So what’s been happening end February – March 2024?

April 29, 2024 Debra SmithLeave a comment

Well not much good really!

My parents visited us at the end of February (21 Feb. – 4 Mar.), which went OK but was unfortunately interrupted at the end Feb./start March by a call from my medical insurance company asking lots of questions with no forewarning. This led to my dad (82) having to hold the phone by my ear as I desperately tried to look up information on my computer with him eventually saying that he needed to close the call so he could rest his arm. The person I have been dealing with had left end 2023 and the new lady, who seemed to know nothing about my case, just decided to ring to find out everything all over again! It was quite ridiculous and left me in floods of tears and quite distraught for at least a week thereafter, as I was left with the impression that I was trying to deceive them. I wrote an e-mail saying that I had been left very upset and asking that in future they should send me an e-mail before calling giving details of the information that they required.

In March I received an e-mail apologising for catching me unawares and saying that this was not their intention, but they would hold any March payment until I provided them with certain information which I did although having to wait until the end of the tax year before sending them my tax information. Since then, I have been told that they will pay my March payment as a gesture of goodwill but I needed to immediately send any details of earnings I expected to make in this tax year. I said that my earnings would be nothing if anything until late in the year as I had no new work nor any means of gaining new clients.

At the same time that all this was happening, I was informed by the new manager of the catheter clinic that we have been attending for many years that after my appointment at the end of January (not with my usual nurse) there had been a complaint that in transferring from my wheelchair to the plinth with the help of my partner this had been in breach of their health and safety procedure – there was no fall, just my partner having to help me to stand and rotate to sit on the plinth. This led to 2 rehabilitation therapists visiting our house to see whether I could stand using a “stand aid” (which I knew I couldn’t do you to my height and lack of upper body strength), but these stand aid was delivered regardless and once place or it even the 2 rehabilitation therapists realised that it would be no use in the catheter clinic as it wouldn’t fit under their plinths.

The latest is that we have been told that the catheter clinic is only intended for use by people who can stand up/walk – this has never been a requirement until now, but suddenly they seem to want to limit those who can make use of the facility. I have repeatedly explained (as has my ‘normal’ nurse) that reliance on district nurses who do not provide a specific time for their visit is useless for me, because I do try to carryout work online and often have videoconferences and/or webinars to attend.

Despite what they say, it seems that because I use a wheelchair I shouldn’t be working! Or rather I should be working because disabled people are just scroungers, but only when it suits.

So that is why I have been very quiet on WordPress and just getting on with things and only posting about books that I have read and/or listened to.

Bloganuary · CHALLENGES · FAMILY · FRIENDS · HEALTH · HOUSE · MONEY

Amazed!!!

January 29, 2024January 29, 2024 Debra Smith1 Comment

Bloganuary writing prompt

What would you do if you won the lottery?

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Why amazed? Well, I never play the lottery so winning it is even more improbable than the oft quoted sentence: “The odds show that your more likely to be struck by lightning than you ever are to win the lottery.”

The simple fact is that I’m just not interested in the lottery concept – it’s just boring!

But OK somehow I managed to win a lottery – so let’s put on my imaginary thinking hat. Many have said that they would choose to remain anonymous if possible to avoid all the attention and people asking for a share of your winnings. I agree that I would choose to remain anonymous to the general public. So now I have to think about what would I do with all that money? It’s actually not too hard for me to decide, because I would use a tactic that was used by old lady that I used to know who lived alone and was careful with her money. She decided that rather than die and just leave her money to her grandchildren in her will, she would rather give them her savings now and have them come to see her and tell her how they proposed to use the money – that way she got the pleasure of finding out all the good things that her money was able to provide.

So here is my list:

Put aside a fairly substantial amount for myself e.g. £100,000 – that should be enough to ensure that I could afford the expensive disability equipment that I require/would like (disability equipment is always so much more expensive than people expect). It may even mean that I could sell my house and afford either an already completely accessible and wheelchair friendly home or I could build something that specifically met my needs.
Approach my friends one by one (even those I haven’t seen for ages) and ask them to come and visit me, because I have a proposal for them – that is a very simple solution to the loneliness that I sometimes feel.
All those who do turn up, I would simply ask are there things that they really need and can’t afford. I’d want to know exactly what they were, so that I could reject the merely frivolous stuff.
Then depending upon their need and how much a financial boost would mean to them to achieve whatever they needed – I would give them the money with the sole proviso that they must come and either show me or tell me in some other way how my money has improved their life.
Any money leftover, I would then invest in my “pension pot” to be divided as per my “Last Will and Testament”.

This sounds a little “controlling”, but those that know me wouldn’t be offended because that is how I have always been! It would be nice to say that I would just leave the money to charities, but unfortunately I don’t believe that all charities spend the money they receive to benefit those for whom the charity was setup. So many seem to operate like large companies with large overheads & salaries for their senior staff.

So that’s what I would do with a mythical lottery win. I won’t waste any sleep over it though!

Bloganuary · CHALLENGES · FAMILY · HEALTH

“Where have I felt loved?”

January 28, 2024 Debra SmithLeave a comment

Bloganuary writing prompt

Can you share a positive example of where you’ve felt loved?

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This will be a quick answer, because I can’t immediately think of “a positive example of where I’ve felt loved?”. At least not recently, as I am now more of a burden than someone that even I would love!

In my youth and even into my early 30s I have felt loved by my parents and my partner, but as I say, since I have gradually, slowly become ill and less able to do things – I feel rather more of a burden than someone who is “loved”. I had and still have lots of friends, but I don’t think that “love” is really a term applicable to friends.

Bloganuary · CHALLENGES · FAMILY · FESTIVALS · HEALTH · HOLIDAYS · HOUSE · Multiple Sclerosis · Nature

Where can you reduce clutter in your life?

January 27, 2024 Debra Smith1 Comment

Let’s start with the “physical” clutter and by that I mean all the medical aids that have been provided and/or bought yet no longer required.

I am fortunate enough to live in a house with large rooms, but that has the disadvantage that the medical professionals with whom I interact and to have (with the best of intentions) provided me with lots of pieces of equipment. Some I use almost every day, but others just sit in a corner with no way to return them easily, as they have no identifiable labels giving details of who it was that provided them.

There are also the eBay purchases that I just can’t get rid of no matter how hard I try – Freecycle, eBay etc.

The motorised wheelchair that is just too small for me and came as an added extra with the electric stair climber that is still in use for my parents house in France where there are both stairs to get into the house and internal stairs.
The manual standing frame that I bought of eBay to try and practice standing, but is hard to operate/quite uncomfortable and since the purchase of my standing wheelchair just before Christmas is simply no longer required.
The lightweight wheelchair that I bought years ago and sits in our shed. At the time it was great, but it doesn’t fold easily and again is simply not required any more.

I could go on, but I think that is quite enough for the physical objects!

To expand the concept there is also the “mental” clutter that is part and parcel of my condition. The sudden depression and uncontrollable crying and feeling useless – but I don’t want to dwell on that as it is self-perpetuating!

Considering my limitations I shouldn’t really complain about my life, because I have been very lucky and still enjoy an awful lot of opportunities that I have. Going to festivals, visiting relatives both in England and France and (although I haven’t done it for a long time) having the opportunity to get out and visit the local Arboretum.

So, let’s just put on a happy face and smile, smile, smile.

Bloganuary · CHALLENGES · CHRISTMAS · FAMILY · HEALTH · Multiple Sclerosis

14. In what ways do you communicate online?

January 18, 2024 Debra SmithLeave a comment

Primarily via e-mail – my preference, but otherwise I tend to use the online communication channel preferred by the people with whom I am talking (albeit virtually). There also many different choices available and I tend to use most of them, except where their operation or lack thereof are not available to me because they either have security measures that operate so fast that I just can’t access them in time due to manual dexterity difficulties and the need to use voice dictation software rather than typing on a keyboard.

When I want to engage in a ‘proper’ conversation with those distant from me, including my parents, I use Skype for my personal contacts. It’s just nicer to be able to see them whilst speaking naturally. And then for special occasions I tend to use Zoom as we can group together and it just provides a different “party” feel.

I deliberately restrict posting to Twitter (now X – stupid name) for things like petitions and/or keeping up-to-date with the activities of the various ‘health related’ contacts that I have made since being diagnosed with Multiple Sclerosis (MS) and using a wheelchair.

Bloganuary · CHALLENGES · FAMILY · PETS

15. What is your favorite animal?

January 15, 2024 Debra SmithLeave a comment

Pet rats climbing over woman's rollneck jumper with her smiling — Photo by Xeniya Kovaleva on Pexels.com

As a juxtaposition to my previous post on my WordPress ‘memory jar’ site – I have also had a number of pet rodents as I was growing up, from mice to gerbils to my pet rat “John” (the name gives you an idea of my age at this point) and finally hamsters whilst at college. John rat was one of my favourites and a rescue from my mother’s school, where he needed too much attention as his teeth would not grow straight and hence had to be cut regularly.

So yes, I love both rodents and their nemesis cats – who knew!

My current cat “Charlie” likes mice and rats – he doesn’t kill them and/or eat them he just likes to “play with them”. Although I love the sound of birdsong and birds in general, they just don’t have the intelligence of mice and rats. I am particularly impressed by the ‘clever’ ways that mice just seem to run rings around cats and how canny they can be. We’ve even had a mouse (caught by a previous cat) who managed to hide underneath his food bowl – now that’s smart!

The problem with Charlie is that far from removing mice from our home, we’ve had to resort to mouse traps, because he is forever losing them. So unlike my parent’s cats in France where they really noticed the increase in mouse population upon the death of the last of their 2 cats, we have the opposite problem. I can’t help thinking that we have more mice than we would have if we didn’t have a cat.

Bloganuary · CHALLENGES · FAMILY · PAIN

13. Think back on your most memorable road trip.

January 14, 2024 Debra SmithLeave a comment

Now this will be an even shorter than the equivalent one that I posted on my WordPress ‘memory jar’ site, because it is much earlier in my life and so my memories are even more vague and probably largely shaped by what I have been told by my parents.

For my birthday, between the ages of about 5 to 10, we used to stay every year at a farmhouse on Dartmoor in a village called Poundsgate (I think). However, one of my clearest memories about these holidays is the time when my father did his back in. He had been chopping wood (no problem) and sitting chatting by the fire when he got up to put a new log on the fire – as simple as that. He bent over, something went and he just couldn’t stand up again, he was in agony!

Flames & wood burning — Photo by Nuh Isa on Pexels.com

Eventually he was helped to lie on his back on a sheet of wood. Next thing that I remember is my mother lowering the backseats in our car so that my dad could be lifted into the boot lying on a sheet of wood. The holiday was called short and we were rushing him home from Devon to Southend in Essex (a large proportion of the South of England). We drove hellbent off Dartmoor until we made it to the M5/M4 and my mum was speeding along the road. Years later she admitted that she hadn’t realised the emergency phones on the motorways in the UK were spaced about 1 mile apart, because they seem to skip by so quickly!

My dad underwent some very expensive physiotherapy & massage sessions on his back, but it had never been the same since. So, dad in back of car writhing in agony, Mum alongside me in front driving as fast as she could and me just being scared and not really sure what was going on. Yes, you could describe that as my most “memorable” road trip but for all the wrong reasons!

Man lying over chair being treated for back pain — Photo by Stephanie Allen on Pexels.com

Bloganuary · CHALLENGES · FAMILY · HOSPITAL · TOYS

10. Describe an item you were incredibly attached to as a youth. What became of it?

January 11, 2024 Debra SmithLeave a comment

Sorry for the delay, but having promised a second post yesterday on my “memory jar” WordPress site here it is.

Black Scottish terrier dog on lead against white tiled, medicinal background — Photo by RDNE Stock project on Pexels.com

I have chosen this photograph specifically, because it shows a black terrier dog against a medicinal tiled room and features both aspects of my second post in response to this prompt.

When I was a very young child (again), my grandfather was in hospital having been run over and having to have his legs amputated. Now in the late 60s/early 70s, hospitals were quite different and visiting with children was just not allowed. Every week or so, my parents used to make the journey from Southend (where we lived) to the hospital at Black Notley – a 2 hour+ journey and take me with them. However, I was too young and was not allowed access to the ward, but instead would spend the time while they were visiting my grandad in the nursing station in a separate room. During this time I was so well behaved that I believe I was allowed to see my grandad just before he was discharged from hospital and he gave me a soft toy of a black Scottish terrier dog that I rather unimaginatively named “Scottie”. My toy dog looked similar to the live dog shown in the picture above and I thought it appropriate at the dog shown in the picture appeared to be sitting in a medical setting i.e. white tiles & clean floor.

As I have already described in the post on my “memory jar” WordPress site, my parents now live in France and are trying to clear out their loft containing lots of my soft toys. At the end of this year they brought over a selection of the soft toys that I had asked them to keep when they donated the majority of them to the grandchildren of local neighbours. I hadn’t seen him for years (40+ perhaps) but he still looked in pretty good condition and so now he is back in my home again.

I wanted to keep him, because he was the only reminder that I have now of my grandfather, who died when I was about 5 years old. He is buried in the graveyard of the Little Maplestead round church in Essex, which is where my parents lived for many years having renovated and extended his house by buying the house next door and reconnecting them together.

FAMILY · HEALTH · Multiple Sclerosis

A different wheelchair makes a big difference

February 5, 2023 Debra Smith4 Comments

via A different wheelchair makes a big difference

This is taken from the “THINK IN DECIMALS” WordPress site and I really am quite jealous, because I would love to go and get my NHS wheelchair augmented by something that was actually comfortable and I could use to push myself around, which would help my rather pathetic arm strength. Leg strength is much less of a problem due to my assisted exercise bike, which I tried to use almost every day.

FAMILY · HEALTH · HOLIDAYS · PAMPERING

What to do about the bed in France … ?

February 10, 2020February 10, 2020 Debra SmithLeave a comment

❓🤔😴🥱🙄💡🤗✅

After the travails of Christmas bed-wise, Kevin decided to keep a lookout on eBay, Gumtree … to see if he could find a similar adjusting bed or at least a bed frame that would accommodate adjusting units like we have at home. As this type of arrangement is much more common in Europe (France, Germany etc) my dad was also keeping an eye on what was available near to them. As is always the case, one morning my dad sent an e-mail identifying the type of bed we were looking for listed on eBay UK and it was located in Swindon! Kevin set to work having several e-mail exchanges with the seller, who was not prepared to let him view the bed or agree a “buy it now” price. So we waited until the auction was nearly finishing, Kevin placed his bid, was the only person to do so and so we got it for the minimum price. We had no idea about what we were getting condition wise, as the pictures on eBay were not very helpful, but off Kevin went to collect the bed, which fortunately fitted in our car. See photos below for what we got …

Mattress on one bed removed to show adjusting slats

So stage I the beds are transported to our house. Kevin fitted the whole ensemble into our car! Bed fame, 2 mattresses and assorted electronics. Not perfect but pretty good for £80.

The mattress covers (although looking good on top) were shot on the bottom. So both were immediately removed and chucked away, leaving only the green, foam mattresses exposed – As you can see, they obtained Charlie’s “seal of approval”.

Now to stage II and Kevin set about scouring the Internet for the best price he could find for new mattress covers (each bought one at time so that we could check the quality). Closely followed by an order for two sheets – and now the bed was ready for testing by us humans! Not that we don’t trust Charlie’s judgement, but he does seem willing to sleep just about anywhere. So, popcorn at the ready and we had decided to start the ‘night test’ in luxury by watching a film on TV (sitting reclined in bed) before what we hoped would be a good night’s sleep.

Me sitting reclined in bed, waiting for the film to start.

Kevin did join me for the film, but someone did need to take the photograph and although the doors were shut before Kevin joined me. As expected, as soon as the film finished, I laid down to sleep (with my legs raised a little), whilst Kevin tidied round and fed the cat before joining me.

CONCLUSIONS: The bed worked fine, although we both agreed that the mattresses were very firm and that some more padding was required by means of memory foam mattress toppers.

By the time that my parents arrived from France at the end of January, we had collected together most of the bits for the bed and we now needed to see how much they could fit in their car (alongside collection of a grandmother clock). Actually, it was quite a lot and they left with one mattress, corresponding mattress topper + the electrics for the raise space/lower mechanism.

Now Kevin could stack the remaining parts of the bed upright at the back of our living room and we spent a few days living ‘as normal’. We had all discussed removal of the horrible fabric wrapping around the frame, which needed to be done next before we could decide how to proceed. There were loads of staples holding the fabric in place, which Kevin laboriously removed to reveal the horrible construction that lay below – we have no idea (again) of what to expect …

I suppose it would have been a bit too much to expect that the wooden side panels would be beautiful, smooth wood that could just be varnished! However, the crack would need fixing first with lots of wood glue & clamps. Before removal of the fabric, we had considered applying a thin layer of wood veneer, but after looking at the rough construction we were faced with, we have now started thinking about the possibility of using self-adhesive, vinyl planks of ‘fake wood’ and all agreed that this will provide the best finish.

Last stage will be our next trip over to France in March, when we’ll take over the remaining parts of the bed ready to be assembled in my parent’s house. Fortunately, we are arriving in the morning and so Kevin and my dad can have fun all day (if necessary) getting the bed ready for my bedtime. My mum is having a knee operation just before we arrive and so will be having to “keep her feet up”, so while the men are hard at work and looking after us, we will have plenty of time to chat, read, play games & watch TV together.