After the setback occurred in my friend’s recovery (refer to blog post The Spiral of Setbacks in Recovery), it was back to the doctors. New medication was introduced into the large cocktail of medication already prescribed. Tests were prescribed. The waiting lists were long given the specialised nature of the tests and the number of people needing them.
Important Tangent – You can get moved up the waiting list for an NHS (UK) appointment if someone else cancels/rearranges their appointment. When you first visit the specialist consultant/doctor, make sure you find out who is responsible for arranging appointments. It is usually a secretary. Sometimes, more than one person is responsible for arranging appointments. Ask for their names and the right number to call. Call the NHS department every day and calmly explain your situation and that you would like to have your appointment brought forward if possible. By calling every day, they get to know you. So they are more likely to remember and call you when someone else cancels.
By calling nearly every day, the appointments were moved forward. The tests took place. I felt like I was living from test to test; going into each test hoping for answers to our questions; coming out with some answers but usually more questions. That was frustrating at times but I kept reminding myself that at least we got some answers and were learning a little more each time.
We were in limbo land. Dancing amongst uncertainty. Not knowing what the future held. Looking at what could happen – having to sell one’s home, change jobs, change expectations in a number of areas, changed dreams, etc. etc. Feeling that was awful. Yet reminding ourselves we still had life. And comparing ourselves to others’ situations and saying, ‘We are not that bad off. We are grateful. But we still wish this wasn’t happening.’
Life continued. Deciding what to eat for dinner every day. Getting on with things we had or wanted to do. Doing what we could. Still feeling like we were, and still are, in a bubble of hibernation. Access to the outside world is mainly virtual or doing a few local errands. We’ve seen some friends but there is a lot less social contact at the moment and that is noticeable. For me, I have a bit more access to the outside world through work. But we have our routine, which thankfully includes laughter.
One day we looked at one another and remarked that we were living well despite the uncertainty and unknown future. It was after a conversation about two other people we know, who put themselves into an uncertain situation, and although they know the situation will soon resolve itself (there is a definite end date to it), they have been experiencing a lot of stress over it. We did the comparison thing. We compared ourselves with their situation and said, ‘You know what, we are living well in this land of limbo. We wish we were not here, it’s not exactly a party. But we are here, and we’re doing ok. Some days aren’t great, but we have more good days than bad. That’s good enough.*
And so we continue dancing in the land of limbo.
*Another Tangent: I’m very interested in the nature of comparison within the context of long-term chronic conditions. A lot of literature, which I won’t reference here at this time, talks about how comparison with others is not good and unhelpful. And what these people are saying is true. But I have wondered if there are times when comparison can be helpful. In the case of long-term conditions, can it actually help the person cope with their situation by giving a different perspective? I’ve noticed that comparison tends to give people the perspective that their situation is not as bad as it could be and so they can manage. This is something for future research and blog posts.
© Copyright Barbara Babcock 2014