An little open letter to 16 year old me

Dearest Me,

You are now freshly turned sixteen years-old and right now, you are exhausted. You are overwhelmed. You are frightened. And looking back it is so easy and visible to understand why.

Sleep is a rarity, food has become the one thing you can control again, you would much rather just leave this plane of existence, you are overwhelmed and lost in emotions, chronic emptiness and baffled by what you experience inside your head. You don’t know why this is happening.

You now spend your lunch in the library alone working on preparing for your exams. You think life just cannot get much worse.

As you grow, life is going to get messier, more complicated, more nuanced. You will struggle, there will be times when it feels as if it could not get any worse, then it does. I will not lie.

You will make questionable choices when it comes to love, you experience the thrills of a partying lifestyle, your social circle grows then shrinks to those who matter most to you, who truly lift you up out of your bad times. You gain your family’s wholehearted support.

As you grow, life is going to become a bit easier though. You get therapy, and meet some wonderful workers who give you hope about the system.

Where am I right now nine years later?

You have found the man you want to spend the rest of your life with, one whom respects you and sets your world on fire, who gives you the healthy relationship you deserve, and understands better than anyone what you go through. You are about to graduate university, which may be a shock given you thought you’d never get there. You have made some wonderful friends too. Your immediate circle is filled with true friendship. You find your faith system.

More importantly, you become happy and satisfied with life, you’ve learned how your illnesses work and what to do in order to quell their flames. We struggle, but we do not struggle alone. That is what matters.

My advice to you: live life, explore what needs exploring, we don’t know what the future holds, we will get to where we need to be when the time comes.

Hold on, dear one, because life is just beginning, and it’s wondrous.

All my love,

L x

The importance of a support network

Hello all. I am wishing you joy, contentment and good health right now.

First off, we recently have had an influx of new lovelies joining us and I wish to say welcome to an accepting place where I am honest about my experiences but also try to bring hope and positivity into the discussion. Please do join in, and I hope you settle in well.

For those who may not know, a support network is is a group of people that you are connected to, who help to support you through life. It could be family members, friends, support workers, people you can go to when you need them. For myself, my support network consists of my immediate family, a handful of friends, and my partner and that’s enough for me. It’s a group of people who I trust, who uplift me and inspire me when I’m feeling low and so much more. I have been relying extensively on my support network at the minute with everything that’s going on in my life.

They can act in small ways such as helping me with food or simply understanding that at the moment I am quite limited in what I can do, or it could be greater gestures such as taking me to appointments throughout each week which had been a fair amount at the end of last year.

Once upon a time I wouldn’t have dared to seek support in others, I thought I had to rely on myself because it felt like it would all be a misunderstanding. It could cause the greatest suffering to myself, opening up in a way that I didn’t feel comfortable with. But now, I have no qualms about seeking support because I know it will be there.

It can be hard personally because we are thought of in society that we should be individualistic.

Pulling our socks up and getting out there.

Doing what we need to do.

But I am here to challenge this notion. We only got to where we are today because of collective support, I’ll say that again, we only got to where we are today because of collective support, collective intuition, collective knowledge, collective strength and collective hope. So why is it that nowadays it is frowned upon to ask for help even in things such as our daily jobs? Why is it we who have chronic conditions be the reason to blame when we cannot pull our socks up and do what what society deems correct?

I dislike living in an individualistic society where I have to live under the court of public opinion that does not fit the narrative my life has took. I know of so many people who have tried to go it on their own and haven’t succeeded. I see it hurt them time and again, and through my previous work I learned that we cannot do it alone. It is simply impossible, there is always someone around who will help another individual, I firmly believe in that.

When I finally learned the confidence to speak out about when I needed help and what kind of help I needed, I was glad. I managed to gradually spread that to my few trusted friends, to my current partner and my family. While I can sometimes feel like a burden, I suppose this is all natural, I am grateful for all that they do for me. I feel no shame in asking for support, for encouragement, for love, for inspiration, for strength, for kindness: especially kindness. It is a basic human right to show others kindness, compassion and understanding; this is essential in a support network.

More importantly we all deserve a support network, we all deserve our little community that give us strength and clarity and hope among many other things. If you feel so isolated and like you have no one, I promise you there is someone and that someone will turn into many people who will be what they you need them to be. We cannot go through life alone otherwise what kind of life is it?

This is something I am passionate about. I am grateful for my support network and I love them all dearly. Although at times it may feel like I don’t deserve them, in reality I do, because I help them back and I won’t forever need help getting around the house. I might go through long periods where I do a lot other times a little, my life is uncertain right now now but having a support network grounds me and there are so many benefits to having us apart network. I say to you, you deserve the love and support that I have received and more.

All the loving-kindness to you,

L x

Year in review and looking ahead

Hello dear ones, how are we feeling?

I’d like to take a little moment just for you to check how you are feeling, take a deep breath and just settle in for a little read. I’d also like to thank you all, our little community, for all your support this year. I’m so thankful for those of you reading my posts, my thoughts on different topics, it’s been quite the year hasn’t it? Welcome to all the very new people too, you are most welcome here.

This is a bit of a stereotypical post I suppose but I feel like doing it anyway. This year has undoubtedly been hard, at times heart-wrenching, and chaotic, I could easily list and rhyme off countless miseries of the year. But I’m more about hope in this little space. At times it can be more powerful than sadness and fear, which a lot of people can experience at this point. A time when post festive season blues can kick in, or when it can feel daunting that another year is here. People online mocking those thinking 2021 will “magically” be better. But I say, what’s stopping it from being like that?

Now, I’ve pretty much kept you all up to date on what I have been going through but I thought it’d be great to just have a little summary post of things I have enjoyed, little moments, small wins and what I’m so looking forward to now in this new year.

I think one of my all time favourite moments of 2020 was when I was down at my partner’s and we spent a hot, sunny day on the beachfront, sat on a bench and watching innumerous dogs pass by. It was just such a wonderful time, where I felt carefree and I was with my favourite person. We were just sat there for over an hour, and I loved it. Christmas was also so, so wonderful and I got to take plenty of Polaroids to put in a new scrapbook, very retro. Much earlier in the year I got to present and do a bit of motivational speaking for the first time, rather than purely speaking my experiences. It was so much fun!

I am proud of a few accomplishments of 2020 including passing another year of university with flying colours, starting my final year. I have, this festive season, tried two new foods and really enjoyed them. Earlier in 2020 I also found I could watch certain foods cook without being so averse to it. These are huge wins on their own.

I have learned the true value of gratitude and been so appreciative of my aspects of my life. My strength truly has been tested like never before and I’m still coming out winning. As my dissociation got worse, I became so afraid, but with the help of others and through my own self-determination I’m getting back on track. Again, I’m very grateful for this.

So what’s ahead? Well, a lot. This will be the year I finally graduate, I am hoping to do my Master’s Degree if not finding a job in mental health. I will be moving out, across the country. I hope to do more volunteering. I will be continuing this blog. I will get answers about what is causing all my physical pain, I will be trying to get my body stronger. I hope to finally be able to have savings.

It’s definitely sounding like a lot for that. But for now, my goals for the first quarter are to focus on assignments, get a little workout regime sorted and eat a little better, have a small emergency savings fund, focus on deepening my connection to Buddhism and finding a new volunteering placement. Little actions with little steps are the key here. Of course, I will also hopefully create some good content for you here as this section of the internet has been so wonderful for me. I hope that is reciprocated.

I hope you are able to find some wins in 2020, and I hope you all have a magical year ahead filled with such joy, goodness and happiness.

Be gentle with yourself and take care,

L x

25 lessons

Good evening all,

So I love my lessons it seems. Yesterday was a big birthday (for me), I turned 25, I have had 7 additional years I thought I’d never see. Though I’m still young, I have learned a lot already, I’ve seen a lot of life in such a short time. I turned a quarter of a century, in the middle of a pandemic, it was my first sober birthday since 16 and probably my last one in my hometown (for a while at least). Yeah, that’s big for me.

So I thought I’d do a small post, just sharing general life lessons I have learned so far, it’s mainly a reminder to myself, should I ever forget. Something to reflect on as I get older.

1. Life can throw many, many terrible things at you, sometimes all at once (think 2014, L)

2. You don’t have to have everything figured out by age 18.

3. Following on from 2, plans will never go exactly according to your schedule.

4. Everything is impermanent.

5. You will see both the wondrous and awful nature of humans at some point.

6. There are over 7 billion versions of reality and what life should look like on this planet.

7. If you don’t want to experiment or “go wild” because you’re ‘young’, then don’t.

8. Live life according to yourself, and no one else.

9. There are extremes to every view and thought in this world.

10. Always seek help where you need it, in any given situation.

11. You’re going to mess up. That is an inevitable fact. No one leaves their life without making mistakes.

12. Don’t be afraid of having an opinion. It’s how you find your values.

13. Don’t be afraid of conflict. Though do not seek it out.

14. Violence is never the answer.

15. Set goals and dream, but be prepared to be flexible.

16. The future is never guaranteed, but certainly seek it out.

17. Sometimes being curious about the future is enough to find your way there.

18. Everyone has something to contribute.

19. Try your best to be compassionate, understanding and empathetic.

20. Communicate.

21. There is always something fun to do.

22. Don’t procrastinate.

23. Life has its meaning.

24. Everyone has strength.

25. Always, always keep going.

Much merry love,

L x

Reflections on November

Hello all my lovelies,

If you read my posts you know I love a good reflection. So I thought, why not reflect on a tumultuous month such as November?

I will be honest, November is a month I am struggling to remember giving that my mental state is not at a decent capacity. There were definitely some atrocious days but I can’t say it was all entirely bad and these words have such strange meanings, I guess the correct version would be it was a hard-hitting month.

So I have a couple of topics in mind, let’s take it that way. I think rounding up with all the things that cause stress would just make this a very depressing post. While I’m not for toxic positivity I do think I need to be realistic.

So, let’s start with relationships. Relationships are often a foundation of how we cope, they are apart of us. Having at least someone to back us up can make all the difference. I can happily say I have had no problems with support and positive relationships during November. My family may not have understood what I was going through, but they checkeup on me and helped where they could. Whether that’s taking up additional chores from myself or feeding my wonderful guinea pigs: and they gave me respect. My partner was fantastic, he was essentially my sounding board and while I tried to be a good partner to him, he was very respectful when I couldn’t give 110 percent all the time. So no complaints here!

I guess health would be the more contentious issue. I will be straight up honest and say that my GP he was of no use during this time, I understand that there are many stresses going on behind the closed doors (I’ve seen what happens as a GP receptionist). But I have come to find out that when I asked for my antipsychotic back and he made no mention of my circumstances to the psychiatrist it essentially was “can L have her antipsychotic back?”, so I’m glad I took it upon myself to write a letter about my mental capacity when I was more lucid. I would like to let you know that I have since gone it back until my telephone assessment with the mental health team in a couple weeks time. They were shocked at how I have deteriorated and quite unsure as to why my GP did actually take me off it. So I am happy to say I have been sleeping for the first time in many weeks.

With physical health, I’m not further forward until I have MRIs and the next rheumatology appointment but I have since purchased a support to help me sit properly, knee braces and a cane to walk better. They do help so that is also a bonus and I haven’t gotten physically worse which I really count as a win.

University! What a bonus. It’s been a really positive one, because I got back my first assignment results for my final year at 72% and 78% which I am quite happy with. I have feedback that is constructive and can use in the next assignment to hopefully improve upon. My tutor who will be helping me on the research project in particular has been so supportive and understanding which is really just refreshing so I know, should I falter infuture they will be there to ensure that I take care of myself.

November felt truly terrible in the moment but this is why reflection is important. You gauge the true impact of each moment and my reflection has shown me that yes it was awful but I had a pretty successful November, that’s my takeaway and I think it really puts things into perspective.

Wishing you all my love,

L x

Lessons I have learned from anger

Good day to you lovelies. Are you all settled in?

I thought today would be a good time to finish my lessons learned for now. Today’s topic is, I would say, a bit contentious to those of us with EUPD. Mainstream media would paint us as aggressive, quick to anger, and act on blind rage. Whilst I have had moments where rage and anger take over, this is simply because for myself I do have difficulty in dealing healthily with anger. It is one of the most potent emotions I experience, an ever-consuming fire. But it would always be contained, in the past I did not handle it well at all and it turned into suffering.

I want to preface this by saying I have never acted on my rage and hurt others physically, nor do I condone this in any way.

Like all emotions, anger has its place in our emotional repertoire and experiencing anger in the way I have, and reflecting on this in therapy has taught me a couple of things.

When boundaries have been crossed
Now, we all have boundaries within ourselves that safeguard our well-being, whether we are aware of them or not. Some are instilled in our conditioning as we grow, others we explicitly form ourselves. It is common for anger to rise in me when my own boundaries have been crossed, whether through words or actions. I have learned now more about the boundaries I have, and when I need to put some in place temporarily to protect my well-being and reduce the chances of me having to experience anger. Though I have healthy outlets, it certainly does not lessen the intensity of the experience.

Anger signals when I view, hear or experience things that go against my values/moral compass
Much like boundaries, we all have our own values as humans that guide our morality and ethical compasses. Oftentimes, I have become angry when my values have been crossed, when I witness something that goes against who I am as a human being. For example, injustice, or reports of hatred in the news. There have been times when my anger has gone to extremes, I will not lie. But each time I become angered now, I ask myself why, what is it in particular that has caused this experience, what can I learn from it?

Not to hide emotions
This is a big one. For so many years, I was used to putting on a mask of sanity, if you will, hiding anything and everything for the sake of others. To lessen the stigma and annoyance by other people. Yet in reality, it made things so much worse, not only for myself but to others around me, they would think I was fine and that was not the true picture. In order to properly process my feelings and emotions, they need to be fully experienced, fully shown, appropriately expressed and then dealt with.

What has anger taught you?

Wish you joy and happiness,

L x

A ramble on my health

How are we all? I sincerely hope you’re all well as the nights get earlier.

So I haven’t done a ramble in a while and I know it was liked a while back. So I thought I’d do a little update on health. I find with both my physical health and mental health, each will dip one after the other.

In August, I had a day being bedridden and thought, “I’ll heal up quickly, my arthritis has spread to my knees but I’ll be fine”. Let me tell you, it definitely was not fine. After a few blood tests, medication changes and many calls with GPs I was finally referred to a rheumatologist. I now spend most days in bed, I have almost fallen a few times because my knees have given way. Just the other day I spent 7 hours in A&E due to my ribs burning and having shortness of breath. I am rather immobile. On top of this, my mental health became disastrous at the same time which has been very rare. I had an awful episode the other week.

Yet I’m still here.

I’ll be honest, the fatigue is getting to me, I really am feeling like everything is out of control. I started November 1st utterly depressed, then manic, making lots of goals and plans to improve my fitness and mental health. Yet it was not to be after this week. And I have accepted that. I guess the fear of what is going on in the world got to me. And that is okay too.

People often say we have to help ourselves and have this notion that we can just fix ourselves when really, chronic conditions are usually pretty much here to stay.

So what have I done to help myself? I have followed basic self-care and fought to be referred to rheumatology, my appointment is next week and while I will definitely struggle to get there, I will be there. I have took up private therapy to work through everything. I am taking new medication for my mental health, having been taken off my antipsychotic and adjusting to that. I have accepted that all of this is a process that could months, but I’m prepared to see it through. But for now, I shall have to do what feels right for my body and mind, even if it’s not the way I want to be.

I have found that in these times when everything seems wrong, we must especially have hope, find the strength to keep on and keep going forward, otherwise what was the point of starting the journey to fight? I will not lose the joy and wonder of life. I will keep writing, reading, studying for uni, studying Buddhism. I will keep myself going and fill life with what I love as much as I can.

I shall also use the wonderful Black Dog Institute mood tracker to keep an eye on things and see where I’m at with myself, my 2012 style.

It is times like these where I really see the inder-dependency of both mental health and physical health and the impact of each other and how they link. When I feel so limited in my body, my mood utterly drops. When my mood is low I don’t try to do much with my body which hurts it. Times like these are why I’m so grateful for when I am well. Yet, I’m strangely grateful for these times too when I think about it and reflect. I know that doesn’t make sense. But nothing is permanent, and I learn what I can from these points and I’m reminded of my unadulterated strength of being able to get through this.

Keep going lovelies, we got this.

Much love,

L x

Lessons learned from mood swings

Good morning one and all. How are you today, have you had enough rest, plenty of water?

Let us get straight into this as I think it may get a little interesting. One of the facets that make EUPD so complex is the mood swings. For me personally, my mood could change in second and minutes, there would rarely be a day that passed where I was only facing one or two moods. It was an endless torrent of waves in a crashing storm. Once upon a time, I had little I could do except let the waves of emotions batter me about in a broken dingy.

I wish I could say I have learned many valuable things from my mood swings, much like depression and mania have taught me. I suppose in reflection I have learned some of the vital lessons in life but little in way of useful advice for you all.

How to fight
When I say how to fight, I most certainly do not mean violent acts. That is never the answer, which anger taught me (more on that another week). I mean in the sense of keeping on going, to ride the waves. To not let my emotions stop me from living life. I guess I only, truly, really learned on reflection when mood swings are at a minimum now. I was so sick of constantly changing, I cannot imagine the stress my brain was under, flurrying chemicals to chemicals and nerves and parts of the signal, an endless barrage. I guess I got so sick I wanted to show my brain what was what by keeping on. Never ceasing. Drinking and partying, college, work, relationships, episode after episode. I still kept on. That is how I learned to fight initially, just see the next day through.

Then 2018 happened. I had to find another way. And so I did. In seeking and demanding support. In defying misconceptions held by the mental health services, which is ironic I know. I wanted to start seeing the good, I tried to deny the villain-esque thoughts but that just made things worse. So I went further and fought for therapy. I went head on with whom I now call Medusa (borderline me). I showed Medusa her new cage and have carried on with life, with minimal interruption bar winter.

Life is messy
I have not had the most conventional life I will admit. But dang, if mental illness has not prepared me for the messiness that is life, then it has not taught me much. Life will never be a ‘happily ever after’ and I have made peace with that: I am just glad to have peace sometimes. There are always going to be setbacks, and instability and hard times, heart-wrenching times. But I have learned, with a healthy support network, a good partner by your side, and a determination like no other, then life’s messiness won’t always mean going back to square one.

We do not have to go back to square one, we could even go to square one and a half, we may take a couple of steps back, but we will always go forward. And I hope you take this as a sign, that if things are tough right now, there is a way forward. One thing that helps me sometimes (when I can do it physically), take the words from House of Pain “Jump Around”.

Much love,

L xx

A good day

Credit to chibird.

I love a good day, don’t you?

But what does a good day mean to you? Much like the adorable picture above, I imagine we all have a very different picture in comparison to one another. There is so much variation that makes a good day, and having these days are worth living for

For me, a good day lets me have that happy feeling at the end, where I am refresh feeling refreshed and light hearted but knowing I had accomplished something that day. No matter how big or small, such as being able to do some housework, even sending an email.

The beauty of a good day is in its uniqueness. You could accomplish so much, hit some personal targets, or good do what you needed and rested. I think the most important part is feeling happy at the end of the day: feeling good.

What constitutes a good day is up to you, whether it is filling up the day with hobbies, or what needs to be done; the brightest way to see if the day has been good and joyful is through reflection. A way to do this is through the classic ‘what went well’ exercise used in positive psychology. By listing things that went well, no matter how small, much like gratitude, and then writing down why it went well, how it went well, you will find the good in almost every day.

We need to fill our heart with happiness at this time, in all our accomplishments, no matter how minor they may seem. Because we not always have good days, but there is bound to be some goodness in all days.

I wish you all happiness right now,

L x

Arthritis, physical and mental health

Good, good afternoon everyone, how are you doing?

Come on in and let’s have a little chat – I am afraid that this post may not be as positive as usual and there is a content warning for this post: I speak around depression. But current circumstances are something I want to talk about.

Essentially, I have had problems with my back since I was in year 7 (12 years old), I slipped on ice and tore the muscles in my lower back. Every so often, I would have a flare up that resulted in some quite severe pain. I would go to the doctors and, like clockwork, be prescribed some pain relief and onwards I would go. In December 2017/January 2018, it was really bad. I ended up needing an MRI because of the sensations I was having down my legs; numbness, burning, pins and needles. The A&E stated it was muscular and that the MRI would show nothing. It turned out I have a couple disc protrusions and arthritis in the lower half of my back.

As you can imagine, I wasn’t pleased. But I went on with the pain and taking medication as needed. It eventually started in my hips over the next year and I ended up (and now) taking pain medication daily just to keep on top of the arthritis. Recently, my knees have now given way and the bad flare ups can last for a few weeks. But the toll it has taken on my mental health is something that needs to be discussed. I hope by sharing this, I can help someone else reach out if needed.

Most of the time, I can quite happily continue on with life, make light of my situation and just do things as best I can within my ability. But these last few weeks, with my knees being swollen and having odd sensations, I can barely walk for 15 minutes. I have had to rely on family to drive me to the shop, or to the vets for little Brenda. It is not a great feeling, I will grant you that. But each time a flare up occurs, it seems to feel worse. I hit a very low point, fuelled by frustration and panic. One thought that has recently stuck with me is: “if this is me at just 24, what am I going to be like when I turn 30, or 40?!”

It is quite scary how much I am impacted, because I worry about my physical independence, I have always hated relying on others, feeling like I should always depend on myself only. To me it is a very real possibility that I just will not be as mobile in just a few years or decades. It fuels my anxiety to an extreme. Most people will say not to think like that, but if I live in complete ignorance, then the shock of what may come will hit harder. That expectation does not get me low despite the anxiety, it feels realistic.

But when I have flare ups, yes, my emotions run high. This is because I suddenly feel so limited, unlike with mental health, I don’t have any warning signs, I wake up and am stuck in bed. If the pain is beyond control, I do become upset, I can become someone who feels like everything is meaningless – near nihilistic. I am like this for the first few days, just wanting to cry and do nothing else. When I become used to my “limited” capabilities, I adapt, so I can study in bed, have a little more assistance with the guinea pigs or getting somewhere I need to be. I am thankful I have such a great support network.

At the moment, I am struggling a little bit with adapting, I am unsure how many weeks this flare up has been going on for to be honest. It feels like a long time. But that is what happens with a chronic condition. The ways in which I cope I feel are healthy, I use the spoon theory to delegate my time well, I have found ways of adapting so things I need to do are still done without much impact on my body or mind and I have a support network to help keep my spirits up.

One thing I am truly thankful for is that I never feel worthless, I don’t feel as devalued because I cannot do as much. I remind myself, the pain is temporary, this is just a temporary new normal. If you suffer with chronic pain, I hope you know you are still as worthy as any other human, you are absolutely brilliant and I see you. I applaud your bravery for fighting every day and continuing on as the fabulous human you are. Because it is hard, at least in my experience. The impact on mental health is no laughing matter, and if you need help I hope you seek it.

Keep on going,

L x