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Medication madness.

Have you seen the news articles over the months about medication supply issues? The sourcing difficulties for the drugs themselves and ingredients used to manufacture them. Then throw in the import restrictions that are now in play. What does a patient do in these circumstances? Scream in frustration; that’s what. Maybe cry too.

It has happened to us before. You get your repeat prescription and the pharmacist informs you that unfortunately they haven’t been able to get the usual brand but there is an alternative in your bag of medication goodies. It’s the drug equivalent to the supermarket substitution but hopefully for the same item. No one needs to be dispensed antiseptic cream instead of blood thinners.

Joking aside, what happens when the medication is critical and you can’t get it? When my husband was first prescribed new heart tablets we had problems getting them. Not ideal but at least he hadn’t actually started taking the drug. The pharmacist managed to fill the prescription in batches. It wasn’t really an issue but it should have set off warnings for the future.

We had been told that he couldn’t just stop taking them without prior discussions with the consultant. Taking the prior issue into consideration I placed the repeat prescription early. Low and behold they were out of stock. I pop back a week later. Still not available so I asked what we should do. You need to go back to the prescribing doctor. Great. Now to try and speak to the consultant. That is never a walk in the park.

medication madness is enough to make you need a wine

Luckily for me I was able to get email details for all the departments. So I send an email apologising for reaching out and explain the situation. Could he give us some advice or prescribe an alternative. If not was he OK with my husband coming off the drug. Radio silence. Tumbleweed. What do we do now? There is only enough medication for another few days. I call the cardiology department and leave a message.

They call my husband. Even though in my message I stated I was his carer and wife, they won’t talk to me. Why? I’ve completed all the forms, more times than I care to remember. He tells them to ring me. They do and I explain. I’ll email the consultant and get back to you. At the time of writing we are still waiting but luckily the drugs arrived with the pharmacist. So now we start the process again.

While this was going on with have a similar issue with the new Parkinson’s medication. The first prescription is nearly used up. We haven’t seen the specialist and if he is to stop them he has to ween off them but we don’t have enough to do that. I can’t order them as they have yet to be put on his repeat prescription. Why people? So I reach out to the Parkinson’s nurse.

I’m not sure if one or both of us was having a bad day when she called. I came off that call angry, upset and down right frustrated. I actually felt like I was an inconvenience trying to get some answers about the medication, results and a few things my husband wanted to know. It’s hard dealing with these things when you can’t be totally sure what drug is or isn’t causing the problems.

Now we have to wait for the paperwork to go through to the doctors and the prescription to be up dated. I can’t see medication supply issues being resolved overnight so it’s just one more thing to remember to stay on top of. I’m sure the pharmacist will get fed up with seeing my face at the end of the day when I pop in on the off chance the drugs have arrived. I must remember to smile sweetly. Ex

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Baby’s 1st Christmas

New sights, sounds and smells
Christmas Carols and jingle bells
Decorations, lights and the tree
All new things for me to see.

The bearded man dress in red
Who won't appear 'til I'm in bed
I hope he knows that I am here
For this is my First festive year.

On good authority I am told
It's a day for both young and old
Ideally outside would be white
For a friendly snowball fight.

Back inside with cheeks all rosy
Family and friends, snug and cosy
Party games and lots of fun
A happy day for every one.

Parcels wrapped in paper bright
Under the tree is such a sight
Smiling faces filled with glee
Oh are those gifts all for me?

Turkey followed by Christmas pud
These new foods taste so good
They have filled my little tummy
Can I have a nap now please mummy?

Party hats, crackers and jokes
Meant for all different folks
A special family Christmas Day
Shouldn't be spent any other way.

Grins, cuddles and sloppy kisses
Lots of love and special wishes
Sent from your little girl or boy
Hoping your day is filled with joy.
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Being a Carer. Is it for you?

Do you think you could step up and be a carer? To take on the extra roles that the person can no longer manage on their own. Shoulder the extra responsibilities. Be the additional help they need to live life like they used to because the condition they have been diagnosed with is taking away some of their independence. All the while, still juggling everything you used to do. Could you? Would you? Should you?

As a career choice I’ll throw my hands up and say no. Sorry no way. It’s not for me. In family life, when I was younger, I had a little taste of carer duties. I used to check on my Nan daily, grab her shopping. Years later when my Mum was terminally ill I had more things to do for her. The thing with those situations was the responsibility wasn’t wholly on my shoulders. Now, its a different ball game. Tag I’m it.

I don’t think everyone could. Maybe that is more they shouldn’t. Their personality traits are not suited to the carer role. You need empathy, tolerance, patience by the bucket load and a shed load of humour. A screw lose perhaps. I didn’t think I had the traits either. Ok yes I have the loose screw. So is it more the person that I find myself being a carer for? My husband. I chose him or was it he chose me? We made those vows. In sickness and in health.

Honestly I swear there are other members of my family that there is no way on this earth I could look after. In the same vein I wouldn’t want them looking after me. It just wouldn’t work. If that happens make my end quick. Same for friends. I’m not sure my husband is carer material either. He is more, oh just get on with it. Why is that? Generation? Up bringing? His DNA? Probably a mix of all of the above.

Being a carer is not for everyone

How the patient is, I also think, has a massive impact on being a carer. My husband is a pretty good patient. Chilled. He takes everything in his stride. Doesn’t dwell on it too much. Rolls with it I guess you can say. Don’t get me wrong, he can be infuriating. He doesn’t always listen to general advice. He knows best. I question if that is a man of a certain age trait. The cantankerous old git stage.

The thing I worry about is being able to mask what I am feeling. I used to be able to school my face but not so much these day. So when I need to be the pompom waving cheerleader providing the motivation yet inside I am processing, stressing and feeling tearful that is hard. That is the carer duty that sucks. When you are shouldering it all but all you want is for someone to hug you and tell you it will be ok. That you have got it.

That is probably why some people won’t take on the role. The weight of the responsibility. Being a carer can be a fulltime job. Not everyone wants to give up their freedom. I get it, I do. You need to go into the role with your eyes wide open. Not everyone is that lucky. It lands in their lap and they just have to go with it. We don’t always get the choice.

Some carers are only required short term. If you are lucky it is a part time gig. Me. Mine is going to be the long haul. A downwards spiral. At the moment I still have a lot of freedom. I work, have time for my side hustle; the carer role is more supervisory. If fate is kind it will stay that way for a long while.

If you find yourself faced with this path. Don’t feel bad if you say, sorry not for me. If it lands in your lap and you are struggling. Ask for help, don’t try and shoulder it all alone. Never forget you are doing your best and that is all that can be asked of you. I am proud of you. The person you are caring for loves you. That is all that matters. E x

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Being Kinder

I’ve been sat here looking at my screen on and off for a little while waiting for that flash of inspiration. That moment when the brain cells are kinder and the jumble of thoughts in my head finally get themselves in order and fly out of the tips of my fingers. Sometimes the tangle is too great and I start something and I find I’m crossing too many subjects and I have to walk away until I can unpick the mess.

Gosh reading that back makes me sound nuttier than I actually am. Maybe I’m actually that mad and I don’t realise. Please don’t hold it against me. I suppose that is the great thing: how different we all are. How we process and manage situations differently. Some people hold it all in, others over share. Who’s to say what is right or wrong. Pass judgement. I know I’m not that person. I’m far from perfect.

Recently I stumbled across a few social media pages, one in particular, that has had me laughing. The person writing it has a no holds barred style that I love. She covers things that, I guess, people of a certain age encounter but may not have the courage to vocalise to the people closest to them. One post hit the nail on the head for me. She was talking about learning to love all parts of yourself. Being kinder to ourselves and others. That’s something I think we all need to be better at.

Media for years has given us this image of how we should look. Guidelines to how we should behave. We must be trendy. Fit within the masses. I have never been comfortable with that. There is no way I’m buying a brand of clothes because it’s all the rage. Most of all, I’m never going to be a supermodel. This body was made chunky and no amount of exercise when I was younger made much difference. Sure I toned up but stick thin was never in my future.

Are we not more than our physical appearance anyway? The way we treat people. Our morals and manners are just as important right? I’ve read stories of people suffering from Parkinson’s not wanting to go out because their appearance has changed so much and they’re no longer comfortable. That makes me so sad. Why can’t we be kinder? Not stare at the arm tremors? Not make a big thing about the lack of coordination.

It’s not just the staring. I’ll throw my hands up and admit I’m not as fast moving about as I was. Part of that is I don’t want to be rushing at breakneck speed. So when someone is in your way and not moving fast enough, I beg of you, be kinder, as that will be you one day. Maybe not suffering from a debilitating illness but just not able to move as fast. Heck maybe not wanting to. That moment when you realise you have missed so much by rushing and not taking in the environment around you.

I put it to you, if that person in front of you, who isn’t as fast as you, is going to make you late. That is on you not them. Maybe you should’ve left earlier. Made allowances for delays. Set the alarm earlier so you could have a coffee at home rather than having to queue too long at the local coffee shop for a take out.

My husband, I’m sure, is not mingling with people as much for a lot of the above reasons. I won’t let him shy away. He is still a valuable part of society even if some people secretly have other views. Just because he can’t carry you a full pint from the bar that is no reason not to meet him for a beer. Be kinder people. You don’t ask for it but one day it might be you. E x

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Unreliable Transport.

Why is it so hard to get transport? To be able to get from A to B. If your mobility isn’t great why should you be penalised? Have to plan so far in advance and then get let down by companies. Sorry this isn’t meant to be a rant but recently this is becoming a problem which I fear will only get worse as the winter months take hold.

Lets just say you loose access to your car. It’s in for a service. The powers that be get their way and once you reach a certain age; instant revoking of your license. How will you get about? This is no way about politics. Not on this site! You find yourself carless. Maybe you just want a night out and be able to have a drink or two. Have you given this any thought? I have. I have a license but don’t like driving so am used to public transport but trust me I wouldn’t rely on that for appointments.

Our local bus service is very hit and miss. You can’t plan a journey as the information isn’t reliable. Use our app to plan, the company tell you. Please don’t. The bus that is showing as running may not be. The one that is cancelled, could well turn up. It’s a joke. The other app that shows the buses in real time can make the buses vanish in front of your eyes. There could be diversions that you don’t know about. Temporary lights, that I promise you, spend more time on the routes than the buses.

You can get part way to where you need to be but then there is a long walk? You are having a bad day and that distance is just too far. You can’t always rely on family or friends. People have to work. Have other commitments. Trains? Maybe a bit more reliable than our bus service but again you have to get to and from the station. The same the other end.

Recently we had a GP appointment. It’s not a great distance but husband was having a bad day so I booked a taxi from our usual company as the surgery has no parking. I didn’t ring and say I need it now but gave them several hours notice. Made the point of telling them where we were going.

Got the text to say the car had been dispatched, then another. We head downstairs. I track the car as we are cutting it fine to make the appointment. The car isn’t moving so I call the company. Control call the driver. He isn’t coming!!! Well thanks for that. I can only assume the journey wasn’t worth his time. That’s bad form when you knew it was a doctors appointment.

Alternative transport

This weekend we were meeting up with family at the pub by the river as it was a nice day. That was the plan. Call the cab company first thing in the morning for a mid afternoon transport. Nope. All drivers are on airport runs. Sorry Madam. That wound me up. Do not call me madam! Called another company and got the same thing. Too far to walk for husband. No other option but to drive and hope we can park. As it happens the plans got cancelled.

For us local companies are loosing trade. We are not going out as much as it’s too much of a risk that we can’t get home. Locally hubby will walk there but can’t usually manage both ways. What really worries me is how house bound we will be in the winter. Husband doesn’t like driving in the dark. I won’t. We can’t rely on cab companies so what options do we have? Magic carpet? My friend will say my broomstick!

How people survive in more rural areas I have no idea. The local MP promises to address the poor bus service and improve transport but nothing seems to happen. Cab companies who were desperate for us to support them during covid now only want the long runs. If it wasn’t so frustrating I would laugh and buy us matching skateboards. If you see a white haired female, struggling to balance and laughing hysterically…. it’s probably me. Move out the way, I most likely can’t stop. E x

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My Letter Writing Skills

It’s not often a letter makes me snort with laughter but today it did. It shouldn’t have. I should’ve been raging. I’m amazed with how low my bar is set when dealing with institutions and the people that represent them. More often than not I start to question if my ability to communicate is impaired.

When I compose correspondence, I tend to keep it to the point and in basic English. I only try to impress people with long words when I’m seriously annoyed with them. It does happen. The other time is when someone has treated me like I am dumb. I’ll admit I can be but no need to put me down to get your point across or make you seem more educated.

So today I received a reply from our local council in response to my emailed letter asking them to consider us for a reduction in council tax. My original letter stated about my husbands Parkinson’s diagnosis and how due to the size of the property we are unable to customise any room to help with his needs. It also highlighted that we are unable to improve access to the property.

I would ask you to guess the contents of the response, but Christmas is fast approaching, and you might still be guessing when it’s the last shopping day. Please don’t have a hot drink to hand as I fear you will spit it out. Here goes. ‘In order to verify (husbands name) is suffering from a severe mental impairment….’ What now? Seriously. I state Parkinson’s and you get that! How?

Letter wishing I was here

Originally I wasn’t going to tell my husband but I did. He was stunned. I did joke and say on occasion I wonder if they were not wrong. How can you explain that response from the council? Are the staff not aware of what Parkinson’s is and the main symptoms and effects on a person? I’m not sure I can assume they misunderstood my letter. It was pretty basic and to the point. Also I would like to point out it was not written in Klingon like I have joked about previously.

Sitting here I can not for the life of me figure how that leap from one to another happened. Did they search it online and AI misfed them information? Did they do ip, dip, dog….. and put a pin in a list of items that they allow deductions for? If a member of staff has no idea what an ailment, illness or diagnosis means, does the system not have a process in place where someone finds out, or the request is referred to a more experienced member of the team?

Now don’t tell him but I fear my husband is correct with his theory. They do that so people don’t bother to take the claim further. I’m not going to. If they can get it so wrong from the first point of contact I very much doubt anything else would be smooth sailing. I wasn’t hopeful anyway. As the Parkinson’s nurse said, it couldn’t hurt to try. I’m just so glad I emailed rather than paying for postage!

Again this is another situation to file under the heading you couldn’t make it up. Maybe I’m wrong and I should fight it but I suppose I’m aware that my energy and time is better spent on battles that I’ve a better chance of winning. This is not one of them. So their letter will be shredded and given a better job….in the compost. So from me and my fruit loop husband we wish you well. E x

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Third Time Lucky?

Do you believe in the power of three? The old sayings of ‘third time lucky’ or ‘things run in threes’? I can’t say I run my life by it, but the things running in threes certainly seems to happen in my life. Usually the poop stuff. So can I put any weight in hoping that the third time is a charm?

Completely out of the blue we had two appointments arrive from the cardiology department. We knew the path we were on going forward, but using the previous time lines as a yard stick, I don’t think either of us was expecting these appointments until the start of next year. One is for more tests prior to an admission for a procedure. That special number three.

Husband reading the letter looked at me and said ‘This is the last time. If it doesn’t work this time I am not keeping going through this.’ I understand where he is coming from and it is completely his decision. On this I will not fight him. The prior two procedures have not been a resounding success. In all honesty, between them, they solved his issue for a grand total of one whole month. For me the last one was horrendous as I could hear everything. The urge to barge into the theatre was overwhelming.

Is there any more chance that this time will be any more successful? Apart from the third time being a charm that is? Well this time he has been on tablets for a good few months, and these are supposed to make the outcome more favourable. Favourable but not guaranteed. There are other options going forward that are considered after this procedure but that is a path we have also trodden.

Third time is a charm so we can walk here again

That was more successful. It was a more invasive procedure. Apparently not a pleasant one from my husbands tales. Lets just say he used the phrase brain freeze and one hundred times worse. I don’t know about you but that does not sound appealing. When we discussed this alternative with the consultant and we mentioned that last time it lasted eighteen months. His reply astounded me. Anything over a year is considered a success.

Wow, a year is a success. Not setting the bar very high in my eyes. That said, it is a condition that many of us have that goes undetected and has little impact on our lives. So unless it is debilitating does it really need to be corrected? Will husband go for option two again if the third time is not a charm? I think it would be a reluctant decision.

So for now I am keeping my fingers crossed that the outcome, if not favourable, at least lasts longer than a month. Then we will have to sit down with the consultant and see which path husband wants to take. There is always the medication option with all the wonderful side effects. I know my husbands concerns and he will ask my views but as it should be the final choice will be his. I think I know the option he would like but whether that is tabled by the consultant is yet to be seen.

All I can do is be quietly supportive. Offer my opinion when asked and hope the third time will be the charm. A silent prayer may not go amiss, not that I am religious but I have yet to find a four leaf clover. A little bit of positive mental attitude can’t hurt either. My husband is more of a what will be will be person. Gosh I wish I could be more like that. So here is hoping what will be, will be successful. E x

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A Trip to Switch off

Husband and I have just come back from a few days at the coast. Our first trip this year to switch off. My first days off this year at all. Boy did we need it. I didn’t realise how much. We all solider on. Keep pushing ourselves to keep going with all the chores and the usual routine. Not to mention the numerous medical appointments and tests. Sometimes though you just need to get away.

We didn’t go anywhere posh. There was no five star hotel. Certainly no room service. Just a quiet, basic hotel chain. Different walls to look at and time to switch off and relax. No alarm clock. We slept in quite late. Nowhere to be. No rushing. Didn’t tell anyone where we were. It was heaven.

It was somewhere we nip to once a year usually just too get a couple of days away and have a change of routine. There are a couple of nice places to eat very close to the hotel. So we booked tables for those. For once the weather played nice, although the wind did have a bite to it on occasion but not as so we needed winter coats.

I took goodies for breakfast and snacks so we didn’t have to worry about finding somewhere for lunch. Supplies for making drinks. My laptop came too just in case hubby couldn’t get about too well and I needed something to keep me occupied. I don’t do idle hands easily. We parked up and didn’t plan to move the vehicle until we were heading home.

We bused half the way along the sea front then strolled. Last time hubby couldn’t get far but we took our time. Parked our butts on the sea wall and watched the world go by until he was up for the next wander. He made it all the way to the pier. We used to walk there and back and the length of the pier without thinking about it. Not these days. We caught the train along the pier then people watched for a bit. Well hubby was fisherman watching. They didn’t catch anything.

Time to switch off

For me, I did something that I don’t usually do. There was a switch off for all the notifications for my work emails. My out of office went on. I actually didn’t realise how often my phone pinged until I did that. My lap top never got turned on. I took my note book with me in case I wanted to doodle ideas but I didn’t have the urge. We stopped for refreshments. Treated ourselves to fresh donuts. Had a drink or two outside pubs on our wanders. Sat chatting to the locals. All very civilised.

Husband did so much better than I expected. I’m not sure if that was the steroids still helping. Maybe it was just there was no pressure to be anywhere. He could just take it at his own pace. I certainly was in no hurry, I was just thankful to be outside. Don’t get me wrong we weren’t out all day but we managed a few hours. Had a couple of drinks then headed back to the room so he could have a nap before dinner. Oh ok I had one too.

This time we even managed a fish and chip supper which we had been promising ourselves for the last few years. Why do they taste better sat on the sea front? We won’t leave it so long to get away and switch off again. It felt so nice. Even though it was only a few days we both feel more motivated. The batteries have a little more charge.

Don’t get me wrong, neither of us are jumping up and down with excess energy but the switch off certainly has done us a world of good. So if you get the chance to take a short trip, switch off the devices and chill. Do it. You probably don’t realise how much you need to. Trust me. It will make a difference. Most of all don’t feel guilty about doing it. Just enjoy Ex

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Finding my Self Belief

My goodness this year has been a whirlwind so far and we haven’t reached the end of it yet. I wanted to update you on the bigger writing project. Oh boy that has had me pondering, soul searching and stepping outside my comfort zone so much. Digging deep for some self belief. Yet I can not believe how far I have come since I pondered the question Should I follow my dream? at the end of 2024.

That question led to many others, some I have shared with you. One or two I have voiced to a few close friends. However during all this time I have been writing: a lot. Wow I fear I have unleashed a beast. Maybe I have just finally allowed that beast out of its cage to grow legs. Am I excited? Hell yeah. Am I nervous? To the point some times I feel sick, (sorry too much information). Yet I am pulling up those big girl pants, accessorising with self belief glitter and rolling with it.

As this blog hits your screens my first book is being edited. Eeek. Its not actually the book I originally thought would be the first one to see the light of day but one inspired by this blog. The idea popped into my head and I ran with it and it came together quite easily. My belief in it was so great that I was happy to hand it over to a friend to read. After a bit of research I found a editor and reserved my slot with her. Sending my draft over early to stop me from making more alterations than I should. Waiting for feed back is horrendous.

I haven’t been sat about chewing my nails. I have to keep the belief that even if there are rewrites to sections required it will still get to be published. So the groundwork has been laid. Websites have been purchased and preparations to those are well underway ready for them to go live once I can add the last details. With a little self teaching I have promotional posts ready for social media. Logos have been designed. Business cards ordered.

The last few stages I want to be ready to attack so that if all goes well the book is out for Christmas. It might be a tall ask but if I can make it happen in a sensible fashion I will. Some people are going to be surprised when the first marketing posts go live. Unless they know about this blog not many people have been told. A while back I would have said I was worried by their reaction but not now. Its simply I don’t want them denting my self belief.

Self belief in the plot

An author of a social media page and a few novels that I messaged recently replied unexpectedly. She wished me luck and said do it for me and no one else. So I am. Its funny, I’ve never really done anything just for me before and it feels good. Its not for book sales. No plans on getting rich. Hell I’m not aiming to be on any best seller list. I just snorted thinking about how ridiculous that would be. All I want is to hold that first copy in my hand and know I’ve done that. It has come from my hard work. My passion. My dream.

So while I wait for the draft to come back I am going to outline the other couple of books that are floating about in my grey cells. The ones that will have a different style to what I have been working on. How many books are in me I have no idea. I will write until the words don’t flow anymore. If they don’t sell… I’ll be disappointed but its ok. I chased my dream and did my best to make it happen. E x

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Who gets to say what is old?

I treated myself to a trip to the hairdressers recently. My one hour to sit, relax and switch off all whilst listening to the goings on of other patrons. Its amazing what people talk about. Anyhow, I usually zone out but in my Mrs Magoo state I actually looked in the mirror. Squinting I asked myself ‘who the heck is that woman?’ Oh my lord when had I got that old?

Not only did that woman look old she looked tired. Some days I will admit I feel shattered. Dragging myself out of bed to the day job is a chore but yet I still don’t consider myself old. Mentally; certainly not. I still snigger at an inappropriate comment. Always find the double entendre in a conversation, all without trying. Will happily pull faces when people wind me up. All very child like.

Can you imagine my consternation a couple of days later when I was walking home from work when a young male made a comment that at the time shocked me but I still found the funny side of it. I was walking into the underpass when this guy shot past on his bike, just missing me. He yells out woman. A few seconds later as I was about to round the corner another guy on a bike shot past even closer than the first cyclist. Sorry he said as he carried on at breakneck speed.

He then yells out ‘Dude, lucky you warned me or that old b*t*h would be dead!’ Should I be offended? Surprised? I’ve been called worse. Mind you he was probably right as he sure would have taken me off my feet. I suppose to them; late teens I would guess, I am old. Would I have dreamt of saying something like that at their age? Not that loudly for sure. Telling my friends they all laughed; for various reasons, but they know me well.

Old knitted humpties

It got me wondering, who gets to define what is old? I know when you are younger the thought of being forty seems ancient but as as you get older and the years tick by you realise it is no age. Society can’t make up its mind. On one hand we are classified as old around early to mid sixties however they want us to work longer. Yet someone dying at that age is not seen as old. I am a good few years off that age group thanks, in case you were wondering.

People say age is just a number and I guess that is true. Also I suppose your health has bearing on how you feel too. Wouldn’t it be nice if people could actually look past that number and value you as the person and knowledge you have gained over the years. I will admit I find myself telling my husband about things that have happened and go to say the person was old, but now I have to consider they may not be that many years older than me and I don’t want that label.

So tonight walking home a group of young teens in the other side of the road and one yells out ‘alright Nan?!’ That stung more than the other comment. I mean I am a step Nan to three and an Aunt and Great Aunt to quite a few but what gives them the right. I wasn’t even wearing my Granny trousers. I gave them my well practised ‘not impressed’ glare to which one sheepishly said sorry.

So this tired looking woman has booked a few days off and we are heading to the coast. Old biddy town obviously. No making use of OAP rates: I don’t qualify. Will we behave inappropriately? Possibly. Will there be childish giggling and sniggering? For sure. I may take some change from the pot and hit the arcade. Ice cream and donuts? Not telling! There will be drinking! Hopefully I won’t make the news…. but I make no promises. E x