Standing at the entrance of a cave

I’m in a bit of a funny place right now. For years because of the chronic pain I’ve felt like I was living life from the sidelines. I felt like the world was going on without me and I was treading water on a daily basis just to function. For a long time I was envious of people who could walk, sit, sleep and stand without thinking about it. Now that I’ve almost fully recovered from hip surgery and from CRPS, I feel like I’m at the sideline and about to rejoin the game of life. It’s a wonderful feeling but its also a little scary. Over the years I’ve lost confidence in myself and I worry more than I used to. This is understandable because I know from experience that bad stuff does happen.

All of this hip malarky happened in one second because of a silly accident at the gym, I remember that moment clearly. I got hospitalised with CRPS twice because of a perfect storm of events. I know that something as minor as going sailing and walking home can trigger the most excruciating chronic pain you can get. Pain worse than unprepared childbirth, cancer and amputation (according to the Mc Gill Pain Index). I know how to avoid another CRPS flare and I am very confident I have the skills to ensure it will never happen again. But fear of CRPS and hip pain is still with me and casts a shadow. As time passes I’m sure that shadow will fade.

I’m very excited to get back to an active life, but I’m more cautious than I used to be because I have a fear of it all happening again. But I can’t live a life in fear, I need to put this behind me and trust that everything will be OK. I’ve moved to London to get away from old associations and make a new life for myself, its not as easy as I expected but it is exciting and full of promise. I’m at the edge of the cave and there is treasure inside, it will be 100% worth facing my fears and working through what I’m feeling.

The cave

This image is from Facebook, source unknown.

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Expectations, a recipe for disappointment

Latest update from India. It’s been a rough couple of weeks. I’m feeling a bit disappointed, for some reason I thought if I stayed here long enough I’d get a piece of my “old life” back. I think this was a mistake, there is no going back and I’ll never be the person I was before CRPS & my hip problems. I’m a lot healthier though, I’m sleeping better and I can walk. Surely that’s enough? I can’t believe that being able to walk is an accomplishment after 4 months of yoga therapy. But I’m feeling I can leave my crutches behind and that’s a HUGE deal! Something to be very happy and proud of, so why do I feel sad? 

I guess I’m on the slow and steady path, my instinct is telling me to get back in the pool as my body is actually quite sore and I’m not enjoying the yoga anymore. I feel sad to leave Mysore as I don’t know if I’ll come back, things are different here – but everything changes and evolves, this is life. One door closes and another opens. I don’t feel I fit in with all these super-yogis, I look at them doing the crazy stuff I used to do and wonder… what’s the point? Why do I want this? Prana Vashya is a beautiful practice, but it’s been out of reach for a long time… I think it’s time to just let it go.

A little pre-op hospital tour

Today I had a little hospital tour to try and desensitise my fears around hospitalisation prior to my operation. I’ve had a few terrible hospital stays so have developed quite a phobia of the place. The lovely nurse from the pain clinic gave me a tour (I followed her around while she did a few jobs) and I’m now feeling A LOT better about my stay there… phew.  I was feeling very nervous about the idea of the visit, but once I was there it wasn’t so bad.  I used mindfulness techniques to calm myself down and it worked a treat.   I’m now feeling 98% ready for this operation and am looking forward to getting it over and done with!

Today I was shown the waiting area for pre-op, the rooms where you get ready before the operation and then we went up to the ward.  The plan is for just one night in hospital and they have put measures in place to plan around the CRPS and ensure the pain is well controlled before I go home.  I think the hardest thing about being in hospital is the fact that I have to take a back seat, not something I’m used to doing.  I can’t control what happens when I’m in hospital and I can’t control how I get treated. All I can do is be mindful about how I react to the situation. I have to trust the surgeon and the hospital staff have my best interests at heart, and that I will be OK.

After today I’m feeling ready for my surgery, calm and relaxed.  Now I just need a DATE!  Agh, waiting lists suck.

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A very successful pre-op assessment

On April 30th I had my pre-op assessment.  I was a bit nervous about it, but had no need to be.  The hospital staff were lovely and my concerns about the complex regional pain syndrome (CRPS) were taken very seriously.  It ended up being a day of back to back medical appointments, pre-op assessment in the morning, physio in town, back to the hospital for x-rays and then pain clinic in the afternoon!

The morning of pre-op assessment involved getting key measures taken by a nurse, a meeting with the anaesthetist, then the house surgeon, another chat with the nurses and then blood tests.  Given my history of ‘suspected CRPS’ (crazy stupid pain) I was most concerned about the pain management aspect of the operation.  When I woke up last time the pain was bad and that caused a bit of chaos, the pain wasn’t well controlled post op and I ended up having to stay a 2nd night in hospital because of it.  Since then it appears I’ve developed CRPS and I’m afraid of another flare up of that, CRPS is horrible and takes a long time for me to bounce back from it. The anaesthetist was brilliant, he’d clearly read my file and took the time to address my concerns and even answered the questions I had about CRPS.  The suspected CRPS is pretty much confirmed CRPS now, but I’m grateful my symptoms are under control and pain levels are manageable. It turns out this is a condition that I’ll have to live with, but once the hip impingement is addressed the pain levels should resolve.  Fingers crossed!

The meeting with the house surgeon didn’t go so well, she was a bit of a cow.  She didn’t really know what was going on, didn’t answer my questions and tried to bullshit me. I wasn’t impressed, but it doesn’t matter because she won’t be doing my operation. According to her I’ll be on crutches for a couple of days and shouldn’t need any physiotherapy.   I don’t think so, but will remain cautiously optimistic.

The nurses were lovely, made sure I had a way to get home and someone to look after me for the first 24hours or so.  They gave me pre-op instructions (which in hindsight is very premature I’ve already forgotten what I was told) and advised me they’ll touch base with me the day before surgery.

So that was my pre-op assessment, now all I need to do is wait for a date.  Its been over a month and I would have expected to have one by now, but alas the waiting continues.  I am hoping for early July (would be good timing for work) but aware that it could be anything up to mid September.  Regardless, its something I’ve got no control over so I will have to go with the flow. It will happen when it happens!

Released from the pain clinic!

Ok, I’ve not quite yet been discharged but I have been released from the pain clinic until 1-2 months before my surgery. This is a huge milestone for me and I am really happy. I am another step closer to a life without having to go to numerous medical appointments.  Another step closer to my ultimate goal of being self sufficient again. The plan is to stop for now, then 1-2 months prior to my surgery go back to work through the hospital phobia issues and make sure I’m in a good headspace pre-op. I have a feeling that if things go well I’ll finally get discharged from the service.

I was referred to the outpatients pain clinic by the hospital after my first episode of suspected CRPS in Oct 2011.  I’d had a massive flare up in pain and I tried to help myself, but I got to the point where I just couldn’t cope anymore as the pain was unbearable and I wasn’t able to get the help I needed. I landed up in hospital for 10 days and was put on bed-rest for a month before I started on the long road to recovery.  It took 5 months before I could be assessed by the pain clinic and by then I’d been to India for my first round of yoga therapy which was very successful so I was physically doing much better, but they determined I needed help to manage the pain. The pain clinic assessment was a reality check for me and looking back at early blog posts I can see how far I’ve come since then.

The pain clinic at Wellington Hospital takes a multidisciplinary approach but because I was already working with a physio, surgeon, doctor (GP) and had seen an occupational therapist, the focus for me was on pain psychology.  First I learnt about how pain works, about how to manage it and how to deal with the emotions that come with being in pain all the time.  He even taught me a few mindfulness/meditation exercises which I thought was great, I’m so pleased to see that meditation is being taught within the public health system.  I don’t have much family support and I don’t know anyone in a similar situation to me, so being able to talk about whats going on with someone has been invaluable.

I was doing pretty well until the second round of suspected CRPS knocked me out and I hit rock bottom.  My second flare up was fairly traumatic for a number of reasons, and it gave me and the pain psychologist plenty to work with. Its been over 18 months since then and I’m doing much better. I know my triggers and limits, I am able to manage my pain levels pretty well and I can deal with flareups before they spiral out of control.  Of course I still have my moments, but on a daily basis I cope pretty well with living with this hip pain.  I’ve also made great progress on dealing with the trauma associated with my last hospital stay. We did a few round of EMDR which was very interesting, I was skeptical at first but it really did work. 

Working regularly with the pain psychologist has made a huge difference in my recovery and I’m so grateful to have had access to the service.  I felt terrible at first that I had to see a pain psychologist as it made me feel so broken, but I am glad I went with an open mind and made the most of the opportunity.  If anyone reading this is struggling to live with their long term pain, I highly recommend going to a pain clinic.  Have a look at the services offered by your local hospital and find out how you can access them.  Many have pain management courses as well as the individual consultations.

Desensitisation – a rolling pin to the thigh

One of the more annoying/painful symptoms that scares me a little is the burning pain down the side of my thigh. Some may remember my pain dream where small sharks were nibbling on my thigh and I woke up in pain. Yes, that pain is still there. It got worse after the shark dream and when I was in hospital (and for a couple of weeks after) the feeling of sheets on my leg was too much. I was a little hysterical at times in hospital and wouldn’t let the doctors examine me because it was too painful. Hmmm…. no wonder I’m still lacking a formal diagnosis!

One of the key things I’ve been doing over the last couple of months to deal with this pain is an attempt at desensitisation. I’ve been ensuring I regularly massage my leg even when it hurts, Ive also tolerated clothes rubbing on my leg even though it hurt a lot. Over time the pain has improved and sheets are no longer a problem. Nor is the rubbing of my skirt on my leg.

I’ve started a second rehabilitation programme with a new physio therapist. I mentioned that my quad/thigh has been a lot more painful as I come off the crutches and started the rehab programme. That burning pain in my leg is creeping up in volume.

My homework… Use a rolling pin on my leg to iron out the kinks and work on desensitising the area. It’s more ouchy than self massage but clearly what I need right now.

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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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