ITS NOT LIFE THREATENING & IM STILL ABLE TO WALK

Its been a while. Not much to say really. Still no date, and feet, actually what I used to call the good foot - the left one, is getting worse by the day. 
Im at the stage now that I think Im going to have to use crutches all the time. I was using one crutch if I was out and about, but that was to take the pressure off the right foot. Now, the left foot has gotten so bad, that the pressure is more so on that. 
I struggle so much with the depression side of it all. Living with chronic pain is something that goes on and on and on and on.... there is just no end to it. It can only be marginally relieved by taking more painkillers - of which Ive spoken about previously - and how they affect me. Tramadol is an amazingly good painkiller - but has its side effects - headaches - like a hangover - restless leg and sleeplessness. Then there is the ibruprofen - I take 600mg twice a day - I could take more, but dont seem to get the timing right - and dont like what I read about effects on my stomach and liver.... paracetamol - regularly - again, the worry about my liver - and finally, a stomach protector to try and make sure I dont wear away the lining of my stomach with all the above..... I also take some sort of sleep aid -  because the pains in my feet and legs tends to be so bad at night. I rotate - 2.5mg of valium or a paracetamol night tablet - I dont want to become the lady with her happy pills..... :-(

I am amazed at how my relationships are coping. I think its a true marker of how my partner really does love me with the care he is giving me. My daughter is a teenager, so has her own issues to deal with. I have to be very clear and precise as to what I need from her. If I catch her on a good day, she will do as I request, but not so good at doing things "because". My poor Mother is worried sick about me, but she is struggling with pain issues as well. Friends wise, well, I dont really have any. I depend on cyber friends more than anything but physical friends have drifted. I wonder does this happen? I think it does. I think some are lucky to keep and maintain long friendships. 

The latest from the hospital is that it could be anytime between now and the summer - but I am not holding out any hopes. 

BUT, the optimist in me keeps saying from day to day - "Its not life threatening, and Im still on my feet" - in fact, its my mantra. 

DANCING

Dancing. I forgot about dancing. I miss dancing. I miss having my headphones on and dancing around the house. I avoid any invite that might involve dancing.
Im fed up with it all......................

Photos

These are the latest photos of my feet... Early in the day...

LIFE & RESTRICTIONS

I wanted to write about my thoughts and feelings with regards to the restrictions that having this condition has put on my life.

It may answer some questions, as I would like to think that it would not only be people who suffer with this condition that read this, but also give those who are around people who suffer with chronic pain issues a bit on an understanding as to how it affects us mentally as well.

I get asked a lot, would orthotics not help. Well, no, not at this stage. I wore very good, expensive orthotics for a long time before the damage really happened. Having spoken to my physio, I think, because of the hypermobility issues, this was going to happen regardless, unless it could have been flagged when I was much younger.
I still wear my orthotics where possible, BUT to be honest, for me at this stage - ie, the waiting for surgery stage - my priority is comfort. Getting through a day. I discovered at the end of the summer that Sketcher Go Walks are the most comfortable piece of footwear for me. I tried wearing ankle braces, boots, orthotics, but ended up in such awful pain each time that it just wasnt worth it for me. So, my footwear is now a pair of Go Walk shoes, and a pair of Skechers Go Boots for the winter. I have hiking boots, but my feet really hurt after them, then I have a pair of zip up "fashion" boots that my orthotics fit into and will wear if needed.. I dont care.... comfort over pain!!!

So, I am never pain free. Ever, in both feet. I get shooting nervy pains, stabbing pains, throbbing pain, achey pain. Sometimes when Ive done too much it feels like my feet are in vices - and being stabbed.

Mornings are hard. Stairs really hurt. Then once they have "warmed up" and pain meds have kicked in, they arent too bad for a while. Afternoon the pain and aches in the legs start.... then my body spends its time trying to cope - leading to exhaustion...

By evening time - IF I havent done too much walking, I am "just" in pain - if Ive done some shopping - or any walking for more than about ten/fifteen mins, Im in trouble. I feel like my feet are BURNING.... (I have said perhaps I was a witch in my previous life - burned at the stake!!!).... I can think of no other term for the sensation and pain....

A lot of the depression associated with chronic pain, and particularly with regards to my own situation is how limited I am now. I thank the Universe every day that I CAN actually walk - albeit with pain, BUT, each of us can only be relative to our own situations. I can look at Jimbo down the road who is in a wheelchair, or Mary with an amputated leg, or the child with cancer, or chronic arthritis, and I CAN thank what I have, but its not always that easy....
I cant go walking for pleasure anymore - that is THE biggest thing I miss. I loved putting my headphones on, lead on my little Roxy and off we would go. It was my headspace. My decluttering of the mind. We used to go for big long forest walks, or just around the town, or the beach. All those are dreams to me now. Thankfully, if all goes well, I WILL be able to do those walks again - for pleasure.

I get down about the effects it has on my family life. My partner is absolutely wonderful. I thought this would drive a massive wedge between us, but it has only brought us closer. Im HAVING to let go of some control, and he is doing more. I have a teenager daughter - so thats not so easy. Glimmers of care here and there, but she is at the very egotistic stage of the teens, so its very wearing. I worry about the worry it causes my Mum. I know she is worried sick about me, and as much as I am 46 years of age, there is truth - mothers never stop worrying about their children. So I try to keep upbeat. For all those around me, but every now and again, I sink so low.

Im blessed with my work. I love it so much, even when Ive had a hell awful week, I can still look at it and say, thank goodness for it.

So, there are  my thoughts on life and restrictions.

Budget Cuts & Waiting

Its been a while since I updated this blog. To be honest, I have very little news apart from reporting constant chronic pain and having to take copious amounts of pain meds.

I had hoped that my op was going to be in October. I rang the hospital at the beginning of Sept, and was told in a very curt fashion that "oh no, you will not be having the surgery in October, it will be at least into the New Year"....... I have to say, I sobbed at this news. I had everything pinned on October. Mentally preparing myself. Starting to put in place the backup I would be needing, etc. I was devastated. BUT, as I always do, I pulled myself together and thought right, I just have to get on with it. What more could I do??

I was scheduled for another round of cortisone injections in both feet on the 13/10/14. As before I had the same Doctor doing the injections. Unfortunately, three weeks later, and they didnt work. What a waste.

So, at this stage, where am I at? I now have developed spasming calf muscles - in both legs. I woke up at 5am one morning and my whole left side of my calf was in spasm - as I tried to massage it I could feel it twitching and moving around.... Oh the pain, but while that was doing that, the other side felt like it was going to do the same. That was about two weeks ago, and my calf muscles constantly have felt like they were knotted.... so I made an appointment to have a deep muscle massage with a physio that I use.

I went to him today, and he couldnt believe that I was even able to get around with how knotted and tight my muscles were. He worked on them for over an hour, and now, I sit here with aches but definitely feeling much looser.

At times I feel total despair. I try to hide it from my loved ones, because they already know about the pain and I know they are frustrated and angry on my behalf.

Im terrified that my left foot is going to be too bad to be able to cope with my right one being in a cast and non weight bearing (NWB), as it is already under so much pressure and as bad as my right one. But I know I will cope..... I have no choice. And at this stage, I really and truly just want to get it over and done with. I hate that I am so restricted with what I can do. I hate that I am always so exhausted by evening time. I hate that I cannot do a simple task like the weekly shopping or spend half an hour hoovering my house without having to rest my feet for the rest of the day.

I am so very grateful for the job that I have. It really has saved me mentally as I enjoy doing it and it is a seated position. I have full support from my colleagues and my employers, so I really am blessed.

I often sit and think of how much worse i could be. I could have chronic arthritis, or have a condition that cannot be fixed. BUT knowing that surgery will most definitely give me back some quality of life is what frustrates me. The Irish Government have a lot to answer for. Our health system is in crisis. Too many people are struggling and in severe pain waiting on essential surgery. We have wonderful skilled surgeons who are desperate to perform these surgeries, but due to budgeting constraints, they sit and basically twiddle their thumbs in frustration.

I am thankful for so much in my life. I have wonderful people around me, my family, my partner and my kids, who must be all so sick and tired of hearing my groans and moans, my winces and ouches. My work colleagues who are caring enough to ask how I am.
My GP's who are so angry on my behalf, and as frustrated as I am.

Im just plain worn out. Im worn out from pain. It really does wear you down. I have so much admiration for those that life lives of constant chronic pain. No wonder they are cranky, depressed, irritated - until you have been in that situation, you cannot fathom it.

But listen, the upside is, that although I am in such pain, I can still walk (albeit very painfully), I am able to drive, work, etc. And I know that one day I will walk again, for pleasure.....

PAIN MEDS, HOBBLING & WORK

Over the past couple of years, I have been dealing with pain which is long term, not short term as in a headache, or cramps, etc. This is ongoing pain. Last year, I was prescribed Tramadol, a pain med in the family of opiods. 
I have always been nervous of taking "strong" pain killers. Some that I have taken previously have given me a "buzzy" sensation which I really didnt like. But I was desperate. Tramadol helped. It definitely helped. I was taking the maximum dose, but after a few months, I started waking each morning feeling like I had the hangover from hell. I now call it an opiod hangover. Headache, nausea, etc. 
It got to the stage where I just couldnt stand it anymore, and decided the pain relief was not worth the sickness. So, I researched, and discovered that the withdrawal has to be done slowly. The main side effect from the withdrawals that I had was AWFUL restless legs. To the point where I continued taking 1 tramadol every night just to get some sleep. Thankfully after speaking to some people, it was suggested to me to take a magnesium supplement, which I did, and had relief within two weeks. Goodbye Tramadol. 
BUT, now, what to do about managing the pain? Again, spoke to the doc, and she prescribed slow release Difene - Diclac. One in the morning and one in the evening. I suppose they took the edge off, but always I had to take paracetamol at some stage in the day. Eventually I had cortisone injections into the foot (the right foot which is the "bad" one, except at the moment its the left one which is worse!!), and that gave me great relief. I did have to continue taking the Difene, and paracetamol, but not needing stronger opiod based painkillers made all the difference. 
So, ticking along nicely until two months ago when the left foot started to fail. I have to admit, at times I did want to resort back to the Tramadol, but the memories of the "hangover" were enough to deter me. I started to leave out taking the Difene, and take Nurofen Plus, once a day, but lashing the Paracetamol into me every day as well. I suppose, really and truly they just tip the pain. 
Is it placebo?? I dont know..... I am never pain free... even sitting, or lying down, my feet are throbbing. But at this stage in the so called journey, I have a mantra, something I heard a while ago, and its a Buddhist thought - if you have pain, accept it is there, become friends with it!!! I really do try and remember this on a daily basis..... allow it to be - have loving kindness..... 
If you are interested in the recording here is a link.... its a lovely way to spend an hour..... 

https://www.youtube.com/watch?v=As9jmZBCUWU 

I had the acupuncture, which did help after the first session, but the next two really did nothing. 
So now, its brufen, paracetamol, and rest. Im going to give my pain some kindness and stop fighting it. I know it  has to be worked at, but its important to accept it. 

Tomorrow I start back to work. As much as Im looking forward to it, I am apprehensive as to how the pain will be. 

And I shall remember this..... Im going to make peace with it all!!! 

ACUPUNCTURE

Last week my Mum rang me up. "I want to put something to you", she said. A friend of hers had seen a few of my Facebook posts re the pain I was in. This friend rang Mum, and relayed to her how acupuncture had really helped her with her back pain problem, and she wanted me to give it a try. 
I have had acupuncture before. Im one of the weird ones who quite enjoys the sensation of needling, so I had no hesitation in saying "I will try anything!!!!". 
So, we rang, made an appointment, and off we went two days later (Wed). 
Now I want to make something clear. I am someone who believes in holistic healing - that is, healing the body as a whole, and not "just" the medical nor the alternative, but to be able to use both when and where needed. 
I immediately liked Mairead. She had/has a lovely aura about her. She talked to me for a while, then brought me in to start. I want to point out that I was on a crutch and barely able to put my left foot to the floor. Any walking was agony, both on my feet and my back and hips. 
So, she started "puncturing" me - my feet and my stomach. All over my stomach. Some I felt going in, some I didnt, and some hit something which made me yelp - but all fine!!! 

She then left me looking out of the skylight, watching the clouds go by and listening to soothing music. No pain at all, but cant jump up and move around either! 
I just want to say this though. I didnt go to her expecting her to cure me - I went for pain relief. I know that the damage is done and that the surgery will be the only answer in the long run, but I need pain relief that only opiods can give me otherwise, but which I will take only as a last resort because they make me feel so ill. 

Anyway, she came back in after about 25 minutes, removed the needles and that was that. I have to say I was very sore - again, not from the needles, but from, well, pain. 
She did say expect this to happen, for the pain to heighten before settling, and heighten it did as the day went on. 
I had an awful nights sleep. Waking very regularly with my feet aching. 

I took it easy the next day, really rested up - staying in bed. 

Then - Friday came - and I got up to go to the toilet, and found I was able to walk without my foot on one side.... NOT pain free, but - well, easier. 
This continued through the day. I got up and got dressed and did a few chores. Still not too bad, and not needing the crutch. I did get tired very quickly, and the pain did start after 15 minutes or so. 
Saturday came and I was still off the crutch and tentatively moving around. I took it a bit easier as I didnt want to push it, especially with my "minders" giving out to me!!! 

Yesterday was Monday. I was back to see the lovely Mairead for a second session. She had said in our consultation that we would try 3 initially to see how we got on. I appreciated that as it was good to put a time limit on how much we would keep trying. Been there before where I was going and going and paying big money to different therapists and not getting anywhere. 

So, she brought me into the room again, delighted to see me off crutch, and this time needled my feet and hands. The hands hurt. They really did. Especially my right one which corresponded with the left foot. Makes sense. She also did some sort of heat work at the end with Chinese Mugwort - which had a very "interesting" herbal smell!!!!! 

Today Im very very sore. I had extreme pain in the night and had to take Nurofen Plus and half a valium. Today Im not much better. Walking on the side of the foot again, but heres hoping its just the day after settling period. I promise faithfully to take it very easy today. 

Im a firm believer that we need to learn that we have to live with things as they happen. I take it one day at a time at this stage. Its all I can do. Yesterday I had little inklings of thoughts that I might get back to work in a few weeks, but after being on my feet for about half an hour yesterday, I know now that that is quite unlikely to happen. Until I have either the cortisone or the operation.