Jacqueline
Forum Replies Created
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Quoting Ed
Jackie
” My condolences, again. I’m glad that you’ve now shared this with the rest of the group so that others can offer you their support. We can’t be there to hold your hand but you know you’re in our hearts.”
Thank you Ed, and everybody, can I please ask you all to continue praying for me and to give me the strength to see myself through this…This is something I dont ever want to be faced with again..
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Yes my right hand, although to look at it, looks identical to my left hand, so only I know how it feels. I used to describe it a shrivelled up dried leaf, it feels as if the coating has come off and has a daily constant mild pins and needles which at times makes it harder to use especially fiddly things like putting the butterfly backs into the back of a pair of earrings, I have as good as given up on those. I also constantly suffer red burning and painful, particularly in-between the toes, also redness underneath the feet, on both feet. Now they do drive me crazy with the pain and discomfort. Strangely if when in bed I place my feet on a hot water bottle, my feet become more bearable and more comfortable.
Oh the joys of our MS – NOT, it just keeps on giving, or is that taking away from us?
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Quoting Ed: ” Good work Jackie. I have to ask, however, might it have been possible for your other half to have dropped you outside the hairdresser and then gone to park the car? (And will be seeing a new profile picture of you with your new “doo”)?
Replying to Ed:
Ed, well yes, but after the last time he done that it was after the 9,30am deadline and he was sure he was going to be getting a police summons through the post, he never did, lol but, I was sure it was legal to drop off someone outside before the 9.30am deadline but other half had read the notices since and told me, no we cant, it was for drop off deliveries only. Well yesterday I mentioned this to my hairdresser that since it has been pedestrianised I have to now think as to whether continuing coming here as I would have preferred to have kept it the way it was, he said, yes a car can drop off someone as long as it is before 9.30am. And of course yesterdays and and my next hair appointment was, and will be. Ha ha, I asked my hairdresser if he would tell this to my other half when he comes to collect me as he would believe him rather than hear it coming from me, but by the time I came out he was with his next client, so we both had completely forgot.
Oh yes my new haircut, well to be honest it is just a shorter and neater version of what I had before. I will see what I can do, re, updating photo but in the meantime I may change my avatar photo for the one I took on my 68th birthday, with my lifeless and straggly hair.lol
Apologies if this has gotten duplicated by me.
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I quite agree, and would you believe it? the first thing I asked for when he greeted me at the front door ( the place was empty ) was if I could pay a visit to the loo, as I was absolutely dying to go. He ushered me out to the tiny and rather cramped backroom.
Debi, I guess you are the same as me when it comes to going anywhere? we cant, nor wont go if there is not a loo at the other end. I also had to go to the loo again before I came out. I blame that on the frothy coffee they made me, I was drinking that as he was cutting my hair. lol
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I would like to think I take after my late father, he was from what we call ” a rough and ready ” family. I do feel that I am becoming more like him, especially as now I use all these positive Idioms that he once used, it is only lately I am realising what a positive person he was. I wish he was alive now to keep me focused on the good’s of life rather than the bad’s.
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I achieved the walk to the hairdressers, it was a hard slog as the top-join of my right leg was still actively doing its electricity shocks, whilst walking from A to B over cobbled stone ground, the area is now pedestrianised and where my other half decided this morning to park the car was not nearer-easier but further-harder, so I was not pleased at all, but eventually I reached inside the hairdressers, and not in the greatest of moods, but at least I did ” achieve ” it.
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Achieved.
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Here in UK and at various MS Therapy Centres of which I was a member of the Bedford-Northants just before I moved to our new address, they ran Mindfulness courses but one had to put their name down and they only ran them when they had enough people interested which could take several months, of course I was the first one to place my name on the list but, sadly I had moved away, so never got to sample one. I would certainly put my name down if I ever have the chance anywhere else but as it is too far now to travel to an MS Therapy Centre, I am not pinning too much hopes on this.
As for the title of ” Mind Over Matter,” I made a posting recently about doing that once many years ago, done it for the first time, even if I was too young and naive to have realised what I was actually doing but, it did work, so have no doubts that it wouldn’t work again, I have learnt, if one believes, anything, and everything is possible.
Jackie.
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Like many MS’ers, I suffer terrible almost daily ” stomach bloat, ” and I know much is down to the foods and liquids I eat and drink. My lower stomach bloat does affect the rest of my MS body.
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Debi, yes, I was in a tiny box room of an isolation ward, mid summer, no window to open, just a tiny jar to open from the bottom, I was trying to get what air I could, even the door was closed and I wasn’t allowed to venture out into the corridor. I just remember laying dead still on top of the bed, with the box rooms walls closing in on me, closing my eyes as I was saying over and over again, ” I am getting colder, I am getting colder, and do you believe, it actually did work, I could sense my body cooling.
I have never even thought about this since, to give it a try for our pain relief, or for anything else our MS throws out at us, but it is a subject I would interested in delving a little further into. Yes I do believe, and think it is possible, we can power ourselves into believing our pain will go away if we focus our mind on it…
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I have only done mind over matter the once, and that was when in isolationist ward with myself and my then new baby who contracted conjunctivitis…I had a hot-cold fluctuating low-high temperature and used mind over matter to get myself cold, after I was wringing out sweat, and fall back to sleep.
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Personally, I feel MS is too complicated to find a one size fits all cure.
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Oh yes, that ” heavy leg ” syndrome, mine is the right leg, quite embarrassing really having to lift it up to get into the car, I think I have the knack to it now.
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Nor mine, and if there ever is, it will only be given to the chosen few, or if you win the lottery one might be able to jump the queue and pay privately for this miracle cure.
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I have always said, ” no one goes through life unscathed.” Just because someone looks good on the outside doesn’t have any reflection on what is going on in the outside or inside. We only daily live in our own shoes. As the well-known idioms go, ” put yourself in someone else’s shoes, ” or ” dont judge a book by its cover.”
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If I have any good moments that bring back the closest feelings of how my body once felt when normal, this would happen late at night and just before I am ready for bed, and of course when this ” normal ” feeling has no use to me. I have often found myself walking and gathering up speed walking backwards and forwards from one end of my home to the other with the biggest grin on my face, as if to say, hey look at me I feel almost back to normal whilst making the most of this feeling before I hit my bed. For the last three or four years I had forgotten what this feeling feels like, well this is the closest I ever get to feeling as I once did, of course it is short lived, and once up and about in the morning, my MS body reverts back to my normal MS body, and we start all over gain.
On the late evenings this happens you will catch me praying to God or whoever is listening to please let me still be like this in the morning when I wake up, but it never ever is. If only it was something that would just fizzle out as quickly as it came.
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Well I can see why there is no urgency for creating the first disease modifying drug specifically for Primary Progressive MS, after all why should anyone worry over us elderly, as it is after the age of 50 supposedly when we get it. I was 64, when I was diagnosed 4 years ago with the PPMS, and just basically left to get on with it, and by myself. Oh well, as I have posted before, we are the forgotten few when it comes to age and treatments.
Jackie.
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Not so straightforward a question to answer, if you are unsure whether a person is referring to your health, or your life in general. Ones health could be bad, yet ones life could be good, re, family life, home life, no debt worries. One could be miserable with ones health yet happy in ones home and family life. As for me, both get me down, but I know I have survived up until now, I will survive a little bit longer. My guardian angels are seeing to that.
Jackie.
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Debi, as you say, what else can we do? we can either laugh or we can cry. What other choices do we have?
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Ahh yes, like me, I am intending to stay around a little bit longer, if only to cause some mayhem. They wont get rid of me that quick, well not I can help it.
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I hope I can, as I often tell myself and others that if it wasn’t MS it would be something else, no one sails through life unscathed without something or other, re, medical issues. Its just the ( bad ) luck of the draw, as what are the odds anyone gets anything, be it MS, or be it cancers. We are the unfortunate few.
Jackie.
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” I’ve not been too great ” or, ” I’m so so ” ( meaning I’m average for MS ) or ” I cant explain “or ” nothing you would understand.”
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As for longevity-our life expectancy..I thought we are told that we can live as long as the next, well apart from our MS might knock a few years off us, maybe. So why would you have any doubts that you might not see your grandchildren grow up? just asking.
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Debi photos, get someone to take as many photos of you and your grandchildren so they will be left with some very good memories of places you and they visited, or just times that had been spent with you.