Completely lost my mojo: Everything feels like an... - NRAS

NRAS

36,580 members45,192 posts

Completely lost my mojo

Mhairi54 profile image
13 Replies

Everything feels like an effort at the moment. Really struggling to motivate myself to do anything, especially after my back spasm last week. Feel as though I've taken a big step back, emotionally as well as physically. My husband keeps telling me that if I think positively, everything else will work itself out.... Facebook makes me feel worse, feels as though the whole world is out there having a great time, which makes me feel worse! Sorry for the moan, just needed to vent.

Written by
Mhairi54 profile image
Mhairi54
To view profiles and participate in discussions please or .
13 Replies

Hello there

Quit with the Facebook! It's all an illusion anyhow. Folks rarely stick pictures of unhappy times on social media. I gave up with Facebook ages ago, because it got on my wick...seriously!

It may look like the whole world is having a wonderful time, but they're not.

Sorry that you feel rough, it's no joke is it? I'm struggling with a lack of energy, and depression. I have PsA, and it's early days in terms of treatment. I find the following helpful..

Walking. I take my dog out every day. I find walking lifts my mood. I like to vary the walks, and often plan the walk so there is a nice coffee shop or pub at the end! I go out even when I feel like hell (most days atm!).

Talk to someone every day. Walking with a dog has the advantage that folks tend to talk to me. They like the dog (I'm just the moron on the other end of the lead!) Nevertheless, talking to other people lifts my mood.

I find alternating pain relief helps, and never allow myself to get to the stage of agonising pain before taking something. I always take pain relief before exercise.

Good sleep hygiene is a must with me. I find if I go to bed late I feel like cack the next day. Thinking positively is hard when you feel like hell, I often don't feel positively at all, in fact often I feel flipping furious! However, I've learned that I feel worse if I stop doing the things I've mentioned. These might not help you, but there may be other things that might.

Sorry, my waffling on is probably about as much use as a chocolate spanner! I mean well😳

Feel better soon.

Mhairi54 profile image
Mhairi54 in reply to

Good advice, thank you. Think I may come off Facebook for a while.

popsmith1874 profile image
popsmith1874

Hi Mhari sorry that things are not to good at the moment, maybe give the helpline a ring and they be able to help and also your Rheumy a ring or their helpline if they have one and tell them how things are , I know how you feel I'm on Benepali and mtx since July and was doing really well but my hands have blown up again and I'm getting a bit off pain back and am a bit worried this Benepali stopped working but I was at my specialist nurse before Christmas and she said it could take up to 6 months for the Benapali to work properly but I have my doubts as you well know we know our own bodies and can tell when something's not right.i hope you get sorted out and if you need a friendly chat we are always here on this forum to help each other xxx😇

Mhairi54 profile image
Mhairi54 in reply to popsmith1874

Thank you. Have never rung the NRAS helpline but maybe I should. Just so frustrated. Would give anything to get my old life back at the moment. The Benepali had really started to make a difference for me, even in that short period that I've taken it. So to be set back by the back spasm has been really hard to take. Was going to try going back to zumba next week but have my doubts now whether or not I'll manage it. Everyone is so kind on here. As much as they try, it's a really hard thing for friends and family to get their head round, particularly the invisible effects of the illness. Really helpful to be able to post on this site and get support from people who know exactly what it feels like. x

Philip profile image
Philip

If only lol, it can take more than a quick smile, where did he qualify as a medicine man, lol, someone who has this type of illness and many many more can themselves bring a depression on and it will take more than a pill. I too have depression from my many illnesses including Dementia, but it's me who keeps the antidepressant smiling and the sleeping pill wide awake lol, I also phone Samaritans when I'm feeling crap and just talking to someone probably as daft as me lol helps and it's free lol tell:116123 they don't know who you are or where your from and it's great just to talk to someone who isn't going to judge me, gives me a lift too. We all go through this stuff now and then. You can pm me if you want more info.

Mhairi54 profile image
Mhairi54 in reply to Philip

Thank you.

I rarely go on Facebook anymore. It's hard to communicate to friends that I can't make this or that event because I don't know if my hands will work then. Everytime I log on to Facebook, friends ask me if I am cured yet, and if not then they tell me what helped their nieghbour. Sometimes I don't want to talk about RA. I only use Facebook to communicate with family in the US , Australia & Canada.

Cynthialcj profile image
Cynthialcj

I'm sorry for you , but I cry daily, I hate it and miss my life..the world and my friends just left me behind..I can't work and hobbies are alot on me. But I push..I'm hoping for pain relief. My biggest problem is nausea , so I been on a,few ra meds. I am positive , and I say I don't need to be told it. It is ok to feel broken and cry . It's the worst thing to take away from me , my happy life. And going threw years of med not working but only making me sick isn't fun. Imy just adjusting to new way of lifeatures and found friends that have RA also so we do get out. ...I wish you luck..when your in pain q,day . It's draining

Mhairi54 profile image
Mhairi54 in reply to Cynthialcj

That sounds awful for you. It's at times like this that you need your friends support the most. Hope they find the right meds for you soon and that the nausea goes away, there's nothing worse. Take care.

Cynthialcj profile image
Cynthialcj

Thank you. Same to you

Nickijk73 profile image
Nickijk73

Hi,I agree with all of the above about staying off of social media - for my true friends I have their contact details and will speak to them directly if I need to,and vice versa. As a lot of people have said,I found it all to be one upmanship on there - nothing ever seemed real,unless you wanted to just keep seeing pictures of people throwing up when drunk or other daft things,and I found I had enough to deal with without that making me annoyed(?!)too!!people couldn't understand it when I first deleted my account,but like I told them,it ended up being more of a nervous twitch when you're not working,as you can access it from your phone so you find yourself almost instantaneously checking without even realising it.... a bit like a tick is the only way I can describe it..... and after a couple of days of realising I wasn't missing anything,my mood picked up no end 😊

I also used to feel like it was one step forward and three steps back,until after several failed drug cocktails,they finally found the one that worked for me,and now,I take my meds in the morning,usually with a shortbread(or two) if I haven't got up,something stodgy for the meds to cling to,and then wait for an hour or so before dragging myself out of bed - it definitely makes all the difference in how I feel for the morning ahead.

I had my first dog walk yesterday - it took longer to wrap the pair of us up than we were actually out for(about 1/2 hr at most) and then about an hours drive to the shops on the way home after,and it left us both completely dead on our feet - Minnie's had bursts of energy on and off all day,yesterday all she could do was sleep,but I've been completely worn out by the experience,as it's the first real exercise of any sort in over 2 years,and I've been that bad that I was asleep by 6 tonight.... hence me now being awake!! 😝 No doubt that'll be my sleep patterns ruined for another week or so again.... oh well,who needs sleep,eh?! 💤😩

Here's wishing you well xx

Phoo2 profile image
Phoo2

Gave up on Facebook updates a while ago......

hmmm today sore wrist and shoulders .....

next day....can't walk properly....

day after......can't make a cup of tea!!!!! Ha!!

Unfortunately people who don't suffer with a chronic illness just don't understand and we cant live the same kind of life......stick with your friends, family and this website........Facebook is kinda fake anyway.....

Melslex profile image
Melslex

I've been dealing with arthritis since I was a child. I can't tell you how many times my mom or my husband has said think positive or get up and stay active. Try this food or that food etc. When I'm in pain I Don't want to hear that crap. I just want to rip someone's head off when its severe. Its so nerve racking. I've lost 7 pounds and I'm still trying to lose more so my back and knees won't hurt so bad. Its day by day for me.

You may also like...

Feeling a bit lost and apprehensive

waking up with stiff and sore hands and feet, especially the fingers and toes, the stiffness seems...

I have lost the me I was.

hurt that day. I am depressed and feel so alone. I have a great husband of 36 years but he doesn't...

Officially lost it!

much like swimming as it hurts my back and cold water makes everything seize up but ought to at...

Feel a bit on my own with this

Should I go back to GP or just get on with it. I also get a temp and feel unwell when it gets...

Feeling lost

silence to any comment I make about this awful illness, as if I am just a big whiner. I now try my...