A lovely day at Wembury where some of my gals took me for lunch and a gentle amble along towards the point. We failed at selfies as you can see. So many laughs, and lovely food. I also received a tiny manic fish, and my first ever pair of hand-knitted socks courtesy of S. Luxury.
I was lying on my bed, considering a nap and selecting the music from my iPhone, when the letters blurred. I thought it was the phone, but it’s most definitely me, and it’s in both eyes. I called 111 and got a call back from the out of hours GP within 20 minutes.
He says dexamethasone can cause cataracts, and in a short time, although this is really short. I also wonder how they could form in both eyes at the same instant, so I suspect it’s Hunt/swelling related. The other symptoms have reduced with the dexamethasone, so it’s a little worrying.
As I knew, there’s nothing anyone can do about what is simply one more of the list of symptoms associated with my condition, since the cure for the irritating Hunt and the associated swelling is surgery.
I can vaguely see what I’ve typed here, but I can’t really make out the letters on the keypad. Best get the voice recognition trained fast this evening.
My first thought was to look up blurred vision and research the steroid cataracts, but I can’t see well enough. That realisation that I can’t read is quite traumatic. My contact is mostly online, where I keep up with what’s going on. Radio 4 podcasts on random topics will have to do. I wonder whether this will ease once I’ve slept, but don’t want to hope.
If it doesn’t, and I manage to blog, it’ll be in one go and uncorrected so forgive the mistakes.
I think the visual blurring might be related to dexamethasone as I found it on the list of rarer side effects. I’ve found I can read better by looking at the screen from the left periphery of my vision, and with glasses on, .which looking straight ahead blur the writing more!
Anyone have any experience of similar side effects?
Talking to my recently-bereaved friend H earlier, she tells me of a striking dream she had which a friend analysed for her. I’ve always had lucid dreams, and some of those have been recurring, nightmare types where I can often change an event, though not necessarily in a way that avoids the horrible tangle at the end. We have a meandering conversation, comparing dreams and our ability to control them.
I realise that I’ve not dreamed since the diagnosis, and I wonder if that’s the steroids, or something else. I always wake thinking about my situation, but from an apparent head void. I get up and write; I can’t focus on reading as I normally would because those circular thoughts intrude almost at once.
I tell H about the man. He’s always to the left side of the bed, the direction I face most often when sleeping. During the night I’ve been aware of a gradual weight on my chest, a pressure that builds and begins to squeeze the breath from my lungs. I wake but cannot see his face. He’s been there for a year or so, and sometimes, infrequently, in the past.
Since the summer, the man has stopped sitting on my chest, and instead grabs me in a cobra strike from the side, hands clawing my neck, snarling face, silent. It’s the hand that comes for me, fingers spread, arm locked. Sometimes I feel the impact on my neck and I’m so sure he’s real but I can’t move to stop him. My heart pounds till I can consciously pull away from the vision, building the courage to turn on the light and banish him to the night. He’s been there sometimes nightly, more often two or three times a week.
Over that period, I had been having random bouts of depression, struggling to achieve anything concrete. It was a difficult time. I’d lost my job owing to OA and a back injury, and was trying to get a business off the ground. Usually, when I take on a mission, nothing will stop me, but I’ve been unable to stay with anything. Antidepressants made me feel dead in my head, so I stopped taking them. My GP suggested CBT, which I attended, aiming to work on planning my days and achieving some direction. My therapist was confused by me.
“I don’t think you’re depressed, it doesn’t fit. There’s all this anxiety, and maybe that’s related.”
By this time, I was randomly bursting into tears about the refugee situation in Syria and elsewhere, raging at the government for their inactivity. For the first time in my life I stopped watching the news because I couldn’t bear to see those smug faces. I was on Facebook and Twitter for hours posting on thread after thread, feeding trolls on websites in an attempt to get the message across that these are people who are desperate victims, and being called a lefty feminist Hunt repeatedly. I felt hopeless. My therapist tried to direct me to areas where I could make a change, to focus on my own projects, let go of the things I can do nothing about, or regulate the time I spent thinking about it.
Through it all, the nightmare man appeared with increasing frequency. I never felt I’d had a good night’s sleep, ever. A warning about Hunt?
Having managed to negotiate the DWP yesterday, I’m aware that time is running out; I need to organise a host of apparently minor things because I have no idea what state I’ll be in after surgery nor how much that will affect my ability to manage the day to day aspects of life. That’s an area where, while I’m cognitively normal, the small declines and deficits have had a significant effect. With no regular income, my finances are a particular concern, because money has to be earned and then managed on a daily basis. I’m going to ask my brother to take on Airbnb and Paypal for now, so that’s one part of the plan.
I’ve been thinking about TrannyVan who is my VWT5, camper conversion for several days. She’s my pride and joy, and I had plans to add a cupboard and make curtains before the summer. Now, though, I’m not allowed to drive, and it looks likely that this will be the case for at least 2 years if Hunt turns out to be the expected type of tumour. The insurance is due, but I haven’t received a reminder, and at the last look I had £121.42 in my bank account.
One of the more subtle effects of Hunt has been an increasing difficulty in entering passwords and dialling phone numbers accurately. When I broke my Macbook over Christmas, I had assumed that I couldn’t get the passwords to enter because I had the wrong backup for icloud keychain, the place where all those passwords are stored. Frustrating is not the word when I was certain that I had one of three or four variants of a password and yet account after account was locked out. Recovery failed too, because I couldn’t provide the required information of the last password you remember, or the subject of the last emails sent, or addressees of emails; this is not something you can get around, because obviously companies such as google have a duty to try to prevent hacking. I think now that I knew my passwords but had been entering them dyslexically, because this is one of the problems associated with damage to the parietal lobe.
Once you’re locked out of a couple of email accounts tied to online sites and accounts, you receive no notifications from those accounts. Furthermore, when you wrongly enter a password for ebay, Facebook, Twitter or online banking, the code to reset your password is sent to the email account from which you’re locked. This aspect of Hunt has spiralled out of control since December, to the point where I get anxious at the thought of having to provide a password for any online account, wondering whether I can enter it correctly or remember it at all, or whether I changed the linked email to one for which I have access. I have boo boo boo you have dialled an incorrect number please try again as an earworm. That’s another reason it’s taken so long to set up on the replacement laptop following the total demise of Macbook who is now officially beyond economic repair, after the recent Hunt-induced flight across the kitchen two weeks ago. I’ve yet to start sorting the many documents I need from it purely because I can’t cope with the prospect of trying and getting in a muddle and having no way out.
This morning I called my van insurers, Adrian Flux, who deal in agreed values for campers like mine where the book price of the basic panel van doesn’t meet the value of the conversion. To my horror, the full amount for renewal had been taken from my bank that morning – and the usual emails detailing the quote and so on had gone to an email account to which I’ve no access.
I explained the circumstances, including the part about having insufficient money in the account, wondering how often people phone and make up brain tumours to get out of such messes. They were fantastic. My case was passed on to a manger who organised an immediate, free refund of the premium. I was then passed to a man who discussed the options for laid up cover, took on board the part about my not being able to drive tfn, and then suggested I put another main driver on for 3,000 miles a year which cuts the premium significantly means I’m also covered for the agreed value on Tranny. So I’ll pay in 9 instalments, giving me a chance to get the money, and I can worry later about tarting Tranny up for sale and getting her to the garage and so on for a service. It sounds minor, but the relief is indescribable. I didn’t know what to do, and the anxiety associated with the other things going on in my life simply blocks the ability to sit down and plod methodically through. It’s a kind of panicked stasis.Compare and contrast to the DWP.
Next on the list was to bath Honey, my gorgeous, 37kg woolly, poo-eating, mudlark labradoodle who was frankly, minging. It’s usually a 2 hour job, involving an element of juggling as she makes a few sudden breaks from the bath, and several indoor cloudbursts as she shakes gallons of water across the bathroom. Mum and I managed between us to give her two shampoos and rinse her off. It’s another of those realisations in that while I know I feel weak and slightly off-balance, I hadn’t realised the extent of it; I felt as though I’d just staggered ashore after a currenty 3 mile sea swim in heavy swell.
It’s 5pm. The duty GP is friendly, professional and kind.
“Tell me what’s been happening”.
What has? It’s hard to explain the meandering weirdness like Dr Who music in the background.
I know for sure I’ve somehow lost my proprioception on the left; that sense of where your various body parts are, the way you know what your hand or foot is doing without looking or thinking about it. The space and time. I recall falling yesterday, no trip, no stumble, just there I was face down on the pavement so that it barely felt as though it had happened, were it not for the soggy scab on one knee, the grazes on my hand, and the bruise.
I had made an appointment with my regular GP for next week about ten days back, thinking there was no desperate rush. She’s been so kind, tolerating my increasing woes and slumps of depression, noting I’ve had a difficult year, losing my job through osteoarthritis and a recurring back injury; I am peri-menopausal, struggling to make ends meet with a series of zero hours jobs. She’s checked my bloods at least twice, and spent ages being supportive. My thyroid is fine following surgery in October 2014. I’ve started CBT, and feel bad booking in for yet another moan. I’ve been staying with my parents off and on while I let out my cottage on Airbnb in an attempt to pay the bills. Mum wonders about ME.
Today I took a couple of paracetamol and went to work at the local newspaper, the Tavistock Times where I’m a proof reader. I can barely keep my eyes open. My left hand is strange, I can’t feel any sensation. I look at it and it’s someone else’s, dead.
The previous evening, en route to the local pub with my Airbnb guest, concentrating hard in the rainy dusk, my little van kept stalling, and after reversing into the car park I found we were in an unexpected place. How did I get here? I depressed the clutch and noticed the left side of my van, scraped and dinked, wing mirror festooned in micropore tape like a mummy half way through a Hammer Horror; I clipped the bank a couple of weeks ago. Sometimes you hit a substantial branch when something’s coming the other way in the lanes. An unlucky branch, and a perfectly commonplace incident on Dartmoor.
I can reverse a van in my sleep, and, as a paramedic till recently working in a largely rural area, frequently have – plus we had huge Mercedes Sprinters, far bigger than my little VW. I pull slowly forwards and the van stalls again. That’s maybe the fifth time today. The drive shaft broke in January. Maybe my usually reliable mechanics didn’t fit the replacement properly? Might take it back in and get them to have a look.
Why won’t the pub door open properly? Is that my purse on the floor? I bend down to pick it up and smash my left shoulder into the door edge, fumble the purse and drop it again, before hitting the door with my right arm. My purse is soaked. I put it in my left pocket, then stand on it. It’s on the floor again.
Drinking a half of Tribute, I feel a bit better and manage to chat to my guest for ¾ of an hour while my brain defogs. As we get up to leave, I drop my purse. I can’t pick it up and bump my head on the bar. How? None of it’s sudden, more a feeling of creeping depletion. It’s not a drunk feeling, more a detached oddness, half in space.
In the van, I can’t get my seat belt to clip in. I have a denim seat cover and try to work out where it’s obstructing the clip; I can’t and pull the cover up with my right hand before using that to find the clip. We pull away, and stall. I drop my guest back and head slowly into Tavistock, nervous.
I’m so tired, a good night’s sleep might help. But I haven’t been sleeping well for months. And I’ve got this nagging headache, neck ache, vague nausea off and on. Maybe it is a viral infection, one of those that knocks you out for a few weeks?
The osteoarthritis is getting me down too – I’ve been touch-typing for 25 years and suddenly I can’t do it. gobbledegook flies from my fingers; caps lock, numbers and symbols, words meld.
Approaching the mini roundabout, I prepare to change down to second and there’s a flashing glare behind. The following car has almost run into me, but he hadn’t seemed that close, so I’m unprepared. The world outside isn’t moving in relation to the van. I can’t work it out, look down. My left foot which should be straight ahead and resting on the clutch, is listing to the right and on the brake. I’ve done an emergency stop and then not quite noticed.
I raise my arm to apologise. It takes three goes to pull away, stalling between. I make it home, get into the drive at a wonky angle and enter the kitchen to get a glass of water ready for bed. I pick up my Macbook and suddenly it’s flying across the room. It crunches into the step and I know it’s smashed. The screen’s in pieces and the case dented. I’ve only just got it running again after the hard drive died at Christmas. Then I’d had a nightmare getting it set up and locked myself out of two email addresses completely, along with several other accounts. What is it with icloud keychain? I know my password variations, but they don’t work. The old hard drive turned out to be dented, but I don’t know how that happened. Maybe I did drop it, but it seemed okay.
I think back to the other evening. Leaving a meal at a friend’s I couldn’t find my keys. Searched all over, inside and out, in the van.
“Pockets!” shouted my friends.
“I’ve looked!” I have a large keybunch, not easy to lose.
I feel all my pockets for the tenth time, hear a jangle. What’s making that noise? I can’t feel the keys, can’t feel their shape or vibration, have no sense of their being there, no weight against my hip, no sensory reference. With my right hand I locate them.
Then there was the purse, also last week. I’d been to walk my dog and collect her biscuits at Crapstone, and had my purse in my hoodie pocket. I searched high and low. Told Mum I’d have to drive up there tomorrow since I’d obviously dropped it on the moors and it was dark and raining.
“It’s in your pocket! I can see it! You’re worse than me!” She’s laughing.
I can’t locate it, until I feel with my right hand. Then it’s sort of there, but sort of not. I can’t fish it out. I laugh too, but the fear jolts. Is it dementia? I keep forgetting things, lose names, get the wrong words. All on the menopause list of course.
The GP is assessing my neurology; sensation, movement, weakness and so on. I’ve done similar assessments many times. I know how it works; get the history, ask all those little questions, check the basics and start excluding physiological causes from blood sugar imbalances to heart or blood pressure problems, to infections; these can manifest in all kinds of ways. But I know he thinks it’s neurological, coming directly from my central nervous system rather than the result of another illness affecting it. Precisely what I’ve been trying to avoid thinking. My blood pressure, usually excellent, is far higher than usual, but not stupidly so.
“Do you have an idea what this might be?” he asks.
I do, but don’t want to verbalise it and somehow make it concrete. Stroke, MS, a host of scary monsters. A problem with my brain, my mind, myself. Strokes can be funny, I’ve seen the gamut and they can present in unusual and subtle ways but this has been going on for months, and has escalated in the past couple of weeks so it doesn’t quite fit for me. Maybe it is viral meningitis after all? I’m still trying to explain it away with something less potentially momentous.
The doc sends me to sit in the waiting room while he calls the neurologist at Derriford.
I have an appointment for 9.30 in the morning.
“Lynne, you mustn’t drive”. I should have known that for weeks, but still I carried on.