Author Archives: Jak

Taking the Pee

For the past decade whenever I have blood tests and my kidney function is checked it is found to be abnormal.  Adults of my age should have a GFR of >90 and mine is consistently in the 70s – I am therefore classed as having stage II chronic kidney disease.  Despite that, my GP never mentions the abnormal result.  When I’ve picked her up on that she just says “oh, it doesn’t mean anything – you were probably dehydrated the day you had the test done”.  What, every time?!

As I said in a recent post, I’ve just had an email off a friend who has ME and strongly suspected MCAD and hEDs.  She’s just had her kidney results back and they are also abnormal.

Someone on the ME Association’s Facebook page recently asked a question about peeing.  She said she wees for England and is that normal in ME?  Well, from my experience “yes”!  I pee constantly, sometimes going 3 times in an hour, and I don’t mean I do a little trickle – I mean I PEE.  Like a race horse.  I have no idea where all the fluid comes from.  My concern is that I have piddled so much in the last 20 years I am literally exhausting my kidneys and one of these days they will lie down with their tongue hanging out and die like an overworked donkey.

Before going on a low histamine diet my peeing was out of control.  I often got up 6 times in the night to urinate and during the day was never off the loo.  There was/is no pain involved, I just peed and peed and peed.  After going low histamine, however, this improved substantially and now I only wee in the night if my histamine bucket is high.  But I do still wee much more than your average human.

When you have hEDS you can definitely get urine retention and it’s easy not to empty an overly-stretchy bladder properly, but that still doesn’t explain the sheer volume of widdle.

These days, if we have a symptom like this we would expect to go on Google and find out the cause, only of course no-one looks at this stuff when it comes to ME (they’re too busy concentrating on ‘fatigue’) and research into MCAD and hEDS is still so scarce that nothing much pops up.  It’s definitely something I’ll discuss with the MCAD doctor if/when I get to see him.


Weekly roundup

I’m still not over my virus, though I am feeling stronger in myself.  The cough lingers and I’m still unable to eat much – I feel really hungry, take one mouthful of food and want to throw up 😦

There is no conclusion to my complaint re my Camera Club.   My friend now wants to make a complaint against them, as not only did a Club member print off and share my private Facebook comment about being bullied they also printed off all my friends and family’s comments on that post which were discussed and judged by a committee of people they don’t know from Adam.  My friends and family are people totally unconnected to the Club – some of them live in another country for crying out loud.  It’s outrageous.  I have now been told by the Club that my behaviour has caused so much ill feeling that the situation is not resolvable.  I’ve been bullied, slandered at a public meeting, my private conversation, and that of my friends and family, has been shared with all in sundry against my express written consent and *my* behaviour is deemed unacceptable.  They even want me to apologise in case my saying that I’ve been bullied has upset the bullies.  It would be laughable if it weren’t so serious.

I’ve been invited to a winter wedding this year.  I know it’s 5 months away but I’ve been thinking about what to wear.  It snows here in the winter and Churches can be bollock freezing cold, so I wanted something warm with long sleeves.  Have you tried women’s clothes shopping lately?  Apparently us girl don’t feel the chill and are happy to wander around in winter in skirts above our knees, sleeveless tops and plunging necklines, and while I might have risked hypothermia when I was 20 I’m not prepared to get pneumonia now I’m 50.  Eventually I found a Chinese company on Etsy who make beautiful wool clothing made to measure.  I decided on this plain grey dress, which for the wedding I thought I’d spruce up with a little fur collar and cuffs and a white hair fascinator, but which I can also wear plain to other events.  It was a risk, obviously, as I had no clue if the dress would be as pictured or would fit me but going on the 5* rave reviews I took a gamble.  And it paid off.  The dress arrived this week and is gorgeous.  Beautifully made, excellent quality, fully lined and fits like a glove (they ask for loads of measurements plus your weight and height – I was mortified to find I now have a 30″ waistline and if I’m not careful I’ll soon be wider than I am tall!).  I even got it with £20 off in a flash sale, so I managed a quality made-to-measure dress plus postage from China for £68 – I’ve paid that for a jumper in Debenhams before now!

I need new glasses.  I started wearing distance glasses for driving and watching the telly when I was about 30 and reading glasses when I was 45.  I’d love contact lenses, but my eyes are so dry and irritated that I can’t get away with them and due to my migraines and weird head symptoms vari-focals just make me disoriented.  So I now have 4 pairs of specs: 1 pair of distance, 1 pair of sunglasses for driving, and 2 pairs of readers – I keep one at home and one in my handbag.  All 4 are currently scratched and knackered so I’ve had to bite the bullet and get new ones.  Despite the fact I have such a small head I have to wear glasses for children, and there was a buy 1 get 1 half price offer, it still cost me £380.  Jaysus, is it any wonder I never have any money!!!

Right, time for breakfast – whether or not I’ll manage to eat it or it will end up in the dog is yet to be decided 😉


Weekly roundup

Sorry I’m not writing much at the mo.  I’ve been really poorly and stressed to the eyeballs and simply not doing anything to write about.

The injustice of what’s happening at my Camera Club consumes me.  I am a very honest and true person and I can’t abide unfairness.  It strikes at the very core of what makes me me and I will fight to the bitter end to make the Club admit they’ve treated me badly.

Carrying on the theme of injustice, I had an email from a friend this week.  I love hearing from her, not only because she’s fun and intelligent and kind but because it doesn’t happen often.  She’s been bedridden/housebound with M.E. for over two decades and while in that time I’ve miraculously improved she, heart-breakingly, has not.  She struggles to speak and is in constant horrendous pain yet is allergic to just about all medications so can take nothing to help.  Eating is a daily battle and she weighs 5½ stones (80lbs).  Her GP surgery have basically given up on her and she’s too ill to travel anywhere else (when you live in  rural area there is one GP practice and that’s it).

We both know she has hEDS and most definitely needs to be fed artificially, but of course travelling to access an EDS savvy Rheumatologist is out of the question.  She also, most certainly, has MCAD but again getting diagnosed is impossible – she can barely leave her bed let alone travel to Sheffield or London.  I know, though, that if she could get diagnosed with hEDS her care would improve.  When you have M.E. no-one wants to know – there is still a huge stigma attached to the disease and you’re still treated like some kind of nut job whose symptoms are psychosomatic, and that won’t improve until a diagnostic test can be found.  There’s no diagnostic test for hEDS either, and no evidence it’s a genetic disease, yet we’re all believed without question and each symptom treated accordingly.  It makes me LIVID that these two diseases are looked upon so differently.

She has lived like this for over twenty years – her entire adult life.  She has suffered the tortures of hell but she is left to just get on with it, just as I was when I was bedridden.  My dog gets better care than she does and if I think about the injustice of that too much rage consumes me.

Of course, injustice in endemic in our society.  I live in the 5th richest economy in the world yet 8.4 million people in the UK are so poor they are struggling to afford to eat – that’s equivalent to the entire population of London.  And yet the UK wastes 1.9 million tonnes of food each year, of which 250,000 tonnes is still edible, and we can afford a Brexit bill of £100 billion while our kids go to school hungry.  We should all be protesting in the streets in our millions that our citizens are starving, but we are so used to unfairness that we just accept it.

I hope I live long enough to see scientists find the cause of M.E. and for my, and my friends’, decades of suffering to be acknowledged.  In the meantime I will fight my little corner of injustice with my Club with every ounce of strength I possess and can only hope the fact I have right on my side will influence the outcome.

Fecal Attraction

It’s not always easy to live with chronic illness.  I know that sounds like a blindingly obvious statement, but actually there’s a lot of pressure to be positive, accepting, calm yet still fun, both from other people and ourselves.  It’s fucking exhausting and if grades were being awarded for handling chronic illness well my entire family would currently get a big fat U.

Yesterday I had a total meltdown.  The lergie is still lingering and I feel like death.  I’ve lost 6lbs in ten days because I can’t eat, I’m still coughing my head off, I’m still not sleeping, and ghosts have more colour than I do. Add to this my period and the horrendous stress from my Camera Club and I am barely functioning.  Despite that, I’d agreed ages ago to take an elderly friend to the city for a hospital appointment.  He has no family of his own locally, his wife died 2 years ago, he has prostate cancer, is in heart failure, is diabetic, has had 2 serious spinal surgeries and can barely walk due to neuropathy in his legs.  He is also abjectly lonely, so not only did he want to go for his appointment he wanted to go for lunch first, making the day 2 hours longer than it needed to be.  But I feel sorry for him, so we went.  I was gone for 5 hours altogether and felt so ill when I got back to my parents to pick the dog up I burst into tears the second I walked through the door.  It all just felt too much.  The injustice of how I’m being treated at my Club, my illness, getting a virus on top of everything else, my periods never ending and having the responsibility of my two sick parents, not to mention my sick friend, is too much for any chronically ill person and I honestly felt like my mind was going to snap.

Luckily, and for once, my Mum wasn’t drunk and she came and hugged me.  I think it’s the first time she’s hugged me like that in about 6 years and it felt nice.  My Dad was also lovely, though embarrassed and didn’t know what to do 😉  I felt better for having a good bawl though am still weepy today.

This afternoon I had to pick Bertie’s gabapentin medication up from the vets, so as I was already in town I called in at my parents’.  It was clear from the outset they were both having a bad day.  My Dad has been irritable all week, which is really unlike him as he’s usually so happy go lucky.  My Mum is quite often tetchy but today she was obviously on the edge and between the two of them you could cut the atmosphere with a knife.  I honestly thought I would have a nervous breakdown if they bickered just one more time.

I eventually got home, had a nice bath and managed to drink half a cup-a-soup without wanting to puke, which is my biggest food-related achievement of the week so far.  Feeling slightly stronger, I rang my Mum and asked why things were so strained.  She admitted she’s just sick and tired of being sick and tired, and I totally get that.  Boy, do I get that.  My Dad is grumpy and particularly confused, and Mum just can’t cope with it when she’s also feeling down and frustrated.  The pair of them are just really struggling with being ill and all the confines and pressures that brings with it.

I told her not to be so hard on herself.  We’re not super human and it’s normal to feel fed up and to get narky sometimes.  It’s the unfairness of chronic illness which seems to get to all of us.  My Mum has worked like a dog her whole life; my Dad is a lovely person who would do anything for anyone; and I hope I’m a kind, loving and giving citizen, and yet all this crap has befallen us.

Society often talks about karma and we’re brought up with the implication that if you’re a good person good things will happen to you.  It’s bollocks.  Bad things happen to good people all the time.  In fact, I’m convinced that the nicer you are the more shit tends to head your way – maybe there’s some law of fecal attraction or something.  There is not an ounce of fairness in the world – you could wander the sewers offering food to starving rats and the bastards would bite you the second they were strong enough.  Being a good and kind person takes work and I’m not sure the rewards are worth it.  Maybe in my old age I’ll become a law breaking, drug injecting, gin guzzling don’t-give-a-crap-bitch, then with a bit of luck I’ll win the lotto and find Mr Right.  I’ll need to go get a ‘Be a bitch for dummies’ book off Amazon though, cos having been a good and kind person my whole life I wouldn’t know where to start 😉



Weekly roundup

What a god awful week.  I’ve barely eaten or slept due to the stress of what’s going on at my Camera Club, which is worse than I thought.  I’m not going in to detail (I’ll tell you what’s happened when it’s over) but I now need to consult a specialist solicitor who deals with privacy and misuse of private information.  And all because I said privately to my friends on Facebook that I was leaving my camera club because I felt I’d been bullied.  That is ALL I said.

Which leads me on to victim blaming.  I have been made to feel so uncomfortable at the Club I’m leaving yet *I* am being blamed for causing discontent  at the Club by saying this privately to my friends.  One of these “friends” has maliciously shared my private conversation with all in sundry, knowing it would cause problems for not just me but the whole Club, and *I* am being blamed for having this private conversation.  No mention is made of the bullies, and no mention is made of the malicous person’s immoral (and illegal) actions.  It’s so much easier to blame the victim than tackle the bullies.

In amongst all this horrendous stress and upset, I am still suffering with the worst lurgie I’ve had in years (coughing, streaming, aching all over and feeling like death warmed up) and as if all that weren’t bad enough my period arrived out of the blue.  I can barely function.

We’re having a brief heat wave here in the UK, which is very welcome after a long winter.  I thought about putting my shorts on to get a bit of vitamin D on my skin, but then I saw the state of my legs and thought better of it.  This is what “easy bruising” due to hEDS looks like – I have no clue how any of these bruises happened.

Yesterday was Easter Sunday and my Mum decided she wanted to go up the Lakes for lunch.  It was like hell on earth.  One tiny little rural village was over-run by a thousand men in shorts with pasty white legs, harassed women, screaming children and barking dogs and there wasn’t a car parking space for miles.  The cafe was so packed we couldn’t hear ourselves speak (both my parents wear hearing aids and struggle with background noise) and the air was heavy with the scent of petrol fumes and the deafening sound of motorbike engines.  I’ve never been so glad to get home in my life.  I usually only ever go up the Lakes in the winter when all the tourists have left and yesterday reminded me why!

I only learned this week that Yasmina who was known as the Low Histamine Chef and wrote the website ‘Healing Histamine’ died last September at the age of 43 from breast cancer.  I was truly shocked and saddened at the news and my heart goes out to her friends and family.  It reminded me to live each day to its fullest as we never know when it could be our last.

The only bright spot on my horizon this week came yet again from my photography – what would I do without it?!  I’ve won another gold medal at an International Salon, this time in Scotland.  My friends joke I’m going to need an extension putting on my house for all my awards and there may be some truth in it – at the very least I am going to need a much bigger shelf 😉

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……. 😀

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.