Confessions of a chronically ill mum #10

Can’t believe it’s been ten weeks since I started these musings. It’s amazing for me to look back and see the peaks and troughs, highs and lows. I’m very aware that I started writing #ConfessionsOfAChronicallyIllMum quite soon into starting intense Dialectal Behavioural Therapy

For me, I can really see how therapy has helped me come to terms with a lot, and also manage life with chronic pain, physical illness, flare ups of all conditions, as well as PMDD. I would be lying if I said that my hormones are no longer upturning my life every few weeks, because the shift into luteal is still very prominent, despite being on birth control that claims to reduce the frequency/stop ovulation, I am definitely still ovulating. The good news though, is that knowledge and coping skills really are power when dealing with any kind of life trauma, even if that trauma occurs repeatedly.

But and it’s a big but…. No matter how many tools are in your arsenal for the bad days, no matter if you have lots of support or none, there will be days that completely derail you. I know, because I’ve had several myself this week. A visit to the hospital to talk through the treatment options and risk factors for my cardio vascular health, the penultimate therapy session for said DBT group, meaning discharge from the perinatal service is imminent, and being a few days post ovulation, these factors sent me into a spiral. I was wracked with anxiety, up all night, ruminating, latching onto intrusive thoughts, and getting angry and paranoid. I know one hundred percent that I am due on. I know this is premenstrual, and on its own it’s bad enough. Having these additional life factors occur during the luteal phase has highlighted to me, that my coping skills are not absolute.

Kaiser is still teething, he’s been teething since the day he was born, I swear! And he still never sleeps at night. I thought Ciara was a needy baby, and she was, in lots of ways, but this kid is next level. He’s also (dunno if I’m allowed to say this) a typical boy! He’s into absolutely everything. Spending all day oscillating around the furniture, then throws himself off of it 4 or 5 times for good measure. You cannot take your eyes off him for a second and it’s hard. I’m exhausted. I’m also always keyed up and on edge trying to keep him safe.

Despite knowing these things are par for the course of being a woman with a Premenstrual disorder and many chronic health problems, and despite knowing this with Kaiser is all part of #mumlife it’s still not remotely easy! Because for me, it’s not just #mumlife it’s #Sickmumlife. Every hour of every day is spent chasing this kid around and I don’t have the energy for it. I also suffer dearly for the privilege of being parent to two beautiful kids. I have to pay for my time with them, in energy depletion and excruciating pain. I am robbed of time with them because of PMDD and the crippling anxiety it brings with it. I lose weekends with them to migraine and fatigue, and I struggle to provide for them because I can’t turn up often enough to do my job! Also… getting any government help for people who need it is like pulling fucking teeth.

Don’t get me wrong, I’m not saying for a second that I have it worse than most, I know that’s not true. I’d also never say that I am unlucky, because that’s also not true. I just want to sometimes be able to say it’s hard and for someone not to try and offer me green tea suppositories, or a commentary on why their life is harder.

I’d like for people to stop dropping in those two little words at least. Eg: At least one of them’s at school. At least you’re not really disabled. I am! For fuck’s sake, I am!!

Having to prove or feeling like I have to prove the status of my health & illnesses is draining. When at the hospital Thursday, as I hobbled in to the consulting room the nurse asked me what I’d done to myself?! I was so fed up by her question that I literally just said ‘I’m disabled’ because it wasn’t enough that I was wearing a sunflower lanyard stating that I have hidden disabilities, whilst walking like John Wayne after four days of bareback. She still felt it appropriate to ask the question. It made me uncomfortable and I didn’t feel up to offering an explanation. This proved to me that we’re still a long, long way off from wholly accepting that if you don’t look a type of way, you must not feel as you profess to either.

Confession this week is this: Despite doing a lot of work on myself and learning to let go of lots that isn’t within the realms of my control, I still sometimes feel bitter. Radical acceptance has helped me a lot, but there are days, like those mentioned above that I’m still so angry at how my health seeps into every single aspect of my life. I confess that I am terrified about returning to work because I don’t know if I am going to be reliable enough to hold down a job, even a part time one. I confess that even though I’m getting better at understanding my limitations I am still sometimes furious about them. 

Ciara had a birthday party yesterday and it took every ounce of energy I possessed to turn up. To greet the other children and their parents and act like I wanted to be there. She had the best day, and I felt a lot of guilt around how I felt towards the party. But, it worked out in the end and we made it! Sometimes it’s having no choice that actually pulls you from the darkness. Sometimes, choice or not, that isn’t attainable. I’m glad I made it happen yesterday.

Confessions of a chronically ill mum. #4

It’s all been going on! Since last week’s news about my health, I’ve been determined to go full steam ahead with the diet change. For us, living on takeaways we can’t afford and binging on food instead of our pre kid vices like booze and fags, has been the norm for so, so long. Shaun set us a goal of no takeaways in February and I know we’re only 2 weeks in but for a couple who ate pizza and mail order brownies several times a week, we’re smashing it. I’ve signed up to do a diabetes prevention course which I’m keen, but also stressed about getting started on. Keen because I want to make the best changes possible, but stressed because it’s another thing to try and squeeze in to my ever full appointments calendar.

Kids

Kaiser has started crawling! At seven months old, Ciara was crawling at six months plus two weeks, so this didn’t come as a huge surprise. But how annoying are kids that move so soon?

Confession - This week Kaiser had to see a paediatrician. I won’t go into detail here but, we need to get a urine sample from him. Note I say need and not needed because after two hours of trying to catch his piss in a plastic tub, inside a waiting room on the children’s ward, I gave up. I also, and shoot me for being a terrible mother, wished they would just do a bastard heel prick blood test and let him scream! After failing in my attempts and wrestling him into a position that wasn’t comfortable for either of us, I left the appointment sweating profusely in unbearable pain and doing a lot of cussing. Nobody wants to see their baby in pain, but dear god I would of preferred the blood spot over that pantomime. Worse still I am going to have to endure the debacle all over again in my second attempt. Have googled whether it’s ok to wring out a nappy, but have been sadly informed it is not! Fucking Kids!! To top that, Ciara had an appointment at Bristol Eye Hospital and fainted! My second confession is that I was glad it was Shaun that was with her and not me. I know that sounds awful but I also know I would have panicked so badly I wouldn’t of been able to cope. Or maybe I would, maybe I’d have dealt with it on autopilot. Right now though, I’m just glad she’s safe and seems to be otherwise fine. She’s so desperate to go to school tomorrow for her non uniform day in aid of Childrens Mental Health Week that I’m letting her sleep with me tonight so I can monitor how she’s doing. 

Hormones

I’ve been struggling immensely with TMD and went to the dentist on Monday only for them to shave off half of one of my wisdom teeth and then tell me that probably won’t work. PSA, it didn’t! Unfortunately, hormones (those bastards) really flare up all of my pain and it’s not unusual for me to experience horrific TMD during ovulation and through luteal.

Speaking of hormones, I’ve been taking progesterone for around 4 months now, and whilst I am seeing some relief from the mental health symptoms, physically things are no better. In fact I may even go as far as to say they are a little worse. It’s hard because I have to weigh up what is worse, and realistically I know it’s the crippling anxiety and thoughts of suicide, along with inexplicable rage. But knowing this still doesn’t make the physical symptoms any easier to manage.

Breakthroughs

What I will say though, is that I am managing the mental symptoms I am experiencing, much, much better. And I think I have therapy to thank for that. It’s a slow burn, therapy! It makes you feel vulnerable with each session, but the more vulnerable you can allow yourself to be, the less that vulnerability is able to take hold. Then suddenly, seven months later, you realise you are doing better! You don’t always feel it, but you know it’s true. The feeling of drowning in quicksand every time you have a bad day gets less, and it starts to feel more as though you’ve just been inconveniently splashed by a car driving through a muddy puddle.

I’m not saying I’m cured, or that I will never have episodes of dread and impending doom again. But I feel right now, that if I do experience that again, I have more tools in my arsenal to help me fight it. I’ve another eight weeks of group therapy to get through before I can be discharged from the perinatal service. Discharge looms, like a black cloud really, because I’ve been helped in so many amazing ways by the team that I’d like to be able to talk to them about my trauma forever. At some point in the not so distant future, I’m going to have to hold my own hand.

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.