The darker side of lupus #10

Is when you know you are in for a bad day.....why?.....because you had a good day the day before, when the pain was so under control you were able to achieve something - a stroll, nails, hair, shopping, you know, all the things 'normal' people do.

The problem with a good day - is the general, rule of thumb, that inevitably a bad day will follow....and then it starts....

Nausea, sickness, diarrhoea, vertigo, leg shaking but mostly pain.....

Pain from orifaces you forgot exsisted within the releams of your own body.

Your only comfortable position is a little known karma sutra position which, if wasnt so funny would certainly cause concern with your

You curl up into the fetal position and cry and scream silently into a pillow, cause you know that no one can do or say anything to make you feel better.You know it will pass, the question that always occurs is........'how long this time' - 'how much damage this time'


the chest pain, (Costrochronditis, in my case), is so severe you honestly feel that your heart will explode, pins and needles, numbness, headache, blurred vision...


You try all your arsonal of tricks to keep you from calling for help, relaxation, meditation, gentle exercise, sleep, colouring - the last thing you want is the humiliating trip to a black watch a and e department, where the care givers sigh in exasperation because its you again, although your last trip in was 3 months ago (yes, despite daily attacks, I avoid the local a and e, the stress and fear alone is enough to keep the devil at bay....)  ... this has happened!!!!

Thats when the pretence sets in, you've all done it, you convince yourself that the pain and trauma is not that bad, dosent warrent an ambulance and anyway, they are always so pushed and busy, always on black watch and you are constantly reminded how much each call out costs...last time i was informed it was 250.00 pounds.

So you pretend, pretend that the stomach cramps that have you doubled in pain and constantly on the loo, is something you ate, pretend that the crushing feeling in your chest, heart and ribs is nothing more than indigestion, rather than the serious Costrochronditis you suffer every day, pretend that the verigo, loss of vision and buzzing in your ear is nothing more that lupus playing smile, send happy texts, avoid the phone so no one can see you crying with pain or hear you scream as the next suffocating cramp sets in..... thats when the morphine bottle you keep for emergancies begins to smile broadly at you,  you can hear it rattling in the safe cupboard.......but as a transplant patient you suffice with the oxy codine, (in the proper measured amounts and alloted time frame) because the morphine will damage your one and only, 50% only working, transplanted you carry on pretending......

when all you really want is for the pain to stop, for someone to say 'its all going to be ok' 'it will be better soon'

All I want is a rest, a rest from the constant pain, the fear of not knowing what I am going to deal with in the next 30 minutes, a rest from having to explain what I have and how it effects me.

I asked my dr once to induce a coma, just long enough to rest my body and brain, maybe it will re boot itself or re wire itself.... he thought I was joking......maybe I will look more closely at the invite to lupus Americas' offer of a course of stem cell treatment at 10,000 a pop....because there is only so much you can deal with......

After 20 years... I am tired......I know you all are too... tired of having to fight..... just tired.....

So you just accept that once again you are fighting a bad day and you ask the universe to be gentle, let it pass quickly, without any further damage. You beg the universe to give you the strength to get through the next  5 mins, an hour, a day, a week......however long its going to last and you promise yourself that the next attack will be easier, it has to be easier because you are not sure how you will get through it otherwise..... but you do and you hope the next good day comes soon.

May your universe give you strength and courage to face each bad day, safe in the knowledge that a good day is around the corner.

Love, hugs and hands of strength to all lupies, everywhere, every day wether good or bad today. 👋👋💟

7 Replies

  • Bless you ! Xxx and thank you amazing post xx 

    Gentle hugs 

    Chris x

  • Hi amandalilley

    I can identify with so much of your latest post, chest pain and how you feel in A&E!.and dealing with added pain!. I hope today is a much better day for you, it is so wearing dealing with a complex illness like lupus. Take Care.X

  • So Sorry your dealing with your lupus demon!!!! HUGS  I do have a couple questions...1. What is your pain cocktail meds? 2. What is the humiliating trip to a black watch a and e department?

  • Hi. I answer all questions honestly from my experisnces of 20 years living with my stalker...... so here goes....

    My meds are as follows

    5mg prednisolone

    4 lots of paracetomol daily

    Fentynol patch changed every 3 days 50mg

    Abstrol under tongue as breakthrough with 5mg of oxycodine, when pain hits 7 and 8

    I also take daily asprin for blood and 2 lots of anti rejection for my transplant.

    I am allergic to 90% of all known lupus drugs and now allergic to two antibiotics, Amimoxicilian and traprathean as I suffer with constant urine and transplant kidney infections.

    I have tried all known lupus drugs, all alternative therapies and all hocus pocus ones too. Some of which should never be allowed near any animal or human being.

    During attacks when I can no longer control the pain level above lupus 9 (normal peoples 15 and above) i have a triangle of care which has taken me many trials and errors to get right...Intravenous paracetamol, gas and air and morphine. This is a last result as the damage to my transplanted kidney caused by morphine is too important to use more than sparingly, as I only have one, working at 50%

    I also use daily meditation, relaxation music by the wonderful ken davis, gentle exercise, positive thought and follow the practices of the great Buddha.

    Black watch at our local hospital is due to not enough wonderful nurses and care assistants being employed and people attending a and e for non emergancies. This has happened 4 times already since January.

    The humilation came when on my last attending, in January,  on the advise of my paramedice,  due to severe Costrochronditis and being taco cardiac at nearly 220bpm, I was greated by the on call dr with a huge sigh, in front of two attending paramedics and the following statenent........'not you again, what is it this time' - the kast time I was admitted before this was just before Christmas with another kidney infection......followed by...... 'dont think we will follow your care plan (endorsed by my own dr, my renal consultant and consultant at Guys and St Thomas), its only a guideline anyway'....... this resulted in my attack lasting 4 days, with 3 days in hospital.....

    Whilst being questioned, the other on call dr, infront of me and my daughter, used the computer by our bed to look up Lupus and its symptoms, rather than talking to me....I was unaware that google was used as a diagnostic tool in a and e and was made to look and feel as though I was a nucience, time waster and possible drug addict.

    Then transfered to a ward, where was told a bed was waiting only to be left in agony, throwing up for 2 hours, on a trolly, in the corridor, as actually there was no bed at all and the ward was not expecting me.........

    No one deserves to be treated this way, whilst we were in a and e my daughter and the attending paramedics witnessed a drunk, escorted by two policemen, being given pain relief, attented to by 4 nurses treating superficial arm wounds without question, after being brough in ahead of me in an ambulance.

    Humiliation was only part of how I felt that day, I have refused 4 times since then to attend hospital, preferring to have treatment at home by local paramedics who have known me for over ten years.

    I hope my answers have helped your questions but please feel free to ask anything further.

    Thank you for your kind words of support. X

  • Yes i know exactly what you mean. I too had a great day yesterday. I managed to put some plants in . Felt great i am really paying for it. I really hope your bad day passes quickly and life becomes bearable once more. Lots og gentle hugs to you. X

  • I knew I was 'lucky' with my Lupus, as being in my 60s when diagnosed I didn't have to cope with trying to hold down a job or wanting to have a family. Reading your message my heart goes out to you and I wish you more good days and fewer of those black moments. I was interested to read your mention of diarrhoea, one of my symptoms that no-one seems to attribute to SLE. My main problem is the fatigue, so a minor issue in comparison, but who knows for how long. I have had pain in my shoulder for a few days, I fear that some other symptoms are going to put in an appearance in future. 

    I admire your courage in wishing others well, whilst suffering yourself and wish you some respite from it all very soon.

  • Thank you for your kind words. My writings and ramblings help me and I hope others, through the good and the bad. Since posting my #funny and dark side, I find its a cathartic experience, allowing me an extra outet for all things lupus, for which I am extremly grateful.

    I dont like to give advice but I hope my unorthodox posting bring people a little bit of fun and laughter and a few topics to debate.

    I would like to wish you well and send gentke hugs and hands of love and help to aid the pain you are experiencing at the moment.

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