• Ruby Shoes - The Long Haul

    One of the things I find the most difficult to deal with this illness is the burden placed on those who love us. When I first met my husband, Richard over twenty years ago I was active, bright, vivacious and enjoyed life and socialising. We spent many years enjoying each others company and going out every weekend socialising or just watching cheesy horror films whilst getting rather inebriated. We had a lot of fun together. That active, bright and vivacious girl no longer exists. I no longer socialise, I am too ill to drink alcohol and I find watching films only something I can do on the rare occasion due to the concentration required and the stimulation overload. My husband, friend and lover has become my carer. My husband now on top of doing a full time demanding job has to do all the housework, a lot of the cooking (my carer does some of that) and worry about all the normal day to day things a couple normally share the burden of as well as comfort me when I am down, which is a lot. Of course, this does not make me feel good at all. I feel guilty, I sometimes try to force myself to think about doing something sociable, to make the effort but of course it is beyond me and when I realise that I get depressed and Richard has to comfort me again. He has called me a cry baby from time to time but I am very emotional with it all. I know GlamSticks is the only thing keeping me from the brink but he worries I do too much, I have no choice, without GlamSticks I couldn’t cope.

    I asked my husband to write something from the carers point of view and this is what he wrote.
    'Sharing your life and your home with someone who suffers from a chronic and debilitating illness like ME (which itself is very often compounded with other illnesses such as fibromyalgia) presents substantial challenges for you as a carer. To start with you have to recognise that the illness, as it stands today, has no known cure and it's symptoms can persist for a long time, perhaps even a lifetime, sometimes without getting worse but more often with an increase in the severity of the symptoms. You are, therefore, in 'for the long haul' when you are the carer for someone with ME.

    The care that is provided has to be as much about providing psychological and emotional support as about offering physical care. It is most likely that the sufferer with ME is having to adapt to many changes in their life, including the loss of mobility and independence in being able to choose what they do and when they do it, and simply getting out and about, doing shopping, and meeting up with friends. This change to their circumstances and the consequent isolation and embarrassment they can feel by being so dependent on others will have a huge emotional impact and as a carer you have to be there to provide support and comfort, and offer a positive perspective on what is, in reality, a bleak and difficult situation. But as the carer, it is your responsibility to maintain that positive outlook and provide a cheerful environment. It is important too to create a home environment which is peaceful, comforting and emotionally stable for the sufferer; after all, they are 'trapped' in that home environment and it would be profoundly negative for them to live in an environment which is emotionally volatile, or in any way distressing. Naturally, doing this as the carer can have consequences for the carer too – you may not always want to play the role of the cheerful, positive one; you may be tired and worn out yourself or experiencing your own stresses, perhaps with work or friends … but you know that you cannot show any of that but must present a calm and happy demeanour to the one you provide care for, so that their equilibrium is not disturbed.

    It can of course be very distressing to watch someone you love and care for deteriorate in their health and their ability to live a 'normal' life, as you watch, over the course of months and years, a change in their life options and consequently a change in your life options too. What used to be so simple and straightforward – doing the shopping together, going on holiday, or just going to the pub for a drink – all of these and more now become major logistical exercises to be planned well in advance and with the added worry that you may have to cancel the event anyway because the person you care for is not well enough to go out. Many of the things that you used to share together can now become impossible – it may just be too much for the ME sufferer to be able to travel far or go to a concert or theatre (where the noise, the lights and the crowd quickly overwhelm and distress the person you care for) or even to be able to go to a local pub for a quiet drink, all of these chances to relax together are now lost to the illness and you both must adapt to the reality of that situation and try to find other ways to relax together and which, most often, entail simply staying in the house and sitting quietly.

    As a carer you will, of course, also have to provide a lot of “household care” as well, such as doing the cooking, the cleaning, clothes washing, fetching things that the person needs, tidying up, sorting out the garden, and also dealing with the bills, utility companies and managing the house. If you also have to work full-time as well this can quickly feel overwhelming but you must constantly be aware of what the other person’s needs are and be prepared to stop what you’re doing and attend to them at a moment’s notice. They may feel embarrassed by this, because they are so dependent and hate to keep asking you to do things for them, but it’s vital that you maintain that calm and cheerful exterior and ensure that they feel okay about asking you to help them – after all, there is no-one else and they do need help.

    As a carer, and with these responsibilities, it is really important to ensure that you have some outlet for your own frustrations or stresses, and you allow yourself the opportunity to relax. It’s crucial that you give yourself time for yourself (where practicable and possible), and not to feel guilty if you do go out for an evening with other friends or simply spend some time on your own. It is a difficult challenge to provide round-the-clock care whilst also looking after commitments such as a full-time job and/or dealing with financial and household issues, and we all need the occasional chance to let go and relax for a while. Even if it as basic as something like going for a walk somewhere local, it’s an opportunity for you to put your other cares gently to one side for a little while and focus on other things.

    Ultimately, as a carer the important thing always to bear in mind, at the forefront of your every word and deed, is that this is 'care' that you are giving to someone you care for, and whilst the situation is not one that either of you would have chosen, every day still represents a chance to be together and for you to offer love and consideration to someone who needs it and wants it, and for you to express your love through the simple gestures in life, such as cooking a meal or even reaching out and holding onto and cherishing them. They may be ill but they are still the same person they have always been and will be.