Tag Archives: friends

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.


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.



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.

All by myself

I always hesitate about writing really personal posts online.  It’s difficult to admit your weaknesses and vulnerabilities and I don’t want to be seen as whining or depressed because I’m neither.  However, I always wanted this blog to be an honest account of my life and unless someone speaks about personal issues we’re all going to go through life thinking we’re the only ones to think and feel the way we do.

My life is extremely isolated.  Neither my close, nor my extended family, have had much to do with me my whole life (none of my 3 brothers lived with us while growing up so I always felt like an only child), and this got even worse when I became sick.  My Mum has been my best friend my whole life and there is very little I couldn’t discuss with her.  Even at the age of 46 I speak to her every morning, visit her 5 times a week, and sometimes ring her in between.  If I’m watching something good on the TV I ring and discuss it with her.  If I buy something nice she’s the first person I tell.  If something bad happens, she’s the person I discuss it with.  She is, and always has been, my rock.  And I’m very conscious of the fact that in the next couple of years, possibly sooner, she will no longer be here.  The thought gives me an actual panic attack and I worry for my mental and emotional health when she’s no longer around and I am absolutely alone.

I only have two close friends.  I rarely get to see my best friend as she lives hundreds of miles away so we speak on the phone for about 1 hour a week  (although I haven’t currently spoken to her for nearly 3 weeks as she’s so busy).  And whilst I’m eternally grateful she stood by me for all the years I was bedridden (she was the only one that did) I’m not sure I can feel grateful for the rest of my life.  In fact I feel resentful that she can’t even manage an hour a week for me.  Not that I’d ever say anything.  When you love and care about someone you actively want to spend time with them.  You want to share in each others lives.  You don’t have to be reminded to ring them, or to slot them in to your busy schedule.  You can’t force people to want to speak to you and I’m not about to try.  Oprah and Gail speak every single morning, and every single evening before bed.  Oprah is married and is one of the busiest women on the planet, yet Gail is just an integral part of her life and to not speak to her every day would be unthinkable.  I don’t buy the “I’m busy” excuse for even a fraction of a second.

I see my other friend about once a month and might get the odd email in between meetings, and while I really do love spending time with my friend the level of contact is never going to be enough to fill the gap which is going to be left by my Mum.  Got to be honest, I’ve had times where I’ve felt hurt that my friends don’t care just a teensy bit more about what’s going on in my life but then they’re both married and if you’ve never lived alone you can’t possibly have any concept of what it’s like to be this isolated.  Plus I appreciate I am not their responsibility and they both have enough on their plates than to worry about me.

I’ve been virtually housebound for 20 years.  Not only that, I live in a very rural area which is sparsely populated.  I don’t go anywhere to meet new people or make new friends.  And even if I did, it’s incredibly hard to meet people you really click with and who share your interests, values and sense of humour.  No-one can ever replace my Mum, but I wish I knew how to cultivate a close friendship that will at least partially fill the gap when Mum is no longer here.  I have no clue how to go about it, which sounds sad and desperate even to me!  Healthy people often don’t understand that I can’t do things or go places with them, which sometimes comes across as me being stand-offish as I decline every invitation which is made to me.  I think they also worry that, because I’m ill and single, I’ll be clingy and needy.  Sick people tend to often just want an email friendship which they can pick up or put down when they’re not well, which I totally understand but then the friendship becomes about them and their needs all the time and not about me and my needs.  And to be honest I’m fed up to the back teeth of fitting around everyone else’s schedules and catering to everyone else’s needs, while mine are endlessly ignored.

I don’t even begin to have an answer to my situation.  Good friendships take years to build, and as my time with my Mum is limited I know it’s an urgent problem which needs to be addressed.  If only I knew how.


Following on from a previous post about Romantic relationships, I thought I’d share my journey of making and keeping friends while dealing with severe and chronic illness.  I’m going to start out by saying that I’ve always been a bit of a loner.  Not by choice necessarily, but just by the fact that as a kid I was wise beyond my years due to a difficult childhood and never felt I had much in common with other kids emotionally, and as an adult I’ve had some crappy experiences with ‘friends’ which has at times made me wary of the human race in general.  My trust in people is therefore not that high, and I have to know someone a lonnnngg time before I call them friend.  I’m also a person who doesn’t do well in large groups – I’m much happier just having one or two close friends than dozens of acquaintances.  Bearing all that in mind I think my lack of friends during my illness hasn’t impacted me as negatively as it does other people, who are used to being constantly surrounded and defined by their mates.

When I became ill at 24 my closest friend was a girl who we will call L.  We’d known each other since secondary school and became ‘best’ friends when we were about 19.  She was ambitious, married into money, wore designer clothes and had to be seen in all the right places.  When I was first sick and stuck in bed she did come to visit – not armed with much needed food, or offers of help to wash my hair or change the bed sheets, but dolled up to the nines and asking if I was coming out to lunch.  If I wasn’t, she just said “oh well, maybe next week” and bogged off.  After I’d been ill for about 12 months, L and her husband asked myself and my boyfriend to go away with them for the weekend to stay in a rented cottage. I really wasn’t well enough, but my boyfriend was sick to death of having no social life due my illness, so I agreed for his sake.  I felt incredibly ill the whole time but tried really hard to put a brave face on it.  Nevertheless he got angry with me for not being able to join in, and for not being as vivacious and bubbly as he wanted me to be, and simply stopped speaking to me.  Instead of L being on my side, however, she sided with him.  She’d always fancied him, and this was her chance to be a shoulder to cry on (her marriage unsurprisingly didn’t last – she eventually ran off with her personal trainer).  I went to bed on the Saturday night and left the 3 of them down in the lounge.  What they didn’t realise is that I didn’t go to bed, but sat on the stairs listening to them talking about me, and saying how awful it all was for my boyfriend – there was not an ounce of empathy for my situation or the fact I was sick. And  I remember lying on the floor on the Sunday morning, feeling like death, and watching as L lay draped over my boyfriend’s legs on the couch while he massaged her feet.  Really.  Needless to say I dumped her as my ‘friend’ the second we got home.  It took me another 18 months to dump my boyfriend, but I got there in the end!

My 2nd closest friend at this time was a girl called N.  I first got the virus which led to my ME when I worked aboard a luxury cruise liner.  N worked on the same ship and we briefly shared a cabin.  That was in 1993 and she has been my best mate now for over 20 years.  She lives hundreds of miles from me, and I think that’s why our friendship hasn’t been killed by my illness.  As we live so far apart we’ve never “done stuff” together – our relationship has been based on talking on the phone once a week and giving each other emotional support.  She is my branch of the Samaritans!  There have been times in my illness where I could barely speak, or could only chat for 10 minutes, but N has never put me under pressure to do more and always made me feel like my friendship is valuable to her.  That I am valuable to her.  We are polar opposites as people: she is married for 20 years, I am single for 20 years.  She has 3 kids, I have never wanted kids.  She is a city chick, I am a country girl.  She is girlie, I am tomboy.  She is healthy, I am sick.  All I know is that I always feel better when we’ve spoken, and when anything happens in my life she is the 2nd person I tell (my parents being the first).  I trust her so much she is even executor of my will.  My self esteem being what it is I do still question why she’s my friend, but trust that she must get something out of it or she wouldn’t bother.  Whatever her reasons for being my friend, I am thankful.

My other close friend is K.  We met about 12 years ago at a local ME Conference, as K also has ME.  We’re quite similar as people, swear a bit too much and share a sarcastic sense of humour, if not hobbies (she’s into motocross and mining and knows more than a girl should about rocks – get a life woman! 😉 ).   It’s brilliant to have a friend who lives locally, as we meet regularly for lunch as well as trips to garden centres, galleries, country fares and the theatre when we’re both well enough.  Without K my actual real-life social life would be a big fat zero.  She’s clever, and funny, and creative, and practical, and resourceful and interesting and immensely knowledgeable ……… although I’d never tell her any this because I’d never hear the end of it 😉 .  Seriously K if you’re reading (which you won’t be as you think all this blogging stuff is a pile of crap) thank you for being my friend!  And I still think you should get a dog :-p .

I’ve been very active over the years on online ME forums, and now through my blogs.  I’ve met some fabulous people online that I now call friends, many of whom I don’t even have photos of.  When push comes to shove the only people who really know what you’re going through are other people with the same illnesses at the same severity that you have.  I also like online friendships in that they’re mostly via email, so I can reply when I feel up to it and they understand that I might not write for weeks (or even months) if I’m having a bad patch.  This type of support is invaluable and I seriously would have gone nuts without the internet and my online friends.  There is a downside though of putting yourself ‘out there’, in that lots of people may want to be your friend.  And while that’s lovely, I simply am too sick and exhausted to write to dozens of people every day, or to belong to every ME/POTS/EDS/MCAD/dog/photography/crafting group in the known universe.  I’ve also ‘met’ people online who think I’m a doctor and ask me never ending medical questions.  Or who are angry about their situation and want to vent at me….for pages and pages and pages.  Or who are miserable and want to constantly off-load onto me, when to be honest I’m depressed enough myself.  It’s a fine line and when you’re faced with a potential 80 billion people you have to be very choosy who you give your time and energy to.

So I have lost friends, kept friends, and gained new friends throughout my years of illness, and there are people I’ve met (both online and in real life) recently who may become good friends in the future, for which I am thankful.  And yet I still feel alone.  I don’t have any healthy friends nearby to help in a practical way, which is something I feel I’ve missed out on.  There are times when I’ve needed to go to a funeral or a hospital appointment but been too ill to drive, and I’ve had no-one healthy to call on for help (I’ll cover the subject of Family in a future blog post!).  This, of course, is where a healthy husband or partner would have come in, but sadly that hasn’t been on the cards for me.  I am still incredibly isolated, and am wary of imposing myself on neighbours (some of whom are lovely) as they are all healthy and busy and I don’t want them thinking they have to constantly put up with the sad, sick cow from next door out of pity.  At least I have my Bertie for company, though in typical man fashion he does bugger all round the house and his conversation isn’t up to much – unless you speak Schnauzer 😉 .

Photo of me & Bert