Tag Archives: love

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 😉


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.


Flying Solo

I’m veering off the topic of health in this post because my life isn’t all about being sick.  I deal with all the normal stuff that healthy people do and a quick visit to the hairdresser yesterday to have my new wig trimmed made me think about my love life, or lack thereof.

Not to blow my own trumpet but I was really pretty as a youngster.  I started literally fending men off when I was about 11 and, even though I’m rapidly losing my looks now I’m nearly 50, to an extent I’m still doing it.  I’ve spent the past decade doing up my old cottage and I can honestly say that not a single tradesman has entered my home that hasn’t hit on me – young, old, married, single they’ve all tried their luck.  And to be fair I had a bit of fun with an Aussie plumber who had the sexiest accent in the known universe, but other than that I’ve been single for nearly twenty years (I haven’t been celibate for that long, but that’s another story! 😉 ).

It would be an easy thing to assume that my solo status is down to my illness, but it’s not strictly true.  My hairdresser, who is 2 years younger than me, has also been single for twenty years.  She owns her own home, runs a successful business, has 2 lovely grown-up girls (she’s a divorce) but her love life is a wasteland.

We’re both strong, capable, outgoing women.  Like me, Jo is very practical – she made her own solid oak kitchen units from scratch after doing a woodworking course and also makes many of her own clothes.  I’ve renovated my house single-handedly, despite my health, and can spend hours crocheting.  Jo is slim, fit, attractive and trendy and seriously looks 10 years younger than she is.  I’m not bad looking for an old bird, although I no longer have my own hair and have lost a tooth 😉

It’s true we live in a remote, sparsely populated area but Jo travels quite a lot having friends in Edinburgh, Manchester and Spain whom she visits regularly so, unlike me, she has the chance to meet diverse people.  We both have a lot going for us.  So why are we alone?

The truth is neither of us can find a man who can offer us more than he takes.  Women in the last 50 years in particular have evolved in a big way.  We’re financially independent.  We run homes and businesses.  We raise children and care for aging parents.  We have hobbies and passions.  We do volunteer work.  We can cook and do DIY.  Let’s face it, there’s not much we can’t do.  And men just haven’t evolved in the same way.  They still want to marry their Mother.  They still want someone to look after their home, provide them with food and clean clothes, raise their kids, put up with their hobbies and then shag them senseless every night.  I can see what marriage holds for them, I just can’t see what marriage would hold for women like Jo and me (and my 10 other single friends).

Women also tend to keep themselves looking good whatever their age.  Middle aged men, on the other hand, often let themselves go but still think they look like they did in their twenties!  I hardly ever see a man over the age of 35 I’m physically attracted to.  I know you’re all going to now say that relationships aren’t just about physical attraction but they absolutely are.  If they weren’t I’d marry one of my female friends.  You have to have sex with your partner at the end of the day and that’s not easy if you don’t fancy them, trust me I’ve tried it.

I often wonder if the men who hit on me realize that I have been hit on for 40 years.  I have heard the same old pick up lines for decades.  I have met the same man, in different skins, my whole life.  I crave for something different.  I have never once, in 40 years of dating, ever been asked what I need out of a relationship – men assume you want what they want, which isn’t the case.

Of course, my health issues add another dimension.  I haven’t met a man who actively engages in my disabled life.  They all just want me to fit in with their life and constantly push me into doing what they want to do, not what’s best for me.

There’s nothing I would like more than to find a lovely man to share my time with but, even if I were healthy, it’s not easy.  You only have to go on Match.com to see there are a LOT of single women out there looking for Mr Right and not finding him.  Single women are usually accused of being “too picky”.  Bollocks to that.  Men need to step up their game, women don’t need to lower their expectations!

I’m sure many of you have wonderful husbands and partners.  I’m jealous.  I have not found one, despite extensive trying over the years.  I’ve found men I’ve loved as people but weren’t attracted to.  I’ve found men I’m attracted to but don’t like as people.  It’s getting the two together which remains elusive and on the very odd occasion I’ve found them they’re either not interested in me, or live in Abu Dharbi  😉

Not many women are openly honest about why they’re not finding partners.  They feel it makes them sound full of themselves to say that men are all much of a muchness and don’t offer them anything they can’t already get for themselves.  We no longer need someone to provide us with a home or to fiddle with the car engine.  We need emotional intimacy, mental stimulation, wit, tenderness and other ‘girlie’ traits – because, and here’s the shocker, we’re girls!   I don’t need someone to buy me jewellery, I need someone to drive my Dad to his CT scan or to walk Bertie when I feel crap.  We don’t want sex every night because men are shit at it.  That doesn’t make us frigid, it makes us women who have different needs to men.  We like cuddling much more than smelly, sweaty, often unfulfilling rumpy pumpy which doesn’t make us abnormal, it makes us girls.  I wish more people were honest about the fact that, on the whole, men and women’s sexual habits aren’t the same instead of blaming women for not wanting sex more.

100 years ago men and women complimented each other – men went out to work, women looked after the home and kids.  But time has moved on.  Women are now able to say what they want and it’s not what our mothers or grand-mothers wanted.  1 in 5 middle aged women are now childless.  It turns out that, given a choice, many women aren’t that maternal myself included.  So if I don’t need a financial provider and I don’t need a Father for my kids, what do I need from a husband?  I need all the things I can’t give myself: hugs, emotional support, someone to talk things over with, someone to stimulate my mind, someone to make me laugh, someone who cares about my problems, practical help, someone to share my enthusiasm and passion for life with.  And someone who asks me what I want in the bedroom, which has much more to do with a connecting of minds than bodies: “men fall in love with their eyes, women fall in love with their ears”.

I don’t give up hope of finding someone to share my life with, though I’m realistic on my chances of finding Mr Right.  I’ve been in some very unfulfilling relationships over the years and one thing’s for sure……….I’d rather be single than part of an unhappy couple.  I’ve never been as lonely single as I was during my marriage.  Having said all that, if you know any handsome, single, middle aged men who aren’t emotionally frigid, don’t want me to go on skiing holidays, aren’t workaholics but are nevertheless financially secure, want to live in the Lake District and aren’t totally fazed by disability shove ’em in my direction 😉

Love & Loss

When I was 21 my biological dad, brother, aunt, uncle and cousin stopped speaking to me after I asked my step-dad to give me away when I got married.  My step-dad was paying for the wedding and none of my paternal family had been to see me since I was 7 years old and my Mum had moved us to another county, plus they’d never met my fiance, so I feel I made the right choice.  I’ve not seen or heard from any of them since apart from my brother who, 24 years later, decided he’d made a mistake and wanted to make up.  I said no, particularly as I’d written to them when I was told I might die and they wrote back and told me to “pull myself together, there are people in the world worse off than you”.  They thought ME was “all in my head” even though they’d never met anyone with it or seen how desperately ill I was.

When I was 22 one of my closest friends was killed.  She’d been given a bike for her 21st birthday and was hit head on by a car while out riding it.  She was so badly mangled not a single organ could be used for transplant.

When I was 24, my then best friend was diagnosed with a brain tumour while taking her final exams to be a Midwife.  She survived, but was left permanently disabled and blind in one eye.

At around the same time, an old school friend died in his sleep from a brain aneurysm.  He left behind a young wife and a 2 year old daughter.

At 26, another good friend passed from liver disease.

In my late twenties, I nearly died from severe M.E.

In the last 10 years, I’ve lost my one remaining Grandparent, an uncle, 5 aunts and my Mum has lost her 2 best friends – all but one died of cancer.

Two years ago, a wonderful friend of over 30 years died from Colitis, which should never have been allowed to happen and still makes me furious when I think about it.  In the same year, another dear school friend committed suicide after a long battle with depression.

My Mum now has a terminal disease.  She could live another 5 years or she could have a heart attack, or catch a chest infection, and die next month.

I’ve had no option but to deal with the loss of people I care about.

The biggest lesson learned has been to appreciate the people in my life.  I’m British, northern and working class – we don’t do gushy and I tell my step-dad I love him on high days and holidays – but I show him I love him every day.  The first thing I do after I get up each morning is ring him and my Mum just to check they’re OK, even though I’m going to be seeing them 4 hours later.   And when I leave the house, they both wave me off at the window.  Every time.  Even if I’m just going to the shop and will be back an hour later 😉 .

My friends know how much they mean to me.  I have 2 wonderful neighbours, both in their seventies, who are like second parents to me.  Again, not being comfortable with overt displays of affection, I always put “love you both” in their Christmas card, even though I’d never tell them this to their faces 😉 .  They had a car accident a few days ago and the first person they rang when they got home wasn’t their own daughter (who fell out with her Mum last year over something absolutely ridiculous), it was me, and I rushed round to hug them with relief that they were both unhurt.

I never want to be one of those people who loses a loved one and has things they wished they’d said or done.  Life is precarious – my “goodbye” today could be my forever goodbye, tomorrow is never guaranteed.

The realization at a young age that death comes to us all, and not just when we’re old and expecting it, has been a powerful driving force.  Most days, I try to act like I’m not sick.  I try to ignore my symptoms and get on with living.  I often say to myself “if this was your last day on earth what would you do?” and it helps me stop being quite so scared of the future, and to put up with my symptoms and cherish the moment (I’m starting with a migraine, and am seeing dancing coloured spots as I type this and my head is starting to pound, plus I’ve got palpitations and pins and needles because I’ve just eaten breakfast, but I’m ignoring it all and typing anyway).

On the flip side, I think some of my friends would describe me as pretty ruthless.  If someone takes me for granted, is deliberately hurtful, or is just generally difficult to be around I just get rid.  I don’t dwell on it afterwards or feel hurt or upset – they’re not worth my time or energy.  As many of you know, my best friend of over 20 years recently fell out with me and I haven’t missed her for any second of any day.  Honestly.  The fact she could chuck 22 years of friendship away so easily shows she didn’t value me and why would I want a relationship with someone who doesn’t value me?  Life is way too short and precious to waste it on people who aren’t worth the effort.  I don’t know why so many people cling on to relationships which are toxic, unsupportive or just generally crap.  Walking away is so easy (spouses and joint mortgages aside) – say goodbye and jog on, even if they’re family.  Sharing a gene pool means absolutely nothing to me and certainly gives no-one the right to treat me like shit.  My step-dad isn’t biologically related to me but he’s been more of a Dad than my genetically related Father ever has and some of my friends feel more like siblings than any of my three brothers.

Love is many things but most of all it’s a verb – it’s a ‘doing’ word.  Saying “I love you” isn’t enough, you have to show it.  And it may be a cliché, but love doesn’t hurt – it’s supportive, reassuring, kind, compassionate, respectful, companionable and fun.  It’s all pretty simple really and I don’t know why we make relationships so complicated.


More Bits & Bobs

I’ve heard back from Dr Seneviratne and unfortunately my tests can’t be carried out in Manchester, so I’m travelling back down to London for the day next Tuesday to have DAO, methylhistamine, urine and plasma histamine, and a histamine releasing urticaria screen done.  According to Dr S, we don’t have a reliable 24 hour N-methylhistamine urine test here in the UK, nor a PD2 or heparin – all of which are available in the States but for some reason not here.  It sucks.  In typical Sod’s Law fashion I have not a hive in sight, and even my rampant sneezing has calmed itself down this week.  If I knew what caused them I’d provoke a reaction, but I have no idea what sets them off.

I’m not sleeping at the moment and it drives me crazy.  I can’t keep my eyes open past 9pm, no matter how hard I try.  So I doze off and sleep fitfully until 1am.  I’m then awake for a good hour, listening to a talking book on my iPod.  Eventually I manage to nod back off until 4am when…….TADA!……..my brain decides it’s had enough of even pretending it’s trying to sleep.  I then lie listening to my book until 7am which is my usual getting up time.  I’ve had trouble sleeping for the entire 20 years of my illness (though before I got ME I could sleep for England, and did!).  I miss sleeping – if nothing else it gives me a break from feeling ill and being in pain.  I know histamine is heavily involved in the sleep-wake cycle so I’m sure that isn’t helping.  It does get to the stage though where you don’t care what’s causing it – you just want some kip!

Things on the Ehlers-Danlos side seem to be thankfully very quiet at the moment.  My back pain has been relatively good recently, though getting worse again with not getting enough sleep which is really frustrating.  I’m not wearing any braces at the moment, apart from my SI belt which I use every day when walking my dog to help with the stability of my SI joint, and an occasional Oval 8 on the DIP joint of the middle finger of my left hand.  I really do need to order some more insoles for my shoes though, as the ones I currently have are fairly much knackered!  Two pairs cost £30 though, which is a lot of money as I’m so hard up with paying for all my MCAD appointments etc. and thinking of Christmas looming on the horizon.

On the down side I feel sick 24/7 and have done for months – the taste of acid in my mouth doesn’t help one iota either.  Consequently my appetite is virtually zero and I have to keep reminding myself to eat (I’ve lost another 4lbs I didn’t need or want to lose).  I also have continual pain from my stomach to my bottom, much of which feels heavy and crampy like period pain.  I’m sure there’s all sorts going on in my GI tract, and I wouldn’t be at all surprised if I also had either endometriosis or Pelvic Inflammatory Disease to boot.  Due to my drug reactions though I wouldn’t ever contemplate surgery and can’t take hormones or painkillers, so I just put up with it.  My nervous system is also a bit loopy, with the continual pins & needles I have in my feet and hands being quite pronounced, and often spreading to include my entire head and face.  Mornings and evenings are the worst.  When I first wake up my whole body is blissfully calm and relaxed, but within about 10 minutes I can feel my nervous system gearing up for the day, the pins & needles returning and all my muscles tightening.  And in the evening when I’m settling down to sleep I get all sorts of twitching, limb jumping, feeling like the room is moving or I’m falling, and skippy heartbeats while my nervous system turns itself off again.  After 20 years I just wish it would bugger off and leave me in peace.  With the hyperactive nervous system, nausea and insomnia I’m consequently quite tired and not able to do much – no change there then!

I had a huge reaction to my recent blog post on Love & Romance which was quite unexpected.  It shouldn’t have been, as obviously there are many of us who are single and have chronic illnesses or disabilities, but when you’re going through something which isn’t discussed in public you do feel like you’re the only one who feels that way or who is coping with that situation.  I even have healthy friends who could relate, as they have struggled to find ‘The One’ for various reasons and also feel lonely and crave intimacy.  It’s comforting to know I’m not alone but I feel sad for all of us who are unable to share our lives with someone special and just long to be held.


I’ve been wanting to write this post for some time now, but every time I’ve tried it’s been abandoned as I find my contradictory feelings on the subject so hard to put in to words.  I became ill with severe M.E. when I was just 24 years old (I’m now 46).  I’d had boyfriends since I was 13 and, when I became ill, was in a serious relationship with a lovely man four years younger than me who I thought I’d probably marry.  We were both sporty, ambitious and sociable, travelled abroad on holidays and led busy lives.  Then I became bedridden and barely able to speak, think or function.  The relationship lasted a further 18 months before I ended it – he just wanted his healthy girlfriend back and I couldn’t bear to see him unhappy or to rob him of his future.  It wasn’t even a difficult decision to make at the time, as he was absolutely rubbish in the role of Carer, being immature and selfish and totally unprepared and unwilling to change his life in any way to accommodate my new ‘normal’.  That was the last relationship I had so I’ve now been single for nearly 20 years.

The first 6 years I was so incredibly ill I wasn’t capable of being in a relationship, but that didn’t stop me wanting one.  I lay in bed alone 23 hours out of every 24 (I had my own home and just saw my Mum for an hour each day as she worked full time) and have never felt such loneliness.  Prisoners are kept in solitary confinement as a form of punishment and I can see why.  The desire for companionship, affection and intimacy was like a physical ache which gnawed away at my insides until I felt like I’d go mad.

As I started to recover somewhat from severe ME I was able to start to go out socially now and again for a few hours, mainly during the day as, even now, I’m exhausted and ill by evening.  I was in my mid-thirties by this time and the desire to share my life with another person was, at times, absolutely overwhelming.  I ached to just have someone to simply chat and cuddle and laugh with in the intimate way that couples do.  To have someone who thought I was fabulous and funny and amazing.  My sex drive was HUGE (probably my body’s way of telling me to hurry up and procreate as time was ticking by 😉 ) but I had absolutely no outlet for it.  I did meet a few men I was attracted to, but they were healthy and I was not and it was never going to work: they wanted to go away for weekends, stay up chatting into the night, they wanted to take me out and introduce me to their friends, they were full of energy and had hobbies like mountain biking or kayaking which they wanted to share with me.  Gentle 10 minute strolls and being in bed by 9pm to actually sleep rather than fool around is the domain of the elderly, not fit men in the prime of their life.

Me pre-illness, modelling wedding dresses

Me pre-illness, modelling wedding dresses

By the time I hit 40 I’d tried all the usual ways of finding a partner.  Match.com and I were intimately acquainted and my soul-destroying experiences with liars, cheaters, the socially inept and the downright weird could fill a whole other blog!  It doesn’t help that I live in a very remote rural area where sheep outnumber men 10:1 and are, on the whole, better looking and more intelligent than their male human counterparts 😉  I did get hit on fairly frequently (I used to be a model, and the one good thing about having Ehlers-Danlos is that I have lovely skin and look 10 years younger than I actually am, yayy!) but by people I wasn’t attracted to and had absolutely nothing in common with.  I do find that when you’re ill men think you’ll be desperate and will want to shag anything that moves, including them.  And yes I am ill and I am desperate, but not blind, or sad enough to have sex with someone who can’t even string a sentence together.  As sick as I am I’m just like everyone else, and want to find true love with a soul mate –  someone I adore who adores me back.

I’m now in my mid forties and am resigned to being alone for the rest of my life.  The yearning, screaming sadness I feel over this has diminished now and a sense of resignation and sometimes even relief has taken its place.  Realistically I’m not well enough to be in the kind of romantic relationship I want, and I think if one came along and I couldn’t take part in it fully I’d feel sad rather than happy.  In truth I need a Carer, not a Husband.  I don’t have the emotional energy to take the problems and life challenges of another person on board, and don’t have the physical energy to give the care and attention to a partner that they deserve and which would make their life richer.  Sex for me would be painful and exhausting and I’d worry constantly that it wasn’t happening frequently enough and that they’d get fed up and find someone else.  Someone healthy who could give them all the things I can’t.  When you become sick it’s hard enough to keep a relationship going when you’re already married, share a history, and have a pre-existing and solid foundation.   Trying to build these things in the state I’m in is almost impossible.

My sex drive is thankfully diminishing as I age, but I now haven’t been held by another person for 18 years and it’s that more than anything which I crave.  To have someone stroke my skin or my hair would be nothing short of nirvana.  I’m grateful not to have the pressure of cooking for another person, but do miss asking someone else to “stick the kettle on” or having someone else offer to cook for me.  It’s liberating to not have to worry about my appearance, but I miss someone telling me I look pretty or that they love the dress I’m wearing.  I haven’t had an argument for 18 years, but I haven’t had someone hold me when I cry either and tell me it’s all going to be OK.

This post isn’t meant to illicit sympathy (god forbid) and if you tell me not to give up hope that Mr Right will appear I might just try and shoot you dead.  What it does aim to do is be realistic about living with severe and chronic illness and the effect this has on love and romance.  The long-term sick aren’t often honest about this area of their life, afraid they’ll be pitied or given patronizing platitudes (trust me when I say over the last 20 years I’ve heard them all).

In effect, I became elderly when I was just 24.  I live a life shared by many pensioners with ailing health, whose partners have died and whose friends are few.  The big difference being they’ve had a whole life before they reached old age, whereas I had 6 brief adult years which is no time at all to live.  If this post sounds sad it’s because I am sad – who wouldn’t be.  But it is what it is and, just like my health, I have to be accepting of my fate and enjoy the things in my life which are good.  I do count my blessings every day, and try not to mourn my losses – it’s a balance I find easier as I mature though one which, if I could change, I would.