Wednesday, 10 July 2013
MSA, OCD, Anxiety and Exhaustion
It's 1.15am and I've just come back to bed after trying to settle Suzie again. Why do fears and anxieties always kick in with a vengeance just when we really need to be sleeping? Suzie and I both suffer from Obsessive Compulsive Disorder or OCD, although it affects us in different ways. Mine is dominated by security and safety, order and neatness, and numerical patterns (in particular, things having to be in even numbers). I frequently have to get up in the night to check that the cooker is turned off or that the doors are locked or the taps turned off properly. (Each time checking things a certain number of times and in a certain sequence, of course). Neatness and symmetry aren't choices I make just because it makes things look better.... They are compulsions that are impossible to resist. If you look in my kitchen cupboards you would see all of the tins and jars neatly lined up with their labels all facing the front, all the mugs with their handles facing the same way, all the cutlery neatly arranged in the drawer. On the table the place mats and coasters will always be straight, symmetrical and equidistance from each other and books on the shelf will be arranged in size order. For me to try and walk away leaving any these things in anything other than perfect order and neatness would produce the same level of anxiety as if someone was holding a knife to my throat. When Suzie and I have to go out it can take half an hour or more of repeatedly going back to check things. It would be pretty near impossible for me to go out and leave the house without someone with me to 'verify' that I had checked everything thoroughly.
Suzie's OCD is far more of the 'unwanted thoughts' type. For her, this is also much worse at night. Words and images come into her mind that are more dreadful and abhorrent than I can describe, and the distress caused by them is unbearable. She also has totally irrational fears about safety and becomes obsessed with vivid mental images of imagined dangers, no matter how unlikely or even non-existent these perceived dangers really are. She needs repeated and persistent gentle reassurance and comfort.
We have both found that these problems have become much worse since Suzie's MSA and cancer were diagnosed, and especially since her mobility has become so badly impaired. Suzie feels totally helpless and vulnerable, which exacerbates any anxiety related disorder. I feel powerless to alleviate her fears, drained by constantly battling my own anxiety and totally exhausted. Having started getting us both ready for bed at 10.30pm I lay here now, over three and a half hours later, wide awake, with my heart racing and my mind buzzing.
People keep telling me I need a break. But how do you get a break from this? How would having a paid carer to come in and get Suzie ready for bed at 9pm do anything to relieve what we're coping with right now? What kind of a 'break' would it give me to have to face the anxiety and ordeal of having to go out without Suzie? Only a couple of years ago, before she became ill, Suzie was flitting in and out all day every day and I was staying at home, often going from one week to the next without even leaving the house. In the last few months coping with all of the appointments, home visits and constant interaction with other people has been almost as difficult for me to deal with as the illness itself.
People ask me how I can lie in bed writing this Blog in the early hours of the morning when I'm so desperately exhausted. Maybe it's my way of trying to 'file away' all these thoughts and fears so that I can clear my mind and eventually turn off and get to sleep. Mind you, I will have to re-read this at least four times to make sure I haven't made any mistakes.
I'm just so glad that Suzie and I both share our faith in God. Sometimes there is no way to get through these long, exhausting hours other than prayer. Knowing that God is with us makes it possible to carry on.
One thing that we do both find relaxing is the occasional session of reflexology that we are given by a lovely therapist from Rowcroft Hospice. This is just one more aspect of their Palliative Care support, and it's very gratefully received. She will be coming here tomorrow afternoon for our next session.... And I might just fall asleep while she's doing it!!