These are just my thoughts and views on life with chronic pain and symptoms of RSD/CRPS - this is not meant to be a recommendation, or otherwise, of medical procedures, treatments or anything else. These are merely my experiences.
I would love to hear what you think. Have you experienced similar things?
EVERY DAY STRESS IS BAD ENOUGH—NOW ADD A RELATIONSHIP BREAKDOWN!!!
We all have stress in our lives, in fact I remember reading somewhere years ago that if we didn’t have a certain level of stress we wouldn’t get out of bed in the morning. But what happens when you have so much stress that the thought of getting out of bed is in a nightmare!!! Well add in a good strong dose of Chronic Pain and you have my life for the past few months.
For anyone a breakdown of a relationship, marriage or de facto, is a stressful time, and mine was no different. Talking about it, thinking about it, planning, packing, moving—all this contributes to your general every day stress levels. Well, I have had all of this, and what’s more I am still in the same house, I haven’t actually moved, but I did help my ex-partner move out. I still have that joy of moving to come, but for now at least I have reached the stage where I can slow down and draw breath.
Sadly, my pain hasn’t realised this yet!! Severe fluctuations in pain, tension headaches, cramps that will often mean I fall down if I have nothing to hang on to. (A tip—if you are every near someone with RSD/CRPS and they suddenly get the strong leg cramps that actually lift them up onto their toes, and they reach out to hold onto to you, don’t back away—they will fall over—I know I have done it!!) This recently meant I was outside, laying on the ground for a few hours until the pain in my legs and hips from the cramps and the fall, settled enough to allow me to slowly push myself up again—not an easy task at the best of times. I know that this sudden, and often wicked, increase in pain and other symptoms, like small bruises that have started to appear near my elbows, are a reaction to my current stress levels. And I also know that logically they will start to subside again when my stress levels go down to a more ‘normal’ range. But you see there is the catch—logically—when has RSD/CRPS ever been logical? When has it ever followed a pattern or routine? Never!!!!! So while my logical part of the brain says “it’ll get better”, my realistic part of the brain says “who knows what will happen”!!
So as well as the usual physical and emotional trauma that goes with a relationship breakdown, when you have RSD/CRPS you also have a multitude of other symptoms. It is at times like these I scratch my head and wonder—”Why did I have to have RSD/CRPS?? Why couldn’t I have something simpler?”
Why? Well, my body responds, apparently you have this condition because you are strong enough to live with it!! Or so say the motto's on Facebook and Pinterest anyway!! But then again these same motto's say that “what doesn’t kill you makes you stronger, but if I was any stronger I could bench press a Buick”!!
Oh well, I have moved furniture and boxes while in severe pain, so who needs their car shifted—ha ha ha!
SA PAIN CLINIC WAITING TIMES
With an appointment looming at the Pain Unit in a major Adelaide Hospital, I had decided to ask why it was that it took so long for those in Chronic Pain to get an appointment, mine took 3 years, and keep in mind initial appointments are for assessment only, not treatment—that takes even longer! Well I quickly found I didn’t need to ask the doctor I was seeing, the receptionist explained it while making an appointment for another patient. These doctors, in this establishment anyway, don’t work at the Pain Unit full-time, some are there 2-3 days a week while others only 1 day a week. Once you get your initial appointments, which involves seeing and being assessed by various members of the team, all with different specialities and so different points of view on how to manage the pain, then you wait a further to get the results. At least at this Pain Unit they understood the problem they were trying to treat enough to say “we can give you the results over the phone” And then I found I wasn’t chatting with one person, they were all there, all reporting to me what they found, what they thought and what they suggested. And they didn’t just tell me either, they asked what I thought, and took on board any questions I had. An excellent way of doing it. Then of course came the difficult task of booking future appointments for any possible treatment options. The other major Pain Unit in Adelaide, which in fact I went to first, is in mostly full-time staff, but still the waiting list was 3 years, and the follow up appointments took even longer. And at the end of it there was no discussion, in fact no one even bothered to tell me they had finished, my GP simply got a letter in due course. There are 2 more Pain Units in Adelaide that I know of, but they can take even longer to get into and personally I didn’t find them as helpful or understanding, and they didn’t really have a clue what to do with me!! Usual thing with RSD/CRPS and many of the other Chronic Pain conditions.
So what do we do? Well for a start as soon as you can get a couple of referrals into Pain Units and see who is available first. That’s what I did and had I left it at the first one I wouldn’t have felt that someone was in my corner, even though they are limited to how they can help. But I hadn’t cancelled my referral to the second one and I a so glad I didn’t. Even though I don’t have many answers, I do still have hope, and that is very important.
What else can I do? Well find a GP who you can talk with, and who will help you to learn about and understand your pain. Read, read, read! I can’t stress it enough, and while some articles by doctors for doctors are good most are so filled with medical jargon even your GP will have trouble understanding! So get on to sites that have feedback and stories of others dealing with the same condition. Sure no two are alike but our condition has so few medical options it is a good idea to find out more about what others do, or have done. One of the best by far is Facebook, even if you don’t contribute to begin with you can read about others, get day by day feedback about treatments and medications, and then when you are comfortable, start asking questions. There really is a wealth of information out there just waiting for you tap in to.
If you would like to have a look at our Facebook Page go to Reflex Sympathetic Dystrophy RSD—look forward to hearing from you there.
WHY AM I PENALISED FOR BEING STRONG....
Before the onset of RSD/CRPS I would have said I was a pretty strong person, but with now living with this condition for so many years I realise I didn’t know the meaning of being strong. I was a pretender, now I am a contender. Living with pain has a profound affect on all of us, this is only natural. Pain affects every aspect of our life , every minute is contaminated by pain. From the moment we wake up, usually several times a night, if indeed we are lucky enough to get to sleep. To that dreaded moment we start to try and move—gently does it. I find as my feet touch the floor of the bedroom my pain increases further, then I have to actually stand, and put on dressing gown, and move slowly and carefully to the toilet. Then off to the kitchen to put the kettle on for a cuppa, swallow pain pills, if I am lucky enough to be due them, feed the cats, who are telling me how much they adore me and will love me even more if I feed them. I then stand at the counter waiting for the kettle to boil, holding on to the counter and usually holding my breath, (as indeed I am doing as I type this). I know, I know, this is the same for pretty much all of us, some have children not cats, or dogs, but you get the gist of what I am saying. Living in pain means you have no other option but to get on and do what you can when you can. And how is it that you manage to do this 24/7? By becoming STRONG—that’s how!!!
So the fact that we are strong people, emotionally if not physically, is not our fault, it is due to the way we are forced to live. If we chose to be weak we would simply be existing—if we chose to be weak we would be letting the pain win. Are we going to do that? Hell No!!!! So, little by little we become stronger and stronger. Every time we go through a pain spike, we gain a little more strength, every time we smile through the pain so that others do not see how we really feel, we gain a bit more strength. So basically we have no choice. Right? And is it a bad thing that we have become this way? No, I don’t think so. Are we doing anything wrong? No, again I don’t think so.
So why are we penalised for it????? I don’t know about you but I know I am often brushed off because I am strong. People assume that I can handle anything that life throws at me, and while, yes, I can handle quite a bit, I cannot do everything. Some days I need someone to say, “it’s okay, I am here for you, I’ll take over today.” Instead I get “oh you’ll be fine, you are so strong.” Well I can’t be strong all the time, I don’t think anyone can. But I do feel as though quite often people use it as an excuse not to do anything for me. I am probably my own worst enemy in a way because I do not continually complain about my pain and other problem, but when I do people say -”oh you can handle it”. Instead of thinking to themselves, she hardly ever complains she must be feeling really bad to say something.
Now I know other people have things going on in their lives too—I am not silly. But hey, if you are going to keep dumping your problems onto me for advice, and I don’t mind helping, the least you could do is listen when I need someone, instead of brushing me off telling me I am strong. I may be strong, but I am not made of steel.
Even Superman had his issues with Kryptonite.
Do you sometimes feel as though we are part of the forgotten society? We don't just have an invisible illness with chronic pain - no matter what the cause, but we are one of the 'invisible' population? Often I think we are even in a separate class to the so called second class citizens. What has got me thinking about this is when I fill in surveys or forms and they want to know about my employment status. Ever noticed how it rates Full Time/Part Time/ Casual/Housewife/Student/Unemployed/Retired? Every now and then they may add in Carer. But like House Husbands, of which there are many, those of us on a pension for reasons other than being retired do not fit into any category. I don't work, I haven't worked since the start of my RSD over 20 years ago, and in that time little has changed in the status department.
I generally tick Housewife, because on a good day I am a house wife - of a fashion. But it is the closest category I fit in to. Rarely I will come across a form which includes Other and allows a space for you to write in - but I have to wonder if these responses actually are used as part of the survey, or simply dismissed. If it is a form that I can actually write on, as opposed to one done on the computer, I will often add in my own categories - I use "Disabled" quite often, "Disability Pensioner" is also common, and if I am feeling in a cheeky mood I might put in "Legal Drug Tester" or "Official/Medical Guinea Pig". All of which, I might add, are true and accurate definitions of my status. Under the category of Sports Interests I will often put "Three Legged Racer", referring to my use of an elbow crutch. And for years under the question of sex I put "yes please!"
And it is not just personal forms that have these limitations, when trying to search for Grants that may assist the Support Group I find that Chronic Pain Support for those who are generally housebound, or limited in their movements, just don't fit into any categories. If we had a group that regularly met to discuss the local Football Oval, Gardens of the Township/Suburb, or a smaller group who wanted a grant in order to count potholes in the road in regard to damage to vehicles - no problem, they all fit in, in several areas quite often. But take a small group who want to help people who live in constant Chronic Pain, who are disadvantaged in so many ways because of their disabilities and the lack of public services to assist them, and to keep their spirits up and let them know they are not alone so they don't feel like committing suicide and it is a totally different story.
I have said for years we need a Politician, (do you remember the reaction when Bob Hawkes daughter admitted to being addicted to drugs?), or a Celebrity, to suffer from this condition and then we might gain some recognition for just how hard it is to live like this, and how hard these various Support Groups, not just ours, actually work. One recent American Celebrity, who has on occasion admitted to having had a diagnosis of RSD seems to have done more harm than good for our cause as she is shown moving freely and dancing around. However, maybe she does have RSD, maybe she hides it well, maybe she is in remission. It is not for me to judge. But if indeed she does suffer like we do then I wish she would be more of a Ambassador for us, or stop using it as an excuse for "bad behaviour". I am sure you know who I mean.Anyway for now we have to fit in as best we can - if a form offers a section for "Other", please use it. If enough of us add "Disabled" or "Disability Pensioner" to the category maybe, just maybe, they will start to get the message. Whenever possible try to educate people not just on what we have but how it affects us. I try to use comparisons to other peoples lives, so I often say how I cannot shower everyday because of the horrific pain, how it is like having my skin ripped off while being shot at by hundreds of nail guns at the same time. Or I use the example of them biting down and hitting a nerve in their tooth, most people have done this, and then tell them how that moment of pain for them is a constant pain for us. People can relate to this and so get a greater understanding - and, perhaps more importantly, they remember.
But whether or not we get our own categories one day there is something we must all remember. We are NOT Second Class Citizens!! We might be hidden but we are NOT invisible. And as a group those who live with chronic pain day in day out are a very special group of people. We are stronger than most because of what we have to do. We are not victims we are survivors.
"WE ARE WARRIORS!!!!!!"
I had a thought the other day that if I could write a letter that could be delivered back in time to explain to my younger self what she/I was going to be facing with a life with RSD/CRPS what would I say? I wasn't allowed to change anything; I could only give advice on how to cope. How honest would I be? And after some thought this is what I came up with.
Dear Tracy, this is going to seem weird but this me writing to you from 21 years into the future, and I am, well there is no easy way to explain, but I am you, Tracy Pitman. I am now 49 years old, and some days I wondered how I got here so fast, I somehow never imagined that I, well we, would get to nearly 50, and yet here I am, we are. Well enough about that, this letter is for you, about you, and some of the struggles you are going to be facing. I am not going to tell you everything, just those things that I hope will help you to cope through these difficult years.
You have recently had a fall, not a particularly bad one; you fell onto a carpeted floor onto your knees, didn't you? And since then, in spite of it being a simple, silly fall, you have been in so much pain that you have to walk with wooden crutches. Your GP has said it is a simple strain and will heal in a few weeks - it isn't and it won't. You are currently at TAFE studying in preparation for University; well I am sorry to say that while you will be offered positions into University your pain will not allow you to take up these offers. You have, however, started a new chapter in your life. I know, (because I was there too), that you were studying to get into the field of Health and Care with the possibility of being an advocate for people with health issues. Well in a roundabout way you will end up doing this, just not in the way you might think now.
Very soon you will see a Specialist, the first of many, who will diagnose you as having cartilage problems, and suggest that a simple Arthroscopy will eliminate your pain. You haven't and it won't, but I am unable to stop what is going to happen, I can only guide you as to how to cope.
This will be the first of many different diagnosis from many different doctors, just about every time they diagnose you, treat you, and discover that they were in fact wrong they will try to blame you. They will tell you that you didn't do what they said (you did), or they will say you came to them too late (you didn't) or they will say it is all in your head (it isn't). The truth is that they do not know what is wrong and hate to admit it - it is about their ego not your health. You will get very frustrated when they look at your knee and tell you it is no different to the other one, when blind Freddy could tell the difference.
You must rise above this, you must put this down to their ignorance and inability to say that they simply do not know what is wrong. This will be a pattern that will go on for some time but eventually, just when you feel you have reached the end of the line, you will a doctor who does know what is wrong. Yes he is out there. And on the way to see him you will do something you have never done before, you will open, read and tamper with the referral letter. This doctor will quickly realise that you have done this but having also read the enclosed letter he will fully understand why you have done this. You will finally feel comfortable enough to pass all the written material on to him, because you will know, deep down, that you have found someone you can trust. Someone who can finally give you the right diagnosis.
Now with this diagnosis will come good news and bad news. I am not going to tell you what it is nor am I going to tell you what your diagnosis will be, this is something you have to get to yourself. But please keep in mind that this 'journey of discovery', if you like', will continue on to a path that will see you start to fulfil your dreams of helping others with medical problems. Now 21 years is a long time to try to cram into a letter and I would not be doing the journey or you any justice if I tried. But I will tell you this much, for this is important. Be strong, stay true to yourself, don't exaggerate or play down what you are feeling. It is important that others understand, as much as they are able to anyway, just what you are going through, how you are feeling, the constant pain you live with.
At the moment you are on large doses of a fairly basic pain medication, this will change, and in time you will get better control of your pain. You will never be without your pain but you will learn to live with it, to manage it. You must never doubt that it is real - IT IS NOT IN YOUR HEAD. Yes there are psychological factors involved but these come from living in pain, not the other way around. When you come across people, and you will, who doubt you or try to put you down - walk away, they are not worth the emotional impact they will have on you. Your emotional health is as important as your physical health. You will lose friends and even some family members who simply choose not to believe that there is anything wrong with you. Some will say you are a malingerer, or are lying, trying to gain attention, or just lazy. None of this is true and you know it deep in your heart.
Never doubt yourself, because as soon as you start to doubt yourself they win. And they are WRONG, and wicked and cruel. Even those closest to you will start to have doubts from time to time, but you must stay strong to yourself in these times. You can't convince anyone who doesn't want to believe so don't even bother trying. All that will happen is that you will end up being more stressed, which in turn will increase your pain.
But it is not all bad, along your path opportunities will occur that offer you the chance to be in touch with others with this condition, these people, many of whom you will never meet, will become your 'pain friends' you will understand each other, support each other, and they will look to you to help them, guide the. And you will, in one way or another, be able to. This will give you strength and confidence, which in turn you will pass on to them. You will have the opportunity to help a lot of people.
You will go through some very dark times in your life but believe me you will see the light on the other side, you will make it through and you will realise just how strong you have become. You have a battle ahead of you, but you also have an incredible adventure. One that involves meeting and befriending some amazing people. You will be in pain but you will still laugh and sing (still badly - ha ha), you will be able to truly see the beauty that life offers because you won't be rushing around. You will find the greatest pleasures in the smallest things, and often the silliest things will bring tears to your eyes, but these are happy tears, enjoy them.
I really don't want to say anymore, although I have barely scratched the surface of what is to be your, our, life. Life will be nothing as you thought it would be, but then does anyone really get everything they want in life?
Instead you will have an opportunity that many do not - you will realise the answer to the big questions - "Why Me?” "Why Am I Here?" Why - because you are you, and this is right where you are supposed to be, doing what you are supposed to be doing.
So from my 49 year old self to my 28 year old self I send love, hugs and luck. xxxxxx
PS: One thing I will tell you - you will fall in love, and he will love you - pain and all.
FINALLY THEY CAN SEE OUR PAIN....
Well like something out of a science fiction movie they have finally discovered not just what parts of the brain are affected by pain but how to show it up (see Articles & Research Info Page for more information), and from my point of view it is about time!! For as long as I have had RSD/CRPS (over 20 years now) I have been asking why it wasn't possible to see pain. I mean we have the most amazing medical technology to show just about everything and anything, so why not something that can affect a person so dramatically? Over the years I have been reading the reports about the research being done into pain, and pain related conditions, and mostly it has been looking at making a better pain relief medication. Now this of course would help the pharmaceutical companies, but as those of us with RSD/CRPS, and other chronic pain conditions, know, what works for one person will not necessarily work for the next ten people, so medication can be a hit and miss thing. This is not the direction that the answers seem to be in. But of course it is big business, and I don't blame them, the company that produces the better pain killer stands to make millions, yes it costs millions to do the research but they will still make a huge profit out of it. So over the years we've had the stories of using the toxins from the platypus quills, the poison that sea snails use to stun their prey, and even deadly snake venom, and let's not forget Botox - which some pain patients were experimenting with, with the help of doctors, long before it became so popular to have no facial expressions.
But it was clear that there had to be a better way. And finally in the last couple of years we have been hearing about those people who are locked away in dark basement labs, well they probably aren't but it sets the mood imagining them with glass pots of different coloured liquids and bunsen burners and people in small rooms with wires attached to their heads - are you getting the picture? Yes the bright sparks have been looking at pain and pain management from a different perspective. I read recently of a group in Bath University, England, who are looking at understanding why the brain goes wrong with its messages, telling us we not only have pain after an injury has healed, but that in fact we have more pain, and in many cases that the pain is spreading. They seem to have enough of a grip on this now that they are devising a way to retrain the brain to think as it should, not as it does. And early results seem to indicate that they are well and truly on the right track. And not a pill in sight. Imagine that, pain relief without all the nasty side effects that goes with the medication! Those that use meditation will not be surprised at this of course, but meditation is only a short term solution, these clever folks are looking at a permanent solution to the ongoing problem of chronic pain.
And now in recent days we are hearing of this breakthrough where they can show, on an MRI image, that pain exists. Now to be fair they are saying that it has not yet been tested on those with pain as part of a condition, and that it should not be used as a lie detector, if you have RSD/CRPS and you have one of these MRI scans done and your brain doesn't light up it doesn't mean you are lying about your pain it simply means that they don't have a full understanding yet. But the important thing is that they have made a very promising start, and are continuing on with their research. And of course now that these results are known we may hear of other similar projects.
Researchers are often very careful not to release information on what they are doing in case someone else steals their ideas, and who can blame them after all the hours and hours, often years, of work they put in. But I have no doubt that out there in the world of those who think outside the square, are other people, with other theories they are setting about proving, and again it won't be dealing with the usual opioids, etc.
History tells us that chronic pain has been around as long as man has roamed the earth. And yet, it is only now that we seem to be getting to the root of the problem. I think that this is in part due to a shift in understanding about pain. About 20 years ago Pain was taught at Medical Schools as just a symptom of disease. It is only in the last 10-15 years that young up and coming doctors, and researchers, are taught that Pain in and of itself can BE the condition, not just a symptom. And so they are looking at pain, and the management of pain, with fresh eyes. Of course there have always been those who have seen pain for what it is, a condition or disease in itself. But they don't seem to have been in the mainstream. And so no matter what great ideas and theories they may have come up with, they would have found it near on impossible to gain the required funding to do their research.
Now, thankfully, we seem to be shifting from that train of thought, and people are being more open minded, and not just the clever ones with the ideas but those with the purse strings as well.
As they say - watch this space........
NOW I KNOW WHY THEY CALL THEM PAIN CLINICS....
Two days ago I had an appointment at the Pain Clinic for a double randomized blind study trial. A What? I hear you cry...:| Basically, they were testing me with 3 pain relief medications and a placebo to see if anything worked better on my pain. Now although I was told beforehand what the medications were, Fentanyl, Novocaine and one I cannot remember, I did not know what order they were testing in, or which one was the placebo, saline solution. This was so that I had no expectations on what would work and what wouldn't, and couldn't interfere, even sub consciously, with the results.
So that I had a 'good' pain level, 4 or above on the day, I had to go without pain meds from midnight, and while I could have a light breakfast I was only allowed water while the test was being done, which in my case went from 9am to about 3pm. Then, and only then, was I allowed a light snack and a cup of coffee. So I spent a night without pain relief, a nightmare, then travelled for 2 hours in a car, double nightmare, to arrive at the hospital and sit in an uncomfortable chair, with a needle in the back of my hand, for about 6 hours. You can imagine what my pain was doing.
I did ask if I could lay down because that was more comfortable for me, but they said they wanted me to be as I normally would be at home. So I explained that with high levels of pain at home I would be laying down but they still said no. But then I was told to sit in the chair and not move around when the medication was being administered, which took about 1/2 hour, and even in between I was only allowed to move if I really HAD TO or to go to the toilet. I had to wonder what they think those of us in pain actually do all day - sit around and be waited on!! I think not.
So anyway I did as I was told and sat until about 1pm when I couldn't stand it any longer and asked if I could go outside for a walk. Yes as long as I was only 10 minutes they said, so off I hobbled as by this time I was in a lot of pain and my legs were cramping badly. I got back just in time to have the last medication administered.
Well after 6 hours of this I was in screaming agony, I wasn't actually screaming loudly, but in my head I was!!!! For you see not one of the meds worked for me. So I had gone since midnight without any pain relief, been in a car for 2 hours, had a needle stuck in my hand and the only change I experienced was that one of the meds made me a bit drowsy!!!! The only thing I learned was that there are now 3 other meds that do not work for me - great!! So then came the very painful part of having that large sheet of tape ripped off the back of my hand, and no matter how gently they do it it always feels like they are ripping off my skin with it. Then, and only then, was I able to have a dose of my regular pain meds, far too late for the pain I was in, and I still had to travel 2 hours home again!!!
By the time we did get home my partner had to help me out of the car, and into the house and off to bed. I couldn't even get my shoes off, so he had to undress me. I felt so frustrated and so helpless. It was all for nothing!!!! Well here I am 2 days later, still in an awful lot of pain, my legs are still humming from the car ride, and they are still cramping - and I am wondering why I bothered.
So, why did I bother? Well I needed to know didn't I, I mean there was a chance that one of the meds might have worked better than what I take now. It could have been a good outcome. It wasn't but at least I now know, this pain will settle in time and if I hadn't done it I would always have been wondering what might have been.
So for now, I am going off once again to rest, and I wish for you days with less pain and more laughter.
UP AND RUNNING - WELL HOBBLING....
Okay, so the website has been up and running for just a few days, and already we are getting a few visitors, even some from overseas which is exciting. There have been a few problems but thanks to the 'webs' company for very quickly sorting problems out for me. Just as well they know all about this stuff, because even though i have managed to do this I am still in the internet wilderness! The first Newsletter was sent out this week and so far people have enjoyed it with some very positive comments coming back - phew, I was a bit worried, it has been a few years since I did all of this.
On a personal note the RSD pain has been making itself known again. Because I have been devoting so much time to getting the Support Group up and going again i had been neglecting my garden which, thanks to my partner Peter, is looking great, but needs a bit of maintenance, which i don't expect him to do. So I thought I would start out nice and slow. The first day i did 10 minutes of bending down and weeding, and then yesterday i did 30 minutes. i was sore when I went to bed, but that's nothing unusual, I can be like that without doing anything. But oh boy about 10 o'clock last night it really kicked in. I still had 3 1/2 hours before my meds were due and that felt like forever, in fact i didn't make it and ended up having them a little earlier, well actually 1 1/2 hours earlier!! And even then I only got 2 hours sleep all night - the pain just wouldn't let up. And even when I did sleep it invaded my dreams - so no real rest.
We went and did our weekly shopping this morning and it was a slow wander for me. Luckily we live in a small country town and only have a small supermarket, so it isn't so far to walk to get to every thing, but by the time we had finished and I went into the Chemist I just had to sit down. I let 3 customers go ahead of me just so I didn't have to get up again. Thankfully, being in a small town, they know me and are used to this so they didn't mind. But by the time we got home all i could do was collapse onto the bed, and watch a DVD. I find that watching something, or reading a book if my concentration will let me, provides a bit of relief, escapism I guess, from the pain, even if only for an hour or so. I finally did doze off for a while and woke in time to have my next lot of meds, then back to bed again for a while.
By late afternoon I was feeling a little more comfortable so here I am, on the computer, catching up with enquiries, emails, and friends on the various Facebook pages I have. I am sure all of you with RSD can relate to what I am saying so I won't bore you with the nitty gritty, but suffice it to say my 'normal' pain is around 7-8 out of 10, last night it was 10 and now it is about a 9, which is why I am going to finish this off and go and lay down again.
So until we meet again may your pain be bearable and the people around you be kind.
HERE WE GO....
Well Hello and Welcome to the first blog I have ever done, in the first Website I have ever built - who said you can't teach an old dog new tricks - woof woof - LOL.
For me this is the birth of a new era. The Australian RSD/CRPS Support Group is back again after a few years break, and this time around we are not only snail mailing Newsletters but emailing them too, and we have a Facebook Page and a Website. Now that might not sound like a lot to you but when I think back to how the first ever Newsletter was produced, on a portable typewriter, with cut and paste, and in those days it really WAS cut and paste and involved real scissors and real glue! Then each page was photocopied, not printed like it is now, and each envelope was typed, one by one - no mail merge!! But we got there and reached out to the people who needed us, and that was all that mattered then.
Now the Website and Facebook pages are for everyone who has RSD/CRPS, Cares for someone with it or has an interest in it. Please feel free to comment on either - all Feedback is welcome. For Members of the Support Group there is also a monthly Newsletter, with articles on recent advances in Pain - management, research, etc, Stories of their experiences with RSD/CRPS from those living with this condition and an editorial covering different aspects of living with RSD/CRPS. There is also a social side where we send Birthday Wishes, Anniversary Congratulations and Get Well Cards This is important because often with RSD/CRPS friends and family leave, and the sufferer can feel very alone. So we like to send cards just to remind them that are not alone, and they are in someone's thoughts. It might seem like a simple thing, but sometimes it can be the highlight of someones day.
Anyway at the moment I imagine that this Blog will be a combination of things, the Support Group, Members, New Information, and my experiences of living with RSD/CRPS. After 21 years I have quite a bit of experience. But just like the original Support Group, it is likely to take on a life of it's own, so who knows where it will end up - I just hope you stay around for the ride.
So, once again welcome, I hope we can answer at least some of your questions. And hopefully if you become a regular follower on the Website, Facebook and/or a Member of The Australian RSD/CRPS Support Group you will realise that in fact you are not alone, there are a lot of others out there who are also living with this condition and all the trials and tribulations that comes with it.
For now, stay safe, I hope each day is a day where your pain is manageable, and try to find at least one thing a day to smile, or better still, laugh about.
Bye for now
Your Friend in RSD/CRPS