Autoimmune Disease And What Lays Beyond Tired

I had no idea of the meaning of tired until I became a mother. Those days of new motherhood with a tiny baby redefined the terms exhaustion and grueling. Pregnancy was like a boot camp for what was to come. Those seemingly endless nights of sleeplessness, unable to get comfortable, the constant waves of nausea and indigestion did not so much prepare me for the shock to the system that was caring for a new baby and those two to three hourly feeds, as tire me out before I had even started to run the marathon. I thought those days of bone crushing exhaustion were behind me. My child is a competent and sweet teenager, and I spend time wondering if I am ever going to get to see any grandchildren to spoil and return for all the hard work stuff that parents have to do. That was until I became seriously unwell with connective tissue disease.

My battery pack is broken. I never fully recharge, any energy expended leads to an extended period of total inertia. I sleep like a narcoleptic on xanax. I have morphed into that tea party dormouse, sleeping away the day, and missing huge chunks of important conversations. I am here…but I am not here at all. The tiredness outshines that of new motherhood. It is in my bones, and more worryingly no amount of sleep cures it. I am simply not replenishing my energy levels. Apparently it is a standard part of the autoimmune disease package, this absolutely life-destroying exhaustion.

I do not have the energy to deal with much at all. I can’t manage much in the way of conversations, keeping up friendships, functioning to do new things. I get so tired, I could literally fall asleep on my feet, and have done so. The doctors are not interested in making my life more comfortable. I am sure there are drugs they could give me so I can stay awake and function better, but they sure as shit are not going to do so. I might have some fun, and that is unforgiveable. Just like I have been told to take a paracetamol for bone erosion, inflammatory arthritis and the rest of the pain that goes with this mish mash of diseases, the doctor merely shrugged her expensive shoulders and dismissed my pleas for help.

Since I decided the treatment made my quality of life worse, not better, and stopped after the first round of chemo (which I have yet to fully recover from, it was so intensely awful), I refuse the life-wrecking prednisone, and there is no way I am risking the terrible side effects of plaquenil, which include blindness, I am left to my own devices. I take turmeric, vitamin D and cbd. I do yoga and push through the pain of my joints hurting. I meditate. I try to relax and not let anything upset me. No stress leading to low cortisol levels, good food and calm days are literally life-saving right now. I have dropped quite a bit of weight since the diagnosis. I also have celiac disease and the meds they gave me made it impossible to eat. I have just about got my stomach back to some kind of working order. The Boy has been pureeing coconut into smoothies and making chia puddings. I am trying to fight back and regain some quality of life.

The pain makes me tired. The disease exhausts me. I am a wreck. If I can get up and do stuff, I will. I make plans for days out, and then plans to cope with not being able to do much for days after. I am not that old. To lose my vitality when I have always been active, a rebel, a fighter, a renegade is crushing. I have been looking into other alternative therapies, and there are a few things I might try. A lot of them are way too expensive. Acupuncture comes at a huge price, and to risk wasting that money when it might not work is beyond me.

I am hoping I wake up from this disease like a bad dream. Having had one autoimmune disease – celiac disease – for many years increased my risk of developing another. I have had autoimmune issues since childhood, it was just that they never blossomed like they have now. Apparently domestic violence victims, and people who have been put under vast amounts of stress are more likely to develop autoimmune disease. The body literally starts to fight itself. It makes sense that I am the only one tough enough to kick my own ass. It is almost funny, but I wish I would stop. I want a life ahead of me, and instead there is a cloud of uncertainty and disability. I am going to have to start to use a stick when I leave the house, and I really don’t want to. I feel if I give in to it, then it is only even further downhill from there.

I often feel guilty that I have no energy to give. I try and save it all up so I can give quality time to the Boy. I find myself apologizing for my lack of stamina and the fact I cannot stay awake. It upsets me greatly. Thankfully he understands and is supportive, but it is so difficult to explain to other people that what looks like laziness or ‘depression’ (I dare anyone to accuse me of that – it is not a mental illness, not that there is anything wrong with being mentally ill, but this is a physical sickness, not all in my damn head), is actually being terribly unwell with a disease that is attacking my body, eating my bones and reducing me to a state beyond tiredness. Women especially are so often told to go away, that it is their ‘nerves’ not their bodies that have gone awry. Our pain and our illnesses dismissed and minimized, even by female doctors, is a common theme when I read others experiences of this disease. It is time women stood up and demanded to be treated with respect. Doctors need to concentrate on how to improve quality of life. I suspect a rx of adderall would get me on my feet, and they give it to children like candy, but when an adult needs something to get them up and about because of a terrible illness, it is no go. Moralizing feeling well, and venerating feeling sick is the symptom of a failing society with no compassion at all.

I am hoping that I can get a handle on the whole thing and it eases up on me, lets me live a little more. I time my writing hours so I have energy to do so. I time exercise and force myself to do it, hoping for a small boost. I wish there was a cure, but I would make do with a few more good days, and fewer unbearable ones.