Author Archives: Jak

Weekly roundup

I have had a horrendous few days.  The depths to which people can be vicious and vindictive shocks me, especially when they are grown adults.  I have alternated all week between being  angrily defiant to being a weepy, crumbling wreck – I am too ill for this crap which is wholeheartedly undeserved.  I wrote about the situation in my last post so I won’t harp on.

As if being slandered and publicly humiliated weren’t bad enough, I have had one of the worst colds in years this week.  It started with an 8 day migraine, then came razor blades every time I swallowed and three days later the sneezing, streaming and coughing began and to add insult to injury I still have a banging head.  Due to that, and the almost unbearable stress of recent events at my Camera Club, I have barely eaten or slept for days.  The Pheasant splattered by a car on the road outside my house feels better than me today.

I have felt so poorly I have done nothing and seen no-one.  I speak like Donald Duck, cough like a 40-a-day chain smoker and you can image what massive stress + a virus has done for my M.E.   Consequently I really don’t have much to tell you.

The only bright light on the horizon is the news that I won another photography medal this week at an international Salon.  Silver, for my new picture called ‘On the shelf‘.  My friend told me she now has congratulations fatigue.  Another medal?  Yeah, whatever……. 😀

Advertisements

Think before you act

When we’re kids, we can go up to another kid in the playground kick his shin and steal his dinner money and although we get told off that’s the end of the consequences.  When we’re adults it’s a whole other ballgame as we’d be arrested for theft and assault.

I am hugely principled as a person.  Having been on the receiving end of injustice on more than one occasion I know what unfairness feels like.  I try to live my best life, to be fair, to be honest and to generally be nice.  I can’t see the point in being any other way – we are all contending with shit in one way or another and life is hard enough without me adding to someone else’s struggle.  However, none of us are perfect and we are all, myself included, allowed to make mistakes without being judged.  We have bad days, lash out when we shouldn’t and say stupid things we instantly regret.  As long as these are isolated incidents and we apologise I think everyone accepts it’s normal human behaviour.

However, there comes a time when actions become unacceptable.  If there is a deliberate attempt to cause someone else hurt or harm, for example, and particularly if this is sustained over a period of time it is not OK.  I am of the opinion that this behaviour should not be swept under the carpet but exposed.  “The only thing necessary for the triumph of evil is for good men to do nothing” Edmund Burke.

As you know if you read my blog regularly, I have been made to feel so uncomfortable by a tiny minority of women at my Camera Club that I have decided to leave.  I posted about this a month ago on my private Facebook page.  It was a post set to ‘friends only’, didn’t name names or identify anyone, just said that I felt I had been bullied and that I was leaving as a result.  There was no slagging off, name calling or nastiness – just the facts.  I was very careful and measured in what I said as I’m well aware of the laws of libel and bringing an organisation into disrepute.  I then went on to say I’d had an otherwise wonderful 5 years at the Club and had made some lovely friends.  The reason I wrote the post was that bullying behaviour should not go unchallenged, particularly when the bullies are in positions of power within an organization.

I then wrote a detailed confidential email to someone on the committee saying exactly why I’d left.  The person replied they didn’t want to get involved and it was nothing to do with them.  It should have been to do with them, however despite feeling let down I accepted it and was happy to walk away.

This week was the Annual General Meeting at the Club.  AGMs are official meetings where accounts are agreed, committee members elected and the official running of the Club discussed.  The meetings are minuted and the minutes placed in the public domain for all to see.

I didn’t attend the AGM, having left the Club some weeks ago, however I was informed by a friend the next morning that my private Facebook post had been brought up, discussed by the entire Club and my character basically assassinated.  Not only is this morally wrong, after all I have never done anything wrong and I was the victim of bullying behaviour which has not been tackled in any way, but it is illegal.

Contrary to popular belief, social media posts are not automatically legally classed as being in the public domain.  If we set a FB post to ‘public’ it is public.  If we set our privacy to ‘friends only’ it is classed as private, just like a letter sent to a friend.  It is also subject to copyright laws and cannot be shared or re-distributed.  There are exceptions, for example if a crime is committed your post can be used in evidence, but other than that it is not for public consumption.

In addition, laws of libel (for the written word) and slander (for the spoken word) exist to protect people’s reputations.  A defamatory spoken word or gesture is usually classed as slander if it:

  • exposes a person to hatred, ridicule or contempt; or
  • causes him/her to be shunned or avoided; or
  • has the effect of lowering his/her reputation in the estimation of right-thinking members of the public generally; or
  • injures him/her in their office, profession or trade.

it is very clear what happened at the Club’s AGM was slanderous.  In order to be slander, the person has to be clearly identified (which I was, by name), the slander has to be witnessed (which mine was, by dozens of people) and it has to cause one of the above (I don’t think there is any doubt the effect of the discussion was such to lower my reputation in the estimation of right-thinking members of the public).

I have made a formal complaint to the Club and requested a retraction of the discussion and a public apology be made to me but if that isn’t forthcoming I will consider legal action.  We simply cannot go round talking shit about people who have done absolutely nothing wrong.  Neither can we use people’s private communications without their express permission – the internet is full of people who have found themselves in very hot water as a result of sharing stuff they’ve seen online.

Morally, the result of this situation is devastating to me.  I try so hard to be a good person and I have been made out to be the villain in a situation in which I’m actually the victim.  However, that’s how bullying works.  Once you identify a bully and expose their behaviour the only recourse left to the bully is to turn the tables and deflect any negativity away from themselves and on to the subject of the bullying.  What amazes me is that anyone ever falls for this and can’t see straight through it.

The point to this post is to act as a reminder that we can’t go round talking shit about people without consequence.  We are not children and there are very strict laws in place to govern what we can and can’t do and say.  Even if we are talking about actual events we have to be very careful how we talk about them which is why writing ranty posts when we’re emotional is never a good idea, however justified we may feel.  As I said above, I was very careful in my choice of words and audience in my FB post and I think we all have to be aware of defamation laws before we open our mouths, either physically or on paper.  Luckily we have freedom of speech and expression laws in the UK but there are still limits to what you can say and how you can say it and we should never forget that when we gossip there is a human being with feelings on the end of our titillation.

Weekly roundup

This week has been physically tough.  My period arrived (I swear I’ll still need sanitary products when I’m dead cos Aunto Flo is showing zero signs of buggering off!) and I am currently on day 7 of a migraine.  My knees and elbows are having a pain flare for reasons unknown and I’m still so brain fogged/exhausted I feel like I’m drugged.  But other than that I’m good 😉

On Monday I took my Mum through to the city to visit the hearing aid clinic at the Hospital.  She wears two hearing aids but they simply won’t stay in her ears and she’s already lost one which dropped out as she went round the supermarket.  It turns out she has very narrow ear canals and even the smallest aid is too big, so they’re custom making her ones which sit inside the ear itself instead.  As my Mum rarely gets out of the house we made a day of it, having our lunch out and a tootle round Matalan as it’s all on the flat for the wheelchair and has a good sized disabled changing room.

The rest of the week I’ve been trying to organize repairs to my car port, the back of which is made of old wood which has totally disintegrated.  All was going fine until we discovered asbestos and then it was on to plan b!  When you have M.E. you barely have the energy to get dressed let alone for events to go belly up.  So now the job is much more complicated than I expected and will take twice as long – of course it will, because Mr Sod has it in for me.

As I wrote about in this post my Dad and I made a last minute trip to the Hospital in Newcastle on Friday.  I was expecting them to finally say his neuropathy was idiopathic (ie no explanation could be found) and to tell him he just has to learn to live with it, however they’ve said that idiopathic neuropathy isn’t usually progressive and severe like my Dad’s so they are still searching for a cause, which is great news but means yet more 180 mile trips to the Hospital for tests and appointments which nearly kills me and takes a week to get over.

Yesterday I found out I’d won two more trophies for my photography in an annual competition which involves all 52 camera clubs across the north of England 🙂  I genuinely wasn’t expecting them so am tickled pink.  However, my joy was momentarily marred by the news that a smear campaign has now been started against me by the bullies at my Camera Club who are saying I’m writing shit about my Club on Facebook.  It is blatantly untrue.  I have written one post on Facebook about their behaviour and the way they have treated me, in a measured non-ranty way and mentioning no names, but would never in a million years ever trash my club because I’ve loved being a part of it.  The sad part is, people who aren’t even on my Facebook and haven’t read the post are believing the bullies 😦  This is what bullies do when their behaviour is exposed – they deflect negativity away from themselves and on to the victim, who eventually ends up the bad guy.  That people fall for this bollocks is really fucking disappointing.  When I find myself questioning why this situation has come about I like to read this quote and remember it’s not about me, it’s about the bullies’ inner demons:

Today I am looking forward to meeting my bestie for lunch and a catch up, but first I am eager to take the mutt out for his morning constitutional.  Spring has officially sprung here in the UK and there is no prettier place on earth.  The hedgerows are covered in fluffy blossom, daffodils nod in the breeze, birds are busily nesting, I saw my first butterfly yesterday even though there is still a sprinkling of snow on the fells and as Bertie and I wander by the river, hoping to catch a glimpse of wild Otter, I am thankful every day to live where I do 🙂

 

 

Still searching

In 2017 my Dad was walking 6 miles up a mountain every week with his best mate.  He got a bit stiff afterwards but other than that he was in great nick for a man of 77.

In August of 2017 he caught a mild cold.  He passed it to my Mum and by September she was paralysed.  The cold had triggered Guillain Barre Syndrome, an auto-immune disease.  Looking back, however, my Dad was also affected by the cold and started having some leg weakness after his walks, along with chronic fatigue and ever increasing stiffness.

In December 2017 he was concerned enough to see his GP, who did some routine blood work and found a small IgA kappa paraprotein.  Paraproteins can be a precursor to lymphoma, however in the early stages they are classed as MGUS (monoclonal gammopathy of undetermined significance) so he is now regularly monitored.

In January 2018 he first saw the spinal team who ordered an MRI scan of his spine.  They found a narrowing of his spinal cord called spinal stenosis and referred him to the surgeons at the RVI in Newcastle.

We waited 8 months for our first appointment at the RVI, during which time my Dad deteriorated.  In June he had to stop walking the fells with his friend, but could still potter to the local shops and back.  He also started having dizziness & nausea spells, about one every two months.

His GP referred him to the heart unit, who found he had bradycardia (a very slow heart beat) when he slept but apart from that all was fine with his ticker.

His dizziness & nausea episodes increased over the next few months, until he had actual vertigo with prolonged projectile vomiting about every 2-3 weeks.  His hands had also periodically started cramping and going spastic.  His walking ability also continued to decline and by the time we saw the actual Spinal Surgeon in November 2018 I had to take him to the appointment in a wheelchair as he couldn’t walk from the car park to the Clinic.

The Surgeon said the stenosis in his spine was mild and couldn’t possibly be causing the severe weakness in his legs so referred him for an upper MRI scan and some nerve conduction tests.  The MRI was fine but the nerve tests showed severe sensorimotor neuropathy in both legs.

The Surgeon strongly suspected CIDP (chronic inflammatory demylinating polyneuropathy), an inflammatory auto-immune disease which eats away at the myelin sheath around the nerves and can be caused by viruses (like the cold that led to my Mum’s GBS).  He cancelled my Dad’s surgery as he said the nerve issue needed to be sorted first.  However, he didn’t refer us to anyone so we were left floundering alone in the dark.

My Dad was getting worse by the week, so in December I took matters into my own hands.  I found a neurologist at the RVI who specialized in CIDP, pinched his email address from a paper he’d written, and emailed him directly – frowned upon here in the UK!  However, he was very kind and emailed me straight back.  To cut a long story short my Dad was referred to the rapid access neurology unit and seen by a Neurologist on Christmas Eve.

She ordered a lumbar puncture, which showed raised CSF protein.  However, the protein wasn’t indicative of CIDP, so now they had no clue what was causing his severe sensorimotor polyneuropathy.

The Neurologist ordered a CT scan, as raised CSF protein can indicate cancer.  My Dad had this done at the start of February and every 2 weeks since I’ve rung for the results, which have never been available.

It is now April, 7½ weeks since his scan and 18 months since he first started to have problems with his legs.  We are no further forward and were so pissed off with being passed from pillar to post on the NHS and having to waits months and months for every little thing we made an appointment to see a private neurologist next Tuesday.  However, yesterday I decided to have one more go at getting my Dad’s CT results (to take with us to the private appointment) and discovered they were back but hadn’t been seen by the Neurologist yet – fuck knows when that was going to happen.

However, yesterday afternoon the Neurologist’s secretary rang to say that the Neurologist had now seen the CT scan and all was fine.
“So when is our follow up appointment?” I ask.
Secretary:  “Were you expecting a follow up appointment?”
ME:  “Well, being as though 18 months ago my Dad could walk 6 miles up a mountain and is now in a wheelchair, we have no clue what’s wrong with him and he’s receiving no treatment, yes I do think we’d like a follow up appointment!”  FFS!
So she slotted us in today, being as though the Neurologist was about to go on annual leave.  If I hadn’t rung yesterday to chase his CT scan results for the fourth time we’d still have been none the wiser by May!

So today I’ve driven another 180 miles to see the Neurologist, who to be fair is very nice and very thorough.  Here’s where we are:

  • She has no idea how much his spinal stenosis is contributing to his symptoms.  Do we go ahead with surgery nor not?
  • She was concerned my Dad may have arthritis in his hips and/or knees which is contributing to his pain, so we had all of those xrayed while we were there.  No results yet.
  • She has no clue what is causing his severe neuropathy.  30% of people have idiopathic peripheral neuropathy, ie no cause is ever found, however they don’t tend to have quickly progressing PN like my Dad so she thinks there must be an underlying cause.
  • As he also has a dry mouth and dry eyes she’s wondering about Sjogren’s Syndrome (another auto-immune disease which can cause neuropathy), so is referring him to a Rheumatologist.
  • In the meantime, she’s getting a second 2nd opinion from the CIDP specialist, just to check again.  She’s going to ask if it’s worthwhile doing a nerve biopsy to check if inflammation is present once and for all.  If it is, it might still be CIDP (it fits his symptoms more than any other diagnosis). If it isn’t we’re up the shittiest creek in Shitsville without a proverbial paddle.

So it’s yet more waiting, and testing, and waiting for the results – if we don’t all lose the will to live in the meantime!

 

Weekly roundup

Monday was a big day.  Not only did I have my scan, which thankfully showed that no cancer was present in my lymph nodes, I then had to come home to my local health centre for a smear test.  Now, I know they say smears are “uncomfortable” for a few minutes however that’s not been my experience.  I haven’t had children, nor had sex for a decade, and when she inserted the speculum it was a bit like trying to shove an elephant through the eye of a needle.  The burning, stinging pain eventually became unbearable and, being as though she couldn’t get the ginormous thing in anyway, we both agreed it wasn’t working.  Thankfully she had a smaller, old-style, metal speculum which she tried instead and this time it was successful.   This is what always amazes me about health care – that a one size fits all approach is used.  How can a 5ft 2″ size 10 women whose never had kids have the same size vagina as a 5ft 6″ size 16 woman whose had 3 children?!  It’s the same with just about everything.  They use the same size endoscopy tube on me as they use on a 6ft 2″ man and I know who feels like they’re choking the most!

Wednesday was the last competition of the season at my Camera Club.  As the bullies now make me feel so uncomfortable I hadn’t been for a couple of weeks, but I didn’t see why they should deny me the pleasure of my favourite competition nights, so with some trepidation I went along.  Most of the Club didn’t know I was leaving and that that would be my last night, so I told several people who were all totally shocked – not only that I was going, but why.  I received lots of lovely comments, and hugs, and to cap it all I discovered that not only had I won the advanced print league this year I’d also won the advanced projected image league too.  I know it’s a bit childish, but I kind’ve wanted to stick my middle finger in the air and tell the bullies to go swivel on it 😉  They have chased away the best photographer in the Club to a rival Club, which clearly shows they don’t have the best interests of their Club at heart and the fact they are all now on the committee, in fact one has put herself up for Vice Chair, stinks.

Toda is Mothering Sunday, so I’m taking my folks out for lunch.  For the past several years I’ve absolutely dreaded events like today, as my Mum would be drunk before I even got to the house and either be finding everything hilarious so having a conversation over lunch would be impossible, or being a total bitch so I’d have a knot in my stomach the entire time as she whinged about everything and constantly bullied my Dad.  These days she isn’t drinking quite so much, but she is still drinking and I have no clue how inebriated she will be when I pick her up.  I’d rather be doing something else it has to be said.

I am covered in hives from the stress of recent events, am peeing constantly and not sleeping – all signs my histamine bucket is full to overflowing.  My armpit, and elbow, are still swollen too and now I know it’s nothing sinister I’ve written to my GP and asked her for a referral on the NHS to a mast cell specialist.  Just because I have a rare disease and live in a rural area doesn’t mean I should receive no health care!  It’s been 6 years since I paid to see Dr Seneviratne for my diagnosis and I haven’t had any follow-up care at all, as in 2013 there were no NHS specialists seeing MCAS patients and I couldn’t afford any further appointments with Dr S privately.  However, things have definitely moved on and now there are some NHS immunologists who have taken an interest in us weirdos and are willing to see us.  Sadly, however, there are still none anywhere near me, so I’ve chosen Dr Ravi Sargur in Sheffield who seems to have a good reputation in the MCAS community.  Sheffield also now do mast cell testing on the NHS and have a dietician who’s versed in low histamine food 😮 .  Of course, it will take several months for my local health authority to agree to fund the appointment then for me to go on the waiting list to be seen, and it’s a 7 hour return train journey for me, but I don’t seem to have any other option – when your limbs start swelling up for no good reason it’s definitely time to get checked out.

Right, I must get up and cracking.  The clocks went forward last night so I’ve lost a whole hour.  I’ve recently been waking up every morning at 5.30am, so I thought it would be brilliant that it would actually now be 6.30am and at least the sun would be up but no such luck…………..I woke at 4.50am instead and couldn’t get back to sleep 😉

Treating the beloved child

Most of the time I live a happy enough life.  I was going to say under the circumstances, but actually you can be happy regardless of circumstance – well, so long as the circumstance is tolerable.  Finding happiness in a war-torn country, or if you fear for your life, or are living on the streets or in abject poverty is asking too much of anyone but thankfully I’m in none of those situations.  In fact, I have much to be thankful for.

I’m not super human though and there are times I feel overwhelmed and wake up in a morning wondering what the fucking point to it all is.  This past month has been one of those times.  I am so exhausted I can barely function.  I’ve been worried sick I may have cancer (which, let’s face it with my drug history wasn’t going to be treatable), yet my dog still needs walking, feeding, grooming and health care, my parents still depend on me for every little thing, the bills still have to be paid and I am stony broke, my hormones are playing Jekyll and Hyde and I have put up with over a year of being bullied by a bunch of little bitches who want to destroy the only good thing in my life which is my photography.  It’s a lot to be dealing with and while I take care of everyone, and everything, else there is no-one ever taking care of me.

I’ve felt tempted to just chuck in the towel and sink into the depression which has been trying to suck me in for some time now.  I’ve been dealing with shit for decades and I’m tired, not to mention achingly lonely.  But then there’s a side to my character which refuses to give in.  It shouts at me to stop being an ungrateful pussy and wallowing in self-pity.  Are you homeless?  No!  Are you penniless? No!  In physical danger?  No!  Are you bedridden?  No!  Terminally ill?  No!  Well shut the fuck up moaning then and count your blessings.

I am blessed to have my little dog.  My faithful companion and cuddle buddy.  I have friends who are simply too unwell to have a pet, or living in accommodation which doesn’t allow pets.

I am blessed my parents are still alive, even though they drive me crazy and my Mother can be a bitch.

I have a lovely home, even if I need new windows and my front door doesn’t shut properly.  It’s mine, no-one can chuck me out, it’s warm, it’s dry and I have satellite TV and reliable broadband 😉

I do not have cancer 😀

I am not bedridden.

I am not bankrupt.

I have lovely, supportive friends.  They’re few in number, but I cherish them for the very fact they are few in number.

It’s true I have no-one caring for me, so I have to care for myself.  If my child were living this life what would I currently do for her?  I would wrap her in a blanket on the sofa, feed her peanut M&Ms and Pringles, we would rent a movie, cuddle up and I would tell her she is beautiful, she is worthy and tomorrow is a bright new day full of possibilities.  I feel better already.

“Treat yourself as your own beloved child” – Pema Chodron

 

 

 

It’s good news!

I had my ultrasound today and the doctor could find nothing wrong with my lymph nodes, either in my armpit or my elbow which effectively rules out cancer (well, that and my recent normal blood results).  I honestly felt sick all the way to the hospital as I was convinced they’d find something sinister so you can imagine the smile on my face on my way out and the relief that all seems to be fine!

I asked him what the swellings might be and he said “could be bone, could be soft tissue – we can’t see either on ultrasound”, so I definitely need to speak to my GP about where we go from here as swellings in your armpit obviously aren’t normal.  Plus, I have been feeling properly rubbish since before Christmas with 24/7 nausea, god awful stomach and bowel pains (nearly called an ambulance last night as I was bent double and the sweat ran off me) plus months of I’ve-just-reached-the-summit-of-Everest-without-oxygen exhaustion.

I was amazed when the doctor performing the scan had heard of hEDS and mast cell disease – 10 brownie points 😉

I’ve been having a rough time emotionally with the peri-menopause recently – crying for absolutely no reason and feeling really quite depressed, which as you know isn’t like me at all – so I honestly feared for my mental health should the news have been bad.  The thing that’s kept me going this past 2 weeks is all the lovely messages I’ve received from my friends and you my fabulous followers, which have meant the world.

God, I miss drinking!   If my mast cells would let me I’d be downing a bottle of plonk and getting ever so slightly sloshed this evening!  As it is, I’m treating myself to fish n chips, even though I will probably flush for two hours afterwards and spend the rest of the night in stomach hell 😉