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! 💙

Confessions Of A Chronically Ill Mum #18

It’s been a while since I’ve written an insert of COACIM. I’ve been busy, trying to keep PMDD under control alongside parenting a riot of a toddler, a somewhat sulky six year old…. Summer holidays and work. So I guess you could say I’ve been ‘doing life.’ For the most part doing life has been good, the summer has been busy and full of adventure. The downside being, I’m still not (and never will be) able to do everything I want to do because of my health, both physical and mental. The limitations it has on my overall well-being might have lessened somewhat but is still profound. However, I’m so grateful, now more than ever for all of the things I can do!!

Since starting HRT I’ve noticed an increase in energy and my ability to move more freely. My joint functionality and all over flare up time is less than it was before commencing hormone replacement. PMDD episodes are shorter too (though not necessarily less intense) I won’t go into too much detail about that now, because there’ll be a separate HRT update shortly. For now, there’s so much else I want to say.

Emotionally, I’m riding the waves while trying to savour every moment we get to enjoy as a family.

My confession this week, is that I’ve realised, in recent months since adding in a few evening plans, just how much I miss dancing. I’ve had two occasions where I’ve been out and there’s been music. The first one was with Shaun, we went to Cardiff to watch The Libertines. They are one of our mutual music loves and it was a long anticipated gig. Thankfully the venue sorted us out with accessible seating and this was in an area with enough room to dance if you wanted to. Though I soon realised, I can’t. I can no longer move freely without pain. Even the ‘dancing’ I can manage, such as waving my arms in the air, causes me pain. While I may be able to walk a little further than I could before (and this is great) I still cannot remain standing for more than a few minutes, and sadly, I definitely can’t dance, at all really! When I realised this I became quite upset. Because let’s be real there’s nothing quite like being able to dance it out. (Fans of Greys anatomy will appreciate the reference) Like I said, I am trying to focus on what I can do as opposed to what I can’t, but it still irks and hurts and leaves an adverse feeling in the pit of my stomach.

The second music shindig I attended was Meatloaf inspired musical Bat Out Of Hell. The show was phenomenal, but again I couldn’t move much. As with standing, I find being seated for long periods really uncomfortable too. Driving is agony and I’m only really comfortable when I’m slowly walking or led down. This can put a real spanner in the social life of a music lover. Yesterday I spent hours nostalgically reminiscent of the bank holiday weekends I’d spend at all day music concerts and outdoor day festivals. Some of this nostalgia was not just mobility related though. I’ve been struggling with the kids in general over the last few days. As the end of my cycle closes in the misophonia creeps out and my tolerance levels reduce to almost zero. I’m snappy and so fatigued I can barely keep my eyes open. Meanwhile, both of my children are charging around like bulls in proverbial china shops, shouting at the top of their small-but-mighty lungs!

Parenting is hard. You don’t need a blog post to tell you that. What I will tell you is that it feels twice as hard when you’re operating on no sleep, struggling to move, and your brain is prisoner to the fluctuations of your own bodily hormones. I don’t want to muddy the waters because we really have had a lush summer. We’ve crammed in a lot and near crippled ourselves financially (and that was on a tight budget) but there are so many memories from this time we’ll keep. No matter how nice it’s been though, I know I’m not the only mum who can’t wait for routine and early nights to resume.

Another confession is that I’ve been feeling uneasy about using my disabled badge and sunflower lanyard. When attending The Libertines gig I had access to the disabled toilets so that I didn’t need to queue in long wait times for the loo. This was necessary because as mentioned - standing for long periods causes me a lot of pain! Despite the necessity I still felt as though I was being judged. Groups of men kept trying to get into the disabled toilets after me and even said the dreaded words ‘There’s nothing wrong with you’ to my face. It’s a confrontation that I just don’t want to be having whilst I’m more than capable of telling them to fuck off and stating my rights as a disabled person, I don’t want to. I instead want to be able to enjoy my night out with ease and not fear the need to defend myself against other people’s ignorance. 

Please remember that not all disabilities are visible. Not everyone whom is disabled will appear to be, and with risk of sounding really glum here, it could be you one day. None of us are immune to ill health and injury. You don’t even have to be kind if it really pains you to do so, you just have to mind your own business.

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.

Disability Pride

Disability Pride Month can mean various things to each individual in the disabled community.

Some people may see the month as a time to celebrate their individual success and accomplishments, whereas others may celebrate the feeling of pride about being disabled.

https://www.inclusiveemployers.co.uk

Have you heard about Disability Pride? Honestly, it wasn’t until a few years into my diagnosis that I first heard of it myself. Though I think that’s because I wasn’t referring to myself as disabled back then, despite spending weeks at a time in bed, wracked with pain and requiring months and months off from work. Unable to function without help, everyday activities became once in a blue moon activities. There have been many times over the last six or so years that I’ve been too unwell to dress myself or shower. Not as a one off, but consistently for long periods of time. At times I’ve been too disabled to work and to walk. My own disability pride has arrived, but only after battling years of internalised ableism.

I was once a person that believed disabilities were -for the majority at least- visible. I believed you had to have a permanent wheelchair or an aid, a prosthetic or an obvious disfigurement to be considered disabled.

I believed if you were depressed you had to look depressed (whatever that looks like) Despite myself suffering from mental ill health since childhood, I still had this idea that mental illness meant being obviously and outwardly ‘crazy.’ (I use this term to poke fun at my own misconceptions and it is not intended to cause offence.)

I’m here today to say, I was wrong. Not only was this way of thinking disrespectful to minority groups including those with disabilities, it was wholly inaccurate, and it was disrespectful to myself. I spent a lifetime playing down my own experiences, symptoms and health issues, because there was no way I was possibly suffering as much as someone else. But there’s an issue with the notion that other people have it worse and therefore we must ‘suck it up’ and the issue is that it’s harmful. It’s harmful because it attempts to invalidate a person’s suffering. Someone will always have it worse, we know this without a doubt, but to apply that to a person’s suffering (including your own) leaves us open to discrimination, feelings of shame and guilty whilst also furthering to escalate mental health issues.

Disability pride means celebrating all disabled persons regardless of the severity of their disability or it’s visibility. Not everyone who becomes disabled will remain so forever, though many people with chronic and ongoing illnesses will be impacted enough by their conditions to be considered disabled.

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

https://www.gov.uk/definition-of-disability-under-equality-act-2010

My battle with internalised ableism is an ongoing one. Despite feeling more comfortable, open and able to discuss my health and it’s effects on my life, I still feel some guilt around doing so. I feel as if I am seen to be attention seeking if I tell the truth about how my illnesses affect me. There’s a real crossover between being positive and not focusing on all of the things you can’t do, and downplaying symptoms to appear more positive to the outside world.

In 2020 around 20% of the working population reported disabilities. This number, though higher than previous years, is still disproportionately low, considering more than 1 in 5 of us are affected by disabilities in the UK. It is unfortunately more likely that disabled people don’t feel able or comfortable disclosing their disability to their employers. Disability pride is a great way to celebrate disabled people for whom we are. As well as raise awareness, and shine a spotlight on discriminations such as the disability pay gap and lack of world wide accessibility in the work place.

The purpose of DP is to highlight that a disability can have a significant impact on a person’s life, whatever the cause and regardless of its visibility. It also encourages more people to be proud of their disabilities. Perhaps you’re like me, and find it hard to pride yourself on things that have felt traumatic, debilitating and painful. Or perhaps you are proud of how far you’ve come, in spite of, or alongside your disabilities. Perhaps, you’re just proud you’ve managed to stay alive. And that’s ok too.

Disabled people are almost twice as likely to be unemployed as non-disabled people, and 3 times as likely to be economically inactive

https://www.scope.org.uk/media/disability-facts-figures/
Disability Pride Flag
The charcoal background – to represent those in the community who have been subjected to ableist violence, as well as representing protest in the community.
The “band/road” shape – represents how disabled people face barriers and have to navigate their life according to them. The different colours in the shape represent the creativity in navigating life, and how the community is breaking free from stigmatisation.
The colours – represent the various experiences and needs (mental illness, developmental disability, invisible disabilities, physical disabilities and sensory disabilities) in the disabled community.

There are many ways you can still get involved in disability pride month. Sharing on social media, writing your story, and talking to your employer about supporting disability pride, are all great places to start.

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

Reasons You Should Track Your Menstrual Cycle

One of the things I get asked occasionally when discussing PMDD and how I manage it, is how I track my menstrual cycle. Now, I know, as a writer, I should probably favour good old fashioned pen and paper, but instead I prefer to use an app. It’s quick and easy, and all the information you need is available at your fingertips. I’ll go into more detail about which app I use and why, shortly, but first a few reasons why you should track your menstrual cycle.

THE WHY IF YOU HAVE A PREMENSTRUAL DISORDER….

There are many reasons why you might wish to start tracking your menstrual cycle, or maybe you haven’t been considering it previously at all. Either way, here’s a few core points as to why you might start. Not all of them are relevant to PMDD, but if you do have PMDD see this as a reminder that in order to gain access to adequate treatment, and or diagnosis, you really need to have tracked your cycle for a minimum of two months (or two previous cycles.)

The reason being, cycles as we know, change, with hormones fluctuating regularly. When living with PMDD specifically I would (personally) recommend cycle tracking to have taken place for a minimum of three to six months. Because, as a consequence of hormone fluctuations, symptoms will too fluctuate and it’s important, for diagnostic purposes, to note the severity in symptoms and whether they occur frequently or ad hoc. It’s also useful for you individually to note how long your PMDD episodes last, their impact on your life, and whether normal every day activities are compromised. PMDD doesn’t only come with psychological symptoms, despite it being a hormone based mood disorder. Many persons with PMDD also experience a range of more prominent physical symptoms than those with PMS. And all of that’s without really delving into the influence they have on our moods and mental health. IAPMD recently published a study showing that an alarming 34% of persons with a menstrual disorder such as PMDD will attempt suicide. If you have been feeling depressed, anxious or dealing with intrusive thoughts, see a health care provider as soon as possible and start cycle tracking. It’s a really useful tool in determining if your symptoms could be related to, or be exacerbated by hormonal changes and your period.

THE WHY IF YOU HAVE A NORMAL CYCLE….

If you’re someone who has never experienced menstrual health issues, you might be wondering why you’d bother to track your menstrual cycle. Surely if your period arrives like clockwork every month with minimal impact on your life, cycle tracking is an unnecessary chore? Well…not necessarily. The purpose of tracking your menstrual cycle is a personal one, but many people still want to get ahead of aunt Flow’s monthly visit, and keeping track is a great way to do it. You may be planning a holiday in advance and having tracked your cycle for the last few months is more likely to give you an accurate prediction of when a future cycle is likely to end and your period start. You may be keen to learn when you’re likely to ovulate. Again, this is more likely to be accurate if you are regularly keeping track of when you bleed. Many people now use cycle tracking as a medicinal birth control alternative, as well as when planning pregnancy. Perhaps your period has always been regular but now isn’t. Could you be pregnant? Is it peri menopause or even menopause itself? You might also be experiencing symptoms that you are completely unaware could be caused or exacerbated by hormonal fluctuations. Did you know common illnesses such as colds and sort throats can also be caused by hormonal changes including being premenstrual? Learn more about ‘period flu’ here. It’s even possible you’ve developed random hives, or your hay-fever is much worse. When you are cycle tracking though, looking back at the calendar you can pinpoint when this is likely to occur in future and potentially prevent the impact. Perhaps your migraine attacks have worsened or increased despite avoiding your usual triggers. Aches and pains have been bothering you, and fatigue is something you’ve been sure is just ‘normal tiredness’ but has become overwhelming recently.

Hormones affect so much of our bodily functioning and have the power to better or worsen how we feel much of the time. Without tracking your cycle it’s simply impossible to know if physical symptoms you could be putting down to everyday problems, are actually linked to hormonal fluctuations, imbalances, sensitivities, and in some cases more serious illnesses such as PMDD, endometriosis or poly-cystic ovarian syndrome and even some cancers.

HOW DO I TRACK MY CYCLE?

There are infinite ways you can cycle track. Of course, as previously mentioned, good old fashioned pen and paper AKA a wall calendar or diary, will suffice. Just be sure to be consistent with diarising your symptoms and how they affect you. Specific menstrual health diaries are available to purchase on Amazon too.

The reasons I personally choose to track using an app are: it’s quicker, you can set reminders to prompt you to log symptoms, and even add medication prompts on some. Ovulation prediction is easier via an app too, it does it for you based on your previous two cycles. The App I use and have always used is simply called Period Tracker and is free via AppStore it has all the above features and also includes a place to diarise what’s going on, or leave yourself notes. Other common favourites seem to be FitBit and using your phone’s built in calendar, adding emojis to describe mood and notes for symptoms. There are so many to choose from though, plenty of options to make finding the one that works best for you easy!Typing in key words such as menstruation or period in your preferred App Store will allow you to see which ones are available on your device. As ever the infinite wealth of resources available via IAPMD is also a fantastic place to start. They have a self screen tool for people who feel their symptoms could be related to PMDD or PME. Diagnostic criteria and advice as well as symptom tracker sheets specifically designed for PMDD. You can access all of their resources via this link

I personally use a cycle tracker to prevent, reflect, prepare and manage my periods and their impact on my life and abilities. It helps me understand why I might be feeling a certain way and is also a useful tool when presenting symptoms to healthcare professionals. Good luck, ‘appy tracking!

Disclaimer: Everything mentioned in this post, including the links and suggestions, are my own personal experiences, opinions and preferences, and are not affiliated in any way with the websites or brands mentioned.

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

Confessions of a chronically ill mum #14

It’s Tuesday and yesterday wasn’t a great day. I’ve been doing lots lately, socialising and catching up with friends, rearranging things that were supposed to happen around my birthday in April, but couldn’t go ahead because of sickness. Along with my mum’s sixtieth earlier this month. I’ve been out and about a lot. What should be, and is, a treat to most of us, costs me a lot physically and emotionally. That became paramount yesterday when I suffered my first panic attack in months upon waking. My thoughts were whizzing through my brain so fast I was getting snippets of memories that I couldn’t latch on to and feeling like I had zoned out. I told Shaun I was too afraid to be home with the kids on my own and that he would need to stay home too. After a short while that felt like a looooong while, I regained some composure. I acknowledged what I was feeling and thought about all of the discussions I’d had previously with the mental health team about how to rationalise my thoughts. I used distraction techniques learned in DBT too.

After that short while, I felt well enough to engage with the children and told Shaun I would be ok and for him to go to work. Then I did what I always do when I’m feeling anxious, I checked my period tracker. Now, the period tracker is doing half a job at the moment, because I’m no longer having a period in the blood shedding sense, but I am very much still suffering cyclically with PMDD. I’ve had random bleeds recently that have upset the original equilibrium of follicular and luteal. To be honest I dunno whether I’m coming or going! I blame the hormones.

But, and it’s a relevant but, I also did something brave. I reached out to The Pmdd Collective. The collective is a group of health and well-being practitioners that are PMDD informed and provide both psychotherapy and peer support to the PMDD community. Please do check out their website and Instagram page to stay up to date with all the amazing work they are doing, including offering reduced priced therapy sessions, PMDD focused poetry groups and much more.

After writing a message to Emily, a founding member of the collective via instagram, I realised in fact, the panic attack probably didn’t come out of nowhere. My discharge from the mental health team has been a heavy weight, mainly because of not being able to get any support whatsoever from my GP, despite my complaints and self advocacy. So I have felt a little lost and out on a limb. My hormones, of course are there, fluctuating and torturing me whilst they’re at it. My kids, are exhausting, and my body cannot often keep up with the physical demands required, to chase around a prewalker hellbent on making himself a Jason Statham stunt double. My pelvis has been agony lately, making even sitting excruciatingly painful and that’s more of an issue now that I’m back to work. It’s been a minute, and settling back in to routine whilst managing symptoms 24/7 and children and life, hasn’t been easy. Despite my employers being really supportive and attempting to make the transition smooth for me. My social life has turned up a notch and I’ve had to suffer the pain and fatigue, migraine and mouth ulcer, repercussions of having a social life as chronically hormonal and chronically sick person.

Lastly, the most notable reason for my panic yesterday was, I had a hospital appointment at 10am. A heart scan that will determine the function of my heart and either diagnose or debunk the original theory that I may have heart disease.

So I guess you could say, maybe it’s not that surprising or out of nowhere to have suffered a panic attack yesterday morning.

As always with these musings though, I like to try and think about the positives. I believe this counts as my confession, because I’m finally confessing to the belief that positivity can and does exist alongside all of the other shit! Here’s a little list of yesterdays positives for clarification.

  • I got through the panic attack. Without taking medication. I used skills I’ve learned and listened to voices I’ve heard before (in my head) teach me how to sit with these feelings for a while.
  • I got another perspective from Emily. It wasn’t about reassurance seeking, but rather a different viewpoint.
  • Writing it down, helped.
  • I danced (upper body only obvs) with the kids in the kitchen to The Specials, as a distraction technique and to boost endorphins.
  • I went into my hospital appointment strong. I have no control over the results so much like the breast clinic appointments I was having recently, I reminded myself not to panic about things that are out of my control.
  • I didn’t go crazy because of a panic attack.
  • My wise mind kicked in and I was able to calm myself down, something I haven’t been able to do on my own in 11 months.
  • The kids are both, alive, happy and loved. I’m doing a good job.

I know I’ve crammed a lot in, and much of it sounds negative, but it’s not all bad. I’m really grateful that I’ve been able to see my friends again more often recently, it’s been a wholesome experience. I just need to pace the social aspects of my life better. I’m grateful that I still have friends that want to spend time with me and invite me places. I’m grateful to have been able to go for walks with my mum and the kids, and I’m grateful to have spent some time as a family with Shaun and the kids. I’m also grateful to be shipping them (the kids) off to their other Nanny’s house on Thursday for the night because, Jesus, looking after Kaiser is like raising an unruly hyena cub, or at least what I imagine that to be like.

Life isn’t bad. Rough somedays, yes. But not bad. Ciara and I have talked a lot recently about extracting the good from the days. We’ve spent some time working through emotions and of course I have a husband who has his shit together and shares the load. Here’s where I say, probably not often enough, that I am grateful for him, too.

My Family

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 #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 #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.

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