Surgery, my birthday & a life update

Apologies for sharing this post not on my usual Tuesday posting day. It's taken me longer to write this than planned.

I generally share topical posts but every-so-often I do share life updates and I haven't done one for a while and there's been a few bits going on in my life so I thought now would be a good time to share a life update post. There's a lot to update on but I'll try and keep this post as short as possible whilst still trying to fill you in.

So for a while now I've been waiting for orthopaedic surgery on my toes but due to my EDS (Ehlers-Danlos Syndrome) local anaesthetic has little effect on people with the condition so I'm going to have my toe surgery under general anaesthetic. I could have had it done about a month ago but I was taking antibiotics at the time as I keep having reoccurring infections on one of my toes and I had to be 3 week clear of antibiotics to have my surgery. So anyway I got a call from the orthopaedic admin lady and she explained that she'd been thinking of me over the weekend (which was lovely to hear) and rather than waiting for a slot she decided to book me in so I could have my surgery as soon as possible. Unfortunately the date she booked me in for was the 16th June - the day before my birthday 😕 

It's Tuesday (15th June) now - I'm writing this post in littles bits giving little updates (I normally compare blog posts in little bits here and there anyway). I'm just waiting for my PA. The plan today with my PA is to pack an overnight bag to take into hospital 'just in case' as if I was to be admitted due to COVID no one would be able to bring anything to the hospital for me.

So I've had my surgery, unfortunately I had to stay in over night which was my birthday so it was a bit rubbish having to spend my birthday in hospital. The surgery went okay though there where some complications plus I was a 'complex case'. The anesthetist was lovely and spent a lot of time with me and use the smaller paediatric equipment to avoid dislocating my jaw and he really really listened to me about my illnesses and how they they affect me and also how they will affect my surgery such as managing my pain post-op and and reducing my dislocations etc.I was quite poorly in theatre recovery but I was well looked after. I now have the district nurses coming to do my dressings which helps me out a lot.

I got home from the hospital around 7pm and I still felt nauseous from my surgery so I didn't feel up to eating my special birthday tea (bangers - aka sausages, mash and beans) but I did feel up to eating a little ice-cream as my throat from being intubated in theatre. Mandy had found some salted caramel vegan ice-cream (which was very yummy by the way and you can find it in the co-op). Whilst we was eating the ice-cream I opened my gifts from my Dad, Mandy and my brother. 

Then the next day, Friday (18th June), I had a restful morning and I opened the gifts from friends that day and I was filled with so much gratitude and love at how carefully chosen all my gifts where.

One life positive is that I now have a PA; she started at the end of April so we're in a nice routine now and the help is fantastic and we get on so well. We can have a laugh but she's very professional and supportive and is great with dealing with everything.

I'm also awaiting for an assessment with adult social care and I'm really really hoping that I can be given some sort of a care package. I did get given a care package back in 2019 just before I went to Leeds but when I got discharged and reassessed last year it was taken away and I never even started using the care package. I've tried several times in the past to get a care packaged but I never even got an assessment so fingers crossed and I know that my current PA will support me as much as she can which she's said she will do as she can see how much I'm struggling what with her being the professional who sees me the most.

So all-in-all health wise I'm struggling. My health is worse especially my M.E which my neurologist thinks that lack of care both due to COVID and also not having a carer where two bit factors but I have his support and now my PA too.

My extended birthday has been enjoyable and Mandy made me pancakes for breakfast (today is the 23rd June) so I said that it was a belated birthday breakfast and made up for my birthday tea.

I find special occasions like birthday's hard as it feels like another year passed in which I've been ill and all that comes with it and another year ahead of the same challenges but I'm trying to focus on the positives as much as I can though I do sometimes especially at the end of the day feel down and 'sick and tired of being sick and tired' but my friend Ruth has a lovely quote "just keep swimming and when you can't swim just float" and I know that it's okay to float for as long as I need to and that I have some amazing people in my life now that I've come to know who also having health challenges that I can turn to.

I've been making thank you cards for everyone who's sent me cards and gifts so that's kept me occupied as does my letter writing. I'll leave this post here as I think I've given a sufficient up date.

Let's talk about Loneliness

   - Marmalade Trust -   

This week is Loneliness Awareness Week; it's a topic, especially as a disability blogger, that I feel needs talking about. 

As the image from the Marmalade Trust says, everyone will feel lonely at some point but not everyone experiences loneliness.

It's a bit like depression. Everyone has felt a bit low at some point in their life but not everyone experiences or goes of to develop clinical depression.

This year I wanted to write and share with you my own loneliness. Being house and sometimes bed bound I have faced a lot of isolation and loneliness since I became ill. 

I only leave the house usually when it is necessary such as for medical appointments, so little chance to socialise. Very occasionally I do go out for fun things such as a drive-thru coffee trip as I did recently with my Dad on the last Bank Holiday Monday. 

Leaving the house has to planned, I rest for days before just to cope and then usually I have limit my time out and then once I'm home my body just crashes from the burnout of going out.

I only have one local friend but I haven't seen her in person for at least a year and half due to my health worsening. A friend coming round to the house is still exhausting for me, talking and listening tires me out and I just wish that my body and mind would allow me more time with my friend and I wish even more-so that I could travel to meet some of my other friends who I have gotten to know over the years.

My main comfort from loneliness is in the form of letters from friends and being part of the Chronic Warrior Collective.

Hearing from friends through a letters gives me that connection to the outside world. I love hearing what my friends having been doing and about their lives. For me letters fill that loneliness gap in my life; they remind me that I am not alone and that I am loved and cared about. Equally replying to letters also eases my feeling of loneliness and I know that for some of my friends who I write to that my letters will equally ease their own loneliness and isolation due to being house/bed bound themselves due to their own challenges with their heath.

Equally if you know of a friend who is experiencing loneliness and isolation for whatever reason - it could be due to illness, bereavement, a relation breakup, those shielding during lockdown, people who live alone, moving home or to University as a few examples. Reach out to those friends; let them know that you are thinking of them and that you are there for them. You could write to them or even just a text goes a long way to let someone know that they are thought of.

Here is some advice from Lets Talk Loneliness on what you can do to ease your feeling and experience of loneliness:

(This is just a brief summary but if you click the link above ⤴︎ it goes into more detail)

⭐️ Keep in touch with the friends and family around you 

⭐️ Join online groups, these could be forums, social media groups, virtual get togethers on video link (some charities and have moved their face-to-face support groups to become virtual groups which is great especially if your nearest support group is still a long way to travel to. For me I've found this great due to me being housebound.) - Some religious groups have also moved their get togethers for worship via video link.

⭐️ Help other who are experiencing loneliness

⭐️ Contact helplines that support those experiencing loneliness 

Link to organisations & charities:

⭐️ Marmalade Trust - The organisation that leads Loneliness Awareness Week
⭐️ Lets Talk Loneliness 
⭐️ WellbeingInfo.Org
⭐️ I Will - Loneliness in young people
⭐️ Scope - Disability charity // Loneliness search

Some online groups and forums that may interest you:

⭐️ Chronic Warrior Collective - social club

⭐️ Scope online disability forum

⭐️ Sane, mental health online form

⭐️ Beat, Eating Disorders - message board

⭐️ Gingerbread online forum, for single parents

⭐️ The Mix, online support for young people under 25

My Quaker faith & my first Meeting for Worship

So my faith has been something that I haven't touched upon yet on my blog but my faith plays a key part in my life. 

Several years ago I felt that there was something missing in my life. I know about holistic wellbeing and I was attending to my physical, emotional, intellectual, cultural etc needs but I realised that my spiritual wellbeing aspect of my life was missing. When I realised that I set about searching for my faith and I delved into looking at some of the different religions that where out there to see what each one was sort-of about.

As a child I was brought up as a Christian; as a family each Sunday we went to church and I had a Christian upbringing such as saying grace before eating, saying a goodnight prayer, not swearing or blaspheming etc. But when I became a teenager I turned away from religion.

When I began to search for spirituality in my life again my Dad, a Christian himself, steered me towards Christianity but there are so many denominations I struggled to know which was the right one for me. Again my Dad guided me and I ended up going to a non-denominational church which was quite upbeat and modern compared to the more traditional Methodist church my Dad and step-mum go to that I'd gone along to but I didn't feel that church was for me.

I had connected with someone the "younger" adults at church through our weekly get togethers to chat, worship, sing and study the bible etc as well as sitting with them at church on a Sunday. However, as time went on many of that group got married and started families and those more my age helped with the kids church so I began to feel very lonely at church despite being in a room full of people. My attendance was also sporadic because of my health and there were incidences of my having seizures which weren't ideal. I don't like fuss and having a seizure in the middle of church creates fuss. There where also things I felt uncomfortable with and I also didn't feel that there was any room for my own spirituality and beliefs - I felt like I was being told what I should and shouldn't believe and sometimes this clashed with my own thoughts on certain topics. Then as my health worsened I reached the point where I became housebound but by that point I'd already pretty much stopped going to church but I still felt something spiritual in me.

After a period of time I came across Quakerism through a YouTuber who's video's I like watching and I learnt a little about Quakerism from her videos - Jessica Kellgren-Fozard: Quakerism 101. 

I began to become interested and wanted to know more. I enquired more about Quakerism and I contacted Quakers in Britain who sent me a bunch of literature to read and which was really helpful along with watching Jessica's videos and also listening 'A Quaker Take' podcast (by Quakers in Britain) to understand Quakerism a little more and it did seem like it was what I was spiritually looking for.

Not long after I was then in hospital for 6 months and I made good use of the hospital's chaplaincy team who were so good and we talked but also spent time sitting quietly together as Quakers do when they meet for worship.

Once I was home I got in touch with my local Quaker group and as due to the coronavirus situation they weren't meeting for worship; instead on a Sunday we was just meeting on Zoom for a social chat which really helped ease me into Quakerism especially as on reflection if I went straight into Meeting for Worship it might have been too full-on. In the social groups I was able to ask questions which we discussed such as Quakerism and Christmas and at Easter.

With Quakerism it's not about definitive answers but more about seeking (if that makes sense?!) everyone's views and take on matters are different and we respect one another and don't judge. The core principles or values of Quakerism are: Equality & Justice, Peace, Truth & Integrity and Simplicity and Sustainability  - you can find more out here.

After a while some friends (how Quakers refer to one another) from Grimsby where joining another Quaker meeting's for worship on zoom but I didn't feel ready yet to meet for worship.

Then this week I messaged someone I knew to ask if his Meeting House was still facilitating worship on Zoom so he put me in touch with the lady who co-ordinates the virtual Meeting for Worship. So I emailed her earlier in the week and I explained a little about my journey towards Quakerism and how I now felt ready to meet for worship on zoom.

So that's brought me to today (Sunday 30th May). I finally joined my first Meeting for Worship via zoom. There were other who where there on zoom and one laptop in the meeting house where others had come to worship in person. I found it easier to have my camera off and we all had our microphones off too so background noise didn't disturb anyone. I also thing Meeting for Worship on zoom was another step to help ease me in.

I'm still very new to Quakerism so I'm not an expert in the ins and outs of things but when Quakers meet for worship we sit silently together - when Quakers worship in person they sit in a circle or a square rather than traditional pews like you'd find in a church. Usually when there's not a pandemic a Meeting ends when two people shake hands. In today's Meeting for Worship some people did speak - this is called giving ministry. (I'm still learning these things).

I was worried if I could manage the whole hour of worship but I surprised myself and I got a lot out of it both personally but also sharing worship with others which all-in-all obviously helped me spiritually.

It was a big step for me to feel brave enough to join a meeting as it's something I'd put off doing for a while as it felt quite daunting but it's wasn't half as challenging as I imagined and I now look forward to more meetings. My hope is that when I feel well enough and also safe enough given the coronavirus situation that I can Meet for Worship at my local meeting house.

Spiritually I feel like Quakerism is the right faith for me and I'm happy to say that I'm a Quaker. I now enjoy declaring on forms like on my medical records and the census that I'm a Quaker. More often than not I get asked what is Quakerism, like when I went for my pre-admission assessment for an operation that I'm having in a few weeks. My Dad always jokes about Quaker Oats but I can firmly say that my faith has nothing to do with oats, and no we don't dress like the man on the Quaker Oats logo!

June's Monthly Make - Cat Coaster

A granny square is a crochet essential and once you get the hang of how to make one you can make all sorts from blankets to bags to clothes.

Difficulty level: ★ ★ ☆ ☆ - Easy

In this tutorial I'll use treble crochet (UK terms - double crochet in US terms).

You will need:

• Yarn
• Crochet hook in the size specified by your yarn
• Scissors
• Yarn needle

Abbreviations & Stitches you'll need to know

(Don't worry in the video I will show you how to do the different stitches and how to do a magic circle)

CH - Chain

SL ST - Slip stitch

HTR - Half treble crochet

DC - Double crochet

TR - Treble crochet

(All UK terms)

Instructions

Round One

Make a magic circle and in your magic circle do 6 htr. Close your magic circle and sl st into the fist htr

Round Two

Ch 1, 2 htr in each of the 6 st, sl st into the first ch

Round 3

Ch 1, 2 htr into first st space, 1 htr in next stitch space, sl st into the first ch

Round 4

Ch 1, 2 htr into first st space, 1 htr in next 2 stitch spaces, sl st into the first ch

Round 5

Ch 1, 2 htr into first st space, 1 htr in next 3 stitch spaces, sl st into the first ch

Round 6

Ch 1, 2 htr into first st space, 1 htr in next 4 stitch spaces, sl st into the first ch

(Do not tie off just yet!)

Ears

In the first stitch space 1 dc and 1 htr

In the next stitch space 3 double tr

In the next stitch space 1 htr and 1 dc

Sl st in the next 8 stitch spaces

In the first stitch space 1 dc and 1 htr

In the next stitch space 3 tr

In the next stitch space 1 htr and 1 dc

Sl st and tie off

To finish weave in your ends with a yarn needle

Video Tutorial