Friendship is not a noun

This week I need to write my Christmas cards and get them posted. I used to send about 80 cards and now send about 30, the reason being that I cull people off my Christmas card list every single year. I used to worry that I would upset them, but the fantastic thing about getting older is that you stop caring about what other people think and start caring more about what you think. I can’t tell you how liberating that is 😀.

The reason people get culled off my list is that I have no contact with them from one month to the next, one year to the next. They are not my ‘friends’. Friends are people who care about you. They know what’s going on in your life. They check in on you and actively want to know how you are and what you’re up to. And if they don’t, what’s the point of the relationship?

I know some people say “oh, we’re not in touch often but when we do get together it’s wonderful” and if that works for you great. But it doesn’t work for me. During the 12 months you haven’t been in touch I could have died. My parents could have died. I could be destitute, a victim of crime or seriously ill and you, my so called friend, would be none the wiser. That’s not any kind of relationship I relate to. I want to know what’s happening in my friends’ lives. I want to share in the ups and comfort in the downs. Isn’t that what friendship is all about?

We are in the technology age. I have butt dialled people on my mobile phone by accident, so there is no excuse for not getting in touch with your friends. A text or Whatsapp message takes seconds, an email slightly longer but only by minutes. You can Skype or Zoom or Facetime without leaving the comfort of your armchair wherever you are in the world. You can keep abreast of your friends’ lives on Facebook, Twitter or Instagram. It’s never been easier and if you haven’t done any of those things you have to wonder whether you care about your ‘friend’ in any way. We are all busy, but even when I’m busy I often think to myself “so and so would love this” or “I wonder how so and so got on at the hospital today?”.

Relationships have to be nurtured. Like a plant in the desert, without water they will shrivel and die. And the watering should be something voluntarily and lovingly done – if it’s becoming a chore you have to ask yourself why.

Five more people were culled off my Christmas card list this year. I have not heard a word from them since the card they sent me last Christmas, and this year in particular with me being chronically ill and living alone during the pandemic I would have thought they would have been in touch to see if I’m OK. It’s not like they were too busy – we’ve spent 4 months of the year at home in lockdown twiddling our thumbs. But they didn’t. I could have died from Covid and they wouldn’t even know, so as far as I’m concerned we have no relationship.

As I get older my circle of friends gets smaller, but that’s OK. It’s quality not quantity that counts.

The great thing about the cull is that I have more of my precious energy to spend on my other friendships and as my circle dwindles I am more appreciative of those who remain. I’ve had lovely messages from friends in other parts of the UK, and abroad, whom I’ve never met in person but who have been wonderfully kind and supportive this year, despite their own hardships and/or health issues. Yesterday, a friend from my old Camera club popped by to hand deliver a Christmas card and loan me a book he’d bought on photography which he thought I might like, and when I looked in the bag there was also a little gift to go under my tree. So kind of him. He also emailed me last night to wish me luck for a talk I was giving via Zoom and will no doubt be in touch today to ask how it went. He is so supportive and encouraging of me, and genuinely interested and active in my life, and I am hugely appreciative of that especially as I am so isolated. But it is a two way street – he and his wife were two of the five people I shopped for groceries for during the lockdown and I know how hugely appreciative they both were.

When it comes to our relationships we have to put verbs in our sentences. It’s not enough to say you are someone’s friend, you have to actively be a friend and this year in particular being a friend has never been more important.

Boundaries

As a child from a dysfunctional family I have always struggled to erect and enforce boundaries. There weren’t any boundaries when I was growing up. The way any issues were resolved was for one or other parent to go ballistic and start chucking stuff, so I mirrored that in my relationships as a young adult. It doesn’t help that by nature I am feisty. I’m never going to be a calm plodder – I’m way too passionate for that. Finding a way to express my personality, stand up for the issues about which I feel strongly and yet fit in to a society which frowns on emotional outbursts, particularly from women, without guidance of any kind has been a lifelong challenge.

As I’ve aged and grown more comfortable in my own skin, however, it’s definitely become easier. This setting of boundaries is the main reason I refused to stay at my last Camera Club where I was being bullied, and also the reason I refused to keep quiet about the reasons why I’d left. Most people at the club turned the situation around on me, gaslighted me and victim blamed me mercilessly, but I still don’t regret my decision for a second. I would do the same again because this is a boundary I will not allow to be crossed. I was bullied for years at secondary school and will not tolerate that in my adult life or protect the perpetrators which allows them to go on and bully someone else.

Another boundary I refuse to allow is being dominated by men. I had a lot of that in my early adult life and it is not acceptable to me. There is a man at my current Camera Club who added me on Facebook. He’s a Conservative voting, middle aged, middle class, white guy who thinks that his view of the world is the only view and that everyone else is wrong. He’s commented on posts about the welfare state, of which he has zero experience or knowledge, and my posts about women’s issues, again something he has zero experience of living. I’ve also been posting a fair bit on my FB page about the pandemic and the USA election, both of which are important issues of the day, and he has challenged my views on every single post. Within seconds of writing anything he has commented and it’s always to tell me that I am wrong (and therefore he is right) or to post a laughing smiley, basically deriding my viewpoint. Enough was enough when he told my American friend she was missing the point about Trump (she lives in the States and he……..well, doesn’t!) and basically called me an extremist for saying that Trump’s policies on immigration and the rousing of hatred for Mexican citizens scared me to death. I’m not saying that illegal immigration isn’t an issue, as it also is here in the UK, but demonizing an entire population, inciting fear, hatred and ‘other-ness’ is never the way forward.

Twenty years ago I would have flown off the handle and we would have had a blazing row, but I’m older and wiser now. I could have just ignored him, but that wouldn’t have a set a boundary. So I told him “my view is clearly different to your view, but it is a view to which I’m entitled. I suggest your air your views on your own Facebook page, because I don’t have the energy to keep responding to your challenges of my own views on my page”. He immediately replied (of course he did!) but I haven’t read it because you can guarantee it’s not an apology and is instead a comment designed to upset or infuriate me, and he’s now excluded from seeing anything I post on Facebook (I don’t want to unfriend him as I have to see him every week at my Club).

Here’s the thing about setting boundaries that many women in particular struggle with: people often aren’t going to like it. It may cause upset, like with the bullying at my last club, and it might not make you popular. And that’s OK. Your job is to love and respect yourself not to please everyone. The sooner women realize that, the better. I would rather have no friends and tons of self respect, than lots of acquaintances and zero self respect.

It is possible to be kind and loving, as I am towards my alcoholic Mum, but to also have boundaries. There are behaviours that I will tolerate from her and behaviours that I absolutely will not. If she’s acting in a way which isn’t acceptable to me I tell her “you’re drunk, so I’ll speak to you again when you’ve sobered up”. She hates me at the time but it’s that or I just stop visiting.

It’s been difficult to find a way of setting boundaries calmly but firmly, especially when you’re pissed and simply want to tell the person to fuck off, or you want to be sarcastic or derisory. However that simply perpetuates the behaviour of narcissistic people, who feed off conflict. The one thing most people with narcissistic tendencies hate, I’ve discovered, is polite but firm boundaries which leave them with no outlet for their behaviour.

Due to my early conditioning I do still struggle with setting boundaries, but it’s gets easier and more comfortable the more I do it. Have I lost acquaintances as a result? Yes. Do I give a flying fuck? No 😁. It’s very liberating.

It’s (not) good to talk

It’s been a tough year so far with one thing and another.  There really was no need for a global killer pandemic on top of being bullied and publically slandered, losing the desperately needed house I’d searched for for 5 years, and spending months being bitten by vampire bugs while I slept.  Add the final stages of the menopause to the mix, not to mention all my pre-existing health bollocks and my 8 years of non-stop caring duties, and I think I’ve earned my recent mini melt-down.  When it got to the stage where I started to cry the second I opened my eyes each morning, however, I knew I was in trouble and something had to change.

I’m usually pretty good at giving myself a rallying pep talk, re-aligning my state of mind and counting my blessings, but the past couple of months I’ve just been too tired.  Way, wayyyyy too tired.  Instead, I did something rare for me and reached out to other people.  Admitted I was struggling.  Hoped for some loving support and guidance.  I might as well have put my mental health in a blender.

I told my GP, not for the first time, that I was struggling and feeling overwhelmed in a recent written review I have to do each year for my insurance company.  Being as though I call her by her first name, she’s been my GP for years and she knows how strong I usually am, I thought she might at least be concerned enough to pick the phone up and speak to me.  Just to check I wasn’t going to slit my wrists in the bath.  Turns out all the lovely caring doctors you see on the telly are just actors and the ones in real life don’t give a shit.

I reached out to my disabled friend, to tell him how stressed, overwhelmed and exhausted I was.  And he told me to cheer the fuck up and get over it.  Helpful!  And needless to say we are no longer friends.

I told my ‘nice’  neighbours and friends of 16 years that I was really struggling with all the increases in noise where we live, particularly as I’ve been feeling so exhausted and it was affecting my ability to sleep, and was told it didn’t bother them, the world can’t stop turning for me and to basically get over myself.   I’m no longer friends with them either, particularly as I was crying when I was telling them because I felt so down and unwell.

I’ve also written several posts here on my blog recently about how low I’m feeling and out of 900 followers less than 10 people have reached out to me.  So to Melody, Guinevere, Livvy, Eirlysgwenllian, Jane, Elaine, swinkie34, Jill and Daniel I have one thing to say……………… 🧡 🧡🧡🧡🧡.   And to Linds and jen6girls “thank you from the bottom of my heart!” for offering (and in Linds case getting at huge cost to herself) me some famotidine.  And to those of you who I know are going through stuff much, much worse than me (artfulblasphemer I think of you often) and are too unwell and exhausted to comment, I understand totally and send my love and hugs.

On the whole, though, the reaching out thing has been about as successful as Boris Johnson’s Covid response .  On the plus side, not spending half an hour each day talking to my disabled friend on the phone to ease his loneliness plus half an hour each day talking to my ‘nice’ neighbours who are isolated due to Covid has freed up a whole hour of my time, so at least I’m managing to keep on top of my laundry.

I’ve discovered that it’s not that good to talk (only Brits will get the joke 😉) and it’s solely up to me to pull myself out of the mire – no change there and the story of my life.  So I scraped up the energy to give myself the pep talk.  To re-focus my intentions for my days.  To raise my vibration.  To keep moving forward by setting myself new goals and challenges.  Which might involve me being substantially more selfish and which will come as a shock to most of the people around me who take my care of them, and the generous donation of my precious time and energy, for granted.

It’s at times when we feel at our most weak, that we have to be our most strong.  Onward and upward Warriors!

Weekly roundup

I know a lot of snappy, cranky and rudely forthright elderly women.  My bestie and I could never work out why so many women became super nasty when they got older……………but now I know.  Oestrogen makes you soft and fluffy and without it your bullshit radar is at warp 10 and if anyone messes with you they are liable to get an ice pick in their head.  I say this just so’s you know where I’m at emotionally 😉.

I have fallen out with 2 of my friends this week and have no intention of making up with either of them.  The first are my “nice” neighbours who have taken the side of shit-for-brains in my legal dispute.  All I’ve ever wanted is to be able to leave my home in my car, but for 4½ years shit-for-brains has been blocking me in by parking, and allowing his staff, delivery drivers and customers to park, on my drive.  I’m doing absolutely nothing wrong in this scenario, and shit-for-brains is parking illegally on my property.  When asked to move he has been abusive, his staff have been abusive, the delivery drivers have been abusive and his customers have been abusive.  Yet my “nice” neighbours think that I am the one being unreasonable.  Apparently, I should let him park there and just wait until he, his staff, his customers or his delivery drivers have finished doing what they’re doing.  WT-actual-F?!  Shit-for-brains has now said he is looking for other premises and my “nice” neighbours are blaming me for him leaving.  This man has had me in tears on more than one occasion, made me late for medical appointments for both myself and my parents, he even made me late for my niece’s passing out parade for the police force, and has cost me a small fortune in legal fees.  He is also one of the main reasons I am so desperate to move house as the stress has massively impacted on my mental health.  It is beyond my comprehension why my supposed friends would ever take his side against mine and I will never forgive them.

I’ve also fallen out with my disabled friend.  He is elderly, dominating, used to getting his own way his whole life but is now a bit confused at times, so I actually put up with quite a lot of crap from him and give him a lot of leeway, but this week he overstepped the mark.

Ever since I’ve known him, he has constantly focused on how I look.  I genuinely think he is only friends with me because he wants a young (at least younger than him!) dolly bird on his arm to show off to his mates.  In fact, he told his friends in town I was his mistress and when I found out I went ballistic and made him tell the truth!  He is constantly critical about my appearance.  He told me he was “sick of seeing you in jeans and that awful jumper” and offered to take me shopping and pay for new clothes, which no doubt would have been pretty, feminine dresses – who the fuck does he think he is?  He has criticized me for not wearing jewellery or makeup, despite the fact we usually meet early on a Sunday morning after I have spent an hour walking the dog on my scooter, usually in the pissing rain.  During lockdown he pointed out my hair was grey and needed colouring.  He also said my hair looked a “bloody mess” (yeah, me and every other woman in the country on account of the fact no fucking hairdressers were open).  And as soon as lockdown ended he offered to pay for me to visit said hairdresser to sort my hair out, despite knowing I am very sensitive about my hair as I have alopecia.

When he’s not being critical, he’s being inappropriate.  The day I helped him move house last year (with none of his family to be seen and despite the fact I’m ill myself) he kept commenting on how nice my arse looked in my leggings and how me being all hot and sweaty was raising his blood pressure.  I wanted to slap him one, not least because the effort of helping him move made me feel really poorly for days.

The final straw, however, came this week when I finished my latest photograph.  It had taken a lot of work, skill and effort and is based on the poem “not waving but drowning” by Stevie Smith.  The poem really resonates with me, as I’m someone who is always nice, chatty, friendly and pleasant with everyone while inside I constantly feel like I’m drowning due to the fact I have a very difficult life and hardly any support or help.

His comment on the picture was this “…….The picture is also rather sexy!! Perhaps that is just my mind but i would be careful where you show it. [Maybe next time it could be a mermaid!!! – just for me?……..]  Sorry…but i do think the top half is beautiful enough to get my imagination going which at my age is not good for the blood pressure!  This is one of the penalties will pay for being a very attractive, nay, a beautiful woman.  Forgive me if this is inappropriate but i just had to say it.”  Really?  Like, REALLY?!

For a start, the photo is about someone drowning which should be worrying and disturbing.  For seconds, I am fully clothed – there is nothing sexy about this picture.  And for thirds, I am wearing a long wig and have photoshopped my face to within an inch of its life – he knows full well I don’t look anything like this in real life on account of the fact I’m 52 years old.  There was no critique of the actual picture in any way, just creepy, inappropriate comments about my appearance which make me feel really uncomfortable.

I have had 52 years of men being obsessed with how I look.  Old, young, married, single, a teacher (when I was 14 years old), my Dad’s mates, several bosses and co-workers……..they have all hit on me.  Relentlessly.  They ignore my personality, intelligence and other wonderful qualities, constantly flirt and behave inappropriately and treat me like a piece of meat.  And then everyone wonders why I’m single.  I will not put up with this crap for another second.

He has been told on several occasions, the last very forcibly and only about 10 days ago, that his constant comments about how I look (negative or positive) are upsetting me and he has to stop.  But he can’t help himself.  I have been a brilliant friend to this man since his wife died 5 years ago but I’m done now and he’ll have to crack on without me.

Other than that, I’ve tried to have a week where I’ve focused more on myself and my needs.  I palmed the dog off onto my parents on two separate days and went out into the peace and quiet with my camera.  Didn’t get any decent shots, but just lay in the grass, listening to the birds and the river babbling by – it was blissful.

Having said all that, I also had to get the engineer out to my gas fire which won’t light, had to contact BT as my broadband speed has dropped to 10mbps when it should be 55mbps and spent 2½ hours at my Mums on the phone to Talk Talk trying to get an engineer out as her phone line is faulty – don’t ever go with Talk Talk to provide your phone and internet, they are the worst company I think I’ve ever dealt with 😤.  I also still don’t have (or want due to Covid) a cleaner, so had to change my bed and clean the house which was minging.  And collect Bert’s repeat prescription from the vets.  And take my Mum for a blood test.  So it’s not like I’ve ligged about all week doing nothing (I wish!) despite the fact I continue to feel exhausted beyond all comprehension, am in so much pain I can’t sleep at night and am so depressed I’m not eating.

I feel so let down by my “friends” and being as though I’m already really emotional and down and need more support, not less, it’s been a bitter pill to swallow to realize that neither of them actually give a crap about me when I’ve been so good to them both over the years.  I know one thing for sure though – they’ll miss me a lot sooner than I’ll miss them.

 

 

Check on your strong friend

I had a chaotic, lonely, emotionally confusing childhood and was systematically bullied at school for years.   Because of the strain of all this, I suffered from both depression and anxiety throughout my teenage years.  Depression also runs throughout my Mum’s side of the family and is obviously something my Mum has struggled with most of her life and probably the reason she is now an alcoholic.  My Mum’s sister had depression so severe she had electric shock therapy and several of my cousins suffer with mental health issues.

I got help for my depression and by my mid twenties was on top of it, but it’s something which continued to lurk in the background.  Just at a low level, nothing to worry about, but it was always there.  Anyone with a chronic illness which lasts for decades is going to be at risk from depression,  no matter who they are.  Amazingly, though, going on a low histamine diet and getting on top of unkown but life-long mast cell disease helped enormously and during my forties I was happier than I probably had ever been in my life.  But now I’m going through the menopause my brain chemistry is off again and I’ve been feeling low for quite a while.  Weepiness comes over me in waves, or I’m irritated by every little thing – a bit like permanent PMT.   The joy has gone out of my days and the future stretches ahead like a deserted and dusty road.

I’ve had a rough 12 months.   There was all the horrendous stuff at my previous Camera Club which was genuinely emotionally traumatising. There’s been all the house moving situation – one of the most stressful things anyone ever does in life.  I’ve spent 8 months in a legal battle with my neighbour.  I had the bed bugs, which nearly drove me demented.  Then the pandemic arrived, during which I had 2 very negative experiences including being screamed at by a random strange man which was really quite scary.  I had the responsibility of trying to food shop for 5 vulnerable and elderly people, having to stay up til midnight to try and book delivery slots even though I was beyond exhausted.  It was also physically draining as I had no cleaner and my parents had no cleaner and my dog walkers couldn’t do their usual shifts.  Then because I did too much I’m still in a huge pain flare 3 months on.  Any healthy person would be struggling, but on top of all of that I’m sick and live on my own.

Thankfully we can now openly talk about mental health issues, and despite being someone who usually just soldiers on I have mentioned, repeatedly, that I am struggling.  That I’m tearful.  Lonely.  Overwhelmed.  Utterly exhausted.  Finding it difficult to get out of bed some days.  No-one seems to give a shit though.

I’m the STRONG one y’see.  I’m the caregiver.  I’m the ‘bubbly’ person that other people rely on to lift their spirits.  I’m dependable.  And capable.  Creative and successful.  I’m the person everyone else leans on.  Only no-one is strong all of the time.

When someone like me takes their own life the world is thoroughly shocked.  Why didn’t they say something?!  Tell someone!  Only, maybe they did and no-one was listening.  Or maybe no-one gave a fuck – I mentioned in a recent letter to my GP (and not for the first time) that I was struggling and she didn’t pick up the phone or even reply.  Maybe the people in their lives had their own stuff going on and couldn’t cope with anything extra?  When someone is suicidally depressed the signs are always there.  It doesn’t surprise me at all that seemingly strong people end their lives because by the time they admit to anyone that they are struggling they are literally teetering on the edge on the precipice.

I’m not suicidal before anyone panics but I am at the lowest ebb I’ve been in for years and years.  I feel altogether alone and it’s “aloneness” which often appears to be a thread running through the seemingly unexplainable suicides we read about in the paper.  If someone tells you they are feeling lonely sit up and take notice because what they’re actually saying is they are lacking love and support.

The moral of the post is check on your strong friends.  And when they say “oh, I’m fine” but you know they’re not, dig a bit deeper.  Spend some time.  Show you care.  Make them feel less alone.  You might just save a life.

 

 

 

I am an Adult

To pass the time in lockdown I’ve embarked on a garden project I’ve wanted done for years.  It’s not easy due to my health, and I can only do a tiny bit at a time, but I know that when it’s finished I’ll feel a massive sense of achievement and pride.

It’s been difficult to source the materials I need due to the pandemic, but I managed to get a delivery last week.  I wasn’t going to be in, so advised them to leave it by the side of the house in the driveway which they did.

When I came home in the afternoon the materials were nowhere to be seen.  I knew they’d been delivered, so knocked on my neighbour’s door to ask if he’d seen them.  “Oh, yes, I moved them to your car port – I was worried they’d be pinched”.  Hmmm.  Like I hadn’t given any thought to the safety of materials I’d spent £100 on, and concluded no-one would take them in broad daylight, in a tiny village, surrounded by neighbours all out in their gardens for the 4 hours I was going to be out of the house?!   I told him it was kind of him, just to keep the peace.

Most of the project I can manage on my own, but I did need another person to hold a piece of wood for me for 5 minutes while I secured the other end so I asked the same neighbour to lend a quick hand.

As we worked he asked me about the project and what I was going to do next, then for reasons I can’t work out he decided I needed his ‘help’.  He proceeded to tell me how to complete the project, like I hadn’t given it months of very careful thought, and despite the fact he’d only thought about it for twenty seconds and his idea actually wouldn’t work.

He then picked up all the tools and materials I was using without a seconds thought, in the middle of a highly infectious pandemic, and started taking over.  This took on added significance when the very next day I was told his daughter was being tested for Covid-19 after developing shortness of breath, and while he doesn’t live with her he’d been to her house 2 days previously because she lives on a farm and needed help.  FFS.

I told him three times “thanks, but I can manage” but he simply ignored me.  I then said “I need to stop now as I’m exhausted” so he said “well, you go inside and I’ll just carry on with this”.  NOOO!!!!  FUCK OFF!  Why aren’t you listening to me?!  So I try one more time “Leave it for now please.  I know it’s going to take me longer than it would take you but that’s OK, I’m not in a rush”.

Now, every time I go anywhere near my garden to start on the project he comes out, unbidden, to ‘help’ and I have to keep reminding him that “I can manage”.  It’s stressing me out.  He constantly tells me how I should be doing things like I’m an inept child and despite the fact that he’s the biggest bodge-it merchant going.  He owned the cottage I live in and the DIY horrors I found in here are legendary, including a live electrical wire shoved behind wallpaper on the chimney breast and damp covered up with kitchen foil, which turned out to be from a leaking underground sewer pipe.

He’s now telling all the neighbours “we” are doing the project and in the process completely robbing me of any sense of achievement.  It was such a big deal to me to do this thing I’ve thought about since I moved here 16 years ago and now he’s making out it’s a joint venture (with him at the helm, obviously).  I want to strangle him.

I told my elderly, disabled friend I was doing the project and he immediately went into parent mode.  “It’s too much”.  “You need to be careful.”  “Don’t overdo it.”  were his first words, and while I appreciate his concern I don’t need anyone to tell me how to take care of my health.  I’ve been doing it for 30 years and know more about managing my condition, and what I can and can’t do, than anyone on the fucking planet.

Next he tells me “I’m worried.  I think I should come and keep an eye on you” even though he is nearly 80, so disabled he can barely walk or stand and so muddled he doesn’t know what day of the week it is.  I’d end up looking after him as usual and getting absolutely nothing done.

I politely declined his offer of ‘help’ but he went on and on and eventually I had to put my foot down.  I said “As a 52 year old grown woman, who’s lived on her own for 30 years, I wonder how I’ve managed to not seriously injure or kill myself when doing jobs around the home? Might it be that I have at least have half a brain cell with which to make decisions about my own safety?!” which was rude I know, but seriously the man wasn’t taking any notice of the polite “thanks but no thanks”.  He did have the good grace to apologize.

Men constantly want to control me.  I try really hard to set boundaries but they simply ignore them and do what they think is best for me.  It drives me insane, not least because I’m the most savvy, practical, self-sufficient person I know (my best mate aside) and have survived a life they can only imagine in their nightmares.

I don’t need to be babied, especially as I’m in my fifties and have very successfully lived on my own since I was 22.  It’s absolutely exhausting to have to keep wrestling back control in my interactions with men and to constantly battle their dominance.   Why do they all insist on treating me like I’m a child? I’m not a wallflower.  I’m confident and clearly not stupid.  I don’t get what this parenting of me is all about, not least because both my parents are still alive and kicking.  I don’t need to be ‘looked after’, having looked after myself for my entire adult life.

I can’t win in my interactions with them either.  If I’m polite they ignore me, if I’m forceful they get offended or tell me I’m a narky bitch!

This has been happening to me my entire life.  Last year I went to the petrol station to buy a ticket for the car wash.  It wasn’t working, so I walked back to the car.  A man followed me, who I didn’t know from Adam, stuck his head through my car window and proceeded to tell me how to wash my vehicle.  “You shouldn’t be using the car wash anyway” he profers “it scratches it.  You should be using the pressure washer with the soft brush.”  Would he have walked up to a strange man at the petrol station, stuck his head through his window and told him how to wash his car?  No he fucking would not!  And I can’t use the sodding pressure washer on account of the fact I’m not well enough – not that I told him that because it was none of his sodding business.

If I need help or advice, which we all occasionally do, I will ASK for it and if I don’t ask it’s because I don’t need or want it.

 

 

 

 

Left Out

My best mate and I both developed M.E. in our early twenties and have been largely housebound for our entire adult lives.  In the last few years we’ve both taken the huge step to join social groups, my mate for botany and me for photography.  I say “huge step” deliberately.  Not only is taking part in a social group with healthy people physically demanding it’s also mentally demanding and a social minefield.

We were having a coffee the other day when my friend told me she was struggling with the social aspects of being in a group and she couldn’t understand why she was finding it so difficult.  “I fucking hate small talk” she said, “and I get frustrated and irritated when they all piss about and take ages, when all I want to do is crack on”.  I knew exactly where she was coming from.

When I joined my camera club 6 years ago I was all at sea.  I go to bed every single day at 3.30pm, so to have to get up again at 6pm, get dressed and get myself into town, not to mention sitting upright on a hard chair without my feet elevated for 2 whole hours, was a monumental physical feat every single week.  Then I had to concentrate on what was being said, and concentration is something I struggle with during the day let alone in the evenings.  But on top of all that I had to interact with other people, which I found hugely challenging.  I had the social skills of a 25 year old, not a 45 year old.  The last time I’d been around other people I’d still really been a kid, and I’d missed out on 20 years of learning the art of being in a social group.  Because of my brain injury I also don’t pick up on non-verbal clues like body language or nuances in tone of voice – I do well to just follow a conversation for crying out loud, especially in an evening when I’m knackered and am feeling dizzy and faint due to being upright!

Then there’s the getting to know people issue and the dreaded “so, what do you do?” question. My personal life, and my personal health, is not the business of some stranger I’ve just met but on the other hand this person may become a friend in the future, so how much do you actually say about your situation?  I’m a very open person in general and don’t have huge issues talking about my health.  My friend, OTOH, is much more reserved and struggles to talk about herself.  Then, of course, there’s the whole issue of how M.E. presents itself.  Even my own family initially found it hard to understand payback and Post Exertional Malaise, particularly when I look so well, and I know members of the public often can’t get their heads around our lives and the fact we can do an activity one day but not the next, or we can do one type of activity but not another.

Occasionally, both myself and my mate go on trips out with our respective social groups.  We both find them frustrating experiences.  People like to faff.  They take ages getting their kit out of the car boot, putting their anoraks on, deciding which route to take and generally just arsing about, and we don’t have that luxury.  Every second that ticks by our precious energy is disappearing, so we need to get going with the task at hand.  Then there’s the fact we can’t concentrate and talk at the same time.  So while other people are wanting to chat to us while we’re taking pictures, or collecting plant samples, we find that annoying as all hell and can end up snapping at people without meaning to.

Then there’s having to accommodate other people’s wishes.  The rest of the group might want to spend 30 minutes photographing a boat I’m not the slightest bit interested in.  Do I use up half an hour of my energy photographing the boat, or do I go off on my own and photograph what I am interested in?  Both my friend and I agreed we often end up leaving the group, going off and doing our own thing in peace and quiet which makes us look anti-social and like we’re not interested in making friends.  Which isn’t the case at all, but M.E. is a very selfish disease – you barely have the energy to do your own thing, let alone accommodate other people’s things, and both my friend and I do everything at break-neck speed because we’re so conscious that our energy is finite and we need to get stuff done before it runs out.

After we’ve finished our botany or photography our group wants to go to the pub for a beer and a natter…………only we’ve used up every ounce of energy we possess.  So, we either go along, sit quietly in a corner white as a sheet and don’t join in because we’ve conked, or we say “no thanks” and the rest of the group think we’re not interested in spending time with them.  It’s a huge dilemma and one I simply don’t have the answer to.

My friend and I both agreed that if we had, for example, a broken leg the group would happily accommodate that.  We wouldn’t be expected to climb stiles, or stand around for ages and they’d accept that at the end of the evening our leg would be hurting so we’d want to go home rather than to the pub.  But when we look completely fine and our health problems are invisible being in a social group becomes a minefield and despite our best efforts there can be misunderstandings and we can end up feeling excluded.

I think my friend and I both came to the conclusion that initially we have to give more information out about ourselves than we are comfortable with, and having done that we have to accept that not everyone will be understanding.  We do have to be more selfish than we’d like – after all, we’re there for our enjoyment and if that means going off and doing our own thing on our own then so be it.  As long as, when we are with the group, we make an effort to be chatty and join in that’s all we can do.  If we’re struggling or feeling unwell, we should say something and when we next meet up we should fess up about PEM and how we’d felt in the days following our outing.  No-one wants to feel vulnerable or pitied, but unless we tell the people we are with about our situation they’re not going to know.

Having a chronic illness in a group situation is never going to be the same as being healthy in a group situation, and it’s normal to feel upset about that.  I think we are often way too hard on ourselves – we can only do what we can do, and other people will either accept that or they won’t.

 

Love me for who I am

I was having breakfast with an elderly, male friend yesterday and he looked at me and said “do you never wear makeup, or jewellery?”.  The question took me aback.  It was 9.45 on a Sunday morning, we’re sat in a cafe in a tiny rural farming village and I had just walked (aka scootered) my dog for 3 miles in the rain – why on earth would I be dolled up?!  So I just looked at him and said “why, do I need adornments?  Am I not perfect just as I am?”  which threw him, because it’s not like he could say “no you look like shit and need artificial help” 😉  I wouldn’t care, but because of my wig my hair always looks immaculate and due to my lovely, unblemished hEDS skin I look 10 years younger than I actually am, which is pretty darned good for a chronically ill 51 year old even though I do say so myself.

My whole life, men have wanted a perfect version of me.  That’s because they are drawn to me because of how I look, not for who I am on the inside.  It didn’t matter to my biological Dad that I was the most intelligent kid at school, and it didn’t matter to my ex-husband that I was the most attractive woman in any room, it was never enough.  I was never enough.  That incorrect judgement, which started when I was a self-conscious teenager, changed how I thought of myself until I was in my forties, and it’s taken until I am in my 50s for me to challenge the kinds of statements my friend made to me this morning.

One of the reasons I have been single since I became ill 25 years ago is that men struggle to accept my disabled life.   Despite being told of my limitations there is constant pressure to join in their healthy life, and early on in my illness I did try.  I made myself horrendously ill going out for dinner in the evenings, going for walks in the countryside and travelling for hours in a car that made me vomit to the point of dehydration….. but not any more.  Y’see, there is never any desire on their part to join in my disabled life.  To sacrifice their precious time off work to lie in bed watching B list movies when the sun is shining outside, or to forgo their annual holiday in Greece to keep me company.  It’s always a very one-sided affair with my needs not being met in order to make my partner happy, and it’s taken a very long time to realize that my needs are just as important as anyone elses.

When we love someone, we have to love them for who they are not what we’d ideally like them to be.  After all, we’re far from perfect and expect them to love us faults, flaws and all.I really don’t know why I’m never enough for the men in my life.  I am a truly exceptional human being who has walked a path so difficult it’s a wonder I am still standing.  And not only am I still standing but I am living with joy, integrity and passion despite all the odds being stacked against me.  I deserve to be surrounded by people who celebrate that, and the beautiful person I’ve always been, and so do you.

 

Singleton v Smug Married

There has been a thread on the ME Association’s Facebook page this week about romantic relationships.  As part of M.E. awareness week, a positive story of someone with M.E. who found love despite their health problems was shared and the headline was ‘M.E. is no barrier to love and marriage’.  However, it caused a bit of a backlash because as many sufferers quite rightly pointed out M.E. is a barrier to love and marriage.  For some it’s a surmountable barrier and for others not, but I think we all agree that chronic health conditions have the potential to affect our romantic relationships or to make it difficult to find love should we be single.

I was in a committed relationship when I became ill with M.E.  However my boyfriend was just 24 years old, had high flying career ambitions (he later became an editor at Sky news in London) and he simply couldn’t cope.  He didn’t want to cope and at his age who can blame him.  So when I became severely affected and bedridden I broke up with him.  I couldn’t have lived with myself if I’d ruined his life, and make no mistake about it I would have ruined his life.  He’s gone on to have the career he dreamed of and his now married with triplets, none of which would have happened had he stayed with me.

For my entire thirties I was bedridden with severe M.E.  I couldn’t even get dressed or brush my teeth let alone cope with a romantic relationship.  The loneliness and longing for a partner at times was an actual physical ache but there was simply nothing I could do about it.  Having said all that, I do have friends with severe M.E. who found partners and went on to get married so it’s not impossible, but it isn’t the norm.  The more severely affected you are the less likely it is that existing relationships will last and the harder it becomes to meet someone new.  That’s just the reality of the situation.

On the thread, there were several women whose partners also have M.E. and they met through support groups.  I find this great but odd, as M.E. affects mostly women and all the support groups I’ve ever been to have been 95% female.  Any men who attended were married because the reality is that men’s marriages do tend to survive chronic illness as it’s less likely that women leave men who are sick.  I also think it must be difficult if both of you have M.E. and the disease affects you in different ways.  Many of my friends have day/night reversal, for example, where they sleep til lunchtime and are awake half the night, whereas I’m the total opposite and am awake at 5.30am and half dead by 4pm.

After my improvement and now moderately affected, in my early forties I decided to try and find a partner.  I live in a sparsely populated rural area where sheep outnumber people 10:1 so it wasn’t likely I was going to bump into Mr Right in Tesco, therefore I decided my best bet was online dating.  I did that for 3 years and met the very dregs of society.  I lost count of the number of middle aged men who sent me pictures of their penises despite the fact we’d never even met, the men who ranted non stop about their ex-wives, the commitment phobes, the philanderers, the deluded fools who thought they were Brad Pitt but whose profile picture was Danny Devito, and the rest who wanted to spend their time white water rafting or climbing Helvellyn, neither of which I could do.  The handful of really nice guys I came across lived literally hundreds of miles away and because of my energy limitations I wanted to see someone for a couple of hours a night but they ended up staying the entire weekend because of the distance involved and it was just way too much for me.  Thinking long term, by the time you’re in your forties you both have established lives with families and jobs and friends and homes and it doesn’t matter how understanding someone is there are practicalities involved and the situation often just doesn’t work.  Maybe if I’d lived in a city I would have stood more of a chance of meeting someone locally, or maybe not.  Again, I’ve read about people who have tried online dating and gone on to meet the love of their life so it is do-able, for some people at least.  It just didn’t work for me.

All this aside, the biggest barrier for me personally in finding a partner is the very careful way in which I have to live.  I have 3 severe health conditions which have to be very precisely managed otherwise my life turns to shit.  I have a routine which if veered from for any length of time sees me bedridden.  I have to be able to sleep and I can’t even bare the dog on my bed at night let alone a snoring, duvet stealing man.  I have to eat a very specific diet.  My brain needs peace and quiet for the majority of the day.  I struggle to do any kind of activity outside my home, let alone something on a regular basis.  Car travel is tortuous.  You get the drift.  I’m not sure how I’d cope trying to fit all that around another person and I’m not sure what another person would get out of a relationship with me – even I find my life frustrating and limiting.  Obviously there are some men who can cope, but they are very few and far between and become even fewer by the time you’re in your fifties and like I mentioned earlier have a well established life.

So, while it’s heart warming to read that people can maintain existing relationships when chronic illness strikes and that singletons can find love despite their limitations we also do have to recognize that for many people this isn’t the case.  Marriages fall apart and the barriers to finding love when you’re sick and single can be overwhelming.  I gave up trying to find Prince Charming several years ago because I couldn’t cope with the constant disappointment (or the weirdos!) so if it happens for me I’m literally going to have to bump into him in Tescos which, considering I have home delivery, is unlikely 😉

 

I need a cave

The more I interact with people the more I want to go and live in a Himalayan cave with only my dog for company.  I’m a very straight forward person and admit I often find people’s behaviour utterly baffling.

There’s a lady at my Camera Club who I’ve always gotten along fine with.  She added me to her Facebook page, we used to occasionally chat at coffee break and then all of a sudden last year something changed.  She no longer liked any of my Facebook posts, didn’t congratulate me on any of my achievements and is about as warm towards me as the iceberg which sank the Titanic.  I have racked my brains to try and work out what I could possible have said or done to offend her and have come up with a big fat zero. Part of me is mortified if I’ve upset her in any way and thinks I should ask her about it, but a bigger part knows I can’t possibly have done anything to warrant being frozen out like this and thinks I have enough stress in my life without her adding to it and I just want to tell her to fucking get over herself.

About 3 years ago I was out taking photographs one gorgeous Autumn day when I met another lady also taking pictures.  We started chatting and hit it off immediately.  We would meet now and again for lunch, added each other to Facebook and I thought we had the start of a really close friendship.  Last summer we met for lunch and she told me about some very serious problems she was having with her marriage.  I didn’t make any judgements, simply supported her and said whatever she decided to do I just wanted her to be happy.  And then she simply dropped off the planet.  Knowing what I did about her situation I was worried sick and so tried to contact her and she simply ignored me.  She’d done the same thing to a mutual friend we had, so I knew it wasn’t something I’d done, but as the months went by I went from being worried about her to being angry with her.  I could see she was still active on Messenger but was choosing to ignore my messages.  If someone cares about you, and is clearly worried about you, all it takes is a 2 second text message to say “I’m fine but appreciate your concern” and you’d be able to stop worrying.  To leave a friend hanging, when they know you’ve recently been in a potentially harmful situation, simply isn’t on.  I have not heard a word from her from that day to this and neither has our mutual friend.

A similar thing happened with an M.E. friend I’ve had for decades.  She was having a rough time and simply fell off the edge of the world.  Many of her friends were worried sick, we all tried messaging her, and she ignored us all.  For over a year there was no word, then I get a fucking Christmas card!  Is it just me who finds that absolutely bizarre?  As with the friend above I’ve gone from being worried about her to being angry with her for ignoring all her caring friends, who have enough sodding problems of their own as we’re all ill, and putting us through months of worry. I’ve butt dialled people by mistake for heavens sake, so it’s not like it takes a huge amount of effort to write one line to say you are fine but are just taking time out and appreciate everyone’s good wishes.  Manners, it seems, are no longer considered necessary.

Having been isolated for many years I value my friends hugely.  I think it’s hard to find others with whom you feel a strong affinity, who make you laugh or who share your interests or view of the world and it amazes me that people value their relationships so little.

The people who I find  most baffling, however, are those folk that think “being honest” and “being real” isn’t actually just being rude and insensitive.  I have a friend who just says everything that comes into his head.  He wraps this up in a parcel of ‘humour’ or ‘sarcasm’ thinking that makes his comments acceptable but I have news for him………..it doesn’t. For example, he told me he was sick of seeing me in a particular jumper, literally 10 minutes after a conversation we’d had where I talked about how hard it was to live on a limited income and how I struggle these days for essentials let alone luxuries.  He is absolutely minted so I’m sure has no concept of trying to live for decades on very little money but that being the case I would have thought he should be more thoughtful of what he says in conversations with me not less.  I would never dream in a million years of commenting negatively on anyone’s appearance, possessions, home or anything else.  The only intention behind these kind of “observations” is to make the other person feel bad and why would anyone want to make their friend feel like crap?  The words “tact”, “diplomacy” and “empathy” seem to be disappearing from our vocabulary.  We all have negative thoughts about other people at times, I know I often do, but I don’t say them out loud because it’s hurtful and because the last time I looked no-one died and made me perfect and in any position to judge.

I simply don’t have the energy to be dealing with crap like this.  I struggle just to get through each and every day – I haven’t got the physical resources to waste on other people’s mind games, insensitivity, thoughtlessness and rudeness.  I really should tackle the lady at my Camera club to find out why she’s pissed with me but, honestly, I have better things to do with my energy.  So I choose to simply walk away from these types of situations and focus on people who are less draining and complicated to be around.