Perseverance

It’s been a busy morning and a relaxing afternoon. Here is a snapshot of what my life is like right now. It’s not really about enjoyment, it’s mostly about perseverance, pain management and strengthening:

Today:
– awake by 6.30am
– guided meditation in bed (30mins)
– breakfast (poached eggs… yum)
– bus to swimming pool (painful but doable)
– first swim in ages, did 10 super quick lengths in the pool as I was running late. Even managed to do 2 lengths with very gentle kicking!
– taxi to osteopath
– osteopathy treatment (magic, as always – my osteopath is really good)
– taxi to hospital for appointment with pain psychologist
– picked up a new hoodie (none of my clothes fit) and few bits of groceries near hospital
– taxi home for lunch
– call doctors, ACC, Bowen Hospital and the pharmacy to sort out various health related things.
– In PJs and resting in bed by 2.30, watching a French documentary about teaching kindergarten kids philosophy

It’s now 6.30pm and I’m thinking about dinner. I need to do my physio exercises and will try be in bed asleep by 9.30pm. I’ll try do a meditation or yoga nidra before bed as I’m still not sleeping that well, it’s been 3 months now since I last slept well without the aid of medication. I’d really like to find a way to sleep naturally again. Sleep is so important right now.

In general I’m feeling a lot happier and more relaxed yesterday (yesterday was a really rough day). I’m now very tired/sore by today’s outing but the good news, a lot of the pain I’m in is a good pain – the pain of re-building muscles/strength in my hips/pelvis. 🙂

My pain psychologist was very helpful and while I’m still confused about what the doctors are telling me, I’m so very very tired of fighting the health system looking for answers/clarity. I’m not giving up, I’ve simply got to go back to taking it ONE DAY at a time.

I think I was thrown off centre and a little shocked to be given another two months off work by the pain specialist. It changed my thinking about recovery from days/weeks to months. The conversation with him wasn’t at all reassuring. I just want someone to tell me why this keeps happening and help me prevent it from happening again. I’m scared I’ll recover only to have another episode of “acute chronic pain” requiring hospitalisation and months of rehabilitation.

But there is little point worrying about the future. Its time for perseverance and patience. I’ll get there, and I’ll be happier and healthier for it.

I bought myself flowers:

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I hate chronic pain

I rarely use the word ‘hate’ as its such a strong and negative word. But I hate chronic pain. After seeing the pain specialist today I feel like a shitty car that’s “too hard” to try and fix. Fingers crossed my body will fix itself with time, rest and strengthening.

Today I was given another 60days off work. This seems ridiculous but I’m still in a lot of pain and have a long way to go with the rehabilitation. Slow and steady wins the race… I hope so anyway.

The pain specialist dismissed me with a vague diagnosis of “central sensitisation” which I’m pretty sure is a fancy word for chronic pain. All I understand from what he said is my nervous system is not working properly. I asked him directly if it is CRPS (as suggested by surgeon) and he wouldn’t answer my question. He, like everyone else, is telling me to do everything I’m already doing and have been doing for months. He changed my meds and sent me back to my GP.

I am seeing my pain psychologist on Thursday and GP on Friday, fingers crossed they can help me understand/accept this diagnosis even though it doesn’t explain half my symptoms. I go into hospital with a sore hip joint and come out an absolute mess. It’s hard not to be angry, especially as I was asking for help with the chronic pain for months before I ended up in this mess. It’s like a car crash that was totally preventable.

In a few days it will be the 3rd year anniversary of injuring my hip. It Is a horrible moment in time I wish I could go back and change. Alas, the past can not be undone. I can’t believe how a stupid gym accident has turned my life upside down. This has gone on too long, it seems wrong for a 33 year old to have this much hip pain. I haven’t been for a decent walk in well over a year and I am starting to loose faith that I’ll ever be able to get my old lifestyle back.

Tomorrows a new day… I must stay positive and keep moving forward. I’m a fighter and too stubborn for my own good, I can get through this. I may not be able to do kickboxing or spin classes again, but I’m sure I’ll be able to walk again. My expectations have been significantly lowered this year, with a bit of luck/determination my body will exceed these lowered expectations!

An update with my feet up!

Quick update because I haven’t been online in a while. I’m doing ok but still struggling to use the computer because I’m still having issues with headaches. I’m trying to build up my computer tolerance, just like I’m trying to build up my strength in my lower body. Slowly but surely.

Great news, I’m starting to walk around the house with one stick and am starting to wean off the crutches. It may take a while because I’ve been on them so long but I’m making good progress. At this stage I need two for going on outings and when I get tired/sore, usually at the end of the day.

I’m having a day at home today. The combination of trying to perform in a concert, weaning off crutches and starting physio therapy has flared up my pain somewhat. To be expected, but not fun. I’m seeing the pain specialist tomorrow which will be interesting. I’m a bit nervous and to be honest, I feel like all my eggs are in this one basket. I really hope this doctor is able to help me as I’m tired of being bounced around the hospital system and need some sort of diagnosis/plan forward.

What else… I broke my toenail a couple of days ago which not only disgusts me but adds to the pain in my left leg. I am not sure how I did it, but am now missing a decent chunk of toenail! Eugh, broken nails have always creeped me out. It will grow back so I’m not worried, it’s just “another thing” to deal with. It only really hurts when my feet are warm so it’s not a big deal. More amusing than anything.

Ok, best I go. Here’s a photo of me with me feet up today. I have been enjoying the sunshine, as you can see lefty is still a slightly different colour to righty.

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Homework from the physio – swim + sauna

I saw my physio last week, we had a lot to catch up on as i had only seen her once since before the new rehab programme and I was in crisis mode back then. She didn’t have time for a treatment but gave me two things for homework. She said to try swimming (no legs) and try a sauna.

The swimming went well, it felt so so good to move and get some exercise. I only did 10 lengths but it was a big achievement. The pool I use is salt water and a few degrees warmer than the average pool. I used to hate swimming (boring) but now I enjoy it. I guess it’s a case of taking from life what I can, I can’t walk far at the moment, but I can swim.

The sauna didn’t go so well. My instinct was that the sauna might not be a goer as for some reason heat makes my hip/thigh pain a lot worse. But, as my physio explained when your body is in acute pain it creates chemicals and the sauna can be helpful to release them. Also I also LOVE heat, so I knew a sauna would feel good. And it did. Until I got out, and then it made the pain worse. And now today I’m in a lot of pain, I’m exhausted and my body feels stiff. But… The silver lining is my skin has cleared up.

I haven’t written off the sauna yet, I’m wondering what would happen if I had a sauna followed by a swim. Hot followed by cold, not to dissimilar to showering followed by ice. Will talk to my physio about it tomorrow when I see her to hand in my homework!

Salad, sunshine, sadness and disability

Today I went into the city to get my ears cleaned out. I’ve still got a massive headache and nearly cancelled but glad I didn’t as I’ve now got my hearing back in my right ear. I didn’t realise how blocked it was until it was cleaned out.

I’m feeling a bit rubbish at the moment, my hip/leg is healing and settling down but I’m feeling fed up, frustrated and a little sad. I’m tired of the crutches, tired of not sleeping well, tired of feeling socially isolated and tired of the pain. I’m scared too, the hip pain I can handle, but I’ve never had headaches or pain/numbness in my head. I’ve always been able to multitask, read and use a computer for hours at a time. Even watching TV is a struggle for me right now. I thought these headachy things would pass, but it’s taking longer than I expected.

I’m very much looking forward to seeing the pain specialist next week as I’m hoping he will work out what is wrong and formally diagnose me. But I’m scared too, I’m scared he’s going to tell me I have CRPS, I’m scared I’ll be told to continue to “manage” and “cope” with the pain and disability. I’m scared this is something I’ll have to live with my whole life.

Disability – I still have trouble saying that word. I really don’t want to be disabled, but that’s what I am right now. Nobody wants to be disabled. Even if it’s just temporary. I’m still hoping this is temporary.

Some photos from my adventures so far this week. I’m trying to make sure I go for one walk a day, get sunshine, take photos, sing, meditate and eat well. I believe these things are the best medicine. Much better than the drugs I’m on anyway.

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The hospital diet

Today I had my first swim in almost 2 months and it felt soooo good to be in the pool. I’ve been lugging myself around on crutches, so floating in the water was absolute bliss.

On the way home from the pool bought a new new skirt as most of my clothes don’t fit me anymore. While in hospital I had a bad reaction to the medication and lost 10kg. I’ve since put on a few kilos (which is good) and I’m getting stronger and stronger everyday. Who needs the gym for an upper body workout when you’ve got crutches!?!

Here’s a photo of my new skirt (size 10) and my old skirt (size 14):

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