journeyofacoupleofsteps

[journeyofacoupleofsteps]

I have made the decision to postpone my appointment and ask for it to be rescheduled because right now, I've got a lot to process from the sudden death of my husband

And I know that I'm not in the right head space.

I'm sure that the department will understand but most importantly I hope that my hubby will forgive me and he shouldn't feel any guilt for leaving so suddenly and abruptly like that.

He is with his mum, dad and sister now

Will update you all when a next date is set

[journeyofacoupleofsteps]

Received the appointment to discuss the procedure of this upcoming surgery

And it's on our wedding anniversary

Hubby asked if thats a good or bad thing

Honestly?

I don't really know

I've been tired out and grouchy all day, from yesterday's activities. Mostly hubby stuff

Pay off a bill, drop in a prescription, get a blood test for liver function etc. We dropped into an antique shop then had dinner. Once that was done, head back home.

That's a lot of walking around, as well as push a not so lightweight hubby around in his wheelchair

It's certainly taken a lot out of me but I still keep going. I don't have time or the luxury of relaxing, because we also have a VERY demanding dog

And that's it

[journeyofacoupleofsteps]

Whilst I've got a few quiet minutes before the tornado that is hubby, decides to grace us with his presence, I thought I'd sit and write out my list of questions to ask the neurosurgeon during the phone chat.

I would REALLY like to not inform a certain family member, as I do not trust her at all and she WILL try to interfere. But this will leave hubby totally isolated.

Yes, he can move around a little bit, but it would be nice for him to go out for a couple of hours - weather permitting.

So .. I'm torn now

[journeyofacoupleofsteps]

So ... I've received a letter through the post.

A phone chat appointment to discuss the next steps forward.

Which will be the surgery.

I have no thoughts - yet - give it time.

But one thing I really need to do is to rewrite my list of questions. Even if some are really dumb

And get prepared for my hospital stay

Hopefully it will be the maximum of 3 days

[journeyofacoupleofsteps]

It's been a week since my MRI scan. I'm just waiting for the results, maybe a chat about the next steps going forward. And then a date for the surgery.

I misplaced my list of questions so I'll have to write them again.

Physio have given hubby a rollator and a rolling trolley so that he can move things around without worrying that he will drop them - plates and cups of tea - and falling over, as well as pop to the shop for anything we might need.

The place is getting cluttered with medical equipment. Some can be returned but he is hanging onto it - just in case

I've got an account with Tesco and Iceland for food shopping, so he doesn't have to travel far. And if we don't feel like cooking, JustEat is our usual go to

Speech is starting to be affected, as I tried talking to hubby the other day and mumbled something or other. Bless him, he was patient to wait for me to repeat myself

Movement - as far as I'm aware - isn't being affected

Yet

[journeyofacoupleofsteps]

Mri scan appointment has come through. I've added it to my phone planner.

It is in September

After that?

I have absolutely no idea how fast or slow it'll be for the surgery. We will have to wait and see

Am I nervous?

About the scan?

Nah

Surgery afterwards? A little but it is what it is. It needs doing and I have to have faith in the surgical team for this very delicate procedure

[journeyofacoupleofsteps]

Under the cut - sensitive subject

I hate the waiting around and wish that the hospital would hurry up and book my MRI scan soon. I can't sit around under a dark cloud like this.

And why the hurry?

My seizures are coming back, despite taking my meds as instructed. So I assume that the squatter has increased in size ... or has started pushing against some vital parts of my brain.

It is now starting to affect my daily life,and robbing me of my independence somewhat. I'm constantly tired out and sleeping a lot more. Any effort to do stuff around the house is hampered by fatigue, and concentration totally kaput.

I hate this.

[journeyofacoupleofsteps]

I haven't logged for a while. A lot of things happened all at once last year and it looks as if it's starting all over again.

But the most important thing is ...

I'm waiting for my next and hopefully last MRI scan before making the decision to go for surgery.

And why is that?

Because I am noticing a LOT of things happening with my brain.

My speech is being affected, last incident was when I tried to make an appointment to get my hair done. Thank goodness Suzanne knew who I was and what I needed doing, from the garbled mess that came out of my mouth.

This is not the first time I've had issues, even hubby has noticed and asked me if i was okay. It's been going on for a while and definitely can't be ignored.

I was told that if I left it any longer, the squatter is currently creeping towards the areas that control speech and movement.

I haven't noticed any issues with movement, maybe one of my feet tends to slide a little when walking. But that's because the pavement is very uneven in places.

I'll have to write down my questions in preparation, as well as set up a playlist.

At least hubby can get himself in and out of the house now, so he can fend for himself.

I really REALLY don't want Bossy sister in law poking her nose in, but whilst I'm in hospital, there's nothing stopping her from dropping in and trying to take over.

My plan ... should I lose my speech ... is to get some flash cards. Especially insulting ones so that I can make my opinions known.

But it shouldn't get to that part

I hope

[journeyofacoupleofsteps]

Update on my personal health

Apparently I had an appointment today but I never received the letter *rolls eyes stupid royal mail changing their delivery rosters and reducing the hours. Knew this would happen*

Anyways. I got to chat with my consultant and he said that my squatter hasn't moved much over the last 3 years. Not that this means I can get away with no surgery.

That's still on the cards, but at least I don't have that dark shadow hanging over me now.

I've got another mri scan in 6 months and see what happens after that.

At least I've got a stay of execution

For now

[journeyofacoupleofsteps]

Damn

Had another episode tonight. Just got out of the bath, walked into the bedroom and couldn't speak.

Expecting the worst, I put my glasses in a safe place and sat on the bed, taking deep breaths to try and get a grip, and not panic.

If I went into a full seizure, then I'd be safe and not hurt myself

Got my scan tomorrow, so I'll see just how active this squatter has become and if it has grown any.

Or if it is pushing against some key areas ... like speech.

I had a blip today in Costa coffee. Said the wrong thing and was corrected. I thanked the person for that and not in a snarky way

[journeyofacoupleofsteps]

Haven't written in here for a while. So here goes.

Was told that knitting, I was using my brain.

Yeah, okay. I AM, but it is very intermittent and I always make mistakes. The same applies with my duolingo the maximum time spent is less than 5 minutes and more often than not, I use up all my lives so I have to wait and fall back down the leader board.

Same also applies with reading. I have one book that I only manage one page - if that - and that was two weeks ago. I used to go through books in mere weeks. But lately, I need to be in the mood. And the ones I've read recently, I haven't enjoyed.

Even those ones I've had to a while and tried to reread, it just doesn't feel the same.

Writing. Another pastime I used to love. Recently, it's been a struggle just coming up with one sentence, let alone a 100 word drabble.

I've given up on driving, since stuff slips out of my head in nanoseconds and that will cause accidents.

Same with playing my keyboard. Can't play a simple tune, and I'd been playing for years.

Using my brain.

Yeah, okay. If that's what people want to believe, that's up to them. I know what it is like to live with this 'new normal'. I'm not comfortable about it, but that's life for you

[journeyofacoupleofsteps]

I knew something was amiss with the old noggin. When I was experiencing petit mals all of a sudden. Feeling spaced out briefly at random moments. Especially when I was calm and not stressed out.

And now I can smell strong urine everywhere. I might have a UTI that needs sorting out. But its always when the bed needs changing.

Once a week.

I am so glad I didn't return to driving again. But seriously miffed that my back decides to play up ... just when I was planning to do more walking.

[journeyofacoupleofsteps]

Got my MRI scan next week. It should be okay but having changed my meds to a higher dosage, that was some cause for concern.

Be a wee bit ironic if I tested positive that day.

[journeyofacoupleofsteps]

Struggling with my diabetes atm. Doesn't help when the weather is muggy and uncomfortable either.

Plus ... family dramas are never ending. So my head is battered there.

I am realising that some foods spike blood sugar levels ... even when I think they're okay.

For example: sugar free pink lemonade. I thought it was safe. But it isn't. I usually take a drink to bed with me for when I wake up thirsty. Its normally a can of diet coke or sugar free squash. But I took pink lemonade with me.

Since that's the only thing I was drinking thru the night - just little bits not half a litre or whatever - checked my blood sugars as per usual and they'd spiked somewhat.

Not a great deal but higher than my normal readings of between 5 and 6.

I hadn't eaten anything out of the ordinary, nor did I have a midnight fridge raid - as there's nothing there anyhow - so I knew it was that fizzy drink.

So, it's a case of trial and error.

I've also noticed that my tastebuds have changed - not covid related, trust me there tested negative continuously - but some foods that I used to love, I'm not really enjoying any more

[journeyofacoupleofsteps]

Its been a while since I wrote something. And maybe that's a good thing? I dunno. At least nothing terrible has to be logged in.

I have ... however ... made a startling discovery.

I read about the 'benefits' of taking apple cider vinegar, and noted comments in the Facebook group I joined.

Some, obviously said it was a whole waste of money. Others sang their praises.

I ... sat on the fence about it, but decided to try some out .. you know .. for experimental purposes.

If it worked, fine, if not, I won't try it again.

Anyways, I put the equivalent of a couple of tablespoons into my juice drink container mixed with dilute orange juice because it would have tasted ... EWWW otherwise

For a good couple of months, I drank it daily but didn't actually notice any benefits. So the last little bit, I used to unsuccessfully unclog the toilet.

But then ... I noticed that my blood sugars started rising dramatically! Up until then, they'd been at a stable normal/low level.

So yeah, it WAS working but I never took that much notice.

Now the weather is improving, it is now time to start walking more. And once the indoor swimming pools/leisure centres reopen... you can guarantee that I'll be there once a week, maybe push for twice

[journeyofacoupleofsteps]

Today ... I managed to ...

Sort out a months worth of clean socks and underwear and put them away - there's a bag full of odd socks but they will find their partners ... eventually

Sorted out dirty laundry into dark and lights in preparation for washing

Put a lampshade up in the front room

Organised paper and cardboard ready for recycling tomorrow

Vacuumed the front room and hall floors (got messy within an hour thanks to the dog eating his biscuits almost immediately)

Doesn't sound like much, but that's what I managed today. A lot more than I used to be able to do. And that's without any help from hubby. OR the useless advice from the neurology team about 'pacing myself'

That ... is almost impossible, because as soon as I tidy or do something, a human and canine hurricane blasts through the house and un does everything. And more often makes things worse.

So ... if anyone (once the restrictions are lifted and covid has been eradicated completely) complains about the messy house ... the finger points firmly towards the true culprits.

That totals 5 spoons of energy today, before I had to go rest. Even after a good sleep, I barely have 2 spoons left to cook dinner, or make a cuppa .. or even wash up

But ... because I only work 2 days, surely I am able to blast through the house, pick up after a lazy adult/teenager consistently.

It

Doesn't

Work

Like

That

Aw boo hoo I hear some folks cry, stop wanting attention etc. If I don't write down my whinges and personal concerns, then I WILL forget. And I need all this information aa proof that I am NOT faking things.

[journeyofacoupleofsteps]

Really disappointed with the health service in general.

Took a 6 month wait and increasingly random but ftequent bouts of petit mal seizures, to convince the neurologist that the meds weren't working properly. My body has probably grown immune to the dosage after almost 5 years of taking them.

I assumed that once he contacted my GP, that they would change and issue the new meds. But nope. I had to wait another couple of weeks, nearly running out of my current meds and expecting the new ones to arrive fairly soon.

I ended up chasing them up with the dispenser, only to be told that my list of meds weren't updated and to contact my GP surgery.

The letter HAD been sent out and was still sitting there awaiting a response.

I understand that due to covid putting everything back, there would be a backlog. But surely all that was needed, was just a small edit of my meds. Say a 5 minute task?

Yet they're so eager to shove other meds into me immediately.

I've seen the side effects of statins and I do NOT intend to live like that. Joints and muscles in constant pain. I would rather overhaul my whole lifestyle and eat healthier as well as build up exercise and prolong my life that way.

I don't have a sweet tooth as such. At least not for sweets. But if they are in the house ... I WILL eat them. Ice cream seems to be my weakness.

Oh and before I forget, during that almost 7 month wait, I'm forgetting things a lot more. My speech is slightly slurred and odd words just spill out of my mouth.

But ... I still have to wait even longer for an MRI scan. It's been over a year now, since the last one, almost 2 years.