Pain, it’s all Relative

an image of two white pills and the word pain

I had my IVIG in hospital last week. It was a good day, I met a new friend and we talked a lot. It was good to find someone that understood, that I had something in common with. It’s sad that that common feature is pain.

The weekend was not so good. First I had the migraine which is a side affect from the IVIG. I’ve not had one for a while so I’m thinking they may have pushed it through at a faster speed. They were incredibly busy and understaffed on the ward, so this is feasible. Then on Sunday I had this pain in my chest which I believed was the start of a chest infection.

By Tuesday I was in the hospital, but there is not much they can do as I don’t tick all the boxes for something treatable. I have a rare condition and no-one knows what it can or can’t cause, or how to treat it. 

The pain has continued throughout the week, with nothing making it feel any better. It’s just something I’m getting used to dealing with, just like I have to with everything else this ridiculous condition throws at me.

The time is approaching for the visit with my consultant so I’m busy scribbling down everything I want to ask. And everything that has happened since my last visit six months ago.

Then I have another appointment with a different professional just to see if they can help me with my heart arrhythmia. Which may be why I’m getting chest pain.

I’ve not really done much this week. Even the Little Man has had a couple of days off Home School as I’ve not been up to teaching him. It’s okay to let him read or do math puzzles instead, but I feel like I’m letting him down. 

But it’s not just me, Graham has been unwell too. He’s had a pain in his neck and an awful migraine. And this morning Star was complaining with neck pain. I’m hoping she just slept in an awkward position and that it has eased by the time she comes home from school. Because of her cervical spine surgery we have to be vigilant when she complains of neck pain. 

I’m beginning to wonder who will be next?

I’m hoping that next week will be relatively pain free! 

How’s your week been?

The Reading Residence Debs Random Writings

The Christening, and my first time as Godmother

I guess this week has been dominated by the Christening of my husband, friend and her two little boys. I was asked to be the boys Godmother and my husband their Godfather. However, we had to be christened ourselves to take this role and my hubby wasn’t, that’s why he was Christened at the same time.

I am a person of faith, but I’ve not attended church regularly since we moved house. Before I was a member of a church family for years and I always felt comfort in my faith and my other family. When you are part of a community church there is always someone to turn to.

I was overjoyed to be asked to be a Godmother to my friends boys, this is the first time anyone has asked me. The boys are aged 8 and 1 years and I met them when my Little Man was in the same class at school as the 8 year old. Both boys have moved from that school now but we’ve stayed in touch. 

I wanted to give them something for their special day but all the gifts seemed to be aimed at babies. So I made gifts myself.

I’m thinking now that I should have spent a little more time photographing them better! This is my first attempt at anything like this, but I did enjoy making them and they were well received. Their Mum even shared photos on Facebook of the little gift tags I’d made myself and attached to the wrapped frames.

The Christening.

The christening was held in St Nicolas Church which I’ve posted about before as it’s such a beautiful building. 

The service was really nice and my girls seemed to enjoy the hymns very much, singing at the top of their voices.

12th August 2018

The Meatless Carvery

After the service we all went to a local carvery which had been pre-booked. When we all arrived they told us that they were having a problem with the meat and didn’t have much on offer so would offer us a discount on our bill.

They were not wrong, there was a little gammon and some chicken breast on offer. They even bought out a tray of sausages. It was kind of funny, a carvery with no meat! We all managed to fill our plates with a little meat and loads of veggies. Boo was the clever one and ordered spaghetti bolognese! Then we all had desert and waited for the bill. Yes, the food had not been so good but the bill was £57 for 7 adults and 10 children. I guess we couldn’t complain.

My word of the week this week is Christening because it was such a wonderful event. In other news I have been washing and packing because on Friday we will be off on our long awaited holiday to Devon.

Debs Random Writings
The Reading Residence


Shopping Until I’m Dropping

Day Out

After a fairly chilled out week last week we decided we’d had enough of sitting around and went out for the day on Saturday. Well, I say the day, we actually didn’t leave until after lunch. Two reasons for this, I didn’t want to spend any more money than necessary and the kids didn’t really want to go out. I mean, how cruel of me to drag me away from their electronic devices!

So, we ventured out to a National Trust Property, Baddesley Clinton, which turned out to be only half an hours drive away. It was a gloriously sunny day and it was just so nice to actually get out side in it. It was also really nice to get inside the cool house after five minutes of leaving the air conditioning of the car.

We did spend some time in the garden in the shade though, soaking up enough vitamin D to last us another week.

On Sunday we rested. As you do.

(Well, if you don’t count the washing pile that put Everest to shame, or the Sunday roast I decided to cook, or the bathroom that was definitely in need of a scrub before the round of showering kids scummed it up again.)

Shopping

Then it’s been non-stop. Shopping, baking, doctor visits, dentist appointment, more shopping, even more shopping and barely a moment to snap open a laptop.

If you are wondering why all the shopping wasn’t done in one go then I need to explain. First up there is food shopping which is quite necessary. Then there was birthday card shopping, a total of 10 cards were purchased. Oh, and we decided that it would be a nice idea to visit the toy store so the Little Man could spend his birthday money, and the girls could spend theirs. The joys of having three kids’ birthdays in the space of four weeks! One is ‘the birthday yet to come,’ but as we will be on holiday we let her have some money early, and the other is the ‘birthday past,’ but we kept back some money especially for this spending spree. The Little Man has his birthday this week, ‘the birthday present,’ but we went shopping a couple of days earlier so he didn’t feel so bad about his sisters having presents on his special day.

Oh well, it made sense when I thought it all up.

Then more shopping because I had to go to Hobbycraft for supplies. I have a Christening to go to on Sunday, it’s quite a special one as we are going to be the Godparents. I’ve never been chosen as Godparent before and I wanted to get something special. Only I couldn’t find anything that didn’t break the bank, so I’m making something myself. I’m a bit worried about it now, but I’ve been assured that it looks good. I’ll show it to you later, if you want me too.

So, I guess the word of the week this week has to be Shopping! 

a stylish woman holding up a hoard of shopping bags
Photo by freestocks.org on Unsplash

Debs Random Writings
The Reading Residence

I’m So Tired

Tiredness

Last week I was waiting, mostly for the school holidays to begin, well I’m waiting no more. Although it may have been silly of me to expect a little longer in bed in the morning. It’s the Little Man now, he likes to get up around 6-6.30am.

And I’m tired.

I’ve tried going to bed earlier but the heat means it takes me a while to go to sleep. Also, one of our neighbours has barking dogs that seem to go on all night.

I keep falling asleep during the day, but that’s no allowed. For some reason every member of my family believes it is their duty to make sure I stay awake all day. Seriously! If I fall asleep I get woken up to words such as ‘Mum, you fell asleep!’ Or ‘Anne, you fell asleep, do you want a coffee?’ Why don’t they realise I’ve fallen asleep because I am tired? Or is that too difficult to understand.

IVIG

I was so looking forward to my IVIG this week. I’d had a really rough weekend where I’d barely been able to do anything (well, apart from the cooking, washing, cleaning etc.) I was also thinking that my tiredness might be due to the sudden worsening of my condition.

I went along to the hospital for my appointment and I immediately felt a wave of tiredness envelope me before I’d even had the cannula put in. I managed to stay awake though and then when my infusion was up and going I pulled out my phone and headphones and put on an audio book. I’m listening to Sherlock Holmes read by Stephen Fry. Within minutes I was fast asleep.

There is nothing wrong with falling asleep in the hospital, a lot of the patients do it. But I was woken up by the nurse calling my name, then asking me a daft question which I know I’d already answered. It felt like I was at home, being woken up for no reason. Then it dawned on me. What if I was snoring loudly? I know I get woken up at home to be told I was snoring, so maybe the nurse woke me because I was snoring? I was too embarrassed to ask.

Sleep

Last night I went to bed early and the dogs where not barking. I fell asleep straight away and although Graham woke me when he came to bed I wasn’t awake for long. The Little Man came in at 6am and I was still tired so I persuaded him to climb into bed with me for another 1/2 hour.

I’m not sure if it helped though. I’m still feeling tired today. Maybe I need more than one fairly good night?

It may be the heat, I’m sure it causes fatigue. My tiredness is not like normal tiredness, it creeps up on me suddenly and it’s so hard to ignore. I’ve fallen asleep watching television, on the laptop, while crocheting, and I’ve struggled to stay awake while eating, while in the car (as a passenger, I’m not driving at the moment) and even while on the loo!

Plans

I’m hoping my plans for the rest of the week will help to keep me awake. I have a birthday cake to make and decorate for Boo, she wants a rabbit themed cake and has already made a little fondant rabbit topper.

I have some shopping to do and we are off to the supermarket this afternoon.

Friday we are having a birthday tea for Boo and a couple of her friends. It is not a party, just some party food and cake.

I also plan to sort out the bedrooms, we have a new chest of drawers for the girls room that we can’t fit in at the moment because of all the toys that they don’t even look at any more. Yes, it’s definitely time for a big clear out.

My word of the week this week is tiredness, but with so many plans I am hoping to shake it off!

a koala bear asleep in a tree

Photo by Cris Saur on Unsplash

Debs Random Writings
The Reading Residence

 

This Week I am Waiting

New Sofas

Do you remember my new sofas from six weeks ago? Well, even though I really like them, the rest of the family had mixed feelings and now we have ended up swapping them. We had to wait for the new ones to be made but I think they are worth it. The new sofas are a bit different because even though they are leather, they have fabric seats and backs. (Not cushion backs, I’m sorry but they would drive me insane.) They arrived on Monday morning at 7.30am. Just as we were getting the girls ready for school!

I believe everyone is happy with the new sofas. Well they had better be, I’m not changing them again. I’m just glad I was able to change my mind with no issues this time.

Sports Day

The girls are having sports day this week and they are both really excited about it. I was never a sporty person and I hated P.E. and sports day. The only game I really liked playing was rounders. I was good at the long jump, especially having longer legs, I barely had to put in any effort to get further than anyone else. I was rubbish at short distance running as I was a slow starter. I did manage to keep up stamina in longer races though. I can’t remember ever winning anything.

School sports day these days are much more fun, and the girls love them. Star can’t take part in a lot  because of her Elhers Danlos Syndrome. She suffers from tiredness, dizziness and joint pain. She does try as much as possible though and still has fun. The school is brilliant with her, if she says she can’t go on they let her stop.

Boo loves sport, she’s not the best at most things but she tries really hard. I’m hoping that she wins something as I know she will get a real boost if she does. I’ll be waiting impatiently to hear how she does. Daddy is going to watch her.

Update: Both girls had real fun on their sports days, no medals were won but they really enjoyed themselves. Boo did get a trophy at the year six leavers assembly, for being ‘Artfully Creative.’ Now, I’m waiting for them to come home from their last day at school…yay!

Holiday

It feel like I’ve been waiting for this Summer holiday for so long! We really deserve a rest from school. Can you believe, I have spent a whole term home educating the Little Man. He’s done really well and we have folder full of work to show the LEA when they come to check on him. As well as all the curriculum work we’ve also enjoyed learning about electronics, rainforests and magnets. We have even fitted in a little Quantum Physics!

He’s been reading a longer book than usual, Kid Normal by Greg James and Chis Smith. We can’t wait to see how the book ends.

The summer holiday is looking really exciting for us. We start with Boo’s birthday, I’m not sure what we will be doing yet but I do have her presents. Then we have a charity gig to go to and Graham will be on stage doing his part.

Next up is the Little Man’s birthday and I’m really hoping we can get out for the day. We have yet decided where to go  but I’m sure it will be fun. I have most of his birthday gifts ready.

Mid August we will be going on holiday, it’s a camp in Devon that we went to 8 years ago. Before the Little Man was born. We had such a brilliant time there that I’ve been waiting for a chance to go back and now I won’t have to wait too much longer.

After the holiday we still have some excitement as it will be Star’s birthday before they go back to school.

Rain

I think that when it rains it’s going to be so welcome as we’ve waited for so long now. It’s just not the way we expect our summer to be is it. We had a tiny bit of rain the other day, I was actually sat in the garden and felt it. Sadly, it was not enough to even leave the patio wet.

I want to it to rain now, a nice big downpour to bring back the green!

Then it can go away again and give some more weeks of glorious sunshine. I’ve never been a summer lover but I have to admit, I’ve felt so much better in the heat, the usual aches and pains are really not so bad. I can see why chronically ill people decide to move to hotter climates.

IVIG

IVIG, is the treatment I receive for my condition. I have it by infusion in hospital once a month and it seems to be helping. Before I used to have to wait 3 months for a treatment, but the monthly one is working much better so I’ll be telling my consultant at my appointment in October. I have been waiting patiently for my consultant appointment, I’ve been doing some research and want to ask him about some other treatments.

There won’t be too much waiting for my next treatments though. I have one next week and another the day before we go on holiday, how brilliant is that! Having it monthly also seems to reduce the side effects because the dose is smaller.

 Waiting

Hand holding a watch

Photo by Jaelynn Castillo on Unsplash

My word of the week this week is waiting because I’m waiting for so many things, thankfully they are all good.

 

Debs Random Writings
The Reading Residence

 

A little Note About Positive Reviews on Raisie Bay

A little Note About Positive Reviews on Raisie Bay

Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I’ve also seen negative feedback with say things like, I had to return this item because the colour did not suit me…is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I’ve loved. If I don’t love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It’s always the latter.

This is my blog, my place and I’ll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.