Several months later

It's almost 5 months since the 3rd and final surgery on my mouth, so how are things now?

I have been left with 2 skin flaps that look like polyps between my cheek and gums as a result of 2 failed buccal flap repairs. 

They are often sore as there is now very little space there due to my cheek having been pulled inwards for the repairs.

My speech has been affected due to my cheek having been pulled inwards. It is more difficult to pronounce things/ form some sounds. I now sound like I have a speech impediment, particularly when I am tired.

The skin that has grown to replace that which was taken from the entire right hand side of the roof of my mouth feels strange... numb but painful in turn, and very dry, which also affects my speech and means my tongue gets stuck there.

I still can't lift the right side of my face to smile properly.

My mouth is lopsided and my lips are very noticeably uneven... much bigger on the right hand side than the left. I am considering seeing an aesthetician to have a small amount of lip filler to rectify things (I have done my research; she is local and award winning).

My upper lip on the right hand side looks permanently bruised. I can't apply lipstick to cover this as it draws even more attention to my lopsided, uneven mouth.

I still have altered sensation under my eye and across my cheekbone ( numbness and intermittent nerve pain).

The right hand side of my nose is painful to the touch, particularly the lower half. The pain seems to be connected to the altered sensation in my cheek. It is eyewatering to cleanse my face and wipe my nose.

The CFS has been so much worse due to having 3 general anaesthetics in 6 weeks. I'm now able to do far less than I was, both mentally and physically, without being badly affected.

It's preferable to having a face full of infection that I could smell and taste, that was so painful I couldn't think straight, but not the outcome I expected.

In other news, the organisation of my daughter's testing has been an absolute farce, but she has her heart scan this week. 

My heart condition has reared its head due to the stress of that, and some other life 'stuff', just to add to the CFS.

Onwards, because what else can we do?

Downhill

 

We had a lovely day at Erddig on Monday. It's a beautiful property with an interesting history, and lots of ' below stairs' rooms to look at aswell as those 'upstairs'. Not many photos taken as I was so busy looking at things and listening to the room guides. The place is crammed with original objects and furniture as the family were hoarders.

The weather was glorious, and the scones were fresh and still slightly warm.

We got back to the news that our GP had sent my younger daughter to A and E for an ecg and a raft of blood tests. She's to have 24 hour ecg monitoring and a heart scan, and has been instructed to rest.

We have a family history of heart problems. 

She's 31.

Spoons...

The CFS has knocked me off my feet yet again this week. 

I spent almost all day on Monday sleeping, then slept all night. I felt drugged, and unable to pull myself out of it. Just awful. I felt a little better on Tuesday but it happened again on Wednesday. I perked up enough to go to Penrhyn Castle on Thursday, and then suffered again yesterday.

Built on the backs of slaves on Jamaican sugar plantations, and maintained on the backs of Welsh quarry workers. I've always struggled with the history when visiting these properties.

Views across to Llandudno

I'm always more interested in the craftsmanship than I am in the families who lived in these places. 

Lunch with a view from the picnic tables

It will be 11 years next month since it all started with the CFS. I was 50 at the time, having been diagnosed with a heart condition at 43 that meant I couldn't teach, despite being in the final year of my teaching degree and having been earmarked for a job by the head at my final placement school. My high blood pressure was diagnosed at the age of 39.

The operations of this year have made things worse, and more frequent, and I am having to be more careful with my spoons than ever. 

The upside is that I rarely try to push through, and definitely not to keep anyone else happy or do things for them to my detriment. 

I'm at my limit of what I'm able to do for my mother... currently it's all admin/ bill paying/ meter reading, prescription ordering and collecting, all medical appointments ( booking, rearranging, driving to, accompanying during, advocating for during, explaining outcomes... my phone number is the one on her records so everything comes to me), all shopping, all ordering of anything online, posting anything necessary, taking stuff to charity shops, some DIY ( vinyl wrapping worktops was the most recent), and phoning every other day as she has nobody else to talk to, having alienated everyone.

I can't do anything more than that. If she ever needs a gardener, cleaner or personal care she's going to have to pay for professional services.

My health is more important than what she wants. She's adamant she won't have anyone in the house to help/ won't go into a home, sonething she stated in no uncertain terms to the GP when I took her recently. I'm adamant I can't do any more.

I don't have the spoons and can't/ won't ever forget her cruelty over the years.

Two finishes

I've finished two baby blankets recently. As the large one has pink in it, and our niece is expecting a baby boy, I'll donate that one to the neo natal charity at the maternity hospital.

I've just cast on one for our niece that I'm going to use beige, cream and sage green for, the majority of which was originally bought by my late mother in law.

I bought a pack of 5 babygros yesterday in colours that will match the palette I'm knitting in. I'll add those to the gift.

A bit less blah

Snapped on the day we looked round in June 2024. It still looked the same last week, except for a few things on the shelves.

 

A bit of a change. It's so much brighter and far less blah.

£3 St Kentigern charity shop Denbigh

£1.50 NCAR charity shop Denbigh

50p St Kentigern charity shop Denbigh

The en suite has come together very quickly. We found an end of batch roll of wallpaper in B &Q, reduced from £22 to £15. I've discovered that wallpaper in there is expensive and the quality doesn't match the price!  I usually buy online, finding paper I like and shopping round for the best price. With paste already mixed from doing the bathroom, and us having to go home soon (3 appointments this week) we needed to find some paper quickly.

The other bits have been charity shopped, or existing stuff used. 

I just painted the top of the tulip thing and now it holds loo rolls.

 The frame was covered in poorly applied treacly varnish which I sanded off then paint was applied. I put a greetings card in the frame.

 The patterned, small, 2 drawer unit was painted in the same dark green paint left over from painting the bathroom in Lancashire.

I moved the yellow pot from a bedroom and popped a spider plant in it. I got the original spider plant from a colleague when I worked at the ante natal clinic. She'd grown them on from plantlets off her large plant and potted one up for each of us. I left there in 1995, and I think this is a 3rd generation from the plant I received.

The square picture is an original painting bought for 50p in St Anne's years ago.

The next time I'm in Denbigh I'll pick up some frosting spray and try to disguise the edges of the mirror, and I need to bring some filler from home for the holes in the 'wood' surround.

I added green stick on tiles (£3.99 Home Bargains) behind the sink.

Total cost £23.99...

I haven't included the cost of things I've owned for years and just moved from other rooms

In other news, I discovered a leak under the sink on Saturday afternoon. Thank goodness it happened while we were here. It turned out that one of the copper pipes that went up into the tap had sheared through completely inside the tap! 

We had to buy a new tap as it was impossible to remove the broken part from inside it, and J fitted it. 

So much for our planned quiet afternoon! 

Life has been lifing

Life has continued in its usual way... good in Wales, busy and often fraught in Lancashire. There is so much I could write about that!

We took our grandchild to the caravan with us for a few days which was wonderful. The weather was lovely so we spent 3 afternoons on the almost deserted beach.

We had a blissful 3 days with them, then they came back to Wales with their mummy and daddy a week later for the bank holiday weekend.

They've now started school. They're exhausted but happy; being happy is the important thing.

My elder daughter's artwork appeared at one of the shows at the Edinburgh Festival. It has also appeared on television in the past, and I think pieces are still being used in that TV programme which is currently airing a new series. We've always been in awe of her artistic talents... they were evident from a very young age.

My younger daughter has not been made redundant, nor did she have to apply for her own job. We are very relieved for her.

I've now completed 2 blankets and a cardigan for our niece's baby. She has her 20 week scan soon and I think she and her husband are going to find out whether it's a boy or girl so I'll be able to decide better about colours and styles.

I found a replacement breadmaker in a charity shop, reduced from £10 to £5. It replaces one bought at the carboot for £2 over 11 years ago, which replaced the one I bought with staff discount the day I left my job in 2000. I've only used the dough programme on the new one so far as I prefer to handshape my loaves and bake them in the oven if I have time. Both loaves and rolls have been successful.

Yesterday, J hung wallpaper that was left over from the bathroom in Lancashire in the caravan bathroom. We swapped the toilet seat a few weeks ago after finallyfinding a green one. I bought the original 1910 watercolour with £10 petrol money I was given by someone a couple of months ago.  The plantstand was a bargain buy from TK Maxx years ago and had been relegated to the garage when the family moved in with us. It's marble topped so was dangerous for an 18 month old. The metalwork was gold so I used silver Rub'n'Buff on it. The room now feels much less blah than it did. Next to tackle is the ensuite. That room really is blah and I still haven't managed to make it less so. I'm waiting for inspiration to strike.

I bought 2 more original paintings for £5 each. I can't find anything about the artist for the top one, but the one in the blue frame is by Michael Hipkins and is worth £200+. Neither has been hung yet.

The CFS is currently giving me a kicking so there's nothing new there. It's probably a response to recently being in Lancashire for a week, so even if I perk up I'll doubtless be back to square one later this month. 

It's almost 11 years since the CFS began, and it still  has the capacity to astound me with its awfulness. Nothing can be done though, so we just carry on as best we can... it affects J's life too and even though I shouldn't, I do carry guilt for that.

I can't deny it's bloody hard sometimes...

Grass growing, paint drying

 

I'm sure you're sick of reading about me doing things for my mother.

 Yesterday's appointment almost finished me off. 

It was so bad that I went to bed at 4.30pm and stayed there.

 Have you ever sat in your car and screamed?

 I have. 

More than once.

My life is currently being here in Lancashire doing things for others for a week, followed by time at the caravan to recover physically and mentally.

It doesn't make for an interesting blog; so I'm going to disappear for a bit.

I'll be back if something of interest happens. Who knows how long it will take? 

Maybe never!

Take care all

Xx

One down

The first of this week's appointments was short, but mum also wanted shopping despite spending over £200 at Asda last week. Over an hour of shopping in Sainsbury's and another £150+ spent, ' Just in case you go away for a long time again'... the longest that I've been away is just over 2 weeks.

I have no idea why one almost 88 year old woman needs so much grocery shopping!

The vinyl wrap for her worktops arrived while I was away. I took it round and she approved it, so I did one side of the kitchen this afternoon. 

This week has/will run as:

Monday: appointment for mum, then shopping at Sainsbury's with her, shopping at Lidl with J in the afternoon 

Tuesday: town with J, called into garage to make appointment, I went to mum's to vinyl wrap part of her worktops.  Discussed POA for health and welfare with her. Found previously used solicitor's details ( she's moved practice), arranged to email her on mum's behalf. I know it can be done online yourself but as mum has alienated everyone she doesn't have anyone to use as witnesses, so a solicitor it is. J went to the allotment.

Wednesday: appointment with mum, and she told me this afternoon that she needs more shopping as she forgot some things yesterday!

Thursday: car to the garage for 2 new tyres, finish vinyl wrapping mum's worktops ( the side with the sink so it won't be quick or easy)

Friday: appointment with mum in the morning. Nothing planned for the afternoon, though I'll need to pack.

Our little one was fast asleep in bed when we arrived home on Sunday, so their face lit up when I went to greet them at their bedroom door yesterday morning. They jumped into my arms, squeezed me tight, put their head on my shoulder and whispered, 'Grandma'. 

I never had any yearnings for grandchildren, and always told my sister in law, who has 5,  that if they came along I would love them, but if we never had any, then I'd be OK because I'd never know what I was missing.

It was true, but our little one is my pride and joy, and has enhanced my life so very much. I am blessed to have them in my life, to have seen them enter the world, to have looked after them, and to have shared my home with them for the last 2.5 years.

It wouldn't be for everyone, but it has worked for us.

They're the best part about being back in Lancashire.

Well, I sea

A quick detour to St Dyfnog's Well yesterday after brunch in Denbigh and a browse in the antique shop

My usual Saturday morning beach walk today

Home tomorrow via Greater Manchester for a visit with family.

Three appointments with my mother next week... she's already complaining about it.

Can't wait for a big cuddle with our little one. Just a few short weeks until they start school!

Breathing

Watching... The Light in the Hall ( a rewatch) and The Light in the Hall: Still Waters. Finished both now so we need to find something else.

Cooking.... on Saturday afternoon I made a chickpea curry in the slo cooker , roasted carrots, peppers and all of the home grown shallots, and baked some fruit scones

Eating... at least 2 recognisable meals each day. The roasted veg has featured a lot. We had the curry on Sunday ( always better the day after I make it), again yesterday, and I've frozen the rest. We had an ice cream from the van on the prom yesterday afternoon. It was the first this year and I dont think I'll bother again. I chose the smallest available but it was far too much for me... I got sick of eating it.

Sleeping... not very well at night, so I'm exhausted by the afternoon. I had a short nap during the F1 on Sunday and fell asleep late yesterday afternoon too as I was so tired I couldn't keep my eyes open. When I'm tired I have to close one eye or I can't focus my vision; everything is blurred. Therein lies disaster as I always fall asleep!

Recording... all my meals on My Fitness Pal

Knitting... another blanket for our niece's baby as I finished the first one just after we arrived.

Walking... a walk on Saturday, and one yesterday afternoon along the prom and into town to get a few bits from Tesco. I'll probably get the walking pad out this afternoon.

Fasting... I recently started fasting again having not done it properly for months due to having the 3 surgeries. I've built back up to 18 hours so far and feel better for it as it curtails the bingeing that is all too easy for me to slip into. 18 hours is easy for me as I do 6pm to 12 noon.

Trying... not to fall into 'competitive dieting' mode with myself as that's a dangerous path.

Winning... that battle so far. Slow and steady and I've given myself until Christmas to be where I want to be, which is a sensible place not a super skinny one.

And breathe

Really windy at the beach yesterday. I don't know how the runners managed Parkrun along the prom

We were in Lancashire last week...

Monday...  looked after  little one with J for 3 hours, then took mum to the opticians, then took her shopping ( she spent £200+ so there was a lot and it took ages), took her home and had a coffee with her, paid her tv licence online, went home and looked after the little one with J for another 3.5 hours

Tuesday... went into town with J and little one, went to the bank and Boots, took little one for breakfast, went to the market,  went home, looked after them for another 5 hours

Wednesday... looked after little one with J for 9 hours, went to the allotment for 2 hours in the evening. I strimmed all grass, weeded, pulled all onions and some rhubarb,  J dug up potatoes and weeded

Thursday... looked after little one for an hour until J got up, went into town on my own to return a dress, went to Primark, J looked after little one, I swapped dress for t-shirts and trousers, went to M and S for strawberries and tomatoes ( used a voucher so just 30p to pay) drove to Argos in Sainsbury's to collect my new phone charger, went home, collected the little one, took them to visit my mum. Ordered her prescription. J moved her small fridge out to the garage, I cleaned the top of the fridge freezer, J moved microwave up there. I measured her worktops, showed her vinyl wrap choices and ordered what she wanted. Went home, looked after the little one for another 3 hours, packed, filled the car with petrol, travelled to Wales, dropped the bags, went shopping, put the shopping away, and unpacked.

And breathe for a few days. 

I'm physically and mentally exhausted. I feel absolutely drained and struggled to lift my arms to get my washing in and fold it before we left on Thursday. That's when I know it's bad. Despite that, I'm only managing to sleep for a couple of hours at a time with wakeful periods in-between.

We have to return to Lancashire on Friday for the retirement party, and stay to take my mum to 3 medical appointments the following week, so I'll doubtless be exhausted again afterwards, but for now I will rest.

Back

Lunch on Thursday... Granny Smith apple,  tangerine, strawberries, red grapes

Cloudy but warm on Saturday morning 

A rogue sunflower in the garden

We're back 'home' this week to look after the little one as their childminder is on 2 weeks' annual leave. Mummy is off next week.

J will be in charge tomorrow as I'm taking my mum to Specsavers for an eye test, then shopping.

In the first week of August she has her 12 weekly injection into her eye for macular degeneration, and a couple of days later a hospital appointment at neuro-opthalmology regarding her ocular myasthenia gravis.

We also have a retirement party at the end of this month which I'd prefer not to attend as a lot of J's former colleagues will be there and I hate how I look more than ever at the moment. I feel like an embarrassment. 

Inbetween all that we should get back to the caravan. The last 2 weeks have been lovely and it has felt much more like being at home than being on holiday, which is what I was hoping for. We've done very little, spending the majority of the time pottering about, and relaxing in the garden, not feeling the need to be out and about.

Our little one announced when we got home this evening that, ' I'm dark, daddy is dark and so is papa ( J)! The little one is mixed race, daddy is of African descent, and papa is just very tanned! Apparently ' mummy is light and so is grandma.'  I love their innocence and wish it could always be this way, but am acutely aware that at some point they will directly encounter those for whom their dark skin is a problem.

Only minor problems with my mum while we were away, though her being uncontactable for 18 hours was a bit of a pain. My daughter had to take an extended lunch break and get a taxi to my mum's house to check on her. She was perfectly well and had just forgotten to charge her phone for the second time in a week ( we'd had to drive round there exactly 7 days earlier for the same reasons). She'd thought about doing it then become engrossed in the tennis! She now has a sign up to remind her , a suggestion of mine put to her by my daughter, and that she actually agreed with.

When I rang her on Thursday evening she announced she was going to go to the local supermarket on Friday morning. She hasn't left the house unaccompanied for at least 18 months. She has a visual impairment.  She lives on a busy road that she would need to cross. The last time I took her to the supermarket we had to leave quickly as she felt disorientated.

I couldn't be bothered to argue with her. I just told her I thought it was a bad idea, but I couldn't stop her as she's an adult and I was in Wales. In her words, ' I'm going to have to do it, aren't I? '

Obviously, as I'd had the temerity to go away for 2 weeks for the first time since 2005. 

I resisted the urge to binge then, but have succumbed since.

She rang on Friday morning to say she wasn't going shopping and realised that she wasn't capable. My daughter did her shopping for her on Saturday morning, as had been arranged the previous week.

Tomorrow she wants to do a huge stock up shop. Wish me luck!