Who Cares? - Victoria Bartle

As someone who lives with multiple chronic illnesses I have things that I struggle to do, things that use up a lot of energy and others that I can’t do as quickly as I used to. That means I need a little help. I have a cleaner to do the majority of the housework, I get my food shopping delivered and when I have flare ups of my conditions, I use carers to help with cooking, tidying and the bits of housework that need doing in between my cleaner’s visits. I don’t like having to ask people for help, but I am getting more used to it as it's been part of my life for about 5 years now and I know how rewarding it is for friends and family to be able to help me. There’s no cure or treatment for my conditions, so the people in my life can’t do anything to help, except if I ask them to do little jobs for me. My mum will always bring me food round when she comes to visit and I’ve asked friends to hang out washing, put shopping away and take the rubbish out if they’ve popped round and ask if I need anything done. It helps me out, but it also helps them. I know this because they tell me, but also because I feel like that as well. Due to my circumstances I know lots of people who live with similar conditions to mine. Most of my friends have some kind of chronic illness (because having friends who understand our lives is important to building relationships) and, when I see them, I like to be able to take something that they need, or do little jobs around the house if I am feeling ‘well’ and can manage them. It makes me feel useful, shows them that I care and also stops them having to wear themselves out trying to do it themselves.

I’m currently supporting a friend who has multiple health problems, both physical and mental, and we have laughingly been calling me her carer for about a year now, since she started a new job and needed to go to London every few months for meetings. Her anxiety is such that she really struggles with new things, people and places. That makes anything out of her usual routine very scary and this often sends her into spirals of panic so trying to travel to London on the train, organise assistance, get a taxi to the hotel, deal with any issues there then go to meetings for 2 days and do it all again to get home was just too much for her. I said I’d go to help. I can’t walk very far and have little strength and energy, I need assistance in the train station and an accessible hotel room so it’s amuses us to say that I’m her carer, when I actually need more physical assistance than she does. This sort of situation is common and something that disabled people and carers can totally understand, but the majority of the general public simply can’t seem to get their heads around it. The situation is made even more confusing for them as we both have invisible conditions, so to the world at large we “look fine”. Having to explain our requirements to hotels and train assistance is exhausting and stressful as I have to go into lots of detail with them and justify why we need it. There is no record kept of travellers’ needs, so we have to do this every time we travel. I can only manage this in small bouts so it’s a good job she only has to go to London 3 times a year!

Over the past few months, her health has been getting worse and we haven’t been able to meet up for lunch or a coffee as we usually would. I’ve been going over to her house about once a week to drop off bits of shopping, do some odd jobs and just be there to have a conversation as she’s really struggling to keep her spirits up. Helping her makes me feel good. I like being useful and she says that it’s helping to keep her sane having me go round.

Since lockdown I’ve still been going to see her about once a week, however now, while I’m in her house, I am getting very anxious myself. I’m hyper aware of touching things and then touching my face. I’m washing my hands and using hand sanitiser every few minutes but it still feels scary. When I get home (after a stressful drive worrying about being stopped by the police and having to explain and justify why I’m out of the house) I strip all my clothes off, put them in the wash and have a shower (an idea I got from my Dad who is a Paramedic. This is his routine when he gets home from work). I also clean all of the touch points in my house, the door handles, light switches and benches in case I touched anything and forgot about it. I make sure my bags are put away then sanitise my phone and all of my remote controls (I’ve no idea why them). I don’t know if this is all necessary, but doing it makes me feel safer, so even if it’s just for my mental health and it’s not really protecting me from contracting the virus then I’m going to keep doing it, but there is a fine line between being careful and becoming obsessive which I’m trying to keep an eye on so I don’t spiral out of control.

All of this extra activity is very tiring for me and I have to make sure I’m pacing myself around it. Usually if I go out I don’t have to sanitise myself and the house afterwards, which means that, at the minute, I have to sacrifice doing other things like cooking a meal, washing my hair (which I usually get help from a hairdresser with because it’s difficult for me, so this is an added burden too) or putting my shopping away until I’ve had a few days to rest.

I asked a neighbour to come over and help me put my shopping away today. She had told me a few days ago that she was struggling mentally and needed someone to talk to, and after last week’s delivery it took me two days to recover. I figured some socially distanced help would do us both good and it really did! But now I’m feeling a bit guilty, because I’m not sure if this counts as care? Is it essential, or should I have just struggled with it myself and had a chat to her on the phone? The overwhelming feelings I’m having when I go to help my friend or ask someone to help me are guilt and fear. I’m afraid of not doing the right thing. Am I taking enough precautions? Am I being safe and not putting any of us in danger of catching Covid-19? Am I breaking the rules? Will the police stop me as I’m driving? What will I say to them? My friend and I haven’t got a formal care arrangement in place so will they fine me, or will they speak to us both and accept that it’s a legitimate situation? It’s all very confusing and stressful.

The guilt I’m feeling is mainly around how my friend is feeling about my behaviour. Is it upsetting her that I’m constantly cleaning myself and her things? Is she offended by my waving her away and asking her to keep her distance if I feel she’s getting a little too close, or she tries to pass me something? I don’t want to upset her and add to her stress, but is that what my behaviour is doing? It’s an awful situation and I just want to do the right thing. I’m explaining why I’m doing it and reassuring her that I’m not judging her cleanliness, it’s just for my own piece of mind. I feel guilty for even going over to see her. It feels as if I’m breaking the rules a little. I make sure I’m only going when I have something that she needs or if she needs something doing urgently then I can justify it to myself, but then I also feel guilty for not helping her more. It’s a vicious circle of fear and guilt that I’m sure a lot of us are feeling at the minute.

I’m also finding myself being an emotional support to lots of friends at the minute. We are all struggling with the lockdown, isolation and general fear and anxiety over the current situation and the risk to us all, however, lots of us are at higher risk of serious consequences if we get the virus which is terrifying. Lots of my friends have had to stop regular treatments or investigations due to the NHS cancelling regular consultant appointments, testing and operations which is leading to increased fear and anxiety in the disabled and chronically ill communities. The only thing I’ve had to put on hold is my physio appointment, but I can do the exercises at home and I’m actually managing to pace more effectively, so I’m actually finding my pain and fatigue is a little better at the moment. I know that I’m one of the lucky ones. I’ve had calls from friends who are waiting on investigative tests, diagnosis, treatment adjustments and even operations which aren’t considered lifesaving, but will improve their daily lives and, ultimately, put their minds at ease. So, alongside the pandemic they’ve also got to accept the fact that their overall and long term health is being negatively affected by delays in treatments due to the NHS having to prioritise treating people with COVID-19. This is totally understandable but it is distressing for those of us with permanent health issues, who know that we’re getting worse due to the pandemic without catching the virus.

I’m having at least 1 call or FaceTime chat everyday trying to listen to, support and just be there for my friends and I love doing it, but it’s also draining for me which is why I don’t do more than 1 or 2 a day. Somedays I have to say no to a call and I feel dreadful. What if that person really needs me right then? What if things have got too much for them and they do something dangerous? If I’m feeling tired or like I can’t take any more for the day, I’ll ask if they need to speak to me now, or if it can wait. I know I need to protect my own health as well as supporting those around me so I’ve come to terms with the fact that I have to say no sometimes. I have to take time for myself and work out my own fears and frustrations as well. So I am trying, but it is really hard. I was told by a counsellor, years ago, that “you can’t pour from an empty jug”. We have to look after ourselves first before we can help others, so make sure you’re filling up your jug before you pour it out for other people. They need you to keep going and you can only do that If you look after yourself, too.

Victoria Bartle is an expert by experience. A blogger and advocate, Victoria lives with multiple health conditions and receives support from friends, family and paid assistants. Her blog on CACHEAlumni.org.uk is a great way to gain insight into the views of a service user and consider care from different perspectives and is written with the insight Victoria has gained in her time working as an advisor and team manager in welfare to work. You can find out more about Victoria, her experiences and her other qualifications in her introductory post.