Tag Archives: friendship

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.



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.

The power of words

People never cease to disappoint me.  I have no idea where the current trend of saying everything that’s on your mind has come from, but all it does is create conflict.  We seem to have lost the ability to think of anyone else’s feelings but our own and tact seems to have done a runner.

I’ve had a weird idea for a photo in my head for a while, so this week I put it into practice.  It involved someone dressing up in a long dress and a velvet cape to give the illusion of a by-gone era and I couldn’t find a volunteer, so I volunteered myself.  For Christmas I’ve treated myself to an off-camera flash so before starting on my complicated photo I wanted to do some practice shots to try it out.  I’ve never used flash before and haven’t a clue what I’m doing but I learned a lot from my little trial.  Having said all that, trying to light and focus on a model who isn’t actually there because they’re behind the camera was tricky!  I had to keep fiddling with the settings on my camera, then dashing round to sit on a stool, focus my camera with a remote shutter release, take the picture, then get up again to check the image.  I must have spent nearly an hour fiddling around trying to get the new lighting right and by the end of it I was sweating like a  pig on a spit.

I don’t usually put photos of myself on my blog, for the reason that there are a lot of fucking weirdos out there who could save the image and use it for god knows what purpose.   Why on earth anyone would want to download a photo of a total stranger off the internet is anyone’s guess, but I know it does happen and a friend of mine had photos stolen off her blog and found them being used on t-shirts!!  However, the whole point of this post is what a “friend” said about my picture so I’m going to break the habit of a lifetime and include it:

selfieThis wasn’t meant to be a portrait of myself – I was just practicing my lighting for another shot.  I put on a little eyeshadow and lipstick so I could see how colour came out under my new flash, but other than that I’m wearing no foundation, blusher or anything else – in fact, I don’t think I’d even washed my face for two days previous to this picture being taken and put the eyeshadow on ontop of the muck 😉  It has not been photoshopped or airbrushed in any way, apart from lightening the blue in my eyes a little.  And bear in mind I’ve been ill for over two decades, hardly sleep, spend every day in pain and exhausted to the point of collapse and will be 50 this birthday.  So, knowing all that I think it came out OK.

I put my photos on Facebook for my friends to comment on as some of them are also into photography and give me invaluable feedback on my technique.  Within seconds of this image being put on Facebook I received a text (why did she text me, why didn’t she comment on Facebook?) from a “friend” who told me the image was awful, I looked miserable, I looked years older than I am and to basically get rid of it (and she used exclamation points to ram the message home).

Why would someone say that, particularly someone who is supposed to be my friend?  What was her intention in telling me she hated my portrait and I looked like shit, because the only reason I could think of for saying that to someone is to make them feel bad.  What did she expect my reply to be?  “Gosh, being as though you hate it I’ll delete it immediately.  And of course I will run any photo past you in the future in case you don’t like it”.  Or “I’m sorry I look old, I’ll book myself in for a some Botox and fillers toute suite or maybe you think I should go the whole hog and have a face lift”.  Just to spite her I feel like printing it off as an A3 poster and putting it on my lounge room wall 😉  Try taking a close-up picture of yourself, without makeup and under harsh studio lighting and lets see how your fifty year old face turns out – there’s a bloody good reason we only see 20 year old flawless models in advertising campaigns and that’s because they’re the only people whose features look good under those conditions and even then their images are airbrushed to within an inch of their life after the event.

I was always taught that if you have nothing nice to say about someone, you say nothing because to say something nasty is hurtful.  It seems these days we’ve lost the ability to consider the power of our words and how they affect others.

I’m helping with our Camera Club’s beginners group this year and this includes having to critique people’s photos.  Some of the pictures are absolutely dreadful but, although I do give constructive criticism and tell someone how the image can be improved, I always always say something positive because you can decimate someone’s confidence by telling them how crap their picture is and I’m in the job of making people into better photographers, not making them feel so shit about their work they never pick up a camera again.

There seems to be a mind-set these days that people are “entitled to their opinion” but y’know what, they’re not.  Not if their opinion is hurtful, belittling, spiteful or just plain nasty.  Your friends are supposed to lift you up, not make you feel like crap.  I wouldn’t even intentionally be nasty to a stranger as I don’t know their circumstances or the impact my words will have – they could be on the brink and my being mean could tip them over the edge.  The exception is if they’ve already been hurtful to me, and then to be fair the gloves are off and they deserve what they get!

My final image (below), and the reason I was practicing dressed up in a cape, isn’t my most successful ever but it’s all a learning curve – not every picture can be a competition winning masterpiece.  This composite picture was incredibly hard to achieve and I learned much in doing it, not least who my friends are!


Be careful out there

I was going to do my customary weekly roundup post today but I have something more pressing on my mind.  It was a friend’s birthday this month but I didn’t want to send her a gift, although I did.  I didn’t even want to send her a card, the reason being our friendship (if you can call it that) is at the end of the road because I no longer trust her.

I met this person about 16 years ago through an email support group for people with M.E. from which we both suffer.  She was intelligent, sweet and creative, and we were the same age and both single.  We had several online friends in common and soon became buddies, emailing each other and eventually regularly chatting on the phone.  We even met up and went on a short holiday together which I really enjoyed.

However, for some considerable time now there have been alarm bells.  This person knows I’m on Facebook, and that several of our mutual friends are on my friends list, yet she’s never sent me a friend request.  I know she’s on Facebook because some years ago I searched for her email address thinking I’d add her, but although her profile contains her real first name it has a different surname, so I didn’t even tell her I’d found her.

She’s been ill nearly as long as me and been in receipt of sickness benefits from the Government, but several years ago the DWP contacted her to say there had been a problem with her initial application and she actually wasn’t entitled to receive the benefit and had to pay it all back.  So she suddenly had a huge debt to repay and, being too ill to work, was also without her main source of income.  Despite that, she decided to move house.  The property she bought, however, cost over £100,000 more than the property she sold so she had to have a huge mortgage.  How did that work?  What bank lends £130,000 to a person with virtually no income?  She obviously had an income source she wasn’t telling me about, which of course is her prerogative, but she constantly pleaded poverty.  She made a big deal of telling me she bought all her clothes second-hand from Ebay or charity shops and had no cash for a newer car.  Big red warning lights were flashing.

The place she moved to was hundreds of miles from where she’d been living, which again I thought odd as she didn’t know a soul.  But it turned out she had a brother living there who she’d just never mentioned who apparently has some serious mental health issues.  She’s told me that mental health issues run in her family (yes, I know this should have struck warning bells but we all have weird family members and it’s no reflection on us!).

The new house turned out to have some major structural issues and to cut a long story short she’s just spent tens of thousands of pounds rectifying them.  Apparently she was given the money by family members who I’d been told she didn’t get along with, so it seems fair to say she comes from a well-off family and is closer to her siblings than she’d led me to believe, which is fine but why lie about it?

Not only did the new house have loads of issues, her neighbour (an elderly married committed Christian) was apparently letching and spying on her and she involved the police, telling them he was a peeping Tom.  The situation put her under enormous stress and she installed CCTV cameras to keep an eye on him.  I’ve got to be honest, although I tried to be supportive I wasn’t sure what had actually happened or that I believed her version of events.

She’s recently had a handy man who’s done lots of work in her home steal from her.  Which is horrendous but at the same time all a bit weird.  The police have apparently told her to go and search his outbuildings secretly while he’s not there to see if she can see any of her belongings and if she finds anything she has to let them know and they will interview him.  Hmmmm.  I’m fairly sure no police force would tell a vulnerable, sick single woman to search a suspected thief’s premises (isn’t that actually illegal?!).  She then told me this handyman has guns and that’s how they met – he’d taken her on a 6 week course to learn how to shoot.  Er, why would she need to learn how to shoot?  I thought she was horrendously ill with M.E., at least that’s the reason she’s given me for only ringing me once this year.  And as if all that weren’t weird enough, this handyman is apparently in the support group for ESA (ie sickness benefit) yet she’s employing him to do work for her.  And he’s well enough to shoot vermin on acres and acres of farmland.  And she told me he does handyman jobs for a local Magistrate, who knows he’s claiming ESA but employs him anyway.  Really?!

Even if I could swallow all this drama and half-truths, as I mentioned above she’s only rung me once so far this year.  This is apparently because she’s had so much stress with all the work being done on the house, and then the theft, that she’s just been too ill to be in touch.  However, when I bought my little cottage and found 2″ of sewage water under my lounge floor, and needed a new roof, and found that I had a bulge in the entire side of the building that my surveyor hadn’t even noticed and I had to sue him which took 2 years, I still managed to go on holiday with her.  I still managed to email her when my Mum nearly died from her lung surgery, then her heart attack.  I still managed to keep in touch when I was having several anaphylactic episodes a day, then travelled 600 miles alone three times to get diagnosed with MCAD.  And I’m single too, and have 3 diseases not 1, and on top of all that am looking after my parents and have to cook every single thing I eat from scratch.   So the “I’m ill y’know!” excuse just doesn’t wash with me when I know she goes to various classes, has various friends she does stuff with and goes on several holidays a year.

She texted me on her birthday to thank me for my present, but said she was too ill and exhausted to ring.  Yet she spent her birthday meeting a friend in the morning, then going to a garden party in the afternoon – obviously really poorly then.  We finally spoke yesterday.  She texted me at 11am to say “fancy a chat this morning?  Only I’ve lost my address book and don’t have your landline number, so you’ll have to ring me.”  Modern phones have contacts lists built in them FFS, she must think I’m totally stupid.  However, I texted straight back that I would ring her which I did – but the call went straight to answer phone!!  I did leave a clearly-pissed-off message to say “I thought you’d pick the phone up being as though you’ve just asked me to ring you!”.  She then waited 10 minutes to call me back, even though I’d told her I had to go out at 11.30am.  It was the last fucking straw if I’m honest.

I seem to’ve met my fair share of women online who are secretive and untruthful.  As regular readers of my blog will know, in 2014 I fell out with a long time friend I’d met online.  In our 16 year friendship we’d never spoken on the phone and I’d never seen a photo of her.  Neither had any of our dozens of mutual friends.  Looking back with the benefit of hindsight she could have been anyone – she might not even have been female.  She wouldn’t send text messages because she said the signal affected her, yet she’d get her husband to text me who was sat right next to her – or did she?  Was it her texting and saying it was her husband?  She moved house without telling me (or anyone else) which was bizarre.  She didn’t get on with her Mum and told me she used to dread her visits, yet when she died this person spent 2 years on Facebook writing posts about how much she missed her “darling Mum” eliciting loads of sympathy from people who didn’t know the real situation.  The same happened with a friend, who she hadn’t spoken to for 4 years, who died and this person was writing posts online about how much she missed her “darling sister-friend” again getting loads of support from people who didn’t know the dead friend had ignored her for years.  And dozens of other little, and not so little, stuff which all added up to secretive, strange behaviour and outright lies.  Yet I was castigated for pointing this stuff out!  This person is so “lovely” and believable that no-one takes a step back and questions her story and when I did I was made out to be the Devil himself and unfriended by the majority of our mutual mates.

Another friend I met through the same online support group I used to talk to every single day.  She was originally from Pakistan and, although she was hard work at times and very demanding, I felt for her being ill in a foreign country where she hadn’t had chance to make friends.  She ended up going into hospital and myself and 2 other friends sent her some flowers, which were returned because there was no-one of that name in the hospital. Turned out she’d given us all a false name which is fine, we all use pseudonyms online to keep us safe, but to go 4 years without telling your closest friend isn’t right.  It also turned out this person came from a very wealthy family in Pakistan and I’m fairly sure she’d fed me an absolute load of bullshit about her family situation and her need to escape an arranged marriage.

There seem to be a lot of fantasists out there, who create personas for themselves online which I honestly think they end up believing themselves.  There are also a lot of people out there with mental health issues, who can appear completely normal and reasonable online but who in real life have some serious problems.  And when you’re a kind, compassionate, open person, who takes people at face value and thinks everyone is as honest as you are, you tend to attract these people like a magnet, then when you find out that someone you have told everything about yourself to has been dishonest about their lives it’s deeply hurtful.

I’m now much more wary of people I meet online, even if they seem “lovely”.  As Doctor Phil so wisely says “people who have nothing to hide, hide nothing”.  I am distrustful of people who have Facebook pages that don’t contain family members or personal information, especially if they’re on my friends list because my Facebook page contains details of my real life.  No offence to all you lovely people out there, but I’m not going to give my personal details out on my blog because I have no idea you are who you say you are and I’ve already had a couple of run-ins with nutters and some with people who are just plain rude.  It’s a sad fact of life that the anonymity of the internet allows people to make up any persona they like, act any way they like and tell any lie they like without consequence – well, apart from hurting nice people like you and me.


Christmas Wishes

I had no idea when I started my blog 2 years ago how much it would come to mean to me.  It started off as a way of chronicling my battle with Mast Cell Activation Syndrome as I could find so little information about it online.  By simply writing about my life, struggles, triumphs, what worked and what didn’t, I hoped it would help maybe just one other person to not feel so alone.

Along the way it’s turned into so much more.  Here is a place I can talk about my illness without it upsetting those closest to me.  After 20 years I’m sure my nearest and dearest are bored with hearing of my sick world and have run out of things to say to me to make it better.  There are times I get angry about my lack of support from those who know me best, and this year in particular I’ve struggled with the failing health of my parents, the ensuing physical effort needed to care for them and all the emotions this has brought to the surface.  Living on my own I have no-one to discuss these things with, so I’ve turned to my blog.  There have been times, I have to be honest, that I’ve been shocked and upset at the response from my readers, but much more often I’ve been staggered by the support you’ve all given me and bolstered by kind words of wisdom and understanding.  I truly appreciate the time, energy and effort your comments to me take.

Through blogging I’ve made lovely online friends I cherish dearly.  It really is only other sick people who truly understand your situation without you having to say a word.  I also hope we’ve had a few giggles along the way 🙂  I apologise, again, for not having the time or energy to be able to email people individually (much as I would want to) and for not taking as active a role in your blogs as I would like, but I do try and respond to all the comments made here.

This is just my way of saying thank you to all my readers for your friendship, help, advice and support – I couldn’t do it without you.  Love to all and a very……..

Follow-up post

I just wanted to thank everyone who commented on my blog post about my fall out with my best friend.  I really do appreciate all the support and your very wise observations helped me get my head around this sad situation.

I found writing the post really cathartic…….and enlightening.  It wasn’t until I read the draft over that I realized N had been letting me and our friendship go for a very long time.  I’m sure if I said that to her she’d deny it, as I don’t think it’s been a conscious thing, but looking at the bare bones of what happened it’s very obvious I was way down her list of priorities and that her Aunt had taken my place.  Her anger and upset over my blog post was just the excuse she needed to break up with me (for wont of a better term) and if it hadn’t have been that it would eventually have been something else.  These things happen.

I’m not devastated or anything in case any of you are worried about me.  I’m sad, but in the past few years the friendship had taken up so little of my time it’s not like it will leave a huge gaping hole.

I still love my friend and want nothing but the best for her and her family.  I was very fortunate to have her in my life for the past 20 years and wouldn’t have gotten through the tough times if it weren’t for her support and laughter.  But it is time to move on.

I actually had a fabulous weekend.  Took myself off to the city on Sunday while it was quiet and had a mooch round the shops for an hour.  This is going to sound absolutely nuts but I felt totally joyful.  And very free.  Like a huge weight had been lifted from my shoulders.  Reading back my post about my friend made me realize just how resentful of the situation I’d become and how distant I felt from her, while at the same time pretending that everything was fine.  It really wasn’t fine, and it hadn’t been fine for………well, ages.

This is the 2nd long-standing friendship I’ve lost in the past 12 months, and I realize that for me the resentment in both relationships has been the same – that of not being heard and my needs not being met.  I have a challenging life and I think it’s almost impossible for a healthy person to have any understanding of that, try as they might.  And I also think it’s almost impossible for a married person to have any understanding of what it’s like to live alone as I do.

I’ve been both healthy, employed and married, therefore it’s fairly easy for me to see my friend’s lives from their perspective.  But they have no way of seeing life from my perspective as they’ve never lived it.   It’s no-one’s fault – it just is what it is.

Maybe solitude is my bag this time round.  It’s certainly been a theme since I was a wee girl, despite my best efforts to change it.  So instead of wishing it were different I’m just going to relax into it.  I’m going to cherish it and enjoy it and look at all the things it offers instead of all the things it lacks.

“And whether or not it is clear to you, no doubt the universe is unfolding as it should.”
Max Ehrmann

Another friend bites the dust

In recent weeks my  best friend and I have fallen out.  It’s taken me some time to write about it because, to be honest, I simply can’t get my head around the situation.  This is a very long post and includes some whining and self-pity, so if that’s not your thing feel free to skip it.  And if you do read, please no judgemental comments telling me everything I did wrong – I’m so not in the head space for that right now.

N and I have been best mates for 22 years, despite the fact we live at opposite ends of the country.  I knew her before she was married or became a Mum, and she knew me before I got sick.  I’ve mentioned her in glowing terms many times throughout my blog and I’ve always told her what her friendship means to me.

When we were younger we spoke all the time and I visited her down in London as much as I could.  Things changed when she had her first child, as it was around the same time I became bedridden with ME.  Yet despite the changes in both our lives we worked at keeping our friendship alive.  Well, it wasn’t work…………I loved her and thought of her as my sister.

She became a Mum to 3 boys, and things changed again when they all started school and her husband took a job 100 miles away and was only home on weekends.  It was decided we would only speak between 9am-3pm Monday –Friday when the boys were at school as her evenings were so busy, and I wasn’t to ring on weekends as that was her time to spend with her husband.  Fair enough, although for me weekends were always my loneliest time.  I used to really hate Sundays, when everyone was with their families and I was alone in my bed.

Eventually my friend got a part-time job, which made the time we could contact each other even more limited and we got down to talking once a week for about an hour.

Further down the line they moved to a huge house which took a lot of looking after.  My friend couldn’t cope with the kids, her job and the house, so she gave up work and was a stay at home Mum.  I thought it meant we’d be able to chat more, but for some reason I can’t fathom trying to find time to speak to her got even worse.

By this time my health had improved and I was no longer bedridden.  I started to have my own commitments  and I remember my friend saying jokingly it was annoying to have to think of my schedule as well as her own, as when I was bedridden she could ring any time and always knew I’d be home!

For me, speaking to my friend even for an hour a week was a priority.  No matter what I was doing (commitments to my Mum and walking the dog aside) I’d just drop it and chat to her – let’s face it, it was more important than dusting or doing the bloody ironing.  Yet her time for me seemed to get less and less – there was always something she was busy with.  To try and quell my occasional resentment I’d rationalize the situation in my head, the gist of which was I should be thankful she was still my friend, as she was the only person who’d stuck by me during my entire illness.  And I am grateful.   She has been a really good friend to whom I told everything.

During the last couple of years, as my Mum became more ill, my Dad’s mental health declined and I adopted Bertie, my own life has become extremely hectic.  You have to remember that while healthy people are on the go from 7.30am to 10pm each day, I have to cram everything in before 3pm, because after that my energy is spent and I’m in bed.  It got so bad I was feeling overwhelmed, and made up a schedule for my week to make sure I got everything done which, btw, included time set aside to speak to my best mate.  N was really quite sarcastic about this, implying I didn’t know what busy was.  My resentment grew, because although she has three kids the eldest is 20 and a grown man, the middle one is 17 and the youngest is 13, so they’re not exactly babies.  I’m not entirely sure what she thought she was doing in her day that was vastly different to mine and I was doing it all as sick as a dog.

Last year they moved area, her husband changed jobs and they bought a much smaller home.  Her children are all but grown up and her husband was now home at 6pm every night.  I thought finally we would have more time for each other.  But it got even worse and I still can’t work out why, bearing in mind she still wasn’t working.

She did, however, move 6 feet away from her aunt to whom she’s very close.  She seems to speak to her several times a day and they rarely go a day without seeing each other.  I tried not to be hurt by the fact she had plenty of time for her aunt and her cousin, neither of whom were subjected to the 9am-3pm or weekend rules, yet less and less time for me – but I’m only human and I didn’t always succeed.

When I had my first Mast Cell appointment last November in London I stayed down for 3 days, the first night in a hotel and the second two with my friend.  She invited her aunt round to meet me at 4pm, which was lovely.  Then the aunt was invited to stay for dinner, and we all sat round the dinner table with my friend and her aunt chatting about people I didn’t know and her aunt not even looking in my direction.  After dinner at 8pm I retired to lie on my bed as I was exhausted, but did my friend come and up lie quietly with me for a chat?  Nope.  She stayed downstairs with her aunt who finally went home at 10pm.  I hadn’t seen my friend for 18 months, and she could have seen her aunt the other 363 days of the year.  Got to admit, I was seriously hurt.

To make matters worse, the next day I was leaving at 2.30pm but my friend bogged off for an hour to take her aunt to the Dentist, despite the fact her aunt can drive, has a daughter of her own, and in any event I’m sure there are taxis and buses where they live. I know I spent a lot of time in bed while I was there, but in the previous 20 years I’d barely been further than my nearest town, yet here I was 300 miles, 2 trains and a tube ride away, and the effort and travel had really made me feel poorly.  I hated myself that I couldn’t be a perkier, more chatty, more fun friend.

In the following 2 months I had to make the 700 mile round trip to London twice more, once for my blood tests and the second time for my follow up Mast Cell appointment.  Neither time did my friend even offer to come and meet me at the station for a coffee, let alone go to the appointments to keep me company.  She does live some way out of London, but visits the city regularly as her parents live there.  Thinking about it, if the roles were reversed and she was single, sick and travelling alone from London to Carlisle for a really important medical appointment wild horses wouldn’t stop me from meeting her off the train, making sure she go to the appointment OK and going in with her for moral support.  It was the beginning of the end for me.

Last month we went 3 whole weeks without speaking as my friend was so busy.  The first week I got a text apologising.  The second week I got a text apologising. The third week I didn’t even get a text.  Around the same time I wrote this blog post about how lonely I’d be after my Mum passes away and how my current friendships won’t fill the gap.  My friend doesn’t subscribe to my blog so I knew she wouldn’t read it.  Which again is weird – nearly 300 total strangers follow my every word, yet my best mate can’t be arsed.  However, despite the fact she hadn’t even had time to text me all week,  and she only dips into my blog now and again, she did read it and her reaction kind’ve stunned me.

Did she ring me, upset, angry, hurt?  Nope, though she did send me a very lengthy text message saying she was “gutted”.  About what?  Well, the fact I’d expressed my feelings about our friendship on a public blog for one (though I’d mentioned her a dozen times previously and she’d never had a problem with it before).  She was also hurt that “our entire friendship is based on me feeling grateful she had stuck by me”.  I bloody hate when people catastrophize events to suit their own ends.  I didn’t say this at ALL.  I did say I couldn’t base my continuing friendship on gratitude, but I did not say that my entire 22 year friendship was based on this.  If she’d bothered to ring me and ask me about it I would have explained it more fully to her.  The thing that upset me the most, though, was that not ONCE did she say she was upset I felt so alone, or that she was worried our friendship was slipping away.  Not once did she apologise for not having any time for me.  Not once did she acknowledge my feelings at all.

I have to own my part in this.  Naturally if I’d known she would be reading this particular blog post I would have worded it differently.  I hold my hands up to being completely tactless, but I’m not sure anything I said was so vile it was enough to end a 22 year friendship over.  Or maybe I’m wrong and am just totally deluded?

The very next day her husband unfriended me on Facebook.  After 20 years.  I hated him for that.  I have never in 22 years deliberately hurt my friend.  We have never before had a single cross word.  Yet he has hurt her in ways I find inexcusable, including having an affair when the children were all really tiny which absolutely shattered her.  I could cheerfully have stopped speaking to him after that, but I didn’t.  I respect the fact he’s my friend’s husband and if she could forgive him it meant I had to.  I have a sneaking suspicion that he’s always been extremely jealous of my relationship with his wife, as he has never had a single friend let alone a best friend, and I’m sure he’s delighted I’m out of the picture.  And I’m not being churlish in saying that, I actually mean it.

I didn’t reply to my friend’s text, as I was too hurt and angry and needed a chance to calm down.  After about a week I emailed her explaining from my point of view what had happened, including the incident when I went to say with her last November.  The email included an apology that my blog post had hurt her, but I did explain that I didn’t think she’d be reading it.  I didn’t get a reply, and a few days later her son (to whom I’ve always been close) also unfriended me on Facebook.  I have no clue what they’ve said to him, and if I’m honest I’m more upset about that even than losing my friend.

The following week it was my birthday and I didn’t receive so much as a card.  It was then I realized that, for her, the friendship was obviously over.

I still don’t really know what I did that was so unforgivable that a 22 year friendship has been lost.  In fact, I don’t think I’ve done anything at all.  I had no clue my friend would read my blog post, and in any event it didn’t say anything that was so horrendous it should cause them all to stop speaking to me.  All I did was say I felt lonely, was worried sick about the effect losing my mum was going to have on my emotional and mental health, and I felt like my friend didn’t care enough to find time for me.  If the shoe had been on the other foot, and I’d inadvertently heard my friend say that, I’d have been devastated that she felt I didn’t care about her and I would have asked her what I could do to make the friendship better!

The entire friendship I’ve put my needs second to those of my friend.  I understood when she had small children and was busy.   I understood when she had a job and was busy.  I understood when she had a big house to take care of and was busy.  But I’m not sure the understanding went both ways.  Did my friend understand that for 10 years I wasn’t busy?  That I lay in bed day in and day out  totally alone?  Did she understand that for 6 years I renovated my house, single handedly, while being extremely ill yet still found time to talk to her?  Is there any comprehension of the time and effort involved in cooking every single thing from scratch, looking after my parents, taking care of the dog, the house, shopping, ironing, cleaning, washing…….all totally alone in only 7 hours a day and with not one, not two, but three exhausting and painful diseases yet STILL making speaking to her a priority?  Did she, just occasionally, chat to me in the evenings and at weekends because it was the best time for me?  No.

In her text, my friend accused me of “just cutting people off” if I had a problem with them.  I was really upset about that too.  Number 1, my best mate isn’t “people” – she’s been like a sister to me for over 20 years.  And Number 2, I spend years and years making excuses for people (like my Dad) and trying to see the world from their point of view before getting to the stage where I feel so hurt and upset I have to say something.  And every time I’ve ever said anything the other person has stopped speaking to me.  I’m not sure how that’s my fault?

She’s right in one respect though, and that’s after someone has deeply hurt me I have the ability to simply cut off my feelings and ties without a second’s thought.  It hadn’t gotten anywhere near that stage with my friend, but after a month of her not even bothering to contact me or make any attempt to patch things up, I’m there now.  I’m not about to beg someone to make time for me or to be my friend – it’s something they should want for themselves and if they don’t then I can’t force them.  I have enough self esteem to know that, sick or not, I make a good friend.  And I also know she’s going to regret chucking that away.