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.