Rant

I'm writing this because I just need to get it out of my head. Because it's 4pm and I should be asleep at this time, especially as I haven't slept properly so far today and I'm already exhausted from a tricky week and if I don't get some sleep soon I won't be able to sleep tonight - but I can't sleep. Because I can't seem to process this stuff in the privacy of my own mind and let it go. Because my heart is thumping and I can't seem to relax. Because I feel like crying (ok, I AM crying), and I know it's silly, I know they didn't mean it, I know they didn't understand what they were saying... but I just need to get it out of my head so I can relax and get some rest. I don't know if I'll actually publish this or not, but I definitely need to write it.

People say things they don't mean. I know that. I know they just say the first thing that comes into their heads. I know they're just trying to make conversation, to fill up what they see as an awkward silence. And what I need to vent about is by no means the worst unthinking comment I've ever heard; the prize for that probably goes to the person who told my sister,
"Cheer up, it's not the end of the world", not long after her baby had died at 3 days old - yes, seriously! So I really do know that what I'm about to write about is not a huge deal in the grand scheme of things, but it's causing me issues, so I need to get it out for the sake of my health.

I have agency carers each day, who let themselves into my home, see me in an incredibly vulnerable state, and have to do very personal things for me. I am HUGELY grateful to them for helping me, and I know it's often a thankless job. Most of my carers are wonderful, and some are so good that I would employ them directly if that wasn't against the rules. Still, though, this is not a situation that I would choose. I am a person who likes being in control (yes, I know, that's a bit of an understatement), and I like my independence - well, I did when I had it. I don't get to choose who comes into my home to care for me; the agency send me a list each week of who will be coming when. And there are certain names that make me feel tense when I see them on that list, just like there are certain names that make me breathe a sigh of relief because I know I'll be ok with them.

I have a lot of trouble with cognitive impairment, and any overexertion - including cognitive exertion, such as thinking and talking - can cause serious pain, weakness and other physical issues, and can lead to a relapse of the ME. However, I am a people person, and really miss being out in the big wide world and chatting with people, so I tend to talk more than I safely can when I do see someone, and I'm not very good at stopping myself from doing that, which means that a lot of the rest of the time I am a spaced out zombie. Also, my brain just does not work very well, and communication is often difficult, so carers often used to end up leaving before the allotted time was up, because I could not remember or could not communicate to them what I needed. In order to try to reduce these issues, I spent several weeks writing a detailed list of tasks for the carers, including where things are, my likes and dislikes, my issues with noise and light sensitivity, variations in what I might need depending on how bad of a day it is, etc etc. The idea is that I shouldn't need to talk at all if I'm not up to it; the list is my voice, and it's worked really well, with carers who choose to follow it.

A couple of days ago, a carer visited who doesn't come very often, and who hasn't been here since before I wrote the list. She isn't a carer that I've particularly clicked with, but that's ok. What's not ok, though, is when I told her I'd written a list so that I didn't have to think or talk too much, she laughed and said, "Oh, I've heard it all now!", as if I was being ridiculous. I don't know if she thought I was being lazy or what - but I felt that she assumed I just couldn't be bothered to think. I let it slide; I don't have the energy or cognitive ability for a confrontation, and I don't need the inevitable adrenaline surge, so I just pretended she hadn't said it.

Today, though, there was another carer who I find difficult. She seems to find silence awkward, and either has not read or does not remember the information I have provided about noise sensitivity causing me physical pain and other repercussions, as she chats or sings or whistles to fill every single second. I am therefore exhausted after every time she visits; my husband can see a physical difference in me even many hours later when he gets home from work, and can tell if I've had particular carers. So I do appreciate that I am already on edge when anticipating a visit from this carer, so my reactions to her may not be as good as they could be.

I don't think I'm over-reacting, though, by being upset when she tells me I'm lucky to still be in bed at nearly midday. And how tired she is and how she's finding it difficult to think and how, when I got confused about something, we're as bad as one another. No, no, we're really not. You have no idea what it's like to be in my situation - and I'm truly glad that you don't - but please don't pretend that things are the same for us both. I know she works long hours and I am not unsympathetic to how she feels, but I am not the person she should be talking to about that, and when exhaustion and cognitive impairment are two of the specific issues that put me in the vulnerable and undignified position of needing her help in the first place, comparing how she's feeling to how I'm feeling is just insensitive and rude. I also don't need to be asked for the umpteenth time, "What else would you like me to do?" - especially when my response every other time has been, "I don't know, please could you look at the list?" And it's frustrating when, having asked her so many times to look at the list, and when she's left a bit early because she said everything on the list was done, I later find some jobs that weren't done. Nothing major - I had food etc, and it really wasn't the end of the world - but still, everything that is on the list is there for good reason.

She's due again on Monday, and I'm already dreading it.

And I know I should probably just ask the agency not to send her again, but right now the idea of that feels too stressful.

So, I've got it out, I've vented, and I do feel calmer for it. Should I publish this? I think maybe I should; this is an important issue, whether we're talking about people with illness/disability, people who are bereaved, or anyone with a different experience to us; we all need to think more carefully about what we say and how we treat others. (And I'm not for one second suggesting that I never 'put my foot in it' - I need to learn this stuff just as much as anyone else.)

We are all bound to come across people who have life experiences that are outside of our own experience, so there will inevitably be things about them that we don't understand - and that's ok. I really don't want everyone to be able to understand how things are for me, because the only way to understand what it's really like to have this disease is to have it, and I wouldn't wish it on anyone. So, in my opinion, it's ok to not understand someone else's experience - but what it's not ok to do is to make assumptions about what the other person 'must' be feeling, or to ignore information that the person has given you to help you understand. If someone tells you they can't cope with noise, or they need the window kept shut despite the heat, or whatever it may be, respect what they are telling you and do as they ask. It can take a huge amount of effort to communicate your needs, and when someone chooses to disregard that it's like a slap in the face. Please, listen to what people say, believe them, and respect them. If you don't understand something, please ask rather than making assumptions. And try to treat them how you would want to be treated if the roles were reversed.

Which reminds me of something I wrote recently. Someone online asked what 'maintaining your dignity' means in the context of having carers; I wrote a response, and I saved it because I realised that I should send it to the care agency as a 'thank you' (which I still haven't done yet - I really must get round to that!). I'm going to just copy and paste it here as an example of how different things can be to what I described above.

What is dignity?

Hard to quantify, esp with porridge brain - but I guess being treated as a human, with respect for our feelings? There are many things that carers have to do for me that are just plain undignified, but the attitude of the carers and the way they carry out those tasks can make a huge difference to whether or not I feel that my dignity has been maintained.

I have managed to have 2 showers this year, which has been a huge achievement - and both have been with 1 particular carer. We're hoping I might manage another one in the next few weeks. The reasons I can cope with her giving me a shower are:

• she didn't rush me into making a decision to try it the first time; we talked about my concerns over several care visits, and she told me how she thought it could work, what she would do, and how she would help me
• she doesn't stand gawping at me; if there are bits I can manage myself once I'm sitting in the shower, she draws the curtain and leaves me to do it - but frequently asks how I'm doing and lets me know she's there if I need her
• she understands that I am extremely exhausted and wobbly by the end, so she gives me very clear instructions and plenty of time, helps me to think eg tells me how to walk from the shower to the loo, wraps me up warm then tells me to sit and rest for a few minutes before she dries me, etc.
• she also doesn't make me feel bad or try to push me when there are days when I am too ill to have even a wash in bed, she just respects what I'm saying and reassures me that it's ok, I can have a wash another day.

Similarly, with a different carer, I recently had to do a urine sample for a visiting doctor. I could not get my brain around how to do a sample, but the carer gave me step by step instructions, helped me to the commode, pulled my underwear down for me, helped me sit down - and then, when she was sure I was stable, safe and ok, she stood outside the room so that I could wee in peace. And she thought about the logistics; I panicked as I'd forgotten to think about loo roll, but she'd already got some ready for me.

Both of these carers have taken the time to understand my illness and how it affects me. They respect what I tell them about my illness, and how I want and need things done. They laugh with me if I do/say something daft, but they never initiate this; they follow my lead and laugh WITH me not AT me.

They've both had to help me 'down below' when I've been on my period - but have both acted as if it's a completely normal and non-disgusting thing to do.

I guess I feel safe, respected, and not humiliated by the experience. I feel that they are trying to do things the way they would want them done if our roles were reversed. (And I do realise how exceptionally fortunate I am to have such great carers.)


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