Life of a hermit priest!!!!

Okay I am in the minority being a bloke with Fibro--big time, reynards, IBS etc etc, well I'm sure you all know the rest?

Married on paper, but leading the life of a solitary hermit, mainly due to the FM of course that prohibits a what was a 'normal' life before all this started.

'Banished' to the spare room night time due to my nocturnal FM 'habits', my 'wife' hit me a lot harder verbally, much more than the FM ever could, after I enquired about any intimacy.

She does not want ANY physical contact as in her words " I don't want to catch or get anything like you", that remark blew me for six!

Okay its a lot of ignorance on the understanding of the condition of Fibromyalgia, along with all the Doctors, Consultants, Registrars, Pain Consultants, Atos(ers), DWP, etc but ever I had the need to put forward a very strong case to the likes of Atos or a tribunal of 'how my life is affected', that surely is a VERY strong point.

I am already missing out on life--all the things that I used to do and enjoy, work, hobbies, interests and a social life--all now gone, even just a bit of company, a cuddle and more--all gone. Its not really a life eh?

I would appreciate any comments, not only the blokes but also from a womens perspective, as I certainly seem to have hit that brick wall hard?

28 Replies

  • I couldn't help replying to your blog even though I don't have the same problem as you. I do find intimacy difficult at times due to pain and tiredness, however I always make sure me and hubby have a cuddle. It's about communication. I don't think you have this in your relationship and would suggest some form of counselling. It may be there are other issues that need to be redressed.Please talk to someone, doctors have good counsellers working at the surgery. I hope you can get some help. Take care

  • Thanks for the advice, but as I'm sure you can appreciate I really have had my quota and enougth of the medical profession one way or another.

  • I am so sorry your going through this alone by the sounds of it, your still the person your wife fell in love with and married it is not your fault you are ill. I know it can be lonely at times I have the most wonderful partner, family and friends who have all take the time and effort to find out more about my illnesses they love and support me I am truly blessed, I cannot imagine what it must be like to be rejected through no fault of your own. I do get lonely at times as my partner works full time and my family are scattered around the country but I know they are only a phone call away. this site is wonderful for help and support, it is a big change as you have to adapt to life differently I worked since I was 16 and am now 49 my employers had to let me go through ill health but they did try everything to try and get me back to work unfortunately I now cannot work at all and although my brain is willing my body isn't. I do try to keep moving as best I can, I like to read and potter about the house, I also do a lot of research on the internet. Mahjong is great to keep the mind sharp. I have also done a grateful jar as I suffer with depression I wrote down on pieces of paper all the things I am grateful for and put them in a jar with a ribbon of hearts tied around it and it sits on the hearth near the open fire and whenever I begin to feel a bit down I just look at the jar and it lifts me. I hope you feel better soon sending you fluffy hugs :)

  • Thanks for that, interesting reading. I am on my second marriage, but none of my three kids (adults now) from my first marriage really have much to do with me--I guess dont have the active dad of old (ex Fire Fighter with a good life) and do not know how to deal with it. All 'friends' have long time gone and I really do not see anybody at all, other than medical profession. Don't help living more in the country (ah peace and quite) but cut off from just about everything and thats the truth. So no love, no support, no friends,no social life, no going out. I had it all but the great Fibro power that be, certainly pulled the plug big time on me and dealt a severe blow all round. Even stranger nothing ever goes right now, no matter what I do or at least I try to do with the best intentions. So really knocked down from every quarter and its difficult enough to remain up standing and strong in the

    first place!

  • Hi there jo-lynn, I'm sorry I can't answer this in depth now as I'm just off to a dear friend's funeral, but I will come back to you later, having read what has been said I would like to add one or two things....... Hang in there, I'll catch up later today, thinking of you though.

    Foggy x

  • I will look forward.

  • I`m not much good at helping out with advice. but I felt that I had to say something. Just hang on in there mate we are all with you

  • Nice to know that I have got fellow fibro 'friends' somewhere out there

  • Hi there Jo-lyn

    You are not alone, never, especially here :)

    I can't manage intimacy with my husband and we've had separate beds for years.............. he snores and steals the duvet and I wriggle and writhe and need the whole bed :o It got to the point where we were falling out all time so now we have our own beds and can sleep when we want, he's an insomniac near enough and also has nasty illnesses like us :o

    Its sad to hear your wife's opinion, maybe its because she doesn't understand the illness and communication is the only answer to that. You could try to get some literature and leave it lying around somewhere for her to find and read without it being put on her. I had a terrible time communicating the pain and fatigue to my friends and family but I didn't give up. Having someone to talk to about your frustrations is also something to maybe think about and you can do that that through your local MIND centre without a GP referral, are you in the UK?

    Also, have you attended a pain management course? they take a holistic approach to managing pain and it includes a section on communication and relaxation. I found it useful and beneficial :)

    Ok I've bombarded you enough :o ;)

    There's always someone here too to listen :) and give support.

    :) xxxzebxxx :)

  • My wife has had all the books available--whether she chooses to look at them is another matter.

    Been there, done it got the T-shirt (fibro one of course) for various courses, tests, meds you name it been there--nothing helps.

    Its all a curse this fibro etc and I have just got to get on with it the best I am able

  • It is such a shame Jo-lyn we all know its not catching.

    I can't think why she thinks that but my OH was so terrified of hurting me after one occasion when my knee dislocated that he backed off a long time ago, can't really blame him I was screaming and not for the right reasons ;) :o and I've been left asking the why's and what to do's and it seems we just have to tolerate it and talk about it.

    Sorry that I can't really help you fix the problem but I and many others here care and we do listen :)

    Don't forget you can also chat through private messaging too if the topic is very sensitive :)

    Take care and huge fluffie cuddles to steal away the pain

    :) xxxzebxxx :)

  • Maybe you should show her this site and your blog and replies, maybe then it may shed some light, other than that find some one near you off here and maybe they coul talk to her. Just a thought!

    Vikki x

  • Thanks for your reply which is appreciated, but my wife I know would not listen to what anybody has to say, quite a selfish individual and a case of 'I'm alright jack'!

  • You know this must be a problem that many of us suffer from- the lack of cuddles and kisses. I am a very good kisser given half a chance. Sadly my partner is 12 years older than me and seems to have forgotton the art of fore play well any play actually. He seems to have disappeared into a shell at night time certainly no rumpy pumpy for me ( so many years since)

    Time and fibro takes its toll. Do talk to your wife and try and explain what you are going through so many of us suffer in silence and we dont need to. Talking makes you feel better.

    Good luck


  • I do think your other half would get on just fine with my wife--common non interests!!

  • Hi there, as said communication is everything , my OH is understanding in his own way if I feel tired he says have a lie down and relax which is good but sometimes it's nice to really talk which is so important. You don't say how old you are, but I think the intimate side of marriage does change as you get older and sometimes you need a little help like a nice relaxing spa bath ( which is good for the aches and pains as well ) with scented candles and soft music to put you both in the mood , do you think your wife would be up for this? It's worth a try maybe.

  • You are so lucky having an understanding other half and someone who listens with a sympathic ear when you have the need to talk. I do not have either of those sorry to say,my wife always tells me how busy she is with what she is doing and is never able to help or assist or listen!

    A shower is a struggle now days let alone trying to get into a bath--just might get in but not out without assistance!!

    Humm--sented candles etc sounds just the ticket, just need the right person to share with--well we can all dream eh?

    Oh yes age--the wrong side of 21 plussssss !!!!!!!

  • if possible speak to your wife, ask her how she really feel about your illness, does she feel angry and upset about it (I felt very angry about it at the start and I still do at times) explain how your feeling and hopefully you can come to an understanding. My partner is very understanding about my illness, we cuddle and kiss a lot and do manage to have sex, we laugh a lot at my forgetfulness and getting my words mixed up, we don't live together but see a lot of each other, he is moving closer to me next month so he can help me when I need it, but after some discussion we decided it was best not to live together (I find it difficult to be around people even tho he works full time, been here every evening would just annoy me) my daughter lives with me, in a few more years she will be going to uni and I already feel sad about that, we are hoping she will get a place near home so she can continue to live here, (she wants to be a vet) we are very close.

    I really hope it works out for you Jo-Lyn

    Good luck xxMaz

  • Thanks for your reply,its very much appreciated.

  • So sorry to hear about your marital problems, not a nice place to be when you don't have the understanding of a partner. Life is hard enough for us. My hubby needs a medal with me, he always gives me cuddles as like it has been said trying to be intimate some times can be like walking or running a marathon, and it hurts.

    I hope things get alittle better for you, hoping there is some one out there who will take on board what you have wrong with you

    Take care and keep your pecker up

    Vikki x

  • Now that did make me laugh--'keep your pecker up' indeed, in my dreams!!!

  • Thought that would put a smile on your mush....keep smiling

  • Hi there - I'm sorry to hear your wife is alienating you :-(

    It's very demoralising - I too have been in your position :-(

    I don't have the magic solution but I do have empathy :-)

    Stay positive - meet friends when you're well enough and who knows, your wife may well begin to "fancy" you again once she sees you're making an effort to live as "normal " as possible :-)

    If not, at least you'll be enjoying your life - we only live once :-)

  • Ooops - I've just read my post back to myself and it sounds a little harsh :-(

    I didn't mean it to - sorry :-(

    Life is so short - with or without Fibro - we only get one chance :-)

    That was all I was trying to say ;-)

    Regards, Tina

  • No problem, understand you fully. I do try to make the most of it and just cant 'pace' myself as Ive always been used to a active life. So I do find it all very hard but I am resolved to the fact that this now is how it is, so its that ever revolving circle, in a lonely, celebait fashion!!

  • :-)

    Yep - I operate a "burn and bust " policy - it's not recommended by the medical professionals but it suits me, so I can understand where you're coming from.

    Marriage is not easy when both people are healthy but add illness into the equation and it can be volcanic :-(

    At least you've got your motor biking buddies and your online friends on this forum to keep you sane !!!

  • Hi so sorry to hear about your problems, sadly no one that doesn't suffer what we do day in day out can ever totally understand how this disease can effect so much both physically & mentally. I had a similar problem to you back in 2000, after having my knee caps removed my soon to b husband started treating me like a patient not a wife, he wanted me dependant on him & hated when I had lidocaine infusions that helped at the time & gave me back some of my life. In 2003 the year I was going to be 40, I woke up 1 day in January & thought is this how I want my life to be living like siblings no love or affection even though I could have everything I could materially it wasn't enough. That day I decided after 6 half years of my 2nd marriage I wanted a divorce. Nearly 10 years on I am still alone, I have had relationships affection love & even though I struggle every day have no money even for those few times it was worth it, even though I'm in constant pain I find intimacy & the eventual glorious release gives me pain relief as nothing else can. I am 50 next year & never imagined the life I have had, no children, hardly any real friends but I know my choices in life, which let's face it this dreaded illness affords us little of those, were the right ones.

    Your wife seems very ignorant of Fibro or I hate to say but feel myself that perhaps this is an excuse, sorry I do not want to upset or offend, I just speak as I find. I hope one day you can get the life you hope for whether that be with your wife , alone or with someone who truly loves & understands Fibro & gives u the live affection & intimacy you need, I still hope to find the love of my life :0) take care gentle hugs Karen

  • Know where you are coming from on this and my sympathy goes out for you and the situation that you find yourself in.

    Perhaps its a good job that we do not know just what is 'round the corner' so to speak, otherwise a good many just would have given up years ago, or way ahead of knowing.

    As you quite rightly say, nobody who has not got it has ANY understanding of the constant battle, pain,challenges and embarassment that we all have to face on a daily basis.

    Perhaps it all makes us a stronger person in our own unique way, to just get on with it and face it, even if it gets us really down at times. If only the medical profession/ benefits agencies would see and understand this, to ease our pain and suffering and mainly stress from them.

    Hang in there.

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