Pills and Potions

When I left the hospital there was an enormous amount of pills and potions to take. From anti- inflammatories to hard core opiates. (Pictured above.)

But as many people have said this is major surgery and when you have had some of the largest and hardworking muscles cut, it is going to hurt!

And I have spoken about blood clots and the needles.

Yesterday we reached a milestone, the end of the needles. Mr Gin, my hero, is just as pleased as me to see the end of these! 30 days of the ‘stabby’ alarm, of the stabby dance and injections that hurt to tears and ones that were prefect. As time moved on the time for the injection was later in the evening and sometimes we were out. We did injections in disabled toilets, sitting at pub tables and at dinner table.  So goodbye needles!

The other thing is a lot of the pain meds are being cut down. I started with tramadol at least three times a day and oral morphine at night and the full does of Naproxen. I have cut back the morphine to a point it is a very rare occasion it is needed. I have two Tramadol free days! I am heading out today and may need one but I am now taking it on a needs basis. (The huge plus side to the drop in opiates is my digestive system is slowly getting back on track!)

I do throw paracetamol in to the mix as paracetamol is a wonder drug as far as I'm concerned. It gives a kick to everything, especially opiates. Tramadol has a longer life span when paracetamol is added (and same with morphine).
So, frankly I am pleased with this. The next goal will be giving the Naproxen a kick but the muscles get too heavy and stiff without them.
Goodbye needles! Now waiting to see the surgeon to see what he thinks, roll on the 1st of March.

Two weeks to go and I can not wait.

So, it is two weeks today till surgery and I can not wait. I am over the pain and in the grand scheme of things I have little to belly ache about it.
I am in the privileged position that my pain should disappear within month of the operation.  It may hurt from time to time but it has always been manageable. I was born broken and although my mother did the best she could in a small country town, I was not fixed. In the end a very good surgeon did the best he could with a bad situation. We knew that it was all going to pear shaped at some point and it was just a matter of time. Having always being broken, I don't really know different and it is just a way of life, frustrating at times and down right depressing at others but on the whole fairly happy and my normal.
Recently, someone on the Internet suggested I had more right to complain about pain and illness than others, because they felt I had an identifiable issue. ie mashed up hip. And I was 'allowed' to whinge. This rankles quite a lot.  Not only because that sort of statement is pretty ridiculous but also because it touched on something that I have been thinking about for a long time. The privilege of pain and that I am in the white straight man zone.
First, I just want to talk a little about pain. Up until recently I have had bouts of being pain free, if I sat for a while or was in bed it was pretty good. I know can feel the joint in bed and some day there is little I  can do to ignore it and have taken all the pain killers. I hobble about and swear a lot and rest a lot but I can get stuff done. Not as much as I would like but I am pretty good at working out what I can get done on a given day. But I have had to adjust everything in my life. I am not out as much, when I am out, I am packing heavy pain killers so I can walk, socialise or generally try and live life, within a hip that is rubbing bone on bone allows.
It is isolating because being at home is the best, less distance to walk, no pesky public transport and comfy couch and amazing bed. Our couch also allows me to lie down and there is a big arse telly with Netflix and a the Skybox. So, home is safe and cosy but we do live a fair way away from most of our social life when you are on a cane and restricted with distance.
That isolation plays havoc with your mental health, social media shows people out and about doing things, some that you have had to turn down. As time wears on getting people to come to you and getting to things becomes harder and it is easier to curl up at home. At home I have one person to complain to. Mr Gin is lovely but he does not need to hear that, me being in pain is tough for him too. He is doing more around the house and in general being the rock for my crazy. And crazy is the operative word. I have a couple outlets, social media, taking photos and sewing. Sewing is becoming difficult as the standing and the physical action of using the sewing machine foot is getting harder. So, the outlets are becoming smaller and social media is the best place to feel less like you are alone, driving the love of your life nuts. Facebook is a pub and twitter a huge nightclub.  Inevitably you end up being that person who has a one update. Or a couple, that revolve around how shitty you feel and you are cancelling again. But it is an outlet and an important one.
But I am very privileged. I have a light at the end of my tunnel, I have juggled and am on a road that should lead to new and possibly a better normal. As long as it does not go wrong relatively pain free, able to dance all night and then walk home. Why is this privilege? Because there is an end.
I have a number of friends with chronic conditions there is no end, there are less pain options but you have to give up something in some cases or there is simply nothing that can be done but managing life and expectations. And that isolation I have only had to deal with a short period is their life. And justifiably they have to have outlets because life is bed of roses and roses have big bloody thorns.  One friend, who has Ehlers-Danlos, a rare joint disorder was on the receiving end of some nasty stuff because she vented on Facebook. I was once briefly was misdiagnosed with Ehlers-Danlos, I am just overly bendy, nothing that causes the issues she has. And has no way to get away from them. Personally, I would be complaining a lot more than she does. And hell, more than most friends with issues.
Mainly because I have walked in their shoes for a mile and I don't like it, not one freaking bit. I am prevailed and acknowledge it. Next time you see that whiney sick mate complaining on Facebook, don't tell them to pull their socks up. Offer to take the party to them or just listen. And don't be a dick.
Bring on Thursday two weeks away.

Almost complete obliteration

The, the past month, five weeks has been tough.

No movement on a consultant appointment, three weeks off sick, read the x-ray report and played with lots of medication. Time for a catch up!

Things have been going down hill for a while, stress migraines popping up, lots of pain killers, still just paracetamol and ibuprofen and curtailing life in general. Jobs taking longer, rests are longer and I generally have felt pretty low. We had the Victoria tube line interrupted because of engineering work, this meant a longer, more crowded commute and having to use my cane a lot more than I would like. Work knew but really, the understanding of my commute and the knock on effects were not there. This was frustrating. The pain levels increased with the commute and my mood plummeted. Even when the commute went back it, the body didn't bounce back.

Exhausted, in pain and depressed, I took some sick leave, citing hip pain but also out of cope. I figured some better painkillers were needed. A phone call to the doctors to sort that out and in that conversation I was told the xray report. That there is almost complete obliteration of the joint space. Obliteration, not a word you want attached to your body.

That was a gut blow, I cried a lot, I cried at my supportive boyfriend, I cried into my cat's fur as they lay in a cat puddle, twisted together. The brave face cracked. I realised work was a part that had to be taken out of the equation. It was not helping in the physical management and I desperately needed head space.

After a week, I physically saw a doctor and he signed me off work for two weeks. Also told me to up my new medication,naproxen and prescribed tramadol. He also said chase the consultant appointment, because over a month was certainly enough waiting.

I did that, and spoke with two people at St George's who said they would call me back, but didn't, I did give them a week each to do this.

So, the third try it was recommended I contact PALS, which I did.  More on that outcome later.

I returned to work and had a meeting with my line manager and his manager, I explained the drugs and generally that sitting all day and the commute is killing me.  I have said the same thing to Occupational Health and they have backed me up with a report suggesting one day a week working from home.  This would break up the tube travel which I am finding increasingly difficult to deal with, it hurts to sit and stand on the tube and the sheer amount of people is nuts and they knock into you!  I have a meeting next week to see if the team can do that, if they can't I am not sure what to do.

One positive has been a sports massage that seemed to loose a lot of the muscles around the hip and in my back that has reduced my pain, a lot!  Swimming is still helping but currently shopping for slip on shoes! Such an old lady!