It's been over 7 years since I started on my Lemtrada journey. It's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Thursday, 25 April 2019
3 years 49 weeks - life returns to something vaguely resemling normal
Oh dear I’ve just read back that last post that I thought I’d done pretty well in the dark courtesy of Siri …. Apparently not, it’s garbled there are some ery odd things here, but I’m going to leave it as evidence that Siri is an idiot and I was pretty blind at the time.
Apologies for nearly 3 weeks of silence, but the eye injury turned out to be far more serious than we had ever imagined it would be. The Ulcer in the gouge in my left eye was infected. It took 5 days of drops on the hour, every hour 24 hours a day just to get it a little under control, then another 4 days of every other hour 24 hours a day. Over the Easter weekend it came down to every 3 hours and as of Tuesday I’m down to every 4 hours but also have a gel thing that has to go in 3 times a day as well.
The infection has caused some scarring to my cornea which the Ophthalmologists think is permanent and has caused about 25% sight loss in my left eye.
Fortunately I guess as I (very badly said in the last post) my left eye is the rubbish one anyway so 25% of not a lot isn’t really the end of the world. It’s been quite disorientating learning to see around it, the headaches and light refractions around any light surface distracting. But all in all ….. could be worse.
Having a ‘blind’ bit in my eye isn’t how I thought it would be, it’s not dark for starters, it’s like a piece of frosted bathroom glass is in the way, it’s a light bit of frosted glass that I can’t see through but it’s not dark.
I’m back at the hospital in a couple of weeks for the next review, so more on that one later.
I went in on Tuesday and tried to get my monthly bloods done, sadly the new nurse couldn’t get blood from me, either I turned into a stone, or she had performance anxiety trying to do it in front of the trainee nurse J So I now have a massive bruise in my left inside elbow bit.
It was Gareth’s 40th birthday on Friday, a surprise visit for him by his parents and a surprise dinner with friends on Friday night. It was a lovely weekend although not without its challenges.
Sunday lunchtime we tried to drive down to Portsmouth to see Gareth’s grandmother and were witnesses to a very serious head on collision on the A33 and spent a lot of time out in the sunshine helping look after the injured the police, fire and ambulances were magnificent and were impressed that the head on collision was so well organised when they got there (Off Duty poolice traffi cofficer, ex army, first aid trained program manager co-ordinating the post accident activities - we were awesome),
Then an unplanned taking apart of the spare bed frame and dispatching it to the tip because it was completely broken, a trip into Reading to disassemble another bed frame and bring it home and reassemble it in time for Gareths parents return from Portsmouth.
By Monday all I wanted to do was sleep and get over the 4 day weekend J
I’m back in work now after a whopping 2 weeks off, the first sick note of my entire working life – seriously never had one before until the ripe old age of 47 – that must be worth some kind of achievement badge J the 4 hour drops and gel cycle is manageable now and I’m starting to feel something vaguely resembling human again.
Back to the doctors tomorrow having drunk a gallon of water to see if this time they can get blood from the stone J
Hope everyone’s having a great one, much love xx
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