Ministrations and Frustrations

It seems remiss of me not to have given ratings recently for my current abode. The quality of care I receive Chez Rents is simply outstanding. The three live-in carers for me, L and J are truly amazing and I literally don’t know what we’d do without them. Their physical efforts, energy and dedication are something to behold. To give you a small glimpse of what they face each day, it includes the following:

  • Mam and/or Dad getting up with Jennifer and, on relevant days, getting her ready for nursery/pre-school.
  • Graham getting up with Leo every day, which has thankfully been around 7/7.30 am recently but teeth 9 and 10 caused him to wake crying from 5am for a while.
  • Graham frequently assisting me overnight and early mornings with seizure-related shenanigans, sometimes while simultaneously looking after Leo.
  • Mam/Graham assisting me into the bath or shower, or washing at the sink/bed, and getting ready, the majority of the time.
  • Ensuring a person is on standby at all times, even if I feel well enough to wash and dress myself for example, for unpredictable seizure activity, which has struck while I’m on the toilet, washing my face and standing by the door ready to leave for radiotherapy.
  • Graham in particular has had to practically carry me to the Ice Cube if a seizure has occurred in another room.
  • Mam, Dad and Graham preparing me fresh and healthy meals every single day with generally an extra breakfast mid-morning and a snack mid-afternoon.
  • Travel to and from Radiotherapy appointments.
  • Sorting out my tablets (I currently take 19 tablets overall at four separate times during the day).
  • Entertaining, caring for and transporting the children.
  • Seemingly endless paperwork and jobs that don’t stop because of the Squatter.

All of this would be a burden in the best of circumstances but especially so given the various infections and ailments that are doing the rounds and have hit each of them. Plus, of course, they are naturally worried about me so they have the added emotional stress. We are living hour-by-hour not just day-by-day; everything can change in an instant, as has been shown time after time.

I am not the easiest of patients. I am both demanding and get frustrated that I can’t do more for myself and with the children. I am not getting enough sleep and so my frustrations are closer to the surface and more likely to spill over. I vent my frustrations at the three of them about things that aren’t really the issues that are causing me the most stress. As is often the case, we lash out more at those to whom we are closest because of the security of knowing that they won’t desert you or love you any less. I know that this is not fair even as I’m snapping at them: they are the ones doing all the work and they are not getting enough sleep either.

So, in the immortal words of Louis Walsh, my endorsement is “a million percent yes”. 🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟 Here’s a big fat public THANK YOU to my three Musketeers 🙏 👏🏻.

(We have a lot of practical and emotional support from many people. More about that at a later date, it’s worthy of its own post.)

Hair Has It All Gone?

As an update to Hair Today, Gone Yesterday, I have lost even more of my hair. I currently have a great bald patch wrapping around the vast majority of my head, including some sharp zig-zags that some footballers would covert.

I have a strip of hair in the middle and to the right on the top of my head, including some longer hair and some of the hedgehog hair that has grown back since my surgery. What remains of the longer hair at the back and sides has been thinned out considerably so I spoke too soon in Hair Today, Gone Yesterday, as I have less hair than Bill Bailey!

All in all, I estimate that I’ve lost about three-quarters of my hair. The rate of hair loss has slowed down considerably (not least because I can’t imagine that there are many hairs holding on that haven’t already been zapped) but there are still a few strands coming out each day.

The bits that remain are doing their best to make it look like I’ve got hair when wearing headwear:IMG_2068.JPG

For pictures of the front, back and sides without my trusty merino wool purple buff, see here.

Seizology

I’ve updated the Seiziodic Table in The Grand Old Duke of Jackson to confirm that, as suggested by Sarah Muller, the new seizure activity has been named “Snoozie Doozie”!

State of Play

I’m generally feeling much better this week, not least because I’ve shaken off most of the infection that plagued me last week and continues to plague the people of the house.

I’m tired. I assume that part of it is the tiredness that accumulates during radiotherapy, but it feels more like sleep deprivation than fatigue. I’m sleeping erratically and in fits and starts. I’ve been falling asleep anytime between 7.30pm and midnight for anything between one and five hours’ sleep. I am then generally awake for a couple of hours before drifting off again for an hour or two.

I was awake for good from 4.10am yesterday morning because I’d been asleep much earlier the previous evening. This morning, however, my awake time was between 2.30am and 5am, which meant that I slept again until just after 7am. There is no pattern to the energy levels I have from one day to the next, which is infuriating to my pattern-seeking brain!

On the seizure front, I’ve had a few episodes but General Jackson hasn’t reached higher than a Snoozie Doozie since Saturday night. On the mobility front, I have minimal upwards and downwards movement (and no lateral movement at all) in my toes and foot. While I can still only walk short distances, I feel increasingly steady and strong when doing so. Graham says that I have better rhythm in my walking than I have done in a while. I think is because the movement and strength that I’ve recovered in my foot, ankle, thigh and hip in particular has enabled me to re-learn how to walk such that I don’t have to think too much about the mechanics while walking. Leo has well and truly won the race on the walking and balancing front, but I’m ok with that given where I was a couple of months ago.

rx

 

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