I woke up in agony as usual today and realised that my overwhelming feeling is of boredom. I used to run, swim, dance, work 65 hour weeks and still be full of beans ( though I've had this, undiagnosed, since I was fifteen or so, it used to come and go and only be in one or two joints. Now it stays and is in all joints). I have four children and used to play tickle fight with them etc. We have a small holding full of animals and I used to look after them too. I have four horses and now my entire day consists of struggling to make sure they are OK and trying to save enough energy for when the kids come home. ( youngest is 13, oldest 22). I'm 41 and just think for goodness sake- another possible 41 years of this?! Pain is so so boring. Resting and being half drugged on morphine is boring!! Being exhausted is boring!!
Oh dear, sorry for the rant. My poor wife doesn't need to hear it again which is why I'm on this site so often! I will drink my tea and try and pretend to be calm and dignified again-really I think I'm about five and want to skip x pah. Hope you all woke up in a better state of mind!
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LizzieR
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You're quite right to share all this! I couldn't agree more, boredom and being helpless to chemical effects is infuriating. It's the lack of control over your life and the imposed new pace of life which is the most challenging to get you head around, on top of the pain. Morphine? Good grief, you poor thing. I though co-codomol was bad enough. Wishing you big improvements and the right meds bringing balance eventually. I'm only in the early stages but I can't even get in and out a swimming pool or do many of the fun things I took for granted. The most basic thing is like a military operation with all the planning required whether it's attempting housework or seeing friends. On behalf of us all I say, 'Aaaaaaaargh!!!'
I'm so sorry .im getting hot sweats .I saw knee dr as iv still have dysphagia I can't have an op and as I was pulled about my ankles and knees have swollen up .I took morphine last night x I can't swollow and tabs or capsules so I can't take much I'm trying but today I won't be doing much x find some painting by numbers or word search or the colouring books xx
Can you give us some pointers on how to look calm and dignified please - I am certainly not feeling that way this afternoon?? (v bad elbow day....and hands...and patience...>!)
Interesting....Looking back I realise that my life has also changed dramatically since diagnosis, similar in working silly hours etc etc. And a day's activity now is a tiny fraction of what it used to be. But am I bored? Not sure, as tiny things seems to give me immense pleasure now so I guess my horizons have changed.
Being blunt I wonder if you have to think hard about swapping aspects of your lifestyle? Nasty thing to contemplate all because of an unwanted disease. But while you take on too much physically, then you also exhaust yourself mentally so there's no room/energy to find things interesting. I find it hard to explain, but I used to hate just "sitting" and always had to be doing something. So the whole idea of pacing made me want to scream. Now I can "sit" in a state of peace & calm, and enjoy it (nearly) as much as I used to enjoy rushing about and have become a much calmer & patient person. All the rubbish things have been ditched (ironing, dusting, etc) so what physical energy I have is on pleasurable things. Mind you, took quite a few years to get here so perhaps it's a natural development?
Thanks helixhelix. You are right. I can achieve it sometimes and then my brain fights and off I go again. I always wanted to be the type of person who 'smelt the flowers' and was calm. Unfortunately, it's more like I have ADHD! ( not said lightly- my family swear I'd get a diagnosis!) I also have OCD and 'doing' helps me control it. Or not deal with it But you are right- I will keep trying. Nothing else for it really! X
I feel for you. RA is a challenge and sometimes it's good to go shout frustration out loud. I sometimes tell myself not to be so stupid! Am I treating living with RA like people who don't know me and can't see anything wrong with me? Would I be just as frustrated if I had some visible, physical illness/handicap? In my case I believe the answer is NO. We have to stand back sometimes an take a new look. All the very best my friend.
Don't for moment think that I am different from most of the people with RA. Mine is well controlled and I am in remission. I had an appointment with a bone man about my OA troubles and talking to him I realised that I had started to feel sorry for myself, going back into a "it's not fair" zone, not doing my exercises regularly because some hurt etc. I wish you all the very best and keep in touch.
Ah, the ' why me - it's not fair' Moment! I think most people with chronic pain know it. In my head it's like a toddler having a tantrum ( or one of my teenagers!) Best avoided if you can lol though I think it's v easy to slip in to.
Hi, I'm a Luppy with other stuff including mild RA. I do understand how you feel when you feel like everything you have know and planned feels like it has been taken away. It hasn't. Its still there. It took me a long time to realise and I fought it. I had to give up a career due to brain involvement, pain and fatigue. I was devastated. I was an active mother of four and grandmother. It took me a year to re evaluate what I could do, how to pace to minimise the pain and fatigue what I could replace. I was on high levels of pain killers but once I learnt to pace, rest, and not push I could reduce and strangely began to sleep better .It has taken five years and I do have bad days and lupus crashes but things are different but improved. Please talk on here and to your partner and let them be honest with you. I know my partner needed to be heard.
Thank you for your lovely reply. You are right. I need to find a new way to be and it'll probably mean I get physically better too ( less morphine, more sleep). Thank you. I'm so glad I found this site! X
So sorry you are in so much pain you need morphine- I totally relate to the boredom and saving any energy for when kids get home from school. I am a single parent with a five and 8 yr old and it is so hard- the combination of injecting methotrexate and sulphasalazine is making me so ill but my joints are a bit better. I am dreading the holidays -so sad- we should all be looking forward to having fun together. That's my rant over now. Best of luck, hang in there x
Oh fuse designs, that must be so hard. My four are older- though all have Special Needs so still need a lot of care. Have you got a good support network? X
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x pah. Hope you all woke up in a better state of mind! 
(v bad elbow day....and hands...and patience...>!)
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