Just need a rant sorry, I'm sure many of you will know how I feel. Been off work sick for two weeks, haven't done a full day this week. Got a friend visiting this weekend who I have told about being off sick and who is fully aware of my health, I asked her politely if she would mind coming on Saturday instead of Friday (she was v keen to get here but I know I'll need a rest / time to myself on Fri evening). The response I got was 'are you off out partying or on a date?' 🙄🙄🙄 errrrm I just give up!!
Rant over 🤐
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natal1a
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I know how difficult this can be and how friend and family do forget how this effects us. Why not suggest she come but suggest a onesie night, film and junk food? At least then she can see your not partying without her and she can see you just need some recharge time 💆🏼
Thank you Sami. Yes the original plan was for her to come on Saturday for that exact type of night (pyjamas, film etc) but she has a habit of overstaying haha and invited herself on Friday. Im at work on Friday and am out of the house for nearly 12 hours so would rather just have some chill time by myself on the Fri night but she went into a bit of a sulk assuming I was going out 🙄 it's just hard isn't it when you think people understand but it turns out they don't. Ohhh well 😂
If she's ur friend she should take ur word for it and accept that u are just resting at home on your own not going out. U shouldn't need to explain urself or feel bad it's not fair we are made to feel like we have to explain ourselves all the time as if we don't have enough to deal with! X
Exactly Sara. She's a great friend in many ways but even when she comes over for a night in the talk always turns to how she feels like she should be getting ready to go out etc 🙄 I'm not pandering (is that a word lol?) to her insecurities this time as I have a brain scan today so think I have the right to be a bit stressed!
Yes u need to focus on you and she is lucky to get to spend time with u, it is very hard people don't really get it. I had friends like that years back and it wasn't until one day I actually called one (which I never ever did) to take me to the hospital with a severe migraine she actually realised how bad it was! She was like oh my god u look awful!
Er yes I've not been making it up just to stay in bed all the time!!
Hope scan goes ok is someone going with u?
Have u had a chat with ur friend about ur illness? X
Plus nobody ever really sees me when I'm at my worst because I don't feel well enough to go out! That's why we always look ok when they see us! Because we only go out then X
Yes ive told her about it but she forgets so quickly. Last Christmas we went out for a meal and to see a show (woo hoo a night out) and she laughed at me for saying I was going to wear flat shoes. She persuaded me to wear heels and I was in so much pain, she was just laughing like she didn't understand and I ended up ranting at her about my condition and how it causes joint pain etc. I'm happy for her to come but I'm setting the rules 😊
Yes u have to set the rules sometimes and I'm sure she will understand.
I can't wear heels anymore I'd rather not deal with the pain! I'm either in flip flops or flat boots that's the extent of my shoe collection these days!
I felt really poorly so I ended up asking my friend if we can do something another time. She was fine but haven't heard from her since. Not that I expected to really, despite her knowing I had a brain scan and was stressing about it
But I think a really restful weekend worked for me as I managed my first full day at work in three weeks today woo hoo!
Thank you for asking, hope you had a lovely weekend 😊 x
Oh no that's rubbish u weren't well but good that a rest helped tho.
I had a busy weekend it was my little boys 4th birthday, am totally knackered now tho, I've got a lot of pain in my hands at the mo so that's making me tired and driving me mad!
What sort of work do u do? I only work 2 days a wk now due to my health but on a yrs maternity leave at mo have a 7 month daughter!
Wow Sara hats off to you. It must be so much harder with children. Cute ages though
Hope you are feeling a bit better after your crazy weekend. I'm not going to say hope you managed to get some rest as you probably don't get much
My friend messages yday just to say 'thinking of you' and that was it. It was only because I put a fb status about pain. Oh well. I've managed full days at work so far this week but I must say I'm exhausted now zzzzzzz 😴
Bet you are, its so tough trying to continueto work normally. I haven't been able to work full time for many years now whichever is rubbish. You have to do what u need to in the end tho and just manage the best u can.
Oh well I suppose atleast she aknowledged your messag maybe that's a step in right direction?!
Not a great day today started off having to have a bath just so I can move, just doing that has exhausted me so that's it for me today! I feel done in. Seeing my rheumatologist tomorrow so will see what's next!
It is really weird how people without a chronic illness seem to find it so difficult to get how ill we are. I guess it's because we often look OK and don't broadcast how bad we feel most of the time. I think people without a long term illness expect that we would behave as they do when they have an acute illness, which is to tell everyone about it and for everything to revolve around it until they're better.
I've got a good friend and we've both had a virus recently. She commented on how proactive I am and I said about how I find it important to stay proactive to take my mind off feeling so ill. She responded by asking if the virus had come back in a way that implied that was what I must mean. I had to politely point out that it was the lupus and pituitary tumour that were my main difficulty - crikey I'd love to just have a virus to deal with!
Thank you, yes it's so strange how people you talk to about it just seem to forget. Yet when they've got a cold they want all the sympathy in the world 🙄 I think you're right though. If I'm sat at home and i'm not seeing a particular friend for a while (quite a few of mine live far away), then the last thing I want to text / call about is feeling ill. I'd rather take my mind off it!! But if I'm seeing them, or they're coming to visit etc, I then have to make it clear what I can and can't do, so then maybe it looks like an excuse!
She may have been just having a little joke with you. Lets face it this Lupus is a ***** thing for us to understand let alone others with no money in the game. Good luck. Hope next week is better for you.
Time for frank talk about how she can support you a little by taking her lead from you, I had a friend like this, and we managed to help each other.
She now asks what my batteries are like before suggesting a night out and usually gives my a few options, and I invited her teenage daughter over for some veggie cooking lessons, as she was eating a very poor veggie diet and family were very worried about her.
Other friends have drifted away because I'm too flakey for them, their choice
I have lost all but 3 friends now cos they all don't understand. Most for me calling off eve out or if I have to ask for some help( they say being too needy) the 3 friends I have got say text wen u want to do something as wen I'm well or if I make plans n have to cancel they are fine to do it another day n tell me next day they r free. I've in particular lost 2 friends lately that I and my daughter have known ever since my daughter 1 years n now she's 19 and one of them has health issues herself but can't see or understand mine
She may really not know how bad you feel or what MS dies to you. Give her a break. Call her back and explain that you are not physically able to have her on Friday. You'll have to explain better than just saying you are exhausted. You need time to shut the world off and rest. Being a hostess is not in the cards.
I don't have MS. And to be honest I'm a bit tired of the give her a break attitude. She has seen first hand when I struggle. Yet she chooses to ignore the fact I'm poorly at the moment and when I ask her if she could come on a different day, goes completely in a sulk and is now ignoring me. So, I think I know who needs the break.
Good for u! Nobody gives us a break! A sulky friend is not what u need right now so just do what u need to and see what happens. All u/we can do is explain to people how we feel and it's then up to them.
Try not to worry and just do what u need to do for the moment X
Print it out and give it your friends to read. Those who get it - are worth keeping. The others? Perhaps not so much.
They are being selfish and totally self-centred. OK, I know it is the 20-tens now and not the late 1900s and I'm a dinosaur - but listening to your friends is still important. If they don't care enough about you to 1) believe what you say and 2) take notice when you say it - they aren't worth keeping on your FB list. My daughter (in her mid-30s now) removed a load of contacts last year - and hasn't looked back. It's hard - but sometimes worth it.
I work with lupus myself and I just laugh when people ask me if I'm going out for a drink this weekend. Because I know I will be laid up just recovering from the weeks work and my Meds don't allow me to drink anyway... oh well just gotta realise that unless that person has lived your life, they can never really understand. Just gotta do our best to educate them
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woo hoo! 
You know what no I’m sick of it 🤬
Polymyositis Help please share with me thankyou 
Does anyone else go through times when you don't think there is anything wrong and its all your own doing. need to pull your self together!
I'm having a party n you're all invited!! 
