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 fo 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.
March 2019: “The recommended 6-8 weeks of counselling will sort me right out as I try to process the fact we won’t be having children because of my health condition.”
February 2020: “See you in a fortnight for the next session!”
I started for The Baby Thing. I’ve stayed for the nine years of living with a health condition the majority of people either don’t believe in or have incorrect views of. Nine years of grief and loss and medical neglect. Nine years of trying to hold my head up high against the stigma of a health condition that is so debilitating I wouldn’t wish it on my worst enemy. Nine years of sometimes putting on a brave face to spare those around me from more heartbreak and sadness.
I can’t quite express how reluctant I am to talk about this sometimes. I have a health condition that some people wrongly believe can be ‘fixed’ with talking therapies, or Cognitive Behavioural Therapy, or psychological treatment. I am NOT receiving help for my physical health condition. I am receiving help for the impact that health condition has had on my life.
The thing I’ve realised about counselling, is that is opens a can of worms. One you can never get the lid back on. It’s more than having a family of my own that I’ve lost. There’s a lot to talk about it seems.
You can read my original blog post about seeking this help Here.
DISCLAIMER: Please be kind. Some people, when commenting on posts (particularly when my posts have been shared on Facebook) seem to forget that the post has been written by a human being with feelings. I do not receive counselling on the NHS. The Cognitive Behavioural Therapy available was not suitable. I am aware of my privilege in being able to have private counselling sessions both financially and in terms of being physically able to attend. Weekly sessions became too much of a commitment and so I either go fortnightly or monthly.
I have got into the habit of writing One Good Thing A Day in a journal every night. I am not able to write too much, usually having exhausted myself by bedtime by just getting through the day. And so one sentence or a few words are enough.
Even on the most trying of days I write something. Often it is just my husband’s name that appears next to the day and date. But if he has been the highlight of that hard day then lucky me. Looking back, most days list more than just One Good Thing. Often three or four will make it onto the page.
For a couple of years I used a Jar of Happiness instead of a little journal. Each day I would write my highlight from the day and then fold the little piece of paper and pop it into the jar. At the end of the year it was so lovely to tip out the jar and unfold each piece, rereading what had made me happiest on that particular day. Many of my friends do this too. It became a bit of a chore to have precut slips of paper ready, and then need to have the energy to fold even the smallest piece of paper. Over the years, particularly since moving out of my family home, my energy is spent elsewhere and so I switched to journal instead.
With only writing the highlight of each day, when I look back over my weeks, months and years it is far easier to feel happy and content than it was when I was having to keep symptom or activity diaries. If you follow my new Instagram account @tea_party_for_m.e you may have seen how I rediscovered years worth of despair and suffering when I stumbled across these old diaries a couple of weeks ago.
Whilst there is still too much suffering at the hands of M.E, focusing on the good parts of every day really helps me stay afloat and I’m so glad I decided to start doing it.
One of the hardest things about this restricted life is not being able to be the person I feel I truly am. On the inside I’m still the same, but the restrictions of M.E. do not allow me to act in the things I want to do.
I’m talking about friendship really. I cannot be the friend I want to be, the friend I feel I truly am, because I am too unwell.
It doesn’t matter that I’d do certain things if I could. It doesn’t matter than my family and friends know I’d be there for them if I physically could be. It doesn’t matter that others will pass on my love or well wishes. It doesn’t matter that people understand I am simply too unwell myself to be with them right now.
It doesn’t matter. It doesn’t matter that it’s out of my control and not my fault. It’s just unfair. The end.
I have been unable to support friends at their parents’ funerals for goodness sake. I’m not going to make a whole list, but from that you’ll get the gist.
I can’t stand that this illness stops me from being the person I was; the friend who was called in a crisis. Part of the support crew of friends who’d pick up the pieces whenever needed. I can’t do it. And it doesn’t matter that they know I would if I could. I want to be able to be that version of myself. And I can’t be.
This is not me fishing for compliments about the kind of friend you think I am. I’m not doing myself down here. I am the best friend I can be, but my point is that I’m too unwell to fulfil my full friend potential. And right now it’s really frustrating. I’m pretty angry about it actually.
Every now and then, after a particularly exhausting time, I will rest and rest and rest, and be that little bit more sensible, and I will wait and wait and wait, for the day I wake up and don’t feel quite so wiped out anymore. Because I’ve rested so well and allowed myself to recover. A* patient. 5/5. Gold star for me.
But then that wiser little voice in my head will remind me that THIS level of wiped out, the one I’ve reached after careful rest and sensibleness, is actually as good as it gets. This level of recovery that I reach each time after socialising or exertion or harder times is as good as it gets. This is my normal; this heartbreakingly overwhelming fatigue, and exhaustion, and pain in my joints and bones, and lack of concentration, and bleary-eyed-ness and sore headed-ness. This my normal.
So I stop waiting patiently and I feel, then shake off, the disappointment that this really is as good as it still gets, and I try to go about my little life at this lower than I’d like level of ‘wellness’.
But sometimes, like today, I can’t help but feel this level is just not enough.
I don’t tend to live in ‘years’, if that makes any sense at all. Since being ill I’ve lived more hour by hour, or day by day, or week by week, or maybe month by month. Years are such big things. And decades…it doesn’t bear thinking about some days. But I’ll join in in saying farewell to 2019. It has undoubtedly been one of my hardest years yet, if I lived in terms of years. But more than anything this year, if I lived in terms of years, has been my bravest and most transformative ever. It rivals that first year of living with M.E. at the age of 21, for strength and resilience.
This year I have been reminded of something I had forgotten. When you live each day in the depth of chronic illness it is so easy to forget that that is what you’re doing. Stay with me. Sure you are aware that your body isn’t functioning as it used to; as it ‘should’. You are aware you’re unable to work. You are aware of your dependency on others. But you create a new normal for yourself and you cocoon yourself in the knowledge that this is your good life. That there is so much joy to be taken from each tiny achievement. You give yourself permission to celebrate things that don’t even register as ‘things’ to some people.
But you, or maybe just I, forget how much of an impact all that really, REALLY has. It is nuclear. Every single day when I make the best of a bad situation, I am still subconsciously dealing with the fact that my life is not as expected. It is not the expected norm.
I’m dealing with some heavy shit y’all. Every single day. (Sorry for swearing Mum!)
So when I berate myself for forgetting to add something ‘vital’ to the shopping list for Mr Tree Surgeon, or I cry at a change in plans that seems completely out of proportion, or I become frustrated that I can’t get to the doorbell in time, or breakdown with every single pregnancy announcement despite months of counselling.
Sometimes I feel quite melodramatic that a seemingly tiny inconvenience can upskittle my whole day. But it’s been pointed out to me that all of these seemingly small and inconsequential things are happening on top of an already huge thing to be dealing with; life with restrictive chronic illness.
I’m doing pretty darn well when I think of it like that. And I have survived and braved this year in a way I didn’t think I could. I have learnt to say No when I need to. I have owned and accepted things in a way I hadn’t before. I’ve held my head higher in some ways, and hidden away in others, just when I needed to in order to survive and get through.
I read a quote a few months ago that sums up 2019 for me I think.
“You are on the floor crying,
and you have been on the floor crying
And that is you being brave.
That is you getting through it
as best you know how.
No one else can decide
What your tough looks like.”
Clementine Von Radics
It has been, without a doubt, an incredibly challenging year with so much to contend with. Yet I’ve done it. Somehow, I’ve done it. I’m really proud of myself. More so than ever before.
This year I have had to focus more on my own personal journey than on my usual advocacy efforts. 2020 will see a return to ‘normal’ I hope, with the Blue Sunday tea party in May being my main aim and focus again.
Not so long ago I wasn’t feeling so good about Christmas time. Actually, I was feeling awful; completely dreading it. But my mum said something to me when I was trying to work out Christmas time logistics and I thought I’d share it here because it might help someone else who may be feeling overwhelmed and swamped in pressure like I did:
“People’s hurt feelings will heal a lot faster than your poorly body will.”
Basically, pushing myself to do things that were really not sensible just to please others was not the right thing to be doing.
So this year, for the first time, I am taking a stand for myself and doing what is best for my poorly body. I am saying No to certain invitations or plans even though it is leaving people feeling disappointed or hurt because, ultimately, I am not very well. Every single day, I am not very well. That doesn’t change at Christmas time. In fact I need to be even more cautious at this time of year because there are so many more social events than at any other time of year.
It’s taking a lot of guts to do this actually. Some of the things I’m saying No to are actually things I have pushed myself to do in previous years. But it’s unlikely that some people knew I was pushing myself to do them. And, as always, it has been very hard and sad to see others sad because of my health. I am missing out on lovely things with my favourite people but that is what I have to do. I am doing the best I can within my own limits. And that has to be enough, because it’s all I’ve got.
So I hope Mumma Jones’s words of wisdom might help someone else in the way they helped me. I think they’re pretty spot on.