Love, Family, Friends... And Me!

Since becoming chronically ill and disabled.. I can honestly say that I've lost of a lot of people I loved and cared about. Friends and family. Long term friends, school friends, people I made a connection with through college, work and other things from my teenage years and early adulthood. Family that I was close to and had that tight bond with.. now our lives are completely different and no longer in contact. 

I'll be honest though. It's not always because they don't care, or their rude or ignorant. And this goes for all and anyone I talk too and connect with.. It's not always easy to approach someone who is chronically ill and disabled. The right words even with good and caring intentions don't always come out right.

Take for instance "I hope your feeling better soon!". This one sentence makes me cry.. I know the person saying it to me isn't trying to dismiss what's wrong with me or my individual disorders, illnesses or disabilities. But because they don't understand as they aren't living it or they haven't experienced it for themselves so don't have any understanding other then someone explaining it. My reaction isn't because I'm feeling sorry for myself, or because I'm sad. But because I wish and hope that too.

Instead of “I hope you’re feeling better soon,” some simple phrases that mean the world to me are things like, “I’m here for you,” or “I can’t imagine what it’s like, but I’m here to listen.” Small gestures like these feel like a breath of fresh air on the hardest days.

And I think with anyone who's health is declining and it's a battle.. hearing certain questions or comments does really knock you..

But then you meet those people in your life who fully understand and support you regardless if they're living it or going through it. The people who support you even if all they can do is sit with you and chat about absolute shite! 

The ones who you may not see everyday.. but there's always a message from them.. whether it's "how's your day been? What you up to?" Or some funny or relatable video or meme. 

The ones who you can type a simple message out to.. and they get it! No questions, no doubt.. just simple support. 

It may seem like nothing to some, but to me, those little messages are a lifeline on the hardest days. It’s incredible how much comfort they bring.

See I have a quite few of those people in my life.

Ones who I see daily.

Some who I call and message but don't regularly see.

Quite a few who are online and worldwide.

And then those who are in passing. Whether it's social media, in public, or wherever the situation. 

So let's break each type down. As before.. you lucky lot will have me as an example ahahah.. so let's start with my romantic relationship. 

From my perspective.. I'm lucky. I have a husband, partner, best friend, and carer all rolled into one. He's supportive, caring, kind, understanding and fully gets my days are completely different every single day. He completely gets one day will be good and things will be sunshine and roses.. (well not quite but I can dream can't I.. haha.. yes I'm telling myself what the hell aha..) and some days will be shite! And what I mean is some days I will and can do more then days when I'm literally bed bound. Which if you ask any chronically ill and disabled person.. they will all say the same.. some days we have to rest, and rest means bed days or sofa days. 

The days that I do struggle.. he's making sure I'm eating, drinking, taking my medications and he's always helping when it comes to my seizures, tic attacks and when my speech is seriously affected. 

He went from having a pretty much abled bodied me to now spending his days caring for me! I wont lie, and I know full well that there will be a lot of other partner carers who will say this.. it's not easy watching the person you love and care about deteriorate and get so poorly your having to look after them 24/7. Having your relationship go from everything being 50/50 or however you worked best to now being sometimes one person doing a lot more then the other.. that can strain any relationship regardless of how strong, unbreakable and compatible you are. 

We have our own language, a way of laughing through the tough times, and we’re still learning together. He’s my rock, and we’re stronger because of the journey.

But let me let you in to a little secret.. I've just moved. Being chronically ill and disabled, having 4 children, dogs and trying to move.. it's absolutely stressful as hell! And I won't lie.. it's pushed several buttons of my relationship, both with my husband and my kids. 

Hubby getting stressed from being the one having to handle all the heavy lifting.. and sorting removals.. to then making sure everything is packed as I can't get around and sort what I'd usually do. My jobs have been to sort kids, dogs and paperwork! The one thing I can mostly do myself. Kids just being kids having fun and getting over excited at a new place.. but then pushing it when I say no more.. or calm down now! Usual kid behaviour!

What I'm getting at though is even the most strongest of relationships can be tested and pushed at some of the best but stressful times. Not because they want to be nasty or piss you off.. but because they see things and do things different.. and that's fine!

Then there's family and friends that become family! Yep.. blood and non blood family. And let me start by saying this.. blood is not thicker then water and family does not mean blood related! These people are my chosen family because they don’t just support me, they lift me up in ways I could never have expected.

I'll be brutally honest here, a lot of my "blood" family relationships are non existent. A mix of growing apart and living completely different lives to actually cutting off members due to the attitudes and behaviours. Some hurt. Like it's a daily upset. And some it's as simple as it is what it is! You can't always control everything and somethings are out of our control.
And others behaviour is one of those. 

Unfortunately for every single one of us here and now, how others act, is one of those things that yes we can have our own thoughts, opinions and actions towards and on.. but ultimately it is that one persons responsibility. And respectfully, we all have the right to act according to how we view things. Therefore if having no relationship with a certain person is the best thing, then that's what needs to be done for good mental well being. I'm not one to argue, and I'm certainly not one to cause conflict and/or use physical actions against someone else. So I'd rather just phase myself away from the negativity then cause any unnecessary worry and dramas. 

Which leads me to friends. The term friends for me doesn't just mean those I see or speak to in real life. Online friendships are just as real and important. And I won't lie.. some of my closest and most dearest friends are people I've met online. Now don't get me wrong. I have friends still who I speak to from my childhood, schools and college. I have friends who I've met whilst working. And I've also my friends who I've met through my children and adult life. All have different qualities, personalities, quirks, flaws and everything else.. but the one thing they all have in common.. their friends! 

Some of even go as far as saying they are my chosen family. And I say this purely from things I've learnt and watched growing up right til the present. 

It's not about who's been there the longest, or who's done this and that for you. It's about who walked into your life and never left or questioned you. They've been there through the good times, the bad times, the heartbreaking times, the shit hitting the fan times and every other scenario, phase or moment you ever needed someone. And these people, they can literally come out of know where.. but they come into your life when you least expect it and don't ever leave! 

Now I can honestly say, I have a few of those amazing beings in my life. Some like I said above, I see or speak to daily. Some every now and then. And some always pop up when I least expect it. There's no disrespect or annoyance because you've not spoken in a while or because they constantly talk to you. It's just always happy, kind and beautiful conversations or absolutely hysterical giggle fits from gifs, reels and memes. 

Now, I’m all for maintaining good mental health, especially in any type of relationship I have with someone. 

No relationship should ever feel one-sided, and I’ve learned to choose peace over feeling drained. Sometimes people just need time to grow and change, and that growth can lead to stronger, more balanced relationships. No one should settle for anything less than a connection that brings mutual support and respect for both people involved.

In the end, it’s these imperfect, resilient connections that keep me going. They remind me every day that even if life isn’t perfect, we can make it beautiful together. So yes, like Wi-Fi, sometimes we lose the signal, but with the right people, we always find our way back to a stronger connection.