We’ve kept a fairly steady, even keel these past few weeks, all considered. Apart from the fact that I am just so very frustrated with how things are happening; the delays in tests I have been awaiting due to weather, the run-on issue of staff shortages and rescheduling due to the snow, then Christmas, and then coming down with a ‘flu that my whole family have succumbed to. I have done as advised and absolutely minimised contact with groups of people where coughs, colds and ‘flu, winter viruses and stomach bugs of all forms will have a much larger knock-on effect on my health due to my liver and immune system problems, but despite these sacrifices by me and those that have passed to my family and especially my little boy, I have just drawn illness to me like a magnet. I’ve lived shut at home, with no air or exercise for so long that I just don’t feel like myself, and I’ve been so ill of late that I haven’t been able to get out of bed, much less take a walk around the block.
And I’ve been unhappy at times, at everyone and everything. As I have seen nobody but my husband he’s been at the brunt of listening to how unhappy I am in those moments. Not constantly, but it’s been like a simmering pot that sometimes spits a few droplets of water onto the stove to create a short fizzle. Yesterday I just boiled completely over, though. I lost control and the tears came hard and fast. Yes, it was a release, and I think they can be very healthy as if you are lucky enough to have someone to listen to it tends to allow for an honesty of raw thought without the glaze of being brave in the face of anything. No stiff British upper lip, no ‘try just smiling’.
The thing with something so debilitating is that there is very little that anyone can do, and in the absence of a meaningful course of action, family and friends help by trying to understand. So every day I speak on the phone about the inaction, the fact that things haven’t changed, or worsened, and answer questions as best as I can on what is happening, what will happen next, why I can’t do a particular thing and why the doctors can’t give me a particular test or another yet, but quite honestly I do not have all of the answers. A lot of what is happening at the moment is ‘let’s get past this ‘flu and then see what we can do’, information gathering, biding time. The slow inaction of all the things that have been held up so much are frustrating to me, and add to my stress and worry, but I know it has been unavoidable, so I try to keep rested and keep positive. The frustration that people voice on my behalf is honest and raw, and I know that it is supportive in that they too feel this frustration and want whatever can be done to happen, but sometimes I feel as if I am absorbing all of those frustrations. I know those frustrations they are voicing would not exist without me, and my illness, and I feel, therefore, that I am a cause of frustration in people’s lives. And I don’t have the answers.
A lot of the replies I give, daily, are ‘I don’t know’. Actually, I use ‘they don’t know’ sometimes, too, because the doctors are in the long process of determining cause and treatment. The most usual causes (alcohol, certain infections and diseases) do not apply. I’ve tested negative for them all and I don’t drink, now or historically. Everything is on pause whilst I get over my current illness (the one I have on top of my chronic illness). I can’t take painkillers or antibiotics, or many other things. I’m painfully and exhaustingly riding it out. I know how much it bothers my loved ones to hear this, and how much it hurts my husband to see me in daily pain, so I understand why they ask the same questions, and feel the frustrations that I have when I can’t give the answers they want, but I have started to feel that people are frustrated with my answers, my lack of a solid plan. Obviously they are upset at the content of my answers rather than with me for giving them, and though my head knows the former is true, my heart feels the latter. I want to apologise to everyone for not knowing, not having the answers, for being a burden of illness and not being able to give back as much hope and positive course of action as they would like. As I would like.
Maybe it will ease off as this drags on as I have been told to expect, but for now I feel as if I have been defending my lack of positive response for months, and yesterday I completely beat myself up emotionally over it.
I know it hurts people to hear it. Having to confirm that yes, things are horrible and things are still the same every day to your own mother is upsetting. She herself is awaiting an operation, a step towards curing a debilitating physical condition, which was due this Friday but which has been cancelled again due to the ‘flu problem that has swept through the hospital she was due to attend for surgery. I think we’ve started to at least keep the exchange of disappointment to not be the entire conversation these past few days. I have asked her to tell me as soon as she has any news, any difference in herself, any dates for appointments, so she’s not having to tell me every day that she doesn’t have the answers.
Honestly, I don’t have all the answers because the doctors do not have all the answers. I’m not keeping answers to myself, or not being forthcoming in asking questions, or wanting to be ill. I really am sorry for the frustration that must accompany all of those responses I have given. I feel it myself, and I feel it from my family and friends. I know how upset you are at it, I do understand, and I am sorry that I am the cause of that upset in your life. I want it to go away. I want to be outside playing with my boy, hitting up my favourite cafÃ© for my ‘usual’, which they’ve probably forgotten now, but I can’t. For now, this is the life I have until I have some more answers.
But I’m still happy.
When I’m not thinking about being ill, which is possible when I’m curled up on the sofa with my little guy, or enjoying a cup of tea, I am perfectly happy. This weekend we drove to the shops and we had an hour or so together just getting a coffee (not in my favourite coffee shop, which would have meant me walking, so I am sorry I cheated on you, Coffee Republic… I like your old people and big chairs). It’s the first time I had been out in so long. I wasn’t really well enough to go out, and I looked like an old ham in a wig, but I needed to, and it was excellent. I didn’t even like your Chai Latte, Starbucks (far too sweet), but it was excellent.
I am exhausted and in pain just all of the time, but humans are surprisingly robust in adjusting to a new base line, and everything above that is still wonderful. I have done some form of craft or art activity every day apart from one since January (I’ve been tracking it), I’ve got a new meal planner pad with all of my home-cooked batch cooking laid out for the week, so we have something warm and home-made without all of the work. I’ve bought a new quilt and I’m re-designing a tank top with trilobites on.
I still expect to talk every day about my health, and that’s a good and healthy thing, but please do not be frustrated with the things that I do not know. Insisting I find out the unknowable puts me in an impossible position. And let’s talk about some of the other things, too, because I’m still trying to live my tiny, happy life alongside this big thing, and its important, as that’s where all my hope and my love lives.