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.

 

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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.

 

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.