Tomorrows reality

I think my lungs are just that bit better this morning, well I feel like I can actually breath most of the time. Once again I am hanging on the phone waiting to book an ambulance for Thursday, and I guess I might be waiting for a while, that is at least….., wow I take it all back that was quick and easy this time, too easy. Sorry but I just don’t trust them that much, the good thing to me is the appointment is at 5:45 pm, so I am hopeful that most of the clinics that have patient who need transport will be over by then. Now I just need to fill in all their forms so that I have them ready to go. I am thinking of doing that tomorrow and doing it while I am blogging so that I can give an idea of what they ask and what is needed to be relieved before you even see a doctor. I am sure that there are many out there who have like me never been anywhere such a place before, so some of you may find that helpful. I am not doing that today as Jake is coming to see me at 1pm today, so I want all my blogs and so on done before he arrives. Jake can’t open a pay pal account but he likes to buy things on Ebay from time to time, so I set it all up and if he wins he brings me the cash and collects his item, I have one of those items sitting here waiting. I actually haven’t seen him for a while so it will be nice to have a brief catch up. He has been the most constant of friends I have had, we may not see each other a lot but we speak every week and he makes a point of calling me. He cared for his father in his last few months and I think he has a better understanding than any of my other now vanished friends.

I try hard to explain and pass on what I have learned not just here but on twitter and Facebook, but I am touching still a tiny number, and of course they are the ones willing to listen, you can’t make people listen you can just hope that something touches a nerve and the learn from there. I expect that is something that I have in common with bloggers around the planet, a wish to pass on information, not for our own self glory, but so that a tiny part of the world is changed for the good. I wish I had the power of the TV channels, not one of which have I ever seen showing programs that explain those changes that are forced on millions of their viewers. Yes there is the odd program that will appear out of nowhere, or a story line in a soap that lasts a couple of months but that is all I have ever seen. Sorry dreaming out loud again! What is on TV just now that I am finding a refreshing break from all the Christmas programming is the doomsday programs about the 21st of December, sorry but I just love science faction, as in what if our planet was….? How could be survive if….? It never ceases to amaze me how much of it I have heard in Scifi, just proving how great their research is before they start to write.

I have recently received several approaches from well meaning people with what they believe is a cure for my MS, I do research each of them, but I always find one of two things, lots of money with no proof, or that it is something once again for people with relapse remitting MS. It is 12 months since I started to blog, strangle on the 21st, but in all that time and with all the people I have met on Twitter, here and Facebook, I have only once found one person who had the same version of MS as I have, I have made contact now with over 22 thousand people, and no list of hello’s from people with PRMS. It has made me realise more and more that the chance of any cure for me is zero. I had little doubt before I started all this, as well medical breakthroughs take years not days. If today a scientist had that eureka moment, it will probably be 20 – 30 years before anyone tries it on humans, I won’t be around to see that even start. I thought that from about month 6 after diagnosis, but the longer I remain in contact with the outside world and count those like me, my chances are now guaranteed to be zero. So my life is what it is and clearly that is still a good one, it is also one without false hope, something I think can be more damaging than the illness itself. I would drive myself nuts if I were to sit here searching for that cure, that magic pill that will change everything, acceptance of where you are is really one of those important steps towards living a good life, in your new environment. My hope is there, as big and as strong as ever, but my hope is the hope that I can continue to live this life for as long as I can, not that I will be well tomorrow skipping down the street.

One day on. The Reflex

I was going to answer the individual comments but I realised to do that would remove much of what I had planned to write today. Yesterday massage looking back on it was really great when it came to two hours spent with an interesting and friendly person who understood from her work what it is like to live with chronic illness, just not having to describe everything in detail was in itself refreshing, the normal fact of new people in my life is normally long detailed discussion on how it feels to be me, I don’t mind doing that but as I said it was refreshing. The massage itself was relaxing but as she commented I didn’t seem to have the knotted muscles that most do, simple reason for that I know is I am at peace in my world and not fighting it.

So here I am 24 hrs on and what do I feel now and last night, well last night first. I did notice that the burning feeling I usually have at the end of a day in the soles of my feet was remarkably lessened, something I am grateful for as sitting at a time when I want to relax but not being able to, as I don’t know how to stop the pain in my feet, is an annoyance everyday. I suspect though that if someone who doesn’t know anything a bout reflexology sent an hour gently massaging my feet everyday I would get a similar effect. Massage does notably increases the blood flow and gentle pressure on the muscles does release some pain. I know myself that when I have a muscle that is driving me mad with a spasm that to shove my fingers as deeply into the muscle forces it to let go, I would then expect the more gentle motion to release those that are just no sitting quietly and correctly.

The rest of my body I have to say I really didn’t feel any change, well their might have been a slight change in the pain in my legs but again I can see that the massage on my feet will have helped with the blood flow through out my legs and that may have reduced and relieve some of the leg spasms. The discomfort round where my diaphragm is, which would include may gallbladder, liver and spleen what she was working on through the reflex points in my feet was the same as ever. I spent the evening as I always do, part of the time leaning forward to help with one area, then sitting back with my knuckle pushed in to my spine forcing it forward to deal with the others. I have always listened to my body and reacted as it wants as in for no reason that at first makes sense, some of what I learned online yesterday from all the graphs I found, show me that without knowing why I was using a lot of the reflex points around my body, without knowing they where there. I do strongly believe that your body tells you these things and we all do it without having an explanation as to why.

This morning I woke as always with pain in my back and dead legs and arms. So no change there. Getting out of bed and the first half hour was as painful and stiff as I have now been for years. What I have found this morning is that the soles of my feet are burning really early, by many hours. I just hope that they will settle as a whole day with it isn’t my idea of fun, I feel simply that it delayed the effect from last night to today, or it could just be coincidence.

It is hard to stay open minded about this process and to work out if it is worth the cost, yesterday was a gift and I really appreciated that but going forward it is a cost that I am not sure we can afford, at £45 per session it is a lot to commit to, with no income for myself we are having to watch our pennies. What happens now? I am sure there has to be a way of replicating the effect on my feet, because that was a real boost, but doesn’t have the cost attached. I have seen massage mats that you simply have your feet on when seated and the small movements that we all make while apparently still are meant to be enough to do the same. I will need to do a little research.

100 Birthdays and more

Recently it seems as though the once cherished telegram from the Queen on achieving the age of 100 is no longer that rare, 100 seems to be somewhat expected. When I was in my twenties it seemed unthinkable that I or anyone I knew would reach such an age and that included my then baby daughter. A respectable age was somewhere in the early 80’s and by that age you would expect to be quite frail and dependent on others, cars were almost forcefully removed by the family once you were in your 70’s, it was unthinkable that someone that age could drive without crashing, today they are vaguely discussion if it might be a good idea to retest people once they are over 75. Our expectation of life has changed so much that it seems almost unrecognisable to those I based thing on as a child. I’ll reword that, as a child I thought it was unthinkable that I could live past 21, older than that and you were so old it was unthinkable, but I expected my grandparent to achieve an age into their late 70’s or early 80’s. I think we are all forced to wonder at times how long we will live and what lies ahead of us, but more and more there is a new element that is being added into that thought process, quality of life. With medical treatments being developed almost daily, our ability to prolong life also grows. We are now expected to work past the age that many of our grandparents and great grandparent had already died by. The whole question has become a web that is impossible to cross without sticking to it at some point.

For many years I have paid into a private pension fund, which I actually never thought I would use to retire. Retirement to me seemed like an odd thing to want to do, my pension was there to cover me if I in the future required to be cared for in a home. I hoped that my contributions would secure a reasonably good level of care and support should I need it. Well that plan has shattered, I expect there will be little there to show for my effort, unless someone offers me a job, I clearly can’t afford now to make any further payments.

I still can’t understand why most people seem to have this stance that retirement it a right. Until after WW2, there was no such thing as retirement unless your family could care for you or you had savings that would allow it. With the arrival of the welfare state things changed and I agree that we have all paid into it and it should be there if needed. What I don’t get and never have done, is why it is linked to a set age. I don’t see why the age that retirement start isn’t agreed upon by your employer, your Dr and you, no one is more able to say you are capable of still working. Should you want to retire earlier then it should be you that supplies the income to do so. At this point I can feel hackles rising everywhere. If you have the health to live to be over 100 why would you want to spend the last forty odd years of your life not working?

Until MS changed everything I really had no intentions of ever retiring, I never thought I would really be able to afford to. The state pension and my private one together would never have been enough to cover the costs. I thought that I would work until I couldn’t and take retirement when forced. I am sure there are many who like me would have been most happy if there was a possibility of a 50/50 split, meaning that you could claim half your pension and work part time, once that wasn’t possible retire fully. During the part time phase you would still make payments towards full retirement. This would take a major shift in thinking and that is were everything always goes wrong, that shift in thinking is a cavern.

I’m not a political person and I have never been, but of all the issues that our government and all government round the world have to deal with isn’t which country is trying to blow up another, but how do we deal with an ever growing and ever aging population. I wish them luck.