Health

Subtle break-throughs

November 26, 2021 — Leave a comment

If you suffer from anxiety, or the feeling of impending doom and inexplicable terror that comes with panic attacks, the debilitating calamity that is intrusive thoughts, the unrelenting personality shift before your menstrual cycle because of PMDD? I hear you. I see you. I am you.

If you suffer from one or all of the mental illnesses mentioned above, you will know that logic is about as far away from fear as is possible. You may as well fly a rocket to Mars and you’d be no closer to logical thoughts during a panic attack. I’ve been having therapy for five months. The single longest stint I’ve ever managed to stick at anything relating to my mental health that doesn’t come in a blister pack. Full disclosure I take the pills too, I need them, but therapy is a different level of healing. It’s eye opening, confronting and real hard graft.

During these five months I have had breakdowns, many breakdowns. I have also experienced breakthroughs. These tend to be subtler, less outwardly monumental, but I can tell you from experience they are transcendent and quite awe-inspiring when you become aware of them.

I’m going to give you an example of one of my recent breakthroughs.

I am currently waiting for several hospital appointments, one of them may end up being quite life defining so it’s pretty important. With anything of importance for me, almost always comes anxiety. Throw in a self diagnosed terminal illness via Dr Google and we’re talking full blown life limiting panic attacks. But, not this time. I got my appointment letter a few days after the referral was made, though supposed to be seen within two weeks the NHS backlog means the clinic are running two weeks behind. Where as this kind of delay would usually lead to more panic, endless overthinking and probable sleepless nights, something has shifted in me and I feel different.

My logical brain has always known that there is little point in worrying about something that hasn’t happened yet, but regardless of my knowledge I have never been able to stop myself from said worry.

Worrying about tomorrow, steals today’s joy.

After going through what I have in the last five months, being scared of my own brain and constantly coming up against new challenges in trying to change the way I think, I decided right at the beginning of my recovery that I no longer wanted to live in fear. Of course simply not wanting something isn’t usually enough to stop it from happening. But with subtle changes and a keen desire to get better, engaging and working hard during therapy sessions and opening up fully to my mental health team, I have noticed a shift. I still feel anxiety around the appointment of course, but anxiety itself is a normal healthy human response. It only becomes problematic when it interferes with our everyday lives. And in this instance, relating to this appointment….I’m so happy to say it’s not doing that.

I don’t want to waste time worrying about an outcome that I cannot predict or influence. I don’t want to fear the worst only to find out when the time comes that it’s not the worst, then look back regretfully that I had wasted precious moments living in fear.

What if it isn’t a tiger in the long grass? What if it’s just a fluffy little kitten?

I won’t bullshit you, I know I’m not always going to be able to rationalise in this way. So many factors contribute to my own personal experience with anxiety and panic, that there will inevitably be times when I falter, and times when I fall. But what I’m doing right now, today, is I’m saying no to worrying about things that aren’t within my control. Isn’t anxiety itself a deep rooted need to control our fears and possible catastrophes?

How did I get here?

  • I took on board the offerings of tips my therapist suggested, such as grounding and breathing techniques and practised them even when I didn’t believe in them.
  • I reminded myself that if there’s a possibility that my world might fall apart, there’s also a possibility, it won’t.
  • I take prescribed medication religiously and stick with it for the recommended amount of time.
  • I’m trying, I say trying because I don’t always succeed, to implement healthier lifestyle changes, such as getting more exercise and eating healthier.
  • I write my feelings. It’s a personal favourite in helping me to process them.
  • I try to stay more in the present moment.
  • I have an amazing mental health team that I talk to regularly, even when I don’t think I have anything to say.

I know these things aren’t easy to do, I know this because it’s taken me twenty years to even begin to start really healing. But along with the above list, I also believe that celebrating small wins is a great way to remind ourselves that even when we are not where we want to be, we are further forward than we once were.

Me this week on a particularly bad day. Reminding myself it’s just a bad day not a bad life.
Also me this week on a better day

To my friends (and family) who don’t have fibromyalgia.

April 20, 2021 — 4 Comments

Hey,

Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it ‘gets old’ boring even, to hear me talk about it ALL. THE. TIME. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is…. I’ll always have this condition now.

A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathising, I’m learning to be ok with that. I have to be. Yes it hurts my feelings, even when I don’t tell you it does, and when I do.

It hurts my feelings when you ignore the honesty of my illness related posts, and only engage in the cute pictures of my kid. It hurts my feelings when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything.

You see, this illness makes me irritable, I get angry with my body, often. On some days, better days I might seem totally ‘normal’ I might even resemble ‘the old me’ but please know, that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today, might affect me tomorrow or days later, for days, sometimes weeks after the event.

I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you, I’m not doing though, is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterwards. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, that you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me.

I am not broken, not entirely, I’m just bent, learning to live again (almost a quote from a P!nk song there) Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you I’ll always be able to fulfil them. Just know, when I make them, it’s always with the best intentions. I’m trying, all the time, new ways to manage this condition. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am.

I wish I could go back in time and do more things with you before I got sick, but sadly time travelling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain.

If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before.

If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one. Like life itself – It’s a work in progress. And I’m forever trying to be better than I was yesterday.

Love, me X

Call for NICE to play nice with chronic pain sufferers!

April 8, 2021 — 4 Comments

For full transparency here is the article NICE published in relation to using alternative methods to treat chronic primary pain that has no known cause. NICE recommends

For the most part this starts well, offering people a range of alternative treatments in place of a prescription doesn’t sound so bad does it?

The issues here though, are plenty if you do in fact live with chronic pain. Many sufferers will have a) already tried alternative treatment options. Or b) Are still awaiting a diagnosis in the first place.

We know the opioid crisis is real, we know there’s a risk of addiction and dependency, most of us would give anything for adequate relief found elsewhere, but opiates aren’t the only treatment option available that’s in dispute here. Standard analgesics such as paracetamol and Non Steroidal Anti Inflammatory Drugs are also being branded ineffectual. What is particularly damaging is the statement from Dr Crisp that suggests pain relief doesn’t work to treat chronic pain, and antidepressants do.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them”

I’ve come to know many chronic pain sufferers that are indeed already prescribed antidepressants as an addition to pain relief for chronic pain. I’m yet to know any that find these effective in place of further treatment. I also know many people who benefit from holistic therapies and exercise and diet for pain management. The problem here is the assumption that everyone or nobody benefits from one type of treatment. NICE make some very encouraging points in the idea that collaborative discussion with patients will play a role in deciding treatment, sadly what it then does is states pain relief won’t be offered initially, leaving many people awaiting a diagnosis in agony.

If you’ve suffered chronic pain ongoing and for a long period it’s likely you will be hoping for a diagnosis. NICE addresses here that the prognosis isn’t always simple and a true diagnosis other than pain itself can be hard to find on occasion. Another of my issues with this statement is, people who are seeking diagnosis will be further fobbed off and advised their pain has no known cause without a full and thorough investigation being carried out. It also indicates that addiction to painkillers is commonplace, as opposed to people taking them in order to function and live a more fulfilling life.

Furthermore suggesting antidepressants come without similar risk or harm is also damaging. I have taken antidepressants and opiate pain medication on and off for twenty years, I’ve experienced withdrawal for both and I personally found antidepressant withdrawal a much more hellish experience, that said I don’t speak for everyone and I’m fully in support of medication being commonplace to treat mental health issues. What I’d also like is to not be branded or implied an addict for taking medication to treat pain.

I don’t dispute that alternative options to medication should be commonplace. My fear is the removal of treatment or the lack of prescribing in the first instance will lead to untold suffering and the search for pain relief elsewhere. Potentially from illegal drugs and under researched off label medications. You only have to look at Twitter to see the outrage from people in the chronically ill community to understand that this will impact us significantly.

As a mother and an expectant one it would be idealistic to not have a need for medication at all, but I like many other sufferers have tried countless attempts at reduction and abstinence. It doesn’t work, because my pain is physical and it’s real. To suggest psychological therapies in place of a prescription is another way of suggesting our pain is psychosomatic and not physical. Yet upon first analysis you couldn’t possibly know that to be the case. I don’t disagree that better information needs to be given as standard, that alternative medicine should be available on the NHS as standard and that exercise and diet are all impacting factors. I do however, disagree with the statement suggesting pain relief doesn’t work for chronic pain. Granted it won’t work for everyone, and granted NICE have advised individual plans will be made, but how many of us already feel judged on how we manage our health? I know I do, and I know hundreds of other people that do too. What would have been really nice is for NICE to include alternative therapies as standard without pillshaming people already taking medication or those seeking adequate investigations and subsequent pain relief.

Yes I have launched a petition and yes I have indeed read the guidance offered and I still feel strongly for the need for this advice to be overhauled and at the very least reworded in a more sensitive and less ableist fashion.

Not everyone can exercise. Not everyone can access alternative health care and not everyone will become an addict when treating their pain with painkillers even long term.

The petition is currently in review and will be shared when and if it goes live. I’ve also emailed NICE directly for clarification and I hope they are able to address the concerns of those of us that have voiced them.

I also feel the need to state: I am not suggesting everyone take pain medication for the rest of their lives to treat chronic and ongoing pain, I’m simply asking that we don’t have the option taken away from us.

PMDD and pregnancy

April 6, 2021 — Leave a comment

April is PMDD Awareness Month and it’s something I’ve not talked about much since becoming pregnant again. PMDD directly corresponds with your menstrual cycle so in theory you should gain relief during pregnancy. However, and this is not fact, merely my personal experience, since PMDD causes an abnormal reaction to normal hormonal changes, whilst you may receive some relief during pregnancy it’s possible you still have a sensitivity to hormone fluctuations. As has been the case for me. Some symptoms are worse than ever before, particularly migraine and feelings of hopelessness.

The first trimester is often the worst for lots of pregnant women even in the absence of PMDD, the severity in hormonal changes tend to happen early in pregnancy and level out as your body becomes accustomed. It’s also thought women who suffer perinatal/postnatal depression may be at further risk for developing PMDD, and I can concur that the dip in hormones post pregnancy deeply affected me the first time around. With PMDD age has been another factor which effects the severity in symptoms for me personally. The older I get the worse my symptoms become. Often it has been the case for me where hormonal therapy such as contraception will provide short term relief only to later stop working with no rhyme or reason. Antidepressant medication can also help manage symptoms but again, long term they often need changing and finding the right type and dosage is a lot of trial and error.

After menarche, my PMDD was prominent, but back then at the age of just eleven nobody took my severe mood fluctuations seriously. At thirteen after attempting suicide I was prescribed antidepressants. It was only later when I started diarising my depression and severe mood swings that often included rage and toxic outbursts that I made the connection between them and my periods. Growing up, soon after enrolling in infants school and before menstruation, I was diagnosed with the hormone imbalance premature adrenarche. Though there is no scientific connection between PA and PMDD I feel this was all part of the same affliction, sensitivity to hormone changes affect me in a major way.

PMDD shouldn’t impact pregnancy in the sense that it alone won’t impact your ability to conceive. However trying for a baby whilst managing PMDD can be difficult, especially if you’re taking contraceptives to manage your symptoms, and or antidepressants. Fluoxetine or Prozac as it’s also known, is one of the more favourable SSRI’s for PMDD treatment. However it’s not recommended for pregnant women and therefore you may be asked to switch to a safer antidepressant or come off of them all together. This in itself can be a life altering (and in some cases life threatening) change that could impact your mental health during pregnancy too.

If your PMDD is severe and not responsive to treatment you may have considered sterilisation, which of course can put added pressure on you if you want to conceive. You might feel like you’re running out of time or you might feel forced to make the decision not to have children at all in order to manage your condition.

Though classified as a mental illness PMDD has many physical symptoms including joint paint, migraine and profound fatigue, that can often be mistaken or overlap with other illnesses, in my case my fibromyalgia is much worse when PMDD strikes and I know many other sufferers often get diagnosed with secondary conditions as a result of living with PMDD too.

Looking after your mental health must alway be a priority including during pregnancy, but it’s scary when you’re offered conflicting information and promises of symptom relief aren’t helpful either. ‘At least you get a break from PMDD’ is one of the most useless reassurances I’ve ever heard. Surely we know by now that even those of us with the same diagnoses will experience symptoms differently and bodily changes will impact us all in different ways. Pregnancy is one of the most obvious examples of this. Some women barely know they’re pregnant at all and others (like myself) find the process insufferable.

What’s important when considering all factors is finding a healthcare practitioner that is aware of your diagnoses and if they aren’t up to speed on what it means. They need to be willing to learn. When I found out I was pregnant this time I specifically asked to be cared for by the perinatal mental health team, this has included regular discussions with a mental health consultant that specialises in reproductive health. It’s been invaluable for me to know that I have people on my healthcare team that understand and are knowledgeable in helping me look after myself during pregnancy. My most recent appointment with the consultant included discussions around further specialist referral for PMDD post pregnancy, and also the need for me to be prescribed antidepressants again post natal. Even if I don’t feel I need them I have a prescription ready and a doctor who is helping me monitor the impact.

Pregnancy is hard on our bodies, buts it’s equally as hard on our minds, and when you are prone to mental health problems or live with a mental illness already, specifically ones prone to intensify with hormone fluctuation, the need to receive the right healthcare is critical.

https://iapmd.org/ the international association for premenstrual disorders have a directory that can help you find doctors in your area that specialise in PMDD so do check them out.

Acceptance isn’t linear

March 19, 2021 — Leave a comment

Entitled with contradictory statement maybe? Surely if you accept something, that’s it? Accepted, done, move on. Well….. I disagree.

The reason being is, take grief for example, you might accept someone is no longer physically on earth for you to love, but find it hard to accept the feelings that come with that knowledge. It’s not over just because you’ve said aloud you accept it. You can acknowledge a situation, tell yourself you accept it, and then change your mind. It’s not back tracking, it’s reality. You may start to accept one thing only to be faced with another, making your acceptance of the first, harder again.

I use grief as a prime example, Miranda Heart comedienne and Myalgic Encephalomyelitis sufferer recently said ‘With chronic illness comes a daily grief’ and nothing has ever rung truer with me.

I accepted my diagnoses a long time ago, because I’ve lived with symptoms for so long that there was no alternative to accepting their presence in my life. True and absolute. However, everyday brings with it it’s own challenge, every new symptom overshadowing my acceptance of the old ones.

With pregnancy too, because I’ve accepted I’m a person that doesn’t enjoy pregnancy, doesn’t cope well and doesn’t feel well throughout, but that acceptance doesn’t stop my grief. It doesn’t stop me wishing things were different or wanting to trade my body. You can accept and acknowledge a situation without enjoying it or thriving within it, and the goal posts can move.

I know during pregnancy my only goal is to get myself and my baby to the end in one piece, but once my son is here, the goal posts will move again and it will be back to getting through the days with chronic illness, because there is no end to them. There’s no one and only goal. Life is interchangeable and acceptance shifts. People tell me right now, that it will be worth it when my baby is here, like I don’t know that already, and they tell me to hang in there like it’s possible to do anything else.

They may or may not know, I have been hanging in there everyday for the last 5 years and more. Of course I get good days, though they seem fewer the older I become, but I don’t all of a sudden become well because I’ve had a good day. I don’t get to walk around with the knowledge that there’s only so long until better days are coming, because my good days can be equivocal to someone else’s worst.

I feel I can hardly shout this from the rooftops on a daily basis because then the few friends who have stuck with me would likely also tire of my complaints, so I have no choice but to accept my situation. Somedays I do it with grace and positivity and sometimes I do it reluctantly and with frustration.

When it comes to health of any kind I don’t think we ever agree to the offer. We look for a cure, we look for sustainable treatments and ways to better our situation. Never fully assenting to the offer of a diagnosis.

It’s true you can’t fully understand someone’s situation until you’ve walked in their shoes, and that also means what is easier to accept for one person may be harder for another. We can’t ever know how we’ll deal with something until it happens to us. We can’t ever fully accept a situation until it’s been lived in, and nobody can be blamed for that. It can’t be expected of any of us to accept everything someone else experiences but we can choose to accept their version. To believe them.

One thing I have learned about acceptance is, it looks different for everyone, including myself, for some occasions it brings peace and others it makes me want to fight back harder.

It’s not linear. It’s not complete and absolute. But it can be a starting point.

Avulux Vs Migraine

March 5, 2021 — Leave a comment

Flashes in your peripheral vision that slowly etch their way into both eyes, overwhelming fatigue with nausea that fills your mouth and makes your stomach roll. Pain in the base of your skull, around your eyes, tingling in your face, maybe in other body parts too. Before you know it you are in bed with ice packs strapped across your eyes, the need to eradicate light from every source immediately is paramount.

Not again. Please not again. You took your meds. You’ve been taking preventive meds every day for years, onset medication like triptans may also be used, but sometimes leave you feeling worse, blood pressure sky rockets and the explosion in your head makes you contemplate heading to your nearest hospital. Are you having a stroke? There’s absolutely no way to continue your day, you can’t walk, you can’t see and the pain is making it hard to speak.

You know it’s a migraine you’ve had them for twenty years, but what if this time it’s not just a migraine? Why aren’t your pain killers working? Sleep is not forth coming. Sleeping through this kind of pain is impossible. Tomorrow you’ll call your doctor and ask for more meds and they’ll tell you there’s nothing more they can do.

Randomly you get offered to try some glasses that block out light known to trigger migraine. You roll your tired eyes and think it can’t be that easy. I’ve tried everything what are these glasses going to do? The skeptic in you isn’t sure about this, but the desperation to ease further attacks makes you relent.

This is my story and this is how I came to hear of avulux glasses.

Avulux reached out to me in January this year. They didn’t offer me free glasses instantly, they asked to meet with me online to find out my symptoms and if Avulux would be suitable for me personally. I explained that I think my migraine maybe related to hormonal changes because of the increase in frequency and severity during my pregnancy, but because all of my migraine attacks start with aura they were confident Avulux may be able to help.

After meeting with the Avulux team and learning a lot about the science behind the product I was intrigued and excited to try a pair for myself. Avulux lenses are like no other light blocking glasses on the market. If you’ve researched migraine treatment you will know you can pick up a pair of blue light blocking glasses from Amazon for around £25.

So what makes Avulux so special?

Avulux filters up to 97% of the most painful blue, amber, and red light that have been shown to incite migraine attacks and increase headache pain. Avulux actually let’s in soothing green light to ensure there’s a fair balance of light filtered vs passed through, thus it’s comfortable to wear them indoors or outdoors and they don’t cause further light sensitivity nor do they dark adapt one’s eyes. They don’t alter colours or vision and you can still see clearly wearing them. 

Avulux suggest that if you use the glasses at the first sign of migraine aura, or other migraine symptom onset, you get the best results. For those with more than 15 headache days per month, they suggest wearing them continuously as a preventative. And don’t just take their word for it, read here the experiences of Avulux users for yourself. Avulux Reviews

So, here begs the next question. Do they work for me?

I have suffered from migraine since aged thirteen, I am now thirty three, and over the years they have increased alarmingly in frequency and severity. I have been trying to manage migraine with preventative medicines for the last four years, accompanied by onset medication such as triptans and painkillers. Since becoming pregnant and having to drastically reduce and remove certain medications migraine has attacked me every 3-4 days and an attack usually lasts 2-3 days. This has been constant for the last twenty weeks. When my Avulux glasses arrived I was almost waiting for a migraine to strike, and like clockwork three days after their arrival it began.

I woke with a pounding in my head that accompanied visual disturbances and vomiting. As soon as I woke I was certain the day would be a total write off. My Avulux glasses went on at 8.30 am. By lunchtime I was still very nauseous, but the pain in my head had not increased at all almost unheard of during a migraine attack. Though I felt fragile all day, I was able to carry out activities that are usually forbidden during migraine, such as read a book and watch television, use my phone and communicate with my family.

I woke up the following morning feeling exactly the same. This isn’t unusual, as mentioned attacks usually last a minimum of 48 hours. Again I used my glasses upon waking, and again I was able to function, not feeling fantastic but not in the depths of despair with unimaginable pain either.

My husband was skeptical, maybe it was the placebo effect? But I am confident that had I not been wearing Avulux I would have been in the full throes of a severe attack. Avulux were very clear during discussion that their lenses are a migraine treatment and not a cure. They also advised some users suggest that wearing Avulux reduces symptoms enough for them to carry on their day. This tallies up with my experience. I didn’t feel cured, I didn’t feel amazing, but I also didn’t feel inexplicable pain. For me personally a reduction in severity is a monumental step in the right direction towards a better and more controlled life with migraine. The following week the same happened twice, I woke with head pain, eye pain, fragility and fatigue. This time I didn’t reach for pain medication instantly, I applied my glasses first. And low and behold it staved off the migraine pain again, and allowed me to celebrate upon finding out the gender of my baby that evening with my family.

For these mentioned reasons I highly recommend Avulux as a reliable and sustainable treatment for migraine that comes without side effect or risk to the user.

Further advice

If you suffer with chronic or ongoing migraine you will know that unfortunately a cure has yet to be found. If it’s a cure you are looking for, you won’t find it here, or in fact anywhere. What you will get from wearing Avulux is confidence that symptom severity will be reduced. They are a recognised migraine treatment in both the UK and Canada. They make no false claims and they are available to try completely free for sixty days. If that isn’t enough to tempt you to take the leap forward for a better life, you can relax in knowing you can pay for Avulux in payment plan instalments. The Avulux team have also kindly given me a code DIVAMUM to allow my followers to receive $25 USD off when purchasing you can purchase through my aff link here Divamum Money Off but ensure to also add the code at checkout

Avulux haven’t cured me of my illness but they have helped me find relief even on the really hard days.

A lot of noise

February 3, 2021 — 2 Comments

I make a lot of noise. I do. I talk (or rather write) honestly about my struggles in the hope it helps someone. Not just someone going through the same but maybe also someone trying to better understand a loved one. A lot of the time my honesty is met with kindness and I am grateful for that. Sometimes however it can deemed attention seeking and I wanted to address this a little.

I am seeking attention, but not for praise or pity, for recognition and understanding. Even some of my close friends and family still say things to me like ‘Well what’s wrong with you?’ And if you read my blogs you would probably already be of a better understanding. It takes a lot of energy to express our truest struggles, that’s why some people find therapy so triggering and this is why some people prefer not share because they don’t want to open up for fear of what lies beyond, maybe in the reaction of their peers. However this is also why advocates write and promote health issues. It’s not to say ‘hey look at me I’m thriving despite XYZ’ because most of us aren’t thriving the majority of the time. It’s not to say ‘hey feel sorry for me’ because your pity gains us nothing. It’s to say ‘Hey I have this….. if you haven’t heard of it here is a bit more information. It might help you better support someone who also has it, or it might prove useful to gaining a diagnosis, if you think you have it.’

It’s also to say ‘You’re not weak for feeling this way or thinking these thoughts, you’re not alone, and you’re not attention seeking for sharing.’

We all know their are people worse off than us we don’t want your sympathy to encompass us or your relationships with us. We aren’t asking you to change your behaviours to better suit us. We’re just asking for your support. So if you replaced the ‘attention’ in attention seeking with support you would see that all we’re really doing is support seeking, and trying to find allyship. We’re asking for your acknowledgment of our struggles and your belief.

What we’re also doing, is offering you our support. We’re standing in solidarity with you and saying we believe you when you tell us you are hurting. We’re opening ourselves up in promise to be more understanding of your struggles too.

Everyone can make noise, feel sorry for themselves and wish life was different. Everyone. It doesn’t make you weak to say so and it doesn’t make you an enabler to provide support to someone with a health condition. It makes you an ally. If we didn’t make any noise about our circumstances we would never be telling the full truth because to omit said struggles would be like saying we don’t have them, and we do. We all do! Whether they are similar in nature or totally different, each struggle is valid.

Telling someone who opens up about their struggle that it could be worse is not helpful, because they already know it could be worse, but for them it’s bad enough to mention. Telling someone to be positive is ok, but if they felt able to be positive they probably would be being so already. People don’t choose misery. If they did they wouldn’t be hoping to feel better in the first place they’d accept it and live with it.

So many things go unsaid and I’m tired of living in fear of reproach for how I manage my physical and mental health. There is no right way to manage, there are different ways that work differently for different people. But what works for one may not work for another it’s a lot of trial and error and countless days spent looking for new ways to live better. I’m not saying we should all make noise, but I am saying, if you choose to speak up in order to advocate for yourself or others you should be able to do so without fear of recrimination.

I was chatting to an online friend whilst recording a podcast about being our authentic selves. Feeling able to be honest about how we’re feeling is often part of the reckoning when wanting to live a more honest life. It will probably lose you some people along the way but if it does they aren’t your people. You are allowed to speak up, you are allowed to be honest about your feelings and if it makes other people uncomfortable you should be able to have those conversations without apologising for being honest. You are also perfectly entitled to be private, if being open doesn’t sit well with you, you don’t have to be, but you’re allowed to change your mind.

Being truthful doesn’t equal being negative. Speaking up doesn’t equal attention seeking. Putting your feelings out into the world doesn’t give any person the right to make you feel like shit. Make noise, stay quiet, fight for your rights or don’t, but whatever you decide, do it for you. Because you know yourself best, and you don’t have to suppress yourself in order to make someone else feel comfortable.

Pregnant and chronically ill.

January 11, 2021 — 5 Comments

Some of you might know my story already. I married my husband in January 2020, we did it just the two of us and it was amazing, but since our wedding, lockdown and covid-19 have presented challenges, as it has for everyone, I’m not naïve enough to believe I’m alone with that and I know there are people everywhere that have it a lot worse than I do.

For me though, my health deteriorated again and baby making was not on the cards for us during lockdown…. or so we thought.

We had a baby in 2016, and she’s a healthy, sassy four year old, but her start in life was hard, on her and on me.

My pregnancy was not an enjoyable experience, I didn’t feel well for a single day of it. I was debilitated by hormonal migraines and nausea throughout, and by 16 weeks I was on crutches diagnosed with Symphis Pubis Dysfunction- a condition that causes your pelvic ligaments to become stretchy and relaxed, making walking painful, the same condition had me in a wheelchair by 25 weeks completely disabled. Later I had preeclampsia, I was admitted to hospital and after several attempts a doctor finally managed to break my waters, my contractions were then hormonally induced. I often refer to labour as the easy part after 9 months of what felt like torture, but honestly, none of it was easy for me.

I was taking antidepressants throughout my pregnancy to manage my mental health, and as a result my daughter was born with Neo Natal Abstinence Syndrome.

A condition where babies are born withdrawing from drugs they’re exposed to in utero. I wasn’t warned about this, I was told the medication I was taking was safe for my baby. Withdrawal was something I assumed only illicit drug using mothers experienced, I was wrong.

She was in NICU for 10 days and then she screamed for 15 hours a day for almost 10 months. I’ve since spoken to people who were on similar medicines and they’ve had different experiences so it’s important to note, I’m not trying to scaremonger here. I believe in looking after your mental health, but there is no dressing up that it was a very traumatic time for us. I think the consensus is not to force mums to stop medication that keeps them well, and of course this makes a lot of sense, I just wish I had been armed with facts sooner. I was peri and postnatally depressed, suicidal at times, and it hurt. It massively effected my pregnancy and birth experience, my early bond with my daughter, and I don’t consider it a positive time to reminisce about.

Given the story so far you’ll have probably read/heard me freak the fuck out at the thought of baby no 2. Yet here we are, we got bored in lockdown. We ran out of things to do, we also ran out of condoms. (That was a joke btw don’t @me) Shaun always wanted baby number two, and for the last year Ciara has asked for a sibling, but the truth is I never wanted to be pregnant again.

But I am, kind of by accident, almost certainly by fate.

In truth, I’m petrified. I haven’t acted happy about it, because I’m not about being pregnant, not really. I know how ungrateful that must sound, and let me be clear, I want the baby, I love being a mother, it’s my life’s biggest achievement. What I don’t love are the effects pregnancy has on my health and well-being.

I battle with guilt daily about my dislike for pregnancy, because I know I’m lucky to be able to birth children.

In an ideal world I would have weaned off all of my medication before conception this time, but I have a chronic illness, one that takes over much of my life. I am constantly met with new symptoms, making it impossible to imagine a life without medical intervention. You know when people say ‘you’re pregnant not ill‘ – Well in my case I’m both. Most of the time giving things up in pregnancy is par for the course but what about when you’re giving up drugs that have kept you well for years.

So, I’m withdrawing from several different types of medication at the moment, but I’m still not medication free and I might not ever be. It’s hard on me mentally, to know I could go through the same thing twice with NAS and having a baby in NICU.

In my dreams this pregnancy would be totally different, I’d be fitter and healthier, mentally stronger.

Unfortunately it hasn’t worked out that way. I’m not going to miraculously become well whilst living with a chronic illness, (chronic = ongoing) if anything it worsens as the years progress. I haven’t gotten better, and I feel as awful as I did in my first pregnancy if not worse, because there’s more to worry about – a lot more.

Midwives have classed my pregnancy as ‘high risk’ for preeclampsia and SPD again (I’m already struggling with this just 14 weeks in), and for diabetes, and that’s without accounting for my illnesses and the cretin that is Coronavirus robbing us all of joy.

I feel like somedays, even before pregnancy, I was barely hanging on to my ability to cope as a functional human being, do the fundamentals like washing and cooking meals, and yet I’m putting my body through this again and it already feels hard.

So what happens if I can’t look after a new baby?

What if they cry for 15 hours a day again and I have a breakdown?

What if Shaun leaves me for our skinny neighbour with muscular thighs and perky tits?

What if, what if, what if…..

It’s a redundant question, because what if I got ran over by a bus tomorrow?

I could cite an endless lists of what ifs, but to get hung up on them means I also need to think of the flip side, that being, what if things work out ok?

A pandemic is a big deal to the most hardened of us. So being pregnant with several illnesses and a penchant for going fucking mental at the first sign of a hormone shift feels ominous, but we’re doing it.

Baby 2.0 is coming!!

Aside from being terrified, feeling even more like shit than usual and eating everything in site, I’m optimistic, because despite ALL of that, this time I really do know it’s all worth it in the end.

I’m being seen by the maternal mental health team this time, an option I wasn’t (but definitely should have been) offered in my first pregnancy. And I have a plan for my physical health issues and medicines, it’s not a great plan, but it’s a plan that involves a lot of listening to my body.

On top of that, I have a family who have my back. We’re a team and we’ll get through it because we have each other and because we are lucky, and this, however hard it feels, is a blessing.

I wanted to write this, because there still feels much stigma around not loving every second of pregnancy and motherhood.

There is never a time when I feel unlucky in motherhood. But sometimes I feel unlucky in health, and pregnancy is hard on my health, it’s hard in general, as is parenting, at times, for all of us. And it’s ok to say that out loud.

Our journeys are different and we are forever a divided world on how to parent, because there’s no rule book and we all have our own unique way.

I wish I could flip a switch and love every tender second of motherhood, but my truth is, I don’t love pregnancy and my experience of newborns brings with it traumatic memories.

That doesn’t mean I don’t love being a mother, it just means it’s not straightforward. I didn’t want to announce my pregnancy without having explained how I feel because I’m sure there are other expectant mothers who feel similar to me that don’t have the confidence to say so aloud.

There’s so much pressure to say over and over again how much you love your kids, how blessed you are, and if god forbid you forget to mention that, obviously you don’t deserve to have them.

What I actually think is, all you can do in these times is YOUR best. There will always be people that are struggling for different reasons in every aspect of life.

When it comes to your baby though, I really feel, like your best is good enough and what works for you, what keeps you well and healthy is as important as protecting that newborn head.

We will delight in the birth of our second child as we did our first and we will get through the tough times because this time, we know they really don’t last forever and the long nights whiz by with painfully short years.

Motherhood is hands down the hardest, most rewarding job and my only goal is to be good at it (and to get to the end of this pregnancy with both of us in one piece)

NB: If you’re struggling with maternal mental health please visit Maternal Mental Health Alliance for support.

For fibromyalgia resources it’s FMAUK

And for migraines it’s Migraine Trust

Migraine – not just a headache

December 28, 2020 — Leave a comment

I have started writing this so many times. It’s a so hard to put into words the debility of a migraine, without it sounding like a bad headache. So I thought long and hard about how I would explain migraines in this blog. I really wanted you to be able to feel what I’m trying to say, so here goes.

It may start off fleeting, a small dot in your peripheral vision, a barely noticeable shadow that casts a darkness over tired eyes. Maybe it’s more aggressive with flashing lights, and in some cases temporary loss of vision. You might feel a sickening in the pit of your stomach, coming from nowhere and catching you unawares, making your mouth water. You may be struck down by overwhelming fatigue that leaves your body feeling laden as though immersed in treacle. Or maybe your jaw starts to hurt from clenching. Maybe you have a pain deep set behind your eye that trails up over your skull and down your neck. Maybe your period is due, maybe it isn’t. Maybe you ate cheese, forgetting it’s a possible trigger, or maybe you didn’t.

You take yourself off to bed with the view to recover within hours. Painkillers line your bedside table and you take each one in turn at the first sign of the migraine. You lie down, dizzy and unable to sleep from the pain which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across your forehead not quite reaching the parts that are pained. A few hours pass and you wake up, rush to the loo to be sick, or sit up and be so dizzy you need to lay back down. You’re shaking, you feel like you’re hungover from 10 JD & Cokes accept even a hangover from 10 JD and cokes would be preferable to this shit show of pain you’re feeling. You are unable to distract yourself. The only thing to do is lie there some more, phone in sick, cancel any plans you made by forcing yourself to pick up your phone even though it hurts your eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel again, only to get one back saying ‘you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.’

The day passes in a blur, you cannot eat, you cannot sleep, you cannot watch TV or read, and you genuinely wonder how much more of this you can take. What if it never ends? What if today is the day you don’t recover from this pain and have to live with it indefinitely? You feel shaky, your skin is greasy, and your heart rate has sped up to a rapid crescendo. Anxiety causing the pain in your head to worsen again. That hangover feeling leaves you exhausted, thirsty and drained, so drained. Your stomach feels as though you’re sea sick and the thought of leaving the house is too much effort.

Your doctor advised preventative migraine treatment, so you take 4 pills every night of your life in hope that it will prevent the migraine occurring at all. You get a piercing that promises a quick fix and for a month or so your migraines reduce, but they are not gone. Oh no, they are never gone. When you’re tired, when your period is due, when you drink too much caffeine and also when you don’t drink enough. If you miss a dose of those sacred pills. Just about anything can be a trigger to be honest and you wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so disabling, so soul crushing, so unpredictable, and so much more, than just a headache.

You can also read this blog here on The Mighty Site

Therapy is not just for picking up broken pieces

December 22, 2020 — 5 Comments

A couple of weeks ago I had some news that really turned my world upside down a bit. I haven’t talked about it much because there is so much other stuff going on, but it’s been a struggle managing my emotions. I felt myself spiralling a bit, like I do every so often, usually when I’m due on. I decided to try and get ahead of this, so I called my GP who offered to refer me for talking therapies. I’ve had talk therapy before, many times actually, sometimes it’s helped other times not so much, but I’m never opposed to it, because I believe when you’re feeling mentally unwell you need to be open to trying things that might help. So I gratefully agreed to have a telephone appointment.

The lady I spoke to ran through a standard mental health questionnaire, then at the end she said I score mildly for depression and anxiety. I told her yes, it is mild at the moment, but I’m trying to intercept it before it gets moderate-severe. Her response was that I don’t meet the criteria at this stage for ongoing therapy. I’ve had this conversation before. I’ve written posts about it before too. I feel like this is the reason we are in the crisis we are in with mental health in this country, because we are waiting for people to be in their own full blown mental health crisis before offering them any support. I know that whilst the NHS is under so much pressure their resources might need to be elsewhere, but this isn’t a new thing; even before covid people were being turned away for not being depressed enough. Because I don’t want to die I’m not in crisis, because I’m not self harming or hurting anyone else I’m not in crisis. The sad thing is… I have wanted to die. I have self harmed and I have hurt people I love in the process of all of that. This time, this time I wanted to ask for help before I spiralled, before I lost control and needed to pick up the broken pieces of my life for the hundredth time.

Instead I got given some reading material and a thank you for my time.

This is not enough. Luckily for me. I am well aware of my triggers, I’m aware of my privilege and I have a great support network in my family. There is always the option to go private, but with my physical health being as rubbish as it is I usually need to top up care with massage or B12 injections, therapy is an added expense and when you’re down to the last penny you usually have to sacrifice one or the other. The trouble is with therapy is, it’s not just a one off cost. You have to pay this every week or every month sometimes forever and my fear is I’m one of those people that will need therapy forever. The thing with physical health is it affects our mental health too and so if I sacrifice the things that make me feel physically better, I’ll also be putting myself at a higher risk of feeling mentally worse. The struggle is real.

Life is hard right now for everyone and there will be people out there in worse situations than myself, probably not getting the help they need either. Learning to live through these times has been a colossal trek and we are all still hiking up cliffs hanging on for dear life. But mental health is not a new problem, it’s not a craze or a trend, it’s a continuous battle in the modern world, a battle that if not fought early and hard, can be and too often is, deadly. It’s a life threatening problem that we as a society have still not been able to tackle.

It’s great to post about mental health and raise awareness, open up and find solace in each other online but still this isn’t enough. Saying it’s ok to not be okay is one thing, telling people to reach out is another, neither are cures for a breakdown or social anxiety and sometimes they’re not even easy to do. I may know I’ll feel better if I reach out but doing it is a different matter all together.

So what can you do if you don’t meet the criteria for intervention but are still struggling? You can prioritise self care. You can access online support. You can reach out to family members or friends if you feel able. You can make time to read, write, do a course that makes you feel better about yourself. You can practice breathing and you can call any of the below numbers for professional support. If financially able you can look into finding private therapists that are able to support you long term. What you mustn’t do, is feel like the lack of free support available means you’re not worthy. You are. Whatever your next move is, please take this reminder that your struggles are valid. Your life still matters and you are going to make it.