Flash Says…

Two versions of me

Posted on: 2011-11-26

There are two versions of me at the moment. When I get a chance, there is normal, competent, capable me. I am enthusiastic, working my way through lots of volunteering work at an art gallery, as chair of a residents’ association and of a disabled people’s mobility forum, and other things besides. I sit at my desk typing away, chugging through a solid to-do list, interacting with friends online, getting excited about what’s to come.

But one or two days a week, there is another version of me. Listless, exhausted and depressed, lying in bed, dizzy if I dare to sit up and weak if I stand. On days like that I fall asleep when I try to focus, and spend much of the time dozing. I am too tired to eat, and it would be dangerous to attempt a shower.

I’ve been that second, soulless, person rather too much lately, as a result of my pain, and the side effects from strong medication. When it happens, it’s impossible to hold onto memories of being capable. It may only be a day since I went to the shops or drove to a doctor’s appointment, but it feels as though I cannot do anything – and never will. I need someone to bring me food and to care for me. I forget how much I can achieve on a good day, because when I’m that ill and exhausted I become depressed. It seems as though my health is going backwards and slipping from my fingers, and that I will never be out of bed or independent again. My life is no longer my own, as I am unable to control it. I end up crying, begging my husband to come home and look after me, and worrying that I am a poor excuse for a wife – meaning that after a hard day’s work my husband still has to walk the dog, do the shopping, and get himself a meal. Little happens in our household unless he does it, and that’s just not fair!

I am writing this to remind myself that good days do still happen. That I have so many achievements recently; singing Handel’s Messiah with my choir, organising an arts display space, running the Pylon Appreciation Society, and even just little things such as getting a few bits from the supermarket. I need to find a way to hold on to these memories on a day when they would be impossible.

On my bad days I moan on social networks such as Twitter, and I am lucky enough to have friends who are hugely supportive, rather than being scared off.

But it’s all very well being introspective. I need to learn new coping techniques. I need to hear how other people get through their worst days. So it’s over to you. How do you manage when you’re having a flare up or relapse, or when everything gets on top of you? How can I stop the feeling that I am losing control of my life?

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9 Responses to "Two versions of me"

I use a diary, but not in the sense of writing down my innermost feelings or even in the sense of trying to back up a DLA application by logging every fall.

It’s a text file on the computer. Constantly updated To Do list at the bottom with Have Done items getting entered in above it and a new heading for each day.

The way I see it, when I’m struggling, all sorts of things count as positive Have Done items including taking proper care of my husband’s wife. Remembered to eat lunch? That’s a good thing, and instead of “oh god, it took me an hour to make a sandwich, gah,” its “hey, I managed to have a sandwich even though it took me an hour!” Too tired to do anything except nap all afternoon? “Sensibly had a nap so that I would be able to sit up for dinner.” Phoning a friend for a chat is taking responsibility for my mental health and avoiding social isolation. Doing washing up and having to stop after a few cups is still more washing up than would have done itself.

It’s sickeningly Pollyanna and yes, sometimes feels faintly ridiculous but it seems to work well for me.

Thanks Mary – that sounds similar to what my friend Kake described and I think my response is similar. I think I ought to write down acheivements, even if they are just “fed the dog”, so that I can see that on every day I do manage *something*, and that a few days after a bad day I’m back coping again. Perhaps that way, next time things seem insurmountable, I can look back and see that they do get better again each time.

I write down the things I manage to accomplish, then I can look back at them when I’m feeling as though I never get anything done. I do this in a private community on Dreamwidth, since that lets me tag and text-search things. It’s private because then I don’t have to worry about feeling accountable to other people, and as long as the notes make sense to me I don’t have to worry about explaining them.

Here’s today’s:

* Switched Castle pubs to Metro Professionals.
* Did lots of photo sorting-out.
* Did an RGL writeup (Browns of Brockley).
* Added a load of stuff to the CGC.

It’s mostly admin stuff really, but it needed doing. I did not wash up, nor did I cook (I had leftovers from yesterday’s cooking) — if I had, I’d have written that down too. Examples from other recent days (not all the same day):

* Slept most of the day, failed to do anything much useful.
* Went for cocktails and Mexican food and cider with [person] and [person].
* Packet risotto for dinner (bob at work late).
* Made Chinese food for dinner.
* Did some washing-up and some of bob’s laundry.
* Replied to [person]’s email.

Thank you, that sounds like a sensible thing to do. Perhaps I should keep a diary – a private one – which logs what I have achieved so that I can see I have achieved *something* every day.

I’m not sure how to make myself believe that I will cope again, when I’m having a bad day. Perhaps being able to look over a diary and see that even on my worst days I did something – even if it’s just “answered the door to a charity collector” or “fed the dog” – will make me realise that I am not as useless as I fear.

The worst thing is that on bad days I find it hard to remember HOW I cope on good days, HOW I can manage to do things, and it feels impossible, like I can never again conceive of driving to the doctor’s or walking the dog. Today I walked past the chemist to a quiz night; the other day walking that distance would have been physically impossible, and I began to fear that I would never again be able to walk as far as the chemist on my own. Mike was having to go and collect meds for me. It’s hard to remember how it feels to be able to do something, when I’m having a bad day and can’t conceive of those activities at that time.

Anyway, this is a long winded way of saying thank you for your comment. It was very helpful.

Just recently I’ve learned to realise that the small things count too…I never thought they did.

If I get dressed, put some laundry in the machine then do nothing else all day, I no longer beat myself up about it. I used to stress about it, but now I say *go me, I sorted some laundry, yay*

On the days where I don’t even manage to get dressed & I lie on the sofa all day…well I’m still struggling with that, though lately I’m feeling much less guilty, so I’m getting there…soon I hope I can convince myself that its fine (because logically IT IS fine, my body needs to rest… there’s nothing wrong with that)

Another thing that has helped me emotionally was recently getting some equipment, including my first ever wheelchair. I think everyone was expecting me to be upset about it, but no. Its SO enabling! I can go shopping with my daughter for a whole day (she pushed me)…we went out for lunch. It was ace! I got a hot water dispenser (no more terrifying myself & everyone else trying to cope with a kettle)…just thinking about all the little things that I CAN do now thanks to these (and other) things makes me really happy….when I think of the years I spent mostly housebound and hardly able to do anything. Mentally, I feel so much better the last 6 months or so…all due to the help and support of my new Occupational Therapist.

Oh I’ve waffled way too much and probably not made much sense. sorry.

But anyway, I wish you well Flash and hope you get some good advice 🙂

Thank you! I agree a wheelchair is enabling, even if it signifies a degradation in condition. Years ago I wrote this for BBC Ouch just after I got my first wheelchair: http://www.bbc.co.uk/ouch/opinion/that_disability_get_it_moment.shtml

But although I can accept aids will help me, on days when there is nothing to make my life easier I do struggle with it. I think I need to write on my good days so I can look back over it on bad days and remind myself that my struggle is not forever.

Thank you so much for commenting.

A reply from someone who wanted to be anonymous, but who wanted to share their reply so that other people can benefit:

On good days I make mental notes, the things I’ve done, and the achievements. So that I know that I can still do things, just maybe not all the time. There is a catch there though. Too often I find myself using this against me, and telling myself “look you could do this yesterday, why can’t you now?” Even on good days I try to remind myself I have impairments, to save myself from pushing too hard and damaging myself. It’s odd the places those things come from, like the friend I’d not seen in a while stopping the conversation and asking if she just saw my shoulder come out of it’s socket, or if she’s seeing things.

On a bad day, I try to focus on goals, reaching for the goal. Try to push away the pain and the leaden feeling. Push away the things I haven’t done and try not to think about the things those around me have done for me. What I have done, is this, and now my reward is resting (and/or nap) and painkillers and food. Other people have already said, making notes of what you have done, to remind yourself there’s more than just the crap. I’m not so good at this, because I can’t write more than a few words at a time nowadays. Again though, it’s a thing to be careful for, so you don’t end up using it against yourself. I don’t count the bad days, that way lies madness, I think.

The worse days, oddly, feel somehow freeing. They’re the days when I can’t dismiss my own thoughts that I’m just being useless, and they prove in my own mind that this is real and it’s a force to be reckoned with. Then, just for a little bit, I let go and let people help with things I would refuse at least half the time even on a bad day. Letting go, giving up. The fight is over for just a bit. When I can’t lift my own weight and someone cares enough to spend the time scraping me off the floor, and checking me over to see if I’ve damaged myself enough to warrant a visit to hospital, or I’m just going to have some interesting bruises and possibly an embarrassing visit to a physio department to replace whatever piece of equipment I landed on; that’s love.

I guess though, I don’t know how I cope. I just keep on keeping on.
It’s been so long. More than a decade

Admitting to myself that using mobility aids, a stick, a crutch, a wheelchair. It was a huge step and a huge help, and a weight lifted off me. Even simple things in this still come now, like admitting that sometimes I need two crutches whilst others I need one. The one thing I would say that helped me more than anything is meeting other people with disabilities. People who said things and just rang so clear and familiar. Knowing you’re not alone. Knowing you’re not alone is one thing I hold above all else – I keep my phone by the bed so that on the days when I’m lying quiet and alone I can call someone and have a natter. Sure, I might not be able to string a sentence together without stopping halfway through to make sure it’s still heading the right direction, but the right person on the other end means it’s not a thing that makes for awkwardness.

In a safe space, it’s ok to let impairments show, and ask for help with them. I still have problems with this publicly. Amongst loved ones, stopping doing things that hide them is still sometimes scary for how they react.

Take care.

hi there- I’m a fellow bendy : )

I think my luck was that I’d never been all that ‘achievement’ orientated-
I didnt strive to ‘achieve’, it was always more “I do something cause I want to or have to” – and the doing itself and the trying to do it as well as I can- and the enjoyment or ‘sense of achievement of/in doing’ (even if I didnt get the result/didnt achieve what I ‘should have’)- was more important than the actual outcome/achievement.

I feel this made it easier for me to deal with no longer being able to do as/when/what I wanted/should -and do a sort of “mid stream shifting of goals”- which could easiER (easy -nope ; ) ) lead to a sense of ‘achievement’
like I’d go in the garden to do some work, but pain or fatigue or dizziness wouldn’t let me. so I’d sit, relax and watch (little little things like ladybirds/spiders doing their thing etc etc) and sort of ‘just being part of the garden and enjoying it’- and thereby ‘achieving’ to maybe hear/see/feel/learn something new, ‘achieve’ relaxation (which could give me the energy/ability to maybe again do 5 mins of work) and…

; ) achieve to not get annoyed/disheartened by not being able to achieve (like pruning that bush that badly needs it etc etc)

and to me it seems that this ‘not trying to achieve but just trying to do whatever/how much/little at a specific moment I can do’- a kind of ‘not fighting things but going with the flow’ over the years has really helped me to become much more able again
these days it’s a bit like “as long as I dont try to function like a normal…I mostly actually function quite normally” ; )

these days I even try (of course I dont always achieve it..). to ‘enjoy’ my bad days- instead of thinking “oh no, I &^%$£ cant do anything today…. and I’d planned…” I’ll try to think “right, I think I’ll have a lazy day, enjoy a day in bed with book, enjoy the luxury of doing nothing” (as if I had the choice, rather than it being forced on me)

but… my bad days aren’t nowhere near as plentiful as they once were… in the throes of chronic fatigue (which for me was harder to deal with than my chronic pain )… when you might only have 1/2 a day a week where you feel up to/can do something… trying to get ‘enjoyment’ out of the never seeming to end ‘lazy days’… is of course another matter

btw my chronic fatigue disappeared as ‘slowly creeping’ as it had appeared- lasted some 5 yrs in all I’d say- I still get easily fatigued but I sleep a ‘normal’ 9hrs/night, wake up awake (what a wonderful feeling!) though due to POTS not exactly ‘raring to go’ ; ))) and will only need a daytime nap or more night time sleep if I’ve done too much for some days consecutively

ooops- more ‘esotheric’ thoughts lol – basically I also think there is no such thing as “being in control of your life”- we love to think so as it is less scary to think that- but life always throws curveballs, curveballs we dont stand a chance to do anything about –
the only things we can control is how we think, act, react to what life throws at us
I really find the philosophy of the famous part of the serenity prayer helpful (although I’m not religious in the conventional way):
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

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