Monthly Archives: May 2016

Sweet potato wedges

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Saturday 21st to Sunday 22nd May

A trip to Banbury to get a bit of shopping, but we had to be back for a certain time today.

5.30pm was kick-off time for the 2016 FA Cup Final (the world’s oldest football cup competition) at Wembley Stadium. Crystal Palace were playing Gary’s favourite team Manchester United, so of course it was a very important match. It was a good game to watch in the end, going in to extra time. I was half hoping that it would go to penalties as that is, I think, a very exciting (but painful in some ways) thing to watch. It didn’t need to get that far though. Man Utd won in the end 2-1 πŸ†

Time for tea! Dee-lish πŸ˜‹

I got back home on Sunday morning to find this!

Lovely trip hazard isn’t it? One of the fences in the garden had become very wobbly, looking like every time we had high winds it was going to come crashing down. So my landlord had been round to re-cement the fence post and this was apparently holding it in place until it set!

It was a reasonably nice Sunday afternoon weather wise! Gary came down and cut the grass again. It is growing like a mad thing now he has put that grass seed down. Typical isn’t it, the garden is starting to look much more reasonable now and we have to move out! That’s just the way my luck seems to go 😏

Then Julie and Hannah came round to visit 😱 What had I done to deserve this!!! So we all sat out in the garden and had a cup of tea, and I had a piece of the lovely ‘reduced’ carrot cake that they had bought for me from our local supermarket (it is known that I will only treat myself to a bit of cake if it has a reduced sticker on it πŸ˜‚). Robyn joined us too, entertaining us with her funny topics of conversation! A nice afternoon.

I found this, which is for my daughters …

They have been through a lot, in many different ways. And they NEVER FAIL to get up πŸ‘©β€β€οΈβ€πŸ‘©

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Achy and wobbly

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Wednesday 18th to Friday 20th May

I didn’t feel too great when I first woke up this morning. I was still extremely tired, my head was aching, my tummy was aching, my body ached all over really! Stress or a little bug I’ve picked up from somewhere?

Then I received some terrible news. My friend Sue had very sadly died earlier this morning. Of course I was extremely upset – and I was meant to be at work in half an hour. So I rang my manager and explained what had happened and said I would be into work a few minutes late so I had a bit of extra time to pull myself together ☹️

I worked until 3.00pm today then I walked home, got straight in my car and drove to the doctors’ surgery for my appointment with the nurse to have my stitches out. Everything was fine. I just have to keep it covered and dry again for another 48 hours. Then hopefully that will be that all over and done with. Just to wait for the results now.

While I was waiting for the nurse I thought I would take a photo of my fingers to show you!

Because I suffer with Raynauds that’s why. This is as a result of my original autoimmune condition of Primary Biliary Cholangitis. I have suffered with this condition for years but when I was very ill and was taking many many different tablets every day, it seemed to go away. Now nearly all of my medications have stopped, it has come back! I always think that maybe it was the steroids that I took that kept it at bay for a while? 

Now, after my fingers have turned white and they finally decide that they are going to come back to life, I can actually see the blood slowly moving back into my veins, turning from white back into my normal skin colour 😏 It’s quite freaky!

Thursday morning and I was still feeling achy and wobbly, the same as yesterday. Thank goodness it wasn’t a work day so I was just at home doing various bits and pieces. 

I met Robyn in Caffe Nero later. She was on her lunch break and I was just giving myself a break from the house and jobs! Then while I was just sat in there minding my own business I got a phone call from a journalist who was interested in my story, hopefully for inclusion in a woman’s magazine and newspaper. We arranged that she would call me back tomorrow when I had finished work so that we could have a chat and she could then write her version of my story for me to have a look at.

I just went for my much needed walk in the evening.

Friday = work! I had a long phone call with my journalist friend in the afternoon and then I started to prepare our evening meal and did some other jobs in the kitchen. While I was doing this Leah had got back from work and was sat on her bed doing some of her course work. She is training to become a ‘qualified’ dental nurse (as she is already working as one!!!) I had the radio blaring as I normally listen to the Top 40 on Radio 1 on a Friday πŸ€—   so Leah shut her bedroom door as she couldn’t concentrate on what she was doing, funny! It just took me back to the ‘good old days’ with all the dreaded school and college homework 😏 A real blast from the past!

Lots to read

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Monday 16th to Tuesday 17th May

When I woke up this morning the dressing had come off from where my mole had been and the Steri-Strip had now gone too! It all seemed to look okay so I decided just to leave it this time. The remaining stitches are due to come out on Wednesday anyway. Here’s a bit of a close up shot for you!

I have been thinking for a while about doing a car boot sale as I have lots of things I could do with trying to get rid of. This is not exactly one of my favourite things to be doing but as we are going to be moving again, I need to make a start on trying to clear a few things out of the way :/ So I had decided that this morning would be a good time to start to put some things to one side ready. I do normally like to keep hold of things but I think this time I was quite successful with my sorting! 

In the afternoon I walked along to the town to meet my friend Jackie β˜•οΈ

Robyn told me and Leah she was going to cook for us again tonight. 😳 what this time?!!! A very nice tasting chicken curry – well done Robyn πŸ˜ƒ

I came across How much the world has changed when I was having a look around on the Internet. Isn’t it amazing just how much some of these cities have grown over the years? Wouldn’t it be fascinating to be able to look into the future to see how they are going to be? Are buildings just going to keep on getting higher?!!!

I found another couple of articles on this same website justsomething that I found interesting to look at, like how different breakfast looks like from around the world – really? people eat some of those things for breakfast?? and the photos of the amazing cakes that Olga the Russian confectioner makes. But there are so many other things featured for you to have a look at when you have half an hour to spare!

Tuesday was a work day and then I had a doctors appointment at 5.30. Apparently it is a possibility that I might have fibroids now, as I have been suffering with a lot of heavy bleeding. Never ending for me isn’t it :/ Here’s some information about Fibroids if you would like to have a read. So I am now waiting for an appointment to come through to have a scan. I will keep you posted!
Here is an amazing story for you – Head transplant. I guess people thought it was strange back when the first human internal organs were transplanted …

Two sunny walks

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Saturday 14th to Sunday 15th May

A relaxed morning spent catching up with some emails and a few other jobs that needed doing on my iPad. 

Then a walk around the town to get some fresh air as it was a lovely day! It’s good to have a look about and see what’s going on in your own hometown …

When we got back Gary decided he fancied a drive out so we set off not really having a clue where we were going :/ A mystery tour 😱

Then back to Julie’s for a visit and a cuppa. Jack was doing something to the brakes on Hannah’s car so we were all stood about outside watching and chatting. Apart from Robyn, who I was a little worried about – she was missing! :/ She would have finished work by now and she still wasn’t answering my messages, which was unusual. I was about to send out a search party when she finally contacted me. She had gone out for a drink straight from work with some of the other girls 😏 Naughty!!!

Sunday, another sunny day and another walkabout.

In the afternoon I sat enjoying the sun in Gary’s garden. He decided to give the barbecue a bit of a clean and look what he found lurking behind it.

It’s giving me the shivers again looking at this photo right now 😳 I think it’s the way it was looking right at me :/

Japan, a country which does seem to have a low rate of people that actually get the transplants that they need. So someone has come up with this idea Second Life Toys, which is trying to raise awareness of a shortage of child organ donors. I hope this is successful. Maybe it will eventually catch on in other countries too.

No breakfast

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Thursday 12th to Friday 13th May

I think my body had recovered a tiny bit this morning although I was still tired and now a bit frustrated too as I had some catching up to do to get some of my outstanding jobs done. So I was out in the garden hanging Robyn’s duvet cover on the washing line to dry, stretching up when OUCH 😫 I quickly went inside and looked in the mirror and yes, I had pulled one of my stitches out :/

It was very sore. I thought I had better get it checked out and as I had an appointment in the local hospital today anyway, which is almost next door to the doctors surgery, I rang and they said it would be best to get it looked at, so I  got an appointment with the nurse.

So now all my plans had to change :/ I had been planning to drive up to the hospital as I had an appointment to see my original consultant, but I thought maybe I shouldn’t in case some more of my stitches came loose! So I then had to rush about to get ready (no time for breakfast) so I could catch the bus in time πŸƒ

While I was in the hospital waiting room I saw that some of our leaflets were still on display encouraging people to sign up to become an organ donor from when Robyn was doing her challenge πŸ™‚

I had a chat with my consultant Dr Ellis. He doesn’t really need to do a lot as I am still under the doctors in the QE Birmingham, he just likes to keep a check on me really! He said to me ‘you are a different person to what you were’.

And I am. It’s so easy to forget just how ill I was before my transplants when your so busy getting on with what life throws at you now, so I think it’s quite good for me when people say these things, just every now and then, so I can stop and think back and realise just how lucky I really am. I certainly don’t want to take it all for granted, so if I can help just a few people with my blog and by my visits to the liver ward at the John Radcliffe hospital and also by helping to get as many extra people signed up to the organ donor register, fundraising and any research that I take part in, then I hope I can say that I have tried to do ‘my bit’, although I know it’s only in the tiniest way.

I walked across to the doctors surgery then to wait for my appointment with the nurse. I thought to myself, I know I’ll get a coffee from the machine that I had noticed in there before while I’m waiting and eat my banana for my delayed breakfast. But there was to be no chance of something nice like that happening! I discovered that the coffee machine only took card payments and when I got my purse out there was no card!!! Flip – I must have left it at home :/ So I decided to ask the receptionist if I could have a drink of water, she gave me half a small plastic cupful!!! I give up πŸ™ƒ

The nurse just put a Steri-Strip where my stitch had come out. She said it all looked fine.

I walked back into town. Thankfully it was a nice warm sunny day. I decided to treat myself to a quick visit to Caffe Nero as I hadn’t been successful in the surgery β˜•οΈ

I walked back home to get my car then (I thought I would now be okay to drive again) as it was time to visit my friend Sue, who is very ill with cancer. It was lovely to see her and her husband John again, they are such kind, lovely people. But it was also so sad and I cried as soon as I left and shut the door 😰

I couldn’t concentrate on anything else at all when I got back. I was just so upset to see Sue in that way, and John, who is not 100% well himself, caring for her so lovingly. 

I was very much looking forward to my weekly walk for a much needed bit of stress relief. It was a lovely long countryside walk again as we were lucky that it was yet another sunny evening.

Being able to walk through the fields right next to these lovely places also makes me realise how lucky I am to be able to do all this again. I know quite a few people who just aren’t so lucky 😦 Appreciate the simple things 😊

I found a great item of news on Twitter this evening, so I would just like to say congratulations to a Transplant surgeon from the Queen Elizabeth Hospital, who has won a top TV award for encouraging thousands of Asian people to sign up to the organ donor register. And that’s always a good thing πŸ˜€

Friday the 13th. Just a morning at work followed by the usual jobs at home in the afternoon and evening. Thank goodness nothing untoward happened. A much quieter day compared to yesterday.

TIRED 😴

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Tuesday 10th to Wednesday 11th May

So I woke up this morning feeling pretty dreadful. I thought I might be like this after my very busy few days. I was still very tired and my whole body was aching. And I had to go to work … 😏

As soon as I arrived I was asked if I wanted to work later today and as I always do I just agreed. But after I had been on my till for only a few minutes I knew I wasn’t going to be able to do it today so I told myself I shouldn’t be silly and I let them know that I just wouldn’t be able to do it 😠 

I found it very hard to concentrate at first, I think as my body was struggling and my head was definitely in a completely different place, as this was my first time back after a very busy few days.

I could also feel my stitches pulling as obviously my arm was getting a lot of constant use, for the first time since I’ve had them put in really.

It was a difficult shift to get through πŸ˜–

When I got back in the afternoon I basically just collapsed on the sofa!!! I kept resting my head back and closing my eyes and almost falling asleep but then I would make myself sit up straight again! I don’t think I was very productive at all for the rest of the day.

Wednesday, I still wasn’t feeling any better and had yet another shift at work to get through :/ 

It is great being able to do things and get out and about again. Before my transplants when I was suffering with ascites, I couldn’t even sit up without being in terrible pain and this time last year I was still very weak and unsteady on my feet, there is no way I would have been able to even contemplate doing any of what I have done over the last few days. So my life HAS improved in so many ways. It just seems to be that my body still takes a bit of a bashing and it takes me a little while longer to recover if I am active for long periods of time. And – let’s not forget, I’m pretty old now too πŸ‘΅

Yes I AM tired. But even despite that I’m not sleeping very well. Doesn’t make sense does it? Too much going on in my head I expect.

And just to keep you up to date with things, I still have the wart and it’s a week later now. It obviously has decided it’s going to be a very stubborn little thing ☹️

Left on the bus …

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Monday 9th May

Another early start this morning and another treat for Leah’s birthday. We were off to #westfieldlondon shopping centre in Shepherds Bush for a bit of retail therapy! As Leah has been on a mission to lose a bit of weight (and has done brilliantly) she has been saving for a while her birthday and Christmas gift cards and any present money she has been given, so that she can treat herself to some new clothes for her new look! And Westfield was where she wanted to go to spend all that money πŸ’·

We drove to Oxford and caught the Oxford Tube into London. If you get off at the stop in Shepherds Bush you are not far at all from the shopping centre. Definitely within walking distance.

So the shopping began. It was so hot in some of the shops we were all suffering a bit at times. Some nice things were bought πŸ‘—πŸ‘–πŸ‘Ÿ

Eventually it was time for a well earned lunch break. We went to Bills Restaurant in the outside section of the shopping centre. It was a lovely day and it was nice to get some fresh air. We were lucky enough to find an outside table in the sun where we could have our meal. Me and Leah had a lovely chicken burger with some sweet potato fries.


I really enjoyed mine. Robyn picked some kind of superfood salad but wasn’t that pleased with hers  πŸ˜¦

It was soon time to return to the shopping. I did manage to find myself a new shirt in the afternoon, as it had been looking like I was going to go home with nothing! The bags were increasing and I was getting tired, in fact we all were 😲


We finally decided to call it a day and started to make our way back to the bus. But then Robyn decided that she needed to call in to the supermarket and then stop at a cash machine on the way, which was making Leah a bit frustrated. We finally made it back to the bus stop. Robyn and Leah were in a little bit of a stress :/ I was just exhausted!

What a massive shopping centre that had been. We had literally walked miles. In fact 5.82 miles my Fitbit told me and 13,914 steps.

When we got back to Oxford and it was time for us to get off the bus to go back to our car, Robyn was dilly dallying about so much with all her bags that the bus driver drove off again! They don’t hang about! Leah had already got off as she was sat behind us, but I was trapped as Robyn was on the outside seat. So there we were stood at the bottom of the stairs, trying to keep our balance with all our bags and trying to get hold of Leah, but she wasn’t answering her phone. Thank goodness it was Leah that had got off as we had come in her car and she had the keys. It would have been even more of a disaster if it had been me that just got off on my own!! Leah eventually answered and we arranged to get off at the next stop and that Leah would have to drive to it and pick us up from there. She told Robyn off for not getting organised beforehand, she was NOT happy 😠

A bit of a stressful ending to a long and very tiring, but lovely, day. It could only happen to us I am sure. After they had both calmed down we did eventually laugh about it on the way home πŸ˜‚πŸ˜‚πŸ˜‚

By the way on a completely different note, I read on Twitter today that HIV infected organs are now able to be used in transplants. Click on the link to have a read of the article. They are obviously only allowed to be given to other HIV infected patients, but this does mean that more healthy organs will become available to all the non-infected patients waiting on the transplant list. Can only be good news all round πŸ™‚

Birthday girl Leah πŸŽ‰

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Saturday 7th to Sunday 8th May

The PBC Foundation is a nationwide group of people, all of whom are affected by PBC, which you can contact for emotional and practical support. Click on the link, scroll down and click on ‘Register with us’ if you would like to become a member too.

I had a phone call earlier in the week from the Regional Co-ordinator inviting me to the local group meeting. It was nice to meet some other people that are suffering with the same illness as me, although they all seemed to be doing really well, none of them are anywhere near the transplant stage, so I did feel a bit ‘different’. All the others had been before and knew each other quite well so I was the new girl, but everyone was very friendly. We just sat chatting. We had a nice lunch and as it was a warm sunny day some people sat outside in the garden and some were inside. It was very relaxed. Everyone takes a prize so they can have a raffle too. I will look forward to the next meeting.

In the evening me and Gary went to watch Robyn’s boyfriend Tom play the drums in his band Dance a la Plage at the O2 in Oxford. There were other ‘rather loud’ bands playing too, some better than others!


See, I’m not too old just yet to go to a live music concert, although my back was killing me at the end of it from just having to stand up the whole time :/

Sunday – HAPPY BIRTHDAY LEAH 🎁

An early start to the day. The two cars were decorated with balloons and banners. And then we were off to Go Ape in the Forest of Dean. Leah, Jack, Robyn, Julie, Hannah and me! It was a lovely hot sunny day so we had all arranged to take a picnic with us too.

Yes, Leah had chosen to spend some of her birthday doing a Tree Top Adventure. Thank goodness I had an excuse not to do it, the stitches in my arm of course! And to be honest, I really don’t think I would have the strength to do it even if I wanted to. And Julie had done it before and didn’t like it at all so she refused to do it again. So it was just the four young ones that got their harnesses on, went through the training and then onto the course! Us two old ones walked around through the trees below them, taking the photographs πŸ“Έ

They had a great time. They all did really well. And they had all certainly worked up an appetite ready for the birthday picnic. We sat by the side of the lake, it was really lovely. Leah at last got to open a few presents and Hannah had brought her a cake so we could sing Happy Birthday 🎢 The sun was shining brightly. Leah had definitely had a great day for her birthday πŸ™‚

We didn’t get back until early evening. The sun was still shining so we sat in the garden for a while and Leah got to open a couple more little presents. Lucky girlie 😝

A nice family day πŸ‘

A busy weekend and there was still more to come!

‘Flower Festival’ afternoon tea

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Thursday 5th to Friday 6th May

The back of my arm was still a bit sore today and I still needed to be careful with it. I had been warned not to do too much by Robyn before she left for work.

Thank goodness I was going out this afternoon anyway or I would have been going mad and would have ended up doing things I shouldn’t! I was looking forward to my treat today, especially after my stressful day yesterday. I was going for a complimentary afternoon tea and luckily my friend Nina, who I had invited to come along with me, had agreed to drive as obviously I wasn’t allowed. We were going to the #lygonarms – a hotel in Broadway. This is where I had arranged a spa day as a Christmas present for Robyn, Leah, Julie and Hannah. After our visit to the spa earlier this year I had tweeted to thank the hotel for a great time and to say that it was really good for my recovery from two liver transplants and the hotel had then replied and said they would give me a complimentary afternoon tea. How kind is that 😊

We had a lovely afternoon. Really quite relaxing. We were there for ages. I didn’t want to leave.

You get a variety of different teas to choose from, you can have coffee if you prefer, and you can even add champagne if you want something extra special.

And there are different afternoon teas every month. We had the May ‘Flower Festival’ tea.

The sweets were cherry and chocolate tart, vanilla panna cotta with kiwi jelly, strawberry and elderflower mascarpone mousse, rose water macaroon and asparagus cake. The sandwiches were ham and mustard, smoked salmon and cream cheese, seasoned cucumber and egg and mustard cress. Then there were fruit scones with clotted cream and strawberry jam.

I really do recommend that you have one of these delicious afternoon teas at The Lygon Arms if you get the chance.

From their menu I also read about the history of afternoon tea so I thought I’d share this bit of information with you too! 

“Tea consumption increased dramatically during the early nineteenth century and it is around this time that Anna, the 7th Duchess of Bedford is said to have complained of ‘having that sinking feeling’ during the late afternoon. At the time it was usual for people to take only two main meals a day, breakfast and dinner at around 8oclock in the evening. The solution for the Duchess was a pot of tea and a light snack, taken privately in her boudoir during the afternoon.

Later friends were invited to join her in her rooms at Woburn Abbey and this summer practice proved so popular that the Duchess continued it when she returned to London, sending cards to her friends asking them to join her for ‘tea and a walk in the fields’. Other social hostesses quickly picked up on the idea and the practice became respectable enough to move it into the drawing room. Before long all of fashionable society was sipping tea and nibbling sandwiches in the middle of the afternoon.”

Just a little bit different to how we live our lives today isn’t it? πŸ€”

I got back to my house to find Doreen knocking at my door for our Thursday evening walk. So I rushed inside, changed my shoes and went straight back out again! It was a warm, sunny evening so we went on a lovely countryside walk.


My Fitbit tells me I had walked 6.11 miles today so I reckon the walk this evening was somewhere around 5 miles maybe. I certainly had done way over my 10,000 steps for today anyway, which has become known as the recommended amount of steps you should try to achieve in one day to help to keep yourself active.

A bit more of an enjoyable day than yesterday wasn’t it? πŸ€”

Friday was my unexpected day at home as I wasn’t allowed to go to work. I did lots of little odd jobs as I haven’t been able to do much for the last couple of days and I knew I had a busy weekend coming up. I can’t just sit around and do nothing, it drives me mad. I was careful with my arm though and it was still sore so I couldn’t move it about too much.

Stitches

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Tuesday 3rd to Wednesday 4th May

Tuesday was just a normal day spent at work and then at home. I knew I had a busy time ahead of me in the next few days!

Urm, I think I might have found out why I have a very sweet tooth. I am going to blame my ‘birth liver’ as it seems I might have been lacking a hormone FGF21 during all the years it wasn’t working properly which made me have sugar cravings!!! I don’t know what excuse I can use for eating too much chocolate now I have a great new liver which is working very well though :/ But on a serious note, have a read of this interesting article Liver Hormone. This important finding from recent research may end up helping many people.

Wednesday. Mole removal day!

I had to be at the Churchill hospital in Oxford for 10.00am which meant an early start. The traffic around Oxford is always bad, and now there is a whole load of roadworks going on, which just adds to the chaos :/ I had sorted my bus journeys out as I wasn’t going to be allowed to drive myself back after the operation. Then at the last minute Gary said that he was able to take me and bring me back, so we set off at around 8am.

The doctor injected the anaesthetic into the back of my shoulder. Ouch, that did hurt a bit but then gradually faded. She gave the area a good clean – and then cut out the mole! I did ask if they could take some pictures while they were doing it so I could share them with you here on my blog, but she said that it would be quite difficult. Sorry :/ I could feel her spraying lots of something into the ‘hole’ I’m guessing and then she put the stitches in. She said she would then give it an extra clean.

    Before                                                                           After


She then asked me if I had got time off work as I wasn’t allowed to move my arm too much. Because of where it was, there would be a lot of movement in that area, and the stitches might come apart! I wasn’t expecting any of this, I thought I would be fine to use my arm, so no I hadn’t booked any time off :/ She gave me a note to give to my boss. She also told me that my daughters had to make my meal this evening and wash up and that she was prepared to write them a letter πŸ˜‚ I had to keep the wound dry for at least 48 hours, when I could also take the dressing off. I needed to keep an extra eye on the wound and be careful of infection (because my immune system is suppressed from my medication).

Then it was time for my next treatment! It seemed like my wart had decided to become very stubborn and nothing at all had happened to it since my last appointment when the doctor had used the liquid nitrogen on it. So I told this doctor and she agreed to give it another go, saying sometimes they can be hard little things to get rid of. This time the wart went white immediately so I am hopeful that it will come off very soon, fingers crossed πŸ€”

When I got back from the hospital I then went straight to the surgery where the Citizens Advice Bureau hold a drop in session on a Wednesday. Time for a bit of stress for my brain now! I wanted to just see if they had any advice for me or any different ideas about having to find somewhere else to live or if there was any financial help I could get. Basically I was told no. Mainly because my two daughters still live with me, but because they are over 18, both work full time and they are not dependent on me, it means we don’t really stand a chance. So it looks like we have to stay in privately rented accommodation, which in this area costs an absolute fortune, and ‘budget’ she told me to pay this and all the bills!!! She was talking to me as if I didn’t know how to do this. I’ve had a house to look after since I was 19. I think I know how to do things in this area by now! I was a very despondent Pinny when I came out of there 😧

I then had a doctor’s appointment in the afternoon. I just moved to a different area of the surgery and sat and waited. And waited. And waited. I ended up waiting for over an hour for my appointment :/ 

A bit of a long walk back into town but that’s one thing I didn’t mind as the sun was shining and I got a bit of fresh air to help clear my head a little. A visit to the shop and I finally made it home.

You could say I was a bit fed up when I got in and rather tired. A lot had happened today, I had spent the whole day going from one thing to another. And to top it all my arm was beginning to come back to life and was quite sore.

I don’t think I moved very far from the sofa this evening πŸ€•