Irrational stupid pain

One of the MOST frustrating things about my current condition is the seemingly irrational stupid pain.

I’m getting used to the new sensation in my thigh and can tolerate it now. Its pretty annoying as I don’t know what it is and even light pressure on my thigh hurts. Im ok with the old and familiar groin pain, I’ve been dealing with that on/off for 3 years now. The occasional shooting pains in my butt don’t worry me. And the stiffness in the back of my pelvis and sacrum are understandable.

But what I REALLY don’t like is when stupid little things like the vibration of someone stamping their foot to music at choir ricochets up my leg and causes pain not dissimilar to hot pokers being stabbed into my hip/thigh. Seriously… What is with that?!? It was so bad I actually lifted my leg off the floor, I didn’t have the heart to tell the lady stamping her foot to stop, she looked so happy.

EUGH… I really do wish the pain fairy could use her magic wand and make all of this go away!

I’m reading a wonderful book “Me Before You” by JoJo Moyers. One of the main characters is quadriplegic and reading this book certainly puts things into perspective. I may have pain, but I do have very good function and CAN do a lot of things. It could be a hell of a lot worse!

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Slow and steady progress

Things are progressing nicely.  I’m in a bit of a weird place at the moment when I am doing really well, but then I forget to take it easy and the pain spikes.  I have a tendency to push myself, so its hard not to ramp up the pace now I am feeling better.  For instance, I kind of joined two more choirs, so now have choir practice Mon, Tue and Wed evenings!  I know its a bit much, but I really enjoy singing.  I’m sure its good for me.

I’m on my 2nd week back at work, only working 3 hrs a day but getting a lot out of the time.  So I am feeling rather productive.  I start work at 8am, do physio/rehabilitation afterwards (at the gym) and then go home for a rest in the afternoon.  Often reading or watching DVDs.  This routine is working well for me, it feels nicely balanced.

I am on week 3 of my new rehabilitation program and that is going well too.  Today I managed 5 minutes on the reclined bike, she gave my thigh a good massage and I did some butt strengthening exercises.  We also talked about how to improve my walk.  Apparently I’ve got a mean limp, I drag my leg through and my butt/hip flexors appear to be taking a holiday.  I’ve probably had this limp for a good 2-3 years!

I also working with a pain psychologist at the pain clinic. I think I’m making good progress with him, its hard to tell!  The psychology of pain is so complicated, but I’ve learnt a lot about how pain works and its good to talk to someone about how it impacts my life.

So… I am making good progress but its slow and steady (as it should be).

A little love (heart) goes a long way

Its been a fairly exhausting week with the return to work and second week of rehabilitation at the gym. My pain levels are creeping up and I’m feeling really tired. The weather is very changeable and my system is finding it hard to adapt. At the moment it’s windy and crisp, typical for spring in Wellington. The wind exhausts me and the cold plays havoc with my circulation. My feet are like bright white ice blocks and it takes a hot shower to warm me up to the core.

Today, after a session with the pain psychologist I came home feeling cold, tired and a bit raw. I felt a strong urge to do some yoga/meditation to ground myself and reflect. I am starting to build up towards sun salutations at the moment, while in downward dog I noticed a little love heart on my mat. It’s so cute and a nice reminder to be kind to myself, so decided to leave it there.

Then, this afternoon, after my singing lesson I noticed another stray love heart on my special ‘poppa blanket’ that I often use for shivasana. It made me smile. Another reminder to be kind to myself. Especially after a great singing lesson where I realised I do have a great voice, I’ve just got to let it out. I need to back myself more.

This week, especially with the return to work, I have realised that I’m very very hard on myself. I set myself high standards and am rather harsh to myself when I don’t meet them. And sometimes, I do meet them and I STILL don’t give myself the credit I deserve.

My little stray love hearts have reminded me to be kinder to myself.

It’s a continual internal battle to accept my weakened state, I’m doing incredibly well under the circumstances. Sure I get little wobbles of doubt every now and then, but it’s going to be OK. After 3 years of pain from a seemingly silly little accident at the gym, of course I’m going to have doubts on my ability to heal. But…

It is ok. As it is.
I am ok. As I am.
I will be ok. As I will be.

It will be ok. However it works out to be. The universe is looking out for me.

Photos of my stray love hearts, they’ve fallen off my calendar used to track the ebbs/flows in my yoga, pranayama and meditation practice.

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The gradual return to work

Tomorrow, after eleven and a half weeks off work I’m starting the gradual return. I’ve got mixed feelings but overall I’m looking forward to going back. I think the most frustrating part is the limited hours, next week I start with 2hrs a day! This has been arranged by an occupational therapist and agreed by many. The rule is I can do less, but no more.

I think the hardest thing of all is this is the second time I’ve had to take extended sick leave and do a gradual return to work. I’m just hoping like crazy it will be my last.

The isolation of invisible illness / chronic pain

I’m a people person and I think the hardest thing about the chronic pain is the isolation that goes with it. I’ve made a real effort to remain connected in the world but it’s been hard. Really hard.

I remember last year when I was put on a month of bed rest it was so hard emotionally being stuck at home. I felt like a caged lion, it was horrible. This time it hasn’t been so bad but I do feel like my life has been put on “pause” and everyone is still racing a hundred miles an hour. Sometimes I feel like I just don’t ‘fit in’ anymore. I can’t work out if it’s me personally, modern life in general, my disability or a mixture of all of these factors.

Thankfully I’m getting much better at being in my own company. I’ve also got a few good friends who’ve helped keep me sane, especially in the early days when things were so bad and social contact so important. As my hip pain moved past the acute phase, I went back to my community choir which helped. And being a traveller, I don’t mind sitting in a cafe by myself. So often after my treatments/medical appointments I’ll stop to have a cup of tea, a meal and watch the world go by.

Here is a photo to sum up my feelings today. Like leaves floating down a stream, feelings pass.

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The circular cycle of medication

Today the osteopath did some bodytalk testing to determine how my body is doing physically, emotionally, chemically and spiritually. I was surprised I got really low scores physically and chemically but am doing rather well emotionally/spiritually. I’ve been feeling like crap for the last couple of weeks (kind of dull/flat and a bit lost) so I assumed I was struggling emotionally but it seems I’m doing well on that front.

The physical problems are obvious so we honed in on the chemical imbalance. The conversation went a little like this:

Julia: “So is it the medications?”
Osteo does testing
Osteo: “Nope”
Julia/Osteo both look surprised
Julia: “Oh, so what is it?”
Osteo does more testing
Osteo: “Your bowels”
Julia: “Oh, what’s causing that?”
Osteo does more testing
Osteo: “The medication”
Julia/Osteo both laugh

Yes, the medications I’m on are working well for the pain but they are messing with my system. I know the new drug (gabapentin) makes me feel tired, a little dizzy and I’m sure its also contributing to that dull/flat feeling. It seems it’s also messing with my digestive system.

My poor digestion system has had a hammering thanks to the meds I’ve been taking for my hip over the last few years. It’s no surprise it’s struggling. I’m making an effort to eat well, but it’s not really enough. Id stopped taking the laxatives when I stopped the morphine but it’s clear I still need them. To make things even more amusing, when my digestive system gets clogged up, the bloating it makes my hip pain worse.

Agh, this is why I hate taking medication! But I need medication to get through the rehabilitation and get on with my life. My hope is to get physically stronger and then when the time is right wean off the medications. I really don’t think it’s sustainable to be on this stuff long term.

My evening drug round,minus the syrup and supplements I took with my dinner:

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