One day at a time

Good morning, so here I am for another day. My mind is quiet peaceful this morning. This is allowing me to think about normal stuff. I still struggle to think past today. Its ridiculous how thinking further ahead than bedtime sends me into an anxious mess. When my mind is peaceful I laugh at the symptoms I have and think how ridiculous they are! They aren't ridiculous or stupid or irrational but the peaceful calm me struggles to understand how the mentally unwell me can not cope with the basics. 

Yes there are two "me's" the strong one who wants to figure out how I overcome the trauma reel, the depression, anxiety, chronic pain and reduced mobility. Then there is FND me who struggles to process anything without it becoming a drama, who can not plan past today as she is constantly thinking she will not be here tomorrow, (she prays most days that she wont wake up tomorrow). I really want to hug her and tell her it will all work out, shes the one holding all those traumatic memories, the regrets the feeling of never being good enough. I try every day to fix her a little but its a slow process shes just so broken.

Time to make some bears

mindfulness

Morning, something I have been thinking about over the last few days is how I used to respond when people said "try meditation, try breath work" my instant response would be "If I could clear my mind to do that stuff I wouldnt be so mentally unwell".

It is a stupid suggestion! Most of us with mental ill health have heads full of trauma reels, dark thoughts, self destruction and so much more! So how are we supposed to use mindfulness to calm our minds?

I can not speak for everyone who suffers mental ill health but for me as I have mentioned before the first hour of the day my mind is usually pretty calm. This is when I do my meditation and breath work. It took me forever to convince my brain that this was the time to do it. After all my mind is calm, I do not need to calm it now its when its manic I need it. WRONG!! By doing meditation, breath work and or some gentle exercise when my mind is calm it helps keep it that way throughout the day.

A good way to understand it for me was to relate it to physical health. If you have pain medication to ease that pain is usually taken, so the medication is to be taken 4 times a day for example. by taking it at the intervals prescribed you will keep on top of the pain and it will remain low or not there. How many of you only take the painkillers when the pain gets bad? I am guessing a lot of you I used to see it all the time. 

Ok so this mornings blog is a bit of a ramble, however it works, think about it and give it a go. 

Have a great day

Insecurities 

The thing with suppressed trauma is how it can convince you that you are not good enough.

I have lots of unresolved trauma from my childhood, things that happened that as separate events were quite insignificant, when they all collided after my injury they exploded into a world of self doubt and self loathing. I believed that I was never good enough as a child. Middle child syndrome is a real thing, at least it was in my world. When I look back at how I felt, who made me feel like I did and why I had those feelings some of them are justified. Others were the result of an over sensitive teenage mind. I'm not going to go into the life events that have contributed to my poor mental ill health today, I'm nowhere near ready to put all that shit out there yet. I will however say that carrying all that stuff over the years resulted in me never feeling like I was good enough! Feeling like I was totally unlovable and that I did not deserve to be happy.

My unresolved issues still till this day constantly tell me that I am insignificant, that I do not matter.

The difference today compared to all those days is that I am teaching myself that I am not insignificant, that I do matter and I do deserve to be loved for who I am. I do not need to change who I am to "fit in" with other people. I do not need to be a people pleaser at the detriment of my own happiness and I certainly NEVER need to apologise for being me!

It is still a work in progress and changing my mindset that has been built up over 50 years is taking time. I do believe I will get there though. On my positive, strong days I totally believe that. On my dark days I totally believe I have no place in this world and would be better off dead!

This is the reality of Mental ill health we need to talk about this stuff not be scared of it.

Trying to fix me

I have been told that one of the things you have to do in order to recover from Functional Neurological Disorder is to accept it. Apparently you have to accept that your Neurological system is working fine but has decided to present you with life crippling symptoms. 

I struggled to do this for so long, I have figured that it is because I have a Paramedic brain, my brain is programmed to fix things. So to me it is simple, all I have to do is tell my brain that there is nothing wrong with my nervous system and talk it out of the symptoms it gives me. 

I wish it worked like that, I wish I could convince my body of this, I am tired from trying. It is so much more complex then that. Although I have finally after almost 4 years managed to calm the "trauma wheel" to a manageable level my symptoms still persist. The reduced mobility is the worse I think, getting exhausted just walking up the stairs, my legs feeling like lead and refusing to work. The excruciating pain in my hands, which stops me making the bears. I want to get better, I want my life back, when I think about this being me for the rest of my life I am totally defeated. I refuse to live this way forever!

So why after nearly 4 years of being told "you can recover from this" am I still on waiting lists for the psychological input???? I'm done asking why? I'm done chasing, I'm done asking, when. If it was a physical illness there is no way I would of been left with no treatment. 

I just want me back!!!!!!!

The suicidal brain

We don't like to talk about it do we? Suicide, "the easy way out" "selfish", "they did not have to do this, I would of helped them" just a few things we here after someone completes suicide. So why do people get to a point in their lives where they feel they have no other option than to end their lives? Why do so many people believe there was no other option than to leave this world?

As a Paramedic I attended may people who had both completed suicide and made a failed attempt. One thing that I would here a lot from family or friends was "I don't understand, they have been so happy this last few days". So why did someone who seemed to be turning their lives around, finally fighting the demons then take the suicide route?

To understand this we need to understand what happens in the mind of someone who attempts or completes suicide.

According to the World Health organisation 726,000 people worldwide complete suicide, this figure does not include the hundreds of thousands of people that fail to complete suicide. 

An article by Psychology today reports that over 90% of people that survive a suicide attempt are relieved they did and with support do not attempt it again. 90%!!!! I here you, "so why did they do it in the first place?

Ok this is the best way I can explain the suicidal brain and why to many people complete or attempt to end their lives.

Emotions! emotions play a major part in all aspects of our lives. I would hazard a guess that most of you would say that "happiness" was your favourite emotion. That warm feeling we get from someone or something in our lives, the reason we have a smile on our faces. "Life is good"! 

So here goes.....

Most of us have at some point in our lives fallen for someone who at the time seemed like "the one" who however turned out not to be. Close your eyes and remember that feeling you had when you first met them. That instant attraction, the way they made you feel whenever you were together, how you couldn't wait to see them next. How they consumed your thoughts and your world. Friends, family may have told you that they didn't think they were right for you, its easy looking in from the outside, people in your circle would of seen any "red flags" but you being in this world of complete bliss did not hear any of then concerns they raised. The way they made you feel was all that mattered and nothing could change that. Then when it all came crashing down around you, you could see all those warning signs, the red flags and you hopefully learnt from this experience.

So lets use this scenario to understand the suicidal brain. There are many reasons people end up feeling that suicide is the only option they have to end their situation. I am going to use mine as its the one I know best.

Before my accident I had a brilliant life, doing a job I adored, a lovely home, holidays time with my family. Everything was great. Then in the space of a year all of that was taken away from me. I could barely function physically and mentally I was exhausted. So the overwhelming feeling that the only way I could get off of this ride was to end my life. nobody on a professional level was helping me, I couldn't help myself, I spent every day in excruciating pain with a trauma wheel running through my head on fast forward. The only way to stop it was to die!!!

The plan I have for my suicide is fool proof, if I do carry out this plan I will be successful, I wanted a plan that would work as the only thing worse than living in this world was be a failed attempt to leave it. This is where the "they seemed so happy" comment comes from. When you live in a world of darkness, fear, pain, debt, abuse, betrayal, hopelessness having a plan that will end it makes you happy! Sounds a bit fucked up but it does, it makes you happy because you know you are finally going to ger relief from the nightmare you are living. As with the person who is blissfully happy and does not hear the warning from those around them, the suicidal person does not here the thoughts of those around them. 

People that complete suicide are not "selfish" they are broken, broken to a point where they just could not take it anymore.

We need to get help for people with Mental ill health before they attempt suicide, statistics show that of those that survived at the point where they carried out their suicide attempt they had regret. 

Until the NHS realise that we need to invest more in helping people regain and sustain healthy Mental Health, people will continue to complete suicide. My suicidal thoughts are with me daily, thankfully for a few weeks now they have been tucked away. I live however with the fear that one day they will become so overwhelming that I will complete suicide, but for now I am working on fixing me, if this blog can help fix someone else then that's a few tiny steps forward in this dark world

Sad Saturday

I feel really sad today, my pain is beyond bearable, I am just really sad. 

I miss my mum more on days like today, before she died I would call her on a day like today and it was a given that just by chatting she would lift my mood. I miss her laugh, I miss the fact that she would always answer a video call with the phone icon and repeatedly say "where are you, I can't see you Vee Vee". Oh god I miss that laugh, I have her video with that laugh but it just isn't the same. I yearn for our conversations and her brutally honest opinions on everything.

When she got cancer and I went to care for her she would ask me to sit with her, "why"? I would ask, "you make me feel safe". Then she would laugh and say "ok, you can go now, you're freaking me out" as I sat and stared at her. 

She wasn't supposed to leave us yet, she should still be there in her chair, laughing. 

I will let myself be sad today, tomorrow is another day and for those of us that will still be here it is a blessing

Love you morer mumma, don't go out 

You look well

"You look well", this has become a comment that cuts really deep with me. Just 3 little words that I here on the rare occasions I am well enough to go out and do something.

"You look well" my response "thanks".

My response in my head:

Do I? Do I really look well, I have straightened my hair, maybe have a little make up on, so physically from the outside I probably look well. I don't fell "well", I feel "able" today I feel able to leave the house, pick up the grandchildren, take a short walk round the shop, get my nails done. I'm in pain, manageable pain today, my legs are heavy and tight, my back is having spasms, I feel like my energy tank has a leak and is emptying at a rate of Knotts. My brain is telling me I look a mess, it reminds me of every incident I attended between my home and here and how traumatic it was for the people involved, especially the ones I could not save. My mind is telling me "you should of saved them". My clothes feel rough on my skin, uncomfortable, I just want to get home and into my baggy PJ'S.

This is just one of the daily struggles of having a chronic invisible illness, people look at you and think "you look well".

I hate my illness, I hate that I can not get the treatment I need to get better and cope with it. I want to scream at people that say

"You look well"

Looking after yourself is not being selfish

I have spent my life doing what is best for others, putting other people first to the detriment of my own happiness. As my past trauma told me that I had to do certain things to make people like me, change who I was so they would like me. When you live in a world where you have NEVER felt good enough, where you always felt second best. Pleasing other people to make them like you becomes second nature and you get to a stage where you do not even realise you are doing it anymore. 

It wasn't until the accident and my world imploded that I realised most of those people, the ones I changed for, sacrificed for did not give a shit about me. None of them checked in on me, popped round or called to see if I was ok, no messages of "I am here if you need me" At first I let this eat me up, it fuelled my belief that I would simply never be good enough for anyone. The dark side of my brain loved it, telling me that it was true I was worthless, useless and did not deserve to be loved.

As I have moved along my journey to find myself and heal the trauma, I have realised that it was never me that was not good enough, I did not need to change to please others. The problem was with them! They were not and are not worthy of having me in their lives. I am no longer a people pleaser, I no longer change who I am to keep people in my life and the result is that my circle is very small. Those that stayed, those that have allowed me to disappear to heal, have allowed me to vent my concerns and fears, those are my people and I will always be grateful to have them in my life. 

We need to be calling people out when they use us as their emotional punching bags, the phrase "its ok, its what i am here for" is bollocks" What we should be saying is "I get you are having a bad day and lots of things have pissed you off, so why don't we talk about it"?

We need to be calling people out when they try to manipulate us by saying things like "why are you being nasty" when all we was doing was expressing your opinion on their actions.

We need to be able to say "I am not in a good space to help you through that today" without people responding with "you just do not care about me"

It is ok to get upset with those we love, it is ok to disagree with their actions or words, it is ok to take time to check our own state of mind and do some self healing. 

Seriously if those around you do not understand this then they are not your people, let them go, step away from them. 

Life is short, life is precious and we never know when it will end so surround yourself with those that enhance your being, not those who make it worse.

You are NOT being selfish when you put yourself first, you are being kind to the one person who's opinion and attitude to you matters. You are being true to yourself and that is the best way to be.

It does not make sense

One of the things I was told by the FND specialist at Addenbrookes who diagnosed me was "you have to accept you have FND". At the time I remember thinking ok that's easy enough, it is what you are diagnosing me with so I accept it. In reality it was really difficult to accept that I had a condition that I had no control over, that was triggered by a back injury and that no matter what I tried was not getting better. Research that I carried out talked about "disassociating" myself from the symptoms. This involves ignoring the symptoms when they occur rather than fixating on them. This is really difficult! an example being when my legs go completely numb and I can not move them. Convincing my brain not to focus on thoughts such as "how will I get to the bathroom" "how will I move myself" amongst other things is so hard, our brains are trained to focus on the problem at hand and try to fix it. Distraction through thought was the first thing I tried, lying there thinking about anything other than what was happening to my body, nope did not work as although I could divert for a few moments my thoughts would soon revert back to the symptoms. So I tried diverting my thoughts by carrying out tasks, which is where the crafting came in. I found that slowly I could extend the length of time I was "thinking" about the symptoms by concentrating on what I was making. Im still not sure if this resolves the symptoms quicker, and it still does not make sense to me that there is no pattern to my symptoms or specific triggers for them. I am literally having to re-train my brain and the way I think about things. It is just so difficult to do without professional support and some days I just do not want to try anymore. One day I hope it will all make sense but as with a lot of chronic illnesses it just doesn't.

My dysfunctional brain

Trying to explain to someone how my brain works is exhausting and I have figured that unless someone has a similar condition they just do not get it!

Prior to the injury I would just let shit go, I did not let the little things bother me and if I am honest if I could not change the big things I would pretty much let them go as well. So imagine my delight when my brain decided that everything, i mean everything was going to bother me. Its like having a "mini me" in my head that just will not let shit go!

On top of that the escalation time from a minor inconvenience to a full blown drama is around five minutes. No matter how much I try and tell "mini me" that "it really does not matter", "that it has happened and I can not change it" "mini me" will continue to escalate that shit and drive me into a state of heightened anxiety and rage, a rage that boils up from zero to sixty in ten seconds and explodes into me having a break down. When I talk about it I can see that it is not right and I should be able to control this. I have so much advise to give myself around why life happens and you have to just let it go to move on. However Its like I am two different people the rational one who wants to stop feeling like this and has all the coping mechanisms to stop it and "mini me" who wins every time. 

If it just went away, calmed after the outburst that would kind of be ok but it does not. It simmers inside me for hours. Once "mini me" has taken control she floods my mind with flashbacks, self doubt, suicidal thoughts and a terrifying lack of control. 

Eventually I will manage to calm, I think "mini me" gets exhausted from all her hard work. Then I get the feeling of uselessness, the pain worsens when it happens and I spend hours with the feelings of self loathing that I have for this illness and all its symptoms.

I hate FND, I hate PTSD, I hate depression and anxiety and I really struggle with having all these things in my mind.

It has taken over control of my body and broken it, will I ever get fixed? 

It is just to much

I have been struggling a lot lately, that's the thing with mental ill health it's a roller-coaster one minute you feel like you are finally getting on top of things and then bang! It drops like a brick, and all you can see is darkness.

When this happens I try and concentrate on making the bears, however for the first-time since this all started even the bears don't work. So I'm left in a world where I have no "distraction" no "coping mechanism" no health professionals to ask for help. I'm left with just me, and I have no more answers. I have no more options, my world is imploding at the moment. 

This weather makes my pain so much worse which does not help, I spent the day with my grandchildren yesterday and the time with them was so precious, though shrouded with pain and exhaustion.

I do not know what else I can do to end this horrendous roller-coaster that's my life. I just want to get off of it now, I just want it all to stop, I want to be better, I want to be me again

Time to go back

10 months, 10 whole months since you closed your eyes and left us. Some days it seems like yesterday others it seems like forever. 

On Monday I am coming home mum, even though you are not there anymore it will always be home. I guess it is going to be strange being there without you. I know you will be there as I feel you with me everyday, but it will not be the same I know it. I promise to carry out your wishes, seems like I am going to have to kick dad up the arse as he is letting himself go a bit.

It's strange to be going home without you mum, I miss you so much! I will be with Marky, so we can look after each other.

Love you mum xxxxx

Masking over the cracks

Finding a way to distract myself from the trauma reel was literally life saving. Each and every bear that I make has given me more life! Sounds dramatic but it is so true. Each beautiful bear, every stitch has kept me from ending my life. I mean it sounds amazing doesn't it? "Lady makes bears to heal her mental ill health" "women says sewing is saving her life" "Crystal Cuddles bears save my life and enhance the lives of those that buy them" So awesome, I should run classes on how distraction saves lives.

The truth is, when you strip it back, all it does is paper over the cracks. The trauma reel is still there and it is building, on the days when the distraction does not work that trauma wheel hits like a hurricane, bigger and more intense every time. 

The problem is I can not fix it on my own, I can mask it, I can act like I am doing great! The reality is I am consumed by traumatic flashbacks, suicidal thoughts and physical symptoms that without treatment will one day win!

Three years, almost four I have been waiting for help from the Mental Health team. I was promised that I would be allocated a support worker on the 6th January 2025, which was my late mums birthday. Nothing! I have heard nothing from the community team, I have called them, I have asked why I did not receive the calls I was supposed to receive on discharge from the crisis team. I have asked for a medication review, I have asked why I have not heard from the support worker I was supposed to have been allocated. The response, "I will get a manager to call you back" I have had no call backs, nothing no contact from them at all. Why is this acceptable? How are they allowed to treat people like this? So many people are taking their lives because they are not getting the support they need to get better. If it was a physical illness I would of been treated at the start, I would be recovered by now, my symptoms would be under control or gone. 

The system is worse than inadequate and I see on the news that they have been taken out of special measures?????

Really!!!!! 

How long can I keep papering over the cracks with my distraction technics? another day? week? month?

I truly do not know, I do know that my mindset today is to keep trying and I am taking it one day at a time.

This is what makes Crystal Cuddles bears so special to me, every bear that sits in someones home, cuddles a child to bed at night, each one has papered over another crack, paper tears, paper rips eventually and everything falls apart!

Traveling home 

I have always hated flying, even though I have dine that 10 hour flight to mum and dad's more times than I can remember. My brother pointed out that it is only the second time we have ever flown together, the first was a holiday to Ibiza just after we were adopted. I like spending time with my brother, he feels me with memories of a childhood that was good.

So we booked into My lounge at the airport something I haven't done before but found out that it has a smoking terrace! All you can eat food and drink, including alcohol was well worth the £30.

The flight is rarely full flying to Tampa, so we got 3 seats to ourselves, which I love as sitting that close to someone, even someone I know freaks me out! I like my space. Watched a couple of films and before we knew it we were here. 

Arriving at the area where dad met us was hard, although while mum was unwell he met me on his own a few times it was OK because I knew she was at home. Going into the house the "silence" was haunting, every inch of me was screaming inside to hear her laugh, her voice see her sat in her chair. All night I was on alert for dad to call me through and say mum needed me.

It is haunting being here without her, doesn't seem real. I want to go I  her room and curl up next to her in bed. I want to have the conversation about why it is ok to take painkillers and anti-inflammatory meds together. I want to here her say "don't go outside, sit with me you make me feel safe". I knew this trip would be hard, but I never knew it would be this hard. 

I am close to you here

It isn't about the bricks and morter, it's about the people who are there. Tampa is a long way from where you grew up, where I have some of my best memories with you but being here feels like home. I feel your presence so much closer here, I here your laugh and the funny things you used to say. I also here you calling me through the night, the way you called me when you were in pain or just wanted me to sit with you. I feel closest to you in your closet, your smell is overwhelming in there, your favourite clothes and ugg's still where they belong. 

It is hard being here without you but it feels like home. 

Family

Family is something that has always played a massive part in my life, as a child our world revolved around family. With Nan and grandad being at the centre of us all. A lot of memories have been pushed away by my trauma reel, replaced with visions of dead children and mangled bodies. Some stay rooted in my memory and I cherish these. Every weekend and holiday would be spent at nan and grandads house. All the aunts, uncles and cousins together, laughing playing. Camping holidays in Great Yarmouth all our tents in a row there were a lot of us. 

Family dynamics change as we grow, some move away some stop talking and some leave this earth for a better place. My brother and I were always close as kids and although we've had our moments we have always remained there for each other. Family now is a small tight nit group, my children, grandchildren, dad. My brother and a few cousins I talk to occasionally. Spending this week with my brother hearing his memories of things we done as kids that I no longer remember. It's been healing being with him especially here where we can feel mums presence stronger than at home. 

Family are the people we chose to have around us, we do not have to have people who are blood in our lives if they do not make it better. It's OK to leave them behind and move on with the ones we want around. Dad is sad and lonely, it's painful to watch but I will as I promised my mum continue to take care of him and make sure he is looked after. 

The Silence is defining 

From the moment I walked through the door, the first thing that hit me was the silence. Thus house was never silent when you were here, your laugh, the loudness of your voice. The silence here now is defining.

Your empty chair, no kettle boiling for your tea, no conversation about why you can only eat certain meals on certain days. I see you everywhere, I see your frail body dancing in your chair, I see you lying in bed begging me to take your pain away, lying unresponsive on the bathroom floor. I see you on the funeral directors trolley.... I see you but the silence is defining.

Everything of yours is still here, exactly where you left it, I want you back! I want you to ask me for the millionth time if it's OK to take your meds together, I want to hear you scream at Trump on the Tele to fuck off!!!! I want to hold your hand and rub your legs all night.

Mum the silence is defining!!!!!!!