In my last blog I talked about psyching myself up to go and see my GP, I’ve been working really hard at using a variety of coping strategies to control my pain and make the most out of life, but these have really been failing me of late and I have felt that the treading water I have been doing is no longer enough and that without some sort of buoyancy aid I will be falling into the dark, depths of despair at the bottom of the ocean!
The last visit I had to my GP did nothing to help allay the fears and in fact added about another 50KGs to my ankles to try and keep afloat. The incredible extra pain I have been having of late is a result of a number of muscles being in spasm in my back, putting increased pressure on some of my nerves. As a result instead of managing to decrease the amount of tablets I take Diazepam has now been added into the mix. I now am hallucinating more frequently, thinking of things I need to say to people and saying it out-loud even when they’re not with me, and the constant dropping and throwing things when my hands decide that they don’t want to work or my spasm jolts me like an electric shock to my spine. As if this isn’t enough my GP goes on to tell me that with this latest mix of meds under the new Drug Drive laws she considers me unfit to drive – great add 50kgs in weight to my ankles to pull down just a little further, whilst taking away that last piece of independence and dignity that I had been clinging on to!
Some light relief this week was in the form of my support groups monthly meeting. It is an opportunity for a number of people who suffer from Chronic pain to meet and talk about their experiences, learn new coping strategies, and have an opportunity to get together and remember that you are not alone (I will blog more about this in the future). For which I was very thankful to a good friend Jeremy for coming 40 miles out of his way to get me there and back.
Putting a dampner on my meeting was a phonecall from my specialists cancelling my appointment for next Wednesday and rescheduling it for the 22nd July L This was an appointment at the Opiates Clinic and was going to be an attempt to try and secure a bit more pain relief having unsuccessfully trialled changing the levels and types of other meds that I am on. I’ve been using mindfulness preparing myself for this appointment as it is for a change in my opiates meds to methadone, and the stigma that this drug has surrounding its use for other treatments and not chronic pain for which I will be taking it for. It has taken me a while to get my head in the right place to make the change and the change has been a long time coming! Furthermore this cancellation was now the second cancellation in as many weeks, firstly my mindfulness course being postponed indefinitely and now another month of pain controlling me and not me controlling my pain before I can start trying something else. There goes another 50kgs being added to my ankles. I am now firmly underwater sinking further and further from that chink of daylight and spiralling. They say it never rains it pours and despite the seasonally good weather it has really felt like this of late.
To add to my physical pain and general down feelings I have the guilt of feeling that I have not been there for my wife as much as I should have been because of all the drugs and sleepless nights I have been having. This said Thursday really brought home to me the power of my support network. I had been feeling that I hadn’t been there enough for my family as my wife’s maternal Nanny passed away recently and Thursday was her funeral. It always sounds a daft thing to say but it was a lovely service and a gloriously sunny day that Nanny would have enjoyed. Throughout my wife’s and her family’s grief they reminded me that when I felt like I was sinking most was when I had most buoyancy around me. Despite their grief throughout the planning of the service, committal and wake I was thought about. What I all too frequently see as my disability defining me and holding me back from doing so much my in laws just accepted and ensured that I could be there with them all. A parking space directly outside the church was reserved for me, and ramps were put down to help me getting in to what was a small but beautiful Saxon church. It was arranged for me to be driven graveside for the committal and the place where the wake was held was all on one floor with excellent disabled access and facilities. I realised that even with everything going on for them I wasn’t considered a hindrance and was fully included in the day. All those things that were pulling me under suddenly seemed lighter, the weights were not being carried alone, the burden wasn’t being carried alone and most importantly I was reminded that even when you are dealing with undoubtedly the most difficult emotion that you will encounter that with the right support around you, you can conquer all.
The week undoubtedly had that sinking feeling until Thursday, when it dawned on me that I am never in this alone, my pain may currently be controlling me but my disability doesn’t define me, my support network is vast and keeps me afloat even at the darkest times.
To further remind me that even when I feel that I am drowning others will carry me through my family and friends continued to step up and support me. My parents as they always do help with childcare and food preparation, a taxi service, take me to all my appointments and help me when my wife is at work, as do others. Friday, exhausted after the physical and emotional aspects of the day before I was looking forward to a relaxing dip in the hot tub. I got up early and checked the water and our very good friends N and A came over to help me with our LG as I miss not being at home with her. You know you have real friends as family when they leave you soaking in tub and not only bring stuff for lunch but go into your kitchen, prepare everything, make you drinks and plate stuff up for you. Wednesday I wanted to throw in the towel, by Friday I felt like a phoenix raising from the ashes……………………….