Thought it was going to be a very quiet week but ended up a bit chaotic and hectic even though did some very enriching things. I suspect that those people lucky enough to live their lives without the added dimension of juggling life and health have little understanding of the time that is consumed with hospital appointments, taking medication, having infusions (not so common generally but common in my particular case), doing physio etc etc . Thursday was one of those days that rubbed it in a bit – morning taken up with pre-cataract surgery assessment. Everyone very good, efficient, helpful, explained everything…all going swimmingly..and then the blow from behind..we were discussing what I had to do post-op, the importance of eye drops being put in on schedule (I nodded and agreed), no heavy lifting (I laughed since I can’t lift anything heavy), no DIY (I laughed again), no gardening for 6 weeks (I stopped breathing temporarily). I enquired as to whether I had heard what had been said correctly and was asked whether that would be a problem. As anyone who knows me will immediately recognise this is akin to asking me not to breath or live for 6 weeks. Gardening, even though I am significantly limited in terms of what I can physically do, has unquestionably been vitally important to maintaining reasonably stable mental health while my physical health has stumbled from one crisis to another. Sitting at a potting bench and planting seeds or potting on is revitalising and mindful. I am assuming the no gardening rule is to prevent dirt and subsequent infection. I can feel a pair of bike goggles and some hilarious photos of me gardening wearing them coming on. Clearly I will run this past the consultant and let’s hope he realises the significance of his response to me. (And also let’s hope he approves the goggle option) Hopefully I will have a date in the next few weeks and at least get it over with. I’m a pretty gnarly hard woman when it comes to procedures but not looking forward to my eye being messed around with. Cataract assessment was followed by coffee with my lovely friend who was my nurse specialist when I was working and talking about her impending interview. I also met two ex consultant colleagues from Sheffield Childrens. Lovely. But then back over to Hallamshire to collect iv antifungals for chronic candida (fungal) infection of mouth …I currently need this about every 6-8 weeks – as a daily infusion for about 2 hours a day for a week. Had review by excellent and very nice Infectious Diseases (ID) consultant who was just back from maternity leave and had to catch up with the events of the past 15-18th months..bilateral ruptured achilles that took 51 weeks to heal, horrible arthritis unresponsive to conventional treatment, calcium in my tendons and bad shoulders, pain needing admission for 2 weeks iv pain relief, several admissions with infections/pneumonias, very low white count, fractured sacrum and several other stress fractures, torn rotator cuff tendon in left shoulder, cataracts, etc etc ….and then also needed to tell her about my miracle drug Anakinra that has transformed hands and massively increased my ability to function on a day to day basis..all very interesting no doubt but took a while 😃😃. Bumped into another colleague as I was heading back to our van and eventually arrived home about 5, no rest, no lunch and no gardening. Straight to bed, barely able to talk.
These days have to be endured if I am to optimise my health… I am pretty ruthless about weeding out appointments that are not actually necessary and/or useful. I nearly always take a list of issues to be discussed so that I can use the appointments I do have as efficiently as possible- even having worked as a health care professional myself for more than 20 years I can still find consultations intimidating, I don’t always remember what I want to discuss if I don’t take a list and I don’t always understand everything I am told. I liked the fact that the cataract nurse talked to me more or less as if I knew nothing about cataracts/cataract surgery – she didn’t assume I would know anything because of my medical background. But getting through that sort of day, (which is not as infrequent as I would like), even when everything has gone smoothly and well is like running a marathon for me or being run over by a steam roller, or even being run over by a steam roller after running a marathon. Exhaustion hardly starts to describe how I felt by the time I got home, flopped onto stairlift and collapsed straight into bed and asleep.
But of course tomorrow is always, inevitably, another day and the next day was a day to celebrate and remember, sun shining, lovely, lovely walk up to the field with Alicia, (my carer’s gorgeous daughter, very special friend of mine and exceptional young woman) and my 4 waggy, waggy dogs, Woody, Daisy, Bertie and Eddie.
Bit of gardening and then a crazy, fun afternoon with Alicia and Jackie making a mountain/mountain bike cake for Gray, Alicia’s boyfriend and part time inhabitant at Station House while his own house purchase gets sorted out. Inexperienced in the use of roll out fondant icing to make figures or objects, much hilarity resulted as heads fell off, bike frames collapsed, trees crumpled and the role of chocolate fingers and flakes in the construction of edible bike tracks and fences was debated. In spite of this we were proud of the final product given our rookie fondant model making skills. We even made sure that Gray’s left arm was dislocated and moustache drawn on. Safely hidden in the cellar overnight and presented to him this morning it was much appreciated, not only by Gray but by everyone who has been eating it.
Cake making was followed by exhaustion, bed and iv infusion again but life had been lived and celebrated. No complaints.
And then another day to be positive about today – great morning potting on with Jackie..beautiful plug plants (thanks to Kernock Plants) into bigger pots to grow on for next year. Such a wonderful thing to see how these tiny plants develop into sturdy plants ready to plant out and fight for their place amongst the other plants in the garden. And a few dwarf bean seeds planted as well. Still time to get crops from these. The dwarf French Beans are really productive, look pretty and are super easy to grow even if you have little space. I planted purple and yellow varieties (Amethyst & Goldukkat). They can be grown perfectly well in containers. Just need to be watered regularly. Fitted in 3 hours in bed and today’s infusion this afternoon before our lovely friends and their dog came bringing a full meal for the 4 of us. Bike ride for the boys, dog walk (with my fab 4WD off road wheelchair) for me and Sarah and then relaxed meal and bubbly on the sofa as I was too tired to move after watching last bit of Olympic cycling road race.
I have worked hard to learn to really celebrate the moment – not in a hedonistic way but in the sense of focussing on what is happening today, this afternoon, this hour. Alot alot of health shit has happened but that does really bring a sense of perspective to life which actually enriches our life and makes it easier to shrug off small problems…”don’t sweat the small stuff” . Unquestionably my mindfulness practice has been critical to my ability to focus on the now and avoid ruminating about the past or future. It is a vital part of my “toolkit” for coping with difficult times and one of the holistic therapies that I feel passionately should be much more widely available as part of NHS care for people with significant health problems both physical and mental. In fact, mindfulness based cognitive therapy (MBCT) is recommended as treatment for recurrent depression by NICE and MIND produced an excellent report that was used to inform the NICE decision. (Mindfulness_Report pdf from MIND ). I can only advocate wherever and whenever I can and hope that over time mindfulness based therapies become increasingly widely available and are offered routinely to patients who might benefit. The ability to minimise the “what ifs” of the future provides the freedom to enjoy the good days and accept the bad ones. Absolutely make the most of what you can do, don’t focus on what you can’t.
“So, stop pacing the aisles and counting the miles. Instead, climb more mountains, eat more ice cream, go barefoot more often, swim more rivers, watch more sunsets, laugh more and cry less. Life must be lived as we go along. The station will come soon enough.” From “The Station” by Robert Hastings TheStation pdf