Anyone feel like a zombie with all the side effects f... - NRAS

NRAS

37,273 members46,139 posts

Anyone feel like a zombie with all the side effects from the less. I feel like my whole life has changed and people don't understand.

nettie4lyfe profile image
14 Replies
Written by
nettie4lyfe profile image
nettie4lyfe
To view profiles and participate in discussions please or .
14 Replies

Hello

Most of the time we seem to take an never ending litany of medications and we suffer the side effects without a whimper, sometimes. I feel after a flare I feel like the living dead as well

You need to understand that most people who do not need to take medications will most probably never understand the contraindications we suffer from. Even the pains we go through can be difficult to explain, without us sounding a bore.

All the best

BOB

Unfortunately people really can't understand this disease. It can't be cured, it won't be fatal. You can't see it. The media imply arthritis is for old people who are wearing out. And we take chemotherapy drugs!

Thank goodness we have this forum full of kindred spirits who really do understand.

Let's hope for a really happy new year for us all, and lots of support for each other!

Nobody is able to understand why we feel like this. When you tell them you're tired, they think a nap will help. It doesn't. The slightest effort is exhausting, then people get cross because you can't do what they expect you to do. Whilst I was having chemotherapy people seemed to expect me to be feeling ill and not being up to 'their standard'. Now that's done and dusted, they forget my other health problems are also causing fatigue and concentration problems. We're in a no win situation, as Bob said if we try to explain, we sound like a bore.

Keep your chin up

Kath xxx

Prairie profile image
Prairie in reply to

That's exactly bob...I've stopped explaining to some people as I start giving myself a headache...sound like a bore....or if some one asks me how I am and I haven't seen them in a while...I will say to them..quite cheeky...How long have you got...hehe...:-)

I had that today - my sister in law who has a bad knee wondered if she had RA - it was not easy to explain to her that RA is much more than sore joints!!!

My Mum was complaining about a sore knee "a touch of arthritis" I recommended Votarol Gel but apparently that did nothing for her [so it's not inflammation then!]. I suggested paracetemol or ibuprofen at regular intervals "oh no" she said " I never need to take more than one ibuprofen to make it go" _ what can you say???? She's in her 80's and has never been ill in her life and doesn't understand why I just don't "pull yourself together" 'nuff said! fortunately she lives at the other end of the country and we're not close so I only see her once every few years!

My sister is the same, fortunately my 3 brothers who I largely brought up, are really empathic and 'get it' having read everything they could when I was diagnosed.

Cece x

Prairie profile image
Prairie

I find when the people who understand and genuinely are listening then I find its okay to chat about my hidden illnesses...the people who ask you how you feel and you kind of know they aren't really understanding or concerned then it's best not to try and give yourself the heartache of explaining...there are those people who lift my spirits...and the others including some family members who drain my energy so I try not to get to involved...as it only makes you feel worse...most days I feel exhausted with everything I have going on...so when people ask me to do things and I know I feel like you say a zombie...I say today I'm having a bad day tomorrow may be a good day so I can't plan...I tell people on the day...then I'm not letting myself down...I think you have to first look after yourself...and try and focus on what you can do...not what you can't do...I keep telling myself...and if people are there for you...then they want to help....if they don't then don't bother yourself....it's a hard enough battle to get through your day...this is why I post on here....as there are a lot of people who understand what we are going through....I always say until someone is living a disease some people will never understand....hope I have helped you....hugs Nicola x

Harpey profile image
Harpey

Hi - If you talk to your GP they can refer you for counseling - sometimes it's good to just be able to talk things through and provide some coping strategies.

I've found the changes this horrible disease has made to my life really hard to deal with - a bit like coping with a bereavement; losing my old self - so I'm going to try to work it through with counseling. I had six sessions through work which helped but I feel I need more especially as the changes are still on-going....

julie_warwick profile image
julie_warwick

I'm new to this too so can't offer much in the way of advice but just to say I feel exactly the same. it's so hard and feel like I'm grieving for my life as it was. had a day of self pity yesterday , not like me at all , just felt so awful. nice to know I'm not alone , lets all hope for better times in 2014 and keep supporting each other x

honeybee13 profile image
honeybee13

This is our world :( (I have learned in a very short while).

A virtual bear hug is coming your way (not toooooo tight though as it would probably hurt!) x

This sight is brilliant for pouring all the c@@! out and everybody here understands :):)

achybreaky profile image
achybreaky

I called my mom yesterday bc I felt so frustrated that I had to do normal errands...go to grocery store etc and again my brain is ready but my body has nothing left. any nobody understands the level of frustration this causes. I just want to be back to my old self. I don't understand how I "got ra??? I just cry sometimes bc I want the old me back....

hatshepsut profile image
hatshepsut

I think that one of the worst things about this wretched disease is that your nearest and dearest do not understand (unless you're very lucky), and expect you to be able to do all the things you used to do.Then there is the guilt because you can't .

And then there's the fatigue.....

Hi . i can really empathise with everyones comments. i`m fortunate to have a supportive and understanding husband, but friends and family have been disappointingly useless! whilst its felt like my life has turned upside down, i guess to them i still look the same, so it cant be all THAT bad can it? On a good day i ignore the annoying comments like `have you tried cod liver oil?` and `ohh i have sore knees too but a bath always helps doesnt it?`. on a bad day i`ve been known to subject folk to a 2 minute tirade about the reality of RA before i flounce off muttering to myself! I used to keep everything to myself and just say `i`m fine` if anyone asked, but now i say how i am. If folk care about you then they wont mind you complaining sometimes or discussing your RA. if they dont really care, then subject them to every boring, gory detail just to annoy them!

Susiej38 profile image
Susiej38

People don't understand- I try not to take it personally. From past experience I have learned to keep explanations brief and not go into detail. It is hard enough trying to accept this disease and how your life is completely turned upside down without having to try and explain it and then realize people don't have any idea what we are dealing with. Most people are uneducated as to what RA is- they confuse it with osteoarthritis. This site has helped me tremendously. Writing thoughts and feelings in a journal helps me, too. I have found books that offer positive thoughts and that has helped me, too. I wish you the very best and want you to know you are not alone- it is so frustrating, but those of us who have RA do understand.

Not what you're looking for?

You may also like...