Sadly no, my partner's not okay

My partner and I met and became a couple in 1985 when we were both 32 years old. We got married in 1989. Since 2006 she has been unable to work due to health problems. For the last two years she has been homebound, spending the majority of the day in bed, in various degrees of pain and discomfort, only leaving the house for medical appointments. For the purposes of this website I will call her CC.

Most of our friends and family know CC has not been well for a long time, as do some of our neighbours and people with whom I work.  This means I am often asked questions like these:

• Is CC okay?
• How's CC today
• Is CC doing any better? 
• How's your wife doing these days?

These questions are indicative of concern and empathy and as such they are much appreciated. However, I have always found it hard to provide answers that are at once accurate, brief, and helpful. Too often I have given spur of the moment answers that are so incomplete as to be inaccurate; or so long as to be socially awkward. Those answers are not helpful to my partner, or to me, or to the people who are concerned about her and me. 

That is why I have written the following description of how my partner is doing. I am sharing this — with her permission — so that people whom I already know, or those that I may meet in the future, can better understand my partner's situation and mine. It is also possible that some people facing similar circumstances may find it helpful to see this approach to what is a widespread and inherently challenging situation: how to communicate the suffering and burdens created by incurable and under-treated illnesses.

----------------------- How is your partner is doing? -----------------------

Most mornings, my partner does not get out of bed. She doesn’t get out of bed most afternoons or evenings either. It’s not that she physically cannot get out of bed, but doing so is painful and very tiring. However, staying in bed is not a reliably comfortable option. She regularly experiences headaches and muscle pain.  

It doesn't help that when she wakes up, my partner often has abdominal pains and feels like vomiting. So the first thing she does most mornings is try to calm the feelings of nausea and address the pain. She does this using meditation, breathing exercises, and medication. About three mornings a fortnight she does vomit. On most occasions the emesis is just bile, but sometimes it is what she ate the night before. 

On most days, about an hour or so after she wakes up, my partner is overcome by a feeling of extreme tiredness and mental fogginess. We refer to this as "the shutter coming down." This makes it hard to read, write, or have a conversation. Some days this clears up for a couple of hours later in the day. 

During the day, but more often in the night, my partner has  episodes of extreme sweating. When I check on her first thing in the morning it is not unusual to find a small pile of very damp t-shirts to be laundered and a pillow or two that need drying out. 

Thankfully, my partner can still walk, although it is painful to do so. She can manage the 10 or 12 steps it takes to get from her room to the bathroom, provided she uses the banister for stability. (As a former surfer and sailor, CC gets very frustrated by the deterioration in her sense of balance.) She often needs a moment to recover after a round trip to the loo. Fortunately, she can still wash and dress herself, although sometimes the latter requires assistance as it can be a struggle given her limited stamina.

Our house is a modest two-storey English semi. Her room is upstairs and she can get down the stairs, but only if she does it facing the stairs and steeling herself against the joint and muscle pain. She goes up the stairs on her hands and knees. Sometimes she goes days between trips down to the kitchen and living room. 

She has a fridge and tea-maker in her room. However, she has very little appetite these days and seldom eats a substantial meal. The last time we went out for a meal was on our anniversary about two years ago. In those two years she has twice tried to attend family meals at a restaurant but had to leave after about 45 minutes due to fatigue and that shutter coming down.

-------------- Do you mind me asking what's wrong with your partner? --------------

No I don't mind, and it is natural to want to know the answer; but I find it hard to give a useful one. If she had cancer, I could say "she has cancer" and for many people that would suffice. She does not have cancer. She does have multiple brain injuries, fibromyalgia, and haemochromatosis. 

Often my "what's wrong with her" answer stops there, depending on who is asking. The number of people who understand the implications of all three of those conditions and what they can do to a person is relatively small. On the other hand, there's a good chance that most people will recognize at least one of the three as painful, incurable, and potentially disabling. (All three can be all three, and yes, to the best of our knowledge, my partner's painful and disabling condition is incurable.) 

If the person asking about my partner is medically-aware I will add that she also has giant cell arteritis, something which can cause blindness and death if not caught and treated in time. (We are extremely grateful to the optician who first spotted this.) Unfortunately, the treatment for GCA can have side effects similar to some of her symptoms.

The fact that it is difficult to explain exactly what's wrong with my partner is indicative of several larger problems, like determining which conditions are causing my partner's symptoms so that she can be treated appropriately. And of course, it's not just a communication problem for me, it's an almost existential problem for my partner, not to mention a professional challenge for any medical professional who attempts an answer (and very few seem to have the time, capacity, or inclination to do that).

In the grand scheme of things, and I don't mean to be flippant or callous when I say this, there are 'benefits' to being disabled by a well known or highly visible medical condition. 

-------------- What's next? --------------

The above description of my partner's condition will be updated if there are any significant changes. I may also add a more complete list of symptoms and conditions on a separate page because some of them were omitted from this page to make it more manageable. 

At any given time, you can assume CC is experiencing some or all of the symptoms presented here, so it is hard to say she is okay in anything other than a relative sense. However, your interest in how she is doing really is appreciated.

Naturally, some people will wonder what doctors are doing about my partner's health. I may write about that next but the short answer is "nowhere near enough." Sadly, this has been true for many if not most women, from childhood to old age, in every country I know of. 

Nevertheless, at some point I will try to describe what has been done for her as well what should have been done. To organize this and make it easier for people without medical training to grasp, I plan to put up pages about each of these four conditions: brain injury, fibromyalgia, giant cell arteritis, and haemochromatosis.* Each one can cause mental fogginess, disturbed sleep, pain, and extreme fatigue. 

I probably won't do a page called Chronic Fatigue despite the fact that my partner has been chronically fatigued just about every day for the last 10 years. Sadly, due to years of unethical efforts by some truly disgusting ego-driven men of medical science, the phrase chronic fatigue has been tainted to such a degree that even saying it risks undermining the empathy of the average citizen.

-------------- Not The End --------------

*Note: the type of haemochromatosis that my partner has is genetic haemochromatosis, also known as hereditary hemochromatosis.