Good care matters - my experiences of receiving care

I've had support from carers for several years now and over that time the care that I've received has been varied from wonderful right down to horrendous experiences of care so I've come to realise that good care matters.

Last week my PA was on leave and my Dad and stepmum were away for a few days and I had to resort to using a care agency again to pop in, check I'm okay and to help me out with tasks including getting washed and dressed, taking my medication and preparing meals and drinks.

I was quite anxious to say the least about having a care agency as the last care agency I had when I first got my care package was awful. Half the time I wondered why many of the carers where woking in the job and I never received the amount of time I was allocated and I was often rushed, essential tasks missed like not being given my medication or having a drink. Carers were always consistency late too, especially at bedtime as bedtime is when I'm at my worst. I also need go to bed fairly early so I can get as much sleep as possible to allow my body to function during the day. All-in-all it was making me ill and I was miserable and though I needed the care I couldn't take putting up with this "care" any longer. I was then approved to have my care provided through direct payments which allowed my previously privately employed PA to come back and continue to work as my PA. Currently I'm trying to get additional PA's to my care team as I need care 7 days a week and also to have different PA's to cover for each other for when one is ill or on holiday.

Anyway last week for a few days I had a different care agency. I couldn't have faulted the care I received. I felt that my care needs and wishes where fully met and I was treated with respect and individuality as a young adult who just so happened to need a little help to be able to live their life. I was allowed to choose how I spent my care such as having a bath over a shower, how I like to have my hair washed and my other routines that I like when getting washed and dressed or little things like how much cumber I had in my sandwich. Little things like this when you need a hand with things matters and it makes me feel empowered especially because I need help with things that most people my age can do on their own. For example with my bath I can't bathe on my own but being able to chose what products I use and the order of at one point I'm wanting my hair washing, or when I wash my face or when my body is washed gives me as much control with support and enablement.

My illnesses don't yet have a cure and at 28 it can be difficult to need help to manage different aspects of my life. However good care helps me feel just that little bit more in control of a life I have little control over. Good care make me feel better an it improves my quality of life just that little bit better too both physically, socially and emotionally.

Receiving good care has made me realise what an amazing job care work can be. For someone needing care though it can be hard unfortunately to find good care at times. Thankfully most of my experience of receiving care has been good but like I mentioned I've had my fair share of bad experiences. Not just with community care but when I've been in hospital too and I've heard from home care workers their own experiences of seeing poor care from other carers. Often I've found it depends upon the care agency. The agency I had where I had an awful experiences there where some good carers but on the whole most of the "carers" to me seemed to be working in the wrong industry.

I've always felt and said that carers need greater recognition for what they do as well as to be paid more than just the national minimum wage to reflect the big difference they make to many disabled and chronically ill people's lives. I don't get how someone working in a supermarket can earn more than a carer or a personal assistant. Personally the latter is a much more worthwhile job.

I want to raise more awareness of the role carers play. To help with this I plan to vlog some of what my PA supports me with to give people an insight into the role and the variety in what the job entails. Such as today (Monday 21st) my PA has made my breakfast, supported me to wash and dress, taken me to a nurse appointment for some pre surgery tests. We then went for a drive-thru coffee and came back to get some lunch. How's that for variety! I wish I'd filmed today but hopefully when I have another day like today I can film it but at the moment I've not been well enough to be able to do the editing for YouTube videos so I've been using some videos I made a while back and I'm feeling wiped out from leaving the house.

'Dear Body' by Hannah Hodgson - Poetry review

Rating: ★★★★★ out of 5!

‘Dear Body' is a poetry pamphlet written by Hannah Hodgson. It was Hannah herself who got me interested in poetry through her YouTube channel where she shares videos of book and poetry reviews as well as sharing her own story of living with a life limiting illness and being a palliative care patient and hospice user.

Hannah's YouTube channel is linked here.

I've started to read other poetry but 'Dear Body' was the first piece of poetry that I actually understood and I liked the the different styles in which Hannah had written her poems to exaggerate the topic of the poem, such as the poem 'Processing' where there where very spaces in-between each word to emphasis the difficulty in processing thoughts due to poor concentration and focus.

As well as 'Dear Body' containing poetry I could understand and grasp it was also a collection of poems I could relate to on a very personal level so the poetry collection was even more emotive. It help creatively speak out my own thoughts, feelings and experiences of living with challenging complex health problems. Of how disability is visually left out because it is not a picture of beauty, the marks and scars left on ones own body, the frustrations of living in a body that is broken and a mind that struggles to function, the invisibility of our symptoms and so much more.

Hannah also guest blogged for me a while back and in her post she shared one of her poems 'Invisible'. The post by Hannah which was shared for World Poetry Day can be found here.

If you're interested in poetry or are new to poetry, or to those who are chronically ill or disabled and want to read something relatable then I would defiantly say that 'Dear Body' is a good poetry pamphlet to turn to.

You can purchase 'Dear Body' from Wayleave Press for £5 - link here.

Dealing with boredom when I'm having a bad day

The reality of severe M.E

I have severe M.E; it's a neuro-immune condition that has many different symptoms. M.E affects about 250,000 people in the UK of all ages and around 1 in 4 people will be severely or very severely affected.

I have variable good and bad days. On my bad days it can be a real struggle; my pain levels increase and I'm much more sensitive to light and sound. My mobility is also even more reduced also side worsened orthostatic intolerance and autonomic issues mean that I have to spend most of my day laid down. My cognitive function and brain fog is also more of a challenge. All these things are present most days but they're more pronounced on my bad days.

The things I can manage to do on a good or even average day is reduced so what I do to entertain myself is more challenging so I have to find ways to avoid boredom whilst managing my different symptoms and trying to also distract myself from how I'm feeling not just physically but emotionally too.

One of the main ways that helps me deal with my boredom on my bad days as I lay in a dimmed room is listening to audiobooks and podcasts on a really low volume and I often put in my noise cancelling earplugs to block out the painful background noise and then put on my noise cancelling headphones or my headband earphones so I can just have the low volume of my book or podcast playing to me. I also like options from the book I'm listening to and then the wide variety of different podcasts as I can struggle to focus on one thing for too long sometimes. Especially with podcasts there's lots of different one to choose from in terms on genre and topics whether it be a series or something like a documentary or a chatty style podcast and with these each episode has a different focus. This helps as generally podcast episodes aren't too long so that helps me with my concentration difficulties. 

Usually I can tolerate listening to books and podcasts but if I can't because for example my noise sensitivity is too much or I can't concentrate or I just want something different to do I use my imagination. I play games in my head especially Carcassonne, a building strategy game. We have the actual game which I love playing when I'm able to so it's fun to play it in my head and work on my strategy for when I next play it with other people. Tetris is another game I play in my head. Something else I do with my imagination is to plan and build a house and design the architecture and then the different rooms and then put together the interior design.

I also enjoy mindfulness meditations which I do daily during my rest periods and again I like the variety of the different mindfulness meditations that are out there from visualisation meditations to breathing exercises.

The last thing I do in my mind is plan out future blog posts and videos for my YouTube channel.

Super easy scrap paper handmade card with video tutorial

Card example

This is such an easy card to make and can be adapted for different occasions as well as the different craft supplies you own plus putting your own twist on style of the card.

Difficulty rating: ★ ☆ ☆ - Total beginner

What you will need...

• Blank card and envelope (any size)
• Co-ordinating patterned scrap paper (or card) - perfect if you're coming to the end of a paper pad (your paper needs to be longer than the width of your blank card)
• Sentiment - this could be a stamp, sticker, die cut, hand lettered etc
• Either a paper trimmer or a ruler and pencil
• Scissors
• Glue - liquid craft glue or just a normal glue stick
• Border sticker or alternatively you could use ribbon, washi tape, a very small strip of plain or shiny or glitter card or something similar

How to make the card...

1. Cut your scrap paper into strips

Cut your scrap paper into 2.5cm (1 inch) strips. You'll need around 5 or 6 strips depending on the size of your card and the sentiment at the top.

If you're using a small blank card you may want to cut thinner strips or vice versa with a larger blank card you may want to cut slightly wider strips, say 3cm unless you want a wider variety of patterned paper strips.

2. Place your sentiment at the top of the card

You don't have to place your sentiment first but I find it helps me to work out the placement of my paper strips and also the border that I'm going to add between the top paper strip and the sentiment.

3. Work out what order you want to place your paper strips

Before gluing down your paper strips play around and work out what order you would like to place down your paper strips. 

The first strip of paper is placed along the bottom of the card and the rest of the strips will be placed at an angle.

Tip: Take a photo so you can recall what order your strips will be placed in

4. Glue down your paper strips

If you're using liquid glue, glue down along the bottom of your card and also up the sides of the blank card front. 

On the first strip of card place a line of glue along the top and lay it along the bottom of the card.

With the other paper strips glue a line along the top and bottom.

5. Add your finishing touches

Along the top of you last strip of card place a border to finish off. This could be a border sticker either one with a pattern or a plain or glitter border sticker. Alternatively you could use ribbon, thin washi tape or a very thin strip of metallic or glitter card as a few ideas.

If there is room you could also add an embellishment such as a name, a sticker or like I used a 3D butterfly card topper. 

Ways you can adapt this card...

Some cards I have made as shown in the video tutorial below, other times I have used a sticker or die cut sentiment or used alphabet stickers or stamps to personalise the card.

I've also used different sized paper strips depending on the size of the blank card I'm using.

Another thing I have done is to completely cover the blank card front in paper strips and then mounted on top a sentiment which I had stamped onto white card mounted onto coloured card that complimented the colour of the paper strips and then stuck it on the card using 3D adhesive foam. 

The many possible ways you can finish or adapt this card are endless!

Video tutorial