Before reading this, know that this stuff was quite diffilcult to write about - but also difficult to decide to write about it and share it. In this age of the overshare, I have become a little more reluctant to slap up my life deets at every opportunity. Its not at all that I don't think people should, or that I don't want others to know - it's more about not (as I see it myself) making so much bloody noise about meself, if you get me.
I've had a bit of a turbulent month or so. Hey, December is always hard for me - I flip flop between wanting to see people and wanting my routine back. My normal (these days) low stress, isolated existence is going to be disrupted whether I like it or not. Some of that I look forward to, but at the same time I worry that I will be too tired, get ill, panic, and just generally let people down by not being the person they were used to anymore.
As with most anxious types, one of the ways I try to cope better is by being prepared, more organised. This can help massively or it can lead to unnecessary worry and being overly controlling. Trying to be prepared for all eventualities is exhausting, and damned near impossible but it doesn't stop my daft head from bloody trying to do exactly that.
And the festive season has lots to prepare for - going visiting, gift buying and this year a little break for my daughters birthday just before chrimbo. None of which is a major deal, but the fact they all happen close together, and that it has a date and time to be done - thats where the stressor buttons get pressed. Its all well and good getting by day to day with the freedom of doing however much I can when I can, and having the luxury to shut down a bit when I need to. Set days like Christmas day bother me - it niggles that I might HAVE to be social because its christmas, I guess.
For people who have known me forever - well, ages anyway - the idea of me NOT being social seems bonkers. The old me was Tigger. The new me is distinctly more Eeyore. So I worry that I'll be weird to people. I resort to a sort of impersentation of the old me, a bit cartoonised, but seems to be more accepted by others. It avoids questions or comments - You don't seem yourself, why so moody, you're quiet etc... It kinda makes me even FEEL a bit like old me for a short burst. It always has a kickback one way or another, either emotional wobbles, fatigue or illness. So then I let people down. I was a mess christmas day night, tummy issues, crying jaggs, and a massive plummet into the gloom and fatigue cave. I didn't make it to the Boxing Day family bowling. Not for the first time.
Letting people down - its the thing I know is going to happen, and try hard to avoid by being prepared, and invariably its what I get terribly upset about. I get that most of this emotional upset is driven by me - my attempts to be acceptably Me-like, and then feeling out of my depth, followed by imagining what everyone thinks of me and getting upset about my imaginings. On the right side of my head, I know its all me really and so I should just dial it back or something. On the wrong side of my head is the unlimited propensity to beat on myself and wallow in my own stress juices.
Now earlier this year I scaled back, then stopped my anti depressants completely - I felt like they weren't doing much anyway and if I could do without it would be better for all the other stupidity I have going on healthwise. I was pleased and felt fine about not taking the meds. It felt like a good achievement. I think because despite knowing its an illness, I still feel the stigma of being on medication to feel normal. I totally recognise that stigma, the skewed view we all have of mental illness and medication to control it. I recognise it, but I still want to be able to do without like everyone else.
So I was very reluctant to admit to myself that I probably did need the meds. But I did. I do need them still, and after a few quite black episodes recently, I'm feeling much better having restarted on a low dose.
I wasn't sure about writing all this down - because a voice is telling me its a fail. Big Fat Hairy Fail.
Oddly though its not getting too much attention, I think because I know it isn't really failing. Failing would be to continue to decline, knowing that meds might help. Failing would be to let myself buy into the whole idea that you can decide you don't need the meds and that alone will mean you really don't because its all in your head anyway. Failing would be to lie to myself for the sake of saving face.
So no, I'm not failing just yet. I'm simply staying in control of my life, my health and my medication. I thought about not sharing all this, because, well, it doesn't really impact anyone else I guess. I thought about what would happen if I didn't share, and just got on with my life - you know, making less bloody noise and all that. Nothing. Nothing would happen. Then I thought of all the times I've read stuff from others that has really reassured me that I'm not on my own in all this, that others struggle with the same issues. So really all this noise is just in case someone out there is in the same boat, or might take comfort in the fact that we all get things wrong sometimes, and its better to get back on a good track than continue on a not so good one to save face.
One of my aims for the coming year is to say "sorry" a lot less, and "Thanks for understanding" a bit more. With that in mind, I want to say a big thank you to my family for understanding my limitations and not making me feel bad about missing stuff at chrimbo.
Finally, to all my family and friends, close or distant, I love you ALL the same. (but I love each one of you a little bit more if you are reading this, and if you continue to put up with my noise! )
Thursday 31 December 2015
Wednesday 6 May 2015
A Brave New Life - A tired look at losing some stuff and gaining new stuff...
The New Life...
It wasn't that long ago that all these things were part of my life :
Stand Up Comedy
Improv Comedy
Writing novels
Working a full time Job
Any one on its own could fill a persons time easily, let alone all of them. And at the time I juggled them all without feeling too many stretches and strains at my life force.
Then I started to notice changes - and had a couple of severe crashes which the docs wrote off as depression and anxiety (as is their way) and started long term meds.
I lost focus - it was most noticeable in my writing, which more or less stopped. I didn't enjoy it. Especially not the editing - it was like the text wouldn't quite gel in my head when I read it. I put it down to the anti depressants.
Memory loss - well jokingly I put it down to age or genetic (Mum was famously scatty, Dad has Altzheimers) but this was also scary for me. There is a huge difference between forgetting something which as soon as you realise you forgot it comes back to you clear as day, and searching sometimes quite desperately to remember something you just did and finding absolutely nothing - not a vague recollection - nada. I recall quite clearly doing an improv game called alphabet I think. Each person in the scene needs to start their bit of dialogue with the next letter - it was going great until suddenly I froze - had to actually just not say anything - not because I couldn't think of anything for the letter, I didn't KNOW the next letter. It was ever such a small incident to others. To me I knew it was wrong. Very odd feeling. I started pulling back from improv a little and the fear began to creep in a bit further.
Word tripping (or word salad) - I would be in full flow conversation and a completely different word would come out of my mouth - mid sentence, making me do a double take as if I was hearing someone else. Sometimes they still made sense sometimes not, but always they were NOT the word in my head and just came out of the blue to me. It was funny sometimes. Sometimes not. In my teaching kids would notice, and I'd pretend it was on purpose to see if they were listening.
Co Ordination and Balance - In my youth I used to dance - Ballroom, latin, Disco - I was really good at it and I loved it. I've always had quite good co ordination and balance, but I began to notice more trips, wobbles, dizzy spells, losing my balance. I'd regularly walk into walls. Not head on, no, more like those trolleys at tesco that go to one side...
Gradually I dropped off the things I'd been juggling - the writing, the stand up, the improv, and finally and most drastically, the teaching.
June 2013 I had a massive crash and that was the last day I worked. Haven't worked since. A variety of things now came to the fore - some pretty massive vitamin deficiencies, the Coeliacs disease, and the fatigue. Having tackled the Coeliacs with a change of diet, removing gluten, I felt some changes.
I still have nowhere near conquered the deficiencies and fatigue. That massive, all consuming drained feeling is something I experience every single day.
Now to the new life - Lots of things have gone (see above) - and along with them a lot of the energy draining things and stressors. Also along with them went social things like seeing others on a daily basis. I don't see anyone except Derek, Rob and Edna. Sometimes for weeks or more. I have social contact on facebook. I chat sometimes for a minute or two to people walking their dogs when I'm out with Edna. And I shop. Love to scour the charity shops for bargains.
There are some other new things - sewing, decorating, gardening, cooking. Probably I'd have done these things more before were it not for the other pesky creative stuff taking all my time :D
I sleep a lot. Probably about 12 hrs on average each day. Don't use a lot of energy during the other waking 12 hrs either because if I do, I suffer the next day. My joints ache most of the time and I limp. I feel healthier though, I eat better and I look better. My doctor says that my bloodtests show nothing in particular and I'm sure he thinks I'm a nut, so I've stopped bothering. He wants to let my diet improve and rule out the other stuff before he looks at anything else. This is what its like with Chronic Fatigue and M.E. - Doctors don't know nearly enough about it to pin it down. If they can see another reason for the fatigue and symptoms, that's what they will pick - its the coeliacs, its depression, its a deficiency. Some doctors will identify ME or CFS, others won't. And if they have no idea, then I'm bloody sure I don't know. So, we need more info, people. I read what I can (yep, I blames the tireds!!) and I know enough to know that we don't know nearly enough.
The BIG ASK -
If you are doing nowt on Sunday 17th May at 8pm - Come to the Frog N Bucket and add some coffers to the pot to try and discover more about M.E. and CFS - aside from helping the cause, its a great line up and well worth the money :)
Tickets on sale NOW from http://www.skiddle.com/
I ask myself sometimes if I miss those things - its odd - I recognise that I used to do them, but now I don't. I loved doing them, now I likely wouldn't. I'm scared of the word trips and forgetting what to say, I don't have the drive to get off my butt and do them. I certainly don't have the energy or presence of mind needed for most of them. I love remembering.
I'm oddly content though. Stress in my life is way down - good for my health. I'm managing financially, just. My head is clearer and my heart is full of love for myself and those dear to me.
I still wonder - should there be more in my life?
But I'm a bit tired, so I'll maybe do more another day.
Daisy xxxx
It wasn't that long ago that all these things were part of my life :
Stand Up Comedy
Improv Comedy
Writing novels
Working a full time Job
Any one on its own could fill a persons time easily, let alone all of them. And at the time I juggled them all without feeling too many stretches and strains at my life force.
Then I started to notice changes - and had a couple of severe crashes which the docs wrote off as depression and anxiety (as is their way) and started long term meds.
I lost focus - it was most noticeable in my writing, which more or less stopped. I didn't enjoy it. Especially not the editing - it was like the text wouldn't quite gel in my head when I read it. I put it down to the anti depressants.
Memory loss - well jokingly I put it down to age or genetic (Mum was famously scatty, Dad has Altzheimers) but this was also scary for me. There is a huge difference between forgetting something which as soon as you realise you forgot it comes back to you clear as day, and searching sometimes quite desperately to remember something you just did and finding absolutely nothing - not a vague recollection - nada. I recall quite clearly doing an improv game called alphabet I think. Each person in the scene needs to start their bit of dialogue with the next letter - it was going great until suddenly I froze - had to actually just not say anything - not because I couldn't think of anything for the letter, I didn't KNOW the next letter. It was ever such a small incident to others. To me I knew it was wrong. Very odd feeling. I started pulling back from improv a little and the fear began to creep in a bit further.
Word tripping (or word salad) - I would be in full flow conversation and a completely different word would come out of my mouth - mid sentence, making me do a double take as if I was hearing someone else. Sometimes they still made sense sometimes not, but always they were NOT the word in my head and just came out of the blue to me. It was funny sometimes. Sometimes not. In my teaching kids would notice, and I'd pretend it was on purpose to see if they were listening.
Co Ordination and Balance - In my youth I used to dance - Ballroom, latin, Disco - I was really good at it and I loved it. I've always had quite good co ordination and balance, but I began to notice more trips, wobbles, dizzy spells, losing my balance. I'd regularly walk into walls. Not head on, no, more like those trolleys at tesco that go to one side...
Gradually I dropped off the things I'd been juggling - the writing, the stand up, the improv, and finally and most drastically, the teaching.
June 2013 I had a massive crash and that was the last day I worked. Haven't worked since. A variety of things now came to the fore - some pretty massive vitamin deficiencies, the Coeliacs disease, and the fatigue. Having tackled the Coeliacs with a change of diet, removing gluten, I felt some changes.
I still have nowhere near conquered the deficiencies and fatigue. That massive, all consuming drained feeling is something I experience every single day.
Now to the new life - Lots of things have gone (see above) - and along with them a lot of the energy draining things and stressors. Also along with them went social things like seeing others on a daily basis. I don't see anyone except Derek, Rob and Edna. Sometimes for weeks or more. I have social contact on facebook. I chat sometimes for a minute or two to people walking their dogs when I'm out with Edna. And I shop. Love to scour the charity shops for bargains.
There are some other new things - sewing, decorating, gardening, cooking. Probably I'd have done these things more before were it not for the other pesky creative stuff taking all my time :D
I sleep a lot. Probably about 12 hrs on average each day. Don't use a lot of energy during the other waking 12 hrs either because if I do, I suffer the next day. My joints ache most of the time and I limp. I feel healthier though, I eat better and I look better. My doctor says that my bloodtests show nothing in particular and I'm sure he thinks I'm a nut, so I've stopped bothering. He wants to let my diet improve and rule out the other stuff before he looks at anything else. This is what its like with Chronic Fatigue and M.E. - Doctors don't know nearly enough about it to pin it down. If they can see another reason for the fatigue and symptoms, that's what they will pick - its the coeliacs, its depression, its a deficiency. Some doctors will identify ME or CFS, others won't. And if they have no idea, then I'm bloody sure I don't know. So, we need more info, people. I read what I can (yep, I blames the tireds!!) and I know enough to know that we don't know nearly enough.
The BIG ASK -
If you are doing nowt on Sunday 17th May at 8pm - Come to the Frog N Bucket and add some coffers to the pot to try and discover more about M.E. and CFS - aside from helping the cause, its a great line up and well worth the money :)
Tickets on sale NOW from http://www.skiddle.com/
I ask myself sometimes if I miss those things - its odd - I recognise that I used to do them, but now I don't. I loved doing them, now I likely wouldn't. I'm scared of the word trips and forgetting what to say, I don't have the drive to get off my butt and do them. I certainly don't have the energy or presence of mind needed for most of them. I love remembering.
I'm oddly content though. Stress in my life is way down - good for my health. I'm managing financially, just. My head is clearer and my heart is full of love for myself and those dear to me.
I still wonder - should there be more in my life?
But I'm a bit tired, so I'll maybe do more another day.
Daisy xxxx
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