Today we had an appointment with the doctor. It was to discuss the sensory disturbances TJ has been experiencing over the past year or so, sensations which are getting worse (not better) and becoming more and more unbearable. They have come after many, many years of intense chronic pain, which has had a maasive impact on TJ’s personal life and our life as a family.
To explain how big this has been for us, I need to backtrack to the beginning. So bear with me.
In 2008 TJ and I moved in together. He had already been suffering from painful arms and hands, which meant he was struggling to keep up with the physical demands of his plumbing work. Just a few weeks after we moved in together he lost his job. It was hard. We were living in Cambridge on my incredibly low income (childcare does not pay well!) and so the hunt was on for us both to find new jobs. I moved to the Tourist office, easing the pressure off us a little bit, and Tim eventually retrained in healthcare and took on a role which was far more supportive than physical.
Things should have picked up, but I was going through my own health issues and in 2010 I quit my job due to discrimination over my health. We were back to a single income and had to relocate to survive – and the pressure fell solely on TJ to provide for us, all while he was in intense pain himself. It was tough!
Between the two of us, health issues have severely limited our financial stability. Changing careers has meant TJ has repeatedly had to take a pay cut to start at the bottom of the ladder. And I have been unable to work full-time hours since 2010 due to first my severe pregnancy sickness and then balancing work and childcare for Little Man. We’ve struggled more than we would care to admit, and the financial stress is just the tip of the iceberg when looking at the difficulties we’ve had to face together.
The worst, for me, has been seeing TJ suffer from depression due to a combination of the trauma from my pregnancy and the fact that being in pain every single day just wears you down. I’ve been in that place myself and I know it is an awful place to be. And the reality is I would rather be there myself than see someone I love so much fall into that hole. There is nothing I can do to stop the pain and that hurts me more than I can say…
In fact, seeing TJ in pain and struggling with even simple tasks just breaks my heart. I’ve dealt with pain before and know my own limits and how I cope with that. But seeing someone else in so much pain is a whole new experience for me and one I find incredibly hard to deal with. Am I supporting my husband enough? Am I giving him what he needs to get through this?
I feel like I failed in that last part quite spectacularly these past few months. I was so caught up in dealing with all the other things in our life (issues with childcare, financial worries and needing to find a new/second job etc) that I just didn’t stop to wonder why certain things were happening. I’d get cross at TJ for always leaving bits of food on the plates he washed up or for putting clothes that were still damp into the wardrobe. It just seemed like he wasn’t trying. But what was really happening was that he was struggling to actually feel what he was doing… and once he told me that it scared the hell out of me!
We were in the car one day and he suddenly blurted it out. “My hands feel numb… I have an intense itching in my arms, and pins and needles in my hands, and I can’t quite feel the ends of my fingers”. My mind went into overdrive thinking of all the things that could cause this, I can tell you.
We went to see the doctor not long after that. We discussed the fact that over the past 5 years TJ has tried multiple painkillers, all to no effect, and that he’d had to change careers twice and was now struggling in day-to-day things and his symptoms had begun to progress from pain to sensory disturbances. At that point it was just his hands, and so he was referred to the hospital for nerve conduction tests. That appointment was 19th September (Little Man’s birthday) and his nerve conduction test was on 16th October (the day after our 3rd wedding anniversary and my handover day for my new job). Let’s just say there was a fair amount of emotional confusion on those days between both happiness and worry, relief and concern. It was pretty intense.
But it didn’t stop there. The following week TJ’s discomfort continued to increase and he admitted that he had similar sensations in his feet. That was when I really panicked. If it were just in his hands, maybe it could be something simple like Carpal Tunnel… but if it were in his feet as well, well then we could be looking at something far more serious.
We saw a nurse practitioner that week out of desperation. She confirmed our fears – this could be neurological. She mentioned a wide range of things that could cause this kind of pain, none of them very reassuring. She advised us to make an appointment to see the doctor again. And so that is what we did…
Today we saw the doctor. She said TJ’s symptoms do not follow any “textbook” examples, but then not many people’s symptoms do to be fair. She’s ordered extensive blood tests (tomorrow) – TJ has had blood tests done twice before but this time she will be checking for things which could affect the nerves. His nerve conduction test results have yet to come through, so she is chasing those. He sees her on 14th November for the results from both. At that point we decide whether he is referred to neurology or not.
And until then we wait. We wait very impatiently to find out what is causing so much pain and discomfort that TJ is struggling to do simple tasks like wash the dishes. We wait impatiently as the discomfort keeps him awake at night and gradually breaks down his barriers and his mood plummets. We wait impatiently until the 14th November when we still may not get any answers. And I won’t even be there to go with him as I’ll be at a conference.
I’m not sure my heart can wait… my husband is hurting badly and there is nothing I can do.