Wednesday, June 29, 2011
We are still having rocket fire all over the place, the purple church for the last couple of weeks and up to July 9th it seems!!!
My nose is red from a drive to La Cala market this morning in friends open top car, love it! But must remember sun screen on nose next time! Its glowing so much now its light will keep me awake later!!!
I'm leaving the fan on for Pip when I am out at all during the day, its so hot when I leave, but its still keeping cool down stairs in the evening and nights, with the persianas down and windows closed, but Pippa won't stay down there during the day and chooses to hide away up stairs where, of course, the heat is!
We wake up in the mornings in a boiling hot up stairs, even with the fans on, and come down into the cool, right now my skin is cool, and bites!!!! Everyone I know is being bitten this year? Maybe the late heat? the rain last month? Don't know but getting fed up chasing the little critters about in the evenings and still missing the hungriest one who wants to feed off me at night, and very fat he must be by now!!! Got some good bite cream now though, ah ha!!!
Had a very very painful day yesterday, I suppose now I know what exactly it is that's been causing the pain over the last few years I should understand and be more careful with my actions, for instance I was getting some photo's out from their place and in such a way was idiotic of me to do so! Its been alright me being so obstinate with the fm, I always knew even if it hurt or I pushed myself too much, I wasn't actually damaging anything, it just hurt, and would hurt for a while until... well until sometime, but I guess these cyst things being the size they are, me moving around is squishing them badly, and yesterday the pain was worse than I can say, at times making my eyes fill, and during that, some of my toes went numb???
Anyway, going before I go on further.... Have heart scan on Friday this week, so, we will see, what we shall see, I guess!
Today I begin to understand what love must be, if it exists.
When we are parted, we each feel the lack of the other half of ourselves.
We are incomplete like a book in two volumes of which the first has been lost.
That is what I imagine love to be: incompleteness in absence.
~ Edmond and Jules de Goncourt ~
Wednesday, June 22, 2011
Then just over 3 years ago, nearly four now even, I began to have other symptoms, the pain was different and I feared it was just the fm getting worse, changing in some way...
I went at last to the doctor, as I knew something was different, and the pain is so much worse, I knew I couldn't carry on like I was, also there was the erratic heart problems and high bp.
So I was diagnosed with Spinal nerve root cysts... This is also a chronic pain problem, also something that effects so much of ones body... A Letter to family and friends on the site explains how it feels, and so much of it is very similar to fm also, [apart from painful pressure points, brain activity whilst sleeping and a million other things!!!!]
So below.... This is me folks! However I might look, however the smile on my face, my laughter, the me that's got me through since 1989 with the fm, and now this, on top of it all.... But I am still bloody minded, stubborn, strong minded and determined to carry on, and continue to carry on, until I really cannot carry on any more!
Dear Family and Friends,
This letter was written in hopes of improved understanding of those who live with symptomatic Tarlov cysts and the chronic pain, nerve damage, and life altering changes they can cause.
Having cysts on my spinal nerve roots and the resulting nerve damage causes chronic pain and means many things in my life change, and a lot of them are invisible. Most people do not understand about relentless, intractable pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me and my medical diagnosis.
Please understand that living with this medical condition doesn't mean that I am not still trying to live a "normal" life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don't seem like much fun to be with, but I'm still me…….. stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I worry about how the changes in me are affecting you. I care very much about my family and my friends, and I'd still like to hear you talk about your life, your family, and your activities. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do.
Please understand the difference between "happy" and "healthy". When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I've been living with this diagnosis and its symptoms for years; I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in pain, or not extremely fatigued, or that I'm "getting better". Please don't say, "Oh, you're sounding good!" or "But, you look so good", as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery.
Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn't necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn't mean that I can do the same today. With this medical condition, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style.
Please understand that chronic pain is variable. It's quite possible that one day I am able to take a walk, go out to lunch with you, go shopping , although when I get home or the next day I'll have trouble walking to the next room. Please don't be confused by saying or thinking, "But, you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do.
Please understand that "getting out and doing things" does not always or necessarily make me feel better, and can often make me seriously worse. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don't you know that I would?
Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I pay for it dearly .You can't always read the pain on my face or in my body language. The pain is not caused by depression. The sadness and sometimes irritability that you might hear in my voice (even though I try hard to hide it) is from the pain and adjustments I have had to make in my life to go on, and it is due to the changes such as the loss of my job/career, my inability to jump in the car whenever I want to run errands, see a movie, go to a restaurant, visit friends, shop, clean my house, work in my garden, etc. as I did previously.
Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can't be put off or forgotten just because I'm somewhere else, or am in the middle of doing something..
Chronic pain does not forgive, nor does it wait for anyone.
You may have wondered why I don't just take something stronger for the pain. I have tried many different medications, as well as surgery which did not result in improvement for me, although it has for many patients. I have developed many more cysts since my surgery. I have been made worse, not better, due to side effects or allergic reactions from the medications. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there is only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are not indicating a high percentage of "complete cures"; however many patients are much improved.
If I seem touchy, irritable, or distant occasionally, it ¡s probably because I am. It's not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, cleaning, gardening. You know me well enough to know it is very difficult for me to ask for help.You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of understanding from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. Thank you for trying to understand what I myself do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this medical condition has blessed me in many ways.
The Tarlov Cyst Disease Foundation's vision is of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed, and easily treated, so that those afflicted should not suffer needlessly. We hope to make the path a little easier for others with this rare diagnosis; we hope our efforts will bring about a cure in the future.Reta Honey Hiers, R.N., C., President
Well, there it is, the high-lighted bit is all me really, the bit about the operations etc, who knows yet, lets hope what they decide to do here to help me works, because by the sound of it, the other option doesn't sound too good does it!
Now I have depressed you all, go get a glass of wine or a beer eh!
Thursday, June 16, 2011
On Monday I went into the bank to pay the IBI [council tax], rubbish and sewerage bills...
He, cashier, noticed something I hadn't, typical! That the date on them was last years dates, so he had torn off the bottom bits, put the money into my account, instead of just scanning and paying the bills, then he said, these are last years! You need updated invoices to pay them... I said how strange as I have paid them.... he just told me to go to the office to see....
I checked my files[!], and was correct that I had paid them, last August! by the way!
la la la.... This morning, well I had to leave it a bit, you know build up the momentum for the conversation of hell! In I went, I didn't take the receipts from last years payments, I know what can happen when you hand over original documents, in the past they have been taken and thrown away and copies given!!!!
So! In I went, I said these had come through my mail box a month or so ago, and did he have this years to pay... He said that they are not due out for delivery until August! That he didn't know where these had come from and that....click click click... I had paid these in August last year! Yeah!!! Just like I knew I had.... So out I went, only a matter of minutes from going in!!!
Then I had to make an appointment for the doctors... in I went, up to the desk, asked for an early appointment as soon as please! Tomorrow morning early! Fantastico!
I had phoned Vodafone myself earlier in the week, having tried and tried previously in the shops to get my contract cancelled, but it just never worked out! I had tried a number I was told would put me through to an English speaker, that didn't, wouldn't! And was never working!
So I had just called the regular number, cup on tea to hand, ready for a long hawl.... But NO! I asked for an English speaker and English"!!! So I said I wanted to change to pre paid... And he took all my details, then I said what price plan I wanted and he said yes fine... 6 and half minutes later, tea still hot I went back downstairs, in shock! But, and its a big but, I'm not so sure he has cancelled my account, and not just changed my price plan!!!
I guess I will find out soon enough eh!!
This morning a child was hit whilst crossing the road, on a crossing, with her Mom and sister, the man didn't see her, and she was thrown into the air, still holding onto her Mom's hand! She was ok, thank God, just a scratch on her elbow... I arrived just after the incident, thank goodness, wouldn't want to have that in my memory, and I'm sure the poor child doesn't either of course! You know, no one called the police??? Someone took them to the medical centre, but nothing else was done????
The doctor at the hospital said if my bp came down below 110, the upper number, to come off my bp meds, it has today, I hardly have any bp at all!!! So tomorrow I will leave it out! Just take the Beta blocker! Bit worried about this, but that's what he said... So there we have it amigos!
Sunday, June 12, 2011
We had a whole plateful of meat from Uruguay.... Look away now if your not a meat eater please!!
Couldn't get the whole bbq area into the frame!! I did try standing back to take a better shot but people just kept getting in the way.... as we do!!!
We had had to get the bus to Mijas, the 2:30 from Alhaurín, which didn't get to our parada until ten to three! So was 20 minutes from there to the pueblo, unbelievably a guy at the bus stop asked us, more Franco really as I was hiding in the shade of the bus top... not much as it happened, but, sorry back to guy... he wanted cigarettes, so left his small daughter alone, with us, and 3 or 4 single guys and another couple... to get go them!!! The shop was out of sight from us, and I still can't believe he just left her with so many complete strangers!
I went with friends to the lakes again! And found that the tree by the church is a Mulberry tree! And in fact there are two of them there! Well never too old to learn something eh! I took them to the top of the mountain first with the reservoir and Bobastro remains, we would have had a coffee in the bar up there.... but bar gone, sold, and it looks like a private house now only, and a very beautiful one at that!
From there down to El Choro, the railway station bar and coffee.... and then to the lakes at Ardales! By then 'they' were almost tourist'ed out I think! So we had some very nice food at the Kiosk restaurant over looking the main lake...
I then pushed my luck and we walked around the corner to the two dams, the old, and the new... And then, went just a bit too far and took them down to the lower level of the lake... where they almost lost the will to live, well one anyway! He had had enough of the tourist trail and just wanted to leave the place... So we did!!!
We had a meeting at work during the week, and I was thanked for my TV appearance! Did anyone actually see it? I hope not, but I have been advised I will be doing it again as it brought so many people in??? I think they wanted to see the clown who spoke gibberish do you think!!!
Have dates for my heart scan now, July 4th! And results from that a couple of weeks later... Just wish it was sooner, all seems to be taking so long, and still not quite got used to these Beta blockers, still hoping I won't have to take them forever...
Feeling a bit vague now actually as I type, so will leave you here, with a quote I came across during the week... I have a few actually, that came just when I needed them, and one beautiful poem from Saint Augustine a good friend sent me.... which I have just now, as I write, found on YouTube and posted herein...
You see I took a step back this week, I felt like I had lost my Mom all over again... I came home one afternoon, walked into the kitchen, put on the kettle to make a cup of tea, and thought, as I do every day, that I would phone Mom, and bam, I burst into tears, and for all the rest of that evening and into the next day, I cried like I had last year...
The truth is that there is only one terminal dignity - love.
And the story of a love is not important -
what is important is that one is capable of love.
It is perhaps the only glimpse we are permitted of eternity.
~ Helen Hayes ~
Sunday, June 05, 2011
From there we took the Pizzara road, stopping off there and walking into town for churros, the stand didn't have any chocolaté, must remember to carry thermos of creamy hot chocolaté at all times to save further un happiness having to eat churros without the hot chocolaté... back in the car, also, of course sugar less! I normally have some sugar in my bag[!!!!], but also today, none of it! At present, now I think of it, there is one solitary churro left in a plastic bag, in the car, keeping warm, or even very hot, considering how hot the sun is today, even now at 7pm!
Summer at last, and about time too..... Just published this and checking it out realised I haven't explained the photo above, there is a monastery, its about mid mountain, and over to the right a bit, a while building, zoom anyway... oh and I am just guessing about what it is, sorry....
Above a great shot of the road... less travelled these days, maybe! Managed to get over it ok, although on reflection I think should have taken the part of the road that had already sunk, because driving over the higher bit, about 5 foot higher, felt decidedly dodgy!!
Then further along, the pic below, you can see how the side of the road here has actually risen, not fallen.... So, no complaining about pot holes over there in Blighty por favor mis amigos... these are what real pot holes look like! You don't lose your tires over here, you lose your whole car!!!
And below a new'ish, what we thought was a road, and for the past couple of years, we thought it was a road, but on closer inspection anyone can see its a railway line! A very high railway line! you can see this from so far away, even nearly here! And where we spent my birthday last year, when we thought it was an empty road!!!
And finally below, a view of Alóra, taken from a garden centre car park, we didn't go into Alóra today, but there on the mountain on the left you can see a castle...
The garden centre was huge! And had the biggest restaurant I have ever seen in a garden centre!!! They are 'doing up' the rest of the place, but still had plenty of plants and gardenware!!!
Alot of the roads we travelled on today were in a state of bad repair, just like a couple of weeks ago, if people drove too fast, in the dark, they wouldn't last long forsure!
Our journey ended, as it has before strangely by coming down the mountain that over looks the Garganta restuarant and El Chorro station, passing the restaurant near the top where we went with Tony some years back now... Although not entirely sure if it was from the same direction! As if I remember correctly we passed the restaurant on the left, and not up the right on a side turning? This means nothing to you, sorry, rambling....
I think I am getting used to the Betablockers now, its my fourth day, and I seem to be typing ok, Mmmmm, did a typo there, so maybe not! And still confused how the meds make me even more tired than I normally am, but also give me insomnia at night! How does that work then???
Oh and today whilst out, I saw another owl! Asleep on a fence post, on the Alóra road! And then later we saw this terrific little lizard crossing the road infront of us! And in a major hurry he was too! His head held high, legs going as fast as he could, bright green in color.... Sooooo cute! Trouble is the only photo I have is the one in my minds eye!
Came home about 2pm and sunbathed up on the roof terrace, summer is here[I hope!], started reading a book I haven't read for years, and years, Silver Metal Lover its called...
And now there is a robot movie on tv... oh well!
Thursday, June 02, 2011
Ok amigos, had to write notes beneath so I don't forget or get mixed up, and maybe I should start with the note at the bottom, in case nothing makes sense here, I am taking, for a while I guess for now anyway, some betablockers to try to regulate my heart arrhythmia, and am thinking when its sorted out I can off them, hope so, either that or these symptoms go, or I get used to them, whichever is the quicker, only been taking them for two days, but am having trouble typing, thinking or pretty much anything, make me so tired, no not actually tired, fatigued, maybe, as last night despite being so tired I kept waking up all through the night and not actually feeling like I would be able to go back to sleep!
Tuesday was a terrible day! It began with a television advert.... I was supposed to do, for Cudeca, what a mess, and it really was, I am not just saying that, seriously camera shy, although not helped by the fact that another girl should have been with me from Cudeca, doing the Spanish bit, so I was on my own, only person speaking English, and a girl from the company was trying to help, but her English was so bad I couldn't understand a thing she said to me!
Another woman introduced me, sort of, didn't ask my name, and I was too dumb to even say who I was when I began my introduction to the Summer fair on Saturday, at 10am until 2pm, and all we have for sale etc etc, I was actually speechless, yes! Totally, well apart from a new language I learnt very quickly, and very fluently, its called Gibberish! Absolute Gibberish, that's all I spoke! So I have decided to stick to only one type of television now, and that's CCTV!
Then, I went to work, and gibberished my way through the humiliation of telling people what a hopeless wreck I was!
In the evening I had my hospital appointment, for my results... Which they actually had! From both the heart monitor test and the MRI, the MRI showed I have spinal nerve root cysts... a couple over a centimetre in size, they need operating on, but not until I have had my arrhythmia sorted out! The appointment I have been waiting for since early February has still not come through, it sounds like an ultra sound scan, they will watch my heart and see what its up to, then see what's to do! My friend picked me up from the town centre, just before 6pm and we got to the hospital in Malaga very quickly, it was 30°, and felt like it! The good thing, although there were lots of cars, not many people left in the hospital! We almost walked straight in, no one in front of us to go in at all! My friend is leaving the area, so who knows what we will do without her!!!! We won't know what the doctor is saying, or him us, we could come out with all sorts of things, or come out with nothing!
Anyway, the op on my cysts.... lovely! Cysts... And this is a shot in the dark, but reading about them and the symptoms of them, it seems they can cause Fibromyalgia like problems, wouldn't it be funny if they have been there for the last twenty years, and its been them causing all my pain, fatigue, joint pain, sleepiness nights.... Oh and yes I know I am clutching at straws, but one can hope.... Can't one???
And today rain! In June.... oh well.... just a smattering of it, and its been so humid the last few days... At the boardroom this morning we got the centre table, the only dry table in the house, so to speak! I was somewhat disorientated at the table this morning, didn't really know who or where I was! And its taken all day for the half a tablet to wear off and I go and take the other half!
At least no one seems to have seen the tv advert for Cudeca summer fair....?? At least no one laughed at me in town today!!! Its on the net somewhere too, I can't find it, I seriously cannot find it folks, I am not just not telling you where it is, maybe they decided against showing it? Although of course, I suppose I probably sounded just like I always do? I was speaking English after all, and Gibberish, in English, may sound not so dissimilar to my normal talking!!! lol
Think that must be it for today.... Oh no, before I forget, I called Telefonica on Friday evening, really bad crackling phone line, almost impossible to hear from my point of view, and by Saturday mid day, a man was here to fix it! Turns out where we had the really bad damp in the bedroom the winter before last, the box had got a bit rusty, or something, so he advised me to buy the new bit, which is what happened on Monday, I came home and wired it into the wall, and hey presto, clear line again!! Strange that the telephone man didn't carry any actual parts in his van, isn't it? Or maybe not!!!!
ps view at the lakes, the water measure line...