaste made me retch. Can't even face tea. The only thing I was able to eat Friday was a bit of dry toast - I don't normally eat bread, but it was the only plain thing we had in the house that I felt I could stomach. A small, sugary treat just tasted sickly and made me nauseas and I immediately started to get a headache, like a sugar rush headache or hangover - not fun! I still can't eat and drink normal food and my stomach is in knots. 

Sunday morning had my first shower in days and had to lie down afterwards because it made me feel ill. The soreness from the jab in my arm is still off the scale and I can't lie on it even now. On Friday, I couldn't even use that arm.

Some of these are my normal symptoms of ME and the jab has just caused a huge crash. Everyone reacts differently, so hopefully none of this will apply to you, but at least you can be prepared so you can be as comfortable as possible. Gather things together in advance like extra blankets and bedsocks - apparently the cold thing is common, as are the aches and the sore arm - medication (if tolerated), bottles of water, plain foods you don't need to prepare ... 

A couple of day's roller coaster, compared to being dead from the virus? My hope is the reaction will be milder when I do this again in mid-May. (It was.)

PS: I'm still waiting for Bill Gates to get in touch and I haven't noticed any improvement in my mobile signal, so I think we can discount those. 😁 

International ME/CFS Awareness Day

Tiverton Town Hall lit up in blue for International May 12th Awareness Day

Testing for Orthostatic Intolerance

Way back in 2009, after I'd begun heart rate monitoring (my initial readings can be found here: Compared to the normal ranges for my age, I'm dead ... and recent monitoring has confirmed this to still be the case, in fact the readings were generally even lower), I followed it up by doing Dr. Bell’s Simple Test for Orthostatic Intolerance, which I'd first read about on Sue Jackson's post on Orthostatic Intolerance and CFS.

However, I never managed to write up the results, so here they are. As recommended, I began the test late morning, ~2 hours after breakfast. Before starting, I'd merely been to the loo and back, hardly an "unusual activity!"

Interval	SYS	DIA	Pulse	Observations
Outset	91	60	78	Normal after mild activity.
5 minutes lying flat	111	62	54	Typical resting figures.
10 minutes lying flat	92	63	51	Ditto.
5 minutes standing	?	?	?	Unable to stand still - swaying uncontrollably. After less than 2 minutes, twinges in ankles, feeling of swelling, assumed to be blood pooling. After 3 minutes began to get lightheaded and nauseous.
10 minutes standing	128	100	60	Shortly into round 2, began to get a headache, nausea becoming worse, extremely hot, sweating, trembling.
15 minutes standing	109	74	80	Other symptoms continue to build, plus lower back pain started, legs ache, urge to march on spot. Feet appear red and mottled.
20 minutes standing	97	60	73	Pain in ankles, shins and calves worse again, pain in hip close to unbearable, nausea and trembling both up another notch. Trying to control thinking in increasing brain fog becoming difficult. Dry mouth.
25 minutes standing	110	62	72	All symptoms still increasing, but ability to articulate ceased.
30 minutes standing	99	74	85	Ditto.

If we go by the numbers, then I think the results of this test are inconclusive.

Certainly the trend in my pulse rate appears to coincide with what would be expected in a patient with orthostatic intolerance and the final pulse reading of 85 is still more than the tolerable 28-30 rise from the resting pulse of 51.

Although there is nothing in the real danger zone, it's not difficult to see that, once I begin activity and not just standing on the spot, however cautiously, I am bound to go into the "exhaustion zone." Even if I keep within my limits while doing light activity at home, the moment I need to exert myself by having a shower, or walking, I just get caught in the vicious cycle of 'push and crash'.

The blood pressure readings are all within what look to me to be the tolerable side of low. What I don't understand is why they went up and down erratically and at times up, when the expected result would be down. My hunch, based on how I felt, is that my blood pressure rose in direct relation to the onset or notable increases in symptoms of pain, hot flushes and overall discomfort.

Frankly, I was more than surprised that I managed to get through the 30 minutes of the standing test without becoming so lightheaded as to be unable to remain upright, because this has happened before, inside a minute. That said, I know I was only able to push beyond what I'd normally be able to tolerate, mostly because I was doing nothing else that day and was in the relative comfort and safety of my bedroom, i.e. I knew I could lie down if it got too much and that I could - and did - lie down for most of the rest of the day to recover.

If I'd attempted to stand for a few minutes, say in a work environment, I wouldn't have been able to do anything else while doing so, nor for the rest of the day. Even if I'd only been out shopping, I'd have found the symptoms intolerable and would have needed help, or to sit down (as I have on many a shop's floor).

As soon as I finished the test, I did have to lie down and continued to have a headache and nausea, while the trembling, which is my usual response to any over-exertion, was still continuing to increase even several hours later.

The next time I got up to go to the kitchen, after a short rest, I felt achy, battered and bruised and, as soon as I was upright, the nausea and trembling increased again. The second time I stirred, although I didn't lose consciousness, I couldn't focus, nor keep my balance and was bumping into walls.

Later in the day, as often occurs after exertion, I suffered a nose bleed.

The pain in my back, hip and legs, lasted the next few days. Nine years on, my symptoms come on quicker than they did in 2009. My tolerance for standing has decreased and rather than push myself into flares of symptoms that would put me in bed for a week or longer, I now have help to do all of the things I struggle with, including wheelchair assistance whenever I'd need to stand or queue.

The devil in the details

A comment in an exchange on a ME forum on Facebook attracted my interest. They said:

"My biggest issue is finding caregivers who really understand how important it is to be detail oriented to save me energy, like making sure to put things away in the right place so I don't waste energy having to search for it. But I have found a really good caregiver and she really does understand. She has two other clients, who are both paraplegic and she says if she had to choose, she would rather have their disability than mine, because their quality of life is so much better."

Sadly, most of us with ME will identify with the quality of life issue. 

It has often struck me (and this is a bit of an elephant in the room, because it could seem very insensitive to say so), but that "merely" having a physical disability, whilst otherwise feeling quite well, is bound to result in a better quality of life than for those of us who have to deal with a long list of physical and neurological limitations, mobility issues and chronic pain, as well as feeling incredibly unwell, day-in-day-out, but that is so often not considered.

On a practical level though, the rest of the comment is excellent food for thought. There's really not much can be done about whole days lost looking for the item you put in the daftest place yourself, because of brain fog (did that one yesterday), but clearly a lot to be gained from organisation; having a system and a place for everything. That goes hand-in-hand with pacing. 

And having had carers, I can confirm that with up to three visits per day, from the same number of different carers, then the most frustrating thing is all the time and energy one spends trying to find the things that they have all put back in different places every time. There were times when both I and my husband were on the brink of saying that this one thing cancelled out any of the benefits.

Frequently, I feel that my list making and organising gets to obsession level: that someone who can scarcely manage to get out of bed, let alone out of the house (rarely for ever shorter periods) really shouldn't need organisation at the level applicable to large and complicated projects, but I seem to. It helps me to remember things, get something done in small, manageable amounts.

Even my (supportive and understanding) husband doesn't always get why it's vital for me to keep on top of things and why I persist in trying to manage to do so, when even I know that I really need to rest and NOW. So, yes, I can also see why it is going to be difficult to get caregivers to fully grasp this need. 

But not doing things and the consequences thereof of chaos, mess and clutter (those being relative terms) are, in fact, much worse than continuing to try to keep things under control, even at a cost to current energy and the resultant post-exertional malaise. The later cost of catching up, along with additional stress of the interim nagging anxiety, would add up to so much more. I'd like it not to cost at all, but I haven't found the solution to that conundrum yet.

The natural progression from having everything in the right place so you don't have to search for it, which I discovered by bitter experience yesterday when searching for that misplaced item, is not having too much clutter through which to search. Dealing with clutter not only creates physical challenges, but it really bothers me mentally and I can now see why it will be critically important for my health, in both ways, to get this dealt with. Decluttering has to be one of my next projects to organise. Probably in painstaking, obsessive detail. <Evil grin> 

What is 'disabled enough' for some people?

What is it that makes some people think that they're entitled to their ill-informed opinions, which, when voiced, are clearly a cause of abuse and harm? This is something that happened to me, when another attendee at a yoga class - I would mention this was a gentle yoga class aimed at old folk and those of us with chronic conditions - saw that I'd parked in a nearby disabled space. She told me - in that haughty tone that people like her use - that I was 'not disabled enough'. When I told her I have a Blue Badge, she more or less accused me of fraud.

(Let's not even mention the "Have you tried yoga?" brigade. They can STFU! Isn't it enough I was pushing myself to try this in the first place? Shouldn't have.)

Anyway, knowing she would be likely to gossip to others in the group and slander me, I decided to write an open letter and hopefully nip it in the bud. At least make it clear to her that I was not about to let it go. This is what I wrote: 

You probably won’t realise just how upsetting your words were last week, but I was so upset I was unable to formulate a proper response at the time and instead went home flattened and emotionally spent. What I want you to know is that it’s precisely because I have a Blue Badge - and because my husband is able to provide me with a car - that I seem to be able to do things. It is only because I have these things that I now have some independence. I’m still only able to do something for a couple of hours on one or two days a week.

You certainly have seen on various occasions when I have had to sit out during yoga because I’m feeling too dizzy or unwell to continue. 

The whole point of coming to yoga is to try to help some of my symptoms and it is imperative that I am able do this in a friendly, non-judgemental environment. 

But you don’t see me for the other 166+ hours per week, most of which I have to spend either in bed or reclining on the sofa because I am too ill or exhausted to do anything else. 

This is profound, unrelenting, medical fatigue and weakness - not just feeling a bit tired - that means I may appear able to do things, but even when I can do them, I can usually only do them once before being exhausted. You can’t see that even the minor effort of walking a few yards causes me to feel exhausted, sick and dizzy. You can’t see my symptoms, but that does not mean they are not there or that I’m entirely able and not in need of help. In fact, it takes countless aids and adaptions for me to be able to have anything vaguely approaching a normal life – which is the whole point of these assistance aids.

You also weren’t there when I was diagnosed by GPs, rheumatologist, the pain clinic, the ME Clinic, or with those who carried out the assessments for my benefits and Blue Badge … 

You haven’t had to live with my chronic illnesses – and learned that pacing to avoid doing too much so I don’t exacerbate my symptoms is the only “treatment” available – for 41 years, since I was 16.  

Some days, I can’t do anything at all. Nobody sees me on those days.

So when you suggest that I am ‘not disabled enough’ to have a Blue Badge, or that the system is wrong for me to be able to get one, please consider these facts, along with the knowledge that I’ve crawled my way up from previously being constantly bed-bound to being able to do what I can today, precisely because I have help like a Blue Badge, but I could easily find myself back in that position if I did not. 

Maybe that would be disabled enough for you? 

(NB: I've since deteriorated, no longer drive and don't go out alone.)

Analysis of an ME symptom diary

“I never travel without my diary. One should always have something sensational to read in the train.” ― Oscar Wilde

This 2011 symptom diary definitely doesn't qualify as sensational and even bores me. It was never intended for publication in the first place, but it has been a very useful process to type it up and analyse in retrospect. That process has allowed me to identify trends, like what activities cause what symptom or payback, which is enabling me to plan what to avoid to keep symptoms bearable. 

Reading it back it's just a tedious and repetitive round of constipation followed by IBS; activity, followed by excruciating pain, lack of sleep and worsening post-exertional malaise (PEM). But, boring as it is, I'm sharing my experience in case it can be of use, from the process, or something that perhaps resonates. 

It sounds so easy to say avoid such boom and bust cycles and learn pacing. Quite another to achieve that in reality when, often, too much activity (that will cause unforeseen symptoms) is merely getting to the bathroom and back. It took many years and writing all this down and reading it back for the penny to fully drop for me, so I do understand why it's hard for anyone not actually experiencing it to grasp, but I do think a few more could at least try to have some empathy.

The biggest conundrum is if I wake up just tired, but only feel averagely crap. But this is the worst time, because when you finally get it right and reduce your stressors to the required level to not provoke unbearable symptoms, 'imposter syndrome' clicks in (undoubtedly worse due to medical gaslighting), we begin to think maybe we aren't that ill after all, then overdo it and go right back to the start all over again. Going through this process means I do that less now.

Anyway, here's what I've learned from analysing my 2011 Symptom Diary:

• My sleep pattern has it's own mind. Doctors and other health professionals bleat on about sleep hygiene like it's some universal panacea. It. Does. Not. Work. (There isn't really any evidence that it works either.) In my case, I sleep better with some low light and some noise (TV, white noise ...) and can't stand dark and quiet - I mean, to the point that it is mentally disturbing and nightmare inducing. And sometimes even that doesn't work. The only thing I can somewhat control, is to make sure that I don't do things on days where I haven't had enough sleep and am thus wired, strung out and already knackered. Easier said than done, because, in practice, that means avoiding making any plans. And pleasurable, non-essential ones are the first to go. During 2011, I had far too many medical and counselling appointments that, in retrospect, were often of little value, but which caused massive amounts of post-exertional malaise (PEM), with severity in inverse proportion to the amount of sleep. So, I guess the take-away here is to learn to say NO. Even to doctors and especially to other 'well-meaning' people. Accept and trust your body on this.
• Outings cause pain that prevents me sleeping as the pain in my legs often keeps me awake all night. Well, any activity causes pain and overactivation, which then causes lack of sleep, which causes the pattern to repeat. Walking any distance provokes this, yet I persevered for years because a) I had no alternative means of transport and b) under the misapprehension, based on 'expert' opinion that it would do me good. It certainly did not. All it did was keep reducing my baseline and what I could achieve, from which I have never recovered.
• Low light may be good. Light early mornings on the other hand are dreadful. Maybe this intolerance is more pronounced for me because I spent 16 years closer to the equator, in Tenerife, where there is a lot less difference in the length of day between summer and winter, but these seasonal swings in the UK are something I cannot seem to adapt to and which increase my lack of sleep in summer, which increases my symptoms and reduces my baseline. Even more.
• Any effort causes exhaustion symptoms such as breathlessness, shaking and feeling uncontrollably sick at the time and later post-exertional malaise (PEM) symptoms, which are flu-like with sore throat, swollen glands, feverishness, headache ... The only fluctuation is the amount of said effort that will cause this reaction cycle to start. Predicting or noticing what that point is, is the hard part, because it's a full-time job that requires attention, awareness and concentration that are, in themselves, activities that can cause exhaustion and payback. 
• Travelling to anywhere is exhausting, but not all methods of transportation are equal. It's not necessarily logical, but walking is not always the worst - or most exhausting - means if an alternative, like the bus, would involve lots of waiting and standing around that causes worse symptoms and greater excruciating pain. Buses, I've found, are impossible anyway because of the jolting. Trains are only acceptable if a seat is guaranteed. Car journeys are intolerable if they're too long, require me sit too upright or over poor road surfaces. 
• My system gives me no warning of IBS-like attacks, however, by analysing the diary, I can see that the majority of them tend to follow episodes of constipation. It isn't stress that's causing it, it's mostly medication, especially pain relief, or changes to my diet that are the worst culprits. Oh and THE WORST thing: Buscopan - prescribed by the GP for IBS. Irony at it's most surreal. Let me make the distinction here: I'm calling these 'IBS-like attacks' because there is overlap and they are just like IBS symptoms. GPs have diagnosed me with IBS twice, probably wrongly. What I think is the case is that these are gastric symptoms due to myalgic encephalomyelitis. That also means that a drug like Buscopan that is designed to stop the sort of stomach cramps that you'd get if you had, say, a stress-induced tendency to IBS, will, in someone with an already exhausted system - and this is my experience with it - simply cause the bowel to become virtually paralysed and unable to function. Then it 'backs up' causes constipation, even more headaches, nausea, until it 'explodes' again. The only things I can do to avoid this boom and bust cycle is to absolutely never take pain relief, not even a Paracetamol, never take Buscopan, avoid binding foods like eggs and never deviate from a roughage-heavy diet.
• Of course, 'absolutely never taking pain relief', means the only method I have left for avoiding pain is to avoid all those activities or environments that would provoke or increase pain. 
• Ah 2011 was also the year I learned that I cannot tolerate a dental anaesthetic, which contained adrenaline. The hard way. Since then I have insisted a warning goes on the top of my notes. If a new dentist did not want to understand this, I left and changed dentist. 
• A HUGE reason for keeping the diary in 2011 was because of the abuse and bullying I was receiving from my mother and certain people she had manipulated into continuing this for her. Being threatened with violence, verbally attacked and slandered were among the reasons I sought support and counselling, because I'd been pushed to the point of breakdown. She died in 2011, which, for me, began a process of recovery, from that at least. Every cloud, as they say.

ME Symptom Diary: November 2011

Monday, 7 Nov 2011

Yet another explosive attack of IBS this morning. What began, as ever, as a seemingly normal 'bathroom visit' – there is never any prior warning or indication – became a lengthy marathon with contractions/spasms and pain increasing in intensity until it made me cry out, involuntarily. By that point I was in so much pain I was feeling faint and thought I would pass out and fall off the loo! That’s not to mention the smell and the mess – you are so lucky there’s no ‘smellyvision’ – which make it impossible to even contemplate getting ‘caught short’ with this in a public or work place. The ordeal left me feeling weak and unwell and required me to lie flat for much of the day, until I had to go out, to keep a counselling appointment, in the afternoon – I'd rather have not gone out.

Tuesday, 8 Nov 2011

Yesterday’s outing took it out of me on top of the IBS attack, so much of today I had to rest. Was collected and taken out to a local group this evening and watched an interesting and informative film, but a couple of hours in an upright chair left my legs, back and neck in very severe pain that, later, prevented me from getting comfortable in bed and getting to sleep. When I did sleep, I woke up again early. Allodynia pain has flared up so much, making it too painful to put my feet in direct contact with the bed sheets. Yet again, this is too high a price to pay. 

Wednesday, 9 Nov 2011

Still felt unwell and tired. Woke stiff, but in less pain than I expected. Was not able to do much physically, but did finish writing some letters that have been waiting – for a day when I had the energy and cognitive capabilities - since September and took those and a couple of parcels to the Post Office. Phoned ‘former family friend’ – to not name this person – to cancel their intended (their intention) visit, which he turned into an argument. It’s clear he is not about to let facts get in the way of his ill-informed opinions (those only based on my mother’s lies). As the call was ended abruptly, I will need to defend myself in writing, but otherwise, want no contact with this person. It was a most unpleasant exchange, but I feel more sure of myself and thus less upset by his verbal attack.

Thursday, 10 Nov 2011

Difficulty waking up this morning, even though I slept reasonably for a change, which, under the circumstances, was a surprise – or, maybe not, now that I’m certain I won’t be dealing with certain bullies again. But I’m tired, strung out and nauseas. Having to push myself to eat. Neck pain and stiffness, with that grinding, crunching of bones sound, is particularly bad today. Felt sick, shaky and feverish after eating breakfast and had to lie down. Migraine headache building.

(Once more, too unwell to continue symptom diary on a regular basis.)

Thursday, 24 Nov 2011

Only slept about 4 hours last night, so woke up very tired and strung out. Received some post and deliveries, but was unable to move anything and just left all the items where they were (often do this with shopping). By mid-afternoon, I simply could not do anything, other than lie down, dozing. Yet another nose bleed.

Friday, 25 Nov 2011

Woke up in pain. My bones feel like they’ve been replaced with freezer ice as they're burning (like an Ice Burn) and my muscles are achy, taught and powerless. If I didn’t know better, I’d think I had polio. (Myalgic encephalomyelitis was called atypical polio - or polio by another name. Not surprised.) For some time this morning I really couldn’t make my limbs move, despite being desperate for the loo. Sore throat and very swollen glands. Knees feel swollen. All joints are clicking painfully. Food and coffee made me feel sick. Walking to the loo made me exhausted and shake from the exertion. Feverish headache and light is painful to my eyes. Legs and back are too painful even to allow me to sit. No choice but to lie down, even though I need (and want) to be doing things in the house. 

Saturday, 26 Nov 2011

Woke up with severe headache and nausea. Eating breakfast only made the latter worse. Catarrh, sore throat, and an ‘itch’ in my ears (like with an infection). Feel like I’m getting flu, although likely this is Post-exertional malaise (PEM).

Monday, 28 Nov 2011

Woke with a sore throat and a banging, feverish headache again. Joints very sore. 

(These are the last entries in the diary.)

Mushroom Hunting Expedition

Not the mushrooms I hunted.

What you should be seeing here are a few photos from the mushroom hunting (or fungi forage) expedition I went on last Saturday, 24 Sep 2011, in the New Forest. It’s was a fantastic morning out with some lovely company and a knowledgeable and entertaining guide. It was brilliant to get out into nature again – I realised just how much my soul needs to commune with its tranquillity. However, it’s taken me until now to find the energy to write these few words. 

Despite being chauffeured and despite finding myself places to sit down while the rest of the group went off foraging, a mere 3-hour outing caused me an 5 day total crash. At least I slept, more like a coma really, because I couldn’t have woken up or functioned, even if my life had depended on it and, of course, I suffered all the usual post-exertional malaise feverish, flu-like symptoms, with, this time, the added bonus of reawakened allergies and a bevvy of bites.

There were plenty of opportunities to rest while folk were foraging. I’d wanted to go because I thought it sounded more interesting than merely going on a walk, but I realised afterwards that there was no way I could have kept up the pace or coped if it had been a walk. But silly me, I forgot how *tasty* I am to the world’s bug population. Somehow, I could remember to take precautions against the mosquitos in Tenerife, but totally forgot that actually, the last time I was bitten really badly (allergic reaction, massive swelling and in need of urgent medical attention), was some 20 or so years ago … wait for it … in the New Forest!

 
So, without repellent some now fat little beastie first had several nibbles on my neck, proceeded across my shoulder and then the saucy little sucker managed to bite my boobs (in several places) and work herself down my torso and legs, supping at regular intervals. Well, unless there were several of them. 

And no matter what I take or apply, I still can’t calm the incessant itching.

 
Ah the photos? I lost them, accidentally deleted somehow. But chiefly, they were of mushrooms! Some orange ones that looked like fallen Autumn leaves. Don’t ask me what kind. If there’s one lesson I learned it was to leave the identification to the experts. Some were very pretty, RED ones - DANGER - those are the ones you absolutely don’t want, even if they do look super-cute. And trees. Forests tend to have quite a lot of those. There was bracken beginning to turn an autumnal brown. And a nice little mushroom crop of mostly Hedgehog Mushrooms and Chanterelles that I brought home and which ended up on a risotto.

ME Symptom Diary: August 2011

Monday, 1 Aug 2011

‘Effin crap again. Still got flu-like symptoms and inflammation that is notable in my hands and knees. Pain levels are mega with shooting pains and spasms, especially in my thighs. Decided not to take pain killers (Celebrex/Celecoxib) this week as they barely touch the pain anyway, but are almost certainly contributing to an extreme level of constipation, which is itself crippling.

Tuesday, 2 Aug 2011

Overall feeling of inflammation, which is hands is very apparent. Neck ache, back ache, feel sick and exhausted just from making breakfast. Spending the day resting after counselling yesterday.

Wednesday, 3 Aug 2011

Utterly crap, without the crap. Severely constipated again, which is (literally) a severe pain in the rectum. Was overcome with severe sweating and nausea, when I simply tried to go to the loo. Thought I was going to pass out or throw up. Had to crawl back to bed to lie down. My back hurts and I feel very unwell.

Thursday, 4 Aug 2011

Snuffly this morning and have increased nausea again. Took another laxative last night and STILL no result. Hip and back pain is getting really bad.

Friday, 5 Aug 2011

Eleven hours sleep, relatively low pain levels (due to warm, dry weather) and finally went to the loo! It took a 3rd dose of laxatives and wasn’t really worth celebrating, but this is just one example of what happens with medications – for me anyway and perhaps for many people with myalgic encephalomyelitis (ME) – that we get all the side-effects (for example, pain meds causing constipation) and none of the effects: doesn’t kill pain – indeed, if you add the severe back ache, constipation headache and overall aches from feeling ‘poisoned’ as a result, all pain meds do is increase pain levels, exponentially. Seems incredibly ‘arse backwards’ to me (hence, gave up on them in the end). Still have the headache and now have the shakes from exertion, but it is a mild improvement.

Saturday, 6 Aug 2011

Severe headache, horrible cramps and pain around my butt end, severe backache and crippling nausea. Getting worried that my bowel may be obstructed. Severe pain in lower abdomen. Hip, neck and knee pain increasing again.

Sunday, 7 Aug 2011

Yay, finally! OK, I'll spare you the details. At least the obstruction cleared itself. Now headache has reduced. Neck pain still needs support and still light-headed and dizzy on standing.

Monday, 15 Aug 2011

(Yes, there is a gap for week commencing 8 Aug 2011, as I was just too ill.)

Had to do some shopping today because mother couldn’t go out, because of dizziness. OK, but I’ve been suffering dizziness, pretty much constantly, since 1973, but as usual, she chooses to ignore and invalidate my symptoms. The walking and carrying was just too much for me. When I got home I had to lie flat as I was overwhelmed by with nausea, dizziness, light-headedness, shaking from the exertion, and fatigue. New canvas shoes caused several blisters on my over-sensitive feet within yards, so I had to buy alternative shoes – in a charity shop – in order to be able to get home. This degree of sensitivity is excessive. 

Tuesday, 16 Aug 2011

Despite still feeling very nauseas and dizzy, took the train – could not have coped with the longer, more uncomfortable bus journey – and had to get taxis to and from the stations to keep another therapy appointment. Didn’t think I was going to make it home as I felt so sick and unwell.

Wednesday, 17 Aug 2011

Still feel very unwell with overwhelming nausea and dizziness. Cannot stand or even sit up without the symptoms becoming much worse. Today my stomach is considerably upset and mother was admitted to hospital and given IV antibiotics - for the same symptoms I have – which I later queried with them. Had phoned GP, who have seen many patients with the same symptoms recently and say that this is VIRUS* that’s going around. Was advised to rest and drink plenty of fluids. Duty doctor was going to call me in the morning for an update. Too ill to stand and prepare any food. Needed help, but, of course, none was available.

(*Antibiotics are no use with a VIRUS. The hospital was wrong and, on top of the chemo – that my mother denied she was having – proved fatal.)

Thursday, 18 Aug 2011

Thought I felt a bit better this morning, but I thought wrong. Dizziness and light-headedness is so extreme that I’m literally bouncing off the walls as I’m unable to walk or keep my balance. Nausea returned and now I have a feverish, gripping and randomly stabbing headache. This, in addition to the terrible stomach ache and upset stomach that left me feeling sick, weak and even more light-headed again. Had spoken to the GP this morning, who said rest as much as possible, but that they would need to see me if the symptoms returned – which they have, but I’m much too ill to manage to get to the surgery! Also advised to have as little contact as possible with my mother – not a problem, as I'm too ill to go out and have no means to get to the hospital anyway – to avoid reinfection. 

This virus also left me too unwell to continue with the diary.

ME Symptom Diary: July 2011

Float before the Bourne Free Parade 2011

Friday, 1 Jul 2011

Usual post-outing problems with pain in legs and feet; back hurts badly, I feel feverish, have a sore throat and a severe headache with nausea. In addition, I feel too weak – as well as it being too painful – to sit up, so once more I have to spend the day lying down or at least reclining on the bed with my legs raised. Arms and wrists hurt too. I can just browse and look at pictures, but I cannot concentrate to read, type or do anything actually productive.

Saturday, 2 Jul 2011

Woke up with a bad headache, painful creaking in my neck and my legs are still suffering from Thursday’s outing. Exhausted. Neck pain and stiffness is resisting meds and I feel like I have a hangover (not a drop of alcohol has passed my lips since forever). Getting up to make food, I felt dizzy, sick and light-headed. The pain and stiffness in my neck is now referring down into my left shoulder, making my left arm weak and giving me pins and needles in my arm and hand (this is not the first time, this arm was affected like this for several months once in the past). Couldn’t do anything constructive today either.

Sunday, 3 Jul 2011

Neck has become really painful and uncomfortable again. Hip and leg pain with the burning feeling right down to the bone, has come back. I was exhausted just from making and eating breakfast.

Monday, 4 Jul 2011

Every exertion – however minor, even going to the loo – is making me feel sick and causing me to shake. Each time I stand, I feel faint and overcome with nausea and have to lie down. Neck is grinding painfully.

Tuesday, 5 Jul 2011

Woke up in the early hours with an exhausting and excruciating pain right in the centre of my chest. Couldn’t move. Could feel palpitations that continued, along with some pain and discomfort for most of the day. The fatigue was really crippling. Felt really ill. Had the familiar pain in my lower back (left kidney area) that has always accompanied symptom flares since the time I was rushed to hospital with this pain back in 1995, in Tenerife. The back pain persisted even when I lay down and was acute enough to be completely distracting and make me feel sick. Was so exhausted just from making breakfast that I could not even sit up afterwards. Rested until I had to go out to a dental appointment in the afternoon. Would have preferred not to go out at all while suffering this level of symptoms and, in hindsight, I should have cancelled because the dentist had to stop treatment as I was so unwell and also because the anaesthetic did not take.

Wednesday, 6 Jul 2011

Slept, exhausted, as soon as I got home from the dentist yesterday, but I was awake all night with the pain in my legs from the outing – even though I’d taken taxis at both ends to and from the station because I was so unwell. Now utterly shattered and strung out with all my symptoms flaring.

Thursday, 7 Jul 2011

Couldn’t sleep again all night last night. Assume this is a reaction to the dental anaesthetic, which had contained adrenaline. Dentist had asked me if I’d ever had a reaction to it. I can now say yes. It’s like coke or speed on steroids! Brain is racing and I have a severe headache, which seems to be a likely side-effect. Something else I will need to avoid in future. Also have bad back ache again. Had a counselling session in the afternoon and my mind raced through this and I had trouble focussing or making any sense, so again, in retrospect, I probably should have cancelled.

Friday, 8 Jul 2011

Stiff and in lots of pain after outing yesterday. Should not have attempted walking home, but cannot afford taxis for everything. Also because a thunderstorm has been forecast and the weather has become humid and oppressive again, which always elevates pain levels. However, I slept last night, which was an improvement. Still too ill to do anything except lie down and rest.

Saturday, 9 Jul 2011

Day of the Bourne Free Parade and my first opportunity to do something for mere pleasure in forever. Of course I’m not really up to it, but I was given a seat on a float, so at least I didn’t have to walk. Even so, I was still exhausted after the hour and had to come straight home. Was back by 3pm and fell asleep. Could barely move later to get food. Needed help.

Sunday, 10 Jul 2011

Everything hurts and I am exhausted. It’s a VERY high price to pay just for one hour of enjoyment yesterday. Was not even able to get comfortable lying down. 

Monday, 11 Jul 2011

Everything still hurts and it is going to take a long time to shake this level of exhaustion. A very painful IBS attack, with full body spasms, left me with dreadful stomach ache. Pain during the attack was so bad it caused me to cry out. Waves of pain washed over me, making me feel hot, sick and quite faint. Actually, felt as if I might pass out and fall off the loo. Had to hold onto the walls. Still felt very unwell, weak and tired, even after taking a nap.

Tuesday, 12 Jul 2011

Knackered. Neck hurts, shoulders hurt. Left shoulder feels swollen and stiff. Back is in agony. Hips hurt. Legs feel half-dead with pins & needles, knees are very sore and I feel sick. Nevertheless, had to drag myself out to an appointment for Myofascial Release (MFR).

Wednesday, 13 Jul 2011

This time I feel bruised everywhere after the Myofascial Release (MFR) yesterday and, sadly, it has had no positive results. Just did too much, with the journey, when I was already feeling ill. Neck and back hurt badly today, as does hip.

Thursday, 14 Jul 2011

Hip pain is flaring with a vengeance today, which is affecting everything else and making me miserable. Just can’t function – or even think – at all today. Had another very painful IBS attack in the morning, which added to and exacerbated all the other symptoms. Walked to an appointment in town in the afternoon and arrived sweating and unwell. Felt sick on the way and thought I would not make it and would pass out. Was unable to sit comfortably because of the pain. Others witnessed this can could see how bad my symptoms were.

Friday, 15 Jul 2011

Headache; neck, back, hips, arms, hands, knees, legs and feet all in severe pain after outing yesterday. Sore throat and all the usual post-exertional feverishness. Can’t stand – don’t have the energy and am light-headed and unsteady as soon as I try. Feel overwhelmingly sick.

Saturday, 16 Jul 2011

Neck, back and shoulders particularly painful today. Spasms in legs. Stomach ache and headache. Still feel feverish with flu-like symptoms. Feel incredibly unwell. Spent day resting.

Sunday, 17 Jul 2011

Woke up with pain in neck and shoulders, hips, legs, knees and particularly bad I lower back. Utterly fatigued and only able to recline with support.

Monday, 18 July 2011

Crap - in the literal sense - with yet another flare up on the dreaded IBS. Unbelievable pain, whole body spasms and unending “emission” over more than half an hour that left me feeling weak and unwell again. Hip nagging with pain again, so bad that I cannot sit comfortably, even reclining in bed.

Tuesday, 19 Jul 2011

So fatigued today - and I’m sure that yesterday’s IBS attack has had much today with today’s overall symptom increase – that I cannot even recline at any angle and need to lie flat. Feel too weak, feel sick and feel like I will keel over. Not that I can ever sit up, but this is definitely worse than the usual disequilibrium. Feel like a huge weight is pushing me down against the bed and I have no power in any of my muscles. Arms too tired to type. Neck and back hurt.

Wednesday, 20 Jul 2011

Appointment with the Pain Service today, all the way over in Poole, Dorset. Made it clear that none of the distraction techniques they had previously touted do anything whatsoever for my pain. And we agreed that ‘their time would be better spent with others they can help’. Well, obviously, what I really meant was that they’re basically a f*cking waste of my time and energy, but surprisingly, I managed not to say that in those exact words. Besides, the trips to Poole are far too much for me. The irony is clearly lost on them, but the fact of getting to a Pain Service causing pain, just makes it stupid. [Later, when they offered me a place on a course for managing Fibromyalgia – that would have involved daily journeys (way beyond my energy capabilities) and sitting all day, over several days/weeks in a chair (impossible, and I don’t even sit in chairs, at rest, at home), I did spell it out to them very clearly that what they proposed was not suitable for anyone with fibromyalgia, certainly less so for anyone with ME and would amount to deliberate harm and torture. And I told them where to stick it.]

Thursday, 21 Jul 2011

Not enough sleep last night as kept awake by the severe pain, especially in my legs, resulting from the outing to the Pain Service (you see they irony) yesterday. Have a headache and back ache as well as the usual post-exertion flu-like symptoms. Have to lie down and functioning option is not available again. Going out to counselling appointment in the afternoon had a particularly severe physical effect because I started out at such a low level of functioning.

Friday, 22 Jul 2011

Headache. Hips and knees hurt from walking yesterday, but at least I slept for a change – about 14 hours. But I had to go out yet again, this time to the dentist.

Saturday, 23 Jul 2011

Hips and knees hurt after outing yesterday, despite not taking taxis both to and from the station to reduce the exertion. However, my mouth is very sore. This was the treatment that had to be curtailed last time because I was too unwell, so this time I had no choice. My back hurts, and I have extreme fatigue – could hardly stand half way through making breakfast. Rest of day in bed.

Sunday, 24 Jul 2011

Knackered again. Woke up at 2:45am and didn’t sleep again until after 6am. Legs hurt. Headache from lack of sleep and from teeth. Neck pain is particularly bad. Rest of day reclined, supported.

Monday, 25 Jul 2011

Woke up about 4am with a coughing fit and couldn’t get back to sleep again. Excruciating pain in hip. Flu-like symptoms, feverish and snuffly. Exhausted and achy.

Tuesday, 26 Jul 2011

Generally crap with sore throat, headache from constipation and feverishness. Neck hurts, knees and lower legs throbbing with pain even when lying down. Severe nausea. Day written off.

Wednesday, 27 Jul 2011

Sore throat, sneezing, feel like I’m going down with flu. Hands and legs in pain. Had weird dreams last night (more weird than usual) and not great sleep.

Thursday, 28 Jul 2011

Finally went to the loo! Hope this relieves the headache and back ache. Hands and legs hurt. Exhausted.

Friday, 29 Jul 2011

Did I really sleep last night? Feels like I haven’t slept at all. Can’t stop yawning. Feel heavy and weak. Neck, hip, knees and feet hurt after outing for counselling appointment yesterday afternoon. Tried to have an outing to Christchurch, but this proved disastrous and I have to conclude that travel, particularly by bus, is really beyond my abilities. Could hardly walk at all. Had to lie down.

Saturday, 30 Jul 2011

Eventually got to sleep last night, but pain in my hip and down my right leg is off the scale this morning. The skin on my toe joint is still numb, but excruciatingly painful at the same time. Neck and back hurt even more than usual. Flu-like post-exertional malaise symptoms. Took a flu powder and slept all afternoon, as well as all night.

Sunday, 31 Jul 2011

Worse this morning. Prescription meds (Celebrex/Celecoxib) just not having any effect on pain. Pain in neck, back, hip, knees, legs and feet all agony. Hands and wrists swollen, painful and too weak to lift a cup. Have a cough that will not stop.