Tuesday 25 October 2022


So to start off with rest is a major component of my day. Within my daily plan I alternate between rest and some sort of activity period or the odd time for a meal/snack, or 5 minutes of physio or my AM routine etc.

I was prompted to write this post because today I didn't rest enough and that has Big consequences. Not getting enough rest means that my symptoms get markedly worse. Also on the M.E side of things you needs energy to sleep and though a huge part of having M.E involves chronic fatigue you might be surprised to know that another aspect of the condition is sleep difficulties. This is because your body needs energy to sleep and when you don't have enough energy your body can struggle to sleep. Normally I settle down to bed at 9pm but it's now 11.56pm and today I don't rest enough so I can't sleep which will mean that I'll struggle tomorrow so all can try and do tomorrow is take it easy, do more low-level activities and of course get plenty of rest.

Rest is different for different people. For me it's structural. How we rest is is also different which is something that I came across when I did my day in my life Instagram story. When I first started to have rest periods I'd say listen to a podcast but I soon realised that for me that was still too stimulating for me. Equally I can't engage in pure neurological rest and just lay there for 30 minutes or an hour. For me what I find works for me is listening to meditations especially visualisation, breathing exercises or mindfulness. Sometimes I can do body scanning meditations but it depends as some when I'm doing them magnify my pain and other physical symptoms and I find them too uncomfortable. As well as meditations I also enjoy listening to soundscapes but not the repetitive kind - I like ones in which I can tell myself a narrative.

From when I did my Instagram story I know some people commented that resting in this way would make them nod off (there's a difference between napping and resting) and they preferred what I would class as more active rest or low-level activity. Activities such as colouring, reading, listening to a podcast the radio or an audiobook, flicking through a magazine, completing puzzles in a puzzle book, diamond painting, doing a jigsaw puzzle as a few examples.

However you rest if you're unwell wether it be temporarily or more chronic I suggest building time into your day to rest, preferably a time when you start to tire and your body is saying to you 'STOP I need time out!' - this may be before the time your body is screaming for a nap because it's so overtired. For some people this may just be once a day and for others having a rest may be several times a day, there's no such thing as too much rest. 

Tuesday 18 October 2022

The two faces of M.E

So you may have noticed that I've been more absent on my blog since April when I had my surgery. I knew my surgery would crash my M.E but I didn't think it would be this back and last for so long. I'm still waiting to return to my pre-surgery self; the alternative is to accept that this is my 'new normal' and adapt.

Thankfully what I learnt from my hospital admission in Leeds a few years ago in a specialist unit for people with severe M.E I learnt new ways to live alongside severe M.E. This has helped me to adapt over the past few months such as I've added in an additional rest period early afternoon to help me keep going and I do more low-level activity periods (meaning I'm getting through a lot of audiobooks!) and I try though not always successfully to manage my activity levels. However this is hard as I have my PA's and for me getting a bath is a high energy activity* and it completely exhausts me but having a bath isn't something I can skip unlike other activities.

*Showers are not something that is possible for me as with my severe hypersensitivity having a shower is like being jet washed and causes so much pain and I get cold causing my muscles to spasm.

With my M.E I get my good and bad days just like most people with a chronic illness do but I do find that generally everyday flits between ups and downs. First thing in the morning I'm no so great then by the time my PA comes at 10am I've rested enough to get through our routine and then I'll dip a little before sliding back up and then I start to dwindle and then I'll just completely crash at bedtime.

On my good days I am able to enjoy things. I have a new PA who can't drive so on a Sunday with my social support hours I've started to enjoy being able to do things like go out in my wheelchair to post my letters or do some baking. I also love my PA Diane curling my hair for me. With my family I enjoy playing a game called Carcassonne. Other things I can do is colouring or other crafts like card making - I'm currently making Christmas cards to fundraise for Action for M.E there's also my letter writing. However even on my good days my activity allowance is limited and I have to be really careful not to overdo it and I have to balance my activity time with other things like appointments.

Then on the flip-side are my not so good M.E days. The days when my body is feeling pretty much every symptom of M.E and often my immune system flares up too (for me my M.E is more of a neuro-immune disorder). These days I'm more thankful for my profiling bed to help me sit up when I can't and for the care from my PA's and family; I'm grateful for my pain relief medication and heated blanket and for audiobooks to occupy me and to pass the time. On those days I just hope that tomorrow will be better.

Thursday 13 October 2022

Fundraising for Action for M.E this Christmas

This year I'm raising money for Action for M.E by selling handmade Christmas cards. I wanted to support an M.E charity having M.E myself and I chose Action for M.E to help them continue to run some of their projects such as the Christmas Angels project and their listening service 'Listen to M.E' as well as the charity's advocacy and campaign work that they do to give people with M.E a voice through raising awareness of M.E and trying to get better access to and more funding for services, treatment and research. You can find out more fully the work of Action for M.E and information about M.E on their website.

So far I've managed to raise £10 and I have one current order in the making so more funds will be on their way. I've made a little chart in my bullet journal to document the amount I raising. I know it won't be much but I know that every pound will help.

This is actually quite a challenging fundraising task for me. I love being creative but having severe M.E card making can be quite exhausting (just like everything else is!) I can only spend about 10-20 minutes of activity a day so generally I can only get one card made a day without overdoing it.

I've had some lovely comments from people with comments such as saying how I'm using my creativity in a wonderful way to support a charity.

I just wanted a little project to work on and I love card making and I thought making cards and selling them to fundraise would be a nice idea. I wasn't sure when to start selling cards but when I asked people on social media some people suggested starting early before people started to buy cards in shops. In all honesty I'm glad I've started early as it's giving me the time to make cards and also get the word out there too.

If you would like to purchase any handmade cards please message me via my Instagram profile here.

Monday 3 October 2022

Action For M.E - Christmas Angels

The charity Action for M.E's Christmas Angel's project is now in it's 12 year! The project's aim is to send out Christmas cards to people with M.E/CFS through the Action for M.E office.

I first heard of the project when I was going through an inpatient stay on a specailist unit for people with severe M.E. Christmas has always been a hard time for me since becoming unwell as so much of the Christmas festivities I'm no longer able to cope with or participate in. This makes me feel even more isolated and heightens my depression at this time of year.

However receiving a few cards through the Christmas Angels project feels really special. The cards remind me that I'm not alone and that I'm being thought of at what is a difficult time of year. This is especially because a totally random stranger; often one who has M.E too has taken then time to participate in the project and write in a card and send it to Action for M.E to distribute out.

If you would like to volunteer and participate in the project, and/or if you have M.E yourself and would like to receive a Christmas Angel or you know of someone with M.E and would like to nominate them to receive a Christmas Angel fill in this form. If you have any queries you can contact Action for M.E on 0117 927 9551.

Once you have completed the form Action for M.E will be in touch to let you know what to do next.

All it takes to participate is price of a card and a stamp.

The deadline to participate is Monday 17th October.