Roid revs

I was on 8mg of Dexamethasone twice a day till yesterday, when the dose was halved. Steroids a good things when, like me, you have a swollen brain; they’ve eased my headache considerably, and lessened some of the deficits – in particular the dropping and smashing of more or less anything I tried to pick up or carry.

Steroids are produced by your body naturally, and I would sometimes encounter a patient with an insufficiency. Any stress on the body whether from illness, or trauma, or emotion rapidly becomes a medical emergency for these people because steroids are a part of the chain reaction, also involving adrenaline, in your body’s fight or flight response.  It’s the steroid that causes glucose to be released into the blood to fuel the raised heart rate and increased blood flow to the muscles ready for action. If you’re deficient in any part of the chain of hormones in this process, you cannot respond to stress and you die unless you receive steroids artificially.

The effect of steroids then is pretty dramatic I take them at 8am and 1pm and for a couple of hours afterwards I’m wired, but not in a nice way. They’re stress hormones.

My Mum has a little Suzuki Jimny, which lives in her garage at the bottom of a steep driveway. She is very small, and moves like a rocket, hurling herself at everything. I feel like the Jimny revving up on a flight or fight up the driveway.



Admin and dogwash

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.

IMG_1421Next 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.