CFCs and dating

Hii Brian.  Thanks for your thoughtful and very interesting post. You make a lot of sense with what you say. I can see pitfalls with the idea of two sick people getting together and I have thought of difficulties that would occur if neither had the energy to do anything on a particular day when both were feeling rough. But I guess I'm in a place at the moment where I feel it's worth a shot because I'm just so fed up with being alone all the time. When I do have the energy to go out, it's on my own (boring!) and then I come home, shut the door and only have my three cats to talk to and as much as I love them, I need some human company! Plus they can't give me a foot massage! ☺️Your idea of ME/CFS people getting together with people with other health conditions is an interesting one too. Did you watch the Undateables programmes? There were couples that did just that. A lovely guy with Tourette's married a girl who actually had no health issues at all, and there were a few like that. So maybe this proposed dating site might even appeal to people with no health problems who wouldn't mind meeting someone with ME/CFS, it's a thought. Many people with these and other illnesses are looking for love, fun and companionship and their conditions may stop them from going out and socialising in the normal way, but judging from the lovely folk who write on this Forum they all have brilliant personalities and great sense of humours. and would make great friends/wives/husbands/companions. This illness robs us of our health and for many the inability to work but the worst thing for me has been the isolation it has caused, and I don't want it to continue so I have to try and change things. It's a very daunting venture to embark on but I honestly think it's worth a try because it's even more daunting remaining alone for the rest of my life! I may be limited physically but there's still life and a spark in me and I hope I can find a soul mate who may be in the same or a similar boat, or maybe even someone who won't mind my limitations but will love me for who I am. Your post has given me an idea of somehow inviting folk with no health issues to make contact with the site for a possible date. Many people are seeking love and companionship and not all want to live a wild life of mountain climbing or jumping out of aeroplanes as so many peoples' profiles on other dating sites seem to indicate! So a gentle but no less special relationship with a person with ME/CFS might be all they need. Thanks Brian, you've given me much food for thought! 😀

 

That's so enlightening Brian. Much food for thought there! Thank for sharing with us.

So awful about the nurse and army officer, how utterly unjust the benefit system is. And being penaslied for living in one home rather than two is ludicrous because with the massively growing population and homelessness you think they'd encourage it if they had any sense!  Grrrrrrrrr And thinking two can live as cheaply as one is a fallqacy in my opionion.

Would it be a way around a couple moving in together and not losing benefits if they used the spare room and said they're the lodger? Wouldn't be a lie if people have just met and are getting to know each other before any long term commitment.

Some very interesting things there Brian. The only problem I see with the idea of getting together with people with other disabilities than ME/CFS, it that we are then right back to square one..

Many disabled people have plenty of energy. I've met other ex-servicemen with legs missing, arms missing, who still do Marathons and other sports and who tend to look at me exactly the same way that the rest of the able population does, as if to say "Not much wrong with you then" .

Very few other diabilities, and therefore sufferers, have the same total exhaustion and 'malaise' that we are prone to, so any potential relationship might well come up against the same old hurdle of a complete lack of understanding, which at least we wouldn't get from a fellow sufferer.

It's not an easy situation though I agree, especially when the benefits situation raises it's ugly head too... 

But hey, if ME/CFS was easy, everyone would want it ! ...

Lol Mike, I wouldn't mind giving mine away if someone wants it!

I agree about the type of disability because I'd rather be with someone who has ME for the utter understanding. If both are too ill at the same time to do anything then what needs doing can just wait.

Imagine having lovely long sleeps, rests and cuddles with someone in the same boat and waking up not alone!

Exactly how I see it Georgia, I don't want to wake up to find my partner is out doing a half marathon in her wheelchair followed by a sponsored parachute jump, while I'm having trouble getting both eyelids open at once...

Hear hear Georgia 😀 

Heheheh oh you've set me off now!

I have a sort of boyfriend, in that he visits and we talk on the phone a lot. We tried the relationship thing but it wasn't right for me, he's fit and healthy and one of the most energetic people I've ever met! Rides a Kawasaki 1000 which says a lot about his personality.

Even his talking somtimes sends me into the verges of a coma!

 

Hi all;  have been reading/keeping up with the conversations....and with much laughter/giggles....was sooo pleased with the "uplifting thoughts/titbits". However, am sorry to hear that we've hit a snag....please don't give up on the idea/s re the coffee outings, as it is what we all need...just an hour out of our normal dull days.  I can see re the pitfalls of the pension situation....but do we all feel that by having some light coffee dates (or other get togethers) really have to be considered as "long-term" to start with?  Even if love/real affection does develope, perhaps that bridge should be crossed when it arises.....(me, I would do what a lot of  others seem to do in this world, today....think of keeping our own abodes, to start, and co-habitate on the days/nights that suit each couple".....I was not brought up to abuse the government/welfare systems, but when we see soooo many being born into "the system", and don't ever want to get out of it, I am really feeling for those who really do need it (those of whom who paid their taxes), it should be equal for ALL.....don't let your conscience get in the way of some happiness...you deserve it like all "healthy" people, with some/most of them never having done a day's work in their lives....keep going with your fun/dates, please......and let's get back to organizing those special days.....Bron

What gets me Bronwyn is people who cheat the benefit system, pretending to be ill; they're ruining it for us all! The forms are so difficult to fill in and we're all under suspician when we claim that we're debilitated!

Some people have lots of babies to get more benefits and that is just selfish and sick in this overpopulated world. And people who work on the side and claim benefits make me seeth. And boy can I seeth!

Don't get me started on ridiculously rich politicians and bankers cheating the tax system!

Speakers Corner, here  you come Georgia! Totally agree with you though! 

You're right Bronwyn; it doesn't have to be marriage right from the start! What people seem to want is companionship/friendship first and foremost, someone to share their lives even if only a couple of times a week for chat/coffee etc, and help them feel human and alive again. What develops as a result will be a bonus! And who knows how many long term friendships may be formed! 

Ha ha ha Mary, don't tempt me!

Hi Mike, you are SO right, if people can't visibly see an illness, they just think you're okay and there's nothing wrong with you - on buses etc, people don't care if you have to stand, whereas someone with a visible disability is offered a seat immediately.  My younger sister went through breast cnacer the last 3 years, and she found the same as me, that because you look alright, you must BE alright.  I am so glad that my sister has survived and she is fitter than me now.  She has never been as exhausted etc as me, which I am so glad about because lord knows, she's been through enough.  But whilst she sort of understands my illness, she doesn't fully.  None of my family understand me, which I think is the hardest thing for me.  Like you say, men who have lost limbs go on to be able to run marathons and all manner of things (thankfully for them of course), but ours is invisible isn't it.

Hi,Val,  Glad the idea and response is going well Mary, a huge thread now, takes an age to get to latest if computer doesnt do it auto. Very true Val, in that what people cant see in health probs they barely acknowledge, same for benafits system, even their docs..  l had severe symptoms of intersticial cystitus for many years, causing frequent severe  pain, fatigue, nausea, often debilitated, but generally looked okish, So couldnt get gps,dss or even many of family to believe how bad it was, my husband and even young sons did, living with you its more obvious. Finally diagnoses and treatment for symptoms, amitrip, cimetidine, supplaments, help a bit, but  no cure, as with most inflammatory conditions, of immune type, but even with diagnoses little support, rejected for ib, scepticism from people generally, at times mockery from cynics. Now If people see a bit of inflammation-bleeding  on your  skin there,s sympathy, if its inside your body and unseen, its not real to them. Same with acute illness, its bad, but rushed to a and e, mass testing, quick diagnoses, treatment surgery, recovery, l had same with gall bladder, a few month intense bouts of pain, quick diagnoses, quick op, quick recovery. Years later got cancer diagnosis, not wishing it on anyone, but it opened the doors for all specialists, people visiting me to advice on top benafits, sympathy from everyone. l had 6months chemo, and radiotherapy, you do get side effects and its tiring, and maybe others affected worse than l was, l can only say for me it was copeable with and improvement started within months, back to normalish, glad your sis is doing well, l,d like a sister.  Whereas these chronic inflammatory immune type health problems go on, and on, years go by, and l personally have suffered far more with the chronic health fatigue than l did with cancer and major ops.  But now its back to, carry on,  get on with it, and despite diagnoses still an elament of its phycalogical, they think you dont need help with household jobs, gardening, shopping,walking,  thank goodness for A... delivering food, and you can supposedly manage on minimul benafits, re can l afford a taxi, or stay in all the time. . Also thankful for pets, garden, and knowing others simular, the cherry on the cake would be spending time with a partner for mutual support, a laugh and bit of fun, serious debate chats, plans, a walk in countryside on good days,  and agree with the foot massage, any massage, bliss, cant train dogs to do that either.  Yesterday good day in did a bit of gardening, loved it, today so nauseous and sleepy.  But its good to know others have simular probs, and thanks to Mary we can share, good, bad, and a bit of naughty humour, l read the where there,s a willy there,s a way, lol,

good on yer Maryx 

Damn it I knew I should have patented 'where there's a willy there's a way!'

oops  wrong author, fatigue fog day for me, but if its origonal def worth a patent. 

That's ok Lynne, I'll probably get over the crushing blow of not being recognised in time.

haha, l know the feeling, l,m instantly rememberable-not, weve all our cross,s to bare,  wonder if l,m too old for purple hair, or maybe when l meet mr someone on Mary,s support and dating site, or `where there,s a willy there,s a way` site. royalties.

I know I'm alive when people make me laugh! Perhaps we should start a site called ME laughing therapy?

You have excellent reading between the lines skills.

Jo Brand dyes her hair, and I still dress like I always have, hippy biker. I've never been socially accpeptable so why should I change it now.

Bit of the old hippy style in me, showing my age now, buying at  at charity shops helps, but its the style l like, But think l,ll stick with my green hair, well full of garden foliage at least, on top of the other  colour,s, more a worzel gummidge type, and not exactly the doted on cheer leader type myself, bit eccentric more than anything and couldnt change if l wanted to,  guess we are what we are. Saw your biker pic, cool, glad you said `hippy biker`, and not the much over used ` rock chic` lve been on bikes, exciting,  had a go riding solo once, interesting, came off it of course, luckily in a field.  So thats two of us, if not more here who are not good at p r,  But think the `where .............    .............` wont keep repeating it, would be a good pr dating site name, l,ll get over it soon

Think lve got the right post on this one, read your dad was a liverpudlian, so were you a big Beatles fan,  l totally loved the Beatles, George Harrison in particular, still have the old lps, but sadly never got to see them live. regret.  Nearest was going to Beatles museum at liverpool docks, met a few scousers, always cheeky and funny, guess its compulsory in Liverpool.  Bet your dad had an interesting upbringing in liverpool,  

Hi Lynne, thank you for your reply.  Gosh you've been through the wars haven't you - it could be all of that, that's caused M.E??? My sister was told that if she didn't pace herself, she could end up with M.E after her cancer/chemo etc.  Thank goodness, she goes to the gym every day and her and her boyfriend have a relaxing sauna afterwards, and are out every weekends to parties and watching live bands etc.  They've asked me to go with them, but i can't go out in the evenings, I'm way too knackered!!  Plus i can't afford the annual or monthly fee for a gym - plus I don't have the energy.  I've had a few operations over the years too (I have scars from head to toe, and always think of the movied 'Jaws' where the men were bragging and showing off their scars on the boat, and seeing who had the biggest scars!!!  Luckily, mine are all small.  I had my Gall Bladder removed too in 2006 - I had vomiting attacks for 7 years before they realised it was my Gall Bladder - and when they removed it, there were stones too, and it had gone gangrene.  They said i was lucky they caught it in time.

The reason I mention that is, because like you say, people help you and care about you when you've had ops etc, but not when the pain isn't visible.  I hope that you've fully recovered now from your cancer? I truly hope that you find someone soon - it's so nice to have someone to share things with, isn't it.  I agree that laughing is the best tonic, and mary's idea has got us all laughing and joking hasn't it.  Good on ya Mary.

I tend to watch mainly comedies on TV, and am about to watch my favourite - M*A*S*H on True Entertainment channel.  Last night, I was crying with laughter at my other favourite - "Episodes" starring Matt Le Blanc.  It's very adult and extremely funny - I don't know anyone else who watches it, do you?

Yes it is lovely having a sister.  I actually have 2 younger sisters and an older brother!!  He rarely sees any of us, and our youngest lives with our mum.  It's Sharon to whom I'm the closest.  She was born a day before my 5th birthday!!  So right from the start, we were incredibly close.  We've shared so much together over the years.

She's off to Italy tomorrow, so I'll miss her for a week as she phones me every day.

Yes that was hilarious - 'where there's a willy there's a way'!!!  I still keep laughing about it, it's my kind of humour - warped!!!!  LOL!!!

I really love this site as everyone is really lovely.  I'm glad that I 'stumbled' across it.  Not sure about the dating thing though, although i am all for promoting it and helping it if and when I can.  Part of me is scared of dating again, I know it's daft, but I don't have the energy for it really, or even the energy to do the dating stuff from scratch!!  Maybe it's the '7 year itch'!!  The last time I was dating was with my ex, from 2009 to 2010.  We still keep in contact - he also has M.E.

It's just nice to be 'chatting' to people who understand each other on this site, isn't it.

Must go as 'Hawkeye' is calling me!!!  xx

Hi Mary. Please don't think I want to pour cold water on your idea. Being an ex engineer, I just like, at the start of a project, to look at its aims, feasibility and possible problems. Think of all the people who open small shops or cafes, and too few people come in. I just think that the big problem here is numbers and distance. Online companionship is relatively easy, online cuddles less so. If you did start such a site, I'd want to join, but I'd have doubts about the numbers.

It only take two to tango....

It's so heartwarming reading how up for this dating site everyone is! I agree with you Lynne that it's so good to share with others knowing they understand. You have really been through the mill haven't you! I did loads in my garden last week too and really wiped myself out! Did you hear that the dog on BGT had a double for the tightrope act. Bit misleading! I really must get this site up and running as it just might take off! 

I want to know how the cheats fill in the benefit forms so easily, I had to get help with mine.  34 years working, never unemployed and I had to jump through hoops and be questioned like I was a criminal makes me seeth too.

Garden foilage Worzel Gomage!!! I had to concentrate really hard to type that because I was laughing so much. I want you to be the prime minister!

Ooohhh ladies we're in for a treat, Mike and Brian are going to tango.

Hi Georgia. No, the lodger idea wouldn't work in that simple form. The DWP would simply assume that they were a cohabiting couple, and dock their benefits, while scrutinising their private lives for signs of fraud. This would put them under great added stress. They might even stop paying altogether while they scrutinised the claim.

Also, if one partner owned the dwelling, if they eventually split up, he would be at risk of being forced to give the other partner a share of its value, which could leave them both without enough money to buy a dwelling, so both would have to rent, paying the rent out of their capital. Because that capital would make them ineligible for HB - or, soon, for Universal Credit!

Is it possible that you're a pessimist and think too much Brian? I understand why, it's good to plan, but I just think you should tango with Mike?

That's ok Brian. You have some valid points. There will be no doubt be obstacles but nothing in life is easy is it! I'm an optimist by nature, otherwise I would have given up a long time ago! At least I can say I gave it a go even if it doesn't work out! 

Hi Val. Gosh you have been through a rough time haven't you! And your sister too. Sounds like she has come through it ok though, which is brilliant! Thanks for your encouragement re the proposed dating site. Because of all the positive responses I feel we have to give it a go. It's a big project but if it's meant to be, it will happen! I understand your worry about dating after so long. It's been a while for me too but the alternative life of remaining alone is what is driving me to do this! 

Dad used to drink in the same pub as Paul but I don't think he ever met the others.

George is my ultimate hero! I used to have every album of his and I try to live by his lyrics. I've told my son that for my funeral I want the family to go out on a boat with my ashes, play 'Here Comes the Sun' and 'My Sweet Lord' and celebrate my life. They should have fun; not be sad, I won't have ended, I'll just begin.

My pop claim to fame is that I used to go trout fishing with Roger Daltry.... does that count?  .....

Your dad use to drink in the same pub as Paul McCartney.  I too am a real fan, John Lennon was my hero.  I cried for a week when he was shot.  Tx

 

Hi Mary, yes that's a very good reason for wanting to persevere with it.  It does sound like a brilliant idea and I am sure it would work.  Everyone seems very positive about it, which is the main thing eh.

I would join - out of curiosity in a way!!!  Anything positive is worth trying isn't it.  It looks like there'd be more women than men, but who knows eventually eh?  I really want to see this tango with Mike and Brian - sounds like a scream!!!

I think that ALL of us have been through the mill haven't we - which is probably why we've got M.E.?

Most men seem to have contracted M.E via Glandular fever?  That's how my ex got it.  I've had GF 5 times in my life since I was 10, but I don't think that was the cause of my M.E?  Who knows eh!!

I wonder if maybe coach trips could be set up for all of us - then if we met someone we liked on the trips, all well and good??????

I still think that your idea of contacting "This Morning" is a superb idea.

Thank you Mary for getting us all chatting and laughing, and something hopeful to hold on to.  I'm an optimist, like you. xx

Hi Georgia, that is so lovely, what a great way to think of life and eventual death.  I've always said that I'd like to be pushed out to sea (I live near Southsea in Portsmouth) on a raft, have someone fire an arrow in flames to set me and the raft alight (when I'm dead of course - before wouldn't be a great idea!!!), then for everyone to party on the beach.

I have been a lifelong James Dean fan and have even thought of buying a coffin now and decorating it with a collage of my hero!!!  But I'm not far off 6ft and 'plumpish' now, so I don't know if by the time I 'pop my clogs', I'd have (hopefully) lost weight - and probably even height by then? So i don't know what size coffin to get?  Plus I've no-where to store it - though I guess I could use it as a cupboard for now? Ha ha, good job we can laugh eh!!! x

hope no one offended me skipping in on bits of conversation here.  But if we are going down the pop claim to fame.  When I was much younger I worked in a Carvery, bar work.  Well one night I was serving behind the bar and a gentleman came in with a couple of other guys, and he had a tall very slender blonde on his arm.  I served them with drinks, and I noticed the other bar staff nudging eachother.  Then the kitchen staff came out and peeped from around the corner.  One of them whispered me to come over and told me that the man I had just served was Bill Wyman  Rolling Stones.  Some staff were unsure and I was asked to ask him if this was the case.  So I asked him if he was Billy Wyman and he stood there and smiled and said  "yes, would you like my autograph? to which my response was "no thanks, they just wanted to know".  He downed his drink and left.  My colleagues were in disbelief that I had somewhat insulted him (not intentionally I may add), my knowledge of the Rolling Stones at that age was very limited I am afraid.

Hi Tina, that's hilarious.  Sometimes you have to bring these stars down a peg or 2 don't you - just to keep them on their toes!!!!  hee, hee, I love that story.  I've jsut hopped in too, and realised that everyone is telling their famous people meetings etc.

I don't know if I should really share this as i am definitely NOT proud of it, but my gran used to push Gary Glitter out in his pushchair - she was born in Banbury.  Thank goodness, that was long before any of his horrible stuff.  Also, back in the 1980's, my brother used to organise the Xmas parties at a local nightclub, and usually, Gary Glitter used to do shows at the Portsmouth Guildhall.  My sister and I saw the Glitter show, then walked on up the road to the nightclub.  The Glitter band were there.  My sister and I walked past them and asked them to dance with us.  I'm glad to say that gary wasn't with them!!!  We danced the night away with the band.

How about funny things that have happened to people?

Again, back in the 80's, my sister and I went to see David Essex on stage in London, in "The Bounty".  We got to the theatre a bit late and were soaked to the skin as it was pouring with rain all day.  There was steam rising from us as we walked, bedraggled through the theatre to go to our seats, dripping coats and brollies in our hands.  We turned left to go through the door to the auditorium, and a man screamed, "NO".  He came running up to us and told us that we'd have ended up on the stage!!!  When we eventually found our seats (which were near the front of the stage), the stage was full of mist/fog as the musical started.  Then when the smoke cleared, we could see the stage, with the 'ship' on there and all the cast.  I looked at my sister and I had to nip outside for a moment as I couldn't stop laughing - we realised that if we'd gone through that door, when the smoke went away - everyone would have seen us tow, 'drowned rats', with our macs on and dripping umberella's!!!!  We still like to tell people that story to this day, and it always makes us laugh!!!

I bet everyone has some funny stories to tell!!

WOW! That's fantastic.  Did he ever sing?  He had such a fantastic voice . 

hi, yes l was lucky in responding well to cancer treatment, and classed as cured, and yes my bods a bit of a patchwork quilt, luckily my gall bladder was very easy op by keyhole, out and about 2 days after it, but my husband was like you and really ill with sceptaceamia and needing big cut. My own theory is some of us dont have great immune systems, as most with one immune prob have others along with allergies also. Yes its good to be able to laugh, as opposed to crying, try to keep the latter to a minimum, odd bad days aside. l love comedy films as so few one, seems more, men mainly, get off on horror films, blood and guts. l like all types of humour smooth to slapstick, manhattan murder mystery with diane keaton, my father the hero gerard d......, barefoot in th park, but havent seen the joey ones, but do watch true entertainment, l even watch Waltons at times, right through to the very naughty billy conelly, lve gone longer than you without being in a relationship, so would be even more in the dark, its more about having a male friend for company, who,d have to accept you on bad days also. My energy is very low at times, shocks me how much l can sleep. Last trip away was 3yr ago, short hop to belfast for family cousins meet up, early flight from local airport, half hour flight, been there 2hrs all chatting, had to exscuse myself, felt sick with fatigue, had to go sleep 2hrs, not enough, went to a show in evening, another cousin in show, dreamboats, upbeat, rock and roll and  l fell asleep sat upright in seat, woke looked around hoping, but l,d been seen, it was `have you had a wee sleep lynne`lol, who,s got my energy. so yeh its more about company to just share with. l had one brother, and they like sons often dont stay as close as sisters and daughters, so its lovely for you having two sisters, oh how l envy your sister off to italy, My sons been to florida, egypt, venice, etc, envious, but we live in hope to improve enough, at least its forecast to warm up tomorrow, about time, thought l was never going to get the cardi off this year.  Alan Alda was in manhattan, also four seasons, very funny, take carex

Yes The Who did some great stuff... actually they borrowed the somewhat flash motobike that I had in those days, as a youngster, for some shots for their film Quadrophenia......

He always was one very clever chap and had a lovely place in Sussex in those days, with some beautiful lakes filled with trout, it  was absolute bliss of an early morning casting a fly there ... Those were the days..

It's absolutely essential for this project to look at possible pitfalls Brian! So we can find solutions to the problems. Keep em coming.

Motorbike Mike? Or moped? Real hair or a wig? Mod or rocker, which were you?

l,m not jhoking about worzel, its not been unknown for me to come in from the garden with spider in my hair when cutting hedges.  Youve made me feel nostalgic now, thinking of the lovely george, very spirtual person, he had a houseboat in tibet l think, beautiful lake with masses of lily pads.  Ironic how l now hear more of Georges music on the radio than beatles, john or pauls, Love here comes the sun, l was so jealous of patti boyd, read her book about her George, and Eric, greedy woman.  interesting insight, George was a bit naughty at times, he and maureen,Still loved him.  Now l thought you,d have been a John Lennon fan, biker, although George actually had a repartee with bikers, he invited them into studio and they arrived in masses and stayed a week, his response, There,s a time to stay and one to go, its now, and off they went.   His son Dhani spit of him, still miss him. Enough Beatle nostalgia,

my son will probably put my remains on the compost heap, little so and so, not that he,s or they are little, 30s now and big. Your lucky dad growing up in that time and place. 

I had days too. I wonder where they've gone? Perhaps I'm making them up now and I'm not really here?

When I first moved into my bungalow I was early ME and I had to keep touching the walls to make sure they were real. I was in such a place of unreality. I'm better than that now through good diet and herbs. I don't have to touch the walls to know I'm here.

Like it, the blonde might have been his child bride, Mandy l think, didnt like Bill Wyman that much, bit sleezy looking, would be good for his ego to get it deflated a bit, but an interesting exprience.

l liked Roger Daltry most from the Who, and knew he was a keen angler, still is l think, seems a decent guy, . l dont think he and Pete Townsend got on too well, as with others in other groups, but its their job to work together, l can picture it, early morning by the lakeside, lve  dated anglers, been there, scenery and chilling out makes it worthwhile.  Its a pond it the garden now, still a pleasure to watch the fish and frogs. So many of us drawn to water, l am, love it. 

Wish I could garden. It looks like a forest and everyone in the village thinks I'm lazy.

And yet the government are not adverse to breaking the rules and tax dodging for themselves. Oh how ironic! If only I had the energy to rebel.  Perhaps I could summon some up.

I love my garden Georgia but it's half the garden it used to be, like me; I'm half the woman I used to be! My brother sarcastically said to me a while back that my garden looked nice but neglected! Really upset me. On the same day he said his friend also had CFS but was able to walk her dog every day and that I should get out more as it would do me good! My blood was boiling when he left my house! Needless to say he doesn't know what it is to suffer from the condition 

I had to get lots of help with mine and back up from people that know me , even my local MP wrote a letter so I don't know how they do it. Except that the rules are tighter now but they didn't used to be.

Oh yay scar bragging time! I haven't got much to boast about but I have a scar that goes from just above my pubes to just under my boobs.

It was surgery obviously but the interesting thing is that my sister was doing Reiki on me years later and I went back into it, experienced the surgery again awake and I heard everything the surgeons said and watched myself being cut open, the whole thing.

Just goes to show, we remember more than we think we do!

and peoples priorties differ.  she may walk her dog everyday, but there must be some trade off.  That might be the only thing she does. And, sitting on a park bench whilst letting the dog off the leash is not the same as walking it!  why was he being horrible to you?  Is it to make himself feel better about something?

How can you possibly refuse an offer like that Brian! If you don't snap him up I will.

Your brother clearly doesn't know that we have it in varying degrees. I was told by the local ME group lady that I was the worst case of it she's ever seen and she'd seen a lot.

Oh very much the rocker and the only time that I've not had long hair was for my army service...

My first motorbike was an old BSA Goldstar that I remember stripping down to the last nut and bolt, re-building and then doing a ton over what was then the new M2 motor bridge over the Medway, good days....

Trout fishing has always been a big part of who I am and has always been a great source of peace and calm to me and I always remember the old proverb.... "The gods do not subtract from the allotted span of men's lives the hours spent on fishing."

I haven't the enrgy to actively do much fishing now but I am still able to sit by the water's edge and reminisce, which helps. Luckily I'm in the wilds of Devon with the sea and river just a few yards away so life could be worse.

As nice as I'm sure Brian is, he's not my type, which is probably a good thing in this discussion, given that females with the condition outnumber the men by such a large ratio  ...

It's bad enough for us straight guys trying to find a female partner, it must be murder if we were gay....

Just a bit of a strained relationship and lack of understanding for his little sister! I won't discuss it with him any more.  

Exactly Georgia. It's ignorance and an unwillingness to accept that these condition(s) exist because there's nothing visible to see and then you get told you look well. I tan easily and I have caught the sun on my face already this year just from sitting  in my 'nice but neglected garden' (yes, the sun, that elusive object!) so I'm waiting for people to tell me how well I look, which then makes me feel like a fraud! Never judge a book by its cover eh! 

Wow weee trout fishing with Roger Daltry; does that count! Hehehe I think you hit the jackpot Mike! I love trout.

I've just died from jelousy Mike! The best bike I ever rode was a Honda Goldwing and it wasn't even mine!

UNBELIEVEABLE!!  i was born in Banbury and have lived here all my life.  I wonder if  I know/knew your Gran.  My mum died recently but I bet she would of. Tx

That sounds brilliant, I bet his estate was lovely, especially with lakes.  I know he used to live (may still do??) kind of locally to Hampshire as some friends of mine who worked at the Portsmouth Dockyard (we were all Telephonists) came into work one day and said they'd met Roger Daltry, they all said he was very short!!!  No that that did him any harm eh!!

That's a great 'claim to fame', them using your motorbike for "Quadrophenia", how exciting.  I loved that film.  I was more of a rocker than a mod, though in the 70's, I prefered "The Who's" documentary film over Led Zep's - much to the annoiance of my brother!!

I feel very lucky to have grown up in the 60's and 70's, even though my favourite era is the 1950's!!

Did you loan out your motorbike for the rockers or the mods for the movie "Quadrophenia"?

 

Long I'ved noticed that there are quite a lot of hot short guys. They can be so compact that they're perfectly formed but it isn't a gereral rule of couse.

The place he lived, with the lakes, was in Sussex, in a lovely woodland with the lakes that he'd had built himself, in the valley. It was a stunning place to fish...

The bike was used for some promo shots, it was a bit blinged up and chromy... Nice bike though..

Hi Georgia, yeah you're right there, I've known lots of lovely short men over the years.  It can be a problem for me dating though, as I am nearly 6ft tall!! People always tell me not to worry about height difference, and it's not that i worry if I'm dating someone, just that I have always felt a bit gangly and clumsy around short people, and I like to be shorter than a man on a date or longterm relationship as it makes me feel more feminin.

Not that Roger Daltry would have ever asked me out!!!  LOL!!!

It's just something that's stuck in my memory about him as my pals just kept going on about his height!!!  The irony of it is that they were all short too!!  My hero James Dean was 'only' 5ft 8".  I'm actually 5ft 10 and a half (I've lost half an inch over the years!!) - but JD's girlfriend, Dizzy was my height and she says that he always made her feel shorter and more feminin.

Butting in on the 'claim to fame' posts, I met David Jason before he became famous! I used to go and see him in theatre plays and wait backstage for him afterwards. He always used to sign my programme and give me a kiss on the cheek. I had quite a crush on him!. He was so friendly and is still such a talented actor. He was brilliant on stage and his stunts were so funny! He once wrote a lovely letter to my mum when she was ill with cancer. We were very touched by his kindness and sincerity. So that's my claim to fame!

Hi Mary, what a lovely person to know, I imagined he'd be a lovely man.  He is brilliant isn't he - I used to like him in "Porridge", when he played an old man!!  The funny thing is that as he's aged, he is resembling that man in the TV prison now as time goes on.

How lovely of him to write to your mum, it just shows how kind he is doesn't it.  I always think it shows someone in their 'true colours' when they have the personal touch doesn't it.

Back in about 1980, I wrote to the actor, Martin Sheen and asked for his autograph.  He sent me a huge picture, signed and a lovely letter to go with it, and even addressed the envelope himself - not something you usually get from Hollywood stars eh!!

I stupidly sold it a few years ago, along with other autographs, and wish I'd kept them.  Mind you, I could write to him again couldn't I!!

In 1977, I dragged my mum to London to see a stage musical based on James Dean, and sitting 2 rows in front of us was the actor Nigel Havers. He wasn't quite so well-known then. I was 17 and I think he must have been about 34?  A few years ago, I was watching breakfast TV news and they told the story of a young mum whose house had been burgled and all the Christmas presents were stolen, it was really sad as she was a single mum and wasn't insured.  Next minute they said that Nigel Havers had just phoned in, and had written a cheque for the family, enough to buy lots  more presents.  I've never forgotten it as it was such a lovely and generous thing for him to do.  He's a pretty quiet man and he has never mentioned it.  There are some lovely people about aren't there.

Oops - meant to say Nigel Havers must have about 24 - NOT 34!!!!  He's not that old now!!!  LOL!!

Wow, Martin Sheen! Quite a dish. How nice to hear that he took the time to write personally to you! And that's such a lovely story about Nigel Havers. It's good to know that there are actors out there who actually care about other people! I still have David Jason's handwritten letters. I can't bear to part with them! My mum and I used to write to his home address which, would you believe we found in the telephone directory! He used to get slated in the press in his earlier TV programmes and we would write letters in his defence saying one day the critics would eat their words when he became famous! 

I think I only got DLA because I'm so white and thin Mary so they believed I don't get out or cook much! Certainly not because I told them I was ill!

 

My sister's nearly 6 foot and has an athletic type body, she teaches surfing. One of her most gorgeous looking boyfriends was about 5 ft 4 and they looked so sweet walking down the road together!

Johnny Depp is my 'Oh no I'm having a hot flush' favourite actor and he's compact.

Amazing!   I've got a crush on him too but then who hasn't! I've also got a crush on Dara O Brien.

When my son was little I took him to see 'The Little Shop of Horrors' in the theatre. We sat in the second row and Sue Pollard was in it. For some reason she kept looking at me and I still wonder why to this day!

I haven't, ... definitely not my type, ...though I do like his acting....

I'm one of the six foot tall variety too and it always surprises me just how short some of these actors are. You only have to look at the likes of Bob Hoskins, Michael Fox and Martin Freeman... It must be something to do with wanting to stand out in a crowd ...

I'm shocked and horrified that you don't fancy David Jason Mike!

Tom Cruise is really little isn't he and he was with Nicole Kidman, who's really tall! I think personality and charisma makes people taller.

And good camera angles.....

I know where I'd love to angle my camera! And I have a good aim, look out!

I don't blame you, you simply cannot get rid of them.  Great that you used to write letters in his defence - and oh boy have the dis-believers eaten their words now eh!!!  Great stuff. xx

I agree Mike, I think shorter men and women too, think they have to prove themselves to make up for lack of height?  Wouldn't the world be boring if we were all the same height - then again, if we were, we wouldn't know any different, if you understand what I'm blabbing on about?!!!!  LOL!!

Yeah, she's the same height as me, though she doesn't look exceptionally tall on screen does she?  I guess it's because she is very slim too?  I used to be that svelte, but over the last 5 years of M.E, I've put on about 5 stone - gross!!!  I watched "8 out of 10 cats does countdown" a couple of nights ago, and they always go on about the height of the comedian, Greg Davies, poor guy!!  My sister is 5ft 2" and her boyfriend is 6ft 5"!!  BUT, my legs are longer than his!!  Weird isn't ti!!

Ha ha!!  I've only just read that Georgia, it's given me a good giggle!!!

Hi Tina, sorry, I've only just read your reply about Banbury.  My mum's cousin still lives in Banbury, her name is Wendy Carter (she has never married).  She lives in Ruscote Avenue - where she's lived all her life.  She is in her 70's now.  Her mum and dad were Glady's and Harold Carter.

My gran would be 110 now!!!  She sadly died when she was 91 (great age though).  I'm so sorry to hear your mum passed away recently.  Wouldn't it be funny if she did know my family?!!!!

My gran's maiden name was Castle.  She married my grandad who was from Portsmouth, and they came back down here to live.

They were a big family, my gran had one brother and 4 sisters.  My mum was evacuated to Banbury in the war, along with her mum and sister.  They all lived in Ruscote Avenue back then.

I haven't been to Banbury for years.  Sadly nearly all the family have died, and Wendy is the only one left now.  My sister and I are thinking of visiting her sometime this summer?  if I'm well enough that is???

What a coincidence that you've lived there all your life.  It's quite a small town really isn't it.  Although my gran lived the most of her life in Portsmouth, she still had her Banbury accent - I love it.  She used to call me, 'our Val' (pronounced, 'air' val).

My parents used to take us all to Banbury a lot in the 60's, I have always loved it there.

Hi Val,  small world isn't it.  I don't know of any Carters, but I did have a sewing teacher at school called Mrs Castle.  Ruscote Avenue is just down the road from me.  I actually use to visit an older lady there in around 2003/2004, I use to work for a care company.  Yes the good old Banbury accent "air" instead of "our", my friend's mum speaks exactly the same.  Banbury has changed greatly, grown immensley since the M.40 but still small in comparison to other towns, and unfortunately we are seeing a lot more criminal activity than what we did years ago.  Years ago such thing was so far and few between.  You will know about the Banbury Cakes, which tourists still love and enjoy. 

It has been really nice to chat to someone who actually knows Banbury.  Sometimes it feels we're off the map.

Tx

Hi Mike, just read your reply to Lynne.  Devon is beautiful isn't it, and must be great for relaxing?  It is such a shame that we have to give up on hobbies isn't it.  I used to go walking for hours in the countryside, or cycling off-road, but I just can't do it now :-(  But I'll never give up hope, and try to walk occassionally, especially if the sun is out - like today!!  My sister has just gone off on a cruise to Italy, I am rather jealous as that would be ideal for us M.E/CFS sufferers wouldn't it.

Oh to win the lottery, it would definitely change my life - and others too, as I'd spread it around!!  Just to have a good life would be lovely, even with M.E, as there'd be no worries on top.

I really love Devon and Cornwall, it's SO beautiful.  We have a great country really, don't we.

WOW Geogia, what an experience.  Did you feel any pain too, whilst watching yourself being operated on?  How spooky.  Wouldn't it be horrible if the gas didn't work, to put you out completely, and you could feel everything, but couldn't move or speak - that gives me the creeps!!!  

Cor, that sounds like great fun.  I've only ever been on the back of motorbikes, and on holidays in Spain and Greece - it's such a lovely feeling of freedom isn't it.  Years ago, I sat on my brother's mates huge motorbike whilst it was parked near our house.  They didn't know, but as I got off, it fell over.  I couldn't lift it at all, it was SO heavy!!!  I just left it in the end.  I only told my brother's mate about it just a few years ago!!  Luckily he laughed!!! Phew!

Yes Val, I'm lucky in that I'm only a few yards from the quay, which is where I get my daily exercise these days, so can wander across to one of the benches and sit there watching the boats go by and on a day like this, the Mediterranean couldn't be better...

It gets a bit chilly in the winter mind you but hey, the Med has it's bad days too...    Devon is very unspoiled generally though and there are some lovely places within an easy drive to really enjoy the country or sea...

That sounds really lovely.  I reckon it's probably the best part of britain down your way.  Southsea is okay, but there's so much they could do with it, like having waterside restaurants like abroad.  I'm sure it would attract many people and visitors??

I haven't been down to Devon for a few years now, but I have great memories of staying there now and again in the past.  I have quite a few friends who live down your way too.

I'm glad that you can go and sit by the sea and rivers, it must be quite therapeutic? Do you do any drawing or painting whilst sitting there?  it must be very inspirational for an artist?

Isn't that strange that you live near Ruscote Avenue!!!  I haven't been to Banbury for a few years - I think the last time I visited was about 1990.  Yes my 2nd cousin, Wendy tells us that it can get quite rowdy at times, and sometimes it crops up on TV, with criminal activity.  I absolutely LOVE Banbury cakes, they bring back great memories.  I remember carnivals in the town centre, and there was one when we visited in 1990.  I have a photo somewhere of a float with 'Batman' on it!!!!  Of course, there's Banbury Cross - where Lady Godiva rode through, naked on her horse!!!  "Ride a cock horse to Banbury Cross"!!!

My mum always says about the May Day, May-pole dancing when she was in Banbury during the war.  She has such lovely memories of Banbury.  She was 81 last week - but, has more energy than me for sure!!!!

My gran used to tell us of when she was a girl in Banbury - and the houses had back alleys with cows stomping through them every morning!!  She was terrified of them!!!  I doubt that goes on today, and I expect the houses have been modernised - though my cousin's in Ruscote Avenue has been pretty much the same over the last 60 or so years.

Now I am wishing I could eat a Banbury cake!!!!!  When we visited, we used to buy loads and take them home to eat over the next few weeks!!  There was 6 of us at home though, so the cakes didn't last as long as we thought they would!!!!

It's so lovely to 'chat' to someone who lives in Banbury.  I'll have to tell my mum, she'll be very interested. x

No I didn't feel any pain when re living the operation and I wasn't even frightened, it's was just so surreal and surprising seeing it and listening to the surgeons talking casually! I mean, I was looking into my insides and it was nothing to them, like they were boiling an egg or something!  

And how could I have seen and heard it all it with my eyes closed and unconscious, and remembered it without knowing that I did? Stunningly strange. 

I love living in our tiny village in Devon Mike! There's are lots of woodland areas and my favourite I call the magic wood. I've snuck into it because it's on the edge of a farmer's land and barb wired. It looks like it's never been messed with by humans; it's so ancient and unspoiled. There's a stream running through it and the air is so fresh. 

I've seen a golden eagle too and wrote an articule about golden eagles and sold it. I didn't get much for it but it was lovely to have my words appreciated. 

hi mary. hope ur enjoying the sunshine/heat? wondering if there's any progress on the dating project?

Caitlin

Hi Caitlin. Yes,  enjoying the sunshine when it comes; bit intermittent this year isn't it! Thanks for enquiring about the dating site but I've decided to put it on the back burner for now as there is much more to setting up something like this than I originally thought and I got a bit worried about being able to manage it. Hope you're ok and enjoying the sun too. 😀

Mary, it would be easier just to join Facebook and join its singles group for ME/CFS people, wouldn't it?

It struck me that it might be worth while for people with invisible disabilities to club together in some sort of social group. We would sympathise with one another.

I might disappear for a while - my computer is extremely slow on this site.

Don't let the dating idea burn on the back burner - listen for your smoke alarm.

Hi Brian. Yes I have seen that on Facebook and added my like to it. I just feel a bit jaded with it all now! I tried a normal dating site, telling people in my profile that I had CFS but people with unrealistic expectations still contracted me! It's left me feeling exhausted! 

hi mary. indeed the weather is a tad inconsistent. it's 'april showers' in my neck of the woods @ the mo. if u decide to resurrect the dating project in the future count me in. it was a lovely idea . it got us giggling & in touch with out more romantic sides - quite uplifting. thank u.

Caitlin

It certainly did spark up a lot of humorous conversation and I felt very uplifted myself! There was a lot of genuine interest wasn't there? It's just a shame it was a bit too daunting to carry on with the idea.

Mary, having done quite a bit of web design myself I'm not all surprised that you found the whole project a bit too too much when you'd delved into it and found out the amount of work involved.

No-one would want you to take on anything that's going to make you worse though so I'm sure everyone understands totally. :-)

It is a shame that there isn't anything for us sufferers out there though, I'm not a user of Facebook, it's not really my thing, so I suppose like many I shall just have to resign myself to a boringly celibate life, which when I come to think of it, is an even bleaker thought than having ME .. ....

Thanks Mike. Makes me feel better as I felt a bit bad because there was so much enthusiasm for the site. I also suggested it on the Action for ME forum, and loads on there were keen on it too. It does get pretty boring and lonely but I got so tired trying to get the site going that it's a relief not to be thinking about it any more! .