What do you want to know? I genuinely want to know. I can tell you things but I do and then you worry. When you worry I then worry about you and if you’re ok. There are many things you don’t know because I don’t feel the need to share every part of my life and I need you to understand that that is my right, normal and not me being mysterious or difficult. When you know I am strugging you want to see me when sometimes, in fact often, I need solitude. I don’t need you to understand it but I do ask that you respect it. You also want to tell me what I should be doing. Can you understand that because I have been living with this for 20 years I might have some ideas about what helps? I have many many coping strategies but there will be times when the only thing I can do is to ride it out.
If I take time off work it is not a rash decision and it’s rarely one I make on my own. It’s not because of a few bad days. It’s because I’ve endured months of almost unbearable pain and because my mind and body can take no more. You may ask why I didn’t ask for help sooner. Almost always I have. I will have spoken to whoever my care coordinator is and we will have been working hard to keep me well and in work wherever possible. We will have considered my medication, possibly arranging an appointment to see one of the Consultants and considered an intervention by the crisis team. I don’t enjoy time off sick, it’s not relaxing, in fact it increases my anxiety that I am worthless as an employee so someone questioning if I should be off or saying that I should be in work does not help. When I am in work, you criticise me for working too many hours especially when I am not being paid for it. But when I am ill, I often spend the hours I am in the office staring at my screen, crying or having panic attacks so I make it up at home or in the office when everyone has left.
You may see days, weeks or months of what you think is inaction but just because you’re not seeing it doesn’t mean that I’m not working hard to regain some equilibrium. I may spend consecutive days at home, probably in your mind binge watching TV. That may be true at times but the reality is that I may not have woken until mid-afternoon because I only got to sleep at 7am. Why? Because when I went to bed I didn’t want to wake up the following day so I stayed awake. You can’t wake up unless you sleep so I don’t sleep. Or it may be that just the thought of going outside causes a panic attack. Or perhaps it may just be that I’m exhausted – mentally exhausted – and that anything other than lying on my bed is beyond me. At times I am so suicidal that any kind of action is beyond me and I’m taking the safest option. You may wonder how I can go out drinking with my friends when I am as ill as I say I am. Mostly because alcohol quietens the voice in my head for just a while and because I made a promise to myself that I won’t self destruct if I’ve had a drink. You probably don’t know these things but why would you? I don’t feel the need to go into detail about my symptoms and coping mechanisms but I would like you to look at my life and my illness from the viewpoint of “she’s doing all she can”. I know that things I do don’t always make sense or seem rational to others but they don’t need to. They only need to make sense to me.
I may not always know what helps but I am pretty good at knowing what doesn’t. I know that re-arranging my bookshelves helps – organising something does as does hours of playing sudoku on my phone. Getting the boiler serviced is important, believe me, I know that. Just as I know I really should look for new utility and broadband providers, however doing these things will make no positive impact on my mood – they will not take away the urgent desire to die.
Things will improve and change. I will reach the day when I submit meter readings again and put away the clothes dryer that has been in the same place for weeks and maybe even research home insurance but not right now.
I live my life at a different level to yours. Not better or worse, just different. And that’s ok. My life is unfortunately about survival most of the time and I have a pretty good track record at that. So celebrate that fact. I’ve had to adjust my expectations, have you?