Part 40 – Jan 2020

Valley View

I can’t believe it’s almost 5 years!

The start of a new decade seems like a good time to update ‘Memoirs of a Nutter’.

The end of the 2010s were marked by two major battles: one against the Department for Work and Pensions (DWP), which I won, and one against the woeful mental health system, which I didn’t.  I will come back to those later.

Since my last blog entry four and a half years ago, I have enjoyed the continued support of my partner, in spite of his own difficulties. Continuing with my self-devised programme of ‘positive activities’ has led to varying degrees of success.  Unfortunately, my aromatherapist moved away but mindfulness still had a positive effect.

I found ways of living with constant depression and anxiety; the overriding issue for me now is without doubt chronic fatigue (CFS).

I modified the demands I placed on myself to accommodate this.  For example, in 2015, I gave up working in the charity shop as even 2 hours a week was too much for me (the bitching didn’t help either).  I followed this with a stint as a volunteer support worker for an ex-associate now running an adult beginners’ IT courses nearby.  Although much more enjoyable and in line with my skills, I could not sustain it.  I ended the year with the realisation that I was not ready for the ‘world of work’ in any form.

Flooded Town Centre

Meanwhile, the town ended the year devastated.  In the aftermath of the now infamous ‘Boxing Day flood’, the whole town centre was submerged, wreaking havoc on homes and businesses.  The effects are still being felt today.

During 2016, I focused my writing on ‘Cool Places’ (published on WordPressⁱ).  By summer 2017, I amassed enough material (both old and new) to compile a book. 

Although I received a few encouraging responses and comments,  getting published seemed impossible without already being famous.  I considered self-publishing via Amazon Kindle but working through KDPⁱⁱ also proved too much for me.  I decided to approach local media to publish extracts.  On contacting Valley Life magazineⁱⁱⁱ , they said yes straight away!

Draper Lane, from Valley Life Magazine

Now into the third year of submitting bi-monthly features to Valley Life, the audience for ‘Cool Places’ has widened to include people who don’t access web-based material.  Although unpaid, I receive positive feedback from friends and acquaintances and can now say I am a published writer, hopefully leading to future work.

2016, however, brought more than its fair share of travails, with early summer being particularly trying.  Amidst the start of the Brexit debacle (who’d have thought what a palaver would ensue over the next three years?) and reeling from the murder of Jo Cox, I lost another brother, making two in 18 months . The circumstances of his death were very different.  He was found face down in a canal, apparently falling while walking on the towpath.  Speculation included suicide, which his ex-wife discounted immediately on the basis that he hated water (this was true; I remember my dad fruitlessly trying to teach him to swim when we were kids), and the ‘canal pusher’ which his estranged daughter irritatingly fixated on.  Some months later, an inquest returned a verdict of ‘unexplained death’, most likely an accident.

A horrendous period ensued.  Mum characteristically ended up in hospital the day after my brother’s body was found.  This left her offspring with the double burdens of arranging the funeral and addressing her needs.  Following a stay in a medical ward, she was transferred to a rehabilitation hospital several miles away.  I arranged a lift from an extended family member.  During the visit, I tried to talk to mum and the care staff about addressing her mental health issues.  It felt as though I got somewhere but as usual, it was one step forward, ten steps back.

After the visit, my lift drove me to mum’s house for a cuppa and an illuminating chat about the brother who died 18 months previously.  Soon after she left, one of my sisters arrived and treated the whole thing as a work project.  Along with our two younger brothers, we dealt with the practicalities of the funeral, and Mum’s aftercare.  Not being in a position to travel over The Pennines on a regular basis, I volunteered to conduct ‘desk research’ into care homes in case she could not cope with returning to her own house, but not before enduring some abuse for interfering.

I remarked that due to mum’s situation, our grieving process was yet again impeded.  None of the others seemed to care that we had lost another brother.  I felt so upset and stressed it was hard to focus on little else for several weeks.  As a cathartic exercise, I wrote a piece of prose about my brother, which eventually formed the basis of a eulogy (i.e. saying words) at the funeral – the only one as it turned out.  My voice cracked at the end of my short speech and although not intentional, I was commended on my performance.  Later, I reflected that in spite of being plagued by ill-health and experiencing diminished brain capacity, I could still deploy those rusty old skills when needed.  My art friend provided some much-needed additional support and very kindly drove me and my partner over The Pennines. We returned via the scenic route and stopped for a drink at a country inn, providing a brief, pleasant diversion.

A few weeks later, Mum returned home and I phoned to see how she was doing.  Straight away, she asked me to rush over and put her in a care home.  I said I was not able to come immediately  but would ring  the places on my list and find vacancies.  I arranged a couple of interviews for the following day and set off the next morning to be with her.  By the end of that day, with help from my youngest brother and the extended family member, we got her to a care home in time for tea.  My brother gave me a lift to Rochdale so I had a mercifully easy journey home, where I collapsed in an exhausted heap.

Maggie's 80th

Thankfully, family troubles quietened down after that; it was a relief to have mum looked after although she ended up being moved to another care home closer to her house (even though she would never go back there!)

A much pleasanter family get-together took place towards the end of the year.  My Aunty Maggie turned 80 in December.  We enjoyed a lovely evening at her birthday party, an amiable overnight stay at mum’s house and  lunch at the fab Indian café with my sister before returning home the next day.

The start of 2017 also entailed family duties.  The cost of care necessitated renting out mum’s house.  Again, I got a lift from my kind art friend,  to help my brother and sister with the clearance.  It took the whole day to sort through cupboards and make piles of stuff to keep, to go to the charity shop or the skip.  We loaded my friend’s car with items we wanted and had dinner at the Indian café before getting lost on the way home thanks to the one-way system!

Flaming Wire, Photography Course

On a personal level, the rest of the year was largely major-incident free.  With no change in my health issues, I made an effort to stay positive and forward-thinking and added activities to my weekly routine which I thought would be of benefit.  My partner gave me a Bridge DSLR for Christmas and in January, I started a creative photography course which helped me develop my skills (sic),  not only did I link these  into my writing projects, I also broadened the scope of my photography and picked up quite a few techniques.  Best of all, I made a new friend who I meet up with quite regularly.

Towards the end of the year, I embarked on a beginner’s adult ballet class, primarily because of its proven benefits for both mental and physical health.

My partner finally persuaded the powers-that-be to make him redundant.  He became officially self-employed in April.  Since then, he has been working on a variety of photography and digital art projects and although not earning enough to pay tax, he is a lot happier.  He has recently joined the gig economy answering on-line questions for shutter stock at a dollar a pop.

Unfortunately, he has also suffered a series of traumatic health issues, the most worrying being a  lump in his neck.  After a year of trekking to ENT at Huddersfield and a roller-coaster of conflicting diagnoses, he was finally told it was not cancer in May 2018.  Soon after, he woke one morning unable to see out of his left eye (the one he uses for taking photos).  He is now half-blind.

In spite of the difficulties, we found amusement following the antics of our elected representatives.  

Not only did the Tories hold the Brexit referendum in June 2016 that we didn’t need to have to drag us out of Europe, they then held an election in July 2017 that they didn’t need to have, resulting in a reduced majority  ( thanks to their own stupid manifesto and plans for the so-called ‘dementia tax’), thus prolonging the agony; and after all that, four years later, we left anyway!

Stoodley Pike Shadow

2018 had some dramatic ups and downs.  Notable fun times involved more Brexit malarkey, a very hot summer which prompted us to undertake longer days out including a long-overdue return to Stoodley Pike, and the World Cup.  My partner had yet more hospital visits, this time concerning his vision after which they concluded there was no point having surgery.  He has adjusted in his usual stoical fashion.

My established pattern of managing my health problems and engaging in constructive activities was disrupted by a re-assessment for Employment Support Allowance (ESA), which proved to be an incredibly drawn-out process.

I will reflect on this more fully in a different blog, but briefly, I completed an assessment form in March and subsequently attended a face-to-face‘ fit for work’ (ATOS) assessment in August.

Sant Andria Beach, Menorca

The day before we flew out for a  holiday in Menorca, a letter from DWP arrived, stating I was ‘fit for work’ and my ESA would stop immediately.  Needless to say, my stress and anxiety levels went through the roof.  I managed to calm down sufficiently to contact Citizens Advice Calderdale (CAB) ^iv for advice who told me what to do and not to worry during my holiday.  Easier said than done!  Still, a spell in a quiet corner of  The Balearics did me no harm.

On our return home, the battle with the DWP dominated the next fifteen months.  At the end of it all,  I attended a tribunal hearing in December 2019, which I won - what a stupid system!

Alongside all this hassle, I decided to have one more go at trying to get to the nub of why my health had not improved very much in the past six years.  I asked the GP to re-do tests to determine if there were any underlying physical reasons for my chronic fatigue and depression.  The results showed nothing other than a vitamin D deficiency (not surprising given it was the dark months in the North of England and addressed by taking a supplement) and pre-diabetes.

This was a complete shock.  I had always thought my diet was relatively balanced and healthy, I hardly went out drinking anymore as it was too expensive and although a bit overweight, I was not obese.  When I got over the initial shock, I felt angry.  Several people I knew had much unhealthier lifestyles, seemed less conscientious about their diet and drank regularly.  I then realised that they could have the condition but not know.  I decided to take control of the situation.  The doctor had referred me to a clinic but while waiting for an appointment, I conducted my own research.  This confirmed my view that the weight (particularly the surplus fat round my middle) was the biggest risk factor and totally reversible.

With the help of the Diabetes UK website^v I put myself on a healthier eating regime.  This entailed making changes I could stick to, rather than cutting out certain foodstuffs altogether, namely, fats, sugar and carbs.  I measured oil for cooking rather than glugging it into sauces, switched to healthier sweet treats such as malt loaf and dark chocolate rather than cream cakes and swapped ‘bad carbs’ for good (for example, brown rice and bread) and weighed out pasta and rice.  The run-up to Christmas is not traditionally a time for calorie-counting.  I was incredibly good for 5 weeks, then didn’t worry too much during the festive period.  And guess what?  I still lost body fat!  With no bathroom scales, I used a tape measure as a gauge.  During the first few weeks, I lost 2 inches off my waist.  Over Christmas and new year, I lost another inch and a half.  Who does that?

I had an appointment at the diabetes prevention clinic in February 2019.  My blood sugars had dropped several points.  They wanted me to go on a course and I initially agreed, but later decided not to.  It would have involved going to the surgery practically every week for about a year, at 10 a.m., for an hour!  The programme they sent me indicated I had dealt with the contents already e.g., sessions on carbs, sugar, fats etc.  Since then, my blood sugar levels have dropped to well within the normal range and my body fat has continued to reduce – so much so that I can wear size 8 skirts and I want it to stop!

As an unintended consequence of the ‘healthier eating’, my partner has also shrunk.  It can be galling when people notice and ask him “have you lost weight?” while I am stood there thinking ‘oi!  What about me!’  The fact is that his metabolism means he needs to eat a lot more than me.  I encourage him to consume extra pies at every opportunity.

Halifax Minster

I had less success addressing the mental health side of things.  I have provided an overview of the key events here, with plans to provide more detail in another blog.

Having determined that there was no underlying physical reason for my chronic conditions, I embarked on yet another odyssey to get proper help.

After a six-month wait I was offered counselling in Halifax.  The tedium of weekly trips to Halifax was alleviated by my partner meeting me for lunch and a visit to the amazingly historic minster.  But it proved patchy and unsustainable.

Due to sometimes being too ill to attend, I was discharged before the end of the therapy, raising my stress levels yet again.  Following a complaint, I was offered a fresh face-to-face assessment, promised to be nearer to home. After more toing and froing, I was eventually offered an appointment at the local health centre.  Predictably, the promise of  ‘a range of options’ was nothing of the kind; it was CBT, counselling or nothing.  The therapist said if I wanted any other kind of help I would have to go back to the GP.  But of course, the GP had nothing else to offer.  So the circle had no end!

In light of the fact that no other help was available, I was persuaded to continue, even though the therapist had doubts that CBT was right for me as I didn’t “like being told what to do”.  I laughed and said that was true..  We eventually  came to an agreement to work on my Chronic Fatigue (CFS).

I mentioned to my GP that I did not have a formal diagnosis of CFS.  Apparently. it was quite a rigmarole involving several trips to the hospital in Leeds, at the end of which, one of the treatments suggested would be CBT so she suggested I give it a go.

I attended the CBT sessions regularly for the next few weeks, trying to keep an open mind but all the time wondering why I was bothering.  The ‘therapy’ for CFS consisted mainly of stuff I had been doing by myself for several years.  I asked “what else have you got?”  Answer: “I don’t have a magic wand”.  i.e., nothing!

We moved onto tackling anxiety.  Similarly, this offered little in the way of new techniques and created a whole pile of homework which took over my life.  With that and the impending tribunal hearing, I hardly had any time to concentrate on my own positive activities such as writing.  My anxiety and frustration levels sky-rocketed and I felt angry all the time!

In spite of success at the benefits tribunal hearing at the start of December, I was totally drained.  I rang to cancel that week’s CBT and decided to take a breather until after New Year.  During the hiatus, I considered if I really wanted to continue  and realised that I was calmer, less angry and less anxious since I stopped going.  Thus the CBT had actually made me feel worse and I discharged myself at the start of January 2020. 

They will probably put me down as a ‘positive outcome’, whereas in truth, I have decided that I am better off dealing with my issues on my own after all.  I want my life back!

References

i.   KDP (Amazon Kindle Direct Publishing): https://kdp.amazon.com/
ii.  Cool Places: https://hepdenerose.wordpress.com/
iii. Valley Life Magazine:  http://valleylifemagazine.co.uk/
iv. Citizens Advice Calderdale: https://calderdalecab.org.uk/
v.  Diabetes UK: https://www.diabetes.org.uk/