Pain free and enjoying the moment: Hi my fellow... - LUPUS UK


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Pain free and enjoying the moment


Hi my fellow lupies! I am a lupie newbe, although like most lupies I have been suffering for many many years.

It's 4.45 am and I am wide awake and pain free, Something that does not happen often, so when it does I want to enjoy it, sadly, none of my friends and family are awake at this time so I have no one else to share this moment with.

Recently I was trying to explain my condition and pain to a friend, who had no real understanding of the total fatigue and pain for us lupies. I have SLE, myosotis and NSIP, things are pretty tough right now, lots of meds and not able to work.

After a particularly bad day I wrote this and posted it on my Facebook, the response was overwhelming! I have been telling people how unwell I am for years and yet with one poem they all understood.

My heart is squeezed, my throat swollen and tears roll down my face,

the sound of sobbing has drown out my thoughts. I cant breath.

This twisted knot of pain lays deeply rooted in the pit of my stomach, it's shoots spreading to every muscle in my body.

Kill the pain and daydream all day, missing life as it passes by,

I keep telling myself get up and fight for your wonderful life, you know you have Lupus,

Truth is, today Lupus has hold of me...

I am good right now, and wish all of you the best day you can have today!


Sent from my iPhone

Sent from my iPhone

9 Replies

Hi BaileyD

That is a very descriptive poem and puts the way lupus can make some people feel into words to get others to understand it very well.

I am glad that you are good right now, that makes two of us as I won't let lupus get hold of me it already put me in hospital for part of December, all of the festive season and most of January. It was not the first time either as I am sure you can understand. I have had it for about twenty years so know only too well how you were feeling when you put pen to paper and came up with that poem. I am not surprised you got an overwhelming result on Facebook it is great, well done you.

Keep on the upward road

Madmagz. :-)

BaileyD in reply to madmagz

Hi Madmagz,

I feel a kindred spirit with many people on here, and I too had a very difficult time over December and the New Year, not the start to the future I had hoped for. I fully understand your connection to the words. You are absolutely right, onwards and upwards and thank you very much for taking the time to read my blog and posting a message.

The good days are good, the bad days are bad and somewhere in between is the life we live!

Dawn xxx

madmagz in reply to BaileyD

Hi Dawn

I know just what you mean when you say you feel a kindred spirit with people on here - it is one place we can let off steam and really be understood and not get the familiar tuts of "Oh no she's off again!" You will probably see my name pop up on her quite a bit. :-)

Indeed onwards and upwards - and yes I certainly make the most of the good days -and nights........ like celebrating Christmas and new year in March once I was feeling a bit better my friends made sure I was having a very good evening I'm normally teetotal but on this particular night I was just throwing a shot down my neck and had a bottle of cider in my other hand and noticed my G.P. standing in the pub at the bar!!! :-o He said "That's it enjoy yourself you've had a rough couple of years." I'm so glad I have an understanding doctor.

Your last sentence sums things up perfectly. :-)

Madmagz x

Fantastic! xx

Thank you for reading my words, they were as painful to write as they are to read and I really appreciate your response.

Dawn xxx

I love the line the twisted knot of pain in the I was unable to sleep last night it was this feeling entirely that I had but I have never been able to describe it. It also goes to your chest/rib cage/neck etc. I too have lupus myositis and haven't talked to anyone with the myositis part nice to meet you:) xx

mstr in reply to mstr

PS Bailey...I'm a member of the Sheffield Lupus Group if you ever make it there. x

BaileyD in reply to mstr

Hi mstr,

Gosh, I haven't met anyone yet with Lupus and Myositis, I really hope you are feeling a little better as the day has progressed any understand exactly what you are describing. I am on a very steep learning curve as I have only this year been diagnosed with Lupus, Myositis and NSIP. If you have any info or want to share your experiences, please keep in touch.

I did want to come to the Sheffield Lupus Group meeting, but it was difficult for me to get to the hotel location owing to my physical condition. I hope to go in the future. Thank you for taking the time to read my blog and hopefully we will meet at the group soon!

Dawn xxx

mstr in reply to BaileyD

Dawn, thanks for this. I plan to send you a pm on this sight, rather than ruining your blog post. I too have only just been diagnosed in January this year though I have had symptoms for almost 2 years. It is also hard at times to decipher the lupus from the myositis - but I think it is the lupus that is causing the myositis. Will email you later and yes it would be great if you can make the Sheffield Group. The tram line is 50 metres from the hotel so fairly easy to get to. We go to Meadowhall and get the tram right to near where the hotel is. For the next group if you want to meet us at Meadowhall park and ride we would be happy for you to come with us as there will be a few meeting up at Meadowhall. xx

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