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.

 

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Energy vampires

I was pondering on my relationships with other people yesterday and had a bit of a revelation.  I feel very isolated and alone much of the time and I thought it was because not many people bother with me but that’s not strictly true.  Over the years I’ve had quite a lot of people who want to befriend me but I have held back, the reason being that these people have wanted something from me that I wasn’t willing, or more importantly able, to give.

It feels good when you meet someone new who shares similar issues to you and the tendency is to then off-load all your pent-up anger, frustration and unhappiness on to this new person because you know they’ll understand and be supportive, but I don’t have the energy or emotional resources to take someone else’s emotional baggage on board.  I strive every day to rise above my difficult life and to be as joyful and happy as I can be but it’s hard and takes every ounce of strength I possess – I simply don’t have anything left over to be someone else’s free branch of the Samaritans.

I’m a naturally empathetic person and I hope a good listener but in the past that’s meant that I attract people with problems and many of my friendships have become one way streets with the other person using me as an emotional crutch but not being interested in what’s happening in my life or wanting to listen to my problems.  Initially it felt good to me to be needed which is how I got sucked in but in the end I’ve resented the inequality in the relationship, so these days I’m much more careful about who I get close to.

I’ve had long standing friendships in the past, particularly with people who are also ill, that have sucked me dry emotionally and then when I finally had enough of being there for them when they were never there for me and ended the friendships I was castigated as a terrible person!  How dare I be “nasty” to X when they are poorly, but everyone and his dog seemed to forget that X had been treating me like shit for years and I am also ill!  Not only that, I am single and under huge stress caring for sick elderly parents whereas these ‘friends’ were either married or in long-term relationships or still being cared for by their healthy parents – they already had strong support networks where I have none.   I’m at the age now where I feel confident enough to tell energy vampires to jog on.

I’m very lucky in that my best mate is very emotionally self-sufficient and has her shit together.  That’s not to say that we don’t talk about negative stuff, or our health, or our frustrations because we do………a lot……….but it’s a two-way street.  She talks and I listen, I talk and she listens and although we offer each other advice we don’t expect the other person to fix us.  It feels really healthy to have that in a friendship.

The upshot is that although I have far fewer people in my life that I would like, the people I am close to are good for me and I hope that I am good for them.

 

For the love of dogs

I’ve spent the last few weeks not sleeping well, which is common in peri-menopause.  I woke this morning at 4.30am and couldn’t drop back off, so I lay in the dark listening to a talking book until 5.30am when I was so bored, and so awake, I had to get up.  I turned on the light and Bertie, my Miniature Schnauzer, groggily opened one eye from his bed over in the corner, saw me sitting upright and thumped his tail in greeting.
“Good morning precious boy” I smile at him.  His tail thumps harder and a surge of love washes over me.  It’s been the same routine every morning for the past seven years and never gets old.
I pat the space on the bed next to me and he jumps up.  I envelope him in my arms then hold his face in my hands, gaze into his eyes and tell him “I love that face.  That face is the most gorgeous face in the known universe” before kissing him all over mwah, mwah, mwah.  He sighs with pleasure and as his velvet, floppy ears wobble slightly I could cry I love him so much.

I wish I could love people the way I’ve loved my pets.  Fully, unconditionally and with wild abandon.

I leave him with my parents on a Wednesday night for two hours while I’m at my Camera Club and when I come back and he hears me thudding up the staircase to the apartment he comes tearing along the hallway, eyes shining, tail about to wag off like I’ve been gone for two years.  I kiss his face and tell him “I’ve missed you soooo much” then hug him tightly to me until he wriggles free to run into the lounge to tell my parents “Mum’s home!”.   If he never left my side for another second of his life it would be fine by me.  My Mum grumbles that I don’t greet her like that and I bite back the reply “that’s because my dog has never hurt me the way you have hurt me”.

Is he perfect?  No!  There are days he barks so much I want to rip out his vocal cords.  I have to bribe him to get in the car every single day and over the years he’s stolen so much food he could set up his own shop but I don’t hold it against him, not like I would a person.  Why is that I wonder?  Probably because I know it’s not deliberate or calculated or selfish, he’s just doing his own doggie thing the way nature intended.

Wouldn’t it be wonderful if we could love human beings the way we love our pets?  And even more wonderful if they could love us back the way Bertie loves me.  He doesn’t care how fat I am, what I’m wearing, how sick I am, how much I earn, what kind of house we have, what kind of car I drive or how old and saggy I’m becoming………….he is happy just so long as he is by my side.

I am typing this in bed, with the laptop propped up on a pillow, twisting at a weird angle to reach the keyboard which is making my back scream because Bert is lying between my legs, his head on my thigh content to be full of breakfast and snuggling his Mum.  I couldn’t think of a better way to start the day.

Over my years of illness my pets have kept me alive in a way no person ever could.  They rely on me every bit as much as I rely on them and our mutual need and unconditional love for each other sustains us in a way nothing else can.  All Bert asks of me is that I feed him, walk him, keep him safe and love him and when you think about it that’s all we human beings need: food, a home, to be safe and to be loved.  The difference between us is that when my dog has all those things he’s happy and content, whereas people just want more, more, more and are rarely satisfied – there’s always something or someone better over the horizon.

My pets have taught me so much about what it is to love and be loved.  They don’t hold a grudge when I’m grumpy and shout at them.  They forgive me for not seeing the world through their eyes.  They put up with my cack handed attempts to train them, even when they don’t understand why they have to fetch the ball or not dig up the garden.  They put up with being ignored for hours on end while I do something more interesting and the 1001 other things I’ve got wrong in my care for them.  They instinctively realize that I’m doing my best and love me for trying.

If we could love people the way we love our pets imagine how wonderful that would be.

Love is a verb

I often find people bewildering.  Maybe I’m wired wrong or am just naive but I struggle to make sense of a world in which people say one thing then do the complete opposite.  On a purely personal level as a child who lived in the midst of my parents volatile marriage you receive very mixed messages from people who claim to love you yet keep you in an unhealthy situation which fundamentally changes who you are as person, predisposes you to mental health issues, warps your sense of love in the process and affects all your future adult relationships.  Call me daft but that’s not any kind of love that I can get my head around, particularly from the very people who are supposed to protect you.

The last time I spoke to my biological Father was in 1989.  I was getting married and had asked my Step-Dad to give me away, though had invited my biological Dad to the wedding.  My bio-Dad was really angry and said “but you’re MY daughter and I love you” to which I replied “if you love me so much how come you haven’t been to see me since I was 7 years old?  You’ve only met my fiance once and that’s because we came to see you.  You’re not paying for the bloody wedding my Step-Dad is.  He’s the one who came with me to choose dresses and venues and you don’t even know who my bridesmaids are let alone have met them.  Yet you still think you should be top dog on the day?”  He never spoke to me after that, and neither did my entire paternal family.  His version of “love” and my version of “love” were obviously very different.

I’ve had several long term partners over my lifetime.  All of whom either flirted outrageously with other women or were actually unfaithful.  But apparently they “loved” me too.  I would have thought that when you love someone you want them to feel special.  To feel secure.  To feel like they are the most important person in your life.   Not to feel like they’re second best to some bint you just met in the pub or the receptionist at work.

When I was having the talk to my Mum the other week about her drinking she said to me “but I love you”.   To which I replied “I’ve screamed at you and begged you to stop drinking but did you even ring the doctor and ask for help?  Did you try in any way, even though you knew the stress it was putting me under?  No!”.  I’m not sure you can love your child then hurt them so badly through your actions that you make them ill, as she has done to me.

Have you ever watched Jeremy Kyle or Jerry Springer?  Couples come on where one or both have been cheating and after half an hour of hurling hurt and abuse at each other they’re asked why they’re still together and they invariably say “cos I love him/her”.  Or parents who have fucked up their kids so royally they’re on Jeremy sodding Kyle yet still have the cheek to say to them “but you know I love you!”

The L word is currently a bit too trendy.  We say it at the drop of a hat.  I watch ‘Keeping up with the Kardashians’ and they say it 5 times before they put the phone down and they’re only talking to the housekeeper 😉  But love is a verb.  It’s a doing word.  It requires action, committment, thought and intention.  It is honest, tender, supportive, encouraging, safe and often selfless.  Most importantly you can’t claim to love someone then do something to hurt them.  It’s a contradiction in terms.

 

Adult children of dysfunctional families

My parents split up when I was 7 and I was moved 200 miles away from everything I knew to live with a succession of relatives.  In the first 2 years we moved 9 times, usually after my Mum had fallen out with whoever we were living with at the time and often for good reason (eg. my Nanna used to belt me and if I wanted to read a book I was made to sit outside in the car, in the middle of winter).

I’ve never talked to her about it, but my Mum obviously had mental health issues.  Anti-depressants as we know them today didn’t exist though, so I’m fairly sure she was put on some kind of benzodiazepine probably valium.

I’ve always loved animals but had had to leave my cat behind, so when I was 8 my Mum got me a rabbit.  She couldn’t afford to go to a pet shop to buy one so I’m fairly sure my Uncle (with whom we were living at the time) caught a wild one.  It was vicious its whole life and I never even got to stroke it, let alone cuddle it.  I called the rabbit Whiskey, which tells you a lot about my Mum’s drinking habits at the time.  She wasn’t an alcoholic though – that came much much later.

When I was 9 my Mum met my step-Dad.  It was a volatile relationship from the start and they argued like their life depended on it.  I would come home from school with a sick feeling in my stomach, not knowing if they would be speaking, not speaking, if my Dad would be in a strop because his favourite football team had lost a match the night before or if my Mum would chuck something at him across the dinner table in temper.  Our home with filled with a constant under-current of tension and you could often cut the atmosphere with a knife.

On the other hand, when things were good they were great.  My Dad has the most wicked sense of humour and there were days when everything was hunky dory.  But I always knew it wouldn’t last and even when I was laughing I’d be waiting for someone to say the wrong thing and for it all to kick off again.  They were both wonderful with me though and never shouted or raised to a hand to me, but the consequences of living within their toxic relationship and with their almost split-personalities changed me forever.

Of course our home life was a big secret and I instinctively knew I wasn’t allowed to talk about what went on within our four walls.  To the outside world my Mum was lovely and all my friends envied our close relationship.  My Dad was a bloke’s bloke who played darts, loved the footie and would help anyone at any time.  If I meet people in the street even now who know him the first thing they say to me is “he’s a grand fella your Dad” and, when he wasn’t losing his temper like a 5 year old child, I’d agree with them.

Add to the mix the issues I had with my absentee biological Father, my giftedness and the emotional depth and sensitivity which comes along with that, the pressure I was under at school to achieve academically because I was gifted, the lack of any adult in whom to confide and it comes as no surprise that I spent most of my teenager years clinically depressed and by the time I was 18 was on anti-depressants and regularly sat in a Psychologist’s office trying to make some sense of the world.  I couldn’t wait to become an adult and get the fuck away from home.  I loved my parents but when I finally had a house of my own I had peace and stability and could live without the daily anxiety of wondering what was coming next.

Fast forward 30 years, I’m now 50 and both my parents are ill and in need of huge amounts of help.  Consequently I’ve been drawn back into their lives and back into their relationship dramas which, despite being married for 40 years, have never changed.

As if all that weren’t bad enough, my Mum was forced to stop smoking when she had half her lung removed 6 years ago so in order to get through the days her drinking took off in earnest.  She became an alcoholic who was drunk every day by noon.  This brought back hugely negative emotions from my childhood and I really struggled to cope with it, so much so that a year ago I paid to see a counsellor.  She was helpful and I did manage to come to some sort of terms with the situation.

In the summer of this year my Mum contracted Guillain-Barre Syndrome and was in hospital for 3 weeks.  During that time she dried out and I lied to her and said the Doctors had told me that if she drank when she got home she would die, so she didn’t.  The last 3 months have been fantastic.  She has been back to the Mum I’ve always known, without the nasty bullying of my Dad (who is in the early stages of dementia), the finding everything hilarious because she’s plastered and who rings me lucidly every day for a chat and a gossip.  Over the past few years I’ve really missed the friendship my Mum and I have always had and it was wonderful to have that back.

But of course she wasn’t receiving help for her alcoholism, so I knew it was just a matter of time before she fell off the wagon.  She was housebound for the first 2 months after coming home from hospital, but the second she told me “I’m going to go with your Dad in the wheelchair to Sainsburys on Friday just to get out of the house” I knew it was only a matter of time.  And sure enough, 3 weeks later I turn up at the house to find her drinking a glass of wine.

She’d only bought one of those little 18cl bottles, and her excuse was “I’d like a glass of wine with my Christmas dinner but don’t know which one to choose, so I thought I’d try this little bottle to see what it’s like”.  I felt sick.  That she would be wondering what she could drink on Christmas day when it was only 14th November tells you everything you need to know about her mind set.  So I sat down and, as gently as I could bearing in mind I was in bits, said that I loved them both but I was going home and I was not coming back.  And I got Bertie and my handbag and left.

That was on Tuesday and I have felt horrendously ill ever since.  I wake up with a huge sick knot in my stomach, can’t eat and feel so exhausted I’m like a rag doll.  Years of living with the anxiety and unpredictability of my parents’ behaviour seems to have come to a head and I feel floored.  I have spent 3 days spontaneously sobbing and feel on the edge of some kind of breakdown.

It would be so easy to simply walk away, but they are old and sick and my poor Dad really doesn’t need this drama.  So I have rung my Mum and told her that I love them both, and I will take care of them, but I simply cannot visit them – not for a while.  Things are going to have to change I’m not sure what the new future looks like yet.

They depend on my hugely, I have been the glue that’s kept our family together, and I know they will be terrified I am going to abandon them, which I would never do because I couldn’t live with the guilt, but there are going to have to be new ground rules.  I have felt responsible for keeping them on an even keel my entire life and I am too fucking tired to do it anymore.  That I am ill myself seems to totally pass them by.

In not visiting them, however, I have no-one to look after Bertie, my dog who is a rescue with severe separation anxiety and who can’t be left on his own.  That means I can’t go to my Camera Club which is my passion and often the only thing which keeps me going.  It’s the only time I get out of the house all week, the only time I ever see anyone other than my cleaner and the post man and is the only social life I have.  I feel such rage that my Mother’s selfish behaviour has robbed me of the only joy I have in life.  A life which is devoid of any pleasure and any of the normal things healthy people take for granted.

Sometimes I wish she were dead.  The second she retired from work she sat in a chair, watched telly, smoked and drank and basically waited to die.  There are times when I wish this would happen and put us all out of our misery.  She has been unhappy her entire life and has made me unhappy along the way.  Then I think about all the times she’s helped me, comforted me, been there for me, loved me and am wracked with guilt.

So, that’s where we are today and I’m in complete turmoil.  I feel so poorly I can barely get dressed and am constantly on the verge of tears.  It’s like every emotion I’ve ever felt towards my parents has come to the surface and I can’t push them down any more.

Please don’t tell me to get help, contact al-anon or anything else.  Trust me when I say there is no avenue I haven’t been down.  My Mum doesn’t want help.  There is no al-anon where I live and in any event I don’t do the bullshit “higher power” thing.  My parents have what they need to live: a cleaner, carers to help my Mum shower, a gardener, their meals provided.  But as I’ve mentioned before it’s all the stuff that paid help can’t do which is the stumbling block, like finances, paperwork, mending the seam on my Mum’s nightie, submitting electric meter readings, grocery shopping, talking to medical staff as neither of my parents are capable and 1001 other things.  I feel so trapped, and resentful and guilty.

There aren’t any easy answers.  Walking away and leaving a parent with dementia is not an option.  Carrying on as we always have is not an option either.  I have no clue what to do.

Great Expectations

I hope I make a pretty good friend and neighbour.  Because I’ve gone through so much, and can easily put myself in other people’s shoes, I’ll offer a helping hand to someone in need if it’s at all humanly possible.  I have often felt entirely alone in my struggles right from childhood and would have given my left arm for someone to help me.   I know intimately what it feels like to have no-one to turn to and to think that no-one cares, consequently I’ll drop everything and go to someone in need.  Even people I don’t like or who have shown me a complete lack of empathy in the past (I do draw the line at people who have hurt me in the past though – they can go swivel).  On the whole, though, I treat others the way I’d like to be treated.

Because I expect so much of myself, however, I have high expectations of other people.  And it’s caused me no end of disappointment.  The majority of folk, in my experience, are shit at stepping up to the plate and their self-interest comes first, second and third.

My neighbours are, on the whole, lovely people and I get on well with them.  When my Mum was in hospital the other week they said “we’re here if you need us, just ask”.  So I took them at their word and asked if they’d look after my dog one day while I visited her.  “Of course we will, just bring him round” they replied, which was such a relief because at the time my Mum was desperately ill and knowing Bertie was being well looked after was a huge weight off my mind.  A week later my Mum was still in Hospital so I asked my neighbours if they’d have Bert again, just for the afternoon so that I could visit her.  “I’m really sorry Jak, but it’s a nice day so we’re going for a drive up the lakes” came the reply.  They are pensioners, who could go for a drive up the lakes any day of the sodding week, month or year.  They could even have taken Bertie with them – he loves to be in the car and they could have stopped off for a nice walk with him.  But no.  My Mum was seriously ill in hospital, I was having the worst few weeks of my entire year, but their need for a jaunt came first.

I’ve lost count of the times in my life that people have offered help then backtracked.   I remember having a relapse a couple of years ago and was really struggling to take Bertie out for his afternoon walk.  Another neighbour rang and said “don’t worry about Bert, I’ll take him out for his afternoon walks this week” which was fabulous.   Only she wanted to go at 5pm, when she knew fine well that Bertie goes for his walk at 2.30pm.  This is so that he’s home, sorted out and fed by 4pm which is when I go to bed for my afternoon rest, every day being carefully managed around my energy limits and doubly so during a relapse.  5pm is my very worst part of the day, not to mention the fact that Bert would be totally desperate for a poop by then and it would be well past his dinner time.  If that were me, and I were offering to do a really sick friend a favour I’d just say “what do you need?” then do it.  I wouldn’t look at my schedule and wonder how I could fit their crisis in without it affecting my day in any way.   Help, it seems, is conditional on your dire need not interfering with someone else’s leisure time.

Every now and again, though, someone surprises me and while my Mum was in hospital one person was really there for me.  The lady I pay to walk Bertie in a morning said that she would have him any time, and she meant it.  Despite having 3 jobs and 2 kids she had him for four whole days for me and didn’t bat an eyelid.  I’m quite tearful at how much she helped me out, even though I’m sure it made her already hectic life harder.

It’s been said to me, many times, that I need to lower my expectations of other people but I’ve no intention of being a shit friend and neighbour just so that other people can feel less guilty about their own selfish behaviour.  I don’t need to lower my standards, other people need to raise theirs.

 

Friendships

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

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

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

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

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

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

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

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