Last night I stayed up until 3 in the morning finishing my blog on “2001: A Space Oddysey” It was good (I think) and I had just found this cool photo to accompany it……..I fell asleep. Rats! I hit the wrong key as I struggled to waken myself and I lost the whole thing somehow. I was really happy with it too….Oh well, something else has come up anyway. I got my first comment (yay!) on my blog and this person was very much interested in the fact that I was dealing “Peripheral Neuropathy” and so I think i’ll talk a little more about that. One of the strange things about dealing with this condition is that other people can’t see it. I know this sounds a little odd but when you’re on the inside looking out you can see the struggle that other people have comprehending the severity of your situation so, allow me to give you a glimpse. First of all I have to deal with the fact that my feet must be elevated for at least 6 hours a day and if I don’t adhere to that as the “golden rule” then walking is out of the question. Something about the blood flow to your feet, while elevated, does give some relief to the constant pain you’re trying to deal with. Just the fact that you’re off of your feet at all, is a relief, but elevating them is better. I wear compressions socks most of the time to keep squeezing more blood down to my feet. PAIN, is a really “trippy” thing! It supercedes everything else in your mind and forces you deal with it. It is immediate. And incredibly frustrating. So, the first thing you do is look for relief from the pain. Enter,,,,,,,,,,. the doctors……..Most Doctors don’t have a clue about handling Peripheral Neuropathy when Diabetes is not in play. There just isn’t enough documented case histories. So when you’re dealing with symptoms you’re pretty much on your own. It’s up to you to help the doctor understand what you’re experiencing and this is a huge chore because PAIN becomes your focus and not the underlying symptoms. So, you begin by masking your symptoms, which doctors are very happy to do. Right now, I take Neurontin, Hydrocodone, Mirtazapine, Xanax, Furosemide (and Hydrochlorothiazide because keeping swelling down is a job by itself) Pravastatin and 50,000 mg of Vitamin D, twice a month because I don’t get enough sunshine, all of the others I take daily and every 8 hours for pain. It’s a little project just keeping your pills regulated. I have a nurse that comes once a week to check on me and 2 doctors that visit once every two months. I have my apartment laid out so that there are things to hold onto everywhere I need to go, which frees me up from using a cane indoors. I have a shower chair because the shower is extremely dangerous for me. I have fallen 4 times in the shower and don’t even attempt doing it standing anymore…..So now you’ve got your symptoms masked, to the point where you can focus on something other than just pain, when all the other stuff is just waiting there to smack you in the face. Depression is a big one. You don’t know if you’re ever going to be able to walk correctly again and that idea is quicksand. You can imagine all the thoughts that run through a persons mind when dealing with that subject matter…………Now, there is so much more to this that I don’t think I can put it all down in a blog but I hope you’ve gained a little insight and I promise to write more on this for you..(my first commenter) in the near future. But, suffice it to say, PAIN SUCKS and takes over your whole life. Fortunately for me, we have found a part of my problem in my spine and I’m scheduled for my second non-invasive surgery later this month. It’s taken 2 years to get this far and if it takes another 2 years….so be it! I am not giving up……….thank you so much for asking me about this…..it actually felt good to share this with another sufferer and maybe help some people understand that just because a person doesn’t wear their pain on their sleeve doesn’t mean that there is no battle alive inside………..hugs-n-smiles…….2001: A Space Oddysey next…….cheers!
After The First Surgery
07 Saturday Jun 2014
Georgina Richardson said:
Although I don`t have the disease that sadly you are suffering so terribly from sweety, I do have to permanently take very strong painkillers and the trouble with them is your body builds up a resistance to them after a while, I have to take them for sciatica and arthritis which both developed after I had my youngest child Bethica 23 years ago. When I was 37 I suffered a stroke that left me with memory lapse epilepsy and terrible insomnia, so I am permanently on two different sleeping tablets and there are no stronger ones apparently! The medication for the epilepsy has horrible side affects, wobbly legs, double vision and tremours which are very embarrassing and have caused so many falls and hospital stays that I know the medical staff personally. I can no longer walk more than a couple of yards without being in agony. Like you say people can`t see the pain so those who have not experienced it don`t understand what you are going through. Geoff is my carer. So I do sympathise with you sweety. Because I can`t exercise or walk very far I find it difficult to control my weight and that has now caused heart disease with high blood pressure and high cholesterol, so it feels like it`s just one thing after another. I certainly know what you are going through when you say that the pain masks the underlying symptoms and all the severe depression that goes with it, I`m on so many flippin tablets that it`s a wonder you can`t hear me rattle from there!!! It`s really frustrating isn`t it trying to get the information over to the Doctors clearly enough, because you get fed up with having to go over the same things every time you see a new medical team!
Isn`t life a hoot!!? As they say these things are sent to try us!! At least the Doctors of the future will learn from us.
Love G xx
Actually G, this is making me get teary eyed, I want to cry because this is VERY serious. If you do what the Doctors say you will wind up with an addiction…..if you do what you know you should, you have to deal with pain that is crippling to the ego. Either way YOU LOSE!! So, the trick is this: OUTSMART the Doctors….period , end of story. If I tell you in more detail, I would be saying things that should not be said in public…….you can call me…..I will send you my number on gmail……..I really am dying to speak about this subject matter….but….I would be ostracized by the medical community if I did……..smiles,,,,,t xxx
Georgie, I didn’t understand how much we shared with regard to our respective health issues, but it does appear that you were right when it comes to God having a hand in it because there are way to many similarity’s here for it to be just a coincidence. once again I bow down to your god given extra sensory perception, I mean what other explanation can there possibly be?….you are a constant blessing in my life……I hope you live forever (lol)….just selfish I guess……..thx sweetie……t xxx