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I’m aright, to be just alright, right?

  • Thread starter GingerNotWhinger
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GingerNotWhinger

New member
Joined
May 2, 2021
Messages
2
Location
Manchester
As a woman determined to pass every test, to ensure I always get the positive result, when I tested positive for Covid 19 it was no shock. Don’t get me wrong as a family we were obsessed with keeping it at bay, but as a secondary school teacher where the kids practically lick each other I was pretty sure ’our Rona’ would be knocking on for me soon enough.
so last year I tested positive for Covid 19. This hit me with a super force, it has been a 7 month battle and the dark times were more frightening than I wish to go into. In this my doctor tested my blood and lupus came into the equation.

My family and I were startled by this list of ailments and symptoms of lupus which before 2 days ago I’d never known. I ticked every box and had experienced almost everything in the last 20 years, I’d ignored some, thought some to be bad luck,been given wrong diagnoses for others and some I thought were how everyone feels (I am a real tough cookie honestly)
Throughout this I’ve had some great care and have had pulmonary rehab, speech therapy and physio, all of which have helped to build me up a little and build a picture. But I am currently Plateauing at feeling pretty rubbish, every joint hurts, my teeth and I feel like someone has taken out every organ blown it up and shoved them back in, I hurt, I ache and it feels like I’ve elastic band round me restricting my breathing as I just have no room for a big breath, I’m unable at times to get air. It scary, and I hide the fear and pain from everyone as I think I’ll look weak.

So lupus gets thrown in among long Covid and I described it to my husband like this... each symptom/ailment is an instrument playing, for 20& years they’ve come and played solo, we’ve even at times had duets, trios and a quartet, but right now the whole orchestra is playing and they’ve invited their friends long Covid who are the local brass band! It’s deafening .
This is all new to me, it’s overwhelming, relief in some ways that this may not be “ the new me” when I’m on the correct pathway. But does anyone feel this way or have felt this way? Is this normal?
and is it ok to flit from feeling that the glass is half full, to thinking it’s a sodding pile of sand? to be angry when you do go out and Karen is giving you the ‘look’, I was fine till you stared love, till I almost tripped over your cocker spaniel and had a coughing fit. Yes my mobility is shit, but so are your shoes so sod off and leave me be! Is it fine to say ‘I’m fine’ when I wanna say ‘oh feck off will you’ Your positive vibes are doing well getting to me, I didn’t give you me address dear colleague as you are just that, hence the vibes via email as I never passed on my digits.
it’s alright, to be just alright someday? Am I right?
 
2

2Much2Feel

Well-known member
Joined
Apr 24, 2021
Messages
1,223
Location
US
As a woman determined to pass every test, to ensure I always get the positive result, when I tested positive for Covid 19 it was no shock. Don’t get me wrong as a family we were obsessed with keeping it at bay, but as a secondary school teacher where the kids practically lick each other I was pretty sure ’our Rona’ would be knocking on for me soon enough.
so last year I tested positive for Covid 19. This hit me with a super force, it has been a 7 month battle and the dark times were more frightening than I wish to go into. In this my doctor tested my blood and lupus came into the equation.

My family and I were startled by this list of ailments and symptoms of lupus which before 2 days ago I’d never known. I ticked every box and had experienced almost everything in the last 20 years, I’d ignored some, thought some to be bad luck,been given wrong diagnoses for others and some I thought were how everyone feels (I am a real tough cookie honestly)
Throughout this I’ve had some great care and have had pulmonary rehab, speech therapy and physio, all of which have helped to build me up a little and build a picture. But I am currently Plateauing at feeling pretty rubbish, every joint hurts, my teeth and I feel like someone has taken out every organ blown it up and shoved them back in, I hurt, I ache and it feels like I’ve elastic band round me restricting my breathing as I just have no room for a big breath, I’m unable at times to get air. It scary, and I hide the fear and pain from everyone as I think I’ll look weak.

So lupus gets thrown in among long Covid and I described it to my husband like this... each symptom/ailment is an instrument playing, for 20& years they’ve come and played solo, we’ve even at times had duets, trios and a quartet, but right now the whole orchestra is playing and they’ve invited their friends long Covid who are the local brass band! It’s deafening .
This is all new to me, it’s overwhelming, relief in some ways that this may not be “ the new me” when I’m on the correct pathway. But does anyone feel this way or have felt this way? Is this normal?
and is it ok to flit from feeling that the glass is half full, to thinking it’s a sodding pile of sand? to be angry when you do go out and Karen is giving you the ‘look’, I was fine till you stared love, till I almost tripped over your cocker spaniel and had a coughing fit. Yes my mobility is shit, but so are your shoes so sod off and leave me be! Is it fine to say ‘I’m fine’ when I wanna say ‘oh feck off will you’ Your positive vibes are doing well getting to me, I didn’t give you me address dear colleague as you are just that, hence the vibes via email as I never passed on my digits.
it’s alright, to be just alright someday? Am I right?
God, Ginger, I'm sorry you've gone through all this. It's def more than alright to have your feelings, and those expressed here are more than understandable as well. I'm 50 now and I am not comparing my ailments to yours, as yours sound unforgiving at the moment, but I've always been the one amongst my family to get sick, have some random health issue no one else has had to deal with, this and that piling up over the decades, and always the One in in the "one in 1.2 million have X reaction" to anything. So yeah, it's felt exactly as you expressed, both with how you have dealt or not dealt with symptoms over the years ("everyone feels this") as well as how you so eloquently put the orchestra.

I got severe mono when I first went to college, on bedrest for. months, and never really recovered completely from it. Been diagnosed with chronic fatigue syndrome more times than I can count, but it doesn't do me much good, as there's no treatment for it. I also believe it strongly amplified my already depressed nature, bring on my severe depression and its many issues. I could go on and on with my surgeries over the years, but now I tell doctors "Some people go on a diet, I get an organ taken out" when they ask how I stay in shape. It's ridiculous. And it's exhausting. And yours sounds far more severe, obviously. It wears on you, makes you feel bad about yourself for not being able to do what everyone else is up to, no one understands or fully "believes" it, etc., and anger comes out a lot. I do OK some days, but it wears on me.

Sorry--don't want this post to go on forever (like my chart...) so I'll leave it at that and hope you find good advice here, that you feel like you can vent whenever you want to, day or night, and that you don't feel alone. As time goes by, likely more people will be able to understand the covid stuff; I really hope you feel better physically as well. Keep talking here, it helps.
 
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GingerNotWhinger

New member
Joined
May 2, 2021
Messages
2
Location
Manchester
I actually don’t feel “depressed”, health care workers are pushing on me seeking help, I don’t feel I need it, there are just days, actually normally just hours when I feel a bit low, a bit shit, a bit like I’d like to kick shit out of something if I had the strength. And I read about spoon theories and it makes me want to shove spoons up my own nostrils and gouge out my eye balls, I don’t want cocking spoons, I want energy again. I want to feel amazing- immortal, the best Mum, loving and super sassy wife, the greatest Nanny and the warm but crazy teacher.
im not depressed I’m just fed up I guess. I know I should be thankful, some people haven’t been so lucky!
I want all these ailments to bugger off, if karmas is a thing this should be ricocheting around certain wings in strange ways (prison) I want my brain back, I want to be able to answer my grandaughter when she asks “what’s a boy chicken Nanny” the word just not forming, seeing it there in my minds eye with its neck like an old scrotum, dangling, teasing me all smug. Looking to my dad with tears in my eyes and him saying “cock”, unsure if it was an insult I had an answer for my grand baby but I want my words back and my mobility, I want to breath full breaths and sing louder than the orchestra x
 

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