All the craziness

It’s been a hell of a few months, and I’m still trying to process it really, as there are still so many ongoing issues. So we moved a while back and we’re finally getting settled, now we have almost all our belongings in our new place, my meds are finally settling, my diagnoses and treatments are getting sorted out, so some good news. Then there’s the rest of the story.

Because of my health issues, I have reached a point where I’ve had to admit that I need more help, at least with my mobility, so I ordered a wheelchair at the beginning of April. Long story short, it arrived the wrong colour and damaged, so I started the return/refund because they couldn’t replace it with the right one. Now almost two months later, eBay finally refunded it and it’s gone. Getting one next week though now, so hopefully I’ll be able to get out and about more, for which I cannot wait.

On top of all this, we’ve had constant building works around us, and inconsiderate neighbours causing problems, so rest hasn’t come easy, making my other issues worse, from my everyday pain levels to the number of dislocations and other symptoms.

My aunt passed away last month as well. She shouldn’t have, but she’s gone, and that’s still pretty raw; like how is it I’m never going to see her again? I don’t really know how to deal with it really, but I’m thinking about getting a tattoo for her and for Andrew.

It finally feels like things might start to look up, with a couple of things planned over the next couple of months, but I’m still so aware that every time it starts to settle, something else happens to make things more difficult. I’m so grateful for everyone that’s stuck around for me, when I’ve been difficult, absent, various forms of expletive, everything. When I’ve felt so down, it really is the little things that have cheered me up, even just a meme or a little comment, so thank you, all of you x

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Loneliness

I’ve been fighting the black dog for years, from my teens till now, and it’s not any easier. I still miss the clues when I start slipping, and it takes a while to realise. It’s slightly ridiculous, but at the moment I’m further into it than a while.

Without meaning to, I’ve let myself fall, and I don’t really know how to pull myself out. My partner does the best he can, but there’s only so much he can do when he’s working most of the week. I don’t mean to snap at him, but it’s difficult when I feel crap.

I snapped this morning, but all I’ve done recently is pick up after him and I want to spend time with him properly. The last time we went out was an awful night with his family, and before that I can’t even remember. There’s nothing I can seem to do to make him understand why it’s getting to me. I can’t get out on my own, I know no one close enough for meeting up when I can’t drive or anything, and instead I spend every moment of every day stuck in.

What am I supposed to do? I’m trying my best, but I’m lonely and tired.

Hope and Disappointment

Moving forward: it’s what you’re supposed to do, the expectation, but what do you do when you feel trapped or stuck?

So I’m settling into my new place, making it a home and trying to get everything set up, but a lot of the time, I feel stuck. I’m not talking about physical limitations necessarily, but the mental ones. Over the past few years, I have gone from being very active, always out for something, always helping someone or trying to just make the most of my time. It was exhausting, but I never felt like it was a burden or too difficult.

I keep trying to do as much as I’ve always done, but the result is somewhat different. The slightest physical exertion and I get knackered out and I hurt for a week afterwards. Mentally, I try to keep occupied, but my focus is all over the place with distractions and I have no energy for pushing through it. Reading is just too focused right now, leaving me looking over the same line over and over again. People ask for advice and I try to help them, but sometimes I just don’t find the words to say what I need to.

I’ve always been a people pleaser. I like helping people and doing anything I can to make their lives easier or happier or the like. Nowadays it feels more like I’m letting people down more often than not, either having to cancel or having to just drop out of sight for a while to recuperate. It’s never about the person, but it is about my own energy, my lack of spoons. It is exhausting being ill, and as nice as helping people feels, there is a limit to how much I can give when I’m in pain and haven’t slept properly in days.

I’m tired of letting people down, as well as of being let down. Promises mean a lot to me; if you say you’ll do something or be somewhere, I need to see you then and there. Whether you’re family, a friend or an aquaintance, just do as you say you will. With the little energy I have, I want to spend it on helping people and spending time with people I love, but not if those people won’t follow through on their word.

These cancelled visits and disappointments all just make me feel stuck, because they’re my escape, they’re my way to keep my head above the water. Physically I can’t do much, but mentally, I try to keep going. I try not to let people see the worst of what I’m dealing with, but I think some people still need to see even the basics just to accept things aren’t so simple, let alone appreciate how much energy it takes to put on the happy, healthy face.

So when you feel stuck? I try to remember everything I’ve done, everything I’ve managed, and look for things to plan for, look for little projects to do on good days, and focus my energy on the people who do keep their word, people who are there for me as much as I am for them. Things will get better eventually.

Focus

I don’t know if this is something everyone experiences, I’m sure a lot of people do, but I tend to find that whenever things start going wrong, I focus on them. I get caught up in that one problem, and then start honing in on the other things going wrong. I don’t mean to, and I know it isn’t healthy, but sometimes it just can’t be helped.

The world at large seems to be guilty of this in recent times, noticing the troubles and negativities that litter the social conscience, whilst ignoring the smaller good tucked into corners. The story of Pandora’s Box, while about the sins, is about finding the good in the world, the light at the end of the tunnel. With all the issues thrown in our faces each day by the media, we need to find those good things more.

Each day when I wake up, I think about all the things I need to do that day, all of the hassle I know needs to be dealt with. I’m trying something new instead. Every morning, I’m going to think of maybe five things I’m glad of that morning. As corny as that may seem, it’s helping me shift my focus. Instead of all of the housework and issues that need resolving, I’m thinking about the fact that I’m not in as much pain today, or I had a good night’s sleep; the fact that it’s getting lighter earlier, and the weather being good on other days.

It might only be a little thing, but maybe things will start to look up more. I’m going to try remembering to tweet those five things (if I remember) each day, and if you read this and feel like doing the same, you can too. Tweet #5things

Taking back my life

I’ve not posted anything in almost two years now, and I have decided to try again, to be more consistent with things. Situations change, but there are always constants, and I’m hoping this blog will be one for me. If anyone else reads it, then great, but otherwise it doesn’t matter.

Since moving again, the flat is great, my partner is great, but I’m alone around about 80% of the time, and that’s just not good for me. I keep finding myself just sitting not wanting to do anything, not wanting to talk to anyone. Hours will pass before I realise I need to eat something, or before I realise I ought to be doing housework. I can feel my depression slinking back into my everyday and that is the last thing that I want.

I can’t get out of the house myself, I have to have help. I don’t get to pop to the shops or run out to meet anyone. The only time I get out of the house is the occasional car trip to the shop. It is lonely, especially when the people you know and love are busy or too far away to do anything. It’s the loneliness that is getting to me, constantly just silently waiting for this or that.

I may not be physically up to much, but I can start writing again, either through blogging or creative writing. I can do leatherworking and baking when my body allows. I’ve had enough of feeling worthless and like I’ve failed simply because I got ill.

Medical conditions, disabilities shouldn’t be a life sentence in solitary. I’m still fighting for my diagnoses, but things will get better. Postural Orthostatic Tachycardia Syndrome (POTS) will not take over my life, just as Ehlers-Danlos Syndrome (EDS) won’t, and nor will my depression control me anymore.

After so many people have told me it’s all in my head, or I’m not worth any effort, or that I’m making it all up, it is time to stop and say no. I have something going on with my body that isn’t “normal” and I don’t know what exactly is going on, but I am trying my hardest to reclaim my life, maybe go back to uni, and just find some meaning beyond feeling sorry for myself.

I’m not writing any resolutions for this year, because I’m instead setting myself a challenge; to take back control of my life and get into a better position mentally and physically. Wish me luck!

GameBlast16

This weekend (27-28th February 2016) I will be taking part in GameBlast16 to raise money for the charity SpecialEffect. They raise money to enable disabled people to get involved with gaming and to enjoy a hobby many people take for granted. I myself have rheumatoid arthritis which limits me a lot, so this is something I may need in the future. It would really mean a lot to me if you took a look and got involved. 🙂

Check out my stream at http://www.twitch.tv/thegeekgirl45/profile and donate at https://gameblast16.everydayhero.com/uk/lauren . The stream will be live from 12pm GMT Saturday to 12pm GMT Sunday!