Dec 092014
 

I’m frustrated. Mostly because of illness/disability stuff. And I don’t know how to deal with it. There are various things I’m frustrated about, but I don’t know how to deal with them without making myself more ill (I can explain the basics okay but going into the details is so draining I can’t just ask someone else to help). The frustration isn’t helping.

The kitchen is a pigsty. Again. I tried to investigate cleaners but I’m not up to contacting them and explaining everything that would need to be explained. The carers are limited in what they can do, and it’s back to the point they basically can’t do anything. Johan can’t do it due to executive functioning issues, and can’t ask anyone else to do it (or let me ask someone else to do it if I have a good day) due to anxiety issues. Esther has similar executive functioning issues to Johan and it isn’t fair to expect her to do it all anyway. So I’m stuck. I’m sure nice people would offer to call people for me but it took me 2 years to get a 2 page document to give to the carers written and printed so it’s highly unlikely I’ll be able to provide them with the information they need anytime soon. I want to just go in there and do it myself but that’s impossible from bed.

My bedroom needs tidying. I don’t have enough storage space for everything in here. Now I can ask the carers to help with this, but at the moment when they come I’m either asleep or feeling horrendous, and I don’t feel well enough to cope with the movement/noise until after 10pm. I might need to just suck it up and deal with the payback it’ll cause if they do it while I’m not really well enough as I’m meant to be going to the hospital on the 16th and I’ll need the room for the stretcher. But it takes so much energy dealing with the constant questions about where things go (which I mostly can’t answer because I can’t see if there’s room on the shelves or in the cupboard or anywhere else). Then it takes one day for there to be random stuff on the chair, wipes on the floor, I knock things off the bedside table, random bowls or plates to be left in here, toothpaste not taken back to the bathroom. No one is to blame but I can’t fix it, and I’m not well enough to ask anyone else.

I need to sort getting the sofa, broken wheelchair and boxes of electronics taken by the council. I nearly got the first part of this this done but needed to know how many boxes of stuff there are as they’ll only take what’s listed. Johan said he’d let me know but never did. The second part requires Johan to pay for them to be taken which I’m scared he won’t be able to do when it needs doing. At the moment there’s no way to automatically pay online, and I’d need the council to tell me how much it’ll be because there’s nothing on the price list for boxes of broken electronics and computer parts. With Johan not doing well we’re stuck and it means I can’t buy the daybed and they might refuse to put my hoist in there (and in here if my bedroom is still a mess).

We’ve heard nothing about Johan’s support. The last we got was a letter with a provisional budget and his statement of needs but it’s been silence since then. Neither of us are in a fit state to be chasing it up. The support for him would, in combination with my care being rearranged to work with it, solve most of the problems we’re having, as some of it is to communicate with other people for us. I basically can’t read letters on paper now without massive effort (the words fade in and out and the letters keep switching around – it’s better on a screen with larger text as they stay put more) and made myself stupidly weak just trying to read the DLA form that was meant to be in months ago. I want to fix things but I can’t.

I’m not asking for advice on how to solve the issues I’ve mentioned, just wanted to state some of the things I’m frustrated with. What I am asking is how can I cope with the frustration of things being wrong but not being able to fix them?

 Posted by at 3:12 am

  2 Responses to “How Can I Deal With Frustration?”

  1. Hi Danni, I left a comment on an earlier post but I think I forgot to mention I’ve had Severe ME for 18 years. I am mostly bedridden but have limited mobility and can do some personal care tasks for myself. I can’t say I cope amazingly well but I’ll share some things that help me.

    1. Keeping a list of all the things I need to do. I use notepad and group things by priority and what I am able to do. So there may be higher priority things lower on the list that I can’t do now but hope to in future. I scan the list and re-prioritize often. This way I don’t have to worry that I’m forgetting anything important and I can focus on just what I need to do each day. Keeping my focus to one day at a time helps keep things from being so overwhelming. Plus I know that the important things are on the list and if I keep going day by day and take good care of myself I am taking steps towards getting those things done.

    2. This one is definitely not for everyone and maybe is peculiar to me but I find survival stories helpful. Things like the 1972 plane crash of the Uruguayan rugby team. I think because I identify with the emotional and physical struggles and there are similar things like hopes being raised and then dashed and unexpected crises that come up. Also things in history like the workhouses and tragedies like concentration camps help give perspective in that I feel part of the greater human condition and am aware that so many have suffered and far worse that I have. I don’t mean that to be taken in a “chin up because others have it worse” sort of way, just that it gives me a sense of connectedness and perspective that I find helpful. Big caution that these kind of stories can be too stressful so only try this if you feel confident you can cope with that.

    3. Some people find religious beliefs to be very powerful in coping. I don’t subscribe to any particular religion but I do have certain spiritual beliefs. I find it helps again with perspective to feel part of something larger and to have a sense of purpose. Having a sense of purpose in the world is helpful too, like the things you do to bring awareness to ME and Autism.

    4. Distraction. The problem with distraction is it can be so easy to overdo and sometimes the usual activities can become a rut and end up making me feel like I’ve wasted precious time and energy. Sometimes doing something different can help. I find stories on a grand scale like sweeping epic dramas or fantasy, such as Lord of the Rings, can be better and take my mind to another place, giving me a breather and also feeling like I didn’t waste my time because I’ve had a meaningful experience.

    I hope something in there might help some or maybe help someone else who reads this. Fingers crossed that things get better for you soon!

    -Jan

  2. Last night I had a frustrating moment and realized I forgot to mention sometimes you just need to vent and nothing else will work. Or at least not until after you’ve done your venting. 🙂

    Also I forgot about a book called How to be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers. It’s all about coping, but although I was interested in learning more about Buddhism, I found the concepts frustrating and realized it’s not my cuppa. And I need to mention the author has at times been given a diagnosis of CFS, among other things, and says CFS and ME are the same and her brief description of ME in the book is full of misinformation, which is so aggravating but not surprising given how hard much bad info there is about ME in general.

    Toni (the author) is a great person though and even though it wasn’t for me, I would be remiss if I didn’t mention this book since a lot of people have found it to be a great help in coping.

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