Tuesday 29th to Thursday 31st March

Tuesday was just time spent working.

You’re doing a good job Click on this and have a read of this article. I can remember that I used to find the times after my various doctor and consultant appointments quite tough. Near the beginning of my illness it used to bring it all back into my head even more that I wasn’t the same as everyone else, I had an illness that was going to get worse and would probably lead to a transplant. But then I would go back to work, get on with normal day to day life and put it to the back of my mind at times, waiting until the next appointment or test, when it would all come flooding back again. Then as the illness progresses, the medication gets more and more, work gets harder to cope with, some days you feel very ill but you try to get on and be as normal as you can. Some days are so hard to get through. So this is a message especially for any of you reading this that are suffering yourselves with a difficult illness, and whatever you may be doing to try and get through it, don’t be so hard on yourselves, you ARE doing a good job.

On Wednesday morning I went off to work. I was looking forward to some little visitors coming this evening, my niece Claire’s two little girls Tia and Freya. They were coming for a sleepover with Robyn as she had a few days off work and they were on school holidays.

Almost as soon as they arrived they wanted to take our dog Jake out for a walk. Jake is very old now and suffers a bit with his legs so can’t walk very far. But as it was a nice evening we decided to just take him for a little walk around the block. He made it just fine and it kept the girls happy too!!

We also walked along to the shop to buy them some sweets and called in to see Julie and Hannah briefly on our way back. Robyn’s plan then was to take them up to her bed where they were all going to be sleeping, put a dvd on and she thought they would soon fall asleep. I think they had other ideas though. Tia wasn’t too bad apparently but the little one Freya seemed to be quite happy having a good old chatter for quite a long while 😬

Then they were still all awake early so Robyn got herself up and got the breakfast ready, which was pancakes with lemon and sugar! which she took back upstairs to them, so Tia and Freya were even lucky enough to get breakfast in bed!!

Thursday was forecast to be a reasonably nice day so we decided to take Tia and Freya to Millets Farm Centre where there is a nice farm shop, restaurant, garden centre, craft shop, farm animals, play area etc. Probably because it was the Easter holidays I think, they also had a carousel and some trampolines which they had a go on and we also did a Easter hunt so that Tia and Freya could get a free bun from the Easter bunny’s hut and do a craft activity at the end. We took a mini picnic with us too. We had a nice time.

 
Freya wasn’t too pleased when her mum turned up at the end of the day to collect them, she wanted to stay with Robyn again. But poor Robyn was exhausted when they left 😂

So during this whole month I have been wondering to myself what March normally looks like! As the whole of March 2015 was spent in my different hospital beds We have had some nice days of sunshine. I can remember one day especially being nice too while I was in critical care as they turned the bed round for me so I could see out the window. Because of my ‘crazy times’ I saw different things to what were really out there though! I thought the people I could see walking about had been out shopping and were returning to their cars in a multi storey car park. It was in fact the Birmingham Women’s hospital just opposite the QE. I also saw a massive black hammer on the top of the ‘car park’, which I thought was something to do with Gary’s work (he’s a tool salesman!), but it was just part of the building. I think looking out did upset me that day though as I can remember shouting to the kids ‘take me home, I want to go home’ over and over and that the nurse that was looking after me came over and said ‘hey what’s going on, we’ve had a nice day today’. She was one of the chatty nurses and I can remember her talking to me all the time. I think she was the one that told me she had actually been to stay on the campsite just outside Chippy where I live. I can remember her so clearly. In my mind she had slightly frizzy gingery coloured hair all tied back. I also thought she was the mother of someone that lives in our town! I would love to see her again. There was also another nurse working alongside her and they were stood talking about what she had done and things, I think she had worked elsewhere and was new to the QE, and I can remember her saying to me ‘don’t worry I am qualified’. Oh dear, what fun times I had 😣

This March, as well as working and all the normal day to day jobs, I have been able to get out and about. I’ve been on a few nice walks, I’ve been to a spa, I’ve visited the theatre and I’ve almost been to a football match! A bit of a difference 🤗

Friday 25th to Monday 28th March

Good Friday morning and off I went to work, while everyone else had the day off 😠 Then back to get on with jobs at home. So just a normal day for me

I did read a very moving article in The Guardian newspaper though. This made me cry. Click on the link and have a read. I don’t think I need to add any of my own comments to it.

Easter Saturday was just spent doing a bit of shopping.

I was extremely pleased when I found out it was going to be a curry Saturday.

 
YUM YUM YUM 😋

On Easter Sunday I was spoilt by Robyn who gave me this.

  
And I was also spoilt by Leah who gave me a yummy selection of chocolate biscuits and sweets 😃

We had been invited along to Julie’s for an Easter egg hunt and we had also all been asked to think of a game for everyone to play and provide the prize! My game was an Easter Sudoku puzzle and I had found a #Marmite chocolate Easter egg for my prize! We had a fun afternoon. And we were lucky that Hannah had made another one of her amazing delicious cakes.

 
Love the pic Han 😂

Bank Holiday Easter Monday was just a day spent between being at home, being at Gary’s and being at Julie’s, eating some more of that delicious Easter cake 😋

Wednesday 23rd to Thursday 24th March

Work today. My poor old body was aching. I’m guessing as a result of the aqua aerobics on Monday

Then after being at home for a little while we set off for Oxford. A look around a few shops, into Ask restaurant for a lovely pasta meal and then it was time to make our way to the New Theatre where we were going to watch Goodnight Mister Tom 🙂

As always, something had to happen didn’t it? I got my bottle of drink out of my bag, unscrewed the lid and it all fizzed up and squirted out the top, over the leg of the lady sat next to me!!! Rather embarrassing but so funny too 😂

Anyway the play was good!!!

Thursday was spent at home trying to get a few things done as in the evening I was off to the theatre again, but this time to Chipping Norton Theatre. I was going to see Jessica Thom in Backstage in Biscuit Land which is touring around the country. It is raising awareness of Tourette’s syndrome in a lighthearted way. I found the show fascinating. I have never seen anything like it before. A tub of biscuits even got passed all around the audience so we could take one if we wanted! I really do recommend that you go to see the show if you get the chance.

Jess Thom has Tourette’s syndrome which is an inherited disorder where people can suffer with both physical and vocal tics. Many people with the condition isolate themselves to avoid the staring, which is very sad but I can completely understand why they would want to do this.

Jess at the moment involuntarily shouts out the word ‘biscuit’ thousands of times a day. Also hedgehog is another popular word. But these do change. Anything that she experiences can become a tic. If she tries to hold the words in it becomes uncomfortable like trying not to blink. When I have watched programmes on the TV about this in the past, the people I have seen all seem to shout out swearing words, which I do think is what most people associate the condition with and shows Tourette’s in a completely different way. But only 10% of people with the condition actually swear. I had no idea about the fact that people can also get involuntary physical movements too. Jess constantly hits her own chest and wears padded gloves to protect her knuckles. And now she also needs to be in a wheelchair as her legs twitch so badly. I did think to myself while I was sat watching the show just how exhausting this all might be?

Jess is also known as Touretteshero, which she created to make it easier to talk to children about Tourette’s. This month she is staging a Tourette’s awareness day at Tate Britain. She also raises awareness through her blog Touretteshero and her website.

It can’t be easy. I think she is doing a great job 🙂

One year ago today I left the Queen Elizabeth Hospital in Birmingham. Here is my very shaky exit (still in my pyjamas!!!)

I can remember that I was very determined that I would walk by myself out of that ward. I’m not sure it shows just how tough it was for me.

And a hug from just one of my hero surgeons was a bonus 😀

And so today, a year later, I have been able to go on a two and a half mile walk through our lovely local countryside in the warm Spring sunshine. How lucky am I?

Massive thanks and respect to my two donors and their families.

Monday 21st to Tuesday 22nd March

This morning Robyn, Leah, Julie, Hannah and me! set off to the Lygon Arms hotel in Broadway. We were going to have the spa day that I had bought everyone for Christmas.

   😂

We all got straight into the jacuzzi. It was so hot to get into at first, just lovely. Then we all joined in with the other ladies who were doing the aqua aerobics class. It was great fun. We also did a bit of swimming, messed around in the pool and got ourselves a complimentary tea or coffee while we just sat about relaxing on our lounger chairs. At this point me and Hannah would have really liked a bit of chocolate or some biscuits to go with our drink! but they didn’t have any anywhere 😠 Note to myself, I must remember to take some snacks with me on my next visit to a spa!!! Then it was time for lunch. We went through to the restaurant in our robes and slippers, getting a few funny looks from the other hotel residents! We had to wait rather a long time for our meals to come which was a bit disappointing as we only had a certain amount of time. I did enjoy mine when it arrived though, I had chosen fish and chips. It came on one of those wooden boards that meals often seem to come on now when you eat out. I think the waitress must have tipped it just too much as the little pot of peas came sliding off and went everywhere, mainly all over the restaurant floor 😂 Poor lady! And Julie and Hannah only just had time to finish their last mouthful before they had to rush back to the spa for their treatments. We were all having the same – a back, neck and shoulder massage followed by a facial. They were spread out at different times through the afternoon though as they didn’t have enough therapists to do us all at once.

We all then had a final shower and got back into our normal clothes. I did feel quite refreshed and it was nice to be finally dry again! Hannah, Julie and me were finished first so we went back through to the hotel and had a cup of tea while we were waiting for the other two. Hannah had already been out to one of the shops on the high street and bought us some little shortbread biscuits. Yes, at last! Yummy 🙂

A nice day, but then it was time to go back to reality

Also a reasonably relaxing day with just a little bit of exercise too, but I was exhausted 🙃

So then Tuesday was back to a normal day of work and home.