Its been a bit of a mixed bag over the last few days. My ptosis is still not resolving and my facial weakness is becomming more pronounced. Ive spent quite a bit of time on oxygen and my legs are definately weaker. My neck is also playing up and I’m finding it difficult to keep my head up. Ive tried using the collar which my sister has loaned me but for some reason its pressing on my windpipe and making me feel quite uncomfortable. So no real change in my condition.
I spoke to C at Oxford, a lovely lady. I rang and left a message on Monday and within 24 hours she had got back to me. She has given me a plan of action regarding my admission and confirming my bed. I now know who I need to call on Sunday evening and if that doesn’t work I’m to call Monday morning and I’m not to set off until the bed is confirmed. Shes also told me what the planned activities are regarding my stay. She also told me if I have any problems off the mestinon like my breathing goes haywire I’m to take it and not worry.
We had a good laugh also about how notoriously difficult it is to get any blood from me! She’s so proud of herself that she got it first time last time I saw her. Most nurses who regularly take blood take at least two attempts to get a vein. The national blood service asked me to no longer darken their door years ago after taking 45mins to locate a vein only for it to clamp up after 100mls! (did the blood donations before I was sick). The national blood service take blood all day every day 7 days a week so I must be difficult! The most attempts to get a vein was six by a student Dr. It doesn’t hurt me when they do it, I just dont like them digging around inside my arm with a needle when they’ve got it in the wrong place! CG suggested we tattoo a cross above a spot that’s known to yeild!
Ive also been sent paperwork today to renew my ESA, they actually only pay my national insurance, I don’t qualify for any benefit from them due to my medical pension. My condition has actually worsened so it should be fine but you never know, I may need to go and have a medical. I have until the start of April to complete it so I am waiting to see what the hospital admission reveals before completing it.
Laughed my head off yesterday and I mean to the point of tears! All because my husband actually screamed whilst playing Alien v Predator on the PS3. The reason he screamed was because an alien jumped out on him. He was truly terrified. I did try and point out that it wasn’t actually real but that didn’t go well!
I follow another blog called sleeptalkin man, it is the funniest thing on the internet. However if you don’t like swearing don’t read it! This guy called Adam talks in his sleep and his wife records it and puts it on the internet. Tears run down my face when I read it! It makes me laugh so much and brightens up my day every day. So if you need a laugh take a look!
I had a wonderful day yesterday. I spent time with my lovely 5 and a bit month old nephew and my parents. He’s pretty much on the go all the time and you really do need eyes in the back of your head!
Last time he was here a few weeks ago, I held him and played with him for a couple of hours. He loves it when you sing “row, row the boat” and you have to rock him in time with the music and also “patter cake patter cake” is also a firm favourite. Unfortunately this time it was all too much for me. He’s only put on a 1lb (roughly) since his last visit, but I didn’t feel safe holding him. My arms were shaking and I couldn’t concentrate. It made me realise how sick I have become in only a few short weeks. Thats the problem with this illness it creeps up on you and by stealth slowly removes different activities that previously you could do.
By the time my visitors left (and I was sorry to see them go) I was pretty much stranded on the sofa for several hours. All I could do was lie there and watch a film and wait until my body had recovered enough for me to be able to get to the toilet (my porta potty in the kitchen) My parents left before 4pm and I was unable to move until about 7pm.
I no longer panic when things are like this. I used to panic constantly when my body betrayed me in this way. I have come to the conclusion if I have to wet myself because I can’t get to the bathroom its no big deal. The suite is leather and my clothes can be washed. Its not nice but I’m not proud.I can take the chance and try and get to the kitchen, but its a hard floor out there to get stranded on, so I was better just waiting it out.
Today hasn’t been awful but its not been good either. My ptosis is failing to resolve even though I have increased the mestinon to 75mg every 4 hours. I read a site today for neuro opthalmologists, it was to do with checking for bilateral ptosis, because unless you check it can be easily missed. You may think that’s a strange thing to say – but I missed it and its happening to me. I always really consider myself to be suffering from unilateral (one side) ptosis, when in fact I discovered today its bilateral(both sides). Don’t get me wrong there are wonderful occasions when both my eyes shut! Oh the endless hours of fun this provides!
This type of bilateral ptosis is very sneaky and probably only a neuro opthalmologist would spot it. The test is very simple, I performed it by looking into a mirror. Firstly you cover up the eye with the obvious ptosis, then you close the “good” eye and rest it for 20/30 seconds. Then whilst covering the eye with ptosis, you open the “good” eye. The good eye opened fully and then slowly the eyelid began to droop and ended up in a position where it was covering over half my pupil. Hence bilateral ptosis! Not unilateral as previously thought. When the eye with the ptosis was covered the muscles in my forehead above the “good” eye relaxed letting it fall into its natural position. When I have bad ptosis my left side of my forhead fights a valient battle in trying to raise both eye brows to get my right eye to open. So on the left side I look like I’ve had a shock or a facelift and on the right side I look like I’ve had a stroke.
Just another of my party tricks that I have taught myself! Along with placing an ice pack above my right eye to cool the neuro muscular junction, this allows my right eye to open and the eyebrow to go back to its normal position.