Tree of Life

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Green and Gold

green and gold Oh these new papers are just so beautiful – My Secret Garden

We gain strengt…

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot.
—Eleanor Roosevelt

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G is for Gratitude….

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A dear friend of mine swung by  with a lovely picture post on my facebook page many weeks ago. To be honest I don’t really remember exactly what it was about but sometimes these little messages come right when you need them.

I have had a really tough time over the last 6 months and certainly not having my pain managed at all. Up and down – mainly down with no relief from my trusty “Lil Buddy” (my Tens machine) and painkillers. I get so frustrated that I am doing all that they tell me to do, physio, stretches, exercise, self hypnosis, fun stuff and still I just can’t be a semi functioning person.

I had an appointment with the pain doctor a fortnight ago, I haven’t met too many people that I really dislike, but I really dislike her. Of course she looked at the painkillers I was taking and I was back to the same doses as when she first saw me last May. It is certainly not my choice but you become tolerant and there is nothing that helps. Then because they are opiod based I am so worried about the whole “tolerance” issue so I don’t take them everyday and my body aches are worse than a normal day. It is a catch 22, I am always open for suggestions but no one ever seems to have any. She told me that I had to bring these pain killers down, I agreed whole heartedly but there was no other suggestions. So I did what they always tell me to do and I managed to bring myself off them again in a matter of days. A tiny dose now and I will only take it once a day.

What really was my saviour through this time was my TENS machine. I have found if I run the poor bugger every waking hour I could get through it. Of course that’s not what you are supposed to do but it has been great to get me through the decrease in drugs.

I always feel pretty despondent after seeing this doctor, I feel that if you have run out of suggestions after a year and a half what hope is there for me in 20 years time. And this was when the little Gratitude post landed on my facebook page. Right when I needed a reality check.

It made me stop and really think, I need to adjust my Gratitude scale and not an easy task for me when I was feeling pretty cranky but it worked. I have to re-assess the things in my life that I am grateful for. The first few were tough to start with and then I just took it back down to basics.

*A beautiful amazing son who I thank whoever is up there controlling this show with all of my heart. How how did I get so very lucky plus he has a really wicked sense of humour too.

*My lovely mum who gets the short end of the stick too often. She is my sounding board and she has to deal with me when I am in the most pain (going to and from the hospital), jeez I think I would just have to tell me to “Shut Up!” sometimes. She never does. I try to apologise as often as I can.

*My amazing friends and family that may sometimes think they are doing nothing at all but having a chance just to get it off my chance without having all the answers is so very precious and I am extremely grateful. This includes the invites for dinner, the Facebook messages, the frozen meals in my fridge and my food fairy neighbour who knows exactly when to turn up with dinner and always on the worst nights for pain. (How does she do that?)

*My gorgeous doggy Domino that gives me so much joy with his antics (they say dogs are like there owners and he is 49 in real years and still as mad as a cut snake!)

*My lovely vibrant personal carer that breezes in here and “Blows the Stink” off the place with her bubbly personality (oh and for cooking me a huge lasagne today as well as everything else she did)

*I am grateful that my hands can somehow still manage to give me joy by making cards, a little slow with some swear words along the way but it makes me happy. 🙂

*Sleep. Thank goodness for sleep. That on those really really awful days I can still normally be able to sleep it off. So many other can’t and it drives you twisty and magnifies you pain.

*Hydrotherapy. To be able to move in the water in ways you can’t on the land.

*Assess my pain. The worst of my pain is in my left arm and a little in my right hand and my back. I don’t have this chronic pain everywhere and there are those that do.

*Lil Buddy (my Tens Machine) You and I have become one 🙂 Without you my pain levels could have sent me twisty by now…ok well more twisty than before.

That’s a lot to be grateful for.

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Mood

I have had a rough few weeks and the end does not seem to be in sight. Yesterday I woke up at lunchtime ate and felt so shabby I just went back to bed and slept til 5pm. I never do that, I don’t allow myself to do that but I had been feeling down and just thought you know who cares. I still managed to sleep a whole night and woke up this morning with every muscle in my body aching a mixture of CRPS and withdrawals, I have fought it all day, bored, down, not interested in anything and so very over all the pain. By 4pm I thought to hell with it I am just going to have to try and take something and thank goodness it worked. No part of me feels down, bored or over it, I just needed a break from the pain. Just seems to do wonders for you mood!

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Absent

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I made a bit of a promise with myself that I would try and write at least once a week/fortnight but in all honesty I now know that when you go through flare ups you are completely absent from you life for that time. You are going through the fridge to throw out all the used by stuff that was in date at the time it was bought and had every intention of using it. But in a flare, days just slip by when you really don’t have much on your mind at all, because you are in so much pain. I try to sleep through as much as I can which is possible when my pain tablets are working but after a few days I quickly become tolerant and those painkillers no longer work at all. This time I had to try and manage a flare with hourly meditations and simple cardmaking work to try and divert my attention. By Saturday night, Mst Shazz away for the night – I was sitting alone on the loungechair, my clothes wringing wet from the sweat that comes with the intense pain. I seriously contemplated an ambulance but because CRPS/RSD is a relatively rare disease if you get the wrong doctor at the ED you will be treated as either a mental patient or a drug addict looking for another hit. I pushed through somehow I have no clue, but at the end of it, when it is all over, I feel fragile and that this bloody disease has just taken another small part of me that I won’t get back. The fog of days in bed, dazed and struggling to “use you words” because your brain shuts down too, living on :”Grab Food” this time it was pouring custard in a carton and hence the reason to chuck out the out of date food.

I have started to see an exercise physiologist and she is great. She will help me with incidental exercise, that means continuing to stretch and do minimal movement when you are in a flare. We worked through an exercise program and currently I try to get to the pool once a week for Hydrotherapy. I normally feel wonderful afterwards, every aching muscle feels stretched. I am aiming to get to the pool twice a week. My physiologist asked if I thought I could go 3 times a week. The old me pipes up “Sure I can”. In reality to get to and from the pool only a short drive away is a massive effort. Getting my swimmers on, packing my nana trolley, dressing stick, tens machine, water, noodle and now there is no carpark so in and out of the gate would take well over 10 mins. It is a good 2 hour round trip which my old self would say is ridiculous how could this take you so long? The reality is something entirely different.

Yes I will aim for more time at the pool most definitely and I know it is important – but when a flare comes along the whole game changes. A good day is a pain out of 7 or 8 out of 10 so hence the reason why a good day is still difficult. I see the Pain Doctor Friday week so I am really hoping they can suggest another avenue for pain relief as there is no cure for CRPS – I just want to be a better functioning person and in this year and a half – I am not. Don’t get me wrong now that I have a personal carer come in that side of life is much more managable, its the day in day out pain pain pain and then on a bad day horrific pain. I think I just feel bloody exhausted at the end of it – that’s all.

On my way out of it now. I have decided to stop taking the anticonvulsant Lyrica that has just come onto the PBS list as it was another thing not working. One of the side effects of weaning off this medication is what fees like a middle ear infection. My doctor just did a double check and no that ear is fine it is just killing like a bitch and deaf in that ear. Not sure how long that will last but I am hoping some other really nasty things that have been happening like not being able to feel my right hand (the good one…especially a problem when you only drive with 1) and losing the feeling in a leg as well. I am hoping they are side effects that will go by when the Lyrica is out of my system. It really amazes me how many really perculiar symptoms you get. My carves are covered in what looks like school sores (must look horrible to others) and are so insanely itchy that you will continue to scratch long after the blood is still running down your legs. I write this because these are the things I am experiencing and hope that this might help another sufferer at sometime in their life.

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Baby Owl

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