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 · HEALTH · MONEY · ORGANISATION · WORK

Everything!

January 31, 2024 Debra Smith1 Comment

Bloganuary writing prompt

What’s the thing you’re most scared to do? What would it take to get you to do it?

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Since becoming ill, I seem to be scared of doing almost everything alone these days, except work because that can be done online from my home. Now that would be a major problem, if it weren’t for the fact that I use a wheelchair meaning that there is always someone (normally my partner) pushing me around.

Older man pushing lady in wheelchair side a pool in front of a hotel building — Photo by Rollz International on Pexels.com

And what would it take me to do things?

Well that is fairly obvious to anyone that knows me because …

I can be stubborn, but this also means that I am fairly determined.
Talking to people has never been a problem for me as I am very extrovert. Therefore, I would set about making contact with people who could help me do the things that I still enjoy. I might even employ a personal carer.
Suddenly, I would just have to start using buses, trains and if necessary taxis to get around.
Probably, stop my job because of all the things that need arranging. Oh, and maybe employ a professional chef to prepare my meals as I do like very good food.

Selection of food snacks — Photo by Nicola Barts on Pexels.com

So nothing is impossible, but it does remind me how much I rely on my partner. Some things would be much better, because much of my anxiety comes from not doing things that might upset my partner (who is an introvert, control freak and wants to do everything himself).

I’d really rather not consider the possibility, but what will be, will be and I will just adjust my life accordingly.

Female arm with thumb up on one hand against white glowing background — Photo by Donald Tong on Pexels.com

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 · 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 · PETS · SLEEP · WEATHER

12. What snack would I eat right now?

January 13, 2024 Debra SmithLeave a comment

Clock and sleeping person behind duvet/bed covers — Photo by Acharaporn Kamornboonyarush on Pexels.com

This prompt is not really appropriate for me “right now”, as despite what the clock in the picture shows it is past midnight, I’ve had my chocolate biscuits and “Sleepy Tea” and now my final tasks are scrubbing my teeth before going off to bed to sleep with the cat. It’s been a long day today and I will enjoy snuggling up under the duvet to keep warm while the weather is still too cold for me. I’m looking forward to a long sleep – something at which I am very good!

Bloganuary · CHALLENGES · HEALTH · Multiple Sclerosis · WORK

11. Today’s prompt

January 11, 2024 Debra SmithLeave a comment

Daily writing prompt

Come up with a crazy business idea.

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This will be quick as I don’t really have any stunning “crazy business ideas”. Probably the most “crazy” idea that I had and have already done and moved on, was refusing to retire on medical grounds from my previous job and instead setup my own business as an IP attorney having never worked outside the safe environment of an existing large company/organisation and doing everything myself – manager, finances, Patent Attorney and paralegal all rolled into one. Not very interesting but the best I can offer.

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.