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Post Office Blues

One of the local charities where I live gives assistance to people such as myself who need help with shopping or other tasks. Jill, my wonderful cheerful volunteer is a boon. She helps me do supermarket shopping. A much less stressful experience than using the staff in the supermarket. (See my blog entitled Why the Difference?). Jill also willingly helps with other tasks that are hard for me to do.

Bright and breezy though Jill always is, her face darkens when I ask her to send a parcel or letter recorded delivery for me. The only post office near where I live is a Sub-Post Office,  (the local main post office was closed a couple of years back) is not easily wheelchair accessible. On the one day I tried, accompanied by a friend to help get my chair over the door step, I was told that my wheelchair was too big to use inside!! The postmaster is not known for his sunny countenance or his speed. When I used to be able to walk into the sub-post office, he once yelled at me for moving a chair so I could sit down as the queue was quite long.

If posting a parcel is not an easy task, collecting one is harder. The local collection office is small and inaccessible. Again, when I could manage to walk in I used to sit on one of the two seats provided, and hope that I could keep my place in the inevitable long queue. But the seats were then removed, I never discovered why. So I resorted to driving into to the car park and tooting the car horn until someone took pity on me and collected my parcel for me.

Driving in and out of the sorting office car park is somewhat hazardous as it’s off a busy main road. It is also rather small, meaning no possibility of turning around. Resulting in having to back out, engendering some interesting hand signals from other motorists.

Having Jill helping me means I can wait nearby in a supermarket car park, whilst she collects my package for me. Making everything much easier and less stressful.

But why can’t all Post Offices and sorting offices be wheelchair accessible and have seating for those who need it? The main Post Office in Eastbourne, East Sussex is a superb example of how a Post Office should be.

I’m aware that some of the regulations for Crown Post Offices do not apply to Sub Post Offices, but accessibility and usability is essential so that everyone can use them freely. After all, we cannot go elsewhere, the Post Office still has a monopoly.

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Puzzling Packaging

Why, oh why to firms insist on over packaging parcels?

I’ve had two parcels this last week, one from a Natural Heath company and the other from a well-known kitchen supplies chain. Both packages were far larger than they needed to be.

The once from the health company contained three bottles of vitamins. Two were approx 4″ high and 1.5″ diameter, the other 2.5″ high and 1″ diameter.

The box they came in was 18″ x 12″ x 9″. At first I thought I’d received something I hadn’t ordered, the container was so large. Having dug down through the crumpled brown paper, I found the three bottles. Each of them was well covered in bubble-wrap. As I tried to extricate the bottles I realised the bubble-wrap was sticky on one side, making easy removal impossible!

It look me over 10 mins to cut everything free. I was left with yet another box to crush and recycle, the packaging going the same way. A task I delegated to Jill, the lovely volunteer who helps me with food shopping and tidying up. She used a full recycling sack with all the boxes I’d accumulated recently.

I expected the butter knives I ordered from the kitchen company to come in a Jiffy bag or similar. They are not sharp, but with their moulded handles much easier to use than ordinary knives. They came in a box too, it was about 12″ x 8″ x 4″, just for four knives!

Again, more crushed brown paper and the knives themselves inside moulded clear plastic on cardboard.

Surely such a large box was unnecessary in both cases? The crushed brown paper was clearly new, and even if it was itself recycled, a waste of resources and adding cost to my shopping.

We are encouraged not to use non-recyclable shopping bags, surely mail order companies should be expected only use enough packaging, not too much?

Buy on the High Street, I hear you say. Not easy in a wheelchair. The only shop where I could order the vitamin supplements is not wheelchair accessible and neither is the local shop selling (rather expensive) kitchen impedimenta.

So until I can access local shops, I have to buy on-line.

Using the local post office and sorting office is another story for a different blog.

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Bottles I can’t squeeze

Every been frustrated at not being able to squeeze the last of the mayo out of the bottle?

Well if you have arthritis, as I do, squeezing bottles of goopy substances is not easy to do. I’m sure that Hellmann’s make much of their profit from the mayo left in so-called squeezable bottles!

Recently one product I’ve used for years, Body Shop Aloe Calming Cleanser, has imagechanged the bottle it is supplied in. At first I though that my fingers were just getting worse, but then quickly realised that the bottle had changed and the plastic used is much firmer than before, making it very hard to squeeze the cleanser out.

I’m reluctant to change to a different brand as I have quite sensitive skin and know that Body Shop products don’t cause me to have skin reactions.

So come on Body Shop, please change this container back again, so it’s easier to use!

And whilst I’m complaining, why does your ‘Love your body’ card only work in your shops and not on-line? For disabled people getting to your shops is not always easy, whilst they are very accessible, there is often no parking nearby making shopping impossible, hence I buy most of your products on-line.

Other stores I use, which also have loyalty cards, allow these to be used for on-line purchases, but not Body Shop. Why?

By not letting me be credited with points when shopping on-line you are effectively discriminating against me and other disabled shoppers in the same position.

Please re-think and come up with a fair solution for all your customers.

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Finding a Cleaner

In London, for many people finding an honest, reliable and competent cleaner is not easy. If you are disabled, it seems to be even more difficult.

When I first needed help with personal care and doing housework, my care was provided through the local authority where I live, an outer London borough. These services were contracted out to care agencies. For the first year when I was living in a different part of the borough both my care and housework were provided by the same agency, and although I was allocated very few hours both the women sent to me were very good. They were kind and compassionate and the lovely woman who did my personal care was actually a qualified nurse in her own country. She was better than many qualified nurses I have encountered in the NHS.

However, when I moved to the area I now live in, although I was living in the same borough, I had services provided by a different agency. In the first year I had them I must have been sent over 20 different carers! I never knew what time they would arrive or who I would be seeing. Very unsettling, even worse, many of them did not seem to either understand or speak English, much less know either how to clean or deliver personal care.

Having managed Nursing Homes and care staff for over 20 years, I am used working with staff from many different ethnic backgrounds, as well as carrying out employment interviews and appraisals. Understanding staff for whom English Is not their first language is second nature to me. Few of the carers I encountered would have been employed by me, or remained in my employment if previously recruited!

It seemed as though I was phoning the agency office to complain on a weekly basis. Even worse was the issue of things going missing from my flat. I had money, jewelry, food, medication and other small items stolen. I also had crockery and glasses chipped or broken. It was almost impossible to get the agency to taken action, such as compensating me or involving the police. On two separate occasions when things had gone missing, I discovered that the person doing my care was not the person allocated by the agency. The carer concerned had ‘swapped’ with a friend!

Complaints to the council, were often a waste of time and breath! Being told, “Oh yes, we have problems with the contract, we will be reviewing it soon”. So I was delighted when I was told I would be eligible for Direct Payments. This meant that I could employ carers of my own choosing and directly manage their employment. Apart from the length of time it took to organise, I seem to remember it was over 6 months and involved two different support organisations it has meant I’ve had much better and more reliable care.

But there have been drawbacks, the first being that the amount of money per hour allocated to pay carers by the council has not increased in the last three years. This means that in order to retain the carers I have to either subsidise their pay myself or employ then for shorter hours. I do a bit of both. To give an idea of the difference, the council calculates that I should pay just over £7 per hour, whereas most carers and cleaners in London charge at least £10 per hour. Quite a difference!

The brilliant woman who does my personal care has been with me for ages and is really good, but she doesn’t usually do housework, so I employ a separate cleaner. Again the first person I employed was good, but she decided to return to her own country on holiday and hasn’t come back to England. For a time my kind neighbour helped out, but then she needed surgery so I had to start from scratch to find someone. I spoke to all the people I knew, but those who had a cleaner said she did not have any spare hours, would have to travel too far, or were changing £12 per hour, sadly well beyond my budget.

I was starting to think that I would have to rely on the Quentin Crisp theory of dusting.

It seemed as though finding a cleaner was like looking for gold dust!

After my experience with agency staff who were not personally known to me, I was reluctant to use one the many Eastern European women who put flyers through my door. First there was the problem of checking documentation. I’m not up to date enough to make sure I’m not being shown dodgy paperwork. I also didn’t want to find myself, as one person I know was, being interviewed by immigration officers about the person she had unwittingly employed!

I was beginning to think I’d never find a new cleaner and was having to ask my carer to do extra hours she didn’t always have time to do. Then my neighbour, who also is also a cleaner, managed to speak to one of her friends who also does cleaning. One her clients had just moved out of London so she had some spare hours. My neighbour knew this woman very well and assured me she was good at her job, reliable and honest. I couldn’t wait to interview her!

Luckily we were soon able to arrange a time, and two days later she began to work for me. I’m so pleased with her, she is hard-working and certainly excellent at cleaning. Friends visiting me earlier this week actually commented on the results of her work!

I’m still getting used to her rather heavily accented English, but we manage to communicate well enough. She turns up on time, nothing has gone missing and nothing broken either! Another of my friends is now on her waiting list.

So finally, I’ve found my cleaner, I just hope that she will be able to stay with me until I move.

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Six Common Misconceptions about the Chronically Ill

This article was originally published on ProHealth.com reposted by Arthritis Care UK and is reprinted with kind permission from its author Toni Bernhard.

More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Misconception #1: If people look fine, they must feel fine.

Whether healthy or sick, it’s good for most people’s morale to try and look nice when they go out. I go out so seldom that I make an effort to look my best when I do. Sometimes I feel like a young child again, playing dress-up. That said, I always hope that if I see people I know, they’ll remember that looks can be deceiving.

I’ve had people say to me, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is…there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body!

When people see someone whom they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible, perhaps from a bad night’s sleep or from lingering symptoms of an acute illness. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s illness or pain were truly physically based, their mental state wouldn’t affect their symptoms.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself

Part One. The next time you feel under stress—maybe you’re angry at someone or worried about something—stop; close your eyes; and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two. Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress—tightened muscles, racing heart, pulsating body and maybe even sweating—you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3. Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

When my granddaughter, Cam, turned six in September, I asked my husband take me to her birthday party for a short time since it’s only an hour’s drive away. It would have been a treat to watch her interacting with her friends (something I rarely get to see) and to meet their parents. I rested for four days before the event. But that morning, I called my son in tears to tell him that I was too sick to attend.

This misconception can lead to serious misunderstandings. For example, a week later, I was able to attend an event for my book. This could make it appear that I was choosing the book event over my granddaughter’s birthday party, but I was not (and thankfully my son understood this).

The truth is that the same amount of resting before each of the two events simply did not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. Not only can it be a source of disappointment and sadness, but if we don’t treat ourselves kindly and with compassion, it can lead to self-recrimination and be a source of terrible guilt.

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.

My heartfelt wish is that people will become educated about what life is like for the chronically ill so that, some day soon, we can say that these are six uncommon misconceptions.

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her new book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Until forced to retire due to illness, Toni was a law professor at the University of California—Davis, serving six years as the dean of students. Her blog, “Turning Straw Into Gold” is hosted on the website of Psychology Today. She can be found online at www.tonibernhard.com.

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Another Shopping Tale of Woe

Following my difficulties with Tesco, a couple of weeks later a friend of mine wrote on Facebook of her recent experience at her local ASDA and she has kindly said that I can reproduce her story, so here it is:

Breaking news:

ASDA – Old Kent Road, South London – assumes ANYONE with a ‘granny’ trolly (2 or 4 wheelers) is a shoplifter.

Store security guards have been instructed to stop and demand that ALL customers about to enter their store are required to leave their own ‘granny’ trollies at the entrance.

However, customers pushing buggies/prams & those driving mobility scooters – with or without storage facilities – are free to enter unchallenged (obviously low income parents of young children and the mobility restricted are all salt of the earth honest people, unlike them there OAPs out for a bit of grab & dash!)

When asked why this policy had been introduce, the “People Service Manage” at ASDA explained that “using a granny trolley was the 2nd most used method of shoplifting” (the 1st being Self Checkout Tills)

So, if you know of any lil’ ol’ ladies wanting to do a bit of shopping, tell ’em to go to Tesco cos ASDA’s on to their thieving li’le game!!

After all, Every Little Helps ; )

Another case of discriminating against disabled people!

My friend, who is also disabled needs to use a trolley for shopping as she cant carry heavy items. To suggest that she, and others who need to use these trollies are less than honest is quite disgraceful!

Come on ASDA – please re-think this daft and insulting policy.

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The Power of a Tweet

When I posted my ‘Why the Difference?’ blog it was also sent as a link to my Twitter account.

I soon got a lovely thank-you from M&S, closely followed by message from Tesco asking which store I had used, and subsequently inviting me to contact the store manager when I’m next in store.

I will be doing this, and blogging what happens. But I’ve not yet ventured out shopping this year, the weather has put me off going anywhere and I’ve got a Tesco delivery coming later this week, so if that is missing any items I’ve ordered, a not uncommon occurrence, I will be forced to go out to Tesco.

So, watch this space………… update coming soon.

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Why the difference?

This week I’ve had two very different shopping experiences in two major store chains.

Food shopping is never my favourite job, I order on-line as much as possible and I try to avoid busy and crowed times. Usually my shopping helper is my neighbour’s teenage daughter, she has Aspergers, and is a good helper, her traits mean that she knows my routine and remembers it. So shopping without her isn’t easy, but her Mum is ill and needs her daughter at home right now.

So, off to Tesco’s on my own for a quick shop for perishables. I use a local big store, which does have one motorised buggy with a large basket, but even if I use it I still can’t reach items on low or high shelves, so I still need a helper. Also, even if I can park near enough to stagger to customer services to collect the buggy, it has to be fetched from another part of the store, which can take up to 10 minutes, I can’t stand for that that long and there is not seating available. The buggy used to be kept by customer service, and I could sit in it it whilst the key was found. For some reason I could never fathom the key was kept somewhere other than the customer service desk! When the buggy was moved I did email the manager, explaining that the new arrangements would make it difficult for both myself and other disabled people, but got no reply. That was a foretaste of my shopping experience.

When I got to the customer service and asked for an assistant to help me shop, the first response I got was; “Why can’t you just use the trolley that attaches to a wheelchair?” When I explained that it only worked for manual wheelchairs (which I knew from trying previously) I was greeted with a blank stare. So, I asked for the assistant again, and with a big sigh, the woman on the desk sent a Tannoy message out, I was glad I was sitting in my wheelchair as it took over 10 minutes for someone to come, and then the man who arrived looked at me, spoke to the woman on customer service, and walked off, without explanation! A few minutes later he came back, and grunted he was ready to help.

My assistant was a man in his late twenties, whose first language was not English, and whilst I’m used to employing people from many different ethnic backgrounds, having managed nursing homes for over 20 years, I reckon my communications skills are pretty ok, but the guy helping me seemed to not understand me at all. Whatever I said I needed, he didn’t seem to know what it was, at the sandwich counter he didn’t know what a wrap was, and at the sushi bar picked out salmon when I asked for prawn, similarly he didn’t seem to know what Brie cheese was. For other items, he didn’t know where they were in the shop or was similarly puzzled as to what they were. Also, when he took something off the shelf, he didn’t check with me if it was the right item, so I had to constantly ask to check he had picked what I needed.

I was very glad when we got to checkout, where he packed everything well. On the way to the car I asked the man what training he was given, but he didn’t answer, just shrugging his shoulders. I don’t think I was an usual customer in terms of my shopping, I had a list, stuck to it and was as systematic as possible. But somehow nothing was quite as it should be. I felt as if I had been an inconvenience, that my helper would rather have been doing something else, anything other than working and assisting a customer.

Just a week later, 5 days before Xmas, I did my final shop, this time at Marks & Spencer at Kew retail park. My treat for holiday. What a different experience. Although customer service was busy, another assistant came up to me and asked if I needed help, no sooner has she left to go and find someone, another assistant came up to me and asked if I needed assistance. Just as she was speaking to me the first assistant came back and introduced me to my helper. She was probably in her late thirties, English was not her first language, but she understood exactly what I was saying.

The shop was really busy, but nothing was too much trouble, she checked exactly what I needed and found it, often suggesting I wait at the end of an isle so I didn’t need to struggle to get through the crowds. She doubled checked with me that everything was what I needed and even suggested other things I might like to try. There were two things that seemed to be out of stock, one of which was my favourite cherry juice. So, my helper went to the stock room to try and find them, but thoughtfully put an alternative, which was running low in my trolley to ensure I got a fruit juice I liked. The cherry juice soon arrived and we were off to checkout. Again, nothing was to much trouble, I was asked how I wanted everything packed and she made sure no bag was too heavy. There was no need to ask about customer service training, I couldn’t have had more assistance if my helper had seen one of those posh personal shoppers you see on TV at Liberty. I tried to give her a tip, but she wouldn’t accept it, saying it wasn’t allowed. So this is one way I can thank her for her excellent customer service.

Why was there such a difference in the two shops? Was it training, or the lack of it, was it attitude, or just gender, the woman being the more attuned to another woman’s needs. Was it that unsaid word ‘class’?

Well, for what it’s worth, I think it’s a combination of all of those things. As in any organisation, attitudes permeate from the top downwards. I’ve shopped at both Tesco and M&S for years. Even when I was able bodied I was well aware that each of those shops treated customers very differently and that difference is stronger and starker when a customer needs a little extra help to do any everyday task.

I wish I could afford to shop at M&S every time, but DLA does stretch to that, it’s definitely a treat and I cannot buy everything I need there, So I’m forced to shop at Tesco or Sainsbury, but a trip to my nearest Sainsbury about a month ago did not inspire confidence. There is no other large supermarket within reasonable travelling distance.

So I’m running out of options, I have to accept what is begrudging and what, in different circumstances I would not. Just because I can’t be totally independent. If I were back at work, and something similar had happened to a client I would be the first one trying to sort things out. Calling the shop manager, trying to explain how staff should have behaved differently. But, for me, there are more important battles to fight, more urgent things to do, which take up my emotional and physical energy.

Maybe Morrison’s will open a new supermarket in west London, but until then, I’m going to be putting off doing food shopping as much as possible.

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