I have to say it's been a difficult couple of weeks in 'real life' which seem to have reflected pretty evenly onto MS life.
Losing Arthur has hit so hard, the circumstances of it, rather than that he's gone have been very difficult to get my head around. I've had difficulty sleeping at night, but have no problem simply falling asleep in the evening in front of the television. Tiredness naturally means things like wonky legs, rubbish balance and random patches of numb appear and disappear when they feel like it.
The funeral is now planned for March 2nd (the day before my birthday :-( ...) these things take so very long to arrange when someone dies in circumstances like this, but at least we have time to plan and grieve.
In other news Amber dog has become quite 'zombie like' again on the KBR medication, so we are tweaking the dose a little to see if she comes out of it a little, it's really having an impact on her ability to 'hold it' and there have been some accidents. Having experienced something like this as a result of MS, I have no concerns about clean up, but it's really having an effect on her mentally when an accident happens, she knows and she hides here head and tries to sink into the floor - it breaks my heart to see her this way. But when she's out at the park, she's happy and bouncy and has the biggest smile - so we have to see how it goes and do the best we can for her - I've tweaked her schedule with the lady who comes in while we are out at work - fingers crossed it helps.
In the interim I'm playing with the NHS and the referral to the new Neurologist in the Berkshire area. The automated 'book your own referral system is a steaming tower of turd, after 3 weeks of trying to book online and getting 'there are no appointments' message I finally reverted to phone calls today. Having replicated my outcome using the password I was sent I have now been moved to the 'we will send a letter to your home' method - however they can't confirm if it will be the Neurologist requested who I'm going to end up on the list for ..... so that's another hurdle that needs to be crossed if it happens.
So the recipe for the week is sleep, sleep and more sleep I think and get get everything back in order.
I had my month 21 post Round 2 blood tests this morning and spectacularly failed to pee again so I'm trying to remember to fill a pot today so I can drop it in later on today.
All in all life is great MS wise, the other stuff will be okay
Much love xxx
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
Friday, 16 February 2018
1y39wks Post R2 - Apologies for the absence
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