Things That Worked for Trenna -Part 2

Strategies and tips used by someone with a degenerative condition and chronic illness

By Greg

Things Trenna and I Tried, That Worked

in no particular order

This is the second part of this list. For the first part please click here.

I’m already working on part 3 as things we have done in the past pop randomly into my scone.

Coloured Lever Arch Files (although there are electronic filing alternatives now)

As you will find out by going through this website, Trenna was a great record keeper. She was starting to move to a more electronic way of keeping records but we still had a long way to go, so many of our records were paper based.

Things like bank statements, records of share holdings, superannuation statements, receipts for major purchases (and some smaller purchases) etc. She would file these in lever arch files, each one a different colour, as her poor eyesight meant it was very hard for her to read labels on the spines.

She would pick obvious colours. For example things to do with our retirement planning were in the grey file, things to do with our (red brick) house mortgage where in the orange file, and receipts relating to purchases outside or in our garden sheds were in the green file.

Having a dog

I’m already planning a separate post on the dogs in Trenna’s (and my) life. She found it comforting to have a companion when I was away, someone to give her a little exercise when she was able, and someone for whom she could be the carer.

However, we did discover that looking after a puppy is a totally different situation, and quite exhausting if you already have health issues.

Making like a sword swallower when taking pills

Some people have no problem swallowing pills, and some have a lot of trouble. Trenna took a LOT of pills and she was great at it. Her best advice to me was to be like a sword swallower. Lean your head right back so there is a straight line from our mouth to your stomach. It makes a big difference.

Cutting and breaking pills in half

Sometimes a half pill is the right dose. I used to deal with that by getting a really sharp box cutter or similar and trying to cut the pill in half. Even using the line that most have it was still hard to get 2 “equal” halves.

There are two better ways we found. Either use a pill cutter that stops the pill moving whilst it cuts, or break it manually.

Pills that have centre line on them break easily. Put it on a hard surface in front of you, lined side up, with the direction of the line facing towards and away from you. Put a finger on the left side of the pill, another finger on the right side and press both fingers down firmly at the same time. It works remarkably well.

White bezel on iPad and iPhone

From about 2011 Trenna used an iPad, and later an iPhone. I talk about that in the first of this series of posts, here. In both cases she found the versions with a white, rather than a black bezel much easier to see and locate. I once bought her an iPhone with a black bezel and the difference was very obvious. At the time (I don’t know if it still applies) Apple allowed 14 days to return it no questions asked, so we swapped it for the white version.

Heated swimming pool

Perth weather is quite warm in summer, but Trenna, being quite skinny, and with dodgy blood circulation really felt the cold when she got in our swimming pool. She therefore rarely used our pool.

Her lack of strength in her last years actually meant she wasn’t strong enough to swim any more. However, after about 25 years of pool ownership we heated the pool using a heat pump that ran (at hardly any cost) from the surplus power generated from our rooftop solar cells. Trenna then found it much more comfortable in the pool, and in her last couple of years was able to have water based physiotherapy at home.

Job of The Month (JoTM)

I know some (most?) households have a big list(s) of jobs that need to be done around the house. We had that to, but Trenna devised the JoTM, which was a SINGLE job or project that we both agreed on each month and would do whatever we could to get that ONE job properly completed by month’s end.

Provided we were realistic in the jobs we picked it worked really well, and over the years many of the jobs that had been lingering on other lists for ages eventually got actually completed. It’s like magic!

Of course, you can still do other jobs.

Seatbelt sheepskin doubling as shoulder bag strap

I mentioned in Part 1 of this post the sheepskin pad that fits on a car seatbelt to give a bit more padding, but I forgot to mention that it can be moved and used on the strap of a shoulder bag or anything similar. Much more comfy.

Union Jack exercises for blepharitis

Blepharitis is a very uncomfortable inflammation of the eyelids. Trenna got it a number of times until Dr Walsh, the ophthalmologist told her to every morning hold a very hot compress – Trenna used a folded flannel dipped in very hot water – to her eyes and to do the “Union Jack exercises”.

With your eyes closed, look up, look down, look left, look right, look diagonally up right to left, look diagonally down right to left, repeat for about 5 minutes.

Trenna, never one to waste time would use the time to do gentle physical exercises at the same time such as lifting herself up with her toes, or gentle stretching exercises. The fact that she very rarely got blepharitis after starting this routine SUGGESTS that it works, but of course we can’t be a hundred percent sure.

I have done a seperate post on this, here.

Hearing aids for the carer

I have some hearing loss. However, I knew this but was reluctant to get hearing aids because of the expense, and an incorrect perception of stigma, or admitting that I was getting old.

I eventually realised that it was hard work for Trenna to keep on repeating what she had said, or to call out to me multiple times. There were also times when I misheard what doctors were saying – sometimes important stuff.

I eventually got a pair of hearing aids – and at a subsidised price as I was receiving a Carer’s Pension by then. It made a world of difference. Our conversations between each other became less stressful, and just nicer.

And I knew I was doing my bit to try to help Trenna.

The “Trenna Theory of Carparks”

The TToC is that the people who got to a particular event or venue first got the best carparking spots right near the entrance; BUT those people have been there the longest so they are more likely to be leaving; AND people arriving later are inclined to think the close carparking spots are all taken; SO always go look for a really good, close carpark first.

The TToC works remarkably well – but don’t tell anyone else about it.

The Trenna Car Parking Bay Spotting Method

The TCPBSM is another useful tool when entering an outdoor carpark. Frequently cars cast a shadow that goes beyond the car bay. This means that as you drive down a row of parked cars you can still spot those pesky little cars that are parked well into the bay but hidden by the Toyota Landcruiser.

It stops you getting prematurely exited that the TToC has worked, or gives you early notice of an available bay.

Drink plenty of water, and carry a water bottle

Most people these days know the benefit of staying well hydrated. In the first years Trenna and I were together she suffered quite a few headaches, but once she stared consciously drinking quite a bit more water just about all the headaches disappeared.

In her last few years she was on fluid restrictions because of her heart failure, but she still made sure she could drink what was allowed.

Most of the time we used a carry bag specifically to carry a water bottle. And, we carried it everywhere.

Being in the mosh pit

I will do a separate post on this, but for a number of years we just didn’t go to concerts. Trenna would usually be in quite a bit of pain sitting in one spot for an extended period. Plus she really couldn’t see what was happening – which is a big part of why you go to a concert.

The solution turned out to be – go and stand in the mosh pit, right in front of the stage. You can see WAY/ WAY better, the atmosphere is FAR/ FAR more energising, and the effect on the body seems to be less severe.

Yes, it can be tiring standing for a long period (it all depends on what your particular physical situation is) but we found the ability to move around a bit, the ability to stretch when you liked (it just looks like you are cheering) and the extra adrenalin rush of just being there made the event both more survivable and more memorable.

Homatropine

This might be a fairly specific one to Trenna, but in part it demonstrates that it is worth experimenting, even with treatments that seem a bit counterintuitive.

Homatropine dilates the eyeball, and in most people it makes it harder to see. But Trenna had a substantial piece of her lens suspended in her eyeball from when it dislocated as a child.

The Homatropine opened up the pupil to let the light in “around” the obstacle and to her retina. She still had appalling eyesight, but Homatropine every day helped.

Big “S” on the shampoo

Of course when you take out your contact lenses or remove your glasses before showering you can see even less. Trenna would use a permanent marker on the top of the shampoo bottle to let her know which bottle was shampoo and which was conditioner.

She probably couldn’t read the large “S” but the one with the dark smudge on it was the shampoo!

Theatre mode on the TV

Most TVs have a Theatre Mode or some similar mode that darkens slightly the picture for viewing in a darkened room. Trenna had that on all the time. Given her photophobia it was much more comfortable for her. I never thought the Grand Prixes looked quite as good that way, but I still loved watching them with her.

The 3 hour holiday destination rule

In our early years Trenna and I did many long holiday trips in cars. However, eventually her body just took too long to recover from long car trips.

As a result we implemented the 3 hour rule, and only went to destinations within 3 hours of home. It was a bit disappointing though that we lived in a state that is more than 2.5 MILLION square kilometers in area! (That’s about 1 MILLION square miles.)

Showering with sorbolene

Trenna found that soap tended to dry out her skin. She moved to just using soap for some areas of her body, and for the rest she used sobolene, which is a moisturiser. It worked very well.

Long casual lunches at home with friends

These work for everyone – surely?! When Trenna’s mobility and fatigue became quite bad it was easiest to stay at home and invite, usually one, friend over for a casually lunch. Typically I would put on the table fresh crusty bread, cold meats, cheeses and antipasto type items. The three of us would just sit around, relax and talk (a lot!). It still tired Trenna out, but she found it very enjoyable.

A morning cup of coffee

Lots of people think they need one. Some probably do, some probably don’t. Careful observation of Trenna, by both her and I indicated that in her case case it definitely helped her to be more alert and active in the first half of the day.

However, Trenna pretty well only ever had the one cup of coffee in the morning, other hot drinks in the day would be tea.

A white cane

I’m surprised I didn’t think of this one earlier, because it can be a big help. Obviously this only applies to people who are legally blind and entitled to carry one.

I’ll write a separate post on white canes and assistance to the visually impaired. But it came into it’s own when shopping. Swinging a white cane in front of you whilst walking through a shopping centre clears MOST people (not those with their brains buried in their phones) out of the way and stops you having to duck and weave, or be jostled.

It was also used as a pass so no questions were asked when Trenna wanted me to go into the women’s fitting rooms with her.

SUVs or similar cars with high seating

Trenna loved her Suzuki Grand Vitara. We bought it in 2000. It had high (but not too high) seats so it was easy to get in and out of, and the higher than average seating position meant she had better visibility in it.

Clothes shops that gave cash change-of-mind refunds

It got very hard for Trenna to shop for clothes. Eventually we got to the point where I would go to a shop, check the refund policy, and then buy a load of clothes (often hundreds of dollars worth) and bring them home for Trenna to try them on when she could.

I would usually then take all or most of them back to the shop! But at least I was able to get our money back.

And What Didn’t Work

Fitting rooms

Most fitting rooms in women’s fashion stores were really hard work. Trenna needed a second pair of eyes when trying on clothes, and when she got physically tired (which was as soon as she started trying on clothes) she needed assistance.

Also, hardly any fitting rooms are appropriately lit, either being way too glary or too dark.

Usually there wasn’t a problem but a few times the autocrat chosen (or the poor shop assistant who drew the short straw) to guard entry and exit to the fitting rooms tried to stop me entering to assist. Fortunately they were never any match for Trenna!

After she got her white cane we would just wave that and we would walk right through.

Shops that don’t give cash refunds

As mentioned in the “What worked” section. If they didn’t offer a cash refund it was pointless me bringing them home for Trenna to try on.

Are you someone with a chronic illness or disability, or the carer for someone in that situation? If so I’d love you to add your own tips and tricks via the comments section below.