Spoonie Essentials

I Am a Spoonie

I’ve been thinking for a while about collating a list of “Spoonie Essentials” or things that make life as a spoonie a little bit easier. Different things work for different people and there isn’t a one size fits all when it comes to chronic illnesses, but these are the things have have helped me, given me comfort or made my life a little bit easier.

Books

  1. Hyperbole and a Half – Allie Brosh
  2. The Truth Pixie – Matt Haig
  3. Living With the Enemy – Ray Owen
  4. The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
  5. Miranda’s Daily Dose of Such Fun – Miranda Hart

TV/Film

  1. Five Feet Apart
  2. Brain on Fire
  3. Atypical
  4. Groundhog Day
  5. We Are Visible

Podcasts

  1. Sickboy
  2. This Is Not What I Ordered
  3. Chronic But Ironic
  4. Feminists Don’t Wear Pink (Scarlett Curtis)
  5. Shagged, Married, Annoyed (Rosie and Chris Ramsay)

YouTube

  1. Amy’s Life/Amy Lee Fisher
  2. Life With Stripes
  3. Georgina’s Journey
  4. Chronically Jenni
  5. Jessica Kellgren-Fozard

Health Care Esstentials

  1. Dry shampoo (Batiste or Colab Dry Shampoo)
  2. Body Shop Almond Milk Body Yogurt
  3. Au Lait | Scottish Fine Soaps – Body Butter
  4. Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
  5. Amie Petal Perfect – Cleansing Micellar Water

Snug as a Bug

  1. Weighted blanket
  2. Hot water bottle
  3. Heated blanket
  4. Wheat Pack
  5. good pillow (I have a V pillow and a memory foam pillow)

Odds and Sods

  1. Large medication box
  2. A support system (friends, family, health care professionals, people who just get it)
  3. Technology to keep connected to the outside world
  4. A bag – fashionable but sensible. Mine is similar to this
  5. Mobility aids (crutches, wheelchair, cane, walkers etc)
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June Favourites – Lockdown Edition

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Books

Instead of talking about books that I have read over the past month, I want to highlight books by Black and Asian authors, in the wake of the BLM protests and George Floyd.

  • Queenie – Candice Carty-Williams
  • Such a Fun Age – Kiley Reid
  • Why I Am No Longer Talking to White People About Race – Reni Eddo-Lodge
  • It’s Not About the Burqa – Mariam Khan
  • Does My Head Look Big in This? –  Randa Abdel-Fattah
  • I Am Thunder – Muhammad Khan
  • The Hate U Give – Angie Thomas
  • Clap When You Land – Elizabeth Acevedo
  • The Color Purple – Alice Walker
  • Noughts and Crosses – Malorie Blackman
  • The Girl Who Smiled Beads – Clementine Wamariya

 

Film/TV

I’ve been continuing to take advantage of lockdown by watching more things on Netflix. I loved Dead to Me, a comedy focusing on a widow who is searching for the person responsible for killing her husband in a hit and run. Unbeknown to her, the driver befriends her at a bereavement support group. In a weird way, it explores the funny sides of grief, loss and forgiveness and I can’t wait for series three.

Based on the book by Celeste Ng Little Fires Everywhere, is a recent adaptation for Amazon prime. I was slightly underwhelmed by the book, but I loved the series.

Glow Up has become a little bit of a guilty pleasure over recent weeks. It reminds me of when I was at university and my Tuesday evenings were made with another BBC Three creation, Hair, which followed hairstylists bringing to life crazy and unique hair designs, to be crowned the best hair dresser. Glow Up follows a similar theme but with makeup artists undertaking various tasks and elimination rounds. I didn’t want to like this, but I’ll hold my hands up, I love it!

 

Spoonie Favourites

I recently discovered B12 super energy patches. I decided to try these as my B12 levels aren’t great and I struggle with absorbing tablets due to my gastroparesis (and I take so many on the daily). It’s hard to tell whether or not they have made a difference, or if it’s just been a placebo effect, but I seem to have more energy and less fatigue so it’s a winner for me.

Odds and Sods

Okay so it’s not really a secret that I love the Body Shop, so whenever they realise a new range, I’m normally pretty happy with it. Their latest range of cooling cucumber and zesty lemon has not disappointed. The cucumber body yogurt is brilliant if you are a little bit sunburnt and the lemon is a lovely scent without being over powering.

I recently decided to have a moment of extravagance and purchased the most expensive skin care item that I have ever bought. Said item is Charlotte Tilbury’s Magic Eye Rescue. At £42 for a 15ml pot, it is a lot of money and whilst I really love it, I don’t know if I would buy it again because I cannot justify the price. My eyes seem slightly less puffy and the skin feels smoother but my black bags haven’t magically disappeared which was what I was hoping for!

My final favourite for this month is a bit of a weird one. As many of you will know, May is Ehlers-Danlos Syndrome awareness month and out of coincidence, Matalan have been selling a cute little zebra cushion. Zebras are the EDS mascot so it was meant to be! At the time of writing, it is out of stock, but they do have other zebra-ish stuff, so it’s worth a look.

 

 

 

How I Survived Lockdown

c5912582950c0186a1fc30b74387836cI found out yesterday that I will be returning to work on Monday (15th June), after 13 weeks of isolationa/shielding. I started shielding a week before I was medically told that I needed to and I was incredibly lucky that my employers were understanding – I think being honest about my health from the start helped. But they didn’t complain or make me feel bad, in fact they went out of their way to reassure me that things would be okay and that it wasn’t causing huge issues. Despite that, I felt incredibly guilty for leaving them in the lurch. I was also bloody angry that yet again, my health was dictating what I could and could not do.

Rewind to this time two years ago, I wasn’t working, due to my worsening health. I was very isolated and rarely left the house, unless it was for medical appointments. I can’t deny that part of my anger stemmed from the fact that I had spend over two years effectively in isolation due to being so poorly that I couldn’t properly partake in society, and now I was facing months of yet again being stuck at home, unable to work, unable to see friends and family and losing my independence that I had worked so hard to regain. 

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That said, I have coped remarkably well with isolation. I think that living with chronic and mental illnesses kind of prepare you for not being part of society for long periods of time. When you have a chronic illnesses, the chances are that you spend weeks/months/years at home, often unable to leave your bed. The world carries on, outside your windows, but you aren’t part of it. Whilst I had moments of feeling a bit penned in, lockdown didn’t really bother me that much because it was a lifestyle that I was used to. Having mental illnesses also prepared me, in part, for the madness that is covid-19. I have anxiety and can easily catastrophise about the world ending and going through endless what ifs. On so many occasions, I have convinced myself that the absolute worst was going to happen, so when the world imploded and shut down, it wasn’t actually as bad as I had built it up to be in my mind. Every day I panic about the people I love dying, and suddenly that became a very real threat. But that threat felt normal for me, so whilst other people were panicking about loved ones getting ill and dying, I basically sat back and thought “this is my normal, this is okay.” Having an excuse to be anxious and not being viewed like I was being dramatic or overreacting was quite a nice break. I felt like saying “welcome to my daily life. Exhausting right?” I wasn’t having to constantly explain my irrational thoughts, because suddenly they weren’t irrational. 

That said, I did make a conscious effort to try and look after myself during lockdown. Mentally, things were a bit wobbly towards the beginning (nothing to do with covid) and I quickly realised that it was unlikely that I would get any additional support because, put simply, it wasn’t there any more, as everything had shut down. It was a bit of a sink or swim moment, and I had spent so much time sinking, that I figured that trying to swim was worth a try. 

So how did I survive lockdown without relapsing and becoming very unwell?

Sticking to a routining has been really important. I’m not going to pretend that I was up and dressed by 8am every single morning, like I would if I was at work. That would be a lie. But I have tried to wake up by 10ish (unless I felt ill) and then get up. I could happily live in pyjamas but I made sure that I could dressed every day because I will admit, I mentally feel better if I have made the effort to look presentable. I tend to put aside some time every day to exercise in some form, do some of the endless medical and adult admin that seems to have accumulated over the past few months and I have done a lot of reading. I kept meaning to write down all the books that I have read during lockdown because it’s a pretty impressive selection. Even though I haven’t been able to go out-out, I have spent time in the garden and actually developed a bit of a tan. I know, mad. 

On the days when the weather hasn’t been so good, or when my body has been rebelling, Netflix has been fantastic, as has Amazon Prime. I have had the time to discover so many new series over the past few months, including Dead to Me, The Good Fight, Alex Rider, Chernobyl and Little Fires Everywhere. 

Weirdly, during lockdown, I have felt more connected than I have done in ages. I am so grateful to my friends who have been at the end of a video call a couple of times every week. Even though no one has been doing anything particularly exciting, just spending time in their company has been really nice and it’s left me feeling a lot closer to them. I also have send more letters and happy post to friends, because receiving something other than a bill or medical letter makes a change from the norm.

Being kind to myself has been really important. We are living in unprecedented times so doing little things to try and keep myself happy, sane and healthy has been a priority. This ranges from using a hair mask once a week to try and save my hair when I can’t see my hairdresser, to making a conscious effort to try and eat well. I’ve tried to exercise most days and have also been doing sudoko and other brain training games. I don’t for one moment that it will improve my brain skills or intelligence, but I want to keep mentally active, as well as physically active.

As life slowly begins to return back to normal, spare a thought for those people whose life won’t be drastically changing and will instead be remaining at home and isolated from their friends, family and society. Millions and millions or people are silently missing, please don’t forget them.