So, this post is mostly a compilation of my late-night writings to myself or in support groups. It was the only way I would be able to get anything together with this degree of cognitive impairment. Unfortunately, it's been a very depressive time, so a lot of these are very dark thoughts. I don't even know if I should share, but I guess I will for those wanting to know what's up.
Last time, I posted that I knew things could get worse, and I was right. Most of the developments in my life have been personal family developments that I wouldn't publish to the web. But family strife has certainly put extra strain on everything, especially my mental health, which of course impacts my physical health.
We developed a new problem at my mom's house. In late July, window repairs needed to be done for dry rot outside around the windows. Since it was outside work, I wasn't too worried, although all repairs are risky. Well, it's been a disaster for me. I've been to the house three times since the repairs. The first time was two days after, and I walked in and walked right back out. It felt like I was inside a bottle of nail polish. Since I left so quickly, I didn't suffer ill effects that time.
A week later, I tried again to visit. I stayed about 20 minutes that time, even though I still detected the fumes. The problem is, I smell them at first, but then I seem to habituate to the scent, so I can't tell just how sick it will make me. I have to go by symptoms. So, while in the house, I developed pressure and pain in my face and burning eyes. By the time we got to the car, it was screaming, head-exploding pain. That went on for hours that night. Just screaming and crying in bed while holding my head. I also had vertigo, nausea, and dystonia (body contorting in muscle contractures). It was absolutely horrendous. And with a reaction like that, you know the whole cascade is coming, and the symptoms will last weeks. So in addition to persistent head/facial pain and lack of balance, the following week brought itching burning red swollen eyes, itching sinuses, raw throat, excess mucus, diarrhea, insomnia, heart palpitations/racing, burning torso/crotch, and burning chest. Absolute misery. And yes, there were other triggers along the way that could have been making it worse, but it's impossible to know.
Two weeks later, I had had enough of the near total isolation, so I tried another visit. I spent time with each puppy inside the house and didn't think much about the scent. But after about 12 minutes, I knew I needed to leave. I had instant facial pressure and pain, vertigo, urgent diarrhea, and excessive urination with bladder/urethra pain. All of that happened right after exposure. The flared-up bladder still seems to be going on a week later, but not as bad as the first day, when I peed seemingly gallons and became very dehydrated and listless. I've also dealt with general itching and burning all around, along with persistent facial pain.
Again, there have been other triggers along the way. The weather has been great some days but terrible others. I was requiring extra Zyrtec for a seeming seasonal flare up of typical allergy symptoms. I was also on 3-5 Benadryl a day due to the severity of the symptoms. But the extra Zyrtec and Benadryl messed with my digestion by slowing it down too much. Fortunately, I seem to be okay back on my regular dose (which is still double a normal dose, but normal for mast cell disease patients). I also tried some allergy eye drops since my eyes have been so irritated, but I ended up with a mass of symptoms just from the eye drops. Stupid benzalkonium chloride is the likely culprit. It's a disinfectant used as a preservative that my body cannot stand! (Also used in hospitals a lot, contributing to them being unsafe places for me.) So there were overlapping reactions, but the clear-cut symptoms from the Zaditor eye drops were worsened eye redness and irritation but also a racing/pounding heart overnight with insomnia and diarrhea. That cleared up as soon as I stopped the eye drops. So frustrating and never ending to react to the whole world. (I just found this article on this preservative potentially causing and worsening corneal diseases. Wow! I've been on allergy eye drops since middle school. https://www.pharmacytimes.com/resource-centers/eye-care/eye-catching-study-the-truth-about-benzalkonium-chloride)
So, I have been coping with all of these symptoms almost entirely alone at the condo, because my safe second home, where I spend more than half my time usually, is causing most of this trouble for me. But the endless days alone are very difficult on me emotionally. I miss my Wilma dreadfully. I am coping with other personal struggles. I am drowning right now. The depression is so heavy. I am scared. Many days, I feel completely numb and braindead all day. It can take reaching 12:00 AM for the tears to fall and reality to really seem real and to be able to turn my thoughts into words.
Chronic illness comes with a cycle of grief and acceptance. It is perpetual. However, I believe I went through the worst of the grieving around age 19-22, when I was an absolute emotional wreck at all times. I didn't know what the future would hold for me, but I knew life would never be the same. I knew I had lost so much. And it took years of grieving to deal with that. And it came back again after each surgery failed to produce the desired results. The grief still comes back time and time again as my illness requires more and more acceptance. But I want to believe that the worst of it is over. I certainly hold no expectations of a normal life, so there is some peace with that acceptance. Nonetheless, I am in a time of grieving yet again. Grieving how my illness has affected my brain. Grieving how it hurts those I love. Grieving the repeated trauma of severe reactions and the lack of accessible medical care.
There's a topic that comes up in support groups, and that is the idea of not being defined by your illness. The reality is that we are shaped by our experiences, and my illnesses have such major lifestyle limitations plus cognitive impairments, controlling my experiences over many years, that they have absolutely shaped my personality.
It used to be so important to me to have an identity outside of illness. But I'm afraid it's long past that point. Yes, I care about other things. I care deeply about people and animals. But my illness rules all. It dominates everything. I cannot be separated from my illness when it is this pervasive, when it has taken over every corner of my life, how I live every moment. It controls me. I don't get to make decisions or have preferences. I don't get to choose my hobbies or have passions. I don't get to choose who I spend time with or how I spend my days. I don't have much say over how it affects my relationships. I try, and I have tried, but I always lose. I have fought battle after battle, but there is no point fighting. It's not an illness I can beat. I'm too smart to still believe that after half a lifetime of the same thoughts. It's not defeat, just some kind of forced acceptance. Literally all I can do is keep stepping forward. Keep avoiding most risks while taking unavoidable ones. Keep listening to my body and responding as I have to. I am a slave. I am my illness.
So to truly be on my side, you have to be against the things that make me sicker, even when it's hard, even when it's inconvenient, even when it's not your preference. Because I don't get to have a preference. No wants, no desires, no dreams. Only what my body needs.
So what is the worst thing about living with mast cell disease for me?
The near total isolation and loss of family and friends, even those that make an effort. I am too difficult to accommodate because nowhere and practically no one is safe for me.
But I certainly fear the loss of food after exposures too. As well as the lack of medicines that I tolerate, making improvement impossible.
I am terrified of aging and not having any meds that comfort or treat the conditions associated with that. I watch others age, and they absolutely could not get by without antibiotics and pain meds and sedatives. That is how our country and most of the world deals with aging and dying. We provide comfort care. But nothing can provide me with comfort. Not for many years now. Not since I stopped tolerating so many meds (that also allowed improved function). I believe in Death with Dignity and hope this will be an option for me when the time comes.
I am very scared that my body cannot tolerate procedures or surgeries or even most tests, so medical care is basically inaccessible to me. And I have quite a few conditions that generally require treatment! So it is quite scary to know that I am basically untreatable, whatever comes up. I will have to live with these craptastic knees for the rest of my life. And my spine is not allowed to become any more unstable because that treatment is unavailable too. Unfortunately, spinal instability in EDS is known to be progressive.
I fear that I am already on the maximum dose of the sedatives that I tolerate. And with my completely lost ability to sleep, that is a dreadful feeling.
I fear having only one safe brand of each medication I depend on because they won't be available forever, and I can't get by without them. But other brands cause me severe symptoms. This has already been problematic time and time again for years and will never stop being problematic.
I am paralyzed at the thought of life when my mom is no longer around because she is my main emotional and practical support person and the only way I survive day to day.
I fear that my marriage cannot survive me being this sick much longer.
The massive untreated pain is up there with the worst parts of this disease too. It's hard to choose what is the worst.
So, due to the isolation of my single safe home situation as well as the pleasant weather recently, I have attempted a couple very cautious outdoor visits. By cautious, I mean that I can't get close to people, and I have to carefully find a place with open space and no smoke or laundry fumes in the air. It is a huge challenge and almost never possible. These visits have been moderately successful. I suffer from the sun, and I suffer severe pain from standing. And of course, I suffer from irritants in the air. I need to remember my wheelchair if I try this again. After a visit, I suffer complete and total exhaustion, sometimes worse than others. But it has broken my total isolation a little bit. I'm not ready to try again any time soon. I am worn out to the bone.
And yet again, I know that things could be worse. I am not technically bedbound, although the vast majority of my time is spent in bed or the recliner. I am almost entirely self-sufficient. And I have been surprisingly safe in my condo most of this time. I am very grateful for that. I also have love and support. So many don't have these things, and unfortunately, I have seen several in my support communities lose their battles recently. Without love and support, these challenges truly are insurmountable. Even with it, not every battle can be won.
So, this was a super dark post. I am so grateful to not be alone, even though I do spend so much of my time alone. I am considering virtual or online therapy to have some extra support getting through these dark times. But my cognitive impairment and frequent severe reactions make even that seem like an extra obligation that I am not equipped to handle.
So, it's been another rough spell. Aren't they all? I will always remember that it could get worse, so I am still grateful for the things I have right now. Right this moment. I am so grateful that the symptoms I get during a horrific reaction, while traumatizing, are not the totality of my existence. I am grateful that even though I am never pain and symptom free, I have times that are easier than others. I am grateful for moments of peace. I am grateful when the level of suffering reduces. I am incredibly grateful for each and every one of my eight safe foods, which seem to be sustaining me. I think my metabolism must have slowed a bit on the lower calorie diet because I don't seem as scary skinny as I did a month ago (although I haven't weighed myself). I am so grateful that my husband helps to keep my only safe space as safe as it can be for me. I am grateful for my mom's absolutely unwavering, unconditional love and support. And I am so grateful for all those that love and care and reach out.
