Category: CFS/ME

January, still

Somehow, we are still here. Even though this month started years ago. How many years? Nobody knows. We stopped counting after the first trillion.

But on it goes, endlessly, mirthlessly, punctuated by funerals and re-watching TV series you’ve watched eight times before.

Sunshine has become the currency of joy – a currency no-one can buy and no bureau de change can sell.

And why, when I’m doom-scrolling, does the amount of ads I see seem to double incrementally each endless fucking day? Buy! Buy! Buy! there’s sod all else to do.

Only there’s loads to do, but it’s either unpalatable or the energy cannot be found, cannot be generated, cannot, can’t.

So the hallway remains covered in mud brought in from a rare walk outside and the shopping remains in bags on the kitchen floor – why spend energy you don’t have to wipe down and sanitise everything when you can leave it for a week in the hope any virus will die on its own. Doesn’t it know time is meaningless? Why does it still cling to surfaces like my claws around my phone?

How, HOW, is it still January? Though it appears on the calendar that today is the last day of this godforsaken month, is it in fact a trick? Will we wake up tomorrow to find it’s still January 31st, an endless day, every day, until we forget February ever existed? Until we forget we ever existed?

And February has traditionally always been a shit month anyway, with its Valentine mockery and cold wet days.

But (because there is always a but, there has to be a but) the daffodils are coming out. There are bunches in my living room right now. Dying, I grant you, but it’s been a week and they opened in a day and shot through the gloom with their sunshine yellow. Outside, at some point in the night, the bulbs pushed their stems up through the earth and they are waiting, waiting to burst open – tulips and daffodils and crocuses.

If this month ever ends.

If this month ever ends, then the daytime will push into evening and the buds – I’ve seen them! – will open like popcorn into white and pink blossoms and colour the streets with joy, with beauty.

If this month ever ends.

If this month ever ends, there will be anniversaries and birthdays and nights without all the blankets, days without all the socks.

If this month ever ends.

If this month ever ends, and the next month and the next six after that, I will turn 45 and I will be 45 for everyone who never got to be 45.

If this month ever ends.

Body said No

Crashed after breakfast. Beautiful blue sky outside and beloved sunshine, but body said ‘No’.

Wanted to join my parents for a trip to the park but was pinned to the bed, unable to dress.

Crashed again midway through dinner. Had made it downstairs to the table. Couldn’t hold my head up after the soup.

Just went to the kitchen and spent several minutes standing with plate in hand, too confused to work out where to put it.

This is all I can write. This is something, I guess. A boring record of a boring day.


Happy New Year (2021 edition)

Oh hello, 2021. No, no fanfare, no red carpet for you, but, if you would like, come sit on this old broken-down sofa and join me for tea. Don’t be shy, I’ve no expectations. You may be new, but I am too old to be taken in by shiny pretty new things. Ignore the the clamouring crowd outside. They don’t know you, though they’ve waited long enough. None of us do, yet. They’re just excited, because you are not your predecessor, so you’ve been deemed a success by what you are not.

So much weight on your young shoulders. As if you’re in control of what will happen, rather than just a vessel. But you’re unblemished, and full of promise, something to pin the feathers of hope to with a safety pin.

Yesterday, on the last day of 2020, I could not stand, or walk, or wash, or dress, or sit up for long. Most of the day was spent in bed, unwashed for three days, unable to form words, or keep my eyes open, while my mind raced inside my skull and I held onto walls and doors for visits to the bathroom. Today I showered and dressed and spoke and wrote and walked briefly in the freezing cold air and ate my meals sat on a chair, enjoying the strength of my body that wasn’t there yesterday and may not be there tomorrow, because those moments are rare and are to be savoured no matter the hour, the day, the year.

I ask nothing of you and I hope we can be friends. Don’t let your tea get cold. Have a biscuit.

The hunger and the fog

My brain is guzzling words right now. Like a little pacman, desperate to fill its face with information. My brain is hungry, waking from its long torpor, swallowing novels, articles, reviews, more, more, more. More input. More input. Must have more input.

And then it stutters, mid-sentence, mid-gulp. A frozen pacman, stuck with its mouth agape in a progamme that won’t run anymore. Put the book down. Close your eyes. Computer says NOPE.  Pick up phone and scroll, scroll, scroll…

Oh Hi! I wrote some stuff…

Life’s been quite tough lately – my shoulder frozen, my brain foggy, my body of little use. But I managed to have a couple of stories published in the cracks where the light got in – The Puzzler – which you can read here and Exactly the Same Only Smaller, which is published in the latest issue of Here Comes Everyone – Rituals.

After a week of recovering from a steroid injection and all the fun of visiting the hospital while disabled and in pain, I am finally gaining a little energy. Today I managed to walk to the shop 🙂 Onwards!

Today was a good day

So. Today was a good day. And I wanted to tell you about it. But then I thought, what if they think you’re fine and don’t need any help? What if they think you’re just moaning about stuff? What if they think you’re making it up about all the bad stuff? What if someone from the Department of Work and Pensions sees this and decides you don’t deserve/need to be on benefits? What if when you mention you’re on benefits someone/everyone thinks you’re scum/useless/a drain on society/having a laugh/a faker?

And you may think this is ridiculous and the ramblings of a crazy person, but it is really common for people with invisible, chronic illnesses to feel like this. I feel guilty and judged pretty much all the time. I refrain from posting a lot on social media because the anxiety that comes from feeling judged, or from people thinking that a picture of you outside and smiling means that you are fine and well and this is normal for you (without knowing what it took for you to even get outside or the fact that you haven’t been out the house in weeks), is huge. And because there are very real consequences of people thinking that.

I am unable to get out a lot of the time, to participate in activities, to travel etc. I rely on a lot of help (finanical and otherwise) and understanding – and without that I’d be literally helpless. And homeless. And friendless.

So I want to tell you about my very good day and explain the difficulties I met and how I navigated around them*.

Firstly, the fact that I managed to do anything today, was what made it so ‘good’. Because I have barely left my flat in 12 days, with the exception of two, brief attempts at a walk outside in which I managed to get less than 50 yards away (with my walking stick), before giving up and going back home as I was too weak to mamage more. Each round trip took me about twenty minutes and is quite scary when you are on your own and feel like you are about to collapse. Even in my own home I’ve had trouble walking, needing to hold on to furniture and walls far more than usual. Essential tasks like washing up, cooking, and washing have been beyond me for most of these days and I have relied on help from visitors or just left things to fester. I bathed every other day to save energy and spent most of my time lying down.

So this morning I was fucking desperate to do something and go somewhere and just get outside! And reader, I did! 🙂

Even before I went out (which I always think of as an ‘attempt’, because I never know how I will end up), I managed to do one load of washing! And a bit of washng up! And I had a bath! Glorious! Of course the bath was needed after the washing up, because at that point I was knackered and desperately needed to lie down and rest.

I headed out to the nearest bus stop – which in the past would take me about 60 seconds to walk to, but which now takes nearly ten minutes – and a woman passing asked if I was okay. Yep, I said, not able to engage as I was concentrating on getting to the damn bus stop. It was a four minute wait, which was difficult as there was no seat, but there was a wall I could lean on. At this point I always have to ask myself if it’s sensible to actually get on the bus and go anywhwere. Because if I’m already feeling weak and tired, then it’s only going to get worse as every action will deplete me further. I have to think carefully about where I go – how soon will I be able to sit down? How will I get back again? What if I need the loo** – how far will I need to walk to get to it? How noisy/busy will it be***?

I decide on the Dulwich Picture Gallery because it’s on my bus route, not too far away and the bus stops right outside the entrance. It has lovely tranquil grounds at the front and I can sit in the sunshine or the shade.

When I arrive, I decide to treat myself to a cup of coffee. I don’t have enough energy to walk into the cafe and order and then go find a table, so I head straight for a table in the shade and figure I can order from there instead. There are no free tables close enough (those that are will be too far for me to walk to), so I ask a lone man at the table if I can share with him. It is awkward at first, but soon, using the ever reliable British opening gambit of the weather, we strike up a conversation about art, and cities and finally France and Spain and our respective travels there. He leaves to go to an exhibition and I discover when I ask for my bill that he has paid for my coffee. I am having the loveliest day!

I want to go into the gallery and look at some paintings. Talking about art exhibitions with the man has made me realise how much I miss it. I get up and test how sturdy I am in the moment – the gallery entrance is the same distance from here to the main entrance (about 10 yards). Even if I can’t walk to see any art, I decide to risk it anyway and make my very slow way to the entrance. Because I am on benefits I can see the permanent exhibition for free, which is good as I can’t afford it otherwise. They have wheelchairs in there. I have been using a wheelchair when I have someone to push me, for a little while now (and always in hospitals – those long corridors are way too much for me, even on a good day) but I’ve never wheeled myself in one. Because of the fatigue, having to wheel myself seems counter-productive, but I decide to have a go as it’s such a small gallery and at least I can sit down. The staff here are really helpful and friendly. They put my walking stick behind their desk for me (there’s nowhere to store it on the chair) and off I go. I find I am instantly in people’s way and they in mine. It would be useful to have an old-fashioned bicycle bell to let people know I’m there, as they don’t seem to notice when I can’t get through, but I’m guessing that’s not terribly appropriate here.

I soon get used to steering and turning and go look at the beguiling Girl at a Window by Rembrandt and some exquisite flower paintings by Jan Van Huysum. It is strange, looking up at the paintings from this height, maneuvering around so I can see them without the light obscuring the details, trying not to bump into the furniture (or people). I feel a little proud of myself for being able to steer the chair around so quickly. There is no way I would have been able to walk around this relatively small gallery. Even though I am having to use my arms, just being able to sit and not spend energy on standing and walking is a huge relief.

Nevertheless, I am starting to flag. I make a quick trip to the gift shop, because I am slightly obsessed with museum gift shops. I bump into an old aquaintance who I haven’t seen since before I got sick. I make the usual explanations and she is very sympathetic, but this bit of conversation is wearing me out now and I suddenly can’t stop yawning. Negotiating the tight corners of the small crowded shop is difficult, especially as there is another wheelchair bound person there and we are trying not to engage in a game of dodgems. I keep saying sorry. Everyone keeps saying sorry. I make it out alive. No toes are harmed in the process.

At the gallery entrance, I retrieve my stick and a staff member helps with the wheelchair. My body can barely hold me up anymore. I need the loo, but it is too far to walk and I reckon I will be able to hold it until I get home. The bus stop on the other side is further away for the journey back. I know I’m not going to make it. I’ve learned the hard way that sometimes you just have take a taxi or risk a certain crash.

For all that I find Uber’s business model ethically problematic, their app has been an absolute godsend for me. There are times when I get stuck – I simply cannot walk anymore, however near that bus stop seems. Even if I can make it onto the bus, I’ve got to walk those 50 yards at the other end and that can be almost impossible. So cabs for short distances, even though it’s extra expense, have become essential (how else would I get to and from the doctor just down the road?). But with regular minicabs, there are problems: if I am so fatigued that I can’t speak (this happens often) it is very difficult to call and book them; I might not have any cash on me and how am I going to get to a cashpoint (which might be even further away than the very short journey I need to take)?; they can take forever to arrive and I might not have anywhere to sit and wait. Even when they say they will be ten minutes, you never really know how long it’s going to take and if I am on the pint of collapse, those minutes count. But with Uber, I don’t have to deal with any of that, so that’s who I turn to to get home today. If I hadn’t, I would have crashed badly and not been able to eat when I got home.

Which is what I did. Hungry and knowing I would collapse if I didn’t get something in me fast, I spread some peanut butter on a slice of bread and ate it quickly. Then I lay on the sofa to recover. After a while, I felt a bit of energy come back, which was a nice surprise. So I got myself a bit more food, then lay down again, spent. I haven’t moved since. That’s it for me today.

I have had a DAY OUT. Well, a couple of hours. But this is so, so wonderful. I did try to write earlier in the week, but until now my brain just wouldn’t work. This is really common too and I’ll write about the joy that is brain fog another time. To be able to do a couple of household chores, walk to a bus stop and actually go somewhere, talk to a few strangers and look at some art and write about it when I got home – this is a bloody good day and I am so happy. I don’t know when I’ll have another one, so I’m savouring every moment for the time being.

Thank you for reading.

Take care,

Stephanie xxx

*Symptoms and experiences of CFS/ME differ from person to person. I can only tell you how I experience it.

**Needing to go to the toilet can make me far more tired and weak as ‘holding it in’ requires energy and so it is important I go as quickly as possible as I don’t have that energy to spare.

***Noise and busyness depletes my energy, so if I’m already feeling very tired, too much will make me crash.

IMPORTANT NOTICE: Unless you have experience of CFS/ME yourself, please don’t comment about things you think/have heard/your Aunty Doris said will help. I know it comes from a place of kindness, but if there’s one thing I’ve learned over the last year, it’s that unless you have experienced this yourself, your opinion isn’t helpful. If this sounds harsh, then please note that it’s been learned the hard way – everyone seems to have an opinion regardless of whether they actually know what it’s like and I just don’t have the energy to deal with or read them all. Thank you for understanding.

In which I disappeared for a year…

So. You haven’t heard from me for a while. There is a reason for that. My life, and I, have been changed irrevocably these last 12 months. One year and one week ago, I came down with a terrible ‘flu. This turned into pneumonia. Bedridden, my parents took me in and took care of me and the doctor demanded to see me twice a week until I recovered. Only I didn’t recover. Not quite.

My lungs, after a couple of months, finally healed, and yet I never got ‘fit’ again. I have finally, after quite a horrific journey, been formally diagnosed with Chronic Fatigue Syndrome (CFS).

Did I say ‘changed irrevocably’? It feels more like having my life ripped from me. The pictures you see on this site of a young fiesty woman gallivanting about in sequins and shorts, offering writing tips and workshops, joking about office politics, taking part in film festivals, winning awards (well, award singular 🙂 ) and generally living life with gusto has gone and I’m still grieving, so forgive me if I don’t write about it in full just yet. Just getting these words down now is making me cry and if I take the lid off this can of worms, I’m not sure I can cope with the rest of the day and coping is what I do, every day.

Oh there are good days, of course. I can find joy in the simplest of things, even more so now. When getting outside, reading, writing, doing anything becomes a luxury, then believe me, you enjoy the small things as the beautiful gifts that they are.

That’s all for today. I didn’t know where to start with all that’s happened, but I needed to get this down and writing is my way of making sense of things. I hope it helps you too, in some way.

I know that I haven’t explained yet what CFS (also known as M.E.) actually is – I haven’t got the energy to right now – but this is a good place to start if you’d like to find out.

Take good care of yourself,

Stephanie xxx

IMPORTANT NOTICE: Unless you have experience of CFS/ME yourself, please don’t comment about things you think/have heard/your Aunty Doris said will help. I know it comes from a place of kindness, but if there’s one thing I’ve learned over the last year, it’s that unless you have experienced this yourself, your opinion isn’t helpful. If this sounds harsh, then please note that it’s been learned the hard way – everyone seems to have an opinion regardless of whether they actually know what it’s like and I just don’t have the energy to deal with or read them all. Thank you for understanding.