Now I have worked out I can just post about this, that and the cat I feel less afraid. I can just come here write stuff, hit publish and off I go again. I knew this already really but I have a tendency to self limiting behaviours.
Anyone who has been hanging around here for a while will know, I have quite a few self-limiting behaviours, I use this termininology because my sister is a hypnotherapist. She taught me the phrase. I like it. Although I don't much like the self-limiting behaviours. Me being me I can't remember the whole conversation but I just thought I had lots of phobias. No I am not neurotic honestly I am not, in fact I am pretty level headed. This comes from having had a very very misspent youth. The only thing is I am not very conventional. I sometimes look at other women my age and think, is that what I am supposed to wear?
Anyway back to self-limiting behaviours, which I just used to call phobias. This is the bit of the conversation I cannot remember. Although it may have gone like this. If you are afraid of spiders for example, that is a phobia. A simple phobia. But if like me you have a driving phobia that is a self-limiting behaviour not a simple phobia. Please feel free to correct me. I will drive. But I am very very specific about the whys and the wherefores.
I will drive locally, but only on back roads. I won't drive on dual carriageways, motorways, large roundabouts. I no longer care what people think about this I spent too many years worrying about that. My sister thinks lots of small things related to being in cars and stuff happening and a couple of very big things that happened in cars have contributed to my self-limiting behaviours.
One day I may feel up to explaining the big thing that happened in the car but right now I don't feel compelled to do so. Perhaps mentioning 'The Big Thing' here, which for me is a big thing in itself may help me to overcome this self limiting behaviour?
Now if this were me reading this I would be thinking - so if your sister is a hypnotherapist surely she could just hypnotize you out of your 'phobias. I write phobias because frankly continually typing self limiting behaviours is tiresome. The thing is despite the fact that she is a successful hynotherapist. (I would really appreciate it if you have read this post and just want to comment I think all that hypnotherapy stuff is a load of shite, because actually I will take it personally, I don't mind anyone having a pop at me but to my kith and kin, be very very aware I go crazy. I am a Leo and Leo's are profoundly protective of their loved one's) Anyhow back on topic. Because she is my sister when she has tried to hynotize me it just does not work. Because I can't stop laughing. She is my older sister and as such has always bossed me about. Somewhere in the back of my mind the minute she tries I just rebel and laugh and laugh and laugh.
So she gets really annoyed and I still can't stop laughing. I cannot afford to see another hypnotherapist and so am left with my 'self limiting behaviour'.
On the whole my driving phobia has little impact on my life. I potter about in places that are familiar and if we need to go further afield OH drives. Daughter and son drive also now so when I can stop bossing them about and telling what to do in the car I am sure they will drive me further afield. Son has devised a very good coping tactic for when we approach large roundabouts, he insists I wear a hat and says 'mum, time to pull your hat over your eyes'. So if you ever see a very short, dark haired woman in a car sat beside an exasperated good looking 18year old male with her hat pulled over her eyes it will be me. You can say to your OH 'hey I have just seen Achelois from The Tensile Times!'
nb - It is actual fact that Ehlers Danlos Syndrome shares the same gene as the phobia gene. So there you go, aren't I lucky. I think I got that fact right but google it for proper citation.
So thats me and my self limiting behaviour. There are more but I rather feel that is enough to be going on with.
Tuesday, 29 March 2011
Saturday, 19 March 2011
I wonder....
I have been up to not a lot. My latest favourite place is Pets at Home - how sad is that. The access is good. Everything needed for the animals is there. OH pays for it all if we go there which is a bonus. Our new rescued staffie has his boots under the table now and all his lovely idiosyncrasies are popping up daily. Umm chewing boots and shoes being one of them. Its great that he is finding his personality I think!!
I am 46 and have the biggest spot in the world on my chin, what the heck is all that about. New laptop*a present, means I have the luxury of lying in bed to blog which is great, unfortunately OH's snoring is not. Why do men snore so bloody loudly.
I am suffering from chronic sulking as all those attending the Australian Blogging Conference are having a fantastic time. Don't get me wrong I am pleased they are having a great time, just wish I was also.
Having upgraded Internet thingy whatsit am getting really very pissed off that I simply cannot maintain connectivity to even post this. So will contact them on Monday to patiently ask why. I say patiently because I don't feel very patient about it. At all. So I will have to pretend to be patient because I don't want to take out my frustration on someone who probably earns not a lot and I doubt its their fault. We can't get clever packages around these parts due to our location. I suppose if we lived in a big city I would get better. Sometimes I wonder whether we should move in fact. I have always lived rurally but wonder latterly if in fact my life would be easier if we didn't. Imagine I could get a mobility scooter, open the door and off I could go. I don't like crowds and such so would have to get used to that but I do wonder about it.
I wonder about a lot of things these days.
(Please excuse my poor grammar, lack of interesting content, sparse vocabulary, lack of wit, the lot, no excuse really just please put this down as a post of little interest).
Wednesday, 9 March 2011
You know you want to.....
or alternatively help her via link below to save her blushes (A link to Veronica's mum, grandmother to Veronica's two beautiful children)
I have been reading Veronica's blog for quite a little while now. She is a young woman who struggles daily to battle severe Ehlers Danlos. She is a wonderful mother to two beautiful children both of whom she is in the middle of obtaining a diagnosis on the Autistic Spectrum. I know it will have been really really hard for her to ask for help. But she is the type of young woman who once she has made a comitment would never dream of letting anyone down. Because she has comitted herself to helping organise the Australian Blogger's Conference, she will be determined not to let all those other bloggers down. Fate, in the form of a vicious unexpected frost, destroyed her crops and nasty nasty people who stole her ducklings mean she is left with head in hands, struggling. Not knowing which way to turn.
I felt bad because I could only help her out a tiny embarrasingly small amount that I almost didn't because it was so small. But I got to thinking that if as many bloggers as possible could help out a tiny bit then all those tiny bits might add up to a bigger bit.
So if you have a tiny bit to spare, please help her out, so that all the other bloggers (some of whom will be like me and find the blogosphere a place where I have found friends when I really needed them) to meet up. Then perhaps we can dispel the myth that the only thing the Internet is good for is shopping and porn.
I know I don't have many followers but you may have more so please if you can, pass this one on, via Twitter, blogging or any other means you see fit.
Even if you cannot afford a tinsy bit passing on may mean someone else may have a little to help out a young woman who is at the end of her tether.
Thank you.
Saturday, 5 March 2011
Slithering....
The latter part of this week I have had posts in my head.
Distracted by Twitter.
I rarely properly take to my bed. Don't get me wrong I spend a lot of time in bed. Interrupted sleep. Pain, dislocations, subluxations are normal. The cats at all times understanding. The dog so new to our house, rescued to our home, understands already. We adore each other.
I nearly called the doctor. How does one explain, I feel so ill. Without any sign of flu or virus. Can't eat too nauseous. Arms, legs, brain turned to jelly. Made it to surgery to get repeat prescriptions, without the required 48 hours notice. Receptionist who has known me for many years said S..... you really look unwell. Please see a doctor. A silent tear slid down my cheek... I don't know why this happens I just know that it means something is up. Silent tears mean I feel too ill to explain I need to go home to get back in my bed. Whenever something is wrong I know because this tear thing happens. It means I am sick. How can one explain to a kindly receptionist, I just feel too ill, I need to go. I smile a little, kindness means the tear slid in a solitary drop from my chin to form a damp mark on my scarf. I promise her that if I don't feel better I will see the doctor next next week, prescriptions in hand, I slip away. Feeling as though I am disappearing from myself.
Arrive at pharmacy, where I am also known well. Ushered to seat, scripts rushed through. No blood in my cheeks aware that the pallor, causes concern. Normally I attempt small talk, not that day. Which I think was yesterday. No one noticed that my soft clothes under my coat, hat despite the sunshine were not day clothes. If they did they were too polite to say, get dressed. Nearly a sad bag lady.
Get home, slither to bed, wishing someone would change the sheets, the duvet cover... my grandmother would have done this. Understanding that I need the cool touch of a freshly laundered bed set. I feel close to her, perhaps this is dying. Laptop at end of bed. Do not search, I think I am dying. Not in a dramatic way more a sliding away. No matter, I'll sleep again. Family drift in and out.
My heart flutters more, when i wake it does this thing that feels like its moving. thumply, thumply, shudder, My blood pressure low.
I berate myself for not addressing medical stuff that needs to be looked at. For putting my family through this shit. A person this week who has become a bed, moulded into a thing so floppy its not me. But it is me.
Forcing myself to drink slimfast drinks, not for dieting reasons. Chewing, is not an option against the forces of nausea. I swallow as husbands looks on, concerned. Took me over two hours today to muster up enough energy to get up. Husband seemed relieved. She is up. I have that thing again where my arms won't work. Hang limply by my sides. Bend my head sitting at kitchen table, waiting for tea to cool so much its beyond tepid, knowing that hands won't hold the contents. Its good that I am short. Tipping mug into mouth I wonder how he still loves me. Wives like me don't give much back. I know I am giving less and less of myself. Myself lost somewhere in pain and this affliction.
I won, I did not google mitral valve, or I think I am fading into somewhere else, my eyes are too tired to read anyhow, apart from Twitter and blogs I am familiar with. I am not a hypochondriac. This is ehlers danlos. This is autonomic dysfunction. This is me.
I will come out the other side with promises to myself to get referrals to the City. Or will I just do what I normally do and accept that this is how it is. In reality, I take the right medications, drink liquids, more salt, climb back to reality. It won't be normal because normal is pretty abnormal. But the not normal is better than sliding into oblivion, losing days of my life.
I wrote this post because I read Michelle's last post on processing over at bob's place (see last post to link to her blog). I was brave I told the truth. My mind is mush so this post is that. The mush in my mind caused by an autonomic crises? Perhaps when this happens I am supposed to be in hospital, on IV fluids, then leave all fixed. I read in blogs from the US that this is quite normal for EDS bendies like me. But here in the UK it seems there are no guidelines. It went well in the end. Because I lived. I just lived in my bed. Sweating cold sweat, that to me smelt funny. OH said it didn't but I think he was being kind. Body temperature too low. I rarely register a temperature as just above normal is high for me. What caused this crash. I hated myself for giving in. Texting husband who was downstairs that I needed the loo but arms and legs weren't working. Its nearly over. I got dressed, in soft clothes. Nothing over the head, arms still won't raise. Soft clothes help the transition from bed to life. Soft because the pressure of clothes on skin, too soon for that.
I couldn't play the pretend game this week. You know the one. I'm fine, fixed smile, pinpoint pupils, very well thank you.
So I made it downstairs. Yippee. Lucky me. But now I have told the truth, I'll log off from this laptop and go to bed. Listen to OH snore gently. Then switch on new laptop, waiting at the bottom of the bed. My new friend. My comfort. My link to the outside world. Real time friends, are sliding away, their lives are busy. I understand EDS is boring. I will want to see how Veronica is doing @sleepless nights, (see blogroll) to find out how she is, someone stole her ducklings - bastards. Twitter people who do not know me welcome me. A world where EDS is understood - the blogosphere. Without this contact with the outside world EDS would swallow me up and I could disappear. I'll read that others do complete proper things, art, crotchet, knitting, campaigning for dla, mother's dreams...... It really really helps. Because this summer, I will achieve something. The inspiration is there, a world of other people's lives. Enriching mine. I lost my intellect somewhere in Ehlers Danlos land. But little by little, this week that felt as though it were a lifetime I learn again that I have inner strength to fight some more.
Looking to small things and not dwelling on the week where I slithered into Ehlers Danlos land. I am thankful for the love of my husband and children (to me they will always be that) my animals who surround me. My life. I lost myself last week, not to self pity, I learnt a long time ago that to dig the self pity hole is futile. I just got lost in Ehlers Danlos land.
Tomorrow is another day and I will persevere. I told the truth. Its a start.
Distracted by Twitter.
I rarely properly take to my bed. Don't get me wrong I spend a lot of time in bed. Interrupted sleep. Pain, dislocations, subluxations are normal. The cats at all times understanding. The dog so new to our house, rescued to our home, understands already. We adore each other.
I nearly called the doctor. How does one explain, I feel so ill. Without any sign of flu or virus. Can't eat too nauseous. Arms, legs, brain turned to jelly. Made it to surgery to get repeat prescriptions, without the required 48 hours notice. Receptionist who has known me for many years said S..... you really look unwell. Please see a doctor. A silent tear slid down my cheek... I don't know why this happens I just know that it means something is up. Silent tears mean I feel too ill to explain I need to go home to get back in my bed. Whenever something is wrong I know because this tear thing happens. It means I am sick. How can one explain to a kindly receptionist, I just feel too ill, I need to go. I smile a little, kindness means the tear slid in a solitary drop from my chin to form a damp mark on my scarf. I promise her that if I don't feel better I will see the doctor next next week, prescriptions in hand, I slip away. Feeling as though I am disappearing from myself.
Arrive at pharmacy, where I am also known well. Ushered to seat, scripts rushed through. No blood in my cheeks aware that the pallor, causes concern. Normally I attempt small talk, not that day. Which I think was yesterday. No one noticed that my soft clothes under my coat, hat despite the sunshine were not day clothes. If they did they were too polite to say, get dressed. Nearly a sad bag lady.
Get home, slither to bed, wishing someone would change the sheets, the duvet cover... my grandmother would have done this. Understanding that I need the cool touch of a freshly laundered bed set. I feel close to her, perhaps this is dying. Laptop at end of bed. Do not search, I think I am dying. Not in a dramatic way more a sliding away. No matter, I'll sleep again. Family drift in and out.
My heart flutters more, when i wake it does this thing that feels like its moving. thumply, thumply, shudder, My blood pressure low.
I berate myself for not addressing medical stuff that needs to be looked at. For putting my family through this shit. A person this week who has become a bed, moulded into a thing so floppy its not me. But it is me.
Forcing myself to drink slimfast drinks, not for dieting reasons. Chewing, is not an option against the forces of nausea. I swallow as husbands looks on, concerned. Took me over two hours today to muster up enough energy to get up. Husband seemed relieved. She is up. I have that thing again where my arms won't work. Hang limply by my sides. Bend my head sitting at kitchen table, waiting for tea to cool so much its beyond tepid, knowing that hands won't hold the contents. Its good that I am short. Tipping mug into mouth I wonder how he still loves me. Wives like me don't give much back. I know I am giving less and less of myself. Myself lost somewhere in pain and this affliction.
I won, I did not google mitral valve, or I think I am fading into somewhere else, my eyes are too tired to read anyhow, apart from Twitter and blogs I am familiar with. I am not a hypochondriac. This is ehlers danlos. This is autonomic dysfunction. This is me.
I will come out the other side with promises to myself to get referrals to the City. Or will I just do what I normally do and accept that this is how it is. In reality, I take the right medications, drink liquids, more salt, climb back to reality. It won't be normal because normal is pretty abnormal. But the not normal is better than sliding into oblivion, losing days of my life.
I wrote this post because I read Michelle's last post on processing over at bob's place (see last post to link to her blog). I was brave I told the truth. My mind is mush so this post is that. The mush in my mind caused by an autonomic crises? Perhaps when this happens I am supposed to be in hospital, on IV fluids, then leave all fixed. I read in blogs from the US that this is quite normal for EDS bendies like me. But here in the UK it seems there are no guidelines. It went well in the end. Because I lived. I just lived in my bed. Sweating cold sweat, that to me smelt funny. OH said it didn't but I think he was being kind. Body temperature too low. I rarely register a temperature as just above normal is high for me. What caused this crash. I hated myself for giving in. Texting husband who was downstairs that I needed the loo but arms and legs weren't working. Its nearly over. I got dressed, in soft clothes. Nothing over the head, arms still won't raise. Soft clothes help the transition from bed to life. Soft because the pressure of clothes on skin, too soon for that.
I couldn't play the pretend game this week. You know the one. I'm fine, fixed smile, pinpoint pupils, very well thank you.
So I made it downstairs. Yippee. Lucky me. But now I have told the truth, I'll log off from this laptop and go to bed. Listen to OH snore gently. Then switch on new laptop, waiting at the bottom of the bed. My new friend. My comfort. My link to the outside world. Real time friends, are sliding away, their lives are busy. I understand EDS is boring. I will want to see how Veronica is doing @sleepless nights, (see blogroll) to find out how she is, someone stole her ducklings - bastards. Twitter people who do not know me welcome me. A world where EDS is understood - the blogosphere. Without this contact with the outside world EDS would swallow me up and I could disappear. I'll read that others do complete proper things, art, crotchet, knitting, campaigning for dla, mother's dreams...... It really really helps. Because this summer, I will achieve something. The inspiration is there, a world of other people's lives. Enriching mine. I lost my intellect somewhere in Ehlers Danlos land. But little by little, this week that felt as though it were a lifetime I learn again that I have inner strength to fight some more.
Looking to small things and not dwelling on the week where I slithered into Ehlers Danlos land. I am thankful for the love of my husband and children (to me they will always be that) my animals who surround me. My life. I lost myself last week, not to self pity, I learnt a long time ago that to dig the self pity hole is futile. I just got lost in Ehlers Danlos land.
Tomorrow is another day and I will persevere. I told the truth. Its a start.
Tuesday, 1 March 2011
Michelle is not crazy
Please click on the link to view Michelle's video of what it is like to live with an invisible disability. Michelle is one of my very favourite blogger's. Why - Her sense of humour. Vitality. Wit. Intelligence, there is more but my brain is mushy. Living with Bob - her name for her invisible disability which each day brings forth more challenging symptoms is the place I go when I feel sorry for myself. She reminds me that without humour everything is pants. Michelle gave me permission to link. Its me being lazy as well because it means she gets to wear herself out trying to describe what it is like to have an invisible disability. So much of what she says is just how I feel.
(I promised to send Michelle an email and I have clean forgotten what it was I wanted to say - sorry Michelle)
Why do all the best people live so far away?
I can stretch but not this far
image from yahoo search
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