I have had this horrible condition (ME/CFS) for 2-3 years but looking back symptoms started way before.
At the beginning I started taking more and more days off work, before it getting so bad , I had to get signed off for around four months.
During this time I was predominately bed/house bound, unable to work, socialise and at the worst of it unable to get to the bathroom without the help of my parter. Continue reading
In my previous post I gave an overview of my first session participating in the mindfulness course offered by the NHS Bristol CFS/ME clinic (link), this post will focus on one particular practice we did in this first session, one that I have aptly named: The Raisin!
This is quite a common practice, it is classified as an informal as you can do it with any food or drink as part of your day, my understanding is that an informal practice is one that you don’t have to set aside to do an activity specially, it is more about doing things that you do everyday mindfully.
We were each given a couple of raisins, we were told to really look, smell, listen, feel and taste them, simple right? Continue reading
I’m back!
I have been a bit absent as of late, life has gotten the better of me I can’t believe it has been almost 5 months since my last post, it is crazy how time flies.
I thought it might be best to relaunch my blog by giving you all a quick update on what I have been up to, and how I have had to deal with each with my ME/CFS, especially since it is now just over two years since I first got sick.
When I first got sick, I could hardly leave by bed let alone the house, I wasn’t able to work, see friends or do anything really apart from watch mindless tv and sleep.
So fast forward two years and over the past few months some quite major things have happened which I wouldn’t have even dreamed I could do 2 years ago or even a year ago!!!
I have moved house not once but twice, due to a delay in our completion date, now me and my wonderful partner are officially new home owners of an amazing period property, giving us the space we need, a drive so that I can park right outside my door, it is really really amazing!!!!
I have to say I couldn’t have done this without the most the support and help of not only my beloved boyfriend but friends and family.
We started packing way in advance, pretty much doing a box a night in the weeks leading up to our move date, annoyingly we had to move out of our old rental the same weekend as we were supposed to get the keys to our beautiful new home, but when this got moved back a week, we had to move all our belongings and ourselves to my parents house (they are local), our best friends came up for the weekend and helped us finish packing and do lots of convoys with 4 cars over to my parents.
As I was driving as part of the convoy, I rested when we got back whilst everyone was loading and unloading the cars, otherwise I well quite frankly would have passed out.
We hired cleaners to clean the rental, and my wonderful mother cleaned our brand new (old) house.
I took a lot of time off around the move as I wouldn’t have been able to do both, but we did it. Six weeks after moving we still haven’t finished unpacking but we are getting there!
Since May, I have consistently been working 3 days a week at work, which is amazing it itself, I even got promoted at work from assistant to assistant manager which is great news.
I haven’t felt I could increase again, at the moment 3 days is my limit at the moment at least.
I have been able to be able to work, by switching my working hours from 9-5 to 10-6 or 10.30-6.30, having several mini pause breaks (3-5mins) throughout the day, chilled out lunch break and a break mid afternoon to lie down and do a guided meditation. I also have a parking space in the office so that I can park right near the entrance.
If you are thinking about going back to work or need some ideas in relation to a phased return check out my previous post on my phased return to work (link).
I have become really crafty, over the last few months and can do it when I am not feeling too great.
I got a sewing machine for my birthday back in July, I find it really therapeutic creating something out of bits and bobs and it turns out I am quite good at it, so far I have made toy elephant, pencil/ brush cases, advent calendars and even a purse.
To the extent that I have set up my own little esty shop : Sewing to Recovery (Link)
I have decided that I want a portion of proceeds to be donated to charity, I have had no sales yet but fingers crossed!
I have also got into upcycling furniture, seeing as we didn’t have any I have brought lots of cheap furniture of ebay and the likes and painted it with chalk paint, this is obviously I can only do this now and again on really good days but its really fun, and giving something old and ugly a new lease of life and creating something beautiful is really rewarding.
This really is an activity I can do when I have no energy what so ever! My sister got me a colouring book for my birthday, I had been meaning to get one for a while and boy it is amazing! Within a couple of weeks I had brought two more, and now my house is decorated with the really good ones which are now framed.
It is really calming and at least when I can’t do anything but sit on the sofa I can listen to my audiobook and do a bit of colouring and feel like I have achieved something which really lifts my mood.
Coming soon- Benefits of adult colouring
Yes that is plural! I loved travelling going away to exotic places exploring new cultures going off the beaten trail; well I am not quite there yet but back at the beginning of the summer I went on two, week long holidays one with my other half and one with my sister.
Both were all inclusive beach holidays where I did nothing but lie on a beach in the sun all day, mosey over to the restaurant and get drinks brought to me on my sun lounger.
I felt amazing, week doing NOTHING! The sun on my skin there is nothing better, I even got a lilo so that I could float on the sea, as I wouldn’t have had the energy to swim.
Travel was the challenge, my other half and then my sister carried the luggage, I stopped and sat down a lot, and I booked assistance at the air ports and rested a lot before and after travel, so it was doable.
I am able to juggle work, crafts and having what resembles the start of a social life!
I have to pace, and I am still in loads of pain and have to rest but I am defiantly getting there, I have noticed a definite platue in my recovery but I am at a level where I want to improve but if I had to stay like this for the rest of my life it wouldn’t be so bad.
So I make sure my rest days I do nothing vigorous and rest, I have caved and got a stool for me to use when I shower really inexpensive (£15) and it has made the world of difference.
At work I work 10-6 as im worst in the mornings, I lunch at 12.30ish and then even if im not feeling tired (although I usually am) I take myself off at about 3.30 and have a 15min lie down and mediate, stretch and lie with my legs up against the wall at a 90 degree angle.
In the past 2 years I have gone from hardly being able to get out of bed, to all this, and a year ago I was able to work about 6 hours a week only and didnt do much else! So whilst my functionality is no where near what it used to be or that of a typical 26 year old, I am able to do little bits of lots of different things with careful planning and rest.
I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
This one is extra special as the artist has turned is poem into the most beautiful and moving song, I have literally listened to this over and over again, it is honest and realistic rendition of how many of us feel
by Ren Gill
Continue reading
I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
By Ainslie Eccleston
I have a disease that nobody sees,
I cry to the heavens and fall to my knees,
I’ve tried and tried a thousand times,
To crack the code, to find reason and rhyme,
Years go by and I learn to adapt, Continue reading
I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
by Lindsay Nuffer
I dreamed I could do what I saw others do
I believed they were special and talented too
I knew deep inside there was much more to me
But I did not know how to set myself free
I was stuck in a world of impossible dreams
Reserved for others, or that’s how it seems Continue reading
I have managed to collect a variety of poetry written by those suffering with ME/CFS as well as other Chronic Illnesses from all over the world.
By Jody Kurt Schuller
I ran a marathon yesterday while drinking a bottle of liquor!
Well that’s what my body told me while I was staring into the mirror.
The reflection of confusion, what is happening to me?
I realize I need to seek help, but I’m too sick to even see my GP.
But I got responsibilities; a man has to take care of his situation.
Who would have thought this would be a daily conversation?!
Sure, I’ll be fine, it’s just a virus, and it has to go away.
Days turned into weeks, weeks turned into months, Continue reading
One of my spoonie friends wrote about her CFS/ME journey as a comic strip and I absolutely love it, it talks about her journey from the very beginning to right now, she is by no means recovered but her functionality has improved and continues to do so as time goes on.
An estimated 250,000 people have CFS/ME in the UK, 1,000,000 in the USA and 17,000,000 worldwide.
But what do these 17 million people look like? Well a group of us who are on Toby Morrison’s online program thought it would be great to raise awareness to create a video & a collage of a load of our faces.
Many of us with these illnesses and many other chronic conditions find comfort and release in being creative for me its origami and finger painting.
I find a sense of peace comes from doing origami and finger painting is well really dam fun that type of primal child type fun!
Others who are more talented create pieces about their illness in the forms of pictures, abstracts and even toy making like below.
Gluten Free Adventures & M.E 
