Confessions of a chronically ill mum #19

Hi. It’s been longer than my usual long while since I posted COACIM. In fact, I haven’t been writing anything much and definitely nothing so personal. I’ve had neither the inclination or the ability, and I’ve barely been keeping up with my medication not least my mothering responsibilities. It’s all felt like such a lot lately.

Not sure if I mentioned here before, but back in March I saw a consultant about my cholesterol. It was ridiculously high, putting me at serious risk for heart and cardiovascular diseases. I resisted starting medication because I’d not long commenced HRT. I’m already quite heavily medicated for my anxiety, fibromyalgia and migraine, and statins have a bit of a bad rep for side effects. Anyway, last month the consultant called me and said I had no good cholesterol in my body and without medication ‘it’s not a case of if you’ll have a heart attack or stroke it’s a case of when’ adding firmly at the end ‘you’re a ticking time bomb.

This conversation took its toll on me mentally, as you might imagine it would. Especially because since the appointment in March I’d been working really hard on looking after my health and essentially this consultant was telling me it wasn’t good enough. I felt at this point as though I had little choice, so I ignored my reservations and started the statins.

Long story short, so far the side effects are indeed awful and I have been really unwell. The worst flare up in my fibromyalgia symptoms I’ve seen for some time. I have been wading through treacle each day, or at least that’s how it’s felt with the level of fatigue I’m suffering. Brain fog and my memory, which had worsened significantly since starting HRT anyway, is now shot to bits. I’ve always prided myself on having a good memory and taking in information but for the last two weeks I have barely remembered what day it is, and that’s not an exaggeration. I’ve led in bed on days I’m supposed to work and been confused at why my alarm is going off and Kaiser’s dressed for the childminder. I’ve not been able to write because I can’t remember what it is I’m trying to say. It sucks, and this post itself has taken me a week to finish.

As you may know fibromyalgia causes widespread pain and profound fatigue. Since starting statins this has worsened and I have severe muscle pain, while also feeling as though I have the flu, all the time. I’m napping during the day when Kaiser naps and having to throw water on my face to stay awake during a work meeting. I can’t lift my son because my body feels too weak.

Parenting is kicking my proverbial. Day and night, night and day. Even after having a break last weekend to sleep and recharge whilst the kids were with my mother in law – it doesn’t feel like enough. I need a break after 10 hours. Shaun and I are drifting with no real idea where the fuck we’re going because we’re too exhausted to hold a conversation. He is knackered from picking up all the slack and it’s pretty shit because I don’t know what my alternatives to these tablets are. The consultant made it sound as though their wasn’t one. Kaiser has started walking and yes…he’s a total babe, but he’s also hands down the most exhausting human I’ve ever come across. I find being his mum a privilege and sometimes, like now when I’m not feeling my best and being brutally honest… a chore.

I have a feeling Ciara might be going through some developmental changes, because her emotions are all over the place and it can be hard work trying to prize out of her what’s going on. She is a tiny perfectionist whom hates doing badly at anything and it’s become more pronounced this term. I don’t know why or how this has become such a big deal to her because we rarely ever tell her off and absolutely never for getting something wrong or making a mistake. It’s gut wrenching to see your child grapple with their emotions. She also has the hearing of an elephant and questions everything you say, remembers it, then recites it back to you… so there’s no hiding in this house and sometimes let’s be honest, mums want to hide (well I do anyway)

Finally, I wanted to add that I’ve been feeling quite sentimental and at times, extremely lonely. Your world can become horribly small when you’re unwell and people do drift. I’m not blaming those people because I know it’s nobodies fault – when someone (me) is constantly cancelling plans and letting people down, often last minute, you lose your place as first on the list as an invitee…. I just think Covid and everything else that’s going on in the world right now has highlighted to me how insular I’ve become. It’s a bit of a dichotomy for me to be honest, because part of me loves being in a familial bubble and not having to explain myself to people or show up for small talk, but the other part of me is in need of genuine social and human connection. What I do know is I don’t really have a lot to say about much other than my health and the kids, and I’d like that to change soon, adding a bit of me back into the bargain.

Overall, and in spite of what you’ve just read, I’m happy. I’m trying and sometimes even succeeding to not letting myself be sucked down into my usual negative cycle of mum guilt and self loathing. And I feel immense gratitude to be embarking on new journeys and to have had some really amazing and exciting opportunities come up for me recently. I will elaborate at some point but ultimately what I’m trying to say is, I don’t want this post to be all doom and gloom, because my life isn’t all bad in fact it’s mostly good but it’s still hard to live with poor health when parenting small and impressionable children.

I do also have a HRT update for you but for now I can’t even begin to concentrate enough to fill you in on that, too. It’ll come soon if I can manage it! 💙

Ask Me About PMDD

Earlier this week I shared the below image to my Instagram stories and gave you the opportunity to ask me any questions you might have about PMDD.

Image used with permission from IAPMD

Having suffered with this illness for more than 20 years I feel I am equipped to answer questions relating to the condition and as a result of my own experience. However, it’s important to note I am not a medical professional and all answers are my own words, with no association to any organisations that are linked in this article. Relevant links are included so that you are able to corroborate mentioned treatment options and use diagnostic tools.

How did you obtain diagnosis?

This question came up several times, with many of you saying you had tried and failed to have PMDD accurately represented when speaking to GP’s and medical staff. In my experience from discussing PMDD within the online community I have come across similar tales and it’s one that follows a similar trajectory to that of my own experience. I first suffered from mental illness at aged 13, suicidal ideation, attempts and thoughts occurred, followed by bouts of extreme rage, panic attacks and enduring anxiety. It wasn’t until some years later I had made the connection between my feelings and my menstrual cycle. I remember seeing a GP aged around 19 when I said I believed I was suffering from a hormonal imbalance. I didn’t know at this stage that PMDD is a reaction to normal hormone fluctuations, an imbalance was my assumed interpretation. She told me all women suffered ‘some PMS symptoms’ and that there was no diagnostic blood tests that would give insight into my mental health and it’s correlation with my cycle. Since then I have seen the GP and several gynaecologists in excess of 100 times for the same problem. When I finally began to be taken seriously around age 23, my GP still referred to my condition as severe PMS. Last year aged 33, I became so unwell during pregnancy and after the birth of my son that I was hospitalised and it was only then, under psychiatric care that a psychiatrist referred to my illness as Premenstrual Dysphoric Disorder. More recently this year when seeking further intervention privately, the Gynaecologist (whom is also head of his department in an NHS hospital) again confirmed a PMDD diagnosis.

Diagnosis is a huge relief, it allows us to stop gaslighting ourselves into believing we are raging hypochondriacs. BUT clinical diagnosis is not necessary for treatment of the condition. Your GP can advise, and treat PMDD symptoms even whilst still referring to it as PMS. If these early treatments such as lifestyle changes, hormonal birth control and SSRI’s work for you, you may never need a formal PMDD diagnosis. That’s not to say you won’t want one for your own clarity. If this is important to you, I suggest keeping on at your GP for specialist referral. If you are struggling to get a diagnosis and believe you have PMDD please head over to IAPMD for help and information on diagnostic criteria and talking to your doctor. They have an array of tools to help you cycle track and a glossary of terms that will help you explain exactly how your condition affects you see: Iapmd toolkit.

You also have fibromyalgia, do symptoms of both conditions overlap?

In short, yes. In detail, a higher percentage of fibromyalgia sufferers are women. A symptom of the condition in women can include painful and heavy periods dysmenorrhea. It’s also known that many persons living with fibromyalgia will suffer mental health problems, so it’s my opinion and personal experience that it’s fair to say symptoms overlap. PMDD can trigger a flare up in fibromyalgia pain, more prominent and prolonged fatigue, as well as sensory overload, brain fog and migraine attacks. The key difference between the two is that PMDD only occurs during the luteal phase of the menstrual cycle, which occurs between ovulation and menstruation. Instead, fibromyalgia symptoms can and do occur at any time during the menstrual cycle. I am often alerted to the arrival of PMDD by waves of crippling anxiety and intrusive thoughts that disappear when my period arrives. However some physical symptoms that might be triggered by PMDD end up lasting long after it’s end and will alert me to a Fibro flare up. Also with my experience of fibromyalgia, pain doesn’t ever disappear entirely. I always have some form of baseline pain. Many people also report joint pain with PMDD along with migraine attacks, these are present premenstrually as a result of PMDD and can occur and worsen at any time with fibromyalgia.

Can PMDD come on at any time in life?

Yes, it absolutely can. Some people find their PMDD starts or worsens with a reproductive event, such as menarche (which is when mine started) after pregnancy/birth or miscarriage (when mine worsened) or with the onset of perimenopause. For some it will seemingly come from nowhere. It is believed that PMDD can also be linked to genetics, childhood trauma and depression.

Is PMDD a disability?

Here in the UK, you are covered under the Equalities Act and therefore thought to have a disability if you have an impairment that is either, physical or mental and the impairment has a substantial, adverse and long term effect on your normal daily activities. Depending on the severity of your symptoms you could be covered under the act with a PMDD diagnosis. When explaining PMDD to my employer I advised how it affects me, for example: I suffer menstrual migraine attacks that leave me bed bound for days, along side extreme fatigue and joint pain. As well as this I also suffering debilitating anxiety, intrusive and suicidal thoughts and panic attacks, which make carrying out daily activities impossible. Cognitive impairment such as brain fog and an exacerbation of any underlying symptoms are also worsened with the onset of PMDD. The fact these symptoms occur every month, and last for 2 weeks makes this a long term condition with substantial impact on my life and ability to function.

Why do doctors prescribe SSRI’s for PMDD if it’s hormonal?

After diet and lifestyle changes SSRI’s are a treatment option to help manage the mood and anxiety symptoms that are present with PMDD. Whilst you may feel you aren’t depressed, some women (myself included) have found benefit in taking SSRI’s, both month round and only or double dosing during the luteal phase of your menstrual cycle.

Are palpitations a symptom of PMDD?

PMDD has many, varying symptoms. They range from severe mood alterations, to debilitating physical symptoms. I personally do experience palpitations during both ovulation and the luteal phase. I’m also extra sensitive to stimulants such as alcohol, sugar and caffeine during this time. All of which make palpitations worse and more noticeable. If palpitations are persistent it’s always best to get them checked out to rule out other possible causes, though I know many people experience them alongside profound anxiety, so if this is one of your PMDD symptoms it could also be exacerbating your palpitations.

Summary

  • PMDD is a chronic and debilitating condition with a range of symptoms that vary in severity.
  • There are a range of treatments used to treat PMDD and their effectiveness is very individual.
  • PMDD can and does exacerbate underlying conditions, this is sometimes referred to as PME (premenstrual exacerbation)
  • PMDD can occur at any time during a person’s menstruating life.

I hope this information is helpful. For more detailed and expert advice head to IAPMD where you’ll find everything you need to learn more about PMDD.

HRT to treat PMDD – Week 5

This week if I had to use 3 words to sum up my HRT experience I’d use: BLOODY, ENTHUSIASTIC and BRAVE.

Bloody

I’m still bleeding two weeks after the last time I told you I was bleeding. Which isn’t ideal. It’s not spotting either, it’s a couple of pad changes a day. The main cause for concern here is I can’t really tell what is or was my menstrual period and so I don’t know my cycle as I normally would and therefore struggle to determine how my symptoms relate to which phase. However, for now, I’ll take the blood. I don’t want to put up with it forever, of course that would become troublesome, but so far the blood I’m losing is a minor problem and is being outweighed by positive changes and more calm.

I’m also unsure whether this bleeding is related to the oestrogen gel, or the progesterone in the mirena coil as both report similar effects. It still needs noting though, because it is a troublesome symptom if it continues long term, and I don’t want to have to add an additional progestin treat it.

Enthusiastic

I chose this word because for the most part it’s how I’ve felt in the last two weeks. Potentially this suggests it’s when I’d usually be in the follicular phase, or that HRT is doing the job it was prescribed for. The trouble with me is, I am a pessimist, after decades of cyclical hell I’m almost programmed to think it can’t be working. However if I’m being honest, with both you, and myself, I have felt better, less anxious and more able to cope. It’s summer holidays -I mean if there was ever a time that was going to tip me over the edge this would be it! But I’ve managed to get out with both kids, I’ve caught up with friends (just having the energy and enthusiasm for this, is hugely positive) In the last few days I’ve suffered migraine attacks and felt fatigue and muscle pain (which I think is related more to Fibro than PMDD) and still my mood hasn’t plummeted. Moreover I’ve not been plagued with those awful intrusive thoughts. All of this, for me, is quite something!

Brave

I chose this word because I have done things I’d usually panic doing, like driving places I don’t know, on my own, and trying to get my steps up, increasing my movement. I’ve still had anxiety around doing these things, it doesn’t just disappear, but it’s anxiety in relation to normal life stuff as opposed to being crippling, as is normal during PMDD.

Gynae Appointment

I saw the gynaecologist to discuss my treatment plan and review my use of HRT. He got full marks as soon as I entered, when he thanked me for my email. I was relieved to hear that he had taken the time to read it, it was long! I explained all of my symptoms to him over the past two decades. He asked me how I cope during PMDD and I explained to him that for the most part, I don’t. Some would argue this, but I am forever calling on my mum and husband to come and help with the kids or indeed in a panic that they then have to talk me out of. I told him I’ve been in crisis so many times premenstrually that I almost feel it’s normal. That I swing from feeling like ‘I’m going mad’ to being able to cope. He fully supports a PMDD diagnosis. To be honest just hearing those words as opposed to the ‘severe PMS’ my GP always uses was such a relief that I ended up leaving in tears.

What was even more positive for me was the options he presented me with. Just finally feeling as though I have some was effectual in calming my racing mind! I’ve always known the treatment pathway, I’ve just never been able to get a doctor to consider me for the next stage before now!

We concluded that I will remain on the HRT for another few months unless I do not see any continuity with the improvement, or I experience a relapse. The next phase is chemical menopause which is induced by injection of GNRH analogues. As it’s an open referral to a private hospital, it’s left open so I can call him any time and book the next available appointment for the GNRHA shot. If I go down this route I will leave the mirena in situ and continue to use Oestrogel. I would then trial the medication for 6 months before deciding whether or not to have surgery to remove both of my ovaries and Fallopian tubes (Bilateral Salpingo Oophrectomy)

No major surprises at this appointment I knew what was to come next, I just thought I’d have to fight harder for it. Relieved to say I didn’t. The consultant explained that to obtain the injections for chemical menopause, I would need to have the first one in secondary care (Private treatment centre) and then I could be referred back to primary care to receive the injections on the NHS. This was really reassuring considering my mum paid for my appointment and I have £14 in my current account, so there’s no way I can afford private healthcare in the longterm. That said it was still worth every penny to us as a family, to enable me to have these discussions with a knowledgeable doctor whom is experienced in Premenstrual Disorders. I feel like there’s hope, and options and both of these were in short supply before my appointment.

I plan to write another blog really soon to answer questions relating to PMDD, but please remember IAPMD are the oracle when it comes to premenstrual disorders, so head on over there if you need advice, questions answered, or resources to support you.

HRT to treat PMDD – Week 3

If I could sum up the last three weeks in three words they’d be INSOMNIA, ANXIETY, and HOPE.

Insomnia

So let’s start by telling you about the insomnia. I’m not going to sugar coat it, it’s been horrific. It began almost as soon as I started using Oestrogel and unfortunately it remains. If you’re reading this, you’re probably a HRT user yourself, menopausal, someone who thinks they may have PMDD or a PMDD sufferer. Or maybe you’re none of the above and have no previous insight into hormone replacement therapy at all… I know it can be confusing when deciding whether or not to try a new treatment, especially with how the media portray HRT as either a wonder drug (and for many it is) or a carcinogenic. But like with anything we put into our bodies, there are side effects to consider. For me, insomnia has been one of the most problematic. As a mother and someone whom lives with chronic fatigue and on occasion hypersomnia, I have found this particular symptom difficult to navigate. Mainly because, if you’ve ever lived with insomnia you’ll be aware of how it can feed into anxiety. Just how dark the depths of the night can become when sleep is evading you.

Anxiety

Since beginning HRT I’ve had loads more energy – which to some would be deemed a positive side effect. However, for me it’s not been so good, because the energy I seem to now have in surplus, is creating a quagmire of anxiety and ‘nervous tension.’ In short – I can’t relax. I’m feeling often keyed up and on edge.

A few other notable side effects have been:

  • Hot flashes
  • Nausea
  • Breakthrough bleeding – though this could be attributed to the recent mirena coil I now have in situ.

Hope

But I’m still hopeful…. Mainly because what else have we got if there’s no hope? And also because it’s very early days and adding in additional hormones was always likely to cause some symptoms particularly when you’re adding them to treat a hormone sensitivity and not necessarily a depletion as you would in menopause.

I’ve also just finished reading I BLAME THE HORMONES by Caroline Suzi Church and that gave me hope. It’s something I want to review on its own blog post, because the similarities between mine and Caroline’s PMDD trajectory are so similar, it’s more than I can possibly squeeze into a paragraph on this blog, but if you have PMDD you absolutely need to read it! Not only is it scarily accurate, a whole half of it is dedicated to treatment and self help. It really is a wonder of a book with so much insight into reproductive mental illness.

Positive changes

Finally, I need to finish by saying there have been some positive side effects, though fewer, it’s important for me to be transparent. Many people have great results using HRT and as mentioned above I am still really hopeful that I too, will get to experience more of these going forward. One positive change I’ve noticed is a reduction in the severity of my overall joint pain. Which is pretty huge considering I’m in pain almost all of the time. I’m not pain free now by any means, but my joints are beginning to allow more range of movement and I can only attribute this change to coinciding with my use of HRT. Another thing that’s improved is the horrific intrusive thoughts I was having. They are not gone altogether, but when it comes to feeling out of my mind I’ll take every single win (however small) I can get and this is one that suggests HRT could be the right direction for me.

Dear Steph – I’m afraid my partner will cheat on me.

Dear Steph,

I’m in a new relationship with a great guy. I’ve been dating him for seven months, we met through work and have been inseparable since. The relationship is moving fast and we’ve already talked about moving in together. But I’m so insecure, every-time he goes out with his friends I’m convinced he’s cheating on me. We’re both 28 and my last relationship was two years ago. My ex who I thought was the love of my life cheated, and it killed me. I know my new partner is already getting fed up of some of my comments about his social life, but I can’t stop myself from saying them or feeling jealous when he’s out…. I even feel insecure when he’s at work or the gym. I know how this’ll sound and I am embarrassed, but I feel so paranoid when we’re not together. I don’t text him all the time when he’s out, but the next day I’m so stressed about what he might have been up to, that I avoid talking to him altogether sometimes. He’s never given me any reason to doubt his loyalty to me but he is a lad’s lad. He’s getting annoyed with me over my ‘jealously’ what can I do?

Emma – Swindon Uk

Dear Emma,

I’m sorry you’re feeling like this. I’ve been there; and don’t doubt that almost every woman I know has at some point in time been where you are also. You probably already guessed what my advice is going to be, and that is to start unpacking the insecurities that have embedded because of the infidelity with your ex. Whether that be with a therapist, or with yourself. Jealousy and fear are like mould in a relationship, it starts off as the odd spec but if you don’t treat it, it grows at a rapid pace. Before you know it, your whole house is covered in rot. You obviously, though not unsurprisingly, have some trust issues. But your new man isn’t your ex, and it’s unfair and unrealistic to expect him to be penalised for someone else’s mistake. I myself have trust issues, mainly from a fear of abandonment, and I’ve been in relationships that have torn me inside out wondering ‘what if.’ When I met my now husband, I was forever waiting for him to let me down. And on occasion he has, and it’s likely will again, because he’s human. I had to learn to trust him regardless. What I’m trying to say is, your partner might fuck up by staying out late with the lads or forgetting to text you back, but that doesn’t mean he’s being unfaithful. I suggest being honest about how you’re feeling with your partner. You may find that rather than making him want to run a mile, it’ll help him understand and for you both to learn to compromise. You might worry that being honest with him will push him away, but your snide comments and avoiding him when your pissed off, is likely to do so much faster than an honest conversation will. It’s normal to fear history repeating itself, but moving in together is a huge step that requires a lot of trust. You don’t want to be the girl that goes through his phone and smells his shirts after nights out. That’s no fun for either of you. Talk to him now, explain that you have trust issues but you understand they aren’t his issues, and you want to work on them. Chances are he will be able to both reassure you and help you work through them. From experience I can promise you that any work you do on yourself to overcome this cycle of insecurity will pay dividends. Break the cycle now. I’ve included some links to organisations that may be able to offer you some support. In Swindon you can also self refer to talking therapies who provide free cognitive behavioural therapy, which focuses on changing the thought process and can be particularly useful if you have a specific anxietywhich in your case seems to be around trust, and probably also self esteem that was shattered by your exes betrayal.

Relate

IAPT self referral (talking therapies)

I also found this book which may be of some use to you. Insecure In Love By Leslie Becker-Phelps and it’s available to buy on Amazon.

Wishing you all the best, Emma. Acknowledging that you have these issues is the first step to overcoming them and being happy.

Steph x

Confessions of a chronically ill mum #17

It feels as though the last week has been littered with extremes. I have felt full all the emotions. Health has been quite poor, a migraine attack the weekend saw me in bed for three days. The longest I have been out of action for a while. To make matters worse I was due to be out with mum and friends yesterday and had to cancel. I’ll never get over the sinking feeling of firstly, having to let people down, and secondly, serious fomo at having your life made smaller because of illness.

I’m waiting for a call from the doctor regarding my referral for a more detailed treatment plan for PMDD. At the moment despite taking medication and birth control I seem to have fallen back into a fortnightly switch. Meaning, I get two goodish weeks, and two that set me on fire with the flames of hell. (Not an exaggeration) My anxiety has been so palpable the last two weeks, coming at me in waves, and I’ll confess, there’s been a few incidences where I’ve felt really terrified, again. Terrified that all it’s going to take is that one hormonal cycle that tips me over the edge and into madness. For those of you that think I’m already over that edge… Hun, you have no idea!

A few things have been niggling at me for a while – like Kaiser’s birthday and feeling some panic around what I remember from hospital and his birth. Those feelings of insanity and desperation- and PMDD seems to bring those niggles into the spotlight. I’ve tried again to write Kaiser’s birth story but it just too painful and triggering for me to go back there, it’s also too long! So much happened in those ten days I was in hospital, every-time I think I’ve told the story, I remember more, and it’s mostly hell.

Another thing PMDD does, is make my physical health so much harder to manage. This week I’ve had hives, migraine attacks, nausea, all over body pain in the extreme, and profound fatigue like someone has pulled the plug on my body and it cannot function until it’s recharged, which isn’t as easy as just getting some rest, when you’re a mum!

I think I mentioned quite recently that I’ve been working really hard on trying to be more consistent with my blog. I’ve also had a couple of other writing projects in the pipeline. I’ve had a few rejections too, which have been quite hard for me to move past. Not because I think I’m better than I am, but because it takes so much energy to be creative that when it doesn’t pay off as you hoped it would, it can be disappointing in a much more personal way. As I said, hormones don’t help my mood and undeniably influence how I perceive rejection whilst in luteal. It’s funny though, I’m writing this today after a hellish migraine, and there’s some pattern to me feeling a need to write after an attack. I have no idea if there’s any scientific evidence to suggest the brain becomes more focused after migraine, but for me, it seems fitting.

It’s been mentioned to me that I seem fixated with my hormones lately. And looking back at my last few COACIM it would appear to be true, I am fixated. However, I don’t think it’s just lately. I’ve always been obsessed with them, because of their insurmountable affect on my life. But I will confess again, that since having Kaiser they have felt magnified and I am both distraught and fascinated at how the fluctuations of hormones affect me (and one in twenty other women, too.) It’s hugely important for me to raise awareness of hormones and their effects on health, mental health in particular. So this is one fixation that’s here to stay. So much so, my next blog post is going to be about why you should track your menstrual cycle.

Also this week, I spoke to Enable magazine about living with Fibromyalgia and the impact of the condition. The lack of support during covid, for people in chronic pain, along with the changes to NICE guidelines and the prescribing of pain relief. The publication hasn’t gone live yet, so I don’t know how accurately I’ve been quoted, but when it does I’ll definitely share.

Finally, the kids…. Kaiser has been having tummy troubles since transitioning to cows milk and this has further affected his already crap sleep. And Ciara, well, she’s been her own kind of emotional. She is such a good kid, but communicating with her can be difficult at times. I notice she isn’t like me in my directness, she can hold back and that can make me panic, thinking there could be something going on she isn’t telling me about. However I also know, I need to learn not to push her too hard, together we are navigating this new stage and trying to respect each other’s feelings. It’s a whole new world, and finally I’m about to say something I never normally do…. She’s growing up too fast!

All in all, I’d say this has been a below par seven days. Life has felt harder, but in keeping with trying to retain some positivity, I am confident it will improve again soon. For now though I’ll leave you with some pics of the kids, because they may be enough to cheer someone who may have also had a shit week, up!

Almost one, not a fan of the sun 🌞
We chose to visit a man made beach on the coldest day of the week

Confessions of a chronically ill mum #16

So much can change in a week. Such as estrogen dissolving as fast as an effervescent pill. Or progesterone over egging the pudding and ballsing up those chemical reactions, more catastrophically than Walter White on his first cook. I’m speaking in metaphors because I’m bored of saying the same thing about how I feel being attributed to hormones. My boredom doesn’t make it any less true though.

This week I’ve felt my patience being stretched and my rage reaction time quickening. My body has shown signs of a flare up in similarly dramatic fashion.

Aside from that though, there have been good things happening too, and as is the new and improved version of myself; I want to concentrate on those. Not because I’m feeling overly positive, but because I am trying to extract the positive from days when there feels like there hasn’t been any.

On Saturday I wrote a caption on Instagram that saw me confessing to finding parenting both of my children, whilst alone and with physical limitations, really fucking hard.

The reason for the post wasn’t even so much about the kids, but more in relation to how I feel about myself and my disabilities. I know they are there, I know how much they impact me, and you all know, because I write about it. However, in my everyday life I find myself playing down how bad things get sometimes, because I’m worried about what other people might think. Or even sometimes because I do go as far as gaslighting myself and telling myself that I’m the problem, rather than the fact that my being unwell, is the problem. I compare myself to other mothers, as many of us do, but I compare myself to healthier more able mothers, and that is not a fair comparison. Being kinder to myself and remembering that I have limitations is an important part of healing. Even if that healing must occur every luteal phase, every flare up in chronic pain, with every migraine attack, I must remember it’s not my fault.

After I posted the above to Insta I packed up a picnic for Ciara and I, leaving the boys at home and we went out to meet up with our friends. A girly afternoon in the woods was exactly what was needed to distract myself from overthinking, to calm down and get some reprieve from the noise and the chaos of being home alone with both children earlier that morning. It did wonders for my mood in lots of ways and was great bonding time for Ciara & I. We made a den in the woods and ate chocolate cakes and cold pizza slices from tinfoil. Ciara climbed trees and used her imagination whilst I got to sit and have a moan to a friend. It was therapy, and simultaneously a reminder that these are things I need when I’m not feeling great. When I’m overwhelmed and unable to fight through the mental and emotional fog of everyday life. I need to take a break, get outside, force myself out the door and just enjoy being away from my phone pinging a comparison inducing notification every 75 seconds.

That little outing also reminded me, it’s ok to not love every second of motherhood. Reiterating to me that my not loving every second of motherhood, has no bearing on my love of being a mother. Which is an insurmountable amount of love. I just needed the quiet time to be able to reflect on that.

Outdoorsy but make it chill
Unless you’re six, then make it fun.

This coming week I have a lot going on in general ‘life stuff’ terms, and I need to remind myself of the things that soothe me when my mental health, hormones, or physical ailments are drip feeding their steady dose of hell into my body.

Do you have a go to self soothe aid? During therapy last year, one of the first things the psychologist advised me to do was to create a self soothe kit. I plan to write about this in more detail in a new blog, but until then, do share your personal self soothe favourites – but keep it clean! 😜

Confessions of a chronically ill mum #15

Hey! If you’re reading this, thank you. I’ve been really trying to up my blogging game of late, and it’s hard to keep up the momentum to post regularly sometimes, so I appreciate and value your time as readers, immensely.

I posted to Instagram yesterday confessing that I’m feeling really quite triggered by my son Kaiser’s fast approaching first birthday. I don’t remember feeling like this on Ciara’s first birthday, despite the memories of her in NICU I just felt proud and glad to have made it twelve whole months, and whilst I still feel proud and glad to have made it twelve whole months with Kaiser, the memories are stirring up emotion, too!

In other news, I’ve had my first physio appointment 18 months after the onset of pelvic dysfunction. It’s a long road to regaining strength, but I know I need to focus and do the exercises provided to get the best results.

Another confession from me this week, I’ve been eating really badly. I have zero motivation, hormones are wreaking their usual havoc and I can’t focus on eating well. I’m craving all the wrong foods and it’s doing me absolutely no good whatsoever. I need to do better. I know that diet affects how I feel and even though I know this I still find it so bloody hard to get it right. Our Gousto box usually turns up on a Monday and at least takes one problem (deciding on what to eat) out of the equation. Except, this Monday it didn’t turn up and that means I have to go shopping with no idea what to buy and even less idea of what to cook. If you’re a food blog, help a girl out, give me your best ideas.

Platty Joobs Stuff

I had a bloody lush little rendezvous with friends over ‘Platty Joobs’ last week, it was proper soul food. If you’re wondering if I’ve suffered because of it, then the answer is not as much as I thought I would. I really did enjoy myself despite not really drinking much alcohol. I laughed a lot and just felt really safe and able to be myself, which is something I value in my adult friendships. Following the rendezvous, Shaun and I spent all day Friday in bed, eating, chilling, binging Power Force and just being our pre kid selves, which was a delight. On Saturday I was starting to feel hormonal and my mood plummeted a bit, I’ve been feeling Fibro flarey for weeks and this was more prominent on Saturday too, but we got outside with the kids and it perked us all up for a few hours. Following that, Kaiser was sick everywhere and has slept like shit since. Oh and Ciara has another cough. The joys, eh! You know what though? We’re ok. We’re not great, we still struggle, the battle is ongoing, but in between, during mundane moments and fresh air, and sofa snuggles, we’re ok.

PLATTY JOOBS
WOODLAND WARRIORS

Final note, please remember I’m still looking for content for Dear Steph you can email in your dilemmas to divamumsteph@hotmail.com

Radical Acceptance – What it is, and what it is not.

I’ve mentioned on my socials recently that I’ve become more accepting of certain aspects of my life. First and foremost I’ve accepted the fact that I am disabled. It’s taken me seven years to fully get on board with the idea that this is something I must accept. In fact, my acceptance came very recently whilst attending a course of Dialectal Behavioural Therapy. One of the sessions was based solely on radical acceptance and what it means.

So, tell us, what is it?

In a nutshell: Radical Acceptance is a skill in Dialectical Behavior Therapy (DBT) that helps people learn how to accept very painful events, challenges, people, or aspects of their life. It’s one of the skills found in the Distress Tolerance module of DBT.

Radical acceptance for me personally has been about the above, accepting my illnesses and the fact they are life limiting, but that there are still moments, days, weeks, that are good. Sometimes even great. Radical acceptance has also played a role in how I relate to my pregnancies, my early motherhood experiences and things in my past that I cannot change. Major regrets and mistakes that I have made that have played an overwhelming role throughout my life.

So are you saying we should accept people who treat us badly, or forgive ourselves or others for things we’ve previously felt were unforgivable?

No. Foremost, radical acceptance doesn’t mean forgiveness. You can regret something you have done, dislike the part of you that did it and still accept that it happened. Similarly with actions of others. For example if you’ve been in an abusive relationship and your partner has hurt you badly, radical acceptance isn’t about forgiving the person who hurt you, or continuing to accept abuse. It is about accepting a situation, to help you gain the most peace and enjoyment from your life. If hatred for that abusive partner is eating you up, or if because of the trauma you suffered, you’re too scared to go out, practising radical acceptance can help you move forward to live a life more inline with your personal values. You do not have to forgive someone’s mistakes, you just have to stop letting them take up space in your head. I know it’s not easy. Another example for me: I have many regrets but one in particular has been eating away at me for over a decade. Everyday I was continuing to punish myself by telling myself I was not a good person. My ruminating became so bad it was affecting my parenting, I was having daily panic attacks and feeling as if my family would be better off without me. When learning about radical acceptance the psychologist advised me that I didn’t need to forgive myself, I could still hate what I’d done and understand that I could not change it. I could accept that it happened and try and build a life for myself, or I could continue to ruin my life by going over and over the same thing. In doing the latter I was hurting my family because they were worried for me, and that only served to make me feel more guilty and unloveable. RA is complex at first, but once you come to learn more about the concept, practice radical acceptance of the little things, like spilling cereal all over a freshly washed floor, the easier it becomes to do it with the big things. Like me with my regrets and my health.

Another one that I’ve been practicing (if you’ve been following my blog for sometime you may have come across me talking about this before) is the acceptance that sometimes people won’t like me and there’s absolutely nothing I can do about it. I don’t like everyone, in fact I’m quite selective in the people I call friends. But when it comes to others not liking me, I have been known to take it really personally. I’m not sure why, maybe it’s an abandonment thing, or a need for external validation. Anyway, the point is radical acceptance has helped me manage the impact of this and get outside of my own head.

If it were that easy we’d all do it

I know. And it isn’t easy. Therapy never is though. I think the first thing to remember with RA is that it’s about not fighting with your reality. Not actively trying to overcome something. Instead allowing the feelings you have about it to be there, but not take over. One of the psychologists on the course I attended, gave a good example of how to practise RA in the everyday. She used the analogy of being late. You know you’re late, you could stress and rush to get to your destination faster but you’re still going to be late. And if you stress and rush you’re likely going to feel worse. So accept that you’re late and are still going to arrive late, but this way, hopefully in a much calmer state.

You may never fully accept trauma you’ve experienced, and that’s ok.

The idea of practising radical acceptance isn’t to negate every bad feeling you’ve ever experienced, but to better manage those feelings when they are taking over your life.

Try it with the small stuff, and if it feels too traumatic to build up to the big stuff on your own, consider a course in dialectal behaviour therapy. My personal experience of DBT is that it’s worth it’s weight in gold when learning to manage painful and intense emotions. Being a big ol’ bag of emotions almost permanently, it’s been a freeing and life changing experience for me.

For more information on DBT click here

Confessions of a chronically ill mum 13 – I’m back

COACIM had a bit of a hiatus. This was unintentional but life has been both busy and really quite difficult in recent weeks. I’ve not been as active on socials as I usually would. My youngest child Kaiser, has been quite poorly. This has coincided with both my return to work and my discharge from perinatal mental health services. You can probably imagine what I am likely to say next… Yes, I’ve had a flare up. An exacerbation of my symptoms is common with life’s stresses and I’ve been feeling pretty rubbish in general. Mentally, I am still coping. My discharge from PNMH definitely rocked the foundations I’ve built though, and it’s been a weird and destabilising week.

Migraine attacks have plagued me, I had been back to work just days when I had to leave early to collect Kaiser from childcare because he was so unwell. It was also my mum’s 60th birthday. We’d had a weekend away planned that my sister and I had bought her as a present, I wasn’t sure Kaiser was well enough for me to leave at home, and I wasn’t sure I’d be well enough to attend myself. As it turns out, I did manage to spend a few days away with my mum.

It was lovely, not just to chill out with my mum but because one of my great friends came up from Devon and stayed with us also. I don’t get to see her very often and always miss her dearly, so to spend a few days in her company, alongside celebrating my lovely mum’s coming of age, was amazing. Amazing doesn’t mean perfect though, unfortunately after a walk Saturday I spent all day Sunday in bed unable to get up and move my body freely without crying out in pain. Several times my mum had to come into my room and help my up out of bed and onto the toilet. My life’s reality is hard to accept always, but particularly when I’m supposed to be celebrating and bringing the fun with me. I didn’t drink any alcohol so there was no trigger warning, just a body that doesn’t function well at times, and those times are usually times I am trying to live. Somedays I thrive but most days I just survive.

Kaiser is recovering well but the four top teeth that all cut at once in his tiny little chops, are still giving us hell, as is his endless cough!

I’ll confess, I felt a whole heap of ‘mum guilt’ about leaving him with my husband. When my babies’ are unwell I want to be with them, comforting them. I also wanted to be there for my mum to celebrate her sixtieth. I don’t know why I feel the need to explain this, but I did ensure Kaiser’s symptoms were well managed before leaving him to recover with his dad and without mummy cuddles.  

What’s also been really arduous has been talking myself down when feeling anxious, without the support of the community perinatal team helping to keep me in check. My discharge with them was emotional. I have been supported by them for a year and that’s a long time when you’re spending it living day by day, often hour by hour, sometimes minute by minute. I’ve had a few wobbles already and I was only discharged Wednesday, when thinking about moving forward and how I navigate this brave new world on my own I often overthink and find myself panicking. I made great connections with my key-workers’ and whilst there were always clear professional boundaries, it’s not easy letting go of relationships that have served you so well. I felt really truly supported for the first time in my life by professionals, and I’m worried I’ll have to go back to fighting for basic support and healthcare. I write this knowing it could be worse, but always wishing the system was better.

An Instagram post I wrote just a couple of days before discharge

For now I need to get back into the habit of better self care. In recent weeks I’ve resorted back to eating crap, the fact I’m not able to move much again doesn’t help, but it stops now. I’m restarting getting my diabetes coursework back out, along with my DBT handbook and I’m taking action before things spiral again.

I know what I need to do I just need to learn to maintain healthy habits and ditch the many unhealthy ones I seem to find so easy to stick to!

In other news – you may have seen on my ‘News’ page that I’ve been nominated for two awards in the Mental Health Bloggers Awards this year, and I’d really appreciate it if you’d take a few minutes out of your day to give me a vote. Your support continues to mean so much to me. Vote 🗳

Confessions of a chronically ill mum #11

I started out really unhappy writing this one. I’ll forewarn now that it includes some glumness! (Maybe a lot) As ever though, I keep it honest.

The beginning off the week was tough going because I was exhausted from Ciara’s party and already feeling a little run down. Then Wednesday night about midnight I started, (pretty much out of nowhere) vomiting. It was awful, and it went on for 3 days. When the vomiting finally subsided it started coming out of the other end. Vile. And I cried, a lot. It was my birthday Saturday and I spent it in bed, crying. Monday we were due to go on holiday with the kids to Dorset and Shaun began vomiting for over 24 hours, so we weren’t able to make the trip as planned.

Life: It’s just life. And it is! It’s one of those things that can’t be helped or avoided or unpacked, because it just happens, people get sick. But when you get sick on top of your everyday sick, I’m not gonna lie it kicks you a little harder in the kidneys. Vomiting always makes me feel quite heightened anxiety because it’s a involuntary action. I have no control over it, and no power to stop it. I’ll be honest it’s taken a lot from me this week. I’ve felt pissed off at a ruined birthday and genuine frustration at how long my body takes to recover from ‘everyday illness’ whilst managing its’ several chronic illnesses. Taking a bath at my mum’s yesterday to avoid sharing the only bathroom we have at home with Shaun, I felt sick and faint.

Kaiser gave me zero grace in my recovery. He woke up at midnight for 1.5 hours and then again 2-4am both nights whilst Shaun was ill. Again, just life stuff. I keep repeating the ‘it’s just life’ sentence, not because I’m minimising my experience. I’m not. It’s been awful. But because, I have spent many years battling out of the ordinary things. Things like having a baby and spending nine months in therapy because you believed with every ounce of your being that you were crazy, incapable, and unsafe. Things like getting pregnant and suddenly being unable to walk, driving around in a mobility scooter and eating your way to gestational diabetes. Things like never being able to show up because your illnesses’ block you at every turn. Those things are not just life, they’re my life, sure, but they’re not everybodies. Sickness bugs though – they are a free for all and one of the things I learned during my time in therapy, is that I have to give a certain level of acceptance to this everyday stuff and not let it consume me.

I confess that I have always been a person that reacts negatively to stress. Where some people might shrug off the everyday stuff, I take it and wrap it around me in layers. I’ll also go as far as confessing to having used it as excuses over the years. Yet, I’ve also felt the weight of it. Learning to accept certain scenarios doesn’t mean I’m ok with them. Nor does it mean I don’t have to work hard to live through them, it just means, simply - that I have to prioritise peace. 

Moving on from all the sickness, and bugs and life as a disabled mum, for a second…. If you’ve been following me on socials you’ll know that I’m fundraising for IAPMD by way of a raffle. It was my intention to make a fuss about this via my birthday weekend and really try and get some momentum going. Unfortunately, you know what, put paid to that! However I have managed to raise significant funds in the last few days and we’re now on a grand total of £308 smashing my self set target of £250 out of the park. I’m thrilled. And forever grateful to all the strangers on the internet that want to support a cause close to me. Of course my friends and family too, but strangers on the internet are definitely more frivolous with their cheering, that’s for sure! (Just stating an observation, don’t @ me!)

Today, we made it to Dorset. I am still expecting one of the kids to start vomming any second but I shan’t dwell! We drove down this afternoon, made it to the beach for a chippy tea and then holed up in the caravan and listened to the rain pelt it’s tin roof. I didn’t realise how much I needed this break until I arrived here and my shoulders dropped. Tension leaving my body, anxieties being swept up with the spume of the sea, literally. I don’t even apologise for my over the top description of just how sacred this trip is. I needed it, the kids needed it, Shaun, though still feeling fragile, needed it. I hope the bastard that is norovirus and his mate covid manage to stay the fuck away from us for the rest of the week and beyond.

PMDD Lightbulb Moments

This month is premenstrual disorder awareness month and I have teamed up with The International Association Of Premenstrual Disorders as a PMD Awareness Champion. Over the course of the month I’ll be sharing my personal experience of living with PMDD, as well as catching up with other PMDD warriors. This year’s theme is Connect The Dots and I talked to several women I’ve connected with via Instagram to find out how they connected the dots, between their hormones and their mental health.

I asked these brave women three questions which were: 

1. When was your ‘light bulb’ moment?
2. How did you connect the dots?
3. Do you feel as though you’ve found a manageable treatment and if so, would you mind sharing what that is?

I’ve included my own answers below too.

Me, Steph:

I can’t tell you exactly when I knew it was PMDD because hormonal changes have affected me my whole life.

If I look back now I can see how the most traumatic experiences in my life were either in relation to my menstrual cycle or my reaction to such experiences was exacerbated by my hormones and their fluctuating.

For me, I was quite aware of the fact that hormones played a big role in my life and on both my physical health and mood, from a young age. In childhood I had a hormone condition called Premature Adrenarche. PA is diagnosed when your adrenal glands over produce sex hormones. Adrenarche can happen in both male and females, but obviously for females and AFAB individuals, puberty means periods. A lot of my dot connecting came down to PMD’s running in my family, thus having knowledge of them from other sufferers. Since menarche my moods have been severe during luteal, so bad that I was diagnosed with clinical depression at 13 years old and prescribed antidepressants. I also attempted suicide. It wasn’t until some almost ten years later, and I got my first iPhone, that I started cycle tracking using an app. Along with my mum’s knowledge of my symptoms and their severity, we pieced it all together and it became apparent that my symptoms were very obviously cyclical.

Over the years I have had many successes followed by, ultimate failures with treatment. Many treatment options have worked for a limited amount of time, until 𝐏𝐌𝐃𝐃 comes back with a vengeance. For example I’ve tried countless antidepressants and birth control and they have all helped for a period, until they don’t anymore. I can also say it’s definitely worsened in severity and duration since having children. Symptoms have also increased, such as allergies. I’m now allergic to the hair dye I’ve been using for a decade and silver. Migraine is relentless and an attack lasts for days. Treatment wise, I have biweekly B12 injections, try to manage my sugar intake, take SSRI’s month round and use progesterone only contraception – The latter has limited success in the treatment of PMDD, but combined with other methods works ok for me at the moment. What I have found really useful is, since the birth of my son 9 months ago, I have been having intense Dialectal Behavioural Therapy. DBT involves learning distress tolerance skills, and how to dial down the intensity of emotions. Skills include using holistic treatments too such as cold therapy. I really feel DBT has been invaluable in treating symptoms of PMDD particularly.

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Lori:

After giving birth I began mapping how I was feeling along side some cbt for PTSD due to a traumatic birth experience and I started to realise every cycle I was physically and emotionally not well

Research, research, research

CBD oils have been amazing, I live with chronic pain which worsens around my cycle and impacts sleep so these help me get into a deeper sleep, SSRI’s all month too. And lastly, the fitbit app tracking my cycle to rationalise why I’m feeling the way I’m feeling (I can pretty much tell exactly when I’m about to ovulate or bleed based on my emotional state)

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Amy:

For me, it was when I stumbled across the PMDD Information page on the Mind website.

After years of various tests and being told by the doctor that I’m ‘fine’ this was huge. I ticked every single box for PMDD symptoms and I just knew that this was what I was going through each month.

I went back to the doctor armed with this new knowledge plus a symptom diary that i’d been keeping for the previous 6 months and they agreed that the diagnosis was PMDD.

Yes. But it’s just sticking to it that’s the problem! My go to treatments are regular B12 injections, keeping on top of my SSRI intake, Ice hats, pain medication, plus loads of water and trying to cut down on sugar and fatty foods (even though this can seem like the most impossible task in the universe, during hell week!)

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Jaimie:

My lightbulb moment came when the doctors kept telling me I was ‘just’ depressed and giving me SSRI’s and the pill and wouldn’t listen that I only felt this way some of the time rather than fully. Hormonal contraceptives do not agree with me and I knew there was more to it than that but trusted them that they know what they’re doing.

It took a long time but I noticed that I felt immediately relieved and lighter as soon as my period started so good old google came to the rescue and I started reading about PMDD

I felt like for the first time what I had been going through was valid and real when no one seemed to believe me or understand.

I just don’t know how bad each cycle is going to be, however I did find an SSRI useful for a while, they’re not for everyone and I no longer take them. I’ve found that taking things easier/slowing down and planning things for the parts of my cycle where I know I’ll be more positive and less likely to cancel helps because I don’t then feel like I’m letting people down or being unreliable which is a big thing for me – getting outside whenever you can works wonders too even if you don’t feel like it or it’s raining being in nature does more good than people realise

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Maisie:

My light bulb moment was when I was with my ex partner and he called me a psychopath. I was so upset and angry that I punched a hole in the wall. I scared myself with how angry I got. I was so angry that he called me that, but it made me think about what I had done to warrant that, and I thought “shit, I’m not a psychopath, but I’m not myself either, somewhere in between maybe”. It was going round and round in my head, and for a few days every month leading up to my period, I was so deeply upset, I didn’t want to be here, and it was like a cycle that I couldn’t get out of. Why am I like this? This isn’t me. But in the moment, I couldn’t see it.

It wasn’t until I was out the other side of those few days that I could reflect on my behaviour and feelings and realise properly that it ISNT me! I spoke to my GP, who put it down to “bad periods”.

I told them this wasn’t just bad periods, bad periods don’t make you suicidal, aggressive, or run away. Bad periods are tummy cramps and a heavy flow.

I pushed for more help, tests, anything. I was advised to have therapy for my dark thoughts, and they prescribed me SSRI’s. After I gave birth, they changed me to ca different SRRI. But the main help for me is telling my close people “it’s coming” or “it’s happening”. I find myself apologising in advance. “I’m not going to be myself for the next few days and I’m sorry”. Which makes me even more frustrated. No one that I have met so far, has ever heard of PMDD. Except a few queens on Insta! I try to explain it to people by saying “it’s like the volume is turned up full blast on everything. My emotions, the hurt, the anger.” You could say something to me on a normal day and I’d brush it off. But say the same thing to me on those few days and my world comes crashing down. The best treatment I’ve found more than telling people, or medication, or therapy, is reminding myself that it’s all in my head. Sometimes that can be hard, and it doesn’t take the thoughts or sadness or anger away, but it makes them more bearable, knowing that I am ill, not crazy. My ex partner didn’t help, but now he’s gone it’s so much clearer to see. I’m poorly. I have been diagnosed with PMDD, it’s not just in my head but at the same time that’s all it is. Finding others who are going through the same thing and trying to raise awareness for PMDD to others as well as medical professionals helps too. I felt like I was going mad, because I was told I was, and felt like I was. But it was all in my head and that’s where it stays. Like you say (sic) Cunty Carol just comes to visit a few days a week, and where I used to be terrified of her unpredictability, now I can at least say “fuck off Carol, I know why you’re here and I’m okay with it, close the door on your way out”

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Confessions of a chronically ill mum #7

We started well. The weekend the kids and I went for a short walk on our own. This was a big deal because I rarely go out alone these days, and it was the first time I’d been out on foot with both children. As my health has worsened so dramatically in recent months, I have developed quite significant, but understandable, health anxiety! I took the win Saturday, rested in the afternoon and woke up Sunday ready to attack the day. But it didn’t quite work out like that. I woke up feeling extremely fatigued to the point where I couldn’t keep my eyes open and had to have a nap mid afternoon. For most of us with fibromyalgia this is normal, particularly following a day in which we’re more active. However, for me, fatigue is also a symptom of the pro-drome phase of migraine.

Being the hormonal mess that I am, I have noticed migraine attacks increasing in frequency again in the last two months. 2am Monday morning I was woken by the head pain, swiftly followed by cold sweats, hectic fever and vomiting. Monday was a write off. I spent all day in bed unable to watch tv or read and silently crying in between naps. I’ve said it before, but migraine is the most debilitating symptom for me, even more so than not being able to walk well, because migraine is a complex neurological disease that affects everything!

Fast forward to today, Thursday and I am feeling better. Not by any means ‘well’ but I was able to get out yesterday and I haven’t needed my husband to stay home from work to care for me. I also managed to get out this afternoon even though I couldn’t think of anything worse at the time I forced myself to do it and I have to say…. I’m converted. All the times people said to me ‘you need to get out’ while I led in my bed riddled with pain and anxiety, I thought those people were prize pricks to be honest, but I can see there’s merit there. I will say it’s not as simple as just getting outside when you live with chronic and or mental illness, and even in motherhood it can be hard to just get up and out. Let’s be real here it takes longer to wrestle a screaming baby into the buggy and pack your nappy bag than it does to do your weekly shop! But if you can get outside, you may benefit to some degree. For me the benefits are:

  • It’s a scenery change from the monotony of mum life.
  • I feel a sense of achievement if I’ve been able to do something, even if it’s as simple as popping to the shops.
  • That sense of achievement rewards me with feel good endorphins.
  • It’s so much easier (for me anyway) to be ‘present’ whilst in nature and not dwell on negative thoughts.
  • It’s free!

During pregnancy when I ate every meal in bed and couldn’t get down the stairs, going out was not only a physical impossibility, but it became mentally terrifying. I avoided leaving the house for so long, doing it now feels alien, but it also feels good. I feel like I’m taking back some control.

I don’t have any major confessions this week, other than I’ve spent a lot of it feeling sorry for myself and on occasion a little bitter about how shit and unpredictable life can be when you’re unwell. I’m worried about how I’m going to do my job in a few months when I’ve already cancelled a Keeping In Touch Day because I was so unwell. However, those feelings were scuppered by guilt as they always are when I look at the bigger picture and remind myself how lucky I am to have the life I do. I’ve also learnt that life is more fun and fulfilling when you’re grateful for the tiny things. Like a hot cup of tea or getting into bed with a good book.  Kaiser, my youngest, is an absolute rogue. I’ve had to take deep breaths a plenty in the last couple of days whilst trying to stop him climbing the stairs and then throwing himself down them. Dunno if this is a boy thing but fuck, it’s hard work. 

It’s easy for me to write this today because today has been such a huge improvement opposed to earlier in the week. That’s not to say I won’t feel the sadness and resentment again in the near future, but it means today I choose happy. We don’t always get a choice, and so on the days that we are gifted one, we have a responsibility to ourselves, to make it a good one.

Included at the bottom of this page is a link to ‘Buy Me A Coffee’ (or book, in my case) please don’t be put off by this!
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 #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.