We have a sofa being delivered today. Ordered three months ago, to the day, it is much anticipated by human and canine members of the family. It will replace the old sofa and armchair that we shlepped from the US with us 6 years ago, which are literally falling apart. Nonetheless, my feelings about the new arrival are more ambivalent.
I know that the new sofa will be more comfortable, and will definitely smarten up the look of our tiny, cottage living room, but... I am worried. Not just about whether it will fit in the spot we have designated for it, but how we will rearrange the other furniture around it, and the logistics of disposing of the old sofa and armchair.
You might consider that a mundane problem, maybe even a good problem to have... 'oh, the poor thing... she has to worry about how to fit her nice, new sofa into her lovely little cottage when others don't even have a home to live in.' You would be right, of course, and I remind myself of this as I sit here, worrying. But I still don't know how we will manage it, and the delivery is due in about 3 hours.
I have a new layer and perspective on this worry, that would not have been present before this year... I know that I will struggle to physically be able to move much furniture around. I also know that whatever energy I expend on moving furniture will likely leave me depleted for any and all other tasks that I need to get done today. Like making the pumpkin pie that I promised our American boys for our belated Thanksgiving celebration tomorrow. Like making dinner tonight. Like being able to move at all when I get out of bed tomorrow morning.
The nasty voices in my head want to dismiss these worries with a constant stream of snarky cynicism. They berate me with how I am just making excuses, that I am lazy, and that I should just get on with it, and get myself moving. And that I should also finish that novel I have been meaning to write, redecorate the rest of the house, and broker world peace in my spare time while I am at it(!). The nasty voices in my head have always been hard taskmasters. But recently, their cruelty has become more pointed, and harder to bear, as their criticism of my inability to get out of bed most mornings has come to sound more reasonable. Why can't I get up? Why are my back and feet always so sore? Why do I keep dropping things from my sore, swollen fingers, especially first thing in the morning when my hands are usually numb? How is it possible that I can sleep until noon, without even changing position in bed, and then be still tired for the rest of the day? Or when I do get up and start my day, something as simple as taking the dogs for a walk can leave me exhausted and aching for days afterwards? I don't recognise my body, and feel a sense of alienation with it. I feel imprisoned by it's limitations, and angry with myself for not being able to shake it off.
The nasty voices don't like to let me complain to other people much, but eventually I did talk to my doctor about this. In fact, in looking back over my medical records, I first talked to a doctor about my sore, swollen fingers about 18 months ago. Just early osteoarthritis, he said. Wear and tear in an aging body.
Then I saw a doctor earlier this year, when I had debilitating fatigue for days after going for a run. "You're pushing yourself too hard," he said. "Just back off a bit, and take it slower. You're not as young as you used to be."
So I stopped running. Then, I started to notice that even a long walk left me worn out for days. Then, I started to have days when I could barely manage to get the dogs outside at all without collapsing into a heap for hours afterwards.
I saw doctors about my recurring plantar fasciitis (foot pain from inflamed fascia) years ago, when I was running a lot more. Despite all their suggestions, it seemed to come and go with no correlation to the orthotics, painkillers, different shoes and lifestyle adjustments. For the last year, it has come back much more persistently and painfully, to the point where I could barely walk first thing in the morning, and would be in tears at the end of the day. I had stopped mentioning it to doctors, since nothing they had ever told me about it seemed to help.
Then, I noticed a few patches of red, raised skin plaques. I didn't think much of it... they weren't really bothering me. Just a bit of an eyesore. But between COVID and my other physical limitations, it's not like I had much of a social life and so my appearance was not high on my list of concerns. Eventually, they started to itch a bit and would not clear up, so I called the doctor again. The receptionist made me wait to talk to the GP in the practice who had an interest in dermatology, and she asked me to send her pictures of the lesions, due to COVID-related social distancing. She only works two days a week, and so she did not get back to me right away. But when she did, she said, 'it's psoriasis.' She sounded surprised that I did not know this.
"Have you not had psoriasis before?" She asked.
"No."
"What about family? Has anyone else in your family got psoriasis?"
"No." I racked my brain for any mysterious skin lesions mentioned by family members.
"It usually runs in families," the doctor assured me, as if I must be mistaken. Then she said something that changed everything. "And it can be associated with psoriatic arthritis. Do you have any joint pain?"
"Well, my fingers have been very sore recently..." I said, cautiously, not wanting to whine too much. "But the worst pain I've been having is due to my plantar fasciitis, which is obviously not joint-related."
"Actually, plantar fasciitis can be a sign of psoriatic arthritis," she said, casually.
After we'd spoken, I went to Dr. Google. There were lots of images of severely swollen, sausage-like fingers and toes, and extensive, angry red skin lesions all over anonymised bodies. That couldn't be right... nothing I was experiencing was that bad. But then I found an account from a psoriatic arthritis (PsA) sufferer who had presented with unremitting plantar fasciitis before any other signs appeared. Apparently it was possible to have PsA before any psoriatic skin lesions were present, and, in some cases, the skin lesions never appeared.
Finally, I was referred to a rheumatologist. One of the advantages of where I live is that there is a high concentration of specialists and world experts associated with the university. My rheumatologist is no exception, and he specialises in PsA. After about 20 minutes discussing my history and physical symptoms, he confirmed that it was highly likely that I have PsA, and probably have had it mildly for years. There are no definitive tests, although part of his research is looking for blood markers. The best way to confirm a presumptive diagnosis is response to treatment, which I will begin next week.
The various general practitioners that I have seen over the years, while initially sympathetic, have had a tendency to be quite dismissive of my reported signs, especially once any bloodwork they ran was within normal limits. Depression and peri-menopause are the catch-all diagnoses for a woman of my age and presentation. I don't blame them for that. PsA is not well recognised or understood, even by medical professionals, and it is hard to diagnose in it's early stages. But I do feel frustrated at how easily my doctors and I colluded to convince me that there was nothing really wrong with me, despite what my body was telling me. I believed the depression diagnosis in particular, because being tired and painful does make you depressed, and because I believed I must be a little "crazy" to keep thinking that there was something wrong with me when medical science could not find anything. I don't think it is a coincidence that it was only once I had visible skin lesions that a doctor took my concerns more seriously, and was willing to dig a bit further. I also suspect it may not be a coincidence that that doctor, who looked back over my whole medical history in search of a holistic answer, was a woman.
That is not to say that I think the other GP's were consciously dismissing me because I am a woman, but I do believe that all of us, myself included, were less likely to take my signs seriously because I am a woman. Unconscious bias is powerful in all of us. And even now, as I feel the relief of validation for how I am feeling, I still struggle to give myself permission to rest when I am tired. So today, I am worrying about the new sofa, and how we will find a way to make space for it. And I am struggling to be kind to myself and admitting that getting the new sofa installed may mean that I won't be able to do much else later in the day. I am, like many of us, a work in progress. A work in progress with psoriatic arthritis.
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