Parenting while perpetually exhausted

I’ve been talking solely about the kids in this blog, but one of the things that affects them is me, and my health. So I’m going to talk about that today. I don’t think my story is unique. In fact I know it’s not. For a lot of women in particular, we struggle with chronic illness and lack of answers because the medical community doesn’t take us all that seriously.

My health has been a bit of a mystery for a lot of years now. Approximately 10 years ago, I started developing some pretty significant symptoms. I started reacting strongly to certain foods, which would clear out my digestive system in a heartbeat. I also developed pretty extreme fatigue and weakness.

I went to my GP. Many times. She referred me to a respected gastroenterologist who did some testing, found nothing, and told me – I kid you not – to find a psychiatrist because there was nothing wrong with me physically.

That charming man was the start of a decade long wrestle with doctors who casually decided that I was crazy rather than doing any further digging into what could possibly be wrong. I went outside of my hometown to two different doctors in Boston. One truly very helpfully ruled out celiac disease by doing a genetic test on me. The other – a cocky Resident in a respected practice there – not helpfully scoped me fully, told me that there was mild inflammation throughout my entire digestive tract and blood in my stool, but that the inflammation didn’t look like known inflammatory bowel diseases under the microscope, and therefore there was nothing really wrong with me.

I learned to manage my symptoms by rigidly controlling my diet. I cut out gluten, dairy, soy, corn, rice, apples, pears, grapes. Anything that triggered my symptoms I eliminated from my diet even in trace amounts. My list of foods that caused symptoms kept growing, and I lived in perpetual terror that I would run out of foods to eat. I stopped eating out entirely because no restaurants could accommodate my dietary needs. Our food budget was ridiculous because I still desperately craved things like bread, and the only bread-like food I could find was very expensive and required me to make it myself. But I just gritted my teeth and endured. What else could I do?

Then I had an appointment one day with a GP about something totally unrelated, and I couldn’t get into my regular GP so saw one of her partners. The new GP walked into the exam room, waved my thick file at me, and asked “what is all this?” We talked for a few minutes, she referred me to another gastroenterologist (who was equally unhelpful), and suggested that we potentially should try a medication that is known to help with intestinal inflammation: sulfasalazine. She said that even if we couldn’t determine exact cause of my issues, it seemed like something was definitely going on, and she had other patients like me who responded to this medication but who didn’t have a particular inflammatory bowel disease that had been diagnosed.

I went out to my car, sat in it, and cried. This GP? She believed me. She didn’t treat me like I was crazy. Incidentally, I changed my designated GP to her that very day.

Sulfasalazine turned out to be a miracle drug for me. Within about 10 days of starting the drug, I came down in the morning and stood in the kitchen for a minute pondering the effort required to make coffee. I thought to myself “I feel kind of weird. What is different?” It finally dawned on me that I was standing up straight. I hadn’t stood up straight in years because of chronic abdominal discomfort. It was just… gone.

I took sulfasalazine for years. Over time, my intestines seemed to heal. I got back the foods that I had lost, and lived happily able to stand up straight. Chronic fatigue didn’t go away, but it got much better. I was placed on gabapentin for my anxiety (an off label use of it) and it miraculously took away all of the joint and muscle aches that perpetually plague me. I love gabapentin. It’s my favorite of my current drugs.

I had other setbacks along the way. When I did get sick, I got very sick, and wound up with pneumonia on the regular. I got mononucleosis one year, and it took me, well, I’ve never really recovered fully from that. The fatigue has lingered for years afterward. But when I first came down with that I was really very sick, and discovered that mono is not just about fatigue, but can cause spleen and liver problems too.

On the whole though, I hummed along through life needing lots of sleep but generally being functional. My health issues had a decided impact on my work and on my parenting, but they were manageable-ish. I got used to them anyway. I gave up on seeking any kind of answers and just adjusted to a life that required lots of sleep.

And then Covid hit. And all the manufacturers of sulfasalazine stopped manufacturing it. I don’t know the exact reason, but my sister who is a VP at a big pharmaceutical company and who understands things about Pharma manufacturing suspects that the raw ingredients needed to manufacture sulfasalazine are needed to manufacture drugs that are used to fight Covid. Whatever the reason, sulfasalazine stopped being available.

And my guts hate me for it. In fact, my whole system does. When I stopped taking sulfasalazine because I could no longer get it, my intestinal symptoms returned, and worse, my fatigue went off the charts. Like, needing a minimum of 14 hours of sleep a day every day is my jam now. My kids have been known to literally beg me not to take a nap because they miss me because I spend so much time sleeping. That absolutely kills me.

Over time, the GP who prescribed sulfasalazine for me has become less fabulous. I don’t know if she’s become jaded as she works in the field, or if it’s solely because I’ve gained a lot of weight (once upon a time I was a svelte size 2 in part because no food would stay in my digestive system for more than 20 minutes), but she does not treat me with respect anymore like she used to. All of my complaints about my fatigue have fallen on deaf ears.

And then my husband found a new GP within the practice, and recommended that I try him. Desperate, I agreed to try yet another new doctor. Lo and behold, this one is a true gem! He believes me. He’s taking it seriously. He’s noticing some weird things in my blood work that have been overlooked for years. He’s done enough blood tests on me to suck me drier than the mosquitoes in an arctic summer. He’s taking into account my reaction to going off of sulfasalazine, which is an immunosuppressant, and believes that I need an immunosuppressant. He is sending me to a rheumatologist because he believes that I have an autoimmune disease that is underlying all of my symptoms, he just doesn’t know which one. (My husband and I have believed for YEARS that I have an autoimmune disease but no one would take the idea seriously until now). He’s also sending me to another gastroenterologist – sigh – but it is time for another scoping. Yay.

I’m feeling hopeful again for the first time in many years. He just put me on a tapering dose of steroids to knock down the current state of inflammation in my system, and after just a couple of days of steroids I feel like a million bucks. Once again the intestinal pain has gone away, and I can stand up straight, and bend over, and generally just function without hurting. The fatigue is a little bit better too. I love steroids.

What does all of this mean for me as a foster parent? It means that I can never quite keep up. We have two kids during the week and three every weekend, and they’re all whirlwinds of mess makers. They are all high needs kids. They need a lot of attention, they need a lot of assistance, they need a lot of me. They come with service providers and case workers who need to come to the house regularly.

And I cannot keep up. The house is always a mess. It doesn’t help that I have ADHD and I’ve never been a good cleaner to begin with, but my medical issues and all my fatigue have a major impact on how much I can pour into keeping my house clean. When it comes right down to it, I would far rather play a game with the nine-year-old and sit and chat with the 16-year-old and let the three-year-old dress me up than clean. From where I am sitting, I am looking at squeaky dog snake on the floor, a diaper bag overflowing with random clothes, a pile of construction materials for our bathroom, a zillion bottles of the teenager’s Pepsi that don’t fit in the pantry, stacks of papers on the desk, and a whole hell of a lot of fur because it’s shedding season and we have a zoo.

Messy house places a strain on my husband to. During his super intense nursing school semesters, I have been on solo kid duty a lot during the day, meaning I’m responsible for all of the transportation and medical appointments and appointments with service providers and keeping up with the house and making dinner. Then he comes home at the end of an exhausting 12 hour shift at the hospital, and is faced with a mess and kids who need him immediately because they’re needy, and it’s an all out assault on the senses.

Thank God I am no longer working at the law firm. Now that sulfasalazine is not available and I am sleeping so many hours each day, it’s crucial that I have a flexible schedule and the ability to work from home. If I didn’t? I think I would need to be on disability. And I don’t have a diagnosis to make that possible yet. So far I am managing to juggle court appearances – most of which are virtual still – and meetings with kids who are my clients, and still managing to get enough sleep because I can nap with the toddler a lot of days, and can go to bed when my husband gets home in the evening.

Is it sustainable long-term? I don’t honestly know. I do hope that we can get to the bottom of some of my issues and that some other pharmaceutical that I have yet to meet will be able to make a difference for me like the sulfasalazine and steroids do.

My husband is about to start as a labor and delivery nurse at a hospital towards the end of June, and we will again have a two income household. I’ve been working for many months without getting paid because that’s the way the system works for attorneys for children, and the relief of having a steady paycheck coming in the door will be immense. (I will get paid eventually when cases get resolved). I have ultimate control over how much work I get just by telling the judges how much they can assign to me so I can keep my workload somewhat below full-time as needed. My kids are more important to me than anything, and I would far rather prioritize my precious awake time with them than work.

I’ve learned how to parent while horizontal on the couch. The toddler can still dress me up when I’m lying down, and appreciates the easy access to my face. The teenager stands and talks to me while I lie there. And the nine-year-old tends to snuggle up with me when she gets the chance. They’re resilient kids in so many ways, including accommodating my medical issues. Somehow? It all works. I wish I could run around with the kids the way I used to, and sincerely hope that a new drug will allow me to do so again.

But until then we will make do with a tired but very loving Mom.