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 year's diary definitely doesn't qualify as sensational! And it was only ever meant to be a symptom diary anyway, never intended for publication, but it has been a very useful process to type it up and analyse in retrospect. It has allowed me to identify trends, like what activities cause what symptom or payback, which, in turn, is enabling me to plan what to avoid to keep symptoms bearable. 

So, boring as it is, I'm sharing my experience in case it can be of use, merely from the process itself, or something I describe that perhaps resonates.

Even reading it back myself (you'll be glad you don't have to) 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) ... 

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. Of course, if I actually tried doing anything, that would be a different matter. 

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 ill after all, then overdo it and go right back to the start all over again. At least 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 or exhaustion 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 like IBS. And 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, certainly never take Buscopan, completely avoid binding foods like eggs and never, never, never deviate from my 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 does not want to understand this, I leave and change dentist. And I carry a medical alert card that explains the intolerance too.
• 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, attacked and slandered by them were among the reasons I had sought support from counselling services, because I had 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.

Christmas 2011

Enjoying the chance to put up a tree

What do you give Canarian cats if not catnip bananas?

And something to wear in a cold climate!

And he slept in it almost all of the rest of the day.

Funerary Fiascos

My mother managed to put the 'fun' back into funeral.

For the record and the sake of my sanity, here's the fiasco of my mother's funeral. When my mother died in Sep 2011, I knew that her funeral was all pre-arranged, because when my father's mother died back in 1993, he bought two funeral plans for himself and my mother out of the proceeds of the sale of her house. He always liased with me on these things, so I knew about them. As I'd jointly arranged my father's funeral in 2001, I already had experience of the whole procedure. 

Of course, because my mother had made a recent - very successful - career out of convincing people that I'm entirely stupid, lazy and a liar, I was judged incapable of being able to handle this. My mother was admitted to hospital in August with a virus - obviously a risk factor in addition to the chronic leukemia she was having chemotherapy treatment for - but it was the fact that she was subsequently pumped full of IV antibiotics by the hospital that probably finished her off. 

This is something I can say confidently, because antibiotics are absolutely not indicated for viral infections and, in addition to the chemo (the chemo she denied having, but it's in writing on her death certificate!) depleted her immune system. So I queried the antibiotic use with the hospital doctor. Pretty sure it was as a result of my raising this issue that, despite the fact it wouldn't normally be done when she was already in hospital, they involved the coroner. To me, that means they knew they'd done wrong and were perhaps expecting a complaint. 

Anyway, despite the relationship we had, I compassionately kept up the pretence that she could get better. It's what you do if you're a decent human being.

On the other hand, a so-called [former] family friend visited this frail, dying, old woman in hospital and outright asked her if she had organised her funeral. 

How do I know this? Because the idiot came straight round to the house to 'proudly' announce exactly what he'd just done, clearly in panic with the impression that I couldn't know what was already organised nor be able to carry out those plans. He's not related and at no point ever was he going to be responsible for this. 

Seriously, I could not believe what he was saying and that he had been callous and insensitive enough to ask my mother such a question. I was and am, horrified and incandescent with rage and sent him away to never darken my door again. 

Very deliberately, because of this unforgivable behaviour, I did not invite him to the funeral, but he just didn't get it and gate-crashed it anyway, along with his wife and other uninvited parties. He also contacted me again afterwards, claiming that certain things I did - like where her ashes were scattered - was not what my mother wanted. It was what was pre-arranged. It's possible my mother could have had one of her hairbrained ideas (that wouldn't have been allowed anyway) that she'd mentioned to him, but remember, I had the funeral plan in writing. He could f*ck right off. He kept ringing and I blocked him in the end. I've had no further contact, but I'll bet he hasn't worked it out and still thinks I'm in the wrong.

If she had changed her mind since those 1993 plans had been written, she had not told me, neither had she had the plans amended or changed and it was not up to me to make any changes to them based upon any "hearsay". So I didn't.

Oh and I was her executor, so I was officially, legally, responsible.

Even I was surprised at the detail in the funeral plan in writing. The only item not included in the price was the person to conduct the funeral. So I chose and briefed a non-religious celebrant and everyone was very complimentary about it. 

Obviously, I wrote what the celebrant delivered - I don't think anyone considered that I had, or it would have been criticised, I have no doubt - and I will say that he did deliver it beautifully, naturally, as though he actually knew the person he was talking about. We also included music from my mother's collection.

The only other item I had to chose was the colour of shroud. So I asked the funeral director if he had one in beige. Yeah, I was being sarcastic, but she loved beige.

The funeral plan included both the hearse and a limo. Because of issues with neighbours (the ones who threatened and slandered me, who I didn't want turning up at the funeral, nor coming out to heap yet more abuse at a cortege), I chose not to have the hearse come to the house, but to meet us at the cemetery. 

All through her life my mother had been utterly incapable of being ready on time. So much so that, for example, if they were going out somewhere, my father would tell her to be ready half an hour earlier than needed. He knew it was the only way she would ever even approach punctuality. So, we got to the cemetery in the limo and had to wait for the hearse. Yep, she was late for her own funeral.

At which point I disolved into fits of giggles. As you do.

For the same reason of not wanting abusive, disrespecting people at the house, I did not arrange a wake and didn't want to be at home in case anyone turned up expecting one, so I and a couple of friends went down the pub and raised a glass. If my mother had been there, I'm sure she'd have been happy with that.

On the morning of the funeral, additionally, it became clear that a group of mother's work colleagues thought the “no flowers” request I'd communicated was my choice, and therefore they were going to totally disregard it. Why would they do that, unless they'd been 'trained' by her to disbelieve and disregard me? Would they have disregarded a similar request from anyone else's family? Absolutely not. It was only once I'd pointed out that this was my mother's wish – which could be confirmed by her similar request for no flowers at my father's funeral that they had helped out on – that they seemed prepared to do as requested. 

For the record, after living in Spain for 16 years, where the norm at funerals is for masses of huge floral tributes, if I were to have imposed my preference, it would have been to have had as many bright and cheerful flowers as possible to lift the spirits of the day. But it wasn't about me and, despite our history, I actually did everything my mother had wanted and followed plans to the letter.

The flowers I had placed on the coffin should have been the only ones, according to her wishes, and were a very deliberate choice of the nearest to the roses that she'd had in her bridal bouquet. It was what she had chosen for my father's funeral and it was what was most significant to her, which she had often mentioned. 

It was also deliberate that they were just a simple, un-arranged spray. My mother's flower arranging and floristry work was outstanding, so I was not about to insult her by giving her someone else's, inevitably inferiorly, arranged flowers. 

But there were lots of arranged flowers for her at the cemetery, so lots of people had ignored the request after all - my mother wanted donations to go to Cancer Research instead, just as she had asked for, and got, for my father's funeral - but because of the lies she had spread about me, people disregarded her wish. 

She was, deservedly, hoisted by her own petard in the end.