Fed up not being to do more: Here we are another... - NRAS

NRAS

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Fed up not being to do more

sylvi profile image
8 Replies

Here we are another hospital visit over and i am being told i'm doing too much. I'm also been told i'm as good as i'm ever going to be. Does that mean i'm to sit and watch the world go by? I get up and do anything even for 5mins i have to sit down for 10mins. I'm am so fed up with this disease, People look at me and i don't look like like a lady who has a serious disease, like a lot of you people on this blog. My body doesn't like the cold and it doesn't like the extreme heat either. I can't win. There are times when its hard to be optmistic, which i try to do. My way of coping has always been not to give in to this bl***y disease, but since last August when i had my ligaments stitched backed it's been very hard. Now i've had a moan, i hope everyone on here are well and a happy easter to all.

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sylvi
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8 Replies

You do have to moan at times because the day to day pain and fatigue are really hard. No one has a magic crystal ball and you dont know how you will feel in the future. We are all individuals trying to improve our feelings of wellness however we can, dont give up medics dont have all the answers. I really hope you feel a bit better soon. Dont worry about moaning i think most of us here would/do understand as we are all human and inevitably do it ourselves.

I did the garden on thursday cos the sun was shining. And today I had to see Seadoc for emergency stronger painkillers because every joint in my body feels like its been steamrollered. Never mind the sun is shining and i genuinely do count my blessings in life Ive been unlucky to get RA but lucky enough to have good home support which i dont take for granted.

Much love, understanding and health to you this Easter

Fiona

know what you are feeling dont like cold or extreme heat either feeling really lousy today apart from some washing and cooking spent day exhauseted in pain on bed.., things can suely only get better i had a good 7/8 months on metho before having problems.. latest treatment gold.. hasnt had time to work yet!!. wish you all well or as well as we all can be# alison x

Hi Sylvi, please don't give in I know its hard as I've been there many times, up and down. Have a few good months and feel great and think yes its under control, only to be knocked down further with another flare.

Unfortunately that's the way the disease runs, but there are many more drugs available now compared to many years ago so don't despair.

Don't give in but don't fight it either, you will never win. I would think that way, fight this dreaded disease but it would just knock me further into the ground because that's what it does.

You will get there, I know as I am proof, after 17 yrs and 11 ops, I'm still here and probably stronger now than I have ever been.

Take care

mand xx

sylvi profile image
sylvi

thanks everyone. Its not a nice feeling being in pain, but hey weathermen say its going to rain tomorrow.xxx

Hi Sylvi

You have a good moan gal. It gets it off your chest and end result. you should start to feel more in control. The pain is the worst isn;t it? That pain in the middle of the night, when everyone else can sleep and you can;t even get comfy in bed and you have to get up and nurse a painful bit with a lump of ice or a hot water bottle. I used to hate the long dry hot days, but I have to say these last few days haven't been as bad as usual, and so I am hoping that the meds are doing the trick....

Keep posting, we will always listen. Look after yourself and have a good Easter too x

Julie x

Hi Sylvi,

Moan away - it's always better out than in :-)

I totally empathise with your pain, fatigue and frustration and wish I knew the best way to make it feel better. Sadly all I can do is agree with all the great advice above.

Wishing you a lovely Easter too xxx

sylvi profile image
sylvi

Thank you everyone, its nice to know that i'm not in this alone. I'm lucky in the fact i've got a brilliant husband who does an awful lot for me, but sadly he can't do anything about the pain. He tells me off when i try to do too much. My best time of the day is in the morning, after that i'm useless and in a lot of pain. The pain relief only eases it,it doesn't take it away. I've been supplied with a scooter from saafa charity. because my hubby is ex military, so if any of you have husbands or partners who served saafa will help. I'm very grateful to them as i now own a reiable means of transport that will go in the car. At least i can get up the village on my own now, thank goodness. I hope everyone has a lovely easter, Sylvi. XXX

happy easter

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