Having to take everyday as it comes!!

Im really struggling with the fact that everyday is so different , actually every hour it seems like at the moment . Im recently diagnosed and im well aware that getting my drugs combo right is the focus , but just cant make any plans as I dont know how im going to feel .the chronic fatigue is for me the worse symptom I cant cope with everything else because of it and its hard to describe how tired I am to my family , I dont think they get it . Xxx

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  • Its not a good place to be is it. NRAS are doing a research survey on fatigue, so maybe the shared experience will help. I've always just about got through with planning and pacing. Its the up and down of things that our nearest and ?dearest seem to find hard to cope with. I hope you get rest but also manage to do something. When I was first diagnosed I used to aim to do one thing a day - meaning one main thing.

  • Thanks for you encouraging words cathie , im trying that philosophy of doing one important thing a day . Hopefully things will settle , hope you feeling okay xx

  • We can all empathise. Take comfort in the fact that we've all been there when we were first diagnosed. Once you find the meds that suit you it'll be so much better, most of us needed to chop & change in the early days. It's also getting used to a change of lifestyle and listening to your body. Fatigue, unless you're really unlucky, doesn't ease unless you rest & if you don't everything gets out of proportion. Don't feel guilty about going for a lie down when it gets too much. You may find once you get into a routine you'll have specific days when you know you'll be rubbish & plan around those days .As for your family, remember it's all new to them too. Hopefully they'll soon start to see when things are getting too much.

    Take care & rest up & hope it eases soon.

  • Hi there traceby, Once you have your medication sorted you may begin to see some ray of light at the end of this tunnel we are in, Know as RA. I often wish someone would let me off the train lol. I know its hard but try not to put your life on hold don't let it take hold and rule your life. Plans can be changed or put on hold as you encounter them. And as for our nearest and dearest they will never understand it fully and we cant expect them to, if we think logically I mean its hard to understand it as a sufferer one day you can feel good then next a different person. I often say I think someone stole my body in the night and left theirs lol. xxxx I wish you well xxxxxxxxxx

  • Hi traceby,

    Sorry to hear you are feeling so bad. Everything everyone has already said is really useful. If you do need to talk more about this please feel free to ring the helpline on 0800 298 7650 We are closed over the easter break but open again on Tuesday. Our normal hours are Monday - Friday 9.30 am - 4.30 pm.

    Regards

    Beverley (NRAS Helpline)

  • Hi Traceby, I always say someone starched my body in the night as I wake up so seized up!! It is so bewildering and frustrating and upsetting at first coming to terms with changes you have to make and being stopped in your tracks but with the right meds working for you, very soon you will get back on track. Compromises and changes may have to be made .. I had to give up full time work but took on a voluntary position and also did a P/T Bachelors and a Masters in Fine Art and Printmaking, so your mind starts to think .. now I don't/can't do this any more .. what else CAN I do? You become very astute at planning and yes, things do have to be put on hold for a while if the body can't manage a hectic holiday or schedule but you learn to have plan B, C & D ready ;-) However, i know it has been hard to miss out on concerts and theatre during flare ups etc. I have got very bad mobility at the mo awaiting a new med to work, but my husband understands this and we make shorter trips out when I can get out, and enjoy those just as much and then not so much disappointment if the full day out etc doesn't happen at the mo. Hope you are soon feeling better and can make some adjustments to suit you and make you happy too. Love Julie x

  • Hi Traceby, I can relate to all you have said! If I make plans with anyone, I always say, if I feel ok. I only know minutes before I need to go. I guess I have become spontaneous. If I don't set my alarm for five different times in the morning, I would sleep the day away. Yes, people say they understand, but they don't really get it. The only one that gets it is my brother. His wife of 20 years has lupas. He helps me in so many ways. Without him I don't know where I'd be. I have had the RA and fibromyalgia for less than 2 years, and treatment about a year and a half. I hope you start feeling better, your not alone! I'm sending you a gentle warm hug xx

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