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

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

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

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