Julie
You have written just what I have said to hubs this week. You have put into words what I felt like it's taken me so long to come out of my dark space as I suppose I had to do this once before. My Tale of Woe....
12 years ago I was diagnosed with MS, the young fresh faced baby ward doctor, actually said well the good news is you don't have syphilis but you do have MS. I went down into that black hole of despair I ran my own catering company I specialised in handmade fancy cakes, Cup Cakes if only i had called them that!!! and I did weddings, funerals and an occasional cricket tea. I gave it up my hands didn't do what I wanted them to do and very soon after that my back started to really hurt, lower spine it was the MS they said, 6 months went by and I could only walk 20 yards then had to stop, my arms and hands hurt I had headaches that made me just want me to die. I lived on painkillers, Evening Primrose Oil, and a low protein High polyunsaturated diet.
I finally went to the Drs on a Tuesday in April 2003 the doc saw me and said you have a slipped disc (where did that come from) go and lay down on the floor that will be best thing and rest.
I duly lay down watched medical diagnosis with Dick van Dyke ?? I dozed off, when I woke I felt very strange and when I tried to move I couldn't, if I tried to turn the pain was excruciating, I literally wet myself I had no bladder control, then I rang 999, hubs and Drs.
They all came and I was whisked off to the hospital in Coventry, we must have managed to bully some poor person off the MRI machine as I was in one within an hour of getting to the A & E. I started to panic I was gulping gas and air for the pain, my best friend arrived and she looked after hubs. I said my good byes to them and asked for the children to come to the hospital. When I came out of the MRI the consultant came to see me and said I needed to get into theatre straight away as I had no spinal fluid from my spine C1 through my coccyx up to T1 then it was clear then I had a further growth C1 –C2 -3. The reason I had headaches was the spinal fluid was not getting round properly and I then had no feeling in my legs for the same reasons but the pain was the nerves being pushed out of place. I had a spinal stenosis.
The surgeons all met and tossed a dice to see who would operate, a lovely man from Jordan did the operation, 11 hours later for him 17 for me I woke up, and he was by my bed with hubs and my 2 lovely children. He asked me how I felt I remember saying ooh! You have a morphine pump just push the switch, no I said, oh I don’t hurt, and I can feel my toes. 3 days later to resounding applause from the staff and patients on the ward I walked up and down the corridor.
Dr Machety came and talked to us, he apologised I’m so sorry he said you have been living with a terrible disease not knowing where it will strike you next. Please don’t worry anymore it was a wrong diagnosis. You don’t have Multiple Scleroses you had a stenosis of the spine. You will need a bit of TLC for a few weeks but that’s it.
I was sent home that afternoon they had MRSA on the ward.
Now Julie when you were saying about mourning, I remembered this time in my life, I didn’t have MS it was a stenosis they operated it’s gone. When everybody had gone back to their homes after looking after me, I sat and cried and cried some more, I had lived with MS for 6 years, we had planned our life on that diagnosis did that young Dr give me someone else’s diagnosis. I even phoned The Samaritans once as I thought I was going mad, why was I feeling so sorry for myself, I had something its gone get on with it. That’s my advice to myself normally.
When I was diagnosed 2 ½ years ago with Viral Poly Rheumatica, it should have been gone within 6 months, it didn't it got worse then I was told sorry it’s Sero – negative Rheumatoid Arthritis, I just thought Blood De ja vu. I’m waiting for another sorry it wasn’t that maybe it’s syphilis lol.
Julie you put into beautiful words what I have felt like and am sure what our other bloggers have felt. I like you can still walk and talk together at the same time, I can travel to far off climes with a little planning, I still pull up weeds in the garden and play race with the Grandson he runs I count, I have got Sero – Negative Rheumatois Arthritis but I’m alive, in love with my hubs, I'm well I don't consider i'm ill I just have RA, and I'm happy.
Thank you for your Blog.
Best wishes
Tricia x