• Dressed, but not wearing a bra and still in yesterday’s pants
• No idea what we’re having for tea, but WENT TO SEE THE LAMBS
Priorities people . Priorities. Can’t do it all. But Mr Tree Surgeon told me there were teeny lambs in the nearest village to us (maybe a 2 minute drive) so that took priority over everything else! You mould something of a life with what you’ve got. If I’d showered, that would have been my whole day’s energy gone. Lambs felt more exciting and important today!
Wednesdays are mine. No obligations. No pressure on myself to do housework or the things that actually need doing. Wednesdays used to be my only day to myself, but I’m currently without a PA/Home Help so it doesn’t matter so much at the moment. Wednesdays are my favourite.
My friends, it doesn’t happen very often, but every once in a blue moon, I have a day where I wonder if this is really IT. If life is really going to be like THIS.
Today, as I came to rest in bed after having my sister and nephew visit, I questioned whether my life will ever be more than this. This needing to take to my bed after a relaxing catch-up with someone I’ve known my whole life because the exertion has left me unwell.
And it’s a complex thing to question. Because the very sister who just visited me, in my very own home, is the one who spoon fed me in my Dining Room bed or on the sofa when we lived at home together.
Surely, compared to that time, this should be enough?
I am living a life I never dared to even think about in those early years. I’m the first to tell you I’m happy and my life is good. How I’m living well, within my limits.
But you know what, sometimes it’s not enough. And that is perfectly okay. You won’t find toxic positivity here.
It is still the cycle of Bedbound, Housebound, Little Adventure. Bedbound, Housebound, Little Adventure. I plan and pace and prioritise and I have seen monumental improvement. But it’s still 24/7 illness. Just to a slightly lesser degree. It’s okay if that’s not enough some days. Luckily for me I don’t feel this way very often at all.
I am aware that some of these feelings are a result of my internalised ableism and from living in a capitalist society. But it can all seem quite mundane. Hobbies are the stuff of dreams. Even my children’s polymer clay has been back in its box for months, as I am unable to work the clay.
I would like a job. I would like to spend time with my family without having to weigh up whether or not I can. I would like to never have to visit of Doctor again. I would like to see my friends regularly. I would like freedom from this illness.
So I’m letting it be for today. I’ve had a cry. I’m snuggling down with a soft blanket. I’ve lit new candle. I’ve got chocolate in the cupboard.
You’ll probably have heard by now that I’m getting organised for my M.E. awareness week tea party already. Alongside the Real Life event in Stamford, Lincolnshire (please do get in touch for more information if you’d like to join me in person) I will again be hosting a virtual tea party online.
It’s quite simple really. Here’s a rough guide of how to join in on Sunday 17th May from the comfort of your own home.
• Dig out your best mug or loveliest tea set.
• Make sure there’s cake in the house.
• Drink tea and eat cake.
• Take a photo of you doing so.
• Post it in the Facebook Event or on Instagram or Twitter under the 2020 Blue Sunday hashtag.
• Donate the price you’d expect to pay for tea and cake in a café to the Blue Sunday JustGiving page if you’re in a position to do so.
• Feel part of the Real Life event as Anna shares videos and photos.
• Chat online with others. Comment on how delicious each other’s cakes look or swap your favourite recipes. Best of all, potentially find new friends or new accounts to follow.
• Cheer Anna on as she tries to socialise for 2 whole hours at the Real Life event!
I am feeling very poorly, even by my standards. But I am also feeling very loved and understood. Recently, I have noticed how so many of the people around me now seem to grasp that Get Well Soon doesn’t fit here.
I won’t be getting well soon, but you hoping for better and easier days ahead for me is such a lovely thing for me to hear from you. With that, an acknowledgment of how hard things must be is also such a strangely wonderful thing for me to hear.
Your understanding and acceptance of my reality is what makes the biggest difference to me. I’ve said time and time again that I share my journey not for sympathy, but in the hope I might get true understanding.
I know it can be sad for you to think that Get Well Soon doesn’t quite fit for me. It’s totally okay to feel sad about something that’s sad. M.E. is so far from the normal, temporary sickness the majority of people will experience, where you’re back on your feet after a week or two. But I’m not sad. Not at the moment. I have such a good little life that I’ve been able to mould around the restrictions placed upon me by faulty energy production. My life is hard and different and it can be very frustrating, but it is good. I feel lucky to be me. And I’m okay in myself, as tends to be my answer when asked that dreaded “How are you?” question.
I get a shock too, when I think of how much time has passed and how my incredible progress is still really only a drop in the ocean in conventional terms. But mates, more often than not I can peel the top off a new pint of milk AND unscrew the lid off the coffee jar by myself. What more could a person want?!
In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t have M.E. themselves so can feel too far removed from it all. Sadly, for some, it’s a case of “I’m Alright Jack” where they feel they don’t need to get behind our cause because their life is perfectly fine thank you. Whatever the reason, they may not seem as fully invested in our cause as we are.
This can be sad and frustrating and hurtful for us as sufferers. Our lives have been turned upside down by this illness and so it can feel like a slight, when those around us don’t fully engage with blog posts or our petitions or with choosing an M.E. charity for their own sponsored event.
This is where the tea party really helps me. It’s been a way to involve the people around me, who do not experience M.E. first hand. Rather than feeling rejected that they don’t read the latest articles on the latest research into M.E, for example, I invite them along. I’ve found offering tea and cake is a very good way to persuade people to get behind the cause. A really good way! The tea and cake is what brings us all together and ultimately what gets people through the door!
Each table has information leaflets about the illness, articles discrediting the wretched PACE trial, a case study about a sufferer with Very Severe M.E, and information about what the ME Association does on our behalf.
While catching up over tea and cake, they have the leaflets to read. I’m around to answer any queries about the condition that they may have. My husband and my parents help with that too. I throw as much information at my tea party guests as I possibly can, but behind the loveliness of a tea party.
For me, M.E. Awareness week can be quite depressing. I already know the devastation this illness causes. And to see so many others suffering too, through social media campaigns, is so upsetting. If I find it hard as someone who does ‘get’ M.E. I can understand how non-sufferers can feel the same. But the majority of people joining in with such campaigns are sufferers themselves. Their immediate families may join in too but we don’t always get people outside of our immediate circles participating with us.
The tea party allows me to reach a wider audience outside of the M.E. community. An audience that may not have encountered M.E. before, and certainly hadn’t known the true facts as the only information the majority of my guests had ever had was taken from media outlets who leave much to be desired in terms of accuracy. I’ve had local people arrive on the day with no previous knowledge of M.E. They’d just seen in the local paper that there was tea and cake at a village hall across town on a Sunday afternoon and decided to pop by! Fantastic!
For most of the people that come to my tea party, I am the only M.E. sufferer they know. It is incredible to have their support year on year. We have family friends who are GPs and nurses, or trainee doctors. They’ve all been and they’ve all had leaflets thrust at them as they sip their tea. I always hope people leave knowing more about M.E. than when they arrived.
For me, it is always an uplifting day. And that is what I need during M.E. awareness week, where I often feel like I can try to educate people until I’m blue in the face, only for them to never fully engage with what I’m trying to say. The tea party allows me to educate non-sufferers in a way I am otherwise unable to do so. I hope you’ll be able to join me.