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 channel.
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:
Making 'Now & Next' plans
Engaging in self-care
Taking time out
Using the 5 Senses technique
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.
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.
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 website and 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.
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.