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Gosh I’m not really sure how to say this without sounding ungrateful but I need to get it off my chest and maybe someone will understand where I’m coming from.......
I’ve only been formally dx for a month and feel like I have been hit by a ton of bricks as I can’t get my head round the fact I have this illness and the seriousness off it-I keep wanting to cry and feel abit apart from the ‘normal’ world, unable to relate to ‘normality’.
Lupus has really restricted my life and due to not being dx properly by the first consultant – (he discharged me with a helpline number as he felt everything was under control!!!! Even though I was in such pain and so fatigued I’d had to cut my hours at work significantly and move back home to my parents at 29). The disease therefore has progressed to beyond joint pain and fatigue as I tired to ignore it and continue on.
I have just been put on CellCept after a sort course of steroids as I am having liver/kidneys problems. Cellcept is making me feel sickly and headachy though it is getting easier.
Anyway my point is I have some fantastic friends but I am getting increasingly (and perhaps irrationally due to me over emotional state) irritated when certain people. I’m not the sort to easily admit I’m not coping and do tend to soldier on and put a brave face on it but recently I have not been strong enough to do that so am a bit fed up with trying to arrange to meet for a coffee or chat with certain friends who say-‘we are here for you…just let us know what we can do’ only to be told-‘can we leave it till next week I’ve not got much done in the house this week’ or ‘that’s no good for me but tell you what we’ll have a trip out when your feeling better’. I fell like screaming but I CANT COPE NOW AND NEED SOME HELP PLS JUST SPEND A BIT OF TIME WITH ME!!
Am I losing all perspective here?
Thanks
Rachel
I’ve only been formally dx for a month and feel like I have been hit by a ton of bricks as I can’t get my head round the fact I have this illness and the seriousness off it-I keep wanting to cry and feel abit apart from the ‘normal’ world, unable to relate to ‘normality’.
Lupus has really restricted my life and due to not being dx properly by the first consultant – (he discharged me with a helpline number as he felt everything was under control!!!! Even though I was in such pain and so fatigued I’d had to cut my hours at work significantly and move back home to my parents at 29). The disease therefore has progressed to beyond joint pain and fatigue as I tired to ignore it and continue on.
I have just been put on CellCept after a sort course of steroids as I am having liver/kidneys problems. Cellcept is making me feel sickly and headachy though it is getting easier.
Anyway my point is I have some fantastic friends but I am getting increasingly (and perhaps irrationally due to me over emotional state) irritated when certain people. I’m not the sort to easily admit I’m not coping and do tend to soldier on and put a brave face on it but recently I have not been strong enough to do that so am a bit fed up with trying to arrange to meet for a coffee or chat with certain friends who say-‘we are here for you…just let us know what we can do’ only to be told-‘can we leave it till next week I’ve not got much done in the house this week’ or ‘that’s no good for me but tell you what we’ll have a trip out when your feeling better’. I fell like screaming but I CANT COPE NOW AND NEED SOME HELP PLS JUST SPEND A BIT OF TIME WITH ME!!
Am I losing all perspective here?
Thanks
Rachel