One thing I have always tried to do for myself is to practice good ‘self care’. For me this means having regular small breaks throughout the year, as I work in a very stressful job. I currently work four days a week, Monday to Thursday and so have Fridays off. So, all I usually do – working around my husband’s shift work – is to take off either a Thursday or a Monday to make a longer weekend to make it worth going away.
I have recently applied for – and been granted after much negotiation – an extended period of leave for 3 months to go to the UK with my husband. We are taking the extra time as we want to maximise our time with family in the UK and do things that might be difficult in the future. The plans – or wishlist – include a week on a narrow boat and walking in the Yorkshire Dales. Plus, many other activities that require me to still have good mobility and a reasonable amount of fitness and energy. This will mean a significant part of the trip will be unpaid, which will be challenging, but if we are careful it will be achievable.
The thing I find now though, is at the moment I feel I have to tread carefully with requesting any other leave off, as I can’t afford to annoy my boss, by using up too much leave prior to the big UK trip. Perhaps I am worrying unnecessarily, but it is something on my mind, whenever I think of taking a few days off.
Apart from UK trips, I tend to take long weekends by adding an extra day or two on my usual three day weekend. I find this works better for me rather than taking off 1-2 weeks at a time. Regular short breaks have always been my preference. I know that if I don’t take these shorter breaks, I will find it difficult to manage my commitments to my work and will adversely affect my sense of wellbeing.
The other thing I had wanted to do, was to consider early retirement. My husband is two years older than me and in two years time will be eligible for a pension/superannuation. I had thought that it would be good if I could retire at 63 when he retires at 65. The thinking was that we would have more time together while I am still able enough for us to do things like walking in the hills, cycling and other activities. Up till about 12-18 months ago, if you had a partner on superannuation and you were close in age you could ‘piggy back’ on their superannuation and also receive a benefit from the government. Just my luck, this has now changed and not available. It would be too difficult for us to completely lose my income and not have assistance from the government. Therefore, it looks like I will have to work till I am 65.
I had a bit of a chat to a person from the agency that deals with these things, Work and Income or alternatively, the Ministry of Social Development. It is a slim possibility that if I need to stop working for health reasons, I may be able to get a type of Invalid’s (hate that word) or Sickness Benefit. It does concern me – not just for myself – but for others, that someone like me with a degenerative condition will have little option financially but to work perhaps longer than might be recommended. Especially in a stressful job, when we all know that with Parkinson’s that stress is not our friend. To me, the ultimate self-care is to recognise when we can no longer work effectively and/or recognise that our priorities are changing and we need to spend our time with spouse and family, rather than at work. For many this will not be possible and could cause significant financial hardship if they were to give up work. I’m not sure what the answer is, but for now it seems despite any deterioration of my condition I may have to work till at least 65. For me that is 4 more years of work, which feels like a long time.
So, I will continue to practice ‘self care’ in small ways by taking regular breaks. However, the ultimate self-care of retiring early to spend time with my husband may not be possible.
I only hope I can maintain my ability to work for at least that long and still have the time and energy and ability to do all the things we want to do together before Parkinson’s makes life too difficult!
My journey with Parkinsons 