When I started this blog I decided that I wanted this to be a really honest account of actually how these sorts of diseases and illnesses can affect you when they come at you like this out of nowhere and that is something that I have been grappling with over the past month, Ive been in a black hole and thats the bottom line. All I can say is thank god for mummy tiger and pop and a handful of friends who have texted, called and kept me going over the past few weeks. Thanks peeps, Im just so grateful to know that you are there and in my life. So heres for the honesty bit.
4-5 weeks ago just a week or 2 after my diagnosis and not long after starting this blog I hit an all time low. I was struggling with how to accept that I have a silent illness that people just frankly cant understand and really generally dont know how to react to. I look ok 'sort of' on the outside. Its not like Ive grown big green warts on my face and grown horns or anything, but because people cant see it they cant understand the constant pain, the utter exhaustion and the deep deep depression and utter lack of ability to look after myself all the time. I was feeling so lost. I was feeling so vulnerable when I stepped outside the front door. I was in a state of terror about being knocked or hurt, or tripping over, was unsteady on my feet, woozy from drugs and knackered from not sleeping! I couldn’t get comfortable, rib pain, back ache. I was having black moods. I didn’t want to communicate at all some days. Others I just didn’t get out of bed. I was too tired and everything was too much to face and it wasn’t like I could do anything fun or nice anyway. I was on my own and miserable. So that is the honest raw truth of it. I couldn’t even lick my wounds. My soul was hollow and bare and there seemed frankly absolutely no point trying to carry on with anything. What was the point? I couldn’t do it anyway. Mybody had effectively checked out on me! Some friends who I thought were very good or close friends have been incapable of even speaking to me about any of this, some have dropped me entirely as they I guess cant cope with ‘something big’ or maybe just me not being myself and bouncy and a rock for them, and then there is all the stuff I wanted to do and the adventures I want to have that 4-5 weeks ago felt so out of my grasp that I couldn’t see a light at the end of the tunnel. Pain can f**k with your mind, so can morphine and all the other stuff I was on! So there it is - I was a total mess. And thats when Mummy tiger stepped in with pop and they decended on me for a bit. The new black lab puppy too! (there is nothing a lab puppy can do that doesn’t make you laugh so actually that was a total blessing and i realised I could still smile and laugh!)
I have been abandoned somewhat by my doctors too, although I have finally found a nice doctor in my local surgery who is the only one I will speak to now. She has put me on some different medication - my happy pills which made me feel grim and sick for the first couple of weeks and now all good and the painkillers are reduced. The doctors - I mean the specialists, have a couple of different theories and they are all based around my hormones and so forth, but more scarily it seems that the contraceptive that I was taking to manage both migraine and my birth control has played a large role in the development of the osteoporosis. It is becoming increasingly likely that that was my ‘catalyst’. Now Im no genius, but I know that when I was first put on this stuff osteoporosis was not on the literature as a risk in women of my age. Now it has warnings on it but my doctors didn’t tell me as its only in very very rare cases found so far - well I seem to be one of them!!!!!! Im frankly appalled that a drug that is possibly responsible for bringing something like this on is still being encouraged at surgeries across the country. SO GIRLS - GET OFF depo provera if any of you are on it.......its dangerous and you might end up like me! This disease is NOT curable. It is barely treatable as all those drugs for osteoporosis are too aggressive to use and side effects are nasty for someone my age, and all I can do is manage what I have and eat, drink and live the healthiest and careful life possible so as not to break anything......which in my case is apparently all to easy to do.
So the month of August has been about lying low, getting through one day at a time, seeing a few very close to me who I guess can cope with me and bare me not being myself entirely. Ive seen some nice stuff, done some shopping and kept myself going and honestly - theres that word again - Im seeing the light again at the end of that tunnel.
Im doing positive thinking. Ive read a book called The Secret (its ace for anyone who is interested!)Ive started meditation to relax and try and keep positive, and Ive also found myself Dr Wang! He is my saviour. He is treating my bones from the inside out. His Chinese medicine goes back 1000 years and hes got me on the most disgusting ‘tonic’ 3x daily - imagine sticking your finger in a jar or five spice......try it its similar to what Im taking! The theory is that my blood is bad due to weak and crappy bone marrow which is cancoured by the osteoporosis so basically until I deal with the blood and the marrow nothing will get better. So he’s treating my blood with a 700 year old prescription of herbs and stuff to give me more energy and heal the bones. Its grim and I have 6 months of the stuff to take but he is sure that if I have a bone density scan done in 4 months time that my bones will have improved a lot. Now this is something that the western docs have told me is unlikely for up to a year possibly 2 to see, so Im going with Dr Wang and gonna take my chances. And the power of the mind with these things can be incredible! I feel like Im taking control at the very least and there is nothing worse in these situations than feeling victimised, out of control and not able to help yourself in any way. So Im doing this. Meanwhile my hormones are going bonkers and Im getting all my migraines again. Hes also treating me with acupuncture too to help that and the pain in my ribs with a tens machine that sort of vibrates through the muscles and bones to assist blood flow and healing process. I see him once a week and my bank balance is being slowly drained, but its all in a good cause - getting me up and running again!
So the long and short of it is that I am improving but its been a real roller coaster and the trough of a month or so ago was pretty desperate – but Ive come out the other side and yes I am getting on with my life in the best way I can now. I have my smile back, Im more myself, Im getting out more and doing a few nice things......I have purpose again. Its great!
