Weekly roundup

A surprising lack of response about my thoughts on the Persecution of women, which appears to back up my point that we are all so conditioned to it that it’s considered normal.  I am so outraged when I think of what women round the world go through every day of their lives that I want to scream but my anger obviously isn’t massively shared. I wrote about the issue on my Facebook page and barely received a single like or comment. I did, however, have a comment from a man I don’t know from Adam.  He laughed that I’d used the word “persecution” and told me Jews, Blacks and Gays said “hi”.  For a start he doesn’t know my religion and I could be Jewish.  I could also be gay or married to a black man, so his level of assumption was astounding.  And maybe he’s forgetting that half the Jewish race are women, half the black population are women and homosexuality isn’t the sole confine of men.  He then accused me of being sexist because I pointed out that he was male and couldn’t know much about the experiences of women of any race, orientation or religion.   It’s male attitudes like this that have contributed to the persecution of women and he can’t even see it.  When boys  under the age of 6 are routinely taken into the bush or desert to have their penis chopped off without anaesthetic or pain relief and their bum holes stitched up so they can barely poop for the rest of their lives (the girl my parents sponsored in Africa was a victim of female genital mutilation), or when men are routinely sodomised by their wives or parents, or sexually assaulted by some random stranger (as I was at the age of 11), or when they are deemed a criminal and incarcerated for having sex with their girlfriend and getting them pregnant (as many Irish girls were right up until 1996), or when they have acid chucked in their faces, or are stoned, or bricked up behind a wall and left to starve to death for speaking to a girl they like then they can discuss with me how women aren’t persecuted and not until.

On to less upsetting topics.  It was my Dad’s 78th birthday this week and I took him and my Mum out for lunch.  Considering he was planning his Mum’s funeral he had a lovely day and I know how lucky I am that both my parents are still alive, even if some days I do want to strangle my Mother.

My cleaner was on holiday this week so I had to use up precious energy changing my bed and scraping the muck off my floors caused by my furry child.  She is worth every single one of the pounds I pay her because there is no way on earth I’d be able to keep my house nice without her.  She also usually cleans the inside of my car, which I had to do myself because it was going in for its MOT and looked, and smelled, like the bottom of a swamp.  I was flippin crippled for the rest of the day from having to bend to hoover.  My Mum’s cleaner is also on holiday, so not only did I clean my own house I cleaned my parents’ house too which couldn’t really be left because of all the visitors they are having due to arranging the funeral.  Consequently I’ve got nothing else done all week because I’ve been too knackered and in too much pain.

And speaking of pain, since my period ended ten days ago I have had wicked stomach and bowel pain that has, at times, left me feeling really nauseous and unable to eat.  This is another reason I wish the actual Menopause would hurry itself along because I’m worried about the increasing severity of my endometriosis and the irreversible havock its wreacking on my internal organs.

I’m having a small afternoon tea party for my birthday next month and spent a very nostalgic evening last night going through my music collection to put together a playlist.  I hadn’t listened to some of the tunes for 30 years, yet still knew every lyric.  I’ve gone for a mixture of genres as the people attending the party will be a mix of ages, though the only rock song I’ve included is ‘Since you been gone’ by Rainbow, which was an anthem of my teenage years to which I happily head banged in my fringed leather jacket til I gave myself a stonking great headache – it really is a wonder we weren’t all brain damaged!

My second outing with my new photography hide to catch the Kingfisher yielded results and I’m tickled pink 😀  It’s not the best photo in the world but, after 4 years of trying, I’m just thrilled to get a picture of this tiny, very hard to capture, most beautiful of wild birds.

Speaking of photography, for those of my lovely readers who have been asking I do sell my photos online internationally through Redbubble.  You can buy anything from cards to duvet covers, ipod skins to hoodies and all sorts inbetween by clicking on a picture you like then choosing ‘available products’ from the tabs underneath.  I’m currently adding my latest pictures so bear with me, as it does take up a lot of time and energy and I have precious little of either.  It constantly amazes me that someone in America is sleeping beneath a duvet on which sits a photo of my fabulous Bertie, or that someone is currently walking round in leggins or carrying a phone with a photo on which I have taken.  Me!  Sat here in my bed.  I ❤ the internet.

 

 

 

 

Persecution

I was having a chat to my Mum the other day and I had a light bulb moment.  One so huge I couldn’t believe I’d reached the age of 50 without giving it a second’s thought and it was this:

Women are the most persecuted people on the planet.  Bar none.

It seems so obvious yet it had never before crossed my mind.  We have been stoned, executed, tortured daily in our millions by our spouses, bricked up behind walls, raped regularly (usually by our spouses), imprisoned (often by our spouses), kept as ‘chattles’ (ie owned), denied basic human rights, denied the right to vote, denied a voice, denied education and kept in poverty not to mention domestic slavery for millennia.

Here in the West we think of the persecution of women as being either historical or something which happens elsewhere, yet it’s happening right here and right now in every country across the world. Even in good old Blighty. The recent rise in human trafficking predominantly affects women who are sold as both sex and domestic slaves but it doesn’t even really make the headlines. The case of the Rochdale paedophile ring recently shown in the tv drama Three Girls highlights very well that women are still blamed for their own abuse even here in the UK.  Women are still being paid less than men for the same job but apparently it’s our fault.  Working mothers are predominantly the ones who take days off to look after sick children or to take their kids to the dentist or doctor like their work is unimportant compared to men’s, and full-time working mothers still do the majority of child care in the home.  How often does the father pack the children’s suitcases when you go on your hols?

Women are seen as ‘weak’ because we are more emotional than men.  We can’t just be seen as different, we have to be portrayed as ‘less than’ and the only way women can rise to the top in our society is to act like a man.  Even though men have, historically, made an absolute sodding mess of running the world they are still seen as somehow superior and their lack of nurture and empathy as a strength when it is anything but.

I’m currently being financially persecuted because I am a disabled woman. The recent change to the pension age for women in the UK has discriminated against me yet I can find absolutely no-one who will take on my case. Not only that but the Equality Act actually allows the discrimination. The very law which exists to ensure everyone is treated equally allows me, as a disabled woman, to be treated differently to everyone else but….hey….it’s fine.  In fact, so dismissed has my discrimination been that 11 out of the 11 Solicitors I’ve contacted to take on my case haven’t even bothered to reply to me, not even a bog standard automated email.  Mind you, neither did the Women & Equalities Commission, Lilberty nor the Shadow Pensions’ Minister (who is female).  Women are so conditioned to our inequality that I’m actually made to feel like I’m whining.  Why can’t I just play nice and accept the situation?  Don’t I know how much it would cost to legally fight for my right to be treated the same as a man?!

This morning I briefly wrote about this subject on my Facebook page and my male cousin, the father of 3 daughters, commented “but Jak, I believe women shouldn’t have been given the vote….or car keys!”  Of course he was joking, but I bet he wouldn’t be laughing if his 23 year old daughter had been stoned to death by her husband, or his 17 year old daughter had been raped walking home after school in winter then been blamed for walking alone in the dark and not only that for doing it wearing a skirt (like walking the street wearing whatever the hell we like without being attacked shouldn’t be a fundamental human right).

Our children are quite rightly taught in school about persecution of peoples. About the horrendous Holocaust and the equally horrendous African slave trade. Yet nothing, not a jot, is taught about the biggest persecution of all…….that of women.

What’s the hold up?

I guessed I had Mast Cell Activation Disorder (MCAD) in 2012 and that I’d had it from birth, almost certainly as a result of also having Ehlers-Danlos Syndrome (people with EDS are massively more at risk of having mast cell disease than the general population) but getting it confirmed was a nightmare.

Looking for help and information I joined the, then, email group UK Mastocytosis as I couldn’t find any UK groups which dealt with MCAD, and amazingly discovered a dozen other women on there who also had EDS and MCAD.  Naturally threads opened up about these two diseases but this didn’t go down well with the rest of the group, who all had Mastocytosis not MCAD and none of whom had EDS.  I’d already started my blog, so decided that if it wasn’t acceptable for us to discuss EDS-related mast cell issues on UK Masto I’d start my own little email group through my blog where we could discuss it.  Seemed perfectly reasonable to me and at least we wouldn’t be upsetting or bugging the people who didn’t share our diseases.  So I wrote to the people off UK Masto that I knew had both illnesses and invited them to join.   For reasons I can’t work out, one of the women I invited forwarded my email to the (then) chair of UK Masto telling her I had started this little email group and I received a not exactly pleasant email off the Chair which resulted in me leaving UK Masto.  So we weren’t allowed to discuss EDS and MCAD on UK Masto, but weren’t supposed to discuss it outside UK Masto either.  To say I was confused dot com over events at the time is the understatement of the year and I still to this day don’t know why anyone on UK Masto took offence at me starting a tiddly tiny email group for a dozen women with diseases they didn’t have and didn’t want to discuss in any event.  What I did learn from the debacle, though, is that at that time in the mast cell world MCAD wasn’t really considered a ‘proper’ disease, unlike Mastocytosis which was a ‘proper’ disease.  I think the hoohaa was discussed after I left the group and thankfully resulted in changes and I know people with MCAD who’ve joined the group since and found them wonderfully helpful which is great, but it feels a bit unfair that I had to be the casualty left out in the cold particularly as, at that time, I still hadn’t received a diagnosis and was horrendously poorly, terrified and alone.

Getting a diagnosis of MCAD in the UK five years ago was almost impossible.  UK Masto had a list of Consultants round the country who dealt with Mastocytosis which my GP contacted, yet none of them saw patients with MCAD.  One of my lovely blog readers finally told me about Dr Seneviratne down in London, but he wasn’t funded to diagnose or treat MCAD on the NHS.  The reason for this is that diagnostic criteria haven’t been agreed upon and because of this MCAD isn’t recognized by the World Health Organization and therefore classed as an ‘official’ disease.  And if it doesn’t exist we can’t be suffering from it!  As I’m skint I could only afford to see Dr Seneviratne privately for my diagnosis and haven’t been able to see him for any treatment or follow-up care because I can’t afford to.  It’s unacceptable.  We pride ourselves in this country on health care being available according to need not ability to pay and I can’t believe that in Britain in the 21st century this situation is being allowed to continue.

There have thankfully been advancements in the MCAD world in the 4 years since my diagnosis, due solely to a handful of dedicated Doctors and Researchers particularly those working in the Ehlers-Danlos field who found that as many as 1 in 10 of their patients had mast cell issues.  In fact, in the recently updated EDS diagnostic criteria there is an entire chapter dedicated to MCAD and a book has now been written on the disease yet it is still not recognized by the WHO so still can’t be treated on the NHS.  What’s the bloody hold up?!  It’s been studied for over a decade now, and proposed diagnostic criteria were written as long as 7 years ago.  I can’t for the life of me work out why there isn’t more urgency to get it put on the map so that patients in the UK can be diagnosed and treated.

It’s seems to be a Catch22.  According to our Government it doesn’t exist.  Consequently we patients have no voice.  But how do we gain a voice with no official body shouting for us?  As usual it will be America who paves the way and we might trail along behind them in ten years time, though I can guarantee there still won’t be diagnostic testing available in the UK as NHS labs simply aren’t capable of storing samples adequately.  As a result it will be a guessing game as to who has MCAD and who doesn’t based on symptoms and people will be diagnosed who don’t actually have it which will muddy the waters in terms of research and treatment.  A disaster in the making if ever there was one, yet we patients are powerless to do anything about it.

There are a couple of NHS Consultants who now see suspected MCAD patients but, as I mentioned above, they don’t do any form of lab testing and diagnosis is based on history and symptoms.  It’s better than nothing but no-where near adequate.  Dr Seneviratne still only sees patients privately because he does insist on lab testing, which of course isn’t available through the NHS.  And in amongst the confusion and inertia are hundreds if not thousands of frightened, bewildered, untreated and very sick patients left floundering alone in the dark.

 

 

Rural health inequality

I’ve lived in both a city (Wolverhampton), a market town and a rural village and there is no doubt about it – people who live in the countryside are discriminated against on every level.

A good friend of mine lives in London.  There are no less than 3 hospitals within a one mile radius of his house.  I live in Cumbria and my nearest hospital is 30 miles away.  If you need more specialist services, like treatment for childhood cancers, female cancers, heart, lung or spinal surgery, or allergies my nearest hospital is 90 miles away.  There is no public transport in my village and it is impossible to survive without a car.  If I wanted to visit my local hospital via public transport, I’d first have to pay £15 for a taxi to my local town, then catch the train to the city then hail another taxi to the hospital……and back again, which would literally take all day.  When you’re really poorly the effort of making the journey to a hospital makes you feel more ill than the ailment from which you suffer and one of the reasons I barely ever saw a Doctor during my ten bedridden M.E. years – I was simply too sick to get there.

Can you even imagine what would happen if Great Ormond Street, the Royal London and Guys all moved to Cheltenham or Ipswich and it took Londoners a taxi ride, changing trains 3 times and another taxi ride to get there with a sick child, a cancer patient or a frail elderly parent?  It’s unthinkable, yet rural people are expected to just get on with it and not make a fuss.

If you’re unlucky enough to be admitted to hospital as an emergency, and go in an ambulance, you have absolutely no way of getting home again.  My neighbours, both in their seventies, recently had this experience and were discharged from A&E at 3am, in their pyjamas.  They then had to hail a taxi to bring them the 30 miles home which cost them nearly £80.

When my Mum had her lung surgery over in Newcastle my Dad and I visited her for ten days.  That’s a 180 mile drive every single day, the cost of a full tank of petrol and an £8 parking fee not to mention meals.  It cost a small sodding fortune and I have no idea how anyone on a low income manages (my Dad paid for everything because I couldn’t afford to).  After discharge she then spent 2 weeks in our local hospital, where we visited every day.  A 60 mile round trip, petrol, meals and parking fee.

Following having half her lung removed, if we’d lived in the city my Mum would have been offered a 7 week rehabilitation programme with a team of specialist lung nurses and physios to get her up and moving again.  Only she lives 20 miles up the road in a town where no such programme exists so she was just left to get on with it.

As a Carer now for my parents I visit them 4 days a week.  This journey alone costs me £80 a month in petrol, which is a huge chunk out of my small income, not to mention the cost of buying, insuring, MOTing, servicing and maintaining a car.

There are 2 specialist centres for people with Ehlers-Danlos syndrome in England.  One is in London, 300 miles away from where I live.  The other is in Sheffield, 124 miles away which takes nearly 2½ hours in a car (there is no direct train).  It’s not do-able when you’re as ill as I am, especially if you need to go regularly and not merely as a one-off appointment.

I received an email from one of the EDS charities this week offering for me to attend an event “near you”.  Great, I’d love to!  Only it was in Leeds, 100 miles south.  Birmingham is 100 miles north of London but no-one would ever suggest that Birmingham is “near” London FFS!  The Lodon-centric attitude in this country drives me nuts – it’s as if nowhere else exists.  None of the conferences are ever held north of Birmingham, when they should actually be held in either Carlisle or Newcastle – at least that is the middle of the UK and would enable people from Scotland to attend.  But of course it’s a long journey to make from London, and the trains to get from London to Newcastle are dire, so no-one ever bothers.  Who cares what happens in “the north”?  It’s not like any of us matter.

I rely totally on the internet – it is my lifeline to the outside world.  It’s how I order repeat prescriptions, book doctors appointments, do all my banking, pay bills, do my grocery shopping and all other shopping.  Yet until last year my broadband connection speed was 6mbps and regularly cut out.  My mobile signal is no better and I can’t make a call at all from downstairs and only get 2 bars signal at most upstairs.  Which means not only do I have to pay for a mobile contract every month I have to keep paying for a landline contract every month too which doubles the cost of my broadband and phone bill.  My one luxury is having Sky tv who offer free broadband and phone services for their customers…….unless you live in the country where it isn’t “cost efficient”, so we have to pay an extra £20 a month for broadband whereas if I lived 7 miles away in town I’d get it for nothing.

Our nearest Hospice is a 60 mile round trip away.  Can you imagine being in your 80s or 90s and wanting to visit your dying spouse every day?  How would you get there if you can no longer drive?  And even if you could drive, how would you afford the petrol if you lived on the state pension?

The discrimination doesn’t stop even when you die, because guess where our Crematorium is?  That’s right, a 60 mile round trip away.  So you have the Church service locally, then everyone has to drive 30 miles to the city for the cremation, then you all have to traipse the 30 miles back again to have the ashes interred in the cemetery.  It’s outrageous to put grieving families through that and doesn’t half bump up the cost of a funeral because rather than hiring the funeral director’s staff and cars for an hour or two you’re basically looking at the whole day.

There’s a myth that everything costs less in “the north” and it’s the biggest fib ever told.  In some parts of “the north” houses might go for a pittance just like they do in some parts of the south, but here in the Lake District an average 3 bed house costs anywhere from £300,00-£450,00 which is 19 times the average local wage.  We hear all sorts on the news about the extortionate cost of housing for Londoners, yet nothing about the equally out-of-reach cost of houses in Cumbria.  A loaf of bread and a pint of milk costs the same in Tesco in Carlisle as it does in Tescos in Maidstone, yet the average salary in Carlisle is £18,000 while the average salary in Maidstone is £25,000 – guess who’s going to be worse off?

Maybe all us country folk should just move to the city.  Only of course then there would be no clean drinking water, cities not being known for their reservoirs.  No-one to grow our food, not that that’s going to be important after we leave the European Union.  No-one to milk our cows.  No-one to sheer our sheep for their wool.  No B&Bs or hotels to book into for our holidays.  No electricity because there would be no-one manning nuclear power stations which aren’t located in cities (who cares that rural children get leukaemia from the waste they produce).  No-where to film Downton Abbey.  No-one taking care of our beautiful green spaces or ensuring our wildlife doesn’t die out.  No-where for our military or our pilots to train.  No-where to go snow boarding, fell walking, horse back riding, canoeing or the 1001 other outdoorsy activities that some folks like to do.  No-where to study our night skies.  No-where to go to avoid the pollution so rife in our city air.  No-where to go to escape the hustle and bustle and to just sit in peaceful solitude.  Not to mention the fact we’d lose 20 million overseas visitors a year which would wreck the entire country’s economy.  On the plus side, at least there would be no tourists trying to climb Blencathra in their trainers and flipflops and no need for our mountain rescue team risking their lives to save them.  Bonus.

Of course it’s not feasible to have a hospital in sparsely populated rural areas, however there absolutely should be recognition of the fact that rural people are economically disadvantaged in accessing health care.  We should have free parking at hospitals and either quick, reliable hospital transport or vouchers towards the cost of petrol, train or taxi fees for both patients and their main carer.  If we have to travel out of the county there should also be vouchers for free b&b accommodation.

There needs to be a concerted effort to make health education available to all.  It’s impossible to take time out from the busy working life of a Consultant to attend a medical conference 300 miles away, just as it’s impossible for sick patients to travel halfway across the country to attend patient events, so much more needs to be done to hold conferences away from London and Birmingham and to ensure that venues are accessible by major train links.

Just because we live outside of cities shouldn’t mean that we receive both poor health education and poor health care.  We pay our National Insurance stamp and taxes just like everyone else, yet seem to get very little in return.

Yet another year of Peri

Even though we’re only half-way through 2017 I already have an entire year’s data on my ever changing menstrual cycle.  That’s because my cycles are now regularly shorter than 28 days, so I’m managing to fit in double the amount of periods than I used to.  Lucky me, especially bearing in mind I have endometriosis and adenomyosis and they are excruciating.

When my periods first started to change back in 2012 at the age of 44 and I realized I had probably started peri-menopause, I wanted to know about other women’s experiences.  There were legions of horror stories online, very little about the positive and hardly any actual hard data.  “It’s different for everyone” was a common theme, which is all well and good but I still wanted to know what was physically happening to other women to give me some companionship in my own journey through The Change.

Being as though I didn’t find a single story which tracked progression through peri-menopause I thought I’d track my own, so began compiling data on my menstrual cycle.  I’ve been a regular 27/28 day cycle person my entire life but in 2012 my cycle length started to subtly change and I initially experienced slightly longer cycles than usual.

MC2012

In 2013 things went totally haywire.  As you can see from the chart below I basically had alternating long and short cycles, with a couple of very short cycles (for me at any rate).  I had my first daytime hot flush this year, but only the one, and no other real symptoms.  I did have my hormones tested and they came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.

MC2013

In 2014 my cycles were still abnormal, but not quite as erratic as the year before.  Again, no other symptoms of peri-menopause that I could put my finger on.

MC2014

The start of 2015 saw my cycles even out, only to become erratic again in the second half of the year.  I also saw a couple of symptoms appear – vaginal dryness around my period, which doesn’t half make your ladygarden itch and is well uncomfortable as your undies rub against your bits, and changes in my mood.  I had sudden and inexplicable rages which were absolutely overwhelming.  Having never suffered from PMT I found being so out of control of my emotions really difficult, though thankfully the hooha only usually lasted a day or two around my period.

mc2015

In 2016 I continued to have vaginal dryness and mood changes, but the dreadful rages I felt in 2015 thankfully disappeared.  I did still have a short fuse at certain times in the month but it was nothing I couldn’t control.  I also had some really weepy episodes, usually in the few days before my period started and by the end of the year was starting to feel quite overwhelmed.  As someone who usually has very stable moods this was unusual for me.  I didn’t know how much was down to the perimenopause and how much was down to what was going on in my personal life, ie the situations with my parents and my Mum’s drinking, so decided to see a therapist to help me work through it.  Three months later and I was feeling much calmer, so you really shouldn’t put everything down to your hormones!

mc2016

This year as you can see from the chart below, my periods are becoming even more erratic.  I don’t have a clue when The Curse will arrive, which makes planning difficult.  I am grateful my moods have fairly much evened out and I’m back to feeling more like myself, though I have periods of anxiety for no apparent reason which is fairly common for peri-menopause.  I still haven’t had any hot flushes though my sleep has definitely been affected and there are times I struggle with insomnia.  My migraines around ovulation and menstruation have definitely become worse and can last for days which is crippling.  My energy levels have taken a nosedive and my brain fog some days is dreadful, however this may be due to the fact that I am borderline anaemic and now on supplements for my iron levels rather than being solely down to my hormones.  The biggest two things I’ve noticed this year have been weight gain and painful, itchy breasts which have been checked out via mammogram and are fine.

I’m definitely having symptoms of peri-menopause but they’re so far nowhere near as bad as I was expecting and nothing like the horror stories I’ve read about online.  They can be annoying but are manageable and it helps that I know what’s happening and that it will all eventually pass.  Everything that’s happening to me is normal and to be expected – very few women just stop their periods with no symptoms at all and I’m happy for nature to just take its course.  This all may change as the actual Menopause arrives and I may end up eating my words but so far so good!

A full 5 years into peri-menopause and there is absolutely no sign of Aunt Flo packing her bags.  Due to my endo and adeno my monthly cycles are incredibly painful and debilitating, and I have to say I’ve been ready for some considerable time for the monthly torture stop.  So, periods, if you’re listening I am over you – feel free to leave the building!

Weekly roundup

It’s been a strange week with one thing and another.  My Step-Dad’s Mum, who is 103, has been in a brilliant care home for the past 4 years.  A couple of weeks ago she had a heart attack, but being as though she has a DNR (do not resuscitate) order she wasn’t hospitalized and was cared for in the home.  Ten days ago it looked like she was passing away but the nurse inserted a drip and gave her antibiotics for a chest infection and she rallied.  I do wish the nurse hadn’t intervened because all it achieved was to drag her dying out.  Five days ago the Doctor went to see her and took the drip and meds away.  My Dad has sat faithfully by her bedside ever since and she finally passed away last night.  She’s never liked either me or my Mum for reasons unknown and I’ll go as far as to say she’s been a right bitch to both of us so it’s not like I’m sad about her death, however my Dad will be devastated.  No matter how old or how ill, our Mums are still our Mums.

We had a couple of dry(ish) days at the start of the week so I managed to get a few much needed jobs done in the garden.  It’s rained here in Cumbria almost non-stop for about 6 weeks now and was so cold last night I’ve woken to condensation on my bedroom windows.  FFS, does it not know it’s the middle of bloody summer??!

Thursday I took a friend from Camera  Club to photograph red squirrels at a secret location I don’t shout about.  They’re so cute I could watch them all day.  By mid afternoon I’d started with tummy pain and was a bit flummoxed as to what could be causing it.  It got worse as the day progressed, which is all I needed as I was having 5 other camera club members round to my house in the evening for a meeting about next season’s programme.  The meeting went ahead but I was feeling pretty ropey and couldn’t wait for them all to leave so’s I could get into bed with a hot water bottle.  My period pain always starts initially with stomach pain, but I thought I was only on about day 9 or 10 of my cycle so it couldn’t be that.  Er, wrong!  Woke the next morning to Aunt Flo and when I checked my diary I was actually on day 24 of my cycle – doesn’t seem like two bloody minutes since the last one!  Consequently I was awake for most of Friday night with awful endo-related period pain and a migraine which hung around through most of Saturday.

My lovely furry child Bertie turned 9 this week 🙂  I adopted him when he was 2½ and have no clue where those six years have gone!  I also have no idea what I did with my time or money before I got him but wouldn’t swap him for the world.  It’s because of him I got into photography and for that I will always be grateful.  He is my loyal and faithful companion and as I type this, sitting up in my bed, he is asleep between my knees with his head resting on my thigh.  I love him to the moon and back even though he pinches food the second my back is turned, eats sheep shit then licks my face and barks so much he’s in danger of perforating my eardrums 😉

Today is forecast to be dry and, dare I say it, even a little bit sunny so I’m palming the dog off with my Mum and taking my photography hide down to the river.  In the past 12 months I’ve managed to get good pictures of a red squirrel and a heron, both of which have been on my bucket list for the past 4 years but I still haven’t managed a picture of a Kingfisher.  I know where one is currently perching every day at noon, so I’m hoping if I keep going to where I know he hangs out I’ll eventually manage a shot.  Wish me luck!

Friendships

Today I read another wonderful post by Lindsay over at Musings of a Dysautonomiac, a fellow blogger who has POTS and MCAS.   I ‘met’ Linds through my blog and am now privileged to class her as a friend, not in any kind of traditional way because we live in different countries and are online at opposite ends of the day, but in my heart.  I look forward to her posts and Facebook messages, rally for her and struggle with her – all without saying a word because I don’t have the energy but I hope she knows that I see her and care about her life.

It’s a good job I make new friends every now and again because I’ve lost all my pre-illness mates.  Every single one of them.  Sometimes I’ve let the relationship go and sometimes they have but the end result is the same, and no matter who the instigator is saying goodbye to a relationship you once held dear is painful.

Like Lindsay, I traditionally got along with men better than women.  Having said that, I always had one or two very close girl friends but they were often people who were in some way broken or needy and, being a caring person, I often seemed to fall into the parental role in my friendships which of course turned to crap when I got ill because I could barely take care of myself let alone anyone else.   I’m also not a girlie girl and just find the banter and straight-talking attitude of blokes easier to handle than the complex subtleties of women which I often find bewildering.  But then I got sick and realized that, on the whole, men don’t do illness.  They make rubbish carers and simply don’t know how to react around sick people, especially a sick person who used to be feisty and independent and who is now…………well, still feisty but more needy 😉

After all these years I’m not even sure it’s possible for me to have good friendships with healthy people.  They just don’t get it.  Have no clue what my life is like or the struggles I face every day.  And I’ve found I lose patience with their whining over inconsequential shite and am frustrated by how little they value their lives – their healthy, active, vibrant, full of possibilities, lives.  And don’t get me started on how much they moan when they have a cold!

Occasionally, though, healthy people surprise me and there are two or three people at my Camera Club who do make an effort to ask the question “how can I make it easier for you to do x, y or z” and to include me in activities, for which I am hugely grateful.  It’s a lot of pressure though.  Here they are making special efforts to arrange outings and activities which I can take part in, but then I feel like I absolutely must take part because of all the trouble they’ve gone to.  So what happens if, on the day, I wake with a migraine and can’t move, or have anaphylaxis and end up in bed puking?  I let everyone down and although they try not be annoyed I know they are because, after all, they’ve gone to all that trouble just for me and the least I can do is show up.

Having close friendships with other sick people, however, is also challenging.  Neither of you has any energy and trying to find a day to meet up when you’re both well enough can be a struggle.  It’s vitally important you don’t just have illness in common too, otherwise all you do when you get together is talk about being sick which would be monumentally depressing.  I met my now best mate at an M.E. conference about 15 years ago and neither of us are particularly girlie girls.  We’re both creative and practical, like nature, gardening, being outdoors and have renovated houses, so have stuff besides our shared disease in common though I’ll never understand her passion for mines 😉  I honestly think I’d lose my mind if I didn’t have her in my life – no pressure then K!

Friendships when you’re chronically ill are tricky.  I’d love more friends but realistically know I don’t have the energy, especially if the friend is well and expects to meet up regularly or do physical activities.   Friendships with other sick people are easier in some ways yet harder in others – when you both lack energy there is a tendency to not communicate for months on end which, while understandable, is lonely.  And while online friendships are great there’s no substitute for meeting up in real life and actually being with another person.

If you’re lucky enough to find someone you click with, who shares your sense of humour, your interests and who gets you and your disease it’s priceless.  I’ve told my best mate that, should she ever threaten to break up with me, I am chaining her up in my shed so’s she can’t escape 😀  To all my online friends, whose caring, sharing, humour and empathy keep me going every day of my life “THANK YOU!” for being there and for being you.  You make an otherwise unbearable life less lonely.