Not sure if i have spelt the title right,but you get what i am trying to say.
This morning i was talking to a very dear friend of mine who is 84yrs young and she is a lovely lady. Anyway the conversation leaned to being lonely. I said i can be lonely even being married. My hubby has two allotments which i encourage as it is a pleasure for him and gives him a break from me. Though i can be lonely even if he is in the house as he looks after the house the meals and everything in between. So i am now here on my own and i spend hours here on my laptop and yes i get lonely not having anyone to talk to.
Now how many people will own up to being lonely especially with all that we have wrong with us. I try to do things i have my colouring books and my garden (which is becoming a struggle,hubby helps) and my photography which is my passion and i love taking photos of the flowers. I spend a lot of the day and evening on my own resting,we eat together and yes we do talk,but only when we sit down and at times i have to shout as he is going deaf which makes things harder as i feel like shutting up instead.
Now how many of you will admit that these diseases make you feel lonely?
The photo is of a honeysuckle.xxxxx
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sylvi
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Definately agree with you, I have a wife who goes to work (and worries about me coping on my own) and like you after meals I normally have to return to my oasis (bedroom).
My chocolate Lab makes the days less lonely and takes my mind off my pains😏
Having access to other RA ppl via this site always helps me feel less lonely as I know I can always ask for advice.
We have recently been on holiday where we met up with some Dutch friends. Lovely, lovely people. We got chatting and my friend really wanted to know about RA! This lady not only listened, she wanted to understand and she didn't show me her osteo! There aren't many like her. Most don't get it
The trouble with r.d. is I cannot do all I did before & go out with friends as often so tired to move. So after time they do not bother to include you. I do miss the girlie chats. It might be different for some people but that's what I find.
Its no different darling,my son and his wife went up the club last night and asked us to go with them, and as they don't go out until 9.30pm any wonder why i didn't go as i was too tired..xxxxxxx
I had the exact same issues as you - and because I raised that very issue over not being invited to a BBQ the other weekend,even though every single one of the other friendship circle were there,I got some really nasty texts and vm left by one 'lady' who I thought had always been particularly close with me(enough to live in each other's pockets while she needed help over a bad relationship,and going away on holiday just the pair of us) nope,apparently,because I had the mere 'gall' to raise this issue,I was being vile to people that had been very good friends to me(most who I haven't heard or seen for at least 2yrs,when I was at my worst) and I was also trying to throw a pity party!! It did infuriate me a bit,but at the same time,my true friends know that I didn't just 'dissapear' as the woman says I did,I was actually housebound while they were fighting to get my meds and my disease under control!! It just reiterates that the people who don't have these diseases truly don't understand,and some even give up trying if it interferes with their social life - it's certainly taught me who my true friends are over the bad times.... and I'm glad to say it's none of that lot!!! Thankfully this site has helped wonders,it's just a shame I only found it after my disease was finally starting to become managed to a degree,but it has helped me through some low times,esp at night when you can't sleep again and you're just so fed up of watching every box set you can find on tv..... it's also helped me through the break up of a relationship with someone that obv never gave a stuff about me,regardless of the fact we'd been together for the best part of 7 years.... nope,this site has been a godsend for me,and I honestly don't know what I would've done without it,as you truly can't explain how lonely you feel to someone who doesn't appreciate the struggles we have on an hourly basis..... they just assume that because you're living with someone that everything must be ok..... it interferes with a lot of them far too much to just actually sit and think for once of everything we've been going/gone through,and the effect that must have on us mentally,so they just pretend it's not an issue and carry on with their lives instead - I don't begrudge people having lives,it would just be lovely every once in a while for a text or phone call to be replied to so that you realise you're not on your own xx
My friend said a letter is so much loved and something as simple as that.The lady that caused me to write this post will be heartened by the response to something she said. Just because your happily married/in a relationship doesn't mean you can't be lonely. I have to say i find the times when i am lonely just sitting here on my own when hubby is down the allotment.xxxxxx
I have a great family & a very loving husband who will do anything for me & a great friend who understands the problem I have but it's the wider curable that don't. I belong to a r.a. club which meets once a month which is great as we all understand each other's problems.x
Yes being lonely in a crowded room is not new to me or at home with my husband looking back it must have start with the onslaught of RA not being able to join in with the other moms as my children had only just started school, but we just take it as part and parcel with the deases you don't realise how bad it is do you , but must be horrible for someone really on there own 🌺🌺
I am lucky that i do have my hubby and he does so much for me and i mustn't complain.If i hadn't got him i think i would be dead.xxxxx
Loneliness is my biggest fear.
I know I won't be able to have children due to my various health problems and my genetic conditions; 2 of which I have confirmed and 1 which came back inconclusive. It would be too much of a gamble and I wouldn't do this but selfishly, I wanted children. I'm worried I won't meet anyone because my health limits me but mostly because I don't want to be a burden on anyone. I've ended my new relationship as a result which is probably silly but it's how I feel.
Having said all that above, I don't spend all my time dwelling on it. I keep myself busy. Work is manic and occupies a lot of physical and emotional energy. I have a busy social life, a crazy but supportive family and amazing friends. I do all the things I enjoy, even if expensive; theatre, holidays, spa days, cinema and meals out. I've decided that life's too short and I search out the good deals.
I try not to think too much about the future but since my sudden health scare, I've started to think about it more and I do worry. My friends and family are beyond amazing. When I was in hospital, I had a constant stream of people to the point I had to turn people away. Right now, the phone doesn't stop and the doorbell is always ringing but I worry that their lives will move on and I will be left behind if I can't keep up, especially now my friends are starting to get married and have babies.
One of the first things I learned in my first days as a social worker was that loneliness will my work-related Achilles heel because it can't be fixed. Since then, I've realised that loneliness is not just social care's Achilles heel but its also society's. There's no replacement for true human interaction, for the time, for those little chats and just for the general care.
Social media has been a lifeline for me and I know it is for others. I'd be lost without places like this.
My friend who started me on this post said if someone dropped a line or two in the post means a lot to her and it meant even if they couldn't be with them they had thought enough about them to write to them. xxxx
I was saddened by the line 'I've ended my new relationship' because you don't want to be a burden. Love isn't like that- don't give up. I share your fears( Idread being a burden on my wife) but she tells me that this is wrong- loving someone is about who they are, not what they can do. If it were the other way round I'dbe honoured to care for my wife. Don't give up on finding someone if that's what you want. Don't give up on children either. One of mine is biological, but the other three are fostered/ adopted. There is usually a way. X
I'm so sorry you're lonely Sylvia. I feel lonely in the disease if that makes sense? I have an amazing wife who works from home, four gorgeous children and supportive parents- and 100s of animals! There is never a moment of peace! But, I am always managing pain/ stiffness. I can't do the things I want and I feel bad endlessly talking about it. My wife says it's like it' s all consuming so I try not to ( not that she minds - she's amazing). I'd hate to think I was a burden and I dread the day- if it comes- when my wife becomes my 'carer' more than my lover and friend ( she cares for me now but I measn feelings wise). Night is often the worst- lying in bed, in pain,trying not to disturb her ( she does so much and needs sleep). So I feel lonely in the disease if that makes sense? Sorry- prob not explained myself well! X But I feel for you and am sending you love and care,
Hi Sylvi, Yes, I am extremely lonely. After the breakdown of my long-term relationship (23 years), I moved to be close to my sister and her young family in France. Unfortunately, 2 years after I arrived, her husbands job was transferred to USA, and I had to stay put in a small village because I had put all my money in renovating my house and the housing market then went down. It has still not recovered, but am hoping to sell up and move to be closer to a larger city. Lots of people think that a life in the countryside is ideal, and I guess if you have a young family it probably is, but alone it is difficult. My sister passed away 3 years ago, but I do keep in touch with her husband and children, but they have all passed on to other things in their lives, as have all of my old friends in the UK. So I keep myself busy with my large garden, small house and dog. There is no point in being miserable, and I always speak to people when I get the chance. I worry more about other peoples problems rather my own. Positive thoughts to all. xo
I totally agree , there are times when everyone has gone out sndyou come into an empty house that it hits you . I got that sensation the other day for no reason and was like a thump in the belly.
Sylvi, I do understand what you are saying, but to be honest, I do appreciate being alone as I can seem to cope better with my pain and exhaustion better, sounds weird I know !! This way, I don't have to make an effort for other people. Since my hearing has become so poor it totally wears me out trying to listen to have proper conversations etc. And using the phone is a nightmare for me as well. Hubby helps me as much as he can but he's nearly 77 so I feel guilty about him helping and do try to involve myself in chores etc the best I can. My two girls face time me every night, plus grandson does as well and I really look forward to that and they try and get to see us at weekends and that's about it really. Me and hubby try to have two days out a week, it's tiring and an effort but does us good, we only go to Shopping centre or Sainsbury's so as I can use my powerchair and we always have lunch out so that's two days with no cooking !! I keep in touch with wider family and friends on Facebook (including you Sylvi, since we are Facebook friends !) and I love that. I'm ruled by my exhaustion and pain and I think my family have finally come to understand this though it's taken a long while for them to realise I'm no longer wonder woman !! I don't mind lots of 'quiet time ' alone, hubby knows when I am feeling poorly and that I need to retreat into my own world. I feel sorry for him because we used to do so many things together and I'm holding him back from any social life because he refuses to do things on his own, but I can only do my best. I suppose what I'm trying to say is I don't feel lonely even tho I spends lots of time on my own at home. Xxx
I love my home and garden darling you know by the photos i take even i find its difficult and not being able to do can be lonely as well as i don't like asking hubby all the time.xxxx
I know just what you are saying, when I had a house full consisting 4 children and my mother in law who i hasten to say we got on lovely. I said to a friend I'm in a full house and I'm lonely. She looked at me gone out. Now I might look forward to a bit of peace and quiet. It doesnt always help to be on your own.
I do live alone & find RA a lonely illness I hate having to explain my limitations because I look fine on the outside I still work but I struggle to share this bit of my life ...ive always looked after people my husband passed away from cancer 7 years ago & before that my parents . Im a rubbish patient but my reluctance to share makes me lonely!!
Yes I do that Sylvi, we've made the top end of our drive into a little sitting area with double wrought iron gates, I sit and drink my tea there and even in our quiet road people stop to chat if I'm sat there and sometimes come and have cuppa with me. I have lots of doggie friends who come to greet me at the gates always have some treats for them xxx
Now that is lovely. We open the garage doors and we have loads of chairs in there and i take my colouring books out as well. I love being outside,though not at the moment as we have had some rain i think it is the first in over a month.xxxxx
Morning Sylvi, I also feel lonely but I live on my own, oh but I do have a little dog called Harry, I talk to him but of course I get no reply. I am now 9 weeks post op after my wrist surgery and the more I do the more pain I am in. It doesn't help that I have been in a flare for a few weeks. My daughter does live close by but she is a busy mum of 3 girls and also works full time. How are you doing, it's not long till you have surgery is it. I wish you very good luck with that. Your photos are gorgeous to. Take care xx
Yes I totally agree with you, I feel very lonely and isolated at times , we have two dogs 🐶 and our whole lives revolved around them long dog walks and meeting fellow dog walkers, well now that I can't keep up or I am in pain the walks are done by my husband now so I stay home and do pretty much nothing, I also have very limited eye sight due to iritis and uveitis Which comes with the RA , so fellow members let's hear from you all that are lonely 💕 X
I agree with you! I was forced to give up a hectic job because of the RA and lung diseases. I loved my job, and the conversations with work colleagues, not only on the topic of work. I really miss those conversations, and find I think about them a lot in the quiet parts of the day. Although my husband is retired, and I occasionally meat a friend for lunch, I still feel lonely.
Yes RA is isolating and makes you feel lonely. I felt it at work when the team were arranging nights out and I could not go. Had to stand they were going bowling etc. It's a disease that robs us of a lot. Then we have to stop going to work and more adjustments need to be made. The biggest problem is that people can't see what we are going through they can't see we are disabled we look so we'll even if we feel awful. Most people do not understand the disease and what it is doing to us. They also don't realise that the medication can cause you to be ill sometimes more so than the illness itself. Most people with arthritis think we are being soft cos hey that have pain in a joint as well. So until there is more awareness of the condition and what it can do we will be isolated. Sorry hope your not depressed now as well as lovely.
I am not too depressed darling,i am doing okay and i hope by posting this i have helped others. I don't know how we can address this problem. I did say to my son and his wife that perhaps we could go out earlier in the evening so i can join them and they said they would so we will see. xxxxx
Yes definitely. I am married and also have to shout at partner as he is deaf in one ear.Will soon have to learn sign language as I am going deaf in one ear too...lol
Yes he works 2 days a week.He is a retI red decorator but now has driving jobs. I had to ask him to cut down to 2 days as I am lonely.I see neighbours walk past with dogs but only one will call in sometimes. I can't babysit etc now so children visit less even thou invited.I can't get out on my own so can't drive any more. I just look forward to holidays and am always planning the best so we see different places and people.
I always used to work but had to retire due to illness health that has just got worse afterwards.I miss chatting to people and being of help.I read people's stories on here every morning
It does seem that loneliness increases as people get older (recent research has reported) and often this seems to be partly because people cannot get out and about as they used to. With RD of course these limitations can apply at any age and it can be very isolating - as can feeling 'different'. Even when out with other people there can still be limitations as you cannot 'keep up' with them. My 32 year old cousin also has RD - for 10 years now- and has agreed to borrow a wheelchair as she was missing out on going on park visits etc with her young son, due to problems walking any distance. Even then someone will have to push the chair as her hands are too badly affected to use a self- propelling one. Pain itself can also be isolating as often it is all you can think about!
I am retired and seem to be in remission at the moment but still get tired easily and really have to pace myself. Must admit I do often wonder if I will have the courage to book a touring holiday again. I used to enjoy these before RD struck 18 months ago but now worry I couldn't keep up with a group.
I live alone, have always been relatively happy on my own but I changed my job last Christmas and now work at home rather than a 10hr office job with a 2hr commute. I immediately got a dog to ensure I would go out and at least say good morning to a few other people. The new job is quiet and not very stressful which gives me lots of time to do things in the garden and around the house, although with the change of pace of life the my body started to ache more, I became even more tired and more frustrated with myself.
I believe that this new role was meant to be in that it gave the RA time to 'breath' knowing I now have time to get the treatment that I need rather than just burying it as it had done, looking back now I've had these symptoms for years. I am more lonely now than before, missing the idle chatter in the office about this and that. I've always struggle to make friends and feel uncomfortable in new surroundings where I don't know anyone, which is a catch 22 as if I don't go I'll never see anyone. The few friends I have are busy with their own lives and families and I hate to intrude so I sit in the garden or take the dog for a walk and feel blessed I live surrounded by some lovely countryside.
Yes I so agree friends that I thought were for life, don't bother any more as I can not do the long walks etc I always try and be happy go luck, my husband is fantastic, but I often feel lonely, Especially when I see neighbours, walking to the beach and my husband has to drive me, but we have to be positive they my find a cure for this such a disability disease x
I personally think the word loneliness sticks in your throat just pronouncing it produces an enormous emotion it gives me a lump it provokes sadness and we have illnesses we didn't ask for and become so dependent on the medical profession They brush us off sometimes quite flippantly at times. And its sad because it wouldn't take any more of that drs time to treat you with the respect you deserve Anyway have a nice w/e But you touched on the essence of illness because it is isolating and and in turn I think most of us are lonely even when there's family about we are lonely. Maybe because we know if we expressed every pain or emotion illness drains from us the few people we see would run for the hills. Its a tough one.
Think you've definitely hit the nail on the head there Mintychristine if we were to even mention just a few of the debilitating issues we have to cope with on a daily basis you can picture people rolling their eyes or interrupting you trying to explain how their restless night is just as bad.... so frustrating,so a lot of the time,if not all,we just keep quiet and as 'jane' does,we just smile 😔 X
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Lovely trip away with my son 😁😁
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