Firstly I must stress that I am not moaning about RA, me and RA are getting along quite nicely together and, when I read the blogs on here, I realise that so far I have got off lightly. Eight months of MTX ( steadily increased from 10mg to 25mg weekly) + hydroxychloroquine appear to have halted the march of RA and daily life is ok with very little need for painkillers.
I know this may not last so I really appreciate the current state of affairs.
However, fatigue is my main problem, wake up tired, sit down for any reason and inevitably drop off to sleep. May only be for a couple of minutes. Hard to motivate myself, even when I am going out with friends.
Stress & Fatigue: my grown up daughters (all in their 40's) whom I love dearly, constantly off load their problems, domestic disputes etc onto me. Keeps me awake at night and you all know the knock on effect. They sort their problems but hardly ever think of letting me know.
I want to tell them that they need to consider my situaation and not burden me with all the c***p in their lives, am I justified or am I being self centred? I live alone with my cat and dog: they are not too good at listening to me!
You may have guessed I had a sleepless night due to the above situation and this morning I feel so tired and fed up!
Christine
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Christine44
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So sorry to hear this , guessing you are a natural listener and people come to you with their problems.. but you have your own needs too!
I guess you get lonely and frustrated too.. this site is a good vent for feelings and people will give you loads of.. support.. have you tried telling your family how you are feeling?.. bottling stuff up isnt good for ones health.. they might be shocked and want to help?.. they dont seem to have a grasp of how you are feeling.
I would try and see friends as much as possible, and see if there any classes/ activities locally that you can join.
Thanks for the reply Alison. I have a lot of interests: U3a, Saturday night's out with friends (local Railway Club: artist and dancing) friends who would welcome me for a coffee anytime, but it is hard to summon up enthusiasm, You are right: I should try to explain how this fatigue affects my life ... I have a leaflet on fatigue from the rheumy clinic .. they could read that!
Have a good day Alison and thank you again.
fatigue is big bear of mine too!.. it is a real pain..
Hi Christine
Glad to hear you seem to have your RA under control. There is no harm in having a listening ear but they are old enough to sort themselves out. You should try and talk to them, like you say, leave stuff for them to read.
"Grown up" doesn't just mean getting older!
It's good you have lots of things you like doing, perhaps you if didn't spend so much emotional energy on others, you would have time and energy for those coffees! So long as they know you are there if they really need you.... I have at this very moment have a very wobbly daughter trying to stand on her very unsteady two legs. I blame her dad (my ex!)
Thank you Julie! I think cuckoos have the right idea .. leave the little darlings in someone elses nest! Maybe I SHOULD start giving priority to my life. Hope your daughter's wobbly legs get stronger soon.
Hi Christine. Fatigue is something we all live with with RA. Some days it is worse than others. I have had several days of feeling I really should stay in bed as too tired to work up any energy for anything. I do find my cat and the 2 dogs are very sympathetic and I do talk to them a lot particularly when Himself is not here. Berry is very good at licks and will put his head on my knee and lick away any tears. Tilly also looks very worried if I am upset and will come and lean against my legs. Minnie cat will sit on the back of my chair and rest her head on my head. So animals do understand, probably more than we realise.
.I think your daughters are being rather selfish offloading onto you. But then again that's what mothers are for regardless of how we feel! Perhaps you should gently tell them that they are grown women now and should be able to sort their own problems out. Also remind them of the pain you experience and the fatigue - they need to know mum is not always available and they also need to know they could do more to help you as well.
Put your feet up later and try to have a rest for a couple of hours. Take the phone off the hook as well.
Like you I have lots of interests which do keep me going but friends tend to offload on me as well and sometimes I cannot cope with that - I have enough of my own problems! One friend in particular is very good at that but doesn't reciprocate and if I say I am feeling unwell, she looks surprised!
Anyway, good luck and have a chat with those girls of yours. Love LavendarLady xx
You are right about pets: they are very sensitive:: I think I even try not to upset their feelings! Must be more honest with pets, family and friends ... true friends will understand, pets will definitely be there for me even if it isn't feeding time and as for family ... well, remains to be seen!
And there is always this site ... I really do appreciate it.
I recognise my stuff in some of yours Christine. I've just re started tai chi which is about mobilising energy levels in your body. I'll do a blog about it soon, but I wonder if that might help those of us who do suffer from this dreadful fatigue.
Animals are very understanding and when they're close to us they really empathise. I'm also struggling with trying to get my daughter to understand. I wasnt terribly supportive of my mother who also had RA, so perhaps its come back to me! My counsellor tells me its about how I project myself and am working on that too, perhaps its about making people aware of what you're entitled to.
I hope you try it again and get some benefit. We're all out there, somewhere!
XX
Hi Christine,
Fatigue seems to be the most enduring aspect of this disease, even when the joint inflammation is nominally under control the fatigue still hangs around like a bad smell. My rheumy told me that it's the systemic effects of an auto-immune disease. In the past research has discounted this aspect of RA but now treating/ relieving it has become subject to considerable research - so we need to hold onto some hope about this.
Pacing is definitely the way to manage it:-}
You're right that emotional stress or distress is very tiring and best avoided. Re-educating your family and friends will take time, but it's worth it:-}
Thank you Cece. I am grateful to everyone who has replied: and will definitely try to get my daughters to have a little more understanding.
Take care
Christine x
Hi Christine, being a parent isn't easy and you never stop being one even when they have left home, this is what I'm always told and even though I only have one sixteen year old son he is the one who as always given me the strength to carry on. I suppose having had RA for seventeen years I could say that I'm lucky as my son as only ever known me with RA, so he as virtually grown up with the disease. Your situation is a little different though, you have RA, but your children (I say children even though they are adult!) have never really seen the side of you that suffers from this awful disease. The fatigue and the pain etc, although you say your RA is under control and I'm so happy to hear that, any type of stress can easily bring you down making you feel even more tired etc.
You have always been there for you children no matter what their problems may be, big or small, I'm afraid they still expect that and don't see something like RA as an illness probably just an inconvenience to you.
If it was me I would arrange to get them together, and with the help of the NRAS sending you some leaflets etc on the disease sit them down and tell them exactly how your feeling. Just because you can't see the illness doesn't mean to say it's not there.
It's time for you now and the only way to do that is to be honest with them and tell them, they are old enough now to sort out their own problems. Let them know you will always be there for them when things are bad but you can't cope with all the stress and sleepless nights you keep having.
Thank you so much for your advice. I really have underplayed the RA as far as my family are concerned: didn't want them to worry etc. Time for honesty I think!
Christine, I hope that when you read your blog your feeling brighter and less tired. Kids who'd have them. As others on this site have said they don't think, and they think that your always good for them to come to and moan. Be in bed next you know they are coming, that might make them think. I'm sure that if you told them they would listen.
Me neither, sometimes we can't help it. Have you looked into fibromyalgia, it seems to with ra. I've just been diagnosed with it. It makes you feel lousy, tired and fatiqued as well.I've had a bad night last night, weird dreams and pain down my right side, so i understand how you felt. I'm going to see if my paper has been elivered and make a cup of tea, earl grey i need its quality of relaxation.
My rheumatologist said that the dreadful fatigue that I am experiencing would improve once I get started on the methotrexate. I was really hopeful about this. However reading the above makes me wonder if the fatigue will endure despite methotrexate. Can anyone give me more information about this?
Hi Naomi, no the fatigue does not go away with the MTX I am afraid. I was told the same thing - natch - it doesn't. Fatigue seems to come in waves - some days I am fine just a little tired by the evenings and other days and for several days at a time, it is an effort just to get out of bed in the mornings and the whole day is a real effort to keep going. At those times, all you can do is rest as much as possible, turn off the phone, put on some music, read a good book and let the world take care of itself for a few hours. It will still be there when you surface!
Hope this helps. You have to learn to pace yourself each day and not try to do too much in one go. The hoovering etc can wait until another day - the dust won't go away it will still be there the next day when you feel better able to tackle it all. Likewise the washing and ironing - a clean unironed shirt is not the end of the world!
Love lavendarLady xx
Hi Naomi this is my first blog .My name is Evelyn i am 67 years old and have had R A for a year and a half.I am on the same medication as you.I fully identify with the constant fatigue every one battles with .It is the worst thing to cope with and its true any stress makes it worse.I also asked my rheumy nurse why am i like this? she said that the mtx causes fatigue along with other meds.So as i am finding out pacing yourself is the only way to survive that and learning to say no to too many demanding people.This place has blessed me so much as i read a lot of the blogs and because i live alone it so helps me not feel isolated with this illness.Many thanks to all of you you are helping me to be positive.
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