July chitchat

[agate]

People here go to considerable lengths to avoid going into assisted living or a nursing home. I think I mentioned a while back that one of my neighbors is over 90 and using a power chair, unable to get in and out of bed by herself, and yet she's still in her own apartment, relying on three helpers whom she pays. The helpers are all neighbors--I guess she doesn't want to deal with an agency.

If I were in her situation, I'd prefer dealing with an agency but she probably feels more comfortable with neighbors she knows--and she knows they will be right here in the building where she can call on them easily.

[Virginia]

Agate, I admire your neighbor who hires her own helpers and stays in her apartment. I am not sure I would want to do that. There are too many times when a person needs something that they have not counted on. I think I would want an agency that I could call on.

The place I mentioned is an apartment so if you have any help you have to get it on your own. The difference in your apartment and this one is they pay your utilities and food. Still I can pay those things cheaper here for a place much larger and hopefully maybe will continue to go up in value. I will make the decision month by month and day by day.

I have spent much of the weekend shredding papers that I no longer need. This week I will work with my insurance agent to get my car and home insurance all straight. I have to pay both of them this month.

[Virginia]

Both Agate and Tim are missing. Hope both are alright and enjoying themselves. Let us hear from you when you can.

[agate]

Thank you for your concern! I've been trying to find out more about what is going to happen with the laundry here in this building as well as getting ready to go for routine lab work (today) even though it will be 93'. I'm hoping that the vans and the lab will have good air conditioning.

[Virginia]

I do hope Agate is in air conditioning. Heat is really hard on most people with MS. I would think the lab and the van would be but I think Agate sometimes has to stand outside and wait.

Jingle are you doing alright?

[Prot]

I'm doing OK. Saw my care-coordinator yesterday to start creating a personal wellbeing plan. More will be done in August.

A personal wellbeing plan is a collaboratively written guide that empowers you to manage your mental health by identifying what keeps you well, what might trigger a downturn, and the early warning signs that you’re slipping. It lays out stepped actions—from everyday self‑care routines through coping strategies for triggers, to clear crisis directives and post‑crisis recovery steps—and names who to contact at each stage. By putting your preferences and strengths at the center, it gives you control, helps carers respond accurately in tough moments, and promotes consistency and early intervention. In the UK, you can usually begin one via your NHS care coordinator, a “WRAP” course, or local Mind/Recovery College, then share and review it regularly as your needs change.

Should have started virtual CBT. Unfortunately I could hear the therapist, but he couldn't hear me. Been reading about the floods in Texas. So many lives lost,unnecessarily.

[Virginia]

Tim, that sounds like a good plan and I really hope it works and is a big help to you.

Earlier today I mentioned Agate possibly being out in the heat. Not long after that I realized my house was getting too warm. When I looked at my thermostat I was right. My heat pump will be 4 years old in September. I called and they are coming out tomorrow. Meanwhile we are under a heat advisory here due to the hot weather. I decided about an hour ago to turn it completely off. I was hoping if it is frozen that maybe it will thaw some in a couple hours.

[agate]

It's still 93' outside but I'm back from my big adventure--a trip for lab tests. Luckily the vans and the lab were air conditioned.

I've found I can fine-tune some temperature issues. When I got on the van for the return trip, I asked the driver if the air conditioning was working, and he said it was, but I noticed that a window near me was open an inch or so. I asked him if he wanted it open--and he shut it.

The lab test results are in already, and I'm celebrating. The one I was worried about--potassium--came out normal, and that has probably saved me from more frequent lab tests, more trips, and possible changes in meds.

The HbA1C was excellent at 5.2. It shows that the diabetes is being controlled by diet, still.

There were a few abnormal results. Most of them aren't anything anyone ever worries about but I don't know about the abnormally high AST (SCOT) test.

[Prot]

I had help from an agency when I first moved from Essex to Wiltshire. It took the agency ages to realise they should have been charging me for the help given. Result a large bill to pay! Opted to bypass the agency, and pay the carer privately. It worked out cheaper, even with paying the carer more than she was getting from the agency. It worked fine till she got a second job as a school cleaner, and caught COVID (COVID outbreak at the school).

[agate]

You had to move during COVID? That must have been difficult. Just about everything was difficult during COVID as I recall. Couldn't get in to a building where I had any medical appointment without going through a checkpoint first where questions were asked and temperature was taken. And the seating was all rearranged, everywhere I went. And I was getting the easy part of COVID. The people who had to work every day or be out in the world often must have had a much harder time of it.

It's been pointed out that people now are saying that there was really nothing to COVID, and why were all of these drastic measures being taken? Actually it was (and still is) serious but the people who are objecting that it wasn't are the ones who didn't notice that it was older and more vulnerable people who were dying of COVID or being stuck with lasting symptoms. Those people all too often get overlooked. Or treated as if they don't really matter.

[Prot]

You had to move during COVID?

I moved in September 2017.Had help from a care agency first of all. Opted to pay the carer privately several months before COVID hit the UK.

[Virginia]

I was on earlier today and posted but something is happening with my tablet and I couldn't finish the post

Tim it must have been nice to have a carer that you liked at least for that period of time. I wonder if your daughter and granddaughter could get paid now. It is my understanding that they are the ones who help you now. I hope the new well being plan is helping you.

Nice Agate that your test turned out as well as they have. You must be doing something right. Glad you didn't have to be in the heat yesterday.

I am not sure what is going on with my air conditioning unit. I left it off until close to 2AM last night. I just set here and did nothing to try not to generate more heat around me. I turned it back on about 2o'clock and laid down with very little cover. I finally dosed.off. When I got up a little later the house temperature was 72 which is where I had my thermostat set. I turned it up to 75 and so far I am getting cool air. I don't know if my air conditioning man came before I got up and worked on it or what is happening. I have expected a phone call all day but have not heard from him. I just hope it doesn't go out again.

[Virginia]

Well,.I can say unequivocally that my air conditioning man did not come. Air got very warm about 4PM today. I turned the entire unit off like yesterday. I left it off for an hour. It did come back on but the air has not gotten down below 77. I have it set on 75. I am trying to decide if I should give my shot or not. Called the air conditioning man again this evening to see if he could give me an estimate on time he might come. Went straight to voicemail and I haven't heard anything. Staying in heat just zaps me.

At least none of us are in Kerrville Tx. So guess we should count our blessings.

[Prot]

Virginia, I make sure my daughter and granddaughters are well paid for the help they provide.

[agate]

Virginia, I hope your air conditioning can be fixed ASAP. Being without it must be very difficult there.

I hope you have some fans to tide you over?

I could pass along my way of getting along without air conditioning but you probably already know about it from your own experience. In WA state air conditioning wasn't allowed in the building I was in, but around there people often got along without it because summers weren't usually hot.

Except when they were. Sometimes we had a hot spell.

I made a point of always trying to get a place with north-facing windows. A double exposure was good too--windows facing north and east, for instance. West and south--not so good.

I would get up early enough to open the whole place up and run the fans so as to draw in any cool morning air. Then when it warmed up near noontime (or before), I would shut all windows so as to trap that cool morning air inside, and keep all fans running all the time.

If it cooled off in the evening, I would open up the place again and keep those windows open all night with the fans going.

I often had a large box fan that I could put on a windowsill or near it. It's really not safe to put it on a windowsill but for years I did that.

I thought about getting a swamp cooler. I've heard mixed opinions on those and never had one but many people do get them, I think.

Do you have one of those cooling vests that are available for people with MS? I had the wrist coolers and the vest and used them sometimes.