Exhaustion, pins and needles, nausea, sickness, diarrhoea, Costrochronditis, lupus nephritis in both kidneys, loss of peripheral vision, memory loss, kidney transplsnt, vertigo, restless leg syndrome, headaches, swollen stomach, severe kidney pain in transplanted kidney, facial rash, body rash, fibromyalgia, numbness, lupus phycosis, trapped nerves, mrsa (caught at local hospital) clawed hands, swollen neck, shoulders, feet and face, weight gain, weight loss, menengitis, septicima, inability to concentrate, ibs, me symptoms, constant brusing, light sensitivity, food allergies, tooth loss, hair loss, month ulcers, virginal rashes and swellings, loss of bowel and urine contol, leg and feet cramps, headaches, joint pain, constant urine infections, blurred vision, no longer able to walk, drive or work, but most of all......
PAIN, PAIN, PAIN AND MORE PAIN
20 years with this illness, tried all drugs, threw all drugs out, tried new drugs, changed diet, changed exercises, changed consultants (even tried guys, they said they didnt understand why mine was getting worse instead of better as i got older...), dont smoke or dink and even gave up the occssional weed, meditation, hypnotherapy, acupuncture (never again), hydrotherapy, councillors (never again, aragant, nothing in my childhood made me get lupus, I was just unlucky) and I am too tired to party.. lol am 50 this year.
My conclusion.......Lupus is a ******* of an illness and whatever you do to try an alliviate the symptoms and pain, IT WILL THROW SOMETHING ELSE AT YOU..
Example: had urine infection since October, now resistant to 2 antibiotics and am on my third, at same time got up out of my chair to do my daily exercises only to be presented with the most excruciating rib pain, resulting in a trapped nerve in my chest wall, resulting further, in a huge Costrochronditis attack, at same time, which lasted 3 hours... if it was not so desperately upsetting, it would be funny.....
I now do not go to a rhumatologist, do not ask for help from Guys (called their advice line, was told to up my pred and see my local gp, 24 hours later I was admitted with a tempreture of 40.8 and menigitis!) or a Lupus consultant in Cornwall (oh wait, we dont have one, the nearest is Exeter....), do not visit the local a and e (they have no idea how to help and despite a careplan in place, think they know my body better than me), in fact the only person i trust after 20 years, is the one person who has seen how this dibiliatating illness effects me, other than myself, is my local gp, who has been with me since day 1. Thank you dr dommett.
I am tired of being a guinea pig, tired of being a revolving door to the medical system, tired of being brave, tired if smiling through the pain, tired of being proud when i manage to dress myself, tired of the inadequate help available for this illness, just because the so called professionals cannot see or do not understand how it can effect so many people in so many different ways and still kill people. Because they have never experienced it, they think they know better and if they dont know they wont admit they dont know, they just try and throw something else at the problem or best of all take more blood, despite the pain it causes.
I AM TIRED OF BEING IN PAIN and having to explain why I am in pain.
I am lucky, yes lucky, despite it trying to kill me on numerous occasions, i am still here. Although believe me, there are days, like today when death seems a better option than living with it.
I have created a regime for myself that keeps me going.
5mg of prednisone
Oxycodine for breakthrough pain with a sublingual abstral (when gets above 8), plus the use of a spray, but to be honest the spray is a last result, it tends to make my head spin, have enough of that with the vertigo........
Paracetomal, 4 times a day
Meditation with relaxation, once a day
Gentle exercise in and out of a hydrotherapy pool, when i am able, together with a little walking when my legs, with sticks alliow.
Asprin, once a day
My anti rejection drugs for the transplant
I take NO other drugs for the Lupus because for me, none have worked and I have tried them all, the best was gabapentin - the hallucinations were literally out of this world, one being....demanded to be taken shopping, naked at 3am.....because the aliens in my fridge wanted milk......very funny to my daughter who was with me at the time and has never let me forget it...lol
The only time I ask for help now is if the Costrochronditis hits a level 10, i ask for a paramdic have intravenouse paracetomol and gas and air, until it passes and stay at home....
Other than that, i cry, shout, scream, hit the pillow, eat ice cream, eat chocolate or anything else that takes my fancy, play scrabble, play heyday, collect toys, make frames, eat cake, enjoy the good hours thst i may be blessed with each day and deal with each thing it throws at me, one thing at a time. TODAY IS THE VERY BAD DAY AT THE END OF A VERY BAD TWO WEEKS OF CONSTANT LUPUS PAIN at level 9 and above. Hense the need to write.
Yes, i am tired, angry, fustrated, ***** off, hurt, in pain but after 20 years of mis diagnosisi (even the trapped nerve was diagnosed wrong as a new Costrochronditis site by paramedics), i trust myself and myself alone.
The establishment, friends, family, aquaintances, the general public WILL NEVER UNDERSTAND WHAT YOU ARE GOING THROUGH, because you are all unique, wonderful individuals who have the mis fortune of having one of the most misdiagnosed, misunderstood illnesses around. Other lupies can help and offer advice, but they are all coming from a different perspective. It may or may not help, but at least they are available and here for you regardless and do not judge...... i have been admitted at a and e for a serious infection only to be signed at by the dr on the ward and the words.... back again, what is it this time..........hense i no longer ask for help.
If I had to have an illnesses, i would have preferred cancer, at least there is a START, MIDDLE AND END, whatever that end may be................
WITH LUPUS............THERE IS NO END, JUST ANOTHER SYMPTOM, ANOTHER PAIN
May your individual symptoms, pain and struggle ease and may the universe bless all of you with some form of relief, relief is something i have yet to be blessed with, but i do not begrudge anyone who has that joy.
Hugs are always welcome, just be gentle......lol
Thank you for allowing me to write, thank you for reading and feel free to write something yourselves.
Love and understanding to all lupies.