Tory Majority Day 17: Bank Holiday Socialising With My MECFS Friend, CB.

I have a very good friend who I met because of one thing; she and I both have ME. 

The universe must have had both of us in mind on the day CB and I met. She’s one of those people who if I’d been in a room and met her when I was 16, 26, 36 or older, with or without ME, we still would have become firm friends – we have SO much in common it’s absolutely spot on.

It’s one of those friendships where you finish each other’s thoughts – which is SO handy with brain fog – think similarly to each other, we have had such a similar life – and not only because of having ME and we share similar interests too.

Oh and we laugh a lot. 🙂 Because we both have the same illness we can laugh at it in a way someone without ME can’t because they don’t get it right.

For instance, my sister HS and her husband Mr S, seem to think it’s funny saying:

“It’s all about ME, ME, ME.” The stony silence they get from my side each time they’ve said it made it stop.

With CB we  take the piss out of our symptoms, laugh about the treatment and poke fun at what it’s like to have an illness that has utterly altered the course of both of our lives. God, it feels good too!

CB. Laughing about CFSME in the right way.

CB. Laughing about CFSME in the right way.

CB is such a positive, strong and enjoyable presence. We’ll know each other for the rest of our lives as well. I really can say that I have no doubt about that even only a year and a bit into knowing her.

I think it’s because we have so much in common but also because when you meet someone you do not have to “edit” the bad stuff with, the bond is so much more complete.

The thing is we both DO have ME and whereas usually with friends like CB you’d spend lots of enjoyable time together – we can’t. If I was well I’d definitely spend more time with CB or any other friends.

In this post I said that I don’t know how people ‘did’ having ME before social media. CB and I keep in touch over Facebook.  Facebook works so well for me – I feel connected to people’s lives even though in some cases it’s been months and months since I’ve last seen them.

It’s the same with CB too. When there are long silences it’s not like non-ME friendships where it might be because they are ignoring you, or they’re having a bad week at work or you’ve had a fight, it’s a sign of how bad our ME symptoms are. Even keeping in touch over Facebook can be too much to face some days.

How we do socialising – The Rules

We have “The Rules” that we follow about arranging to meet up.

The Rules are that we say we are pencilling in meeting up with each other. We never say: “definitely see you next Saturday!” because we know that it depends on how you feel on the day as to whether you can keep a commitment.

On the morning of an arrangement we text each other by 10:00 am to say if we are well enough. We both don’t mind if the other cancels because we know it’s for a good reason. It’s not an excuse, it’s because we are really not well enough.

We never arrange to meet up later than 2:00 in the afternoon because evenings are never gonna happen – by the evening we are too filled with exhaustion and tiredness. Going out in the evening, ha ha ha. Never!

If all the planets are aligned in our ME universes and all that is OK and if we have enough spare cash with our ESA payments fortnightly, we meet up. WOOO!

So when we do meet up it’s a very special occasion.

CB and I worked out that we haven’t seen each other for almost 10 months. What that means is that for 10 months and following The Rules, neither of us have been in the right place or well enough to consider going out for a few hours and doing nothing but sitting drinking soft drinks or tea and chat.

That’s sad – it shows how both of our lives have been over those 10 months – but we certainly made up for it.


No drinks

Both of us can’t drink alcoholic drinks because our ME symptoms are made 100000% worse by alcohol. We’re TT. I gave up almost 2 years ago, she’s tried drinking a tin of beer in that time and said it felt like she was being poisoned afterwards.

It wasn’t because it was a can of Stella either, it was how bad the payback is.


We talk, a lot, but we also make mistakes remembering things like personalities names, we veer far off topic because we’ve forgotten what we were talking about to start off with and often leave conversations completely unfinished. That’s because our cognitive symptoms are as bad as our physical symptoms.


Yup. There’s a lot of sharing. We usually talk about what the NHS treatment is like – we have done the NHS Lifestyle Management Course at the ME clinic and we both think it’s terrible, patronising and irrelevant. We’ve worked out how to deal with our illnesses our own way.

PIP, no. 

We catch up with where each other is at in terms of any applications we are making, like for PIP. Both of us have decided that the appeal process and system is so stressful and weighed against the claimant that we aren’t going to apply for PIP (we can hear the government punching the air with delight at that as it helps their welfare cuts – 2 less PIP payments in the budget).


We talk about how worried we are about a new Work Capability Assessment test coming up and how much we hope that MAXIMUS, the new provider now ATOS has been sacked, gets it more right than they did.

We both were assessed as fit to work and appealed. CB’s appeal went all the way to Tribunal, mine was heading in that direction but I won my appeal before it got to that stage, thank GOD!

Anxiety and ME


We both feel anxious before arranging any social time. Anxiety has been a part of both of our lives since becoming ill with ME.

We see it as a sign of the neurological impact of the illness and talk a lot about neurotransmitters and serotonin and how the brain works and how it makes us feel.

I tell her it makes me jump out of my skin at the smallest thing and she says she does the same thing too.

She tells me how she feels nervous about even meeting up and I tell her I often feel that way, particularly when I’m tired and under par.

We both pleased that we felt the fear about socialising and did it anyway.

We’ve both sought counselling – not NHS based CBT – to support us with the changes that ME has meant to us and our lives and have found it very useful.

Cutting contribution based ESA??!!

We both talked about the election. I’m on Contribution Based ESA and in the Support Group. She’s on Income Based ESA and in the Support Group. Until we started talking about it, I hadn’t realised that the government was looking at scrapping Contribution based ESA entirely.

That’s utterly and totally unfair. What that means is that the NI contributions I made throughout my working life will be used to ‘pay the deficit’.

Come on Tory government – you are directly taking what I paid with my NI and using it? If that means I go onto Income Based ESA it will still mean the same thing – I don’t have any income so it shouldn’t affect me I hope, but really. Directly reaching in and taking people’s NI contributions who are sick and ill and taking it.

Living circumstances 

She’s not quite in the same home set up as I am, but it’s still not ideal and as the both of us have been through trying to find rental properties with landlords who will accept people on benefits and found that there aren’t any – she even put an advert in a local paper – we have a lot to talk about in terms of my council home application. 

Welfare cuts are daylight robbery

Both of us agreed that at the moment we feel it’s the calm before the storm. We aren’t watching the news because it’s affected both of us profoundly and have a sense that the government is waiting to announce all the other policies before getting to the welfare cuts. We’ve already braced ourselves, we are simply holding our breath at the moment.

It’s a bit like how people felt after World War 2 was announced and before the Blitz started.

Then for the rest of the time we chatted about 100 other things.

Arnie I'll Be Back

Payback but worth it 

Afterwards payback kicked in. Payback doesn’t discriminate. It happens whether you are doing something enjoyable or not. It happens whatever.

The only thing you know is that it IS on the way. It rubs out you and your life for at least a day afterwards. Bye bye the next day. Hello ME symptoms telling you you’ve done too much.

But when I’ve seen CB it’s worth it. I am feeling so happy and filled up with enjoyment still today 🙂

© Lindy 2015 


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