This month's crafty tutorial make is a macrame tutorial.
Difficulty level ★ ☆ ☆ ☆
What you'll need
➜ Cord/string
In the video I used Heptique 1mm hemp cord and 2mm waxed cotton cord but you could use any cord or string really; I've use parcel string in the past to make a hanging plant pot holder.
➜ Beads
I bought Craft Planet wooden beads; they cam in an assortment of colours, sizes and styles and I've found them to be good quality.
➜ Key rings
You could use ordinary split rings or you can get ones with a clasp and loop or D-ring
Living with being in a permanent state of pain can be really difficult to cope with, not just physically but emotionally too. It can also be very limiting at times but I have found ways of living with both chronic and acute pain and here are a few tips I would like to share with you on what help me cope with my pain...
1. Distraction
I find distraction one of the most helpful tips to cope with pain. Depending on my level of pain and how limiting it is on my body varies.
Sometimes distractions can include listening to something such as music, a podcast, mindfulness meditation or an audiobook. Or if I'm able to I'll read a book or magazine or my Happy Newspaper - whatever you find myself getting lost in. Other times I find just simple games on my phone are a good distraction. - I particularly like 1010!, 2048, Angry Birds Friends, card games, Sneezies, Sneezies Match and Two Dots. When I'm more able I enjoy colouring and word puzzle books or doing a jigsaw puzzle.
Try to find what works for you as everyone has their own things that they find helps to distract them so don't feel discouraged if you try something and it doesn't help. Keep trying until you have your own distraction toolkit which you ca extend and use in different situations alongside times when you are experiencing pain.
2. Rest
I find taking time out of the day to rest or having a restful day helps when I'm in pain, especially on bad pain days It's okay to have a PJ day in bed or on the sofa if that is what your body is telling you that is what you are in need of.
If I can I usually cancel plans and if possible I'll also cancel plans and medical appointments to allow me to have a rest day.
Rest is a form of self-care and part of self-care is listening to your body in what it's telling you what it needs and quite often for me that is taking time-out to rest to allow my body to recover..
My friend has this saying "just keep swimming, but if you can't swim just float". When I'm in pain I know that in that moment it's okay to just float and rest and do little as possible. It's about giving my body time to heal. Sometimes I find I need to have a nap so don't fight having a nap if you feel you need to have a sleep.
When I talk about 'rest' some people think that resting is doing something like watching TV, but this is still a stimulating activity. To properly rest you need to switch of your mid and your body. Personally I find laying any listening to relaxation soundscapes help my mind and body feel more rested.
3. Mindfulness
This one goes sort-of goes along with the theme of rest. I find mindfulness really helpful for my pain. Within mindfulness there is a selection of varieties. I personally prefer visualisation such as around a secret garden or going through the colours of the rainbow or breathing exercises but I personally find that things like progressive muscle relation aggravates my pain but it might work for you. There are a variety of mindfulness apps most have a selection of free versions but you can upgrade if you wish. YouTube also has a selection of mindfulness videos too.
4. Friends
I've found that friends who understand (a) are the really good friends in life and (b) they can help you through difficult times. Such as when you're going through a pain flare.
A good friend is someone you can sound off to about your health difficulties or to talk to about non-health related things to help you take you mind off your pain.
Friends really helps as when you live with chronic pain, (often accompanied by other health problems) as they let you know that you are not alone, This is especially the case if they too have chronic health problems but even really good friends who don't have health problems can still be as equally supportive.
5. Pinterest
I find getting lost on Pinterest searching for new crafts or hand lettering to try, envelope art, blog post ideas or building my own dream house really good for taking my mind off my pain and it's a fairly low-key activity. I find Pinterest a fairly easy things to do that doesn't require too much mental exertion but it's still stimulating enough to keep me occupied for a while. when I'm needing to take my mind off my pain.
6. Heat
My last tip that I find helps me cope with pain is heat. This could be an electric heat pad, a hot water bottle or wheat heatie. I find heat really soothing when I'm in pain and medically they do advise to apply heat to the area in which you are experiencing pain. You can get some really nice hot water bottle covers, or you could even make your own if you really wanted!
* Always use hat water bottles with caution *
If hot water bottles aren't suitable for you for whatever reason, (like for me I cannot make up a hot water bottle myself due to my seizures) there are plenty of alternatives to hot water bottles. I have some lovely cuddly microwave heat packs for example I have a dinosaur heatie and I have an electric heat pad too.
Let's say that things aren't so great at the moment and we're also in our third lockdown but aside from the negativity that's going on in my life and further afield there have been things that I have been loving lately...
Letters from Pen Pals & Friends
Receiving mail never fails to cheer me up and equally I love sending mail too. It's equally as lovely to her from the people I'm in regular touch with as well as people that I here from every so often. Once again my notice board as big as it is if filling up fast again with the things I received in the mail. Aside from the letters are the messages I get from friends over text, WhatsApp or Instagram and I now feel that the people who are in my life now are a really good
Jigsaw Puzzles
With a little help from my Dad and stepmum I've completed a 1,000 piece jigsaw puzzle. I love doing jigsaw puzzles but they can be a challenge to do but when I in the midst of doing a jigsaw puzzle always remember how much I love them so I've set myself the challenge to do another.
My Apple Watch has Arrived!
For Christmas I asked for some money towards an Apple Watch. I was needing a new watch as my medi watch died and I thought that a smart watch would be a good up upgrade as it would help me through it's reminders and alarms and timers and having access to my calendar etc. I've only had it a short while but so far I'm in love and I'm glad that changed my mind on what watch I was going for; instead I've gone for a silver case which I now see as being more universal in terms of matching outfits and I've going for a fabric stretchy 'solo loop' strap and it's really comfortable and I don't have a buckle in the way.
Organising my Blog and YouTube Channel for the Year Ahead
I've already started planning posts and what videos I might be doing and researching some new ideas and taking inspiration from Pinterest as well as other bloggers and YouTubers. I got a bullet journal kit for Christmas so I'm using that as my planning book.
Positive Appointments
For the professionals that I am in touch with at the moment I feel so grateful for their support. The appointments/contact I've been having recently whether they're consultant/nurse appointments I have every 6/12 months, more regular appointments or just contact from a clinician these appointments and contacts have been going well and I feel supported and like we're heading in a good direction despite the fact that the majority of my care is on hold because of the coronavirus situation.
Cuddles with Flop
Cuddles with my guinea pig Flop is always something that I love especially when he gets really talkative and nestles into my arm.
Wire Headbands and Braids
I came across wire headbands as a disability hack so I bought one to try them out and I am loving them. They are so easy to put on and they look super stylish and there are so many online to choose from that I may have to order myself some more.
I'm also loving braiding my hair at the moment and I've learnt a few new hair styles some from my friend Bex's YouTube channel. Braiding my hair help keep it out of the way and from getting knotty especially as I desperately need to go to the hairdressers and haven't had it cut for nearly 18 months! But also because it only gets washed once a week as I rely upon my Dad to wash my hair at the moment.
Last Friday I received a surprise in the post... A parcel from the charity Smile for M.E.
Smile for M.E began in 2012 with Alice (who has M.E herself) her friend Grace and the support of their families. Their aim is to bring a smile to people of all ages affected by M.E as well as carers and family.
In my parcel from Smile for M.E I received a lavender microwave heatie zebra, a pair of very cosy fluffy socks, a Moomin colouring book and some felt tip pens.
What was chosen for me couldn't have been any more perfect and I am so so so grateful for my parcel. I've been wearing my socks every day and my heatie zebra has been helping me with my pain as well as providing me with lots of cuddles and I hope when I'm able to to do come colouring.
For me living with M.E is very isolating; not just feely physically or socially isolated because I'm housebound but I often feel forgotten about. I am hidden away from the world and most professionals don't know how to help me or the care/support that I need isn't available (only made worse by the coronavirus situation).
Letters from pen pals and friends go a long way and projects like Smile for M.E help me feel remembered; like I do exist and I am thought about and that I am cared about and that I do matter in this world.
To find out more about Smile for M.E click their logo above. On their website you can also find the nomination for if you know someone with M.E who would befit from a Smile.
I truly had a lovely Christmas. With COVID this year it's been much more low-key which I've preferred and it made it more manageable for me.
Normally during the day I have regular rest periods but with how the day worked out I wasn't able to have them, but I did have one longer rest period in in the afternoon and by about 7pm I was shattered.
It was lovely to be with family especially as so many people spend this time of year alone. I do enjoy family time but equally I like my quiet alone time.
I feel so grateful for all the gifts I received from family and friends and my notice board is looking very festive with the cards that I received. I also received money towards buying an Apple Watch so I'm super excited to order that when I can!
I hope everyone reading this had a lovely Christmas too whatever you got up to and if you don't celebrate Christmas I still hope that you had a lovely day.
Going forwards into the New Year is difficult for more. For new me New Year isn't about 'new year, new start, new me' as Georgina put in our YouTube video collaboration. For me New Year makes me feel stuck; another year gone where I've been ill and another year ahead of still being ill and my life probably not going far forward. I do hover now feel better equipped in many ways. I have the knowledge that I learnt in hospital, I have some really good professionals in my care team, I have my faith and I have some amazing friends and people in my life. As hard as it can be sometimes it's trying to find the negative in the positives as I wrote about in my mini Positivity Series here on my blog. I also have plans for my blog and YouTube
So as hard as my life can be I do feel that despite all the challenges I face there is a lot of good and hope in it all in terms of moving forwards into next year..
The holiday's can be a challenging time for many people with all sorts of illness, disabilities or impairments. This post comes from my experience of living with physical chronic illnesses. I also write from having lived experience of having difficulties with my mental health and on top of that also having autism. So with a combination of all those things Christmas and New Year poses many challenges for many different reasons both physically and emotionally.
Here are some of the things I find help me cope with the Christmas and New Year period that I feel might help others too:
Ensuring you have enough medication & medical supplies
This is very important especially as over the holidays your GP my be on holiday or your GP Practise may close for the holidays along with other services so it's very important that you ensure that you have enough medication and medical supplies to see you through he holidays.
Making a schedule
From when I was in hospital I developed with the Occasional Therapist a 'Daily Plan' which is a schedule for my day with set times for rest, activity, meals, physio etc. I normally keep to this as much as possible with the odd adjustments which I'll do for the holidays. You may already have something like this, or you may already have a calendar, planner or diary or you may want to create a document on your computer specifically for the Christmas and New Year period.
On this I'd suggest putting on your schedule events that you are going on that you are going to such as Christmas dinner, games night, when you'll have or go and see friends and family, when you'll be opening presents etc. From there you can then plan rest periods, time to yourself, when you get washing and dressed etc - whatever is relevant to you and what you need to plan for to help manage your symptoms.
I've also made a timetable for Christmas card and gift wrapping and what needs positing to help me keep on track but also to pace myself with this activity and also to ensure that I've got everyone's gifts and that I also don't forget to wrap something.
Make yourself a safe space where you can retreat to for time-out
For me this is my bedroom and I find having a place to retreat to when I need to rest, or I'm in need of somewhere calm or familiar really helpful for my mental health. It's my 'safe zone'. (Unfortunately I'm unable to build myself a blanket fort as in the picture I chose.)
You might want to add things your safe space such s things that you find comforting or calming such as creating yourself a self-care box*.
Having a safe space of place set aside can really help you emotionally as it's a place to retreat to when things become overwhelming for example or you're just needing some self-care space and alone time away from hubbub of the house.
* Link it to a blog post I wrote with a list of 30 things to put into a self-care box
Knowing it's okay to sit out of events
Often you can feel like your missing out if you don't attend certain events. If you know what events are happening you can prioritise and plan which ones you can attend and with your schedule you can plan things like saving up your energy levels or ability to eat. or manage any other symptoms that you experience. Also know that for some events there is always next year.
Try not to feel guilty or rude for not attending particular events; it is an act of self-care and it allows to to pace yourself out to get through the holidays.
Noise cancelling ear plugs/headphones
If you're like me an you struggle with sensitivity to noise I would defiantly recommend purchasing some noise cancelling ear plugs/headphones. I find if I'm needing time-out, needing to rest it helps to shut out the noise around me (especially if there is a noisy event going on).
Tip: when purchasing noise cancelling earplug/headphones find ones with a high decibel dB cancellation or NRR - Noise Reduction Rating
Make a list of coping techniques
Coping techniques are different for each person and what may work for one person may not feel beneficial to someone else.
Some of the coping techniques I find help me are:
Mindfulness
Planning ahead
Making 'Now & Next' plans
Engaging in self-care
Setting boundaries
Taking time out
Using the 5 Senses technique
Breathing exercises
Spend time being creative
Being gentle, patient and generous with myself
Listening to music
Telling myself that whatever I'm experiencing/feeling will pass
FFORA are a brand that design bags, cupholders and tumblers that go with a magnetic attachment system that attaches to your wheelchair.
From FFORA I got the Essentials Bag Plus with the silver (Nickel) pebble which comes in black, the Essentials Bag in electric blue, the cupholder in white and silver and silver tumbler and the attachment system also in silver. (I like to coordinate myself)
I love being able to choose between my two bags to go with my outfit. They're a good size to keep my essentials bits and bobs in (see my video on what I was able to fit into my Essentials Bag - it was quite a lot!). I still do need my other bags which attach to my wheelchair unless I'm travelling light. I see my bags more as a giant purse.
What I like is that normally I keep my purse in the bag that is behind my knees (I don't keep it in my handbag that attaches to the back of me wheelchair for security). But I find bending down and then having to search for my purse quite difficult as I don't have much core strength. So when I went to the Post Office (I travelled light on this occasion). It was super super easy to just pull my Essentials Bag Plus up and un click it from the magnetic attachment system to get my letters out of the back section and to access my phone to pay for my postage and stamps and the then to easily click my bag back in place. It also felt really nice to choose the bag that went with that day's outfit and it felt nice to accessorise and include my wheelchair in with my outfit.
On the Essentials Bag Plus you have a loop at the top of the bag and inside in the main section you have space for your cards; some hidden pockets (which I've used to put in some medical information), then a purse section and two compartments then it's deep to put other essentials in. Then in the back section it opens out to put other bits and bobs in.
The Essentials Bag is very similar except it's a bit smaller and it doesn't have the loop and you just have one compartment behind the zipped purse and just one hidden section behind the card slots. Then on the bag it's smaller to just be able to slip your phone in and a face mask.
The Essentials Bag comes in different colours. I was a bit torn between the blue bag and the pink bag but I though the blue would go with denim which I wear a fair bit. The Essentials Bag Plus just come in black.
All the bags come with a magnetic pebble on them and to attach it to the attachment system it just very easily clips on and off. The bag also come with a cross-body strap which is great from people like myself who are ambulatory wheelchair users, or for when your in the car and then going to transfer into your wheelchair. I also though that it would be great for being ale to wear your bag when you're sat in your wheelchair if your using your attachment system is in use with your cup holder and tumbler to save you having two attachment systems.
The design feature I love most about these bags is that all the zips come with big zipper loops which is great for people like myself with limited hand function as the zip loops makes it a lot easier to be able to open ann close my bag if my hands are in spasm or if I'm wearing my splints etc.
The bags come in a fabric bag which I'm using to store them in to keep them nice when they're no in use and sat in my bag storage box.
Cup Holder & Tumbler
This cup holder is a solid ring (I thought I was squidgy silicone until I opened the box. Again it has a magnetic pebbled that clicks onto the attachment system. As it's ridged not everything fits in it. My FFORA tumbler obviously fits it and some of my other lidded mugs but unfortunately my water bottle is too slim to fit in.
The tumblers come in 3 colours (Nickel/silver, Champagne/Pale Gold and Midnight/Black - it now also very recently comes in white) and I went for the silver tumbler. The lid is ver spill proof and it comes with a straw. Again like with the big zip loops on the bags I'm not sure if the tumbler includes a straw because some disabled people like myself require straws to drink with or FFORA are just offering a plastic straw as an alternative to the paper straws now offered in cafés. The tumbler is very insulated; if I want to drink my coffee straight away I have to put in plenty of cold water. The size of the tumbler is also pretty big which I like.
Attachment System
The first thing I want to say about the attachment system is the brilliant design of the allen key that I needed to attach the attachment system to my wheelchair. The handle was a giant metal loop (you can see this better in the video) so design wise it's extremely accessible for people with limited hand function like myself and I was able to very easily use this on my own. Normally with things like screwdrivers etc I have to get someone else to do it for me.
The attachment stem has rubber guards to protect your wheelchair and you get two spares of these. The attachment system comes in 3 colours - Nickel/silver, Champagne/Pale Gold and Midnight/Black.
It's very simple and easy to attach and comes with instructions. Both the attachment system and cup holder where presented in a really nice box which was a nice touch. I ensured it was on tight but I didn't fully tighten it to allow me to be able to reposition my bag when it's clipped in so I can reposition the angle the bag is at on my wheelchair.
Downsides & Design Suggestions
To make the bag more accessible like FFORA has done with the hand loops it would be helpful to have bigger clips on the cross-body strap as they're a little too small and fiddly especially if you don't have brilliant hand function.
My design suggestion it would be nice to see the Plus bag also in a brown/tan colour and the for the Essentials bag to see it in a brown/tan colour, an aubergine sort of colour and maybe some toned down colours as currently they're all quite bright colours at present. It would be also nice to see the active bags in other colours too other than white and black.
I also think that it would be good to have wider availability of these bags to countries other than the USA and Canada as the products are so fantastic, helpful, fashionable as well as functional for wheelchair users it would be good to offer the bags to other wheelchair users in other countries too.
The white Active Bag had been out of stock in the UK for quite a while.
Positives
The bags are great for ambulatory wheelchair users due to the fact that they come with a detachable cross-body strap.
Though I did suggest some additional colour options there is still a good selection of bags to choose from.
The selection of Nickel/Champagne/Midnight for the attachment and magnetic pebbles though small is a good choice selection and I like how they've now added a white tumbler. (I probably would have chosen this if it was available at the time).
They are now adding a water bottle and bottle holder to their collection, I'm keen to order one but I'm waiting for them to get round to designing more accessible lids on the water bottles which they are in the process of doing.
I love how many features have been designed with accessibility in mind and for those with limited hand function and also including a straw with the tumbler.
Taking things like the bag and cup holder off the pebble is so so easy - no having to fiddle around to detach and attach.
I like how deep the bags are so you can fit quite a lot of your essentials in the bag (see the video and I've done a clip showing how much I was able to fit into my Essentials Bag).
It's really nice to be able to decide which bag of mine to choose from to go with my outfit. It's also really helped my confidence to feel able to include and accessorise my wheelchair by having my bag on their that goes with my outfit that is attached to my wheelchair.
The attachment system will fit most manual wheelchairs (over 180). Just go onto the FFORA websiteand scroll to the bottom where you can search for the brand and model of your wheelchair. If you don't see your wheelchair you can contact FFORA below the search.
The postage costs are also really good.
Video Review on my YouTube Channel
* This is a sponsored promotion by FFORA who gifted me some of their products
A couple of months ago I contacted Action for M.E asking if I could write something for their InterAction magazine, which gets sent out to members. I had a few ideas that I proposed to them and a few of them they liked and asked if I could merge them together and also if I was able to write a two page article. They also asked for some photographs to go with the the article.
The article touched upon living with severe M.E and how I've ben able to find ways to do the things I love - blogging and letter writing. I also write about friendships and the importance of staying connected with people and how for me I love letter writing and like with blogging how I've found ways to keep in touch with friends via letters. I also touch in the article on friendships.
I'm not going to do a video every day as that would just be impossible for me to do due to my health. Instead I'm going to aim to do a couple of videos a week (also incorporating my usual YouTube posts as Vlogmas posts like I did with my decopatch 'Monthly Make'). So ideas of 'Vlogmas Day One' I'm naming my videos 'Vlogmas Video One' instead.
Some of the this I hope to do are some chatty videos (and hopefully a collaboration if I can), managing the holidays when you have a chronic illness/disability/mental illness, Christmas crafts, Christmas BSL signs and more.
To keep up-to-date with my Vlogmas videos I'd encourage you to subscribe to my channels. If you have any ideas for videos just comment below or on my Vlogmas videos or alternatively as a DM on YouTube.
To view the videos with subtitles or on a bigger screen or to subscribe to my YouTube channel click on the video and it will take you to viewing the video on YouTube.
Click the photo to go to my Vlogmas playlist on my YouTube channel
Decoupage is a great little hobby. There are so many things you can decorate - I've done a draw set, trinket boxes, wooden spoons, boxes, photo frames, hanging decorations and more. There is also such a wide variety of different papers out there for whatever project you're doing.
My go-to place for decoupage supplies is The Arty Crafty Place they have a wide selection of papers, craft blanks and kits and the prices are very good and as a bonus you're supporting a small business.
Below is a video tutorial on how to decoupage for December's Monthly Make.
Having friends and good people in your life help me so much. Because of my health I'm pretty isolated at home but talking to a friend via text or WhatApp or getting a letter in the post really gives me a positivity boost. Having friends and good people in my life reminds me that I'm not alone.
Also having people in my life that can also relate to having health struggles whether that be with physical health problems or mental health difficulties really helps as I know that we can relate to each other on how difficult it is to have those extra challenges in our life and together we can share the highs and the lows. Also when I'm talking to a friend who also has health problems I know that they 'get it' and can relate and understand. As well as talking about illness we talk about life and 'normal' stuff too like crafting, our pets, projects we're working on, online courses we're doing etc.
Even if I'm talking to a friend about something negative it's like that saying 'a problem shared is a problem halved'. Knowing that I can share my problems with some of my friends is such a positive thing to know that they're there for me and equally that I am there for them and together we can share the highs and the lows. And also when I'm talking to a friend who also has health problems I know that they 'get it' and can relate and understand.
Also the vast majority of the people and friends that are in my life now have come out of me being ill. Yes I have had people who have walked out on me but the people and friends that I have in my life now I know are the people that are quinine and do care about me and that we are there for each other. These people I've met through pen pal groups, social media and through my blog/YouTube and in hospital and all of those things I wouldn't have started doing if it wasn't for me becoming ill.
The people I have in my life now I know are my genuinely true friends and it's more about quality than quantity and I now feel that I'm in a healthy place with regards to the people and friends that I have in my life.
