The darker side of Lupus #3

Is the occasions (& i have had a few), when, whatever you have tried, exercise, eating right, meditation, sleep, screaming, punching something, feeling good the previous day, laughing, meeting friends..................

Your body and brain conspire against you......

You know the feelings.......nausea, anxiety, headache, dizzyness, throat and chest tightness, shaking and most of all the sudden and uncontrollable increase in pain throughout every orifice of you being and you know there and then that today is not only a bad pain day but you are also going to have to fight your mind.....

You start by using the tricks you have learnt over time, deep breathing, meditation, relaxation, soothing music combined with just the right amount of medication that you know should knock it on its side..... you repeat the process a couple of times, the fear, anxiety and panic start to rise - you try stages 2 and 3 in your arsenal, hot showers, cold showers, hot water bottles, cold compresses, sitting still, pacing.....

you keep trying because you know whats coming and the A and E department, paramedics and the feeling of being mis understood, pumped full of extra drugs and failure of not being in control of your own pain does not fill you with the greatest of trust or hope.... so you keep trying until you finally give way to exhaustion - thats when the darkness starts, you have tried to fight it every step of the way but now the real fight starts.....

Not only does your body fight itself but so does your brain....why me, what did i do, i didnt do enough, let me just sleep it will pass, i shouldnt be like this, try harder, breath better, exercise more, eat better, loss weight, gain weight, explain it better......

This stage can last a few minuets, a few hours, all night or for days depending on how strong you are at the time.

There is no right or wrong way of dealing with these days, you just deal with them. It does not make it any easier howevr many you have had or will have, you just have to believe in youself and lupus is very very good at removing that part of you.

I did and do get through them... so will you, with your strength, belief and understanding of your own body and mind. ❤

Thats the darker sude of lupus.

3 Replies

  • Hi Mandy, yet again you make me cry, you write how I feel a lot of the time. Sometimes I feel I am in a box and I can't get out, it's like someone has taped it shut. He walks around me, sits around me, goes to work, goes to football (which I use to love to do) although I have no children, I still have to look after him, wash his clothes, iron them, cook his tea, wash and wipe up, put it all away, go shopping (hate supermarkets) put that all away, pay the bills sort out all the banking, sort all the insurances out when they are due, look after the house, the dog, but I love that bit as she is my only friend right now. What does it take when you are feeling so rough to have a hand with somethings. he's busy, we have a business to run and I do all the admin for it and lately I haven't felt like it but I still do it, luck has it I do it from home.

    I live somewhere in the south in a village and I can stare out my windows and watch my birds in my garden as that is one of my only real pleasures is feeding the birds, Im watching, watching and then swoops in a sparrowhawk and takes one of my collard doves, yes one of mine, they nest in a cherry tree in the middle of the lawn and for three years now they have all stayed, we nearly lost a baby to a magpie, but I saved it and my taxi driver took it to the bird man and she survived, but the sparrowhawk then took the dove behind the verbinam and I couldnt save it, I managed to save a male blackbird and he comes for his raisins every day when I whistle, bit I fear that every day, how strange with all that I have going on and it worries me greatly that the sparrowhawk will get a good feed courtesy of my pleasure in feeding them.

    You don't know how much your post means to me Mandy, I do really feel you understand how all of us on this forum are feeling day in day out and there is no escape from any of it.

    On a brighter note, I am going onto the PLAQUENIL again after suffering with the QUINORIC for too long, so I hope they will help as they did first time around and then maybe I can get back to my beloveded football and walking my dog every day at lunchtime. Can't wait for it to be a bit warmer, but not hot.

    Don't know it you are the age where you take HRT I have stopped it after reading info about heart problems and they run in my family, although I do think it helped I am worried about starting it again.

    Take care love and hugs go to you. noonoo xxx

  • I am so so sorry you are feeling such worry, anxiety and fear. I can empathise, my ex couldnt cope, left me with an 11 year old and decided to go bankrupt, hence leaving me with the bills.....I no longer hate or resent him, he was very afraid and instead of facing it with me he ran. He did not understand and i think our partners, hubbys, wives, friends etc all struggle to understand our pain, fear and worries over how to cope and deal with this xxxxx illness.

    Thats why this forum is the one place where you can let rip with your feelings without the fear of being judged.

    It has taken me 20 years to pluck up the courage to speak and write the way I do now.

    You are loved, lovable and loving (one of my many mantras)

    With every step and breath you take you grow stronger and it grows weaker.


    Take time for u, a few minutes, to enjoy whats around you. The sparrowhawk (1) is Lupus, the birds (many) are you, remember the many are stronger than the one.

    May the universe grant you the strength you need for today, tomorrow and many days to come. ❤x

  • Hi Mandy, thank you sweetheart, don't get me wrong when I have my Migraines he's ace, he comes home from work to look after the dog as she is too young to understand, my last two dogs which I lost 6 weeks apart I only had to say mummy is poorly girls and she is going to bed, they went into their chairs and off to sleep, they new. my mother says it's because he can't see it, I walk with a gait no stick yet, he can't see the pains I have everywhere, she said I should sit down and tell him and talk to him but even if I didn't have these issues you would hope that your man would do it because he wants to.

    That's so very hard on you that your husband should run from what is also his responsibility with a Child, I just assume that like a lot of men he was weak. I wouldn't say mine is weak just lazy, daft thing is he would do anything for anyone else. He did have a bad childhood and his mother made him do some pretty wrotten things and I think that place a part in it all. I think things may have been different if we had children, now grandchildren but after 3 miscarriages and the ectopic it was not to be. Hence dogs for 29 years.

    Take care lovely Mandy ❤️🐶😇

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