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 #8

That chronic illness life is the gift that keeps on giving. Lots of things happening over here at DivamumHQ! Big and small changes being made and as ever, 100’s of appointments.

I started this week proud and feeling relatively ‘good’ I’ll tell you about it….

So you know I said last week that the cardiologist explained I’m showing signs of heart disease? Yeah well that’s still a thing, but I’d also had loads of blood tests taken in Jan and many of them came back abnormal. One of them, was my plasma viscosity or ‘inflammation in the blood’ I found this, like all of the others, stressful to take in. I have fibromyalgia as you know, and usually Fibro doesn’t show elevated inflammatory markers and so I couldn’t really understand what had changed. With the blood glucose also being high and everything else with my heart, it was a worry. The GP I spoke to suggested doing a repeat blood test once I’d got going with my healthy lifestyle changes. Now we all know, I don’t walk very good, and I think I’ve also mentioned I’m overweight. Well, since these findings I’ve been trying really hard to be healthier. Not so much even to lose weight, but put a little effort in to eat right (healthy), reduce portions, try and move more. Anyway I’ve managed to lose 9lbs now, and I had the repeat blood test this week and guess what my plasma viscosity is back within normal range! I’m so so so pleased, I honestly can’t even begin to tell you how rewarding it is to see tangible evidence that the work I’m putting in may well really improve my health. Of course there’s lots that can’t be done and in terms of heart disease, if I have that, it can’t be reversed BUT I can still prevent serious complications by sticking with healthy choices.

I’ve also been attending a group focused on diabetes prevention. It’s a national programme run by the NHS that has an 80% success rate. I’d gotten to a point where doing it on my own was only adding to my stress and stress itself is a factor that can increase your likelihood of developing type 2 diabetes. I’ve only had two course meetings so far but already I’m starting to understand my food intake better and the things that are within my control to be able to change. If you are reading this and considering the course, I would highly recommend it.

So that was all great… yeah? Yeah…. Until…. I went to my mum’s Thursday and when I came home and sat down, I couldn’t get back up. My pelvis has gone again. The trouble with this is, I don’t know why or how, so that means I also don’t know when or if my mobility will return to as it was. I can tell you, being immobile with a crawling baby is frightening & quite dangerous to be honest. It’s upset me because during pregnancy I was told often that my mobility would be limited postnatally, but it did improve and that gave me hope.
So now it’s poor again, it’s scary!
My health is forever fluctuating, I am learning to be more accepting and appreciative of my limitations, but it’s far from easy and acceptance isn’t linear. Some days I’m able to find gratitude in the smaller things, able to accept the things I cannot change, and others, I despair.

Confession: When my pelvis went I questioned if this was it. Is this when my body gives up? Will I walk again. Will I walk with aids again, maybe forever? 

But that aside, I have had a few positive take aways from this week, and I’ve included them below in an Instagram post I wrote this weekend.

I’m only four weeks away from the group therapy I’ve been involved in coming to an end. I really can’t describe in words how educational, enlightening and empowering attending the group has been. I want to do a whole blog post on group therapy, so I’ll save the ins and outs. One of the things we have been working on though, is radical acceptance. If you’ve not heard of this check out the link, as someone who lives with both physical and psychological illnesses that are not curable, this has been a really useful tool in my arsenal.

Confessions of a chronically ill mum #6

I cannot write a blog at the moment and not mention the atrocities that are taking place in Ukraine. I feel, as many or all of you do, helpless and extremely overwhelmed. There are things we can do though, many local communities have teamed up to take donations and we can donate financially. We can also all spend a little more time looking after the people that we love.

It’s important to remember when we’re/I’m feeling overwhelmed and powerless, to focus on things within our control. As mentioned with the Ukraine situation, we may not be able to make an immediate impact, but we can make an impact by doing things to help that are within our power. Donate in anyway possible. If you cannot afford to donate financially, donate physical items. You can find more information on how to donate with The Red Cross here

But I’ll confess, that this week I have turned down the news. Not because I don’t care, but because I do. I’ll confess that I am scared. I’ll confess that I feel immense guilt about situations out of my control. I’ll confess that sometimes the world’s problems weigh heavy on my mind, and other times I am consumed by my own. You can be a good person and care and still prioritise your mental health by taking a break from the influx of news occasionally. 

The impact of stress on our physical health

When I become overwhelmed my anxiety spikes and if it spikes too high, it topples over into full blown panic. When I am experiencing panic attacks I cannot care for myself or my family. I become plagued by intrusive thoughts and life starts to spiral. I cannot just sit by and allow that to happen again. I have to try and use the skills I’ve learned in recent months to dial down the anxiety. Particularly because I was told this week that I am significantly high risk for heart attack or stroke, not in the future, but now. I’ve mentioned before that these risk factors showed up on recent blood tests. This week I had an appointment with the cardiologist who confirmed said risks. I am very frightened about what this means, of course I am, I am only 33 years old… and I have a family. However I am taking important life changing steps that are within my control, to reduce these risks as much as possible, but that doesn’t mean it’s any less taxing, or terrifying.

Reminders

What I need to remind myself of though, is that risks do not equal certainties. Because again, if I overthink the risks I am likely to spiral and lose my shit entirely. Group therapy is helping me learn lots of coping skills and medication is levelling me out, to a degree. Ultimately though, I have to take back my power and remind myself everyday that my best is good enough. There are many people in the world without my underlying health conditions whose lives still follow a trajectory that ends with ill health. Therefore I have no control over how my body responds to stressors, but I do have some control in eliminating some of those stressors. I am working hard on cutting down on my sugar and lowering my GI intake because of the prediabetes. I have removed fast food from my diet and I am trying to move more.

  • Mentally I am trying to relieve myself of guilt associated with my worsening health.
  • Physically I am trying to move more and be proactive.
  • Emotionally I am setting aside gripes and trying to improve communication with my family. I am trying to be more present, always.
  • Proactively I am following all advice from doctors and taking them up on the offerings of lifestyle support.

Tonight I had my first diabetes group. It’s a nine month program offered to NHS patients to reduce the risk of developing, or experiencing, complications from diabetes. I didn’t want to attend, mainly because I’m hormonal today, experiencing a moderate flare up in fibromyalgia symptoms and profound fatigue. Kaiser turned 8 months old, he still doesn’t sleep, is teething and very, very demanding. You cannot take your eyes off him for a second because he’ll be chewing the dog’s leg or eating the dirt dirt off the bottom of Ciara’s wellies (FML). Ultimately though, I just couldn’t be assed. I debated several times throughout the day not bothering with the course at all, because of course I know how to lose weight and be healthier all on my own. Diabetes isn’t just about being overweight though, in fact it isn’t at all, many slim and even underweight people, have diabetes. It’s about learning what is going to fuel your body and what is likely to hinder it in specific relation to blood glucose.

I’m so glad I attended, because I learned a lot. I’d go as far as to say I’m excited about the course now, because it’s giving me back some of the control I’ve been scrambling around anxiously for.

More than anything I want to make positive but sustainable changes. I know my life will be hindered by illness I’ve lived with chronic symptoms for a long time now and unfortunately there’s no cure for most of them. But there are things I can do to help myself. My whole life I have fallen victim to believing that everything is shit so what is the point, and the point is…. Everything doesn’t have to be shit all of the time.

If you are affected by diabetes you can find support here Diabetes Uk

Finishing quickly on another positive, I lobbed off my hair and went even more Cruella, let me know what you think via my insta.

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Currently, Divamum makes no money, and whilst I love writing, in order to keep growing I have decided to accept donations.
Just to clarify you are in no way obligated to make a donation and at no point will this become mandatory, it’s just there as an optional extra for anyone who would like to and all information is available via the link. https://www.buymeacoffee.com/Divamumsteph

Confessions of a chronically ill mum #3

Where to start. Good news or bad? I think I’ll start with the good. The weekend just passed, my husband and I went away for a cheeky, little, couple’s soirée. We travelled about an hour away from where we live in Bristol, to the Mendip hills and stayed in a holiday cottage. It was divine. The most exquisite bedroom complete with a roll top bath and Netflix, we spent most of our time in there catching up on….. you guessed it, sleep!

It also had a wood fired hot tub, we only successfully heated it up once, so the following day we had to cold dip instead! Suffice to say that ‘dip’ was much shorter in duration!

I’ve mentioned in previous blogs that I don’t really drink alcohol anymore. Only on very rare occasions, not because I’m a martyr or anything like that, just because my health doesn’t really allow for it these days. I was worried about how we would entertain ourselves without booze as this is the first time we’ve been away together since our wedding in Jan 2020! I needn’t of worried though, we had such a lovely relaxing time, chilled, acted stupid and just made the most of not having a child hanging off an arm each for three nights! I also managed to get through the weekend without any real flare issues. I did have hormonal cramps on one of the days but given the pain levels I’m used to, it was manageable and I’m so thankful for that.

Fast forward to Tuesday and I received a letter I wasn’t expecting. I’ve had a lot of tests recently because of a decline in my health and new unexplained symptoms. One of the tests was a standard blood glucose test and one of them was a cholesterol test. My cholesterol has been high for some time and I’m now, at aged just 33 being told I’m at serious risk of developing cardiovascular disease in the next five to ten years and will require lifelong medication to prevent the risk of heart attack and stroke. I had gestational diabetes in pregnancy and was prescribed both oral and injectable insulin. It was hell on earth to be honest, I became obsessed with my sugar levels and racked with anxiety and panic. My blood glucose result is high again and I read it and cried, my father has type two diabetes and because of having gestational diabetes I am high risk already. I believed immediately I had type2 and would need insulin again. It turns out after reading the results properly, I’m in pre-diabetes or borderline diabetic. Which means: I need a lifestyle overhaul immediately.

It’s safe to say despite not yet being diabetic I am still devastated by these findings. On top of, Fibromyalgia PMDD Migraine SPD and Post Herpetic Neuralgia (reoccurring shingles pain) and catching covid at Christmas and currently being screened for heart and breast problems, I’m already in a pretty bad way. If we add in the mental health stuff too, Panic disorder and Perinatal Anxiety you might be starting to understand, as to why this has devastated me so much. Or you might be thinking I’m a hypochondriac, I wish I was. But sadly, all of this is very real.

At the moment, I feel shrouded in guilt and shame around having so many health problems at 33 years old.

That might sound crazy, because I didn’t ask for any of this, but I haven’t always followed advice either. I haven’t always done the right thing when it comes to self care & I’m struggling with that, because now I’m having to live with real life consequences.

I’m struggling with it because I have two kids & I feel like they deserve better than what I’ve been able to give them. I can’t even get decent life insurance with a premium that I can afford because my health is in such a poor state.

I feel guilty when I can’t get to Kaiser fast enough because my body isn’t playing ball or when I can’t rock him to sleep or carry him upstairs. When Ciara sees me in bed for the 1000th time on a weekend (the only time I can get a break when my husband is home) and asks me when I’m going to feel better, it makes me feel like shit.

I mentioned last week that I’ve let myself go, particularly in reference to my weight and I know some people reading this will think, just lose weight then! But it IS hard when your body punishes you every time you exercise and your mobility is extremely limited.
It IS hard when you’ve given up lots of the things you used to enjoy, and now your main thing to look forward to is what you’re eating.
It’s hard when your hormones upturn your life every two weeks and your hunger is cloaked in rage and desperation. It’s hard when you have no energy to prepare food, and you can’t open the lid on a jar, or lift a pan without help. It’s embarrassing. I am embarrassed. I’m ashamed to admit these things, they are the things I keep hidden or try to do independently and pay for afterwards. I’m telling you now, because it’s the truth. And because I know I have to take some accountability for the state my health is in.

Confession: These are excuses, but (hear me out) in some cases they’re valid excuses, because they do affect my ability to live a healthy lifestyle. And on top of those excuses I have been making positive changes. I’ve made so many I can’t even tell you, especially in direct relation to my mental health. However, physically it’s not enough, there is no alternative. I have to start somewhere, I have to lose weight, I have to try and build on my fitness somehow, and I have to start now. 

I’m not wallowing in this latest health hit. I refuse to do that. I cannot be overcome with additional anxiety about my health. I cannot change these things overnight, but I may be able to limit some of the risks if I start now.
So here I am, baring it all. Starting where I am and working with what I have, now, today. (Well actually I started yesterday, as soon as I read the letter.) It’s not going to be easy, but I can’t waste anymore time on excuses. I can’t just wait and see. I have to take drastic action.

I have to take action, for my family.

If you or someone you know lives with any of the health conditions mentioned you can access information about where to get support via the hyperlinks.