Confessions Of A Chronically Ill Mum #2

This week in our house everyone seems to be fully over the ‘Rona, except me, of course not me. My symptoms are lingering and have worsened whilst I’ve been in the luteal phase of my cycle. This isn’t unusual, I often get flare ups in all symptoms around this time of the month, and particularly symptoms stemming from viruses that weaken your immune system. I’ve had recurring shingles for a few years now and every single month without fail, despite being on antivirals indefinitely, I get a flare up in nerve pain at the outbreak site.

Having said that, this past week I’ve been busy! So busy, that I’ve had to be organised. I notice this organisation has had a positive impact on my mood despite being in luteal. It’s classic distraction I guess. Also my husband and I have a weekend away booked as it was our wedding anniversary this week and just knowing that I have three nights of child free sleep to look forward to, is undeniably liberating.

A few more things happened and one of them was, I saw a new GP. A big deal for me. I’ve had the same GP since before my Fibro diagnosis six years ago, and she’s been amazing. The idea of seeing a new one whilst she is on maternity leave has filled me with dread for months. But today I did it. It was ok. I went in with a list and ticked off all of this in 10 minutes….

  • ECG Booked
  • Fasting bloods booked
  • Referral to rapid cardiac clinic
  • Breast clinic follow up appointment booked
  • Chased up Lipid clinic referral
  • Discussed further gynae/endocrinology input re PMDD
  • Post covid obs done
  • Face to face appointment for Kaiser booked for post covid obs.

Why am I telling you all of this in a blog post?

Well there is a reason, and it’s this weeks confession. I have always been a person that actively advocates for myself and my health. After all if I don’t, who else is going to do it for me? I research everything, I connect dots and I track my symptoms. But for months now, I have been slacking. It took me two months to drum up the courage to get a referral to the breast clinic, even though I had a very visible lump in my left breast. I just couldn’t do it. I couldn’t be bothered to argue the toss with the drs receptionist about why I needed a face to face appointment, and every time I spoke to a healthcare professional that wasn’t part of my mental health team, I cried. 

When you have chronic and mental illness you get used to being dismissed by doctors.

Can’t breathe, crushing chest pain? Probably just a Fibro flare up, I’m sure that’s a symptom! Or actually maybe it’s anxiety, have you been stressed lately?

Skull smashed open and brain hanging out? Sounds like a panic attack.

Gone blind? Sounds like a migraine.

And so on. I know I’m being glib, and I’m sorry if this exaggeration offends anyone, but seriously, sometimes visiting the doctor is like pulling fucking teeth. The issue with that is, the doctor’s the only person who can help you get the treatment you need, for the answers you had to figure out yourself.

And when you have kids it’s not even a case of whether or not you can cope with your symptoms. You don’t get a choice. I know it’s easy for me to say, and many people reading this may well think, well if it was that bad you wouldn’t be able to just cope. The truth is though, parents with their own health issues do just cope. Even the ones diagnosed with life threatening cancers still do the school run between scans and treatments. I personally have friends who have had to do this so I know that it’s true for some.

Big thing number 2.

Group therapy. I started it today. I want to write a whole blog post on the pros and cons once I’ve had a few more sessions so for now I’ll keep it brief. The session was two hours long. Two hours spent with a group in person might have felt quite nice, a chance to learn some new mindfulness skills and have a chat with others in a similar boat to myself, but two hours online was painstakingly long. Kaiser napped for just 15 minutes of it and trying to listen to other women speak over the top of crying baby heads felt strained. There were a few rules too, like we had to keep our camera on at all times so I couldn’t roll my eyes or go for a wee without having to let everyone know my reasons. I want to benefit from the group and I’m sure in time I’ll get used to it and maybe even bring some of my own value to it, but today I found it just made a stressful day with a baby, more stressful. The whole idea of this group is to be able to learn to regulate my emotions better, to deal with stress in a more productive way, and to feel more in control. So I’m going to stick it out, even if the first session did feel like it was an intrusion on my time. Therapy, I’ve learned is not supposed to be comfortable and it requires commitment so I feel I owe to myself to see this through.

Full time job

It has felt lately as though looking after my health and trying to juggle appointments and treatment is a full time job. Having a baby is also a full time job, both without annual leave or pay. I’m due back to work soon and no idea what I’m going to do about childcare or how to manage two full time jobs on top of a part time paid job. I want to be well in order to participate in my children’s lives, but I also need to earn money to be able to give them a decent life. The system is still fucked. It still penalises mothers who work or have partners. Childcare is still extortion, and I know I’m not alone in this plight. I just wish it was one of the ones I didn’t have to think about right now, but I know I do, as with the cost of living rising and wages becoming stagnant, it’s a very real threat to our livelihood and I guess lifestyle too.

Finally

Finally I’ve become more aware this week just how much I’ve let myself go, and I’ve set myself tiny goals of putting my makeup on more often and making sure I’m grooming myself! So far it’s going ok, but they do say it takes at least 3 weeks to form a habit so I’ll catch you up then.