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. #4

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

Kids

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

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

Hormones

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

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

Breakthroughs

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

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

Confessions of a chronically ill mum #3

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

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

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

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

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

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

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

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

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

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

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

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

I have to take action, for my family.

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

All I want for Christmas, is you.

What a year. I can’t believe that just six months ago I felt as though my world had imploded without any real warning. I woke up one day and didn’t feel like me anymore. I was afraid for my sanity, for my mobility, for my family and our future.
I couldn’t see past six hours without having a panic attack let alone six months.
I led in my bed, day in day out for 7 months, unable to walk.
As my son’s due date approached my mental health declined.
I felt consumed by all consuming, claustrophobic, fear. Wracked with perinatal anxiety.
I was broken.
I guess that’s why they call it a breakdown.
But here we are now, a family of four, surviving interminable routine and carnage, poor health and therapy, work and parenthood simultaneously.
Loving each other through it all.
It’s not been easy, it’s been hard getting here, ridiculously fucking hard in fact, but it has paid dividends to keep going.

I’ve got everything I need this Christmas. Genuinely. I feel so content with my family. When I say this I mean content as in they are enough, not content as in getting loads of sleep or life being perfect, unfortunately! Ha! I know how blessed I am, I’ve always known it, but I really feel it this year. After everything we’ve been through I have a desire to keep them close and let them know how much I love them. The only thing I want for the big day is more of that contentment (as well as good health & freedom for all, world peace too, but I’ll refrain from getting too ambitious.)

I am not the same old me I was last Christmas. Granted, I’m still a stressy, messy, bitch with a foul mouth who is always exhausted…. but I am also different. I’m softer round the edges. More vulnerable I guess, if that’s possible, but stronger too. I believe that what doesn’t kill us can leave us with a lot of unhealthy coping mechanisms, and I by no means, have ditched all mine. I haven’t turned into a preacher or someone who promotes their new lifestyle as some big epiphany, desperate for people to follow. But I am interested in change, in finding fun and contentment in new places. That makes me further away from those unhealthy coping mechanisms than I once was and I’m proud of that. I suppose what I’m trying to say is, I’m more open to learning better ways to survive and enjoy the mundane in the everyday.

I’m less inclined to sweat the small stuff whilst simultaneously being more interested in the big stuff.
My tolerance for a lot of things is greater, but less for small talk. I’ve always struggled with chatting aimlessly about the weather and the like, I’m too nosy, too inquisitive, I want to meet people and know them, not skirt around edges with hollow pleasantries. Similarly I’d rather be quizzed on my life than have it glossed over, skipped or ignored. I’m over hanging on to dead end relationships and chasing things that don’t bring me joy. Whether that be friendships that are more effort than fulfilment, or doing things I don’t enjoy anymore, for example forcing myself to be somewhere I don’t want to be. This year I have no desire for big boozy nights feigning Christmas cheer. I mean obviously the pandemic has some impact on those kinda outings, but I honestly think even without the plague, I’d still just want to be snuggled up close with my nearest and dearest.

Transitioning from one child to two has been a lot. I’m already anxious about how I’m going to cope with a baby that hates sleep whilst I’m trying to eat my turkey dinner. However, I’m ok with those kind of anxieties, they’re normal, they make me feel normal, whatever ‘normal’ is.
The biggest change of all for us this year is of course the fact we have an extra person round the tree to love. And love him we do. ❤️🎄

Subtle break-throughs

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

31 Weeks of growing you.

I’m tired. Tired of explaining why things are so hard. Tired of feeling stuck on a loop. Tired of the unknown. Tired of my body failing us. Tired of pain. I’m just so fucking tired.

I’m irritable, I’m fed up of people saying stupid shit to me, shit they don’t of course even know, is stupid – because how can anyone be expected to know what the right thing to say is, when I don’t even know? I’m just tired of all of it. I’m tired of feeling like I have to fight to have questions answered. I’m tired of having my situation dismissed or compared to that of so many others. I’m tired of feeling like I’m broken.

I have maintained the pretence that I’m not depressed throughout this pregnancy, because I don’t want to take more medication, it’s the first thing anyone says when I complain of low mood. Do you need to go back on your antidepressants? – and I feel like saying, please fuck off.

Because I know what depression feels like, and whilst I do feel very low many days, I also have a list of reasons as long as my arm as to why that is and a pill, unless it’s one that reignites my ability to walk, or makes me promises of a healthy baby isn’t going to change that at the moment.

So far I still feel like I have some grip on my mood and reality. However low I feel, I don’t feel like I’m fully depressed yet, but maybe I am and I’m in denial, who knows. I have gotten this far though and I can see it through until you’re born. We will then reassess my mental capacity, once we have a better understanding of my physical abilities.

I also feel like I’m becoming a social outcast – I can maintain a level of strength and resilience as long as I don’t have to talk to anyone. When I speak to people I feel like I either have to explain all the whys and what ifs or I have to appear strong and excited, whilst really feeling neither.

Feeling like I can’t hide myself wincing in pain, like I can’t hide the fact that I am in uncontrollable pain, every single day. Even before you existed I had to navigate a social life around pain and bad days, now I’m starting to feel as though I am incapable of a social life at all, where are the good days? Good hours pass by too quickly only to be met by flare ups of more uncontrollable pain. Most of my friends are amazing, they want to help and include me, they care, they check in, but I still feel like I am bringing the vibe down at every conversation. Like I’m just that person that people would rather avoid. I know I’m probably overthinking it, as you’ll learn, I do this a lot. It’s a work in progress.

We haven’t got long left – so it is exciting in lots of ways, but fear overrides. I don’t know what to expect this time despite having done this before. When I was pregnant with your sister the excitement was more pronounced because the outcome was completely unknown. This time the worry overtakes the excitement because we know how bad it can get. A pessimistic view I know, but in my head it’s also a realistic one. It’s a self preservation tactic, if I expect the worst I’ll be happy when better happens.

I’ve learned some things about you recently that do make me smile. Things like you hate me lying on my right side even though it’s the one I find most comfortable. You kick and kick and kick until I turn back. You don’t like loud noises. Your sister dropped a dumbbell the other day and you jumped with such force I thought you would jump right out of my body. You’re not bothered about baths even though everyone says babies go crazy in the water, neither you or your sister did. You protest after I indulge in too much sugar and you push back now when any one of us prod my bump.

I nearly didn’t write this, this week. It’s maternal mental health awareness week and my feeds are full of recovery stories, whilst I don’t feel like we are any closer to recovery. I know I will recover mentally, because I’ve been in much darker places than this before, but will I ever recover physically? Trauma, whether to the body or the mind comes with very real physical implications that filter into the everyday.

Mourning your old life is a daily battle when it comes to chronic illness and it’s why I find words of optimism so hollow, however well intended.

Still we move through the days, bringing us closer to you, and we hope that one day in the not so distant future these down days will be memories easily forgotten and better ones will replace them.

You could be here in a matter of weeks and I know I have to be strong for you, so I’ll keep fighting.

Baby Cullen number 2. Can’t wait to meet you. ❤️

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

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

Acceptance isn’t linear

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.

Unhappy New Year

So I think it’s safe to assume New Years Eve is cancelled this year, at least cancelled as we know it. Unpopular opinion maybe, but I’m so glad. I don’t get excited about getting dolled up after a week of eating more cheese than all of the mice in the country combined. The thought of squeezing myself into an LSD (little sequin dress) actually gives me nightmares. I also haven’t drank any alcohol since August so the a hangover that was sure to accompany me with celebrations will now stay firmly in my past, and maybe somewhere in my future but not in 2020.

Another reason I’m glad is I just don’t have the stamina for long drinking sessions these days. Alcohol triggers migraines, dancing for long periods exacerbates pain and booze also has a tendency to induce hangxiety, anxiety brought on and influenced by the onset of a hangover. I hasten to add, I’m also one of those people that needs a drink on a night out, otherwise I’m just happier in my pjs, so that’s where you’ll find me on this night in.

Kissing and hugging at midnight is not allowed with social distancing measures in place and so we probably won’t do much of that either. Maybe a mulled wine and more cheese to celebrate the beginning of another undoubtedly difficult year. On New Year 2019 I was 17 days away from getting married. I was eager and keen to start the new year off with a bang but this year I don’t think I’m alone in saying, I’ll be glad to see the back of it.

I’m not one of those people that moan about everyone’s New year new me posts, because I think if setting yourself new year goals helps you reach them, then just do you. It’s nobody’s right to shit on your parade. For me personally, I find I usually set myself up to fail so that’s why I’ve kind of done away with resolutions, but I’m definitely not opposed to them. I’ve recently gone from being someone with a chronic illness to someone with a chronic illness who is clinically vulnerable to covid, so I feel like the main resolution for me needs to be to look after my health better, again let’s not apply too much pressure, somedays getting out of bed is hard enough.

It’s a weird, weird time. Phrases like ‘when this is all over’ and ‘unprecedented times’ have become so ingrained in societal vocabulary I’m struggling to not grit my teeth at the sound of them to be honest.

I wanted to include some positives in this post because there have been a few for us as a family, but I kind of got berated for talking about being happy recently, as though I was boasting and aside from the initial feeling of reprimand, I get it. For some, maybe even most, this will have been the worst year of their entire lives and I by no means think it’s been a good one, I’m just trying hard to hang on to what I’m grateful for, it’s helping me cope amidst the chaos to be honest.

I’m thankful that I got to get married. I’m thankful I got to see my little girl start school, and I’m thankful to have people to love and to have people that love me.

But – I also want to say that if all you’ve done this year is survive, if all you’ve done is put one foot in front of the other, if you’ve struggled, if you’ve broken down, however you’ve coped. I’m glad you’re still here. I hope in 2021 we can all be less judgy. We don’t know people’s individual circumstances, so before posting about people not social distancing make sure you know for a fact those people aren’t bubbled up. Before you berate someone for not wearing a mask, make sure you know they aren’t exempt for medical reasons. I’m not saying their aren’t dickheads in the world blatantly flouncing rules making things harder for all of us trying to do the right thing, of course there are, but there are sometimes just people, using methods of survival that we have absolutely no idea about.

I, like everyone else want people to follow the rules to ensure this shit show is over quickly, but I don’t believe warring with each other is the way to get there. We can blame each other until we’re blue in the face but it won’t make an unhappy year any happier. I’m trying very hard to ditch the blame next year and accept some of the things I can’t change, and learning when to challenge and when to mind my own business.

Whatever your New Year looks like, if you have a vision board bursting with ideas or you’re just winging it, I hope that 2021 is better for everyone everywhere. We all deserve that.

This blog can also be read here: House21

Therapy is not just for picking up broken pieces

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.

To the you that feels too much.

Some days if not many, I feel like life is too much for me.

Too problematic

Too demanding

Too stressful

Too hard

Too expensive 

Too ominous

So I had a think about how I can break it down, because in all honesty I am all too often feeling as though I am one meltdown away from a psychotic break, and that isn’t a healthy way to live.

That’s when I realised problems are unavoidable, but I have the power to stop reacting to them and start tackling them with a clearer head. 

Most of the demands I speak of, I put upon myself. I am not able to meet the unrealistic expectations of my own making. However I am able to lower my expectation all together and treat myself with more kindness. Celebrate the small successes and work a little harder to focus on a solution based outlook.

Stress is part of life, but it doesn’t have to be the soul dictator of mine. The only reason it sinks it’s claws deep into my psyche is because I feed it with my adrenaline fuelled responses. I am highly sensitive and I am emotive but I don’t have to let my overriding emotion be stress.

Life is hard. It can be. It is. Though treating myself with disscontempt seems to come easy. Why is that? What can I do to change how I view situations? Could I perhaps allow myself more time to process difficulties? I think considering the amount of time I spend feeling like I’m climbing Ben Nevis it’s possible there’s room for improvement on my processing techniques.

Expenditure is essential to the cost of living, but it doesn’t have to be essential to my happiness. Material things are not that important to me so why do I always feel like I am missing out when I can’t afford stuff? Maybe because I spend too long comparing myself to my peers instead of accepting like our thoughts, opinions and lifestyles, our budgets are different.

I don’t believe a positive outlook will automatically grant you a positive life. What I have learned over time is the people I have come across with bigger problems than my own, people facing harder challenges and worse health, all seem to be more optimistic than I am. So maybe, I’ll try and count my blessings more often and throw away the curse that is negativity. I gain nothing from it and it gains everything from me.

My whole life I have felt as though I am too much for some people. It has taken me 30 (and then some) years to accept, they are just not my people. I’ve been battling with the ‘too’ instead of accepting just being me. It’ll come as no surprise to my family and friends that I feel this way because I’ve felt for a long time like I’ve been told I’m….

Too loud 

Too dramatic 

Too sensitive 

Too outspoken 

Too fiery

Too wild 

Too intense 

Too blunt 

If I had to describe myself now I would still use a few of the above words, but I would drop the too and I’d try and rephrase, because nobody has the right to tell me I am ‘too’ anything.

Yes as I mentioned, I am highly sensitive, but that makes way for empathy, for compassion. I care, not too much, there is no too much. I am caring, and that is something the world needs more of. It’s ok to care. In fact it’s good, until it isn’t, and you care too much about what other people think. I don’t want to do that anymore. 

Yes I am fiery, but only when it comes to things I believe in, I am passionate and I am driven by things that excite me. They are not the same things that excited me 10 years ago. Now I am excited by books, and words, and art. I’m excited by flavours and food and Sundays in bed. Safely replacing 10 jägers and a scrap outside the kebab shop. I’m excited AF when my daughter comes home with a bronze star or shares her sweets with her little best mate.

I am blunt, because I can’t fake anything. It’s funny really that I’ve been coined a ‘drama queen’ because my acting skills are fucking awful. My face will say everything my mouth forgets. If anything, I might be ‘too’ honest, but only because I genuinely believe honesty is always the best policy, and my sensitivity, believe it or not actually makes me quite a good judge of character. I don’t have the time, and I DEFINITELY ain’t got the energy to pretend. 

I WAS wild, now I am about as far from wild as a candle flickering into winter giving off vague scents of unwashed hair and 2 day old pyjamas. I am the opposite of wild, providing the opposite is not chilled. No, I’m not chilled, because I worry. I worry because I care. I want to be better. I want people to see me for the better person I am because I deserve that. Are you still with me?

I am still intense, because once I start speaking I really spill my guts. My opinions are emotive, and I have no façade. I do not hide myself behind pretence. I am intensely vulnerable and I am open. 

This can be a blessing and a curse. I overshare, but I also over love. I know if I was advising a friend on these qualities I would tell them both are ok.  

I am a complex mass of physical pain and panic. Of memories I’d rather forget and a future I’m desperate to control. To panic is to care. To be aware of your faults isn’t heroic or admirable, not really, but owning them and trying to fine tune them takes effort. And effort itself is admirable. 

I have had struggles, but they are not worse or more severe than those of others, they are just mine, they are part of me. They shape me, and I have no doubt. Not one speck of doubt, that I am a better person because of them. 

I am not too much. 

I’m just me.

You can also read this blog here at House 21

When losers win.

I have always been the girl, who never does anything extraordinary. Never got nominated for anything in school. Never got a part in the school play even though drama is my forte, because I didn’t put myself forward. I didn’t raise my hand to answer questions even though I knew the answer. I didn’t stay for after school clubs in my favourite subjects because I was more interested in smoking weed and playing spin the bottle (that’s a euphemism for whatever the fuck I liked) When I didn’t know the answers I didn’t seek to learn them. I didn’t like rules and I didn’t get the right kind of attention, any attention I did get was for the wrong reasons. My attitude took a long time to change and I’m still learning from the bad decisions I’ve made, and I’ve made plenty.

When my first stint at secondary school didn’t work out and I moved on to the next one I didn’t get praise for good work, I got chastised for bad work.

When I got my one and only A in GSCE I didn’t get told well done. I got told I could of done better in other subjects, if I’d have only worked harder.

When I went to work and had time off sick because my mental health can’t always be relied upon to remain ‘normal’ enough for me to function at full capacity all of the time, I got told I would never excel in my career if I couldn’t show up. I got told to suck it up and do better.

When I got diagnosed with a physical condition I had to take a lesser paid and much lesser privileged job, because I wasn’t deemed reliable enough to do important work. Suffice to say I left that job.

So when I won this award today, it wasn’t a victory because I was awarded winner status. It wasn’t a cash prize or a holiday to the Maldives. It was just a certificate, but it was a certificate rewarding my effort.

It was a victory because I won it doing what I love (writing) and it’s a potential doorway to another realm, one where hope exists and efforts are recognised. One where I’m good enough. It was a small award for a reasonably well read blog, but one day it might be a big award for a bestselling book (never say never) and even if it’s not, it doesn’t matter, because it’s given me the confidence boost needed to pursue a passion. It was a reminder that you can do whatever you want, we have the power to change our futures if we’re willing to give things a try.

Take a chance on yourself, it might not pay off, but it’s a lovely way to learn more about where your strengths are. We can’t all be good at everything but it helps if we like what we are good at.

So my apologies for milking this day to high heaven, but for the first time in my life I feel like a winner. 🥳

Save me

I started writing this last week and it’s taken me ages to finish because I have so much to say but also it could probably be more condensed. Bear with….

To anyone feeling like they’re making a mess of their life and unsure which way is up. I have some advice, it may not be the best but it comes from a place of empathy and sadly experience.

Have you ever heard the expression

‘Some people can’t be saved’

Whilst thinking about this I came to the realisation that they can, but they can only really ever save themselves.

I always say that my daughter saved me. Saved me from a depression so deep rooted, so old, it was painted shut, that it’s presence under the surface of my life was always there. If I’m being wholly honest it’s still there sometimes, but it’s not painted shut anymore, it’s not glossed over like a sash window that no longer opens. It breathes. I talk about it, honestly, and the window opens a little more each time.

Shaun helped save me too, save me from another bad decision or a kick off I couldn’t take back. But in the end it was me that picked up the broken pieces and got them ready for gluing back together.

I believe you have to hit rock bottom in order to resurface your new self. Half hearted attempts don’t work. YOU have to work for it. You have to meet your worst case scenario and move up from there, you have to feel like you have no other way to go, and I’ve been there.

I’ve lost friends, loads of them. I’ve lost a job or two inadvertently, because I couldn’t commit. But most of all I’ve felt like I had nothing left to fight for, all the anger and fear I had used previously to power me through another drama was gone. There was no risk of people I loved giving up on me because they already had.

There was no risk of being called names and gossiped about because the worst things had already been said. I had accepted I wasn’t popular because of my behaviour and so came the time I wanted to prove them all wrong. You have to want saving. You have to want to save yourself.

It’s not easy to rebuild your life when you’ve spent so long bulldozing through your happiness. When you’ve been so insecure you’ve picked apart everyone who provided reassurance. I found substance abuse is usually something that fits comfortably along side being depressed, that false sense of ‘everything will be alright tomorrow, after just one more hit’ it won’t. In fact, it’ll probably look much, much worse and you won’t remember what it is you did or said. You won’t remember who you hurt & if you do remember you’ll justify it by convincing yourself they deserved it. They may well have deserved it, but it’s YOUR mental health that will suffer because of your actions, more so than anyone else’s. It’s you that will have to pick up the pieces of your broken life and convince the auctioneer they’re worth something. You better polish them up good, so they’re shining brightly for the highest bidder because if you let them go for less than their value, they’ll be smashed to smithereens again in no time.

I don’t qualify as a mental health expert and I always feel like I’m being really patronising when I try and give advice because I remember so vividly how fucking infuriating it was when all these lovely people with lovely lives tried to help me.

In the end it was the tough love that really did the trick. It was the realisation that I was losing people I loved from my life because I didn’t know how to behave. Some relationships are still beyond repair and that’s something you have to live with when you make mistakes. Now I won’t pretend that a reputation can be erased or easily saved. It my experience, it cant. There are some people who genuinely want to see you fail and some people you might hurt too deeply to expect their forgiveness so if you’re after a quick fix to sort your life out, you won’t find it in redemption. Redemption is life long. Recovery is life long. Looking after your mental health is a commitment you have to make more eternally than any other vow. You have to pick yourself up from the gutter and swallow any pride you ever possessed. Pride is useless it doesn’t salvage anything. It wont protect you, and it definitely can’t fix you. Swallow it, even if it chokes you. Admit defeat even when you feel you were coerced into behaving like a total cunt, just admit that you fucked up. Say sorry, mean it and move on because waiting for an apology from someone who hurt you can easily end up with a life wasted on bitterness and the hope of revenge. Tell the truth even when it’s painful, because people need all the facts before they hand out forgiveness like sweets on Halloween.

So if you’re reading this and wondering if you can be saved. The answer is you CAN but the only person who can save you is you, and it’ll be so worth it.

How’s this below pic for a comparison and a bit of Monday motivation? 9 years later and with a few less bad habits life looks better, but I’m under no illusions that I’m still digging myself up from the hole I dug myself into and probably always will be. The difference is now I want to get out!

The truth behind living life to it’s fullest – By Sandra Skelton.

I am a huge believer in the idea that you only get one chance at life and that it is not a dress rehearsal. To ignore that will only bring you regret of a life wasted. It took me a very long time to learn the truth behind those statements and with that knowledge I share my journey with you and the reason why I love my life today!

The last year of my life has been a difficult one in so many ways. Waking up and not knowing where you are or how you got there puts a totally new prospective on your life. Just over six months ago I fell and fractured my skull which led to a bleed on my brain. I now live every day grateful that I am still here, I so very nearly wasn’t. That however, brings many thoughts and feelings to the forefront of my mind the major one being my life as a parent. Those who know me really well will know I wasn’t always a great mum. I am however blessed with the knowledge that my two girls probably won’t agree with this statement! My eldest daughter suffered the most (now your Diva mum) and grew up with 666 tattooed on the back of her neck. It took me far too long to realise the importance of good parenting and because of that my girls suffered, but I am blessed with the knowledge that it is never too late to make amends.

It’s ok to tell it how it is and share it with the world. My girls have proven to me time and time again that it makes you a better parent to speak out about your struggles and always try to find the positivity in every situation that life throws at you. There is nothing better than being a mother or grandmother but you don’t have to have gained an A star in either, in order to be loved!! We live and we learn, just keep going, you will get there.

Believe me! I did and I was crap!!!

Diva mum’s rule.. be one, love one and learn from one. It is what life is all about 😘

Sandra Skelton – AKA Divanan

Mindfulness

As a rule I’m not very good at mindfulness. I don’t practise it anywhere near as often as I should. I know it’s proven to work for millions of people and I am trying to warm to it, but I’ve always been a bit skeptical assuming it borders on hippyish and that’s just not me.

However I realise now I’m wrong and actually it can be as simple as getting outside for ten minutes a day and taking stock.

Today I sat by the river working on my novel and applying for yet more jobs. Feeling absolutely exhausted with corporate bollocks and rejection. I’ve been attending interviews like it’s my full time job and I’m starting to take the knock backs personally.

If you know me, you’ll know I take everything to heart and have a real complex around rejection. I decided instead to try and be rational. Give myself some time to take in the beauty of today. I know it sounds über cheesy and it’s not what you think. I don’t chant mantras or meditate (not that there’s anything wrong with those things, it’s just not very me) instead I just sat watching the river, listening to the running water of the weir and gave myself a bit of a pep talk. I always try and be thankful for the big and small things in my life. Like I have a roof over my head, a beautiful family, we don’t live on the bread line (even if we are always skint) and it was important for me to remind myself of these things today. I am a professional, I will find a job that suits me soon, it’s just taking longer than I anticipated but that’s ok.

Mindfulness is about being present, focusing on your surroundings and calmly accepting your feelings. So that’s what I did and I felt all the better for it! I was only sat there an hour, it gave me just enough time to write a synopsis and edit my copy to 3000 words. It was also enough time to feel like I’d had a break, got outdoors, took in the fresh air and got a bit of ‘me’ time in. The sunshine helps and maybe I wouldn’t of made the effort to be mindful if I’d been stuck indoors, but I plan to, going forward to get in a few minutes of mindfulness everyday.