Silver Linings

I am a firm believer that more often than not, silver linings can be found on the edge of every dark grey cloud. I can’t make a blanket statement about how Every Cloud has a Silver Lining, but I do think there are there most of the time. I’ve spoken about this on M.E. myself and I before and if you’ve been following for years you may remember these older posts. (https://the-slow-lane.com/2013/09/03/always-look-on-the-bright-side-of-life/) and (https://the-slow-lane.com/2014/01/05/every-cloud/) Of course there are the times I struggle to see any glimmer of silver at all. (https://the-slow-lane.com/2013/03/21/wheres-the-silver-lining/) That’s completely understandable. No-one can be in one constant state of happiness and sometimes it is so much harder to find the positives in any given situation.

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.

Highlights of the Day range from A text from a friend, to leaving the house to go out for a coffee, to managing to drive myself to my sister’s across town, to being able to have a shower, to using a new mug for my morning coffee.

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.

My Jar of Happiness from 2015.

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.

Ready for next week.

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.

Blue Sunday 2020

S A V E • T H E • D A T E

I’m so excited to share that the Blue Sunday tea party for 2020 will be on Sunday 17th May. The venue is secured and now the planning can really start.

Whether you can join me online or in Real Life, I can’t wait to see photos of your blue outfits (yes pyjamas count), favourite mug, best china, or the cakes and treats you’ve managed to bake or buy.

More information on how to join in or how to host your own Blue Sunday tea party to follow ☕️

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Pop the date in your diary.

M.E. doesn’t let me be ME

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.

Waiting

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.

Fresh air on the front step today. Something I can’t always manage.

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.

(PSA. Don’t “At least…” me 😆 Let me be.)

Transformative

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 
for days.
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.

See you on the other side.

Anna xxx