There are four things that consume my time very rapidly: being sick, managing being sick, obtaining necessary support and with a disability and long-term health condition, everything just takes longer and progress is slower. It is more than a full-time job, it is a live-in 24 hours a day occupation that intrudes on every relationship, every project, every aspect of life.
1. Being sick takes time
I do my best to minimize the impact symptoms have on day to day living, but it is impossible to not devote a significant portion of time to both being unable to do much because of symptoms and management of symptoms.
Dislocating and subluxing joints can take up a lot of time. Usually the myriad of minor partial dislocations is more of a pain/fatigue issue, I don’t try and fix minor issues – they sort themselves out or get worse and then I fix them, but there is plenty of mid to serious subluxations that come up. Sometimes it takes a few seconds to relocate a joint, other times an hour and most of the time I need at least a few minutes afterwards to rest.
Asthma attacks take time, although I’ve gotten pretty good at carrying on with computer work even when I have a nebulizer turned on, but again, attacks are tiring and I need to take it easy for a while. Most other symptoms are pretty much the same, each takes a few minutes to get squared away and then force me to take it easy for a while afterwards. They’re unpredictable, daily and extremely tiring.
2. Managing long-term conditions takes time
I have attempted to minimize the amount of appointments I have, we usually aim to stick to one a week as the stress and fatigue they cause tends to take the whole day. Some are also more than an hour’s drive away. On top of appointments, there’s the administration involved in organizing appointments, prescriptions and treatments. The regular trip down to the doctor surgery to pick up prescriptions, the trip the next day to pick up medication from the pharmacy takes time as well. Sourcing and replacing appropriate equipment, like nebulizers, a wheelchair, braces and splints are quite time consuming and then there are the annual service appointment for all equipment, which works out as at least 1 appointment per month.
3. Obtaining adequate support takes time
The most time-consuming and stressful aspect is probably getting support. Applying for benefits and retaining them is a very stressful and quite time-consuming procedure. Applying for and retaining support from social services and/or the NHS usually only materialised through a lot of long phone calls, endless meetings and a circular process that sometimes feel never-ending.
Managing support often seems like a full-time job in and of itself. I currently employ three members of staff and I was and continue to be responsible for hiring, firing, training as well as seeing the legal side of having employees and working out schedules, job descriptions, duties and making sure that employees are doing what they are allowed to do, both legally and within my funding restrictions.
4. Things take longer to do
It generally takes me at least twice as long to do most things than expected. Brushing my teeth takes longer, putting on shoes takes longer, some days I don’t brush my hair because I ran out of time and if I shower and got dressed completely every day that is all I would be doing. Getting from one place to another takes time, transferring into and out of a wheelchair takes time and walking, when I walk, is slow and deliberate and requires a lot of concentration to pull off.
It seems most unfair that on top of the daily mountain of symptoms, with severe pain every minute of the day holding hands with bone wrenching fatigue being the most prominent features, there’s also all these other things layered on top and to get to any of the fun and good and positive parts of life, one must wade through the dark and dreary mucky mire of obstacles.
The million dollar question
I would love to have a job that I can be proud of. I want to raise my daughter well. I want to have time for relationships and family and have some financial security. I want to go on a holiday. It is hard to achieve these things when my day to day life is filled with the above, particularly when I have so few ‘good’ minutes in a day. I start to wonder if there is a way around that we haven’t tried. We refused CHC care a couple of years ago as we were spending more time dealing with related problems than we had carers in and we actually lightened Chris’ workload by refusing care and having him just provide all care himself. That turned out not to be a sustainable solution.
Living on a shoe string budget in a family of three, all with health/disability issues, how do we squeeze down the above to the smallest size possible and make room for other things? I don’t know. Maybe all we can really do is on a good day, throw it all out, unplug and go lounge in the garden.