The below was written about 10 days ago. So much has been happening, with house removals playing a large part; but I post the below now and maybe you’ll get another update next week. “ I start with my usual apologies for the lull in information from me. But there has been nothing new to report up until now. And here I sit at 24’ trying to see my iPad screen. Things are changing and amongst other things I’m having problems with my eyes, at first I thought it was the optic nerve being attacked by the MS monster but i wonder whether it is just because my eyelids feel so weighty as I’m so doped up with Pregabalin.. I’m seeing my GP on Monday so I will ask her. I have the usual blood test before seeing her so I hope she is not going to say that my system isn’t tolerating the Pregabalin. I am aware I have just about reached the maximum dosage so God knows what comes after this. Particularly if I have to come off the Pregabalin. Maybe a cocktail? Having said that, Pregabalin hasn’t got rid of the pain but I can at least manage it. Physically I am having problems getting around now. And what is different compared with a year ago, it hurts to move. So previously I couldn’t manage to walk far because of fatigue. Now, it bloody well hurts. When I’m tired I really have problems moving. And I’m not just talking about walking; The muscles all over me have been weakened, or hardened, so I find it difficult to sit without support behind me. I can’t type properly and cannot hold a pen when tired. The morning is the best time for me and if I plan things carefully I can surprise myself with what I can achieve. Yesterday I even made it down to the washing line! We were still doing the B and B lark and if I got everything done the evening before it was perfectly manageable with us doing our usual roles and I could swing about the kitchen grasping the rail on the Aga or the backs of chairs. But no longer. We’ve had our last PG’s. We have started packing up as we are on the move. Ours Purchasers are all ready to move in and have been extremely patient. We have found somewhere but the seller doesn’t have the same sense of urgency as we do, and the latest news we have had from her and her agents isn’t exactly encouraging. But we have to be out of Dadmans by 18th October. This blog is not meant to be about house moving matters, but that is rather wrapped up with what is happening with my disabilities. As you all know, moving house is an incredibly stressful businesss. I’m loathe to say any more about where we are going and I promise you’ll all know as soon as things are more definite. At least we know our purchaser is solid. But you never know what can happen. In October I have the excitement of going to see Dr Redmond again who is the consultant I saw at the Chaucer Hospital who delivered my diagnosis in such an off hand manner and then sent us off with no help or advice. Occasionally I see friends who cannot believe that there is no treatment PMS sufferers can have other than Ocrelizumab and Stem Cell Treatment. And I’ve already written about why I am not a suitable candidate for either of those. When I receivedi the letter saying I was booked into Dr Redmond’s clinic I immediately rang to check if it was him I was seeing or someone in his clinic. Apparently it’s the latter and with luck I will see the very popular Hari Krishnan (yes, really) or Dr Izzeldin who I saw a couple of years ago. This set up is because Dr. Brownlee, who I saw at Kings in London has suggested I attend a hospital closer to home. I think I’ve written about this already. Privately, I will continue to see Dr Silber in Greenwich who was recommended by Omar Malik, a London neurologist who happens to have interests in Kent. Driving is the next thing I must review. Hand controls are probably more sensible than having an automatic and driving with the left foot operating the pedals instead of the right. But I’m not sure whether it’s even worth going down that route on the basis my hands are getting weaker, and is it worth driving somewhere If, having got there, I can’t get out of the car because I can’t walk far. So I have a wheelchair or equivalent, but then I need the right vehicle to put it in. And until we know exactly where we are going it seems silly making any decisions. So life as I know it is over. And it would help if we knew how to plan the next bit. Oxygen session is over so time to go…….and I will be posting more news on a more positive note shortly, I hope. “

One thought on “The below was written about 10 days ago. So much has been happening, with house removals playing a large part; but I post the below now and maybe you’ll get another update next week. “ I start with my usual apologies for the lull in information from me. But there has been nothing new to report up until now. And here I sit at 24’ trying to see my iPad screen. Things are changing and amongst other things I’m having problems with my eyes, at first I thought it was the optic nerve being attacked by the MS monster but i wonder whether it is just because my eyelids feel so weighty as I’m so doped up with Pregabalin.. I’m seeing my GP on Monday so I will ask her. I have the usual blood test before seeing her so I hope she is not going to say that my system isn’t tolerating the Pregabalin. I am aware I have just about reached the maximum dosage so God knows what comes after this. Particularly if I have to come off the Pregabalin. Maybe a cocktail? Having said that, Pregabalin hasn’t got rid of the pain but I can at least manage it. Physically I am having problems getting around now. And what is different compared with a year ago, it hurts to move. So previously I couldn’t manage to walk far because of fatigue. Now, it bloody well hurts. When I’m tired I really have problems moving. And I’m not just talking about walking; The muscles all over me have been weakened, or hardened, so I find it difficult to sit without support behind me. I can’t type properly and cannot hold a pen when tired. The morning is the best time for me and if I plan things carefully I can surprise myself with what I can achieve. Yesterday I even made it down to the washing line! We were still doing the B and B lark and if I got everything done the evening before it was perfectly manageable with us doing our usual roles and I could swing about the kitchen grasping the rail on the Aga or the backs of chairs. But no longer. We’ve had our last PG’s. We have started packing up as we are on the move. Ours Purchasers are all ready to move in and have been extremely patient. We have found somewhere but the seller doesn’t have the same sense of urgency as we do, and the latest news we have had from her and her agents isn’t exactly encouraging. But we have to be out of Dadmans by 18th October. This blog is not meant to be about house moving matters, but that is rather wrapped up with what is happening with my disabilities. As you all know, moving house is an incredibly stressful businesss. I’m loathe to say any more about where we are going and I promise you’ll all know as soon as things are more definite. At least we know our purchaser is solid. But you never know what can happen. In October I have the excitement of going to see Dr Redmond again who is the consultant I saw at the Chaucer Hospital who delivered my diagnosis in such an off hand manner and then sent us off with no help or advice. Occasionally I see friends who cannot believe that there is no treatment PMS sufferers can have other than Ocrelizumab and Stem Cell Treatment. And I’ve already written about why I am not a suitable candidate for either of those. When I receivedi the letter saying I was booked into Dr Redmond’s clinic I immediately rang to check if it was him I was seeing or someone in his clinic. Apparently it’s the latter and with luck I will see the very popular Hari Krishnan (yes, really) or Dr Izzeldin who I saw a couple of years ago. This set up is because Dr. Brownlee, who I saw at Kings in London has suggested I attend a hospital closer to home. I think I’ve written about this already. Privately, I will continue to see Dr Silber in Greenwich who was recommended by Omar Malik, a London neurologist who happens to have interests in Kent. Driving is the next thing I must review. Hand controls are probably more sensible than having an automatic and driving with the left foot operating the pedals instead of the right. But I’m not sure whether it’s even worth going down that route on the basis my hands are getting weaker, and is it worth driving somewhere If, having got there, I can’t get out of the car because I can’t walk far. So I have a wheelchair or equivalent, but then I need the right vehicle to put it in. And until we know exactly where we are going it seems silly making any decisions. So life as I know it is over. And it would help if we knew how to plan the next bit. Oxygen session is over so time to go…….and I will be posting more news on a more positive note shortly, I hope. “”

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