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

You do you

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.

“But what’s best for you Anna?”

Something I have learnt about myself this year, and something that’s been pointed out to me again and again, is that I tend to put other people’s feelings above my own physical health.

“It would make him so happy if I went.”

“They would feel so disappointed if I cancelled.”

“She might feel I don’t care if I don’t go.”

“He’ll be sad if I’m too ill to do it.”

“It will affect them if I don’t go.”

“I should be able to do this for them because I love them.”

“I’ll just block out some rest days afterwards and do this huge thing that I know isn’t sensible in any way but I don’t want to let them down.”

I think it’s just in my nature to be this way. But it can definitely be detrimental to my physical health. Mostly I live well, within my limits, with times when I do more than is sensible because it makes me happy and keeps that cabin-fever at bay. But on top of this I also think about the feelings of others as a matter of priority, often disregarding the seriousness of my health condition.

A recent photo of me on a Good Day, sitting on a bench at Lincoln Castle.

I want to do all of the things with all of the people. (Sometimes I don’t want to do certain things but I do them for other people. Because that can be Adult Life, but I’m talking about my physical health here.)

Something has to change. This year has been transformative and my bravest one yet. But I still can’t master this bit. In fact I’m only just starting out. But you’ve got to start somewhere. Don’t get me wrong, I’m not dreadful at this. I can do it sometimes. But it is most definitely not my default setting. I will have to actively persuade myself to speak up and say when I need more allowances to be made for something to be more suitable for me with my M.E.

I’ve got to hold my head up high and say, politely, “I’m not able to do that.” And it’s not my fault that I can’t. I have tried to do this with confidence over the years but I have buckled when push comes to shove and opted for whatever pleases everyone else instead of what is best for me. I have tried. I am trying. I will keep trying.

I think it’s also important to note that my 21 year old self was once told by a trusted medical professional that if I couldn’t [get better] for myself then I should do it for my parents “so they can get their lives back.” That has stayed with me all this time. Some of you will have heard me mention it before. It’s stuck in the back of my head and that sentence has fed the idea that I’m a burden, that I put people out, that I should just do what’s best for everyone because this is affecting them too.

I take great strength in seeing others with similar health struggles doing what’s best for their own health even when it is so hard and upsetting, for them and those around them, in doing so. I want to be brave like they are.

Suffocated

Sometimes I feel suffocated by my mobile phone.

For ‘safety reasons’ I should really have my phone on me at all times. My health can change in a instant. I need to be able to call or message for help, as I have had to do so many times oer the years now. I don’t have my emergency call button alarm anymore. The local council had to increase the cost of having one because our government is atrocious. So now I rely on my mobile phone instead.

If I call someone rather than text them, they panic. There must be something wrong with Anna. She must need help now. In the past, I have written a disclaimer at the beginning of text messages to my parents if I’m texting them while they’re at work: “This is not an emergency and there is no need to panic!”

If I read a WhatsApp but don’t reply, people panic. Once I had started typing a reply only for the doorbell to ring. So I left my WhatsApp open and the recipient could see I was ‘Typing’. After I’d closed the door I went about making myself a drink, completely forgetting I was mid message on WhatsApp. The next thing I knew, my husband had burst through the front door in a panic thinking I had fallen and was in the midst of an episode of paralysis. I was fine! But I understand the worry. It must be awful for them. I’m incredibly grateful for their care and concern. But sometimes I feel suffocated.

I’d love to leave my phone on the side for the day just to feel a little more free. But if a message goes unread for too long, then people worry that I’m not okay. In the past, my silence has meant something is very wrong healthwise and that I need help. So of course people are going to be concerned. But sometimes I don’t want to be glued to my phone all the time or have to reply to messages immediately. I guess I just wish they could read my mind.

If I am having one of my rare solo drives to my parents for example, I have to text everyone as I’m leaving, and as I’m arrive, and then as I’m leaving again. Aaaaaargh. That actually takes up energy! But I know I need to stay safe. Maybe we need a code. I could simply reply with a certain symbol.

Turning off WhatsApp notifications at the beginning of this year was such a good thing to do. Now when I look at my locked phone screen, I cannot see the unopened messages I have because I was starting to feel overwhelmed by them all. What a problem to have hey. But I am incredibly susceptible to stress and stress to me is very different to stress to a healthy human being.

I don’t have any social media apps on my phone anymore, and haven’t for a long time. I also try to only use my phone for messaging and the rare phonecall. It’s lovely to have people check in on me. And I do need them to. But the weight of it all can become heavy. Sometimes I just wish I could have the odd day where I was safely able to be uncontactable for a little while. That’s true freedom and independence to me…

Reviving ‘My’ Wednesdays

Most of this year had been dominated by counselling. First it was every Tuesday. Then every other Tuesday. And now I hope it will be just one Tuesday every month.

When your health places so many restrictions on your life, like my health does, something like an emotional weekly session completely dominates the remainder of your time. The preparation rest. The recovery rest. The exertion of getting there, albeit only minutes away. The concentration and cognitive function needed to get through the 50 minutes. And then the emotions themselves. It wasn’t something I entered into lightly but you’ll likely know by now that it is my struggle with childlessness that led me to seeking help. (I plead you not to offer any unsolicited advice on this.)

Absolutely no obligations on a Wednesday so savouring the Autumn sunshine

At the start of the year I wanted to make something of as many Wednesdays as I possibly could. They are the only day I have to myself. They are sacred. But then I started counselling and so my weeks have been spent recovering from each session in the many ways one needs to.

Perhaps it’s a strange thing for me to crave; these days to myself. Afterall I live such an isolated life. It’s just that it’s the one day I can properly relax because no-one is expected to call in at all during the day. Rightly or wrongly, if someone is coming at 1pm the morning just isn’t as relaxing beforehand. And there’s something different about having nice time to myself, as opposed to the enforced solitude of Bed Days when I am too unwell for any company.

So now I hope I can manage on monthly counselling sessions, in the hope that I can get a little bit of my little life back. I feel it’s time, and I’m looking forward to making something of my Wednesdays again.

M.E. myself and Anxiety?

I’d say I had my first real taste of Anxiety in the first month of being ill. I had managed to painstakingly slowly cross the road in our little village in an attempt to get some fresh air and stretch my legs a little bit. But then I had this overwhelming feeling that I couldn’t get back across the road safely. I couldn’t trust my legs or my body to do that anymore. They weren’t the legs that had captained every sports team at school. They weren’t the legs that had (begrudgingly) climbed mountains on family holidays. They weren’t the legs that were first up on any dance floor. My journey with Anxiety has gone from there.

There is so much to say about it but finding the words is hard. I will try again another day.

There is too much time to think and there is now so much more to think about. On top of the standard worries that I have too much time to think about and worry over, I also have the bits of life that M.E. impacts to think about. And again, too much time to sit thinking about them.

With a condition like M.E, the sufferer has very little control; over their symptoms, the relief from those symptom. Very little control over aspects of their life that they have be able to independently tackle their whole young adult life.

For me, I have to acknowledge and engage with these worries for them to even start to go away. I feel an instant relief once I’ve voiced certain worries with certain people.

I don’t always want to be told that I need to work on my thought patterns. I know that and I am trying harder than you’ll ever know. I don’t need or want suggestions that might help.

Sometimes I just want to hear that you’re sorry it’s so hard. Because it really is.