I want to give up

ItsJeni

Hey all.
Hopefully you're having a better time than myself. I'm finding that I'm 'self-destructing' a lot recently and I want to give up on maintaining my health. I'm irritable and snappy, skipping meditations, and not doing anything to help myself in general. I think I'm just feeling massively overwhelmed and I'm sticking my head in the sand but I don't know for sure. The last 6 months have been more than a rollercoaster with diagnosis and deterioration in my health. I've discovered I have hEDS, MCAS with anaphylaxis, POTS, and genetic issues meaning I'm a carrier of haemachromatosis and prone to iron fluctuations.
My days currently consist of working, sleeping, or ignoring everything and wasting my life on stupid mobile games. I need to pull myself out of this hole but I don't know how to. 

chiarieds

Hi again @ItsJeni - hEDS & it's comorbidities aren't much fun, & I see you've now been diagnosed with PoTS which seemed suspected. All these diagnoses & coming to terms with them takes time; having one is bad enough! I think we all have days when we lack motivation, & sometimes you just have to be kind to yourself too.

What I as another hEDS sufferer do, as do people with many other disabilites, is try to set a target of one constructive thing to do each day, even if it's something so mundane as hoovering or doing a load of washing. I don't beat myself up if I just can't do it, but, if I can, then it becomes a small achievement. Some people make lists of what they hope to do, & there's satisfaction in crossing each one out (hopefully).

If the weather would improve, that might also makes us all feel that bit better, tho the lighter nights are helping.

Try having a set time away from your phone each day, & hopefully get your mojo back again by these small steps instead

ItsJeni

Hi again @chiarieds I've tried most of that. My partner isn't getting it though and he just says that it's a shame the day has been wasted and it sucks for him. He doesn't try to understand. 
I'm fully aware I'm probably making things worse missing all the antihistamines etc but I can't bring myself to medicate all the time. It's exhausting keeping track of it and my partner being on top of me about it all the time. He's also stopping me buying a different car which would help me (an automatic with a decent boot for my wheelchair instead of my tiny manual).
Work is also on top of me for my absences and they're using all my annual leave to cover my hospital appointments because no one will swap a shift with me.
I'm battling to just exist and I really don't need these extra battles right now. 

chiarieds

Hi - someone not living with what we go through can have a difficult time in understanding what it's like, unfortunately. It wasn't initially about hEDS, rather someone with Lupus, but have you come across the 'spoon theory?' Please see: https://www.verywellhealth.com/what-is-spoon-theory-6822953 Simplistically it explains to others why we struggle, & there's a link about why 'pacing' is important, not just with ME I might add. 'Pacing' was the hardest thing I ever learnt to do, tho in theory I understood why it might help.

I'm sorry about the difficulty in you getting an automatic car exists. Perhaps if you can help him to understand in what way it would make, not only your life better, but then, by a knock-on effect, his, this might help.

Are there things that you can do together such as ensuring you both have a healthy diet, which really does matter, & any interests you might share which aren't too taxing for you? He needs to gain a little understanding as to how you feel, & you both need to ensure that you still make time to do things together.

Sorry, but as a long-retired physio, I have at least personally found that exercise matters; very unlikely walking a couple of miles a day, but perhaps just gentle stretches. There's also many resources here in looking at managing chronic pain, something I'm quite passionate about: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

Lastly, I have been remiss in not mentioning Dr Ann Maitland to you; incidentally she also has MCAD. She's an American immunologist with a great understanding about EDS, as you'll see here for example:https://www.youtube.com/watch?v=RS8M8v0MtP0

Whilst antihistamines are not always the answer, as she mentions, try them first. Perhaps set alarms on your phone as to when you should take them to give them a try. Then, if they don't work, you could discuss this further with your GP/specialist.

I do hope both you & your partner will work together in finding out more, & my best wishes to you both.

NeonNomad

It's totally normal to feel like you're self-destructing sometimes, especially when you're juggling so much. Have you considered talking to a therapist or counselor about what you're going through? Sometimes having someone to talk to can really help lighten the load. Also, maybe setting small, manageable goals for yourself could be beneficial. Even something as simple as going for a short walk or spending a few minutes meditating can make a difference. And hey, don't be too hard on yourself for playing those mobile games. Sometimes a little escapism can be a good thing. Just try to find a balance, you know? You're not alone in this, and there are people who want to help you get through it.