Tuesday, March 16, 2021

A Year Under Covid Rule(s)

 

Storm Covid 2020-21

Life pre-2020

In early 2019, I celebrated thirty years as a liver transplantee and the other things which had developed during that time (ITP and IBD) weren’t bothering me at all because they were in remission. Just the usual agro women commonly have to deal with around the 50 year mark. I felt well in myself and times. Unhappy memories of the lowest points of my life when I was very unwell were still vivid but becoming increasingly distant. The family were all well, with parents and parents-in-law all living into their 80s. The  convergence of key anniversaries and life milestones on both sides of the family over three generations set my head spinning. The diary for 2020-21 included our Silver Wedding Anniversary, three round number ; and a nephew turning 18, sitting his A’levels and going to university. I couldn’t believe the year 2000, a big round number far off in my future as a childhood was now 20 years in the past.  2020 was an interesting round number too, rolling off the tongue even better than Two-Thousandtoo and a leap year. When it began, I was apprehensive about the future and always had been wary at the turning of a decade. I worried the biggies such as the climate crisis and I didn’t like much of the politics prevailing during the 2010s. As usual at the beginning of a new year,  thoughts turned to planning holidays trips away around Britain and France, hoping they didn’t clash with any of the family milestones. With the mortgage just paid off, we had more money available and wanted to make the most of that before my other half retired.

Notwithstanding past health-related lows affecting myself and close family members, I considered myself lucky and knew there was always someone somewhere having a much rougher time of it, so in many ways I had it cushy. For the past ten years, I’d lived on the Hampshire coast. I regularly sketched in the area around the Hamble River, watching lots of yachts and shipping of various sizes in Southampton Water and the Solent. Views of the IOW and even the industrial landscape of Fawley Refinery and the disused power station was interesting to draw. Among my prominent memories of 2019 was the roof being blown off the latter as demolition began. The chimney was visible for miles around and served as a prominent navigation mark on the Solent. I liked the area as well for its relatively good bus and train links which I used regularly to travel further along the coast to places I’d been long fond of such as the Arun valley. Occasion trips to London and the Thames where my father had long drawn inspiration for his painting and printmaking. I enjoyed going to art galleries and exhibitions, including those my father was involved in.

I’d always loved getting out and about, from childhood holidays onwards. I don’t think there’d been a year when I hadn’t got away somewhere at all. I considered the health and freedom to get out and about an important quality of life. I felt for anyone yearning for it but unable to do so for various repressive / oppressive reasons. Most of our travelling was around Britain, including near annual trips almost to the other end of it to northern Scotland from Honeymoon onwards. There we went walking and my other half had taken part in various cycling challenges. At the beginning of 2020 he was signed up once again for the Etape Loch Ness.

Simple pleasures included other than walking and cycling included reading, browsing bookshops, art shops and coffee stops. My self-confidence in my artwork ebbed and flowed depending on how well the last exhibition I’d been involved in had gone and whether I’d sold anything. Potentially there were about six exhibitions in my area happening in 2020 where I either knew I had work in or wanted to try for.

I try to expect the unexpected I’d never been good with disappointments and changes of plan, remembering childhood disappointments and went through spells of finding it difficult to look forward to things in case they had to be cancelled.

2020 started off pretty normally with full expectations of that quiet life continuing, even as science programmes on BBC Radio 4 mentioned some new virus in China to which no one was immune, no vaccine or other treatment; very contagious and could be fatal. Later in January,  news of tens of millions of people there in several large cities having their freedoms of movement and gathering severely restricted (lockdown). By the end of the month, the first confirmed case in the UK and it was likely on the near Continent by late December 2019. In February it got bad in Italy and concern mounted in the UK, but for a time the Westminster government (PM Boris Johnson) didn’t take it seriously. I coined the term Panic-Demic as a catch-all for the growing nervousness and feeling of a wave of infection, anxiety and panic gathering pace and strength, getting ever closer to home.

During the first week of March the Italian government imposed a strict national lockdown which involved road blocks, as the death toll and strain on their health service mounted. I hoped it wouldn’t happen here and although I had a basic idea of the science (eg exponential spread) I hoped / couldn’t believe anything like it could happen here, in Britain. Somehow we’d whether the storm. In the second week of March, the World Health Organisation declared Covid-19 to a pandemic. It was the third week of March that the Covid wave hit home. What followed was the biggest crisis in certainly the western world since WW2 and one of the toughest periods of my life. Certainly when I while I was fit and well physically and comparable with close bereavements. I hadn’t lived through anything else that was so pervasive and took over absolutely everything. As it all kicked off in that third week of March, I could scarcely believe it was happening and happening here.  What’s more the sinking feeling that we were at the beginning of a long haul that could go on for a year or more. Schools and universities were told to close, as were cafes, pubs, musuems and galleries. On the penultimate Sunday in March we went out for a walk from East Lavant onto the South Downs but the relief we got from that was shattered when we got back home to news trickling through that swathes of people were apparently in denial at the seriousness of the situation and the only way to get the outbreak under control being a lockdown. That was announced the following day. Everything we’d planned / aspired to for the spring and early summer was cancelled or postponed indefinitely. The art stuff I didn’t entirely mind as the diary emptied of all the associated flappery and the rush of things that needed doing for Warsash Art Group after their March AGM, where I was Secretary.

Three particularly low / tough points: the first lockdown;  August-September when I’d hoped to relax a bit but lots of hassle; and  worried about what was clearly a second wave building for the autumn and winter. Knowing a second lockdown was very likely, I couldn’t face going through another round or worse of what happened during the first. My mood picked up in October and November despite the renewed lockdown. The news was looking more hopeful then than it had done for months (vaccines). The third low (ongoing  at turn of the year came in mid-December, when news of a new, more infectious variant of the virus spreading rapidly and worst of all in SE England. Within a week of Christmas, two government announcements about renewed, tough restrictions. We saw my parents on Christmas Day but come Boxing Day we were in back in lockdown, as was much of the rest of the UK.

The big thing was we and all those close to us stayed safe (drafting in mid-December I hope I can still say that come end of year), not catching the virus and doing everything realistically possible not to. The hardest hitters came with the associated restrictions of freedom of movement / travel and meeting up. Especially so during the spring lockdown. My hardest hitters particularly then, but not only then were:

·        Being on an official Watch List / shielding / “Extremely Vulnerable” – I have banged on about this enough through the year so I won’t repeat it all here. Overall, it squashed my spirit, upset me in lots of way and and had a huge impact on my mental health and I how I saw myself. We were both ultra-cautious as I had every reason to believe they (medics / health advisors) were right. I was on immunosuppressants and I was under no illusions about Covid’s immediate danger or lasting effects. Though I hadn’t caught everything going around there had been bugs that got me badly. Most recently the flu’ like episode in 2016. What got me was the expectation at the beginning of the first lockdown not to leave the house under any circumstances twelve weeks; even socially distance within the house. Also the repeated unsettling / nagging communications by text, post, phone calles. It wasn’t law but the wording of the long letter and text that arrived during the last week of March “you are strongly advised” was enough to have me wrestling with my conscious not just through to June when, after ten weeks I was officially “allowed out” but beyond that. Beyond that because of the deeper feelings and fears it provoked. I thought very hard about it but the house arrest aspect was over-kill for me and I felt strongly that everyone fit enough to get outside should do. For the first time since my TP over 30 years ago, I went against medical advice. Though I stuck to everything else (eg staying out of physical shops through to August and again in lockdown 2), I still had a guilty conscience. Also, being told what to do once about something this serious was enough. I didn’t need to keep on being told and reminded. It set off my near-lifelong dreads of the phone going and post arriving. Things I thought I’d gotten under control but were just bubbling under. I felt more constrained by other having other people around me (older parents and My Cycling Man) worrying and / or changing their behaviour. I also felt embarrassed at having other people (NHS volunteers) delivering my repeat prescriptions and for a time during the first lockdown receiving food boxes. This in full view of the neighbours, when I looked and felt physically well. I say Watch List as, unfounded and as over-reactive this may seem, I had a real sense of being under surveillance.

·        Extra household admin / stress, mainly to do with grocery shopping. For much of the year I was either advised against going shopping, including groceries, and / or didn’t want to. That meant I had to plan ahead very carefully grocery shopping almost exclusively online so we didn’t have to top it up / go without. That took lots of time: particularly as everything kicked off in March, and again in November, December, into January 2021 as it all cranked up again during the run up to Christmas and the full repercussions of Brexit. In March the supermarket shelves emptied of some items (loo rolls most notably) as people stockpiled / were panicked. What totally threw me because I hadn’t expected it was grocery deliveries rolling over. I’d never enjoyed pushing a trolley around supermarkets, dodging other people all the time, so ince our BMC days I had done the bulk of the weekly grocery shop online and got it delivered. Until now it had worked well and I’d gotten settled into a routine. I hadn’t known, though that the proportion of people doing the same was so low (about 7%). No wonder then it all collapsed amid the panic buying. The supermarkets fixed it by bringing in lots of extra capacity and, being on the watch list I was able to get priority slots; but this took several weeks. In that time, I was unsettled and constantly having to think ahead to the next lot of shopping, uncertain I’d be able to get it delivered. Part of the fix also came from a government website where people on the watch list could register for extra support. I said initially no, we couldn’t get food in. That prompted the food boxes. During that first disrupted month, they made a big difference. The embarrassment came later in April, by which time I had no problem getting deliveries, but I couldn’t stop the boxes arriving. As Dad – also on the watch list – put it, “Sorcerer’s Apprentice”. It took several attempts to re-register on the government site to say all OK now.

·        At no point this year, could I fully relax or switch off. Isolated but not blissful isolation from the news. Like it not couldn’t switch off from the news /media or other people’s worries / difficulties, general uncertainty in a constantly changing situation / staying at home not an art retreat – domestic stresses. Especially so when everything kicked off in March and around the Christmas period. The news was usually grim, unsettling and depressing but I still had to engage with it like it or not. If I didn’t, I’d only hear it from My Cycling Man or Mum (usually) or overhear snippets while out. Had to keep engaged as in a constantly evolving situation, the law and guidelines about social distancing / what was allowed / inadvisable or not constantly changed. Even though the gov.uk site where all this was comprehensive, it wasn’t always clear / not always clear to everyone. A prime example was  conflicting advice for a time about meeting up with family over Christmas.

·        My Cycling Man had his own stresses (see below) but as I I saw it, the bulk of the domestic stress / chores were falling on me, largely because of the groceries. From mid-March onwards he began working at home: full time through to August then usually two or three days a week. DSTL were very supportive and, unlike lots of other people / businesses, this was secure and on full pay. A big backlog of classified work requiring time in the office to connect to the secret network built up through the summer. Otherwise he was able to work at home with all the computer equipment he needed. Regular tele-conferences in place of meetings here there and everywhere. Because he wasn’t going to work or anywhere in the car in the first lockdown, he had to get someone out to sort it when the battery ran flat. Him being at home 24/7 was something I knew I need to adjust to by the time he fully retired, but he had no plans to do for over a year. It was brought up with a jolt then, when that was unexpectedly brought forward. It was mainly little things like taking over hoovering around him and not having lots of stuff debording all over upstairs out of the Artroom I full painting or printing swing. Not that there were many days this year when I was in the mood for that. But we adapted. My Cycling Man’s biggest stress was the real possibility that he’d have to face the loss of a parent for the second time in a year. On 4th April, his Dad had a fall at home, broke his leg and had other complications. That Saturday night was a long one as he sat up awaiting news. Mike made it through, but still another scare a few days later. He was not able to do much from here and because of lockdown, hospital visits weren’t allowed. He kept in touch with Scott and Julie online and Julie / Bryan were able to organise help at home for Mike when he came home during the third week of April. His recovery was long, with blips and dips. He had to wear a rigid collar for a couple of months while his neck heeled. Was unwell again in September and because he wasn’t very mobile he really was isolated / stuck at home. We saw him at 39NR on our way home from Wales in October, just after his 85th birthday.

·        Missing places (more than people) – the warm dry weather in the spring and early summer enabled sitting in the garden which made a big difference, at least while not to much other noise around the neighbourhood. In defiance of watch-list guidelines, I still walked to Warsash and Hill Head. Initially I wasn’t too upset as I had plenty of artwork / ideas for to do at home. I also enjoyed the fun / light-hearted ideas for sketching suggested on one of the Facebook sketching groups I followed. One day in April, I sat outside sketching my feet, which took me into a happy reverie about a past trip north to the Eden valley. Come May, though, I was missing my usual freedoms to get out and about and wondered if we’d ever get them back. I had to stop doing artwork based on maps then because that was normally the time of year we went on holiday and if I’d followed the watch-list guidelines to the letter, I wouldn’t have been able to leave the house. Even when lockdown restrictions gradually lifted and travel guidelines were relaxed, I was still dependent on My Cycling Man to anywhere I couldn’t walk to, because using public transport was either discouraged / inadvisable. In August and September I took a few short (no more than 20 minutes each) train journeys between Cosham and Southampton; two of those to / from QA. All masked up as required by then, but I didn’t feel going any further or during the second wave. As we found in other areas, not everyone was as cautious / conscientious / compliant as we were when it came to masking up or physical distancing. In fact some people, mainly younger people and mainly mainly men were in outright denial and couldn’t care less. Particularly through the later spring and summer everywhere it was very busy everywhere out and about, especially beaches. In the longer daylight of the spring and summer we got out early in the morning, very early sometimes. That meant we could park and have some quieter time, but it still got busier earlier than usual.  To stay 2m apart had to constantly look out for other people. When I was in the mood for it, I treated it as gaming. When I wasn’t it was wearing and frustrating. As the days drew in the autumn, we lost that early morning period. Certainly around the shortest day in December, it was constraining as by then the mud season was well underway as well and the weather was unsettled.

All that said, though, we got out as much as we could when we could, in various and new ways.

August-Septmeber low

Just as I was hoping to relax a bit, I found myself having to deal with a lot of  medical-related admin / hassle and generally inconvenient weather. Though there were wasn’t a prolonged constant heatwave in the summer, the warmth started early, in April / over Easter, followed by some very hot days in June and July and a particularly straining heatwave in August which went on for about a week, followed by inconveniently timed rain later in August. Time and again, I saw other people’s postings via social media with their holiday snaps and feared we’d miss the boat / have to cancel again. I felt demoralised disappointed about my art / lost my mojo.

One particularly low day was the penultimate Sunday in August. I went for a walk in the Farley Mount area while My Cycling Man went cycling. It didn’t relieve my mood or depression. I was weary of social distancing; having to constantly stay alert to other people; and it being so busy everywhere out and about; the thought of the daylight shortening as we moved into the autumn and curtailing those early starts we’d made to escape / distance from the worst of the busyness; and missing getting around further afield independently of My Cycling Man on the train. In August and September I made a few short journeys (under 20 minutes) on the train between Southampton and Cosham but didn’t feel safe or confident about going further, eg along the West Sussex coast. Even the local journeys I didn’t immediately mention them to My Cycling Man as I didn’t wanting him worrying / putting any doubt in my mind. Nearing the bottom of the hill into King’s Somborne on that damp Sunday, I went into a little chapel (no one else in there). It was their display about WW1 that did it, with mention of several young men killed in action in their early 20s or younger. I sat on the pews in floods of tears, ashamed of my self-centred angst about trains and inconvenient weather.

 

Art – all the exhibitions I’d hoped to take part in and everything planned by art groups cancelled from March onwards, as were our holiday plans. It wasn’t all bad. I quite liked the feeling of the diary emptying in the spring, at what’s usually a busy time of year. I didn’t miss the flappery associated with taking / collecting pictures to / from exhibitions, crowded art group meetings or dispatching paper copies of newsletters. As WAG’s Secretary, I liked everything moving online and going completely paperless. When we weren’t in lockdown, I sketched hard along our local coast, combining it with a walk or cycle ride. When we were, various ideas suggested on the sketching groups followed on Facebook were light hearted relief. One Friday in April, I was sat in the garden sketching my feet.  In the Artroom, though I didn’t feel I got much productive work done. At the very beginning, the thought of having lots of time at home to knuckle down to all those ideas from the previous winter and before/ projects put off. By May, though that wore off and that was when I serious began missing places. As – yet again – spring was early and warm and sunny, I found it too warm and bright working in the Artroom. That’s been a perennial problem since we moved here, but on top of it now I was so anxious and distressed by everything going on that I found it difficult to focus. A general  sense of info’ overload. Some artists relished in the extra time / homebased art retreat but it didn’t feel like that to me. My late summer low point deepened when I didn’t get anything accepted for the (now virtual) Southampton open exhibition even though the theme of journeys and the sea (marking the 400th Anniversary of the Mayflower) had been one I thought I could run with.

 

Changes of mind / realisations better understand:

Some permanent, some temporary, some serious, some trivial.

Lockdowns unavoidable, unfortunately because couldn’t rely of everyone taking it seriously / sticking to the rules. See notes during the year about lots of people (mostly the over-50s) being scared, following the rules and more; but some (young men notably) in denial, thinking it uncool to stick with the rules, eg not wearing facemasks. This not helped by the Dominic Cummings Barnard Castle incident in LD1.

Populism, including Brexit, climate change denial – if the truth / trusted news is not what people want to hear and they hear someone else (eg Trump) saying it’s not a problem, some people might feel easier and believe outright lies. On Brexit / British politics, my views still stand but no longer carde about how people voted. Cared much more about how they were behaving now.

Cars more sensible than public transport – temporary but ongoing until further notice:  a total one-eighty because public transport didn’t feel safe. No provision for social distancing and no natural ventilation.

Living in the countryside tempting, especially with the above advantage that attracted me to live where we do, being put on hold.

Christmas decorations / push in November – decorations began appearing in people’s gardens by mid-November. Instead of the usual problems, I enjoyed them. They cheered people up. I invested in some myself, but expecting to be able to  put  up our indoor tree in the garden without it falling over was unrealistic. It fell over twice, including on Xmas when that distant but still vivid memory of me sending the tree in 19 Woodbourne crashing down converged with the downer of 2020.

 

There were  upsides / if not consolations

Saved Money

All agreed 2020 the toughest year in peacetime / since WWII but if a pandemic had to happen, better now than any earlier:  not only medical advances / knowledge but also fast internet connectivity.

Places further afield missed / harder to get to but made up getting out in new ways closer to home, including cycling. With My Cycling Man’s help with new tyres etc, got my bicycle out of the garage and rode it for the first time in 16 years (BMC days). First ride was to Hill Head and Lee-on-the-Solent early morning Saturday 13th June. I rode it along our local coast between Gosport and Southampton and across the tidal Test one day in late July to Eling. Also to some the series of outdoor sketching days organised for Fareham Art Group by Tina (also now a regular sketching in Warsash on Monday mornings) in August and September. Cycling was more popular than ever from the first lockdown onwards when lots of people took to their bikes on the quieter roads and or (like My Cycling Man) out for exercise. Most of my rides were to places I’d have previously travelled at least one way by bus or train. Usually I’d head out early in the morning (well before 9.00am, if not well before 8.00am on the light summer mornings). It gave me back some of the travel independence I’d lost and widened the range of places I could get to. As the days drew in and the traffic ramped up again in the autumn (very much due to schools reopening after a six month closure) it was harder but during the last two weekends of November, I tried out My Cycling Man’s 20 year old mountain bike (fitted by him with tyres to best handle a mix of road and moderate off-road) to Lee, Stokes Bay and Wickham. Also found a walking route to Wickham. Wickham, in the lower Meon Valley was one of those places relatively close by I hadn’t visited until now. During the anxious, dark days of December, I looked forward to riding again in 2021, once the weather improves. I think I also walked further than I ever did this year on a regular basis. Again partly in place of public transport, meaning trips to say Lee, previously about 7.5 miles and bus back, were now 15 mile circulars. I found all sorts of new quieter ways through our area by foot and bicycle: mainly paths through residential areas which were easier for social distancing and meant I didn’t have to walk along the busier roads so much. Most locally, I finally got round to using the foot / cycleway which goes under the link road between M27 J9 and our local A27, after 11 years of living here. Used it as a way to Titchfield, Titchfield Abbey and north towards Wickham. Also various ways through Fareham avoiding the town centre. Saw more of the Meon Valley, including the Meon Valley Railway Trail. My Cycling Man was very keen to get cycling. Usually putting the bike in the car and riding out from somewhere like East Meon. I often came with him and did a walk, eg Butser or Old Winchester Hill from East Meon. He took some annual leave to cycle during the week during the spring and summer. That enabled me to get out to the South Downs which I missed during the first LD. We also did some walks together in the South Downs area or Downs west of Winchester. On our anniversary, 15th June, an early morning walk on Farley Mount towards the River Test. Early in June he dropped me off in Winchester on the way to Farley Mount and I enjoyed wandering around the city centre while it was quiet. We also walked from East Lavant, Buriton, Petersfield, regularly. A couple of walks in August and September in the Arundel / Amberley area. On the September one, we came upon My Cycling Man’s colleague and my former Farnham Art Society colleague Chris Hall on Rackham Hill, doing a ride along the South Downs Way from Cocking.

Lots going on in space, even if events on Earth not good

Unusual dimming of Betelgeuse later in 2019 continued into 2020. When I looked up at Orion in early March it was still fainter than Pollux. It’s variable, but usually somewhere between Aldeberan and Procyon. It returned to normal brightness later in the spring. Speculation it was about to go supernova, but put down in the end to huge starspots.

The night and early morning skies were busy with planets. Watched Venus in the evening sky in the spring. Then, after inferior conjunction in early June, it reappeared in the morning in the early summer. News of phosphine (PH3) in the atmosphere which got people wondering if there might be life in the clouds in what it is the hottest planet in the Solar System, devastated by a runway greenhouse effect. There was a close opposition of Mars in October, when it was brighter than Jupiter. The closest opposition since 2003. Jupiter and Saturn meanwhile were lower down in the sky in the SW. Being low down, I had to go up the hill to the playground area at the top of the hill to see them. In December, they were in close conjunction. Only the conjunction of these two planets in my lifetime (the first in 1980 when I was 12, the second in 2000). This was the closest GC for nearly 400 years (1623), 21st December. Also the Winter Solstice. That Monday was cloudy and wet, but I saw them on the Sunday night when they were a third of Moon width apart. Also that Sunday, watched a live stream from a telescope at Exeter University; both planets in the same field of view, with all of Jupiter’s four Galilean moons and Saturn’s Titan also visible. Also interesting developments with Space X, with a launch to the ISS in May. All a very welcome diversion from the grim news on Earth.

Family

I saw Mum and Dad during the middle of February, staying overnight at 37CA and travelling to London on the train from Aldershot for my Kings appointment (where a Dr. Shanaker said looking at my good results no one would know I’d ever had a transplant or had ever had liver issues). On the Friday morning, viewed a vivid sunrise from their lounge window. Typical of Red sky in the morning…warning, Storm Dennis hit the next weekend and raised the Severn and Wye.

The next time I saw my parents at 37CA was on the second Saturday in July. By then, people were allowed to meet family who didn’t live with them. It was a fine sunny day. Mum did lunch and we looked at art /sketchbooks in the garden.

After putting off due to the heatwave, we saw them twice in August. On the 29th, an all-Bryce get-together at 37CA, squeezed in just before Tom headed off to University and William back to school (and while these sort of gatherings were still legal). When the Cradley folk and their dog arrived, I barely recognised the boys. Like My Cycling Man, they’d both let their hair grow during lockdown and after. William’s was shoulder length and Tom had a beard big mat of ginger hair with a thick couldn’t see out fringe. Tom turned 18 on 26th July. With A’levels cancelled, they went on predicted grades from mock exams the year before. He had to query it amongst the associated shambles but he got four straight A*s. In September he headed off to his hall in the Clifton area of Bristol just before taking up his place on the Bristol University Physics course.

On My Cycling Man’s side we saw Scott and Beth in August as they made a brief visit during a daytrip to the area. They’d got engaged last year and had their fingers crossed for an as yet unnamed wedding date in 2021.

Michelle and Andrew Bowdery had a scaled down church wedding in September.

Mike’s recovery from his April fall / complications was a long haul with blips but when we called in our way home from Wales in October, he was much / looking much better.

We got away eventually – a sense in September of people heading off on holiday while they still could ahead of renewed lockdown to contain the second wave which was building before schools and universities went back and accelerated it. I feared we’d miss the boat. A growing number of areas in England and Wales had local lockdowns and restrictions differed either side of the Welsh border, the Welsh Assembly generally being stricter than Boris’s lot at Westminster. By the beginning of October, the whole of south Wales from the Severn Bridge (M4 / Prince of Wales Bridge) and Llanelli was under stay-at-home lockdown. Ceredigion where we had our first week wasn’t. We headed off on a very wet soggy Saturday (Storm Alex, 3rd October), the M4 west of the Bridge quieter than ever, with bi-lingual Local Covid Rules Apply illuminated road signs. We wondered how far through the fortnight we’d get before the net closed in on us. During the first week particularly I couldn’t relax / switch off to the rest of the world as usual – I left My Cycling Man to keep up to date with the news / changing restrictions but I still needed to know. I was thought someone would come round at any time and tell us to go home. My Cycling Man leaving his phone switched on (for calls and audible beeps for text etc notifications) while we were out, didn’t help. It beeped by the Teifi and when it rang by the River Wye the week after, I imagined this river telling me to get a grip. I felt better during the second week, having completed the first and got around then. Our cottage then was near Hay-on-Wye, booked originally for the wedding in May, then postponed. It was very comfortable. Two days before we due to leave the Welsh Assembly announced they’d bring in a fortnight’s “circuit breaker” lockdown on the Friday after we got home. We’d got lucky with the timing.

Strong arguments to do likewise in England, where there was now a regional tier system of restrictions. Just before we headed off fairly early to get a walk up to the Trundle in before the rain came in, My Cycling Man let slip that the Westminster Government were considering national lockdown in England the following week as total confirmed cases (since the start of the outbreak) topped a million. That at least announced by PM Boris that evening and not left to hangover the whole weekend until the Monday. 5th November and last four weeks. Suspecting something like that coming, we got another visit to 37CA in the weekend after we returned from Wales.

 

 

Lockdown 2 – 5th November – 1st December

When that came it was nearly as bad as the first one, though I think my parents found it harder because they were older and found the time of year harder. What made the real difference was this time, it did not come with shielding. I still got a letter and emails from the national (NHS) one and local authority but they weren’t as heavy as the first lot. Just advised, like everyone else to stay home as much as possible and generally take extra care. Shopping not advised but I had absolutely no intention of going into any physical shop for at least that four weeks. On the same day lockdown started, I had an overdue telephone consultation with Kings. Overdue as it should have been in August but nobody called (among the medical admin hassles). It was Karen, one of the current Transplant Co-ordinators who called. A specialist nurse working closely with Dr. Agarwal, one of the consultants, congratulating me when he saw me in 2018 for coming up to nearly 30y post-TP. This was one of the most thorough consultations. She asked me lots of questions but in an easy chatty way conducive to opening up. She asked me how I’d been during the Covid outbreak, including the shielding. Me getting out walking and cycling despite that and how important getting out and about was to my quality of life came up later, when she asked about my mental health. This was the first time anyone at Kings had asked about my mental health. She was very supportive of everything I said and didn’t say anything to put any doubt in my mind about going out as per restrictions during this lockdown and after.

Because of lockdown we kept our time out to exercise only and stayed local. My Cycling Man went into the office to do essential classified work for 3 or 4 days during November and took the car out a couple of times to cycle from Farley Mount. I walked and cycled for home, usually for half days and back for lunch. I tried out My Cycling Man’s mountain bike (replaced with a girl’s saddle) during the latter two weekends in November and found it suited me.

The four weeks went by very quickly, as this time of year during the run up to Christmas always does. Though people were told by PM Boris and others Christmas would be different this year, the overall outlook looked more hopeful than it had done until now. Vaccine development / progress was well underway. One reason why if there had to be a pandemic, 2020 was a better time to have it than any earlier. The redeeming feature of 2020 was Donald Trump losing the US Presidential Election to Joe Biden. Only just and not without throwing his toys out of the pram.

Music / Keep Looking Up

I commented in the 2010s about music evoking a stronger emotional response than it did with me as a child / as a young adult. At least I was more aware of it and seemed to be more easily moved to tears. Usually soppy the soppy pop songs but also uplift. I now listen to most of my music streamed online. We now have a joint Spotify subscription meaning we can call up virtually anything. Rock and pop from the 1970s and 1980s was a relief as it came from easier times. Otherwise, music which particularly struck a chord this year included:

Feel tearful even recounting the Leo Sayer track which cut me up in Artroom the weekend before the first lockdown; Orchard Road. It was a guy who’d divorced or separated but now it chimed with me being unable to visit my parents / people generally not being allowed to see their families.

David’s lockdown concert – homebased at Cradley, with him playing the piano, a bit of Tom playing the Clarinet, playing the guitar and singing. Shared with the family / friends online as audio and video files. I’d heard and knew the sad story of Schubert’s life cut short / Last Sonata at David’s Kidderminster Town Hall concert in 2018, but now it was him inviting us to picture getting through this (lockdown) and walking on the Malverns. Because I was so missing places, that was the one that got me. The uplift came with David enhancing Don’t Stop Me Now by Queen on the piano: video with a portal with a rocket painted by William. Riding through Lee-on-the-Solent on a fine Sunday afternoon in September, Bicycle Race – I want to ride my bicycle. I want to ride it where I like played in my mind in defiance of my angst about the second wave.

Lockdown 3 - The Worst Sequel Yet

The Great Conjunction - on the 21st December, Jupiter and Saturn reached their closest alignment for about 400 years. Though it was cloudy that Monday night, I saw them low in the southwestern sky in the late afternoon twilight on the Sunday. They were less than a the width of the moon apart. These planets only align every 20 years: previously, I'd seen them aligned in 1980 and 2000. In any other year of my life until now, I would have been able to enjoy that and look forward to Christmas and switch off from the news for a bit. But not this year: it was now clear Covid cases were ramping up rapidly, threatening to over-run the NHS / hospitals  yet again. What's more, cases were now ramping up in SE England which had got off much more lightly than the north and midlands during the autumn. This is not quite what I heard in the press briefing (BBC News 19th December) from PM Boris and Chris Witty, but essentially:

For everyone living in, among other areas, London, Kent, all of Surrey except Waverley, Havant, Portsmouth, Gosport, Christmas is essentially cancelled. Everyone in Sussex, Southampton, Farnham, Fareham, Lockdown starts Boxing Day.  

 

 

Thursday, August 23, 2018

Flowing on over Fifty

August 2018 - drafted further to the UK ITP Support Association's Facebook requests for ITP stories to mark ITP Awareness month in September:
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Whitby late 2017
I’m an artist based in south Hampshire, where I regularly exhibit my pictures created with a mixture of media including collage and printmaking and regularly go out sketching. I’m drawn particularly to draw and paint water; rivers and the sea. The photo is of me out sketching. 

This was at Whitby. A cold day, with a bitter wind off the North Sea and  lingering snow on the North York Moors, meaning a very quick pencil sketch looking towards the Abbey. Appropriately, I'm wearing something purple: I was diagnosed with ITP in summer 2012, while in my mid-forties. It was the latest thing in a history of longterm conditions involving autoimmunity / an over active immune system. That began in young adulthood with autoimmune hepatitis (AIH) which I lived with (unknowingly) for about five years, during which time, I gained a science degree from a leading UK university and was among the top in my year, despite being very unwell. A few weeks after graduating, I was admitted to Kings College Hospital in London, where I subsequently had a liver transplant. I’m now the same age my mother was at the time and next year will be the 30th anniversary of my transplant. The full story of that is on my ArtyTransplantee blog, but since then, I’ve been taking immunosuppressants to prevent rejection of the donor organ; and well used to hospital appointments, pills, pills for the pills and blood tests. You could say that by the time I developed ITP, I was better prepared than many. Nonetheless, that and the low points from AIH onwards have hit hard: psychologically as much as physically, with prolonged periods of anxiety during and after the low points. Memories flowing from bad vibes in hospital from AIH days onwards are still vivid. Thankfully, the AIH hasn’t recurred; due to a continuing low, 5mg dose of prednisolone; and taking tacrolimus has kept the rejection problems I had during the 1990s in check. Nonetheless, I was surprised to develop ITP, and also before that Crohn’s colitis, while already taking immunosuppressants.

My ITP seemed to come on suddenly: until late July 2012, I’d been feeling well in myself, going out walking and my art was thriving. Then, just as the weather was summer was switching from being anomalously wet to heatwave, I was admitted to hospital in south Hampshire with saucer size bruises, a purple rash including on my face and bleeding in the nose and mouth.

My stay in hospital this time was ten days rather than the ten weeks around the time of my transplant. I was very well looked after, treated effectively and again had real awareness and appreciation for everyone working in the NHS, invariably under pressure. Nonetheless, it’s an experience I don’t want to repeat. Unhappy memories and parallels from the past added to the perfect storm of noise, heatwave and people around me being very unwell and distressed. All along with the broad spectrum side effects of steroids, including effects on mood and great difficulties sleeping, which I know other ITPees without exception find so hard to deal with. All in all, the mental bruises took much longer to heal than the big OMG purple ones.

When I found out how low my platelets were – 3 points – I was scared. Among the parallels with my previous liver disease was a real risk of internal bleeding because my blood wasn’t clotting, though there low platelets weren’t the prime cause. I was lucky to get a quick diagnosis of ITP, by the Haematology and Oncology team within a day of being admitted to hospital, from a bone marrow biopsy. The team had also heard of the condition and, even though it is classed as a rare disease in the UK, they had seen other people with the same. It took me a while, though, to get the letters in the right order and remember what they stood for. It sounded more like a technophobia affliction, so it was simpler to tell people I had a low blood count or bleeding disorder.

They tried treating me with steroids: my prednisolone was increased to 60mg daily. It soon became clear that I was among the I was among the awkward, unresponsive, refractory 15% - 20% of ITPees: my platelet count barely moved and bottomed out at 2. I was given a two day infusion of intravenous immunoglobulin (IVIG). This made me very headachy and nauseous, but it worked: the platelet count increased from 2 to 67 and I came home at the beginning of August. When the count dropped again four weeks later and I was readmitted for another round of this, my Haemotologist was able to contact Professor John O’Grady at Kings: he’d been on the liver team when I’d had my transplant and I’d occasionally seen him as an outpatient when he became head of the Institute of Liver Studies. He recommended a change in immunosuppressants. After introducing mycophenolate mofetil (MMF), 1g bd my platelet count quickly returned to normal; but there then followed a gloomy, messy, muddy autumn involving not only platelets crashing in a fortnight from 167 to 12, but also a recurrence of the rejection problems I’d had during the 1990s, requiring a short stay in Kings in late 2012 for a liver biopsy. From that, it was clear I needed to take both MMF, for my ITP, and Tacrolimus for my liver, along with the low dose prednisolone. The MMF has since been reduced to 500mg bd, but this combination of immunosuppressants has kept my ITP and liver issues in remission for over five years. My platelet counts have been normal or near normal. At my last six monthly visit to the liver clinic in August 2018, they thoroughly reviewed my medical history, were generally pleased and said best not change any medications, to avoid rocking the boat. In the follow up letter from the consultant I saw, "I have congratulated her in her meticulous oversight of her condition and her upcoming 30 years post transplantation.",

My main side effects have been repeated, ongoing low white cell (neutrophil) counts, prompting repeat blood tests for the Haematologist and GP, who are both more wary of me taking MMF longterm than the liver team who see many transplantees who have been taking it as one of three immunosuppressants for years without major problems. It was the latter, though that reduced the dose when they caught a particularly deep white cell drought after a feverish cold in February 2016. The most disruptive thing has been a light-sensitive migraine-like headache, meaning sunglasses indoors; black out curtains in the artroom to reduce the glare; and cloudy days coming as a relief. That came on pre-ITP, lasted throughout my forties, but seems to have lessened on the lower dose of the MMF. I also have unexplained eczema and am currently dealing with the usual things women have to deal with by 50-ish.

Otherwise, I’m flowing and painting on, with a healthy active life involving my art, walking, and though I haven’t directly applied my degree to my art or earlier scientific work, it’s given me a continued understanding and key fascination with how the world and the universe work. My particular interests there are now Earth and environmental sciences which have informed happy holidays and days out. 

Wednesday, October 11, 2017

One Full Calendar Cycle and Almost Fifty

Spring Downland - Collage on 10cm Square canvas.
Copyright: Joan Lee
As well as turning fifty in 2017, I reflect on twenty-eight years post-liver transplant. To mark these milestones, I have donated money to King's College Hospital Much of it raised with the support of my local art group who donated art materials to sell, and bought them  the sales table at our evening meeting last week.

We tend to mark birthdays and anniversaries in multiples of ten, but I also take the twenty-eight calendar cycle to be a milestone (seven days a week, leap year every four years). My mother was also fifty at the time of my transplant.  In the midst of a busy autumn preparing artwork for 2018 exhibitions; reflecting on recent trips to Scotland; changing family dynamics; and first-world agro which is frustrating me but I won't repeat here; I haven't had time to write much, or revise what I've written before. Except to say, that I've generally been keeping well, for which I'm very thankful. Thankful firstly to my (anonymous donor) who gave me the gift of life. Around my 25th TP anniversary in 2014, I wrote this as if a letter to my Donor:
My Transplant 25 years on

I'm thankful, too for all the care and compassion I've received whenever I've been unwell; at King's College Hospital as an inpatient pre- and post-transplant and subsequently as an outpatient. Likewise my local hospitals and GP. This all comes under the NHS, which has always been under lots of pressure from high demand and limited funds. Everyone who has looked after me has been amazing, invariably doing a good job under difficult circumstances. Without a publicly funded healthcare system, free at the point of delivery, I don't know where I'd be. Then there was the tremendous support from friends and close family. In many ways, it's been harder for my parents. As a family, we all very anxious whenever anyone is unwell. We were all deeply affected by the loss of a young loved one in the mid-2000s. It then hit me that while my parents (in the late 1980s) were breathing a sigh of relief that I'd had a successful liver transplant and was heading home a few weeks later, there was another family out there somewhere grieving for the loss of their young son.

At forty-four, I'd lived longer with my transplant than my own liver. Re-reading my mother's thorough account of our family history, has made me realise how lucky I've been to get this far, and how relatively cushy I've had it. I've now outlived my great grandfather (mother's side). He took one of his names from a river in Cumbria, near where I enjoyed some happy early childhood holidays and more in adulthood. He was himself was one of only three surviving children of a family of seven living in NW Cumbria in the late nineteenth century. No easier either for other branches of the family tree. In the shocked, bleak days before my transplant, it really helped me to remember that there was, and is, always someone somewhere worse off. Usually I didn't have to look far. After the op, I felt very anxious, even with what were minor, normal and manageable blips. Always worse when on my own and not hearing how other people on the ward were getting on.

These are links to my ArtyTransplantee blogs, written in 2013; and also my ongoing art and water blogs:-

My Story - Living (Unknowingly with AIH), in my late teens-early twenties during the 1980s.
Last March, I wrote at length about my young adulthood living with AIH. It was emotionally difficult writing it and looking back on it all. For now, then I've left it offline and concentrated on my art and other things which interest me and keep me busy for now.

My Story - Liver Transplant and After
Thankfully, the AIH has not recurred, but because of it, I still take a 5mg daily maintenance dose of prednisolone reduce the risk. I had further issues during the 1990s with toxicity to the azathioprine I was taking during my first few years post-transplant; and then chronic rejection affecting my bile ducts, where I still have a narrowing (stricture). There was a time in the 1990s when I thought I might lose my transplanted liver because of it, but thankfully, I was saved by a change in immunosuppression, from cyclosporin to tacrolimus (Prograf). At the time of my transplant, tacrolimus, was almost still in the experimental stages, in Japan, I believe. Thanks to its early successes in stopping or curbing liver transplant rejection, they started using it at King's College Hospital more widely in the early 1990s. By the time I started taking it in 1997, their level of experience was about the same as with cyclosporin during the years before my transplant. It took time, but my rejection stabilised and, by late 2000, Kings were unable to detect it. But for a blip in 2012, all my liver tests have been normal.

Though my rejection stabilised, I went on during my thirties and forties to develop Crohn's Colitis, a form of inflammatory bowel disease (IBD). I first noticed symptoms not long after I began taking tacrolimus but was too embarassed to act on them, until blood tests at the liver transplant clinic showed I was anaemic (low haemoglobin and ferritin. I was referred to a GI clinic at my local hospital; and probed at both ends. After the probe-round-the-back (colonscopy), I was diagnosed and treated with steriods and mesalazine (Pentasa) in 2003. For a while before then, embarrassing dashes to toilets (or failing that bushes). So good to be rid of all that! I responded to the increased prednisolone within a couple of days. I got my energy back. It was if the river hadn't known how low it had gotten until the replenishing rains came.
Since then, that has been stable and inactive, though my recent blood tests have indicated low iron levels which might or might not be related.

I then enjoyed nine years with no major health issues. In that time a couple of nasty bugs, including a belated bout of chickenpox in 2009. Otherwise, I'd almost forgotten I'd had a transplant or that there had ever been anything wrong.

Then in summer 2012, apparently out of the blue, I developed nose and mouth bleeds, followed by a purple rash and bruises all over my body, some almost the size of saucers. My GP took one look at me late one July Tuesday and said I had low platelets. After a blood test showing a platelet count of just 3, I found myself back in hospital, this time my local hospital. An emotionally trying experience, bringing back memories from my time in hospital in the late 1980s. There were things in common: the six o'clock phone call with blood test results indicating drop-everything-and-go-to-hospital; and being put on steriods and not responding to them. I was relieved, though to receive a quick diagnosis: ITP - autoimmune thrombocyctopenia. As with AIH, autoantibodies attacking my own cells, this time platelets. Blood cells more easily replaced than livers, but initially I was frightened; and anxious for a over a year afterwards. For more:

My ITP story, written during the year after my diagnosis.

Thankfully my ITP has remained stable, and symptom free for nearly five years now, with platelets counts usually in the normal range. The last, yesteday, wsa 178. Reassuringly, they held up well after my mycophenolate (MMF) dose was reduced last year. I've still had some lower than normal white cell (neutrophil) counts, but as that doesn't seem to have given me any problems (more infections) my Haematologist is letting that lie for now.

There have been, and still are a few irritating, disruptive things which I've put up with for a long time, putting them down to side effects of medication and the usual stuff which goes with being female and a certain age. Among them: constantly itchy skin - various forms of itching at different times;  Worse during the past 8 years.  Throughout my forties, migraine-like headaches and light sensitivity, particularly in the lighter, brighter days of spring and early summer.

Enough on all that stuff. Links now to my Water and Art Blog. This last entry, gives a feel of my combined passion for the two, with some sketches from the Keswick area, done last month:
http://artywater.blogspot.co.uk/2017/10/sketches-from-keswick-area.html

Tuesday, March 7, 2017

ITP and the Flu' Jab


In the December 2016 issue of the ITP Support Associations quarterly newsletter The Platelet, there were a couple of items about ITP and the flu's jab. Some ITPees say that their platelet counts dropped after the jab, though everyone's experience is different. In response, I thought I'd share my experiences with the flu' vaccine, and viral infections more generally. This is the gist of what I said, published in the March 2017 issue (pictured right):

At the time of my ITP diagnosis in summer 2012, I was already taking immunosuppressants, being 20+ years on from a liver transplant . As recommended by the transplant team, I’d had the flu' jab annually. After I had the jab in October 2012,  about three months after my ITP diagnosis , my platelet count dived from 167 to 12 in a fortnight.  I don't know whether this was the jab, or the change in my immunosuppressants around the same time(see below), or a combination of both. Either way, this experience made me very wary of having the flu' jab, and very nervous of catching infections generally for the next couple of years . With common coughs and colds,  my worries were  unfounded –  the usual agro of blocked nose, sore throat etc, but no big drops in my platelet count.

About six weeks after my ITP diagnosis, I began taking mycophenolate mofetil (MMF), in addition to the immunosuppressants prescribed by the transplant team ( tacrolimus (Prograf) and a 5mg daily maintenance dose of prednisolone). Two months on from my  diagnosis and about three weeks before my flu’ jab,  I was advised (by a member of the transplant team) to stop the tacrolimus. They reintroduced this gradually over the next two months, due to renewed liver problems (rejection) provoked by its withdrawal. I then continued to take MMF and 5mg prednisolone daily. This combination of immunosuppressants has kept  the liver problems in check and  my platelet count has been stable for the past four-and-a-half years  (usually 150-165). The main issue has been, unsurprisingly given all my immunosuppression, lower than normal white blood cell (neutrophil counts), putting me at increased risk of infection.


After three years of platelet stability I had the jab in 2015 and 2016 with no problems. After a  particularly vicious, feverish cold  in February 2016 I made my mind up firmly to have the jab from then on. That cold developed into a chest infection and I generally felt very unwell.  A blood test  a few days after this developed (at the transplant clinic) showed my platelets dropped from 160 to 114. More seriously, my white cell count was low, my neutrophils only 0.5, putting me at increased risk of complications from the infection. They advised me to stop my MMF for a few days and get another blood test done. When I did, it showed my white cells had returned to normal (neutrophils 2.8). I could then restart my MMF, though on a lower dose than before (reduced for 1g bd to 500mg bd). Thankfully my platelet count has held up on this lower MMF dose (and with two more colds during 2016), though I've still had some lower than normal white cell (neutrophil) counts.  

Tuesday, February 28, 2017

Notes on ITP and Stuff

Rare Diseases Day 2017 - Tuesday 28th February

Shared by the ITP Support Association on Facebook 27/02/17
Rare diseases aren't as rare as you might think, then; and, taken collectively, they affect a lot of people. ITP is just one of the 6000+ rare diseases. Until my diagnosis in 2012, I hadn't heard of it and it - this is usually the case, though thankfully the Haematologists treating me at my local hospital had done and were able to make a relatively quick diagnosis. The consultant I subsequently saw as an outpatient also said she was no stranger to people with low (single figure) platelet counts and saw other people with my condition. 

ITP blog
The author of My Purple Patch  Anthony Heard has taken an active part in the the UK ITP Support Association for much of the time since his ITP diagnosis in 2006. He started writing this blog about his ITP story last summer, from around the time to the present. I'd recommend reading it on a relatively large (a 15" laptop or better) screen as it is easier to scroll down. It flows as one long river: it seems the Simple Site setup does not seem to allow for jumping (clicking) between installments.

His story differs in the details from mine - he emphasises that everyone is different, responding differently (or not at all) to various treatments. This doesn't just apply to ITP. I'll repeat his disclaimer too that anything he says should not be taken as medical advice. It goes likewise for anything I say here on this blog as ArtyTransplantee. 

One of the take-home messages through reading Anthony's story is the mental hit from the condition was just as great as the physical one, and should not be underestimated. Becoming an ITPee with no pre-existing health conditions or  past experiences of hospital vibes did not make it any easier. 

Anthony usually ends his installments with best wishes of Platelets Up. I'll run with water and art and say:

Flow on and paint on!



Monday, July 25, 2016

Blood Stream Wordplay


Here is some collage work, done four years on from my ITP diagnosis. I call it Wordplay – working with letters / characters/ type with a mix of letterpress, stencil, rubber stamping and newspaper cuttings. These are in a long format, 42cm x 16cm sketchbook. For more, please see entries in my Water & Art blog where there are examples of postcards, posters and folded books I have made this year. 

See ITP and All That for my full story, written during the first year after my diagnosis, when I was still very anxious; the difficult time around my diagnosis and its aftermath still very much at the forefront of my mind.  I admit it rambles on somewhat. These collages sum it all up, in a more concise way.



Some people talk about their experiences living with long term health conditions, and life more generally, as a journey. I’d liken mine to journey on water, steering my boat through choppy waters avoiding the whirlpools and being swept along by the current during the more turbulent times. The wordplay features a plot of my platelet count since the diagnosis. There are peaks, troughs and blips. If comparing with a plot of river flows against time, a hydrograph, the flow almost dried up four years ago: the count being 2 or 3 (units billion cells per litre of blood), and unresponsive to steroids.



After refreshing rains - treatment with IVIG  and additional immunosuppression - it subsequently rollercoastered with highs of up to 190, but there were also two further dives, resembling perhaps an intermittent flash flood prone river amid a dry climate. The flow eventually steadied once the Haematologists and the liver team found the best combination of immunosuppressant for me as an ITPee and liver transplantee: tacrolimus (Prograf) and a maintenance dose of prednisolone for the transplant; and mycophenolate (MMF) for the ITP. Thankfully, I have been symptom-free since 2012, reflected in the much steadier platelet plot 2013-15. If a hydrograph, the profile during that time resembled a chalk stream: I live close to some of the famous ones in Hampshire, crystal clear water.


Sticking to the best combination of the aforementioned drugs has been the key thing to controlling my ITP and preventing transplant rejection.  Like all drugs, immunosuppressants do have side effects. Throughout my forties, I’ve been prone to light-sensitive migraine – I sit at my laptop typing this wearing polaroid sunglasses – put down partly to my tablets. I seem to have mislaid white cells (neutrophils) periodically, too, potentially putting me at increased risk of bacterial infections.  Wary of the side effects, my Haematologist discussed reducing and ideally stopping my mycophenolate at clinic last year, though we agreed best not rock the boat. The registrar I saw at the transplant clinic said leave alone, not wanting to risk any liver problems resurfacing. Then, last February, a particularly foul, feverish cold rocked the boat (see last entry) and forced the issue.



The ensuing blip in platelet count (falling from about 160 last autumn to 114) and the more worrying white cell drought (neutrophils 0.5) could well have gone unnoticed but for it being caught in a blood test at the liver transplant clinic. On their advice, I stopped my mycophenolate for a few days, then restarted it, but on a lower dose (500mg bd). My white cell count recovered, though it has still been variable. As mycophenolate seems to have been the key thing keeping my platelets comfortably normal, controlling my ITP, I was worried about the count diving again if I reduced it. Low enough even for the bleeding / bruising symptoms to resurface . Yet, completely contrary to what I’d have expected with an autoimmune condition, the count initially spiked. During the first week of March, the count increased to 219, my highest as far as I know for 10+ years. A few weeks later it drifted back down to the level it has been during the past three years (156). I caught a bug again in May - just as I was due back at the transplant clinic for another blood test. This time, my worries about blood stream levels turned out to be unfounded: the platelet count just over 200 and my white cells were normal.

Catching bugs has been a bugbear. During the first 18 months after my diagnosis, I was particularly paranoid about viruses, in case the immune response to the virus involving antibody-bearing lymphocytes also triggered the release of anti-platelet auto-antibodies. Though advised to have the annual flu’ jab as a liver transplantee on immunosuppressants, I missed out for two years, worried that might trigger a drop. It now looks as if the platelet dive in October 2012 was mainly drug-related, but it also came shortly after my flu’ jab. I was nervous anywhere indoors and busy, worried I might catch something. When I eventually caught a cold from my other half, it came with nothing more than the usual bunged- up irritations. Likewise bugs of all seasons in 2014-15. My anxieties  eased: if any effects on the blood stream at all, they were blips and not dives. After a spring cold which was slow to shift, I changed my mind about the flu’ jab and had it last autumn. I didn’t want to risk the regular but potentially serious complications of flu’. Then, after last February’s fevers, my GP hammered this home. I plan to book a jab this autumn.

This bug related paranoia, along with anxiety, loss of confidence and intrusions of unhappy hospital-related memories were all part of the hit I took psychologically during the months after my diagnosis. Thanks to the subsequent period of relative stability, health matters have resided further at the back of my mind, enabling me to knuckle down to art and other matters.

For the future: Fingers crossed - Platelets up – Steady, healthy  flows - Be Arty and Ride on. This wordplay poster after Douglas Adams Hitchiker's Guide to the Galaxy.




Finally, a link to My Purple Patch – Anthony’s story. The author is Anthony Heard, a member of the team running the ITP Support Association in the UK. http://anthonyheard.simplesite.com/http://anthonyheard.simplesite.com/