Twin and I decamped to a hotel for the past four days and return to my flat today. It has been THE VERY BEST XMAS EVER! I have never stayed in a hotel! But we did not have a dysfunctional xmas with all the family nor the high the demands to be 'proper', as set rules do exist.
I went to dinner in my slippers, lay on the lounge sofas in my bare feet (will explain) and swam in the pool and sat in the jacuzzi with three fat men!!!!
I had to go back to flat to feed dogs and take em back to hotel where we walked em round the hills and brought them back at night.
Yesterday I went to the sales and bought a three seater leather cream sofa and a two seater so VERY pleased. That was fun as we were up at 6am and back at hotel for breakie.
But not the hard part.
Outa hospital since thurs. Muscle biopsy showed that the cytocrome oxidase was that usually found in a much older person, say 10 or more years older and the pathologist actually rang and tole me that it was very unusual in a person just gone 55, it would explain the exhaustion and I was to bumf up all the vit B's, when I told him I was in a wheelchair he just said "oh crap" which I thought funny, and in fact the fact he rang and treated me decently had me on cloud nine for days after all the crap I have been through with doctors, as mentioned in other posts here on this site.
I rang a friend whose daughter is a scholar doing her biochem doctorate on brain pathology and she said this enzynme result would indicate that the muscle cells are dying and would explain the tiredness and the muscle wasting and weakness I am having.
I also now think I have full blown sjogrens, I am so DRY, tears, hands, skin cracked tongue, mouth etc.
I am now waiting to go to London to the Louise Coote Unit in London where i do hope that they will treat me as a human being and not like a nutcase.
I have been in Pain +++ this christmas though, my hands are bright red and so are my feet and I have been holding ice to them c onstantly in the hope to calm the fierce burning sensation in both, it also effects my knees and back of calves and sometimes even runs up the back of thighs.
Does anyone know what this might be related to or even point me in a direction of where to 'google' to discover what it all may be.
I am also very very hot all the time, like having a fever, still no answers.
But folks even though I am sitting on my bed with twin asleep in the other, even though my head is lifting off with the buzzing and tinnitus and I am knackered (exhausted), shattered in pain, I am very, very happy. I cannot express what a bloody fantastic few days we had, we even had a room with a balcony looking over the harbour and the dublin mountains.
I WAS in the wheelchair mostly but I just didnt seem to care, I was in - heaven.
I want to wish all here A VERY HAPPY NEW YEAR, AND SURELY IT CAN'T GET WORSE FOR ANY OF US - CAN IT!!!!!?
Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream