I am off medication at the moment, and am plodding on, but I just get so tired a lot of the time. I find that I avoid answering the phone and hope that people don't call to visit me as to be honest, I haven't got the energy to make and listen to the conversation. If I carry on at this rate I will become a hermit.
I don't want to sound a moaner but how do you get people to realise just how exhausting this whole thing is?
A friend wanted to call and I told her no I was in bed, I am sure I am offending people. who think that I am antisocial, but quite frankly that is the best thing for me at the moment.
Anyone else glad to be left in peace or am I going a bit weird?
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Chalmers
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I have a vision of a small island, no people , just my dog for company, some books , my knitting, a large comfy bed and no phone or contact with the outside world.
I used to be really sociable, loved company and still do, but am just so so tired I can't cope with talking most of the time or even the phone which can be worse due to constant tinnitus.
Problem is because we often look well folk don't understand so I make this great effort, they think I am fine and I plummet like a stone once they leave. It can take me days even a week to recover from one coffee with a friend.
I don't know what the answer is, I suppose we should try to explain but it is just so hard when you know they don't really understand as we look OK to them.
Thank goodness for the forum as at least we know we are just normal and trying to survive as best we can.
We shouldn't feel bad about it ,but like you I think maybe I am offending some folk as I did have many friends but have not the energy to keep up with them any more. X
What a lovely vision you have, sounds perfect to me.
I think that I have tried to explain to people, but I don't think they really understand what I am talking about. When well I am always helping others and sometimes I feel that if I cannot help them anymore, they have no empathy with me at all.
I think I am a strong person mentally, so I am afraid they will all have to like it or lump it.
I just take one day at a time, that is all I can manage,
I am not in the same condition as you at the moment, but I have had times when I want to just curl up in a ball and forget the world. I have to fight with myself to carry on. I hope you find relief soon and can get back to a happy, energetic state soon. God bless.
As soon as I read the first line of your post I thought 'you sound just like me!' Haha it's not funny but then seeing cuttysarks reply 😁. My circle of friends is a lot smaller than it ever was, the ones that understand I'm very grateful for and realise as hard as it is that the ones who were offended or give up weren't meant to be. Does that sound harsh? Oh I cry lots when I feel let down by attitudes but I think that says a lot more about them than me...
Again like cuttyshark, I dream of being on a remote island, sounds like heaven! I still have a young child though so I'd have a little chatterbox following me around 😁
I hope you get over this exhaustion soon, just don't answer your phone and do what you need to do to recover...
Thank you for your reply, I am relieved to know it is not just me who feels this way. I am glad for the good friends that I have got and just wish the others would leave me alone!!
I remember reading the actor Larry Hagman had a silent day of the week, he did not speak to anyone including his family on a Sunday. I now think what a great idea, I could do that easily.
Rollercoaster isn't it? Best wishes to you and thank you for taking the time to reply.
Yes, i have always been a social creature but I find the fatigue more distressing than the pain....but i have retired to a quiet little village , so all is good
I would like to be a social creature but on my own terms as and when I feel like it and well enough and not to please others. I feel that I am turning into a bit of an oddity, but part of me has such self awareness and self preservation and thinks 'ok this is the way it is now'. Wishing you well in your quiet little village, sounds lovely.
You certaintly doesn't get weird at all. I understand it. I have gor RA now for more than 22 years, a lot of surgery and different meds. But the most difficult part to deal with the RA is the the tiredness . Real friends stay, but when you doesn't experience it yourself it is hard to understand for people.
I wish you all the best and a big hug!
I hope my English is not too bad, because I am from Holland!
Your English is perfectly good, much better than my Dutch! Thank you for replying and for your hug. The tiredness is a nuisance, as we are always playing catch up, when we are well trying to do what we couldn't do when poorly. I have wondered if these long dark days, cold and damp add to it all.
Firstly you are not a hermit. You are doing what your body dictates to you, this is the way you will recover. The saddest thing is that people do not understand how draining mentally it is to come off medication and then get bette. This is a slow process, I feel that still not enough is mentioned about anxiety, mental illness depression etc. You must continue as you are doing until you feel well enough to cope with friends, I had so called friends who tried to force me into doing all sorts, they did not understand, more needs to be done to educate people. Like you said they look at you and think you look great when you are feeling ill. I do hope that you have family to support you. Take comfort in knowing that we have managed to overcome these problems and now carry on normal lives. Rest up until you are ready to face life again, once December is over and the days get longer this will help too. Do not let anyone force you to do anything you are not ready to do, this will only delay your recovery. I wish you well, you WILL get better very soon 😊😊 xx
Thank you for your reply and good advice, much appreciated. I do agree with what you have said about December, it is not a good month in more ways than one for me. The hardest thing is saying no to people and almost having to make further excuses rather than being the RA as to why you cannot go or don't feel up to it.
Roll on Spring (though all my flowers are still out from this year).
Oh yes this sounds so familiar. When my disease was really rife it was such an effort to go out and just did not want to see anybody. Because we look normal on the outside until we try and move nobody sees what is going on underneath and the pain behind that smile (or is that a grimace!!). Its difficult to go out for a meal with anybody when the kids ask 'do you need me to cut your meat'. Thank goodness I knew the caterers at a do we went to and we were on the top table I could ask them to cut my meat before bringing it to the table.
On the other hand please be aware that depression can catch up with you very easy with this disease so please see you GP if you feel this may be happening - I know I have been on the edge a number of times. Farm
Thank you so much for your reply. I don't want to see anyone at the moment, only a selected one or two who understand and know how things are for me. Thank you for your advice also about depression.
I know how you feel.. I went off my medication for nearly 6months to see if I could cope, unfortunately couldn't... I was exhausted all the time, really stressed and to top it off I have lost lots of hair and even one complete patch on the top of my head.. GP has given me cream for the hair loss. I phnd the RA Spec to see if I could go back on my medication which she agreed to.. I have to go back and see her in a month... Unfortunately I don't have a lit of faith in this Dr have only been going to her for 1yr. Previously I had my RA Dr for 12years and he was very good. I am also having a lot of problems with my back and in heaps of pain and was told by the RA to loose weight which is really depressing as inam only 6kgs overweight. Lucky for me I have a very good husband who can't do enough for me. I still get angry with him when I am in pain and feel so ungrateful... I feel for you and especially that you have no one to help you... Take care
Hello and thanks for your reply. I can sympathise with the hair loss situation, as this has recently happened to me. It was frightening to see the amount falling out. I have come off leflunomide and I believe I can see it growing back already, certainly along my fringe hairline. So relieved about this, as methotrexate also made my hair fall out.
Your husband will know it is the pain when you are angry with him, he does not want to see you suffer.
I lost weight on leflunomide, and then people would pass comment I can see on your face that you have lost weight, in other words I look haggard!!
Yes I totally get you and I feel like that alot but then I wrote in my diary that I had short walk around the village and spoke to someone and that moving and trying to do things were keeping me alive.That person did ask how I was unlike my daughters do but even her remark about " you get like that when your old" made me laugh later.At the time I felt like punching her as I'm just 57.Illness has weathered me thou.
I miss the company of people thou.I can't work anymore and am stuck in the house all day.Its only a small village here and no facilities so I get depressed not chatting to others.You hear of people who have retired and died not many years later as they just sit there and I'm afraid that will happen if I don't try something else I will just vegetate.With being like this my brain has gone dead thou.
I suppose people do tend to drop you off the radar if you're not fun anymore and on their wavelength.Only time I get visitors is if I invite them.
Thank you for taking the time to reply, I hope that 2016 is better for us all.
This age thing makes me laugh, it is so subjective, I have a friend who is always saying to me ' you are only young' when I was your age I could knock a house down!! In other words I am not up to much.... I am 60. She thinks 60 is young.
I know I don't have the energy I should have, unless I am pumped full of steroids.
I've tried using the "spoons" explanation to people - but they don't listen for long enough to get the point. So I just say that the illness means I can only do a certain number of things a day and that I have to pace myself. It does mean that my husband is fed up with me not wanting to do things at the moment and my GP thinks that I am depressed - and I lose contact with people because they don't see me. It's one of the things I find really difficult to cope with.
I had to send my physio an article about chronic fatigue and she read it and changed behaviour. It sorts the sheep from the goats to go through something like this RA. I just try to keep visits to an hour long not always possible!
An hour is enough, I went out for a lunch this week and knew immediately I had made a big mistake, it was crowded, noisy and absolutely draining.
I find it hard telling people not to visit as I am just not up to it, I know they take offense. One phoned last weekend and wanted to call in, I said no I was not great and in bed, not heard from her since.
This is going to sound awful but reading your post made me laugh! The number of times my friend who has RA as well as me say we're too tired to talk😂 We are a pair of talkers and that's for a fact but sometimes it just too much to have a conversation. She'll phone me and not long after say "you're tired" so we carry on the next day. RA, fibro they all tire you out so I just go with the flow. If someone wants to talk and I don't I just tell them I'm too tired. I've really stopped worrying what people think. I also do 'I want to be alone ' my own company is enough some days.
I have contemplated putting a do not disturb sign on the front door, and I could perhaps put a pre-recorded message on the phone, Elaine is too tired to talk today, please try again later! It really is odd, because my face feels tired and my mouth just doesn't want to talk, I think perhaps my brain is in resting mode and having to talk forces it into action, when it was happy resting.
Having had many years of chronic illness,the friends I have now are largely those who understand my periods of withdrawal . I still hate letting people down though. I have several things I will have to cancel this week.
I love to see my little grandson but some days haven't the energy. Thats the saddest thing
We've just had six hours of a family visit. At one point I hid in the loo! Anyway that one is over for the year, and I've survived, and am looking forward to a quiet evening with just some telly.
Like Hilsam my relationship with grandson has suffered because of the RA, I cant go out and do exciting things, but my partner does so I have to be happy with watching that relationship grow.
I'm 'funny' granny to Sam, not the one who takes him out, but I do make him laugh and read to him. As you say Cathie, we have to be happy with what we can do.
I think both are useful for a way for US to think about the problem, but I haven't found it easy to explain to other people, unless I have a captive audience (which only happens occasionally). Mostly I have found that people's eyes glaze over and I end up just saying "The inflammation uses up my battery so I can't do too much at a time. I have to rest to recharge before I do something else."
Yes, me too. I am almost always tired. Most days it takes me over an hour to get myself out of bed, then I feel ready to go back a few hours later. I work half-time, and on my work days, I generally just go to work, come home, cook and eat, and sit around until I drag myself to bed. A couple of days a week I don't actually do anything much other than go from my bed to my chair at the kitchen table and back again. BUT I do still have a bit of a social life, and can usually push on through if I'm enjoying myself... I just crash the next day! And I used to love unexpected visitors, but I really don't these days... I like the opportunity to say "Not today thank you!"
Sparsely inhabited islands are really not all you might imagine believe me!
This point aside however - I've been off RA meds for 18 months now apart from a rather devastating interlude of 3 weeks on Azathioprine in April/May and six months of Prednisolone. I don't have RA in my joints now but I do have systemic inflammation, fatigue and episodes of dreadful nerve pain. I find cat naps through the day help. My dread days are those where I can't get my naps. My husband and I work together and he now has this way of gauging when I'm getting close to madness with my fatigue. He says "my partner/wife just needs some thinking time now" and I head off to the car or even the toilet. It's not just the need to urgently sleep - it's the way I start rubbing my face and pulling at my hair and rubbing my knees if I don't have some time out. I also get really spaced out and dizzy when I'm tired so I'm really clumsy and walk into things or misjudge doors, steps etc. I heard an old friend ask "are you sure she hasn't got MS rather than RA?" the other day. Rather humiliating really.
Most of my friends have their own problems, from Bronchiastasis to Addison's to sciatica to CFS or have had cancer, psoriasis or depression or any number of other things. One emailed me in crisis from her remote island only today. Either I'm attracted to people who suffer, or else a lot of people are a lot less robust than we sometimes imagine. I think it's probably the latter. You just have to dig a bit to find the commonality I suppose.
Mind you I'm spending Christmas Day at my uncle's this year. He is 78 and has just had an operation (his first ever) to remove a cancerous tumour from his bowel. My cousin is living with him and her young son and pleaded with us to join them. She's obsessed with natural cures and auras and he's obsessed with talking about the nitty gritty of his recent operation so it's not going to be a bundle of laughs. I've already chosen the toilet with the thickest bath mat and will have a small cushion planted in my bag!
You made me smile Twitchy about the prospect of your Christmas !!! I can just envisage you sitting on your mat in the loo desperate for peace.
Your description of what happens when you don't have your naps is bang on the same as me.
I also get really clumsy, walk into things, drop things, can't speak properly etc. I have to stagger up the stairs and lie totally flat in silence for ages before I recover. If we are out I have to go and sit in the car and put the seat back.
I think I will also be spending Christmas in the loo. We are having 14, but just all the close family. I try to hide but my wee grandson will always find me!!!
Understand what you mean about sparsely populated island, I lived in a very small village for six years just after we were married and sometimes those places can be harder to cope with as everyone knows everyone and it is hard to be anonymous.
No, I didn't mean a sparsely populated island but an uninhabited island!!! No humans at all.
No one but me and dog!!!!
Wishing us all good cheer and happy times this Christmas! Do send us an update!
C x
My friend and her husband are the only inhabitants of the island I'm talking about Cutty. Nightmare! As long as you keep it as a fantasy though I'll let it go!
Loos are a better option privided that they are pleasant, clean and warm. The odd flush to let people know you are still alive is probably a good idea though! X
But remember Twitchy I said no humans, the husband on your island is one human too many !!!!
Fill the place with dogs!!!
Good idea about the regular loo flushing , will keep them away, you might also have a bug they don't want to catch ,so they will keep away even when you come out of there!
Xx
Spot on Cutty! And yes you are right about the island too!
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It helps to talk....
Our poor feet suffer too
Tired again.
