Saturday, 30 June 2012

Spasmic fantastic.

For the past month my right had has been a fist, whilst this was not fun I can live with that, thumbs can be used as hooks and pointers - if you're lucky you can slot in things like cutlery and pens. Far far more disruptive has been the full body spasms that have pulled me into positions far more usual for contortionists or gymnasts than tired and pained teens. It's been rather playfully termed in our house doing my "gymspastics".

Twisted limbs, joints about to dislocate, back arches, stomach pulls me forward, legs assume the "smear test" position, an unsupportive and strangled neck, eyes that wont open, lips that wont move, jaws that lock and teeth that bite into lips cheeks and tongue. Communication is strange garbled strangled words,  subdo-signing, blinking and strained eye movements.
Well, what is it that's happening?? What can be done to help? Answer who knows. It appears to be some sort of dystonia, this may be to do witth my CRPS it may be something new. So after 3 weeks of increasing baclofen and diazepam i found myselfvon Saturday morning in a hospital bed on AMU having arrived at A&E at 10.30 Friday night 1.5 hours with no spasm and having around three hours of light sleep

I wrote that early hours of Saturday morning It's now Monday night running up to 11pm. I've been turfed to another ward as space was needed, I feel distinctly less safe here - staffing levels are lower and the nurse on tonight is pretty shirty. i can feel anxiety creeping ever higher. Visiting times are shorter too. On my bay is 5 elderly ladies and me - none look close to death but none particularly healthy.

 In other fantastic news both my pain Dr who is the hospital's main crps man and the neurologist are on annual leav which in short means no one has any idea what to do with me. The medication levels I'm on to reduce severity of spasms is not safe at home but I definitely would not be safe at home if they reduced it as the spasms are still intense. As the ward staff noticed last night when they tried not giving me any diazepam* it was a spectacular spasm but with a caring nurse and the one emergency dose I had prescribed we organised me onto a comfortable enough position so I could sleep - but still in spasm.

 I wrote out a note for the staff yesterday nice and patronising like the ones they write about the patients. It's attatched to the blog somewhere Today is spasmed still. Mum was here to help. No idea what they're planning on doing with me. Pain is high high high.

 *my drs are anxious about the amount of meds I'm taking and the diazepam is at the "we're a little concerned about this" doseage. On Saturday morning they put a 2 day review on it which to any sane person means review Monday morning but apparently in Dr speak means review sunday night at 10pm where there's not a Dr to be seen. I'm now on a 1 day review which probably means they won't be giving me a dose in the morning like theyre supposed to until a doctor turns up.

Friday, 9 March 2012

Thoughts in pain.

Some days pain consumes me - it is my entire being. Even when I take my emergency pain medication (fairly heavy duty opiates) it's still my main thought, there is little to nothing else. Even when  my attention switches to something other than pain it doesn't happen spontaneously I have to really deliberately focus on something, even the smallest thing takes a lot of energy to focus on enough to actually do it; whether that is watching the TV, changing clothes, eating (which is difficult enough anyway) or finding a somewhat comfortable position. When I'm in that state sleep is still not an escape from pain, assuming I manage to fall asleep at all, I feel the pain in my sleep. Pain permeates throughout all of me. The pain in my sleep feels much worse than when I am awake, a testament perhaps to my brain's ability push aside & hide the full extent of my pain, it is scary - more than scary. When it happens I usually wake up crying out and too afraid to go back to sleep in case it happens again. Sleep used to be a refuge, the only time when pain was not a problem, but now it's something to be feared and to worry over every night.

Pain changes your thought patterns, it reduces your ability to think logically, it can stop you thinking of anything but pain at all. Right now for me it feels like swimming in a pool full of treacle; it's slow, it's hard work, it uses a lot of energy and there's no way I'm going to get to the edge right. It's taking me a long time to work out what I want to say, a long time to work out how to phrase it and an even longer time to actually sort out the mechanics of speech (and typing) then once I actually start talking I might find myself saying "umbrella" instead of "cup" because someone just walked past carrying an umbrella. Sometimes I just can't think at all. When I can't think I start to panic, some might think it's a strange reaction  but really imagine you're trying to reach for something but neither of your arms will move in fact imagine that they're not there at all and this is all a surprise. Suddenly your arms are gone and you can't do anything; wouldn't you panic? Well, there in my head there are no thoughts no movement of the arms of my brain I can't reach the information I need at all. And this starts the panic, I can't communicate anything, can't communicate what's wrong or how people can help. I'm locked inside my own head with everything I know just out of reach behind an impenetrable mud wall. So yes I panic, sometimes just rapid breathing other times it's huge panic attacks that leave me curled up in a ball until it recedes and then flat on my back for the next 3 or 4 days.

In these minutes, hours and days I lose myself. I can't find who I am, I don't know what I like, I don't know what I want to do, what I want to eat, if I need the loo, I lose everything. I think this is the most terrifying thing. All because of the effect pain has on my brain; on my mind. Pain is nasty, pain is all consuming, pain is punishing it pushes you to the limit and yet you continue on. You fight; you find yourself again; you try to live. Then you do it all again.

Wednesday, 1 February 2012

The Toddler on My Hip - an Explanation of Life With a Chronic Illness or Disability.


Having a chronic illness or indeed any other disease or disorder that affects your life is a lot like having a toddler attached to your hip - and a bad tempered one at that.

You’re just going along, happily living your life and then bam congratulations you have Chronic Pain/CRPS/ME/Fibromyalgia/Lupus/Bipolar Disorder/any other relevant thing and the toddler that is Chronic Pain attaches itself to your hip. This toddler (we shall call him Henry because “the toddler” doesn’t sound right) just like any toddler needs to be fed, you need to make sure he has plenty to drink, you need to need to check if he’s filled his nappy.
If you forget to feed him, Henry will cry and become grumpier than usual and throw a tantrum because his stomach aches, Henry can’t tell you he’s hungry, he’s just a toddler he doesn’t know how. If you don’t give Henry a drink when he is thirsty he’ll cry and get more grumpy than normal, and he’ll throw a tantrum because he’s throat is dry and he’s getting a headache. Henry can’t tell you he’s thirsty, he’s just a toddler he doesn’t know how. Henry wears nappies. He doesn’t have control over is bowel and bladder, he just goes when he feels the need. You have to check if he needs is nappy changed. Otherwise he’ll cry and get more grumpy than normal, and he’ll throw a tantrum because his bum is sore.  He can’t tell you he needs his nappy changing, he’s just a toddler. 

Are you seeing where I’m going with this? You are solely responsible for the care of Henry. You have no time to adjust; once the child is given to you, you have to look after him from that moment on. There’s no going back. You didn’t ask for him, you didn’t even know you were going to get him. One minute you’re normal, healthy, young, free, single, you have endless possibilities - the next you have a child constantly weighting you down. The child is yours and you have to deal with it. Henry (or what ever your child’s name is) is attached to your hip swinging on it from that moment on. Everyday you now have to carry around this temperamental child who swings around on your body constantly pulling you off balance. Constantly forcing you to re-adjust.

So you feed him, you give him drinks, make sure his nappy is never dirty for too long. Anything to stop him from getting upset. Because when Henry gets upset he makes life hell. He kicks up a storm in these tantrums. His arms and legs flailing everywhere. All the while still hanging from your hip; the bruises and muscle damage you receive from it is just collateral, Henry doesn’t care he just wants his own way.

But sometimes, sometimes Henry gets upset for no reason at all. They’re the worst tantrums. He hits twice as hard, and is resistant to everything you do. These ones you just have to sit it out and hope the damage isn’t too great.
So when you've picked yourself up from the tantrum (something which is incredibly difficult to do) you have to brace yourself for what happens next. It happens with all toddlers - growing. Yes it grows, as if being lumbered with a toddler to carry around wasn’t enough the toddler grows. The growth might be steady or he might shoot up 6 inches in the space of a month. You never know. He grows bigger and bigger and stronger, never relinquishing is hold on your hip swinging all the time. Into a child, a teen and eventually an adult. There’s nothing you can do about it. This is what happens over time. Things which are living grow.
Except the differences is, with most toddlers , when they grow they become more emotionally mature, less volatile. They learn how to handle themselves. Not yours. He’ll still throw a tantrum at every opportunity.  And he still needs you feed him and give him drinks and make sure he’s toileted properly. He’s just bigger, heavier, more clever - more cunning. Oh and brings friends round to play swinging off you too.

But yes, Henry is clever. He knows what you’re doing, he knows your weaknesses, he knows what’s important to you; he knows everything you know. And Henry, Henry is vindictive just when you have something important or exciting or something you really want to do coming up he’ll fly off the handle and force you to abandon (or at least adapt) your plans.
Then Henry gets a girlfriend. And they get married. But instead of moving out to a home of their own Henry’s wife (lets call her Harriet) moves in with you. You, of course get no say in this. If you openly disagreed Henry would throw yet another tantrum. She attaches herself to you too. And all of a sudden you’re back at square one. You were just about coping with one adult bodied toddler but now you have two to look after. Things get harder. You have less energy. Less time to do anything, you just have to cope.  You have no time to adjust; once Henry moves his woman in, you have to look after them both from that moment on. There’s no going back. The woman is yours too and you have to deal with it. Harriet is also attached to your hip swinging on it from that moment on. Everyday you now have to carry around this pair of temperamental adults who swings around on your body constantly pulling you off balance. Constantly forcing you to re-adjust.

They have children. The cycle continues, until just about the whole of your body is completely covered in these toddler brained people. You’ve long since stopped trying to look after yourself, your only focus is to keep your “children” under control. Henry is still the biggest. Still the most volatile. He can still do you the most damage, but the others take their toll too.
It’s hard work. And it just keeps getting harder. But it’s not always so simple, because Henry, his friends and his family are part of you, albeit a part of you that you can’t control however much you fight to. Henry is always going to do what he wants.
Eventually you have to choose between nannying him constantly and living a semblance of a normal life. You have to choose do you tiptoe around his tantrums and become dependant on others for absolutely everything or do you do what you can and ask when for help when you need it. Yes it’ll be hard, yes you’ll still need to see to Henry’s basic needs but by ignoring hi the rest of the time you get some of your life back.
The first few weeks and months are the hardest, Henry will kick up a right fuss - but he’ll learn.  Eventually he stops screaming - realising it’ll get him no where, well that or you learn to block it out. It gets easier.
Henry, he’s still on your hip - he’ll probably be there for a long time yet, you just learn to handle him. It takes time to get a hang of and a good teacher is essential, but you can get your life back.

Thankyou for reading this - if you want to know more please contact me or read these:

The Spoon Theory - By Christine Miserandino. This essay explains what it’s like to live with severely limited energy reserves. Refer to this if you notice me saying things like “i’m out of spoons” or “I can’t do that I haven’t got enough spoons left” 
The Fork Theory - By Sue Marsh. This one tries to give the reader some understanding of what it is to be in pain constantly.
Your Boyfriend Doesn’t Have Ebola Probably - By Hyperbole and a Half. 

Hello Welfare Reform Bill induced anxiety

So this blog has been created as a distraction, trying to escape the panic that is being brought up by watching the House of Commons(HoC) Parliamentary debate on the Welfare Reform Bill (WRB).

Why am I so terrified? Well that's because they government are intent on systematically destroying the disability benefits that I may one day soon be forced to rely on. So far I am supported by my parents, child benefit (until the age of 19 same as someone in full time education) and a small amount of DLA at the wrong level (low rate care (LRC) & low rate mobility (LRM) which should be at middle and high rates respectively - but that's another story) - but one day soon, perhaps when I am 19, perhaps if I am no longer able to go to college I will have no choice to apply for ESA.
I have no NI (national insurance) and perhaps could be one of those young people who if the government loses their vote and the HoC keeps the Lords (HoL) amendment would have presumed NI contributions. I do hope to be able to work one day but the foreseeable future I have no chance, I barely manage 7 hours a week at college!
If (yes that's if) I got ESA I might be put in the support group - on my own assessment and that of my father (a benefits advise worker) I should go into the support group, however I know the system and I know ATOS medicals - the personnel who run the WCA (work capability assessments) are on the whole unscrupuless, they just don't care. And the WCA themselves are not fit for purpose a tick box system is not appropriate for complex conditions which so often effect people.

The change form DLA to PIP will be horrific for me too. Not only the anxiety in changing over but the difference in descriptors, the horrible assessments, I have had 3 face to face DLA assessments for as many claims (yes they DO happen) with ATOS doctors already I know what I am talking about. Each doctor has hurt me and lied on their forms about anything from how long they spent with me, to the level of ability I had and the level ability I showed them, or what aids and appliances I have and how much pain I am in. They judged my condition incorrectly, one even decided that it was entirely psychological which was definitely not her job (they are payed to comment on my level of impairment not diagnosis), they caused severe anxiety  and NONE understood the bundle of complexity and contradictions that is Complex Regional Pain Syndrome. If these face to face assessments must take place then why not with our own GPs, Consultants, Physiotherapists or Occupational Therapists who will be much more familiar with us, our conditions and much better qualified t assess us than a random doctor who sees you for between 20 minutes and 2 1/2 (in my experience).

I am still anxiety filled and waiting for the speaker to collate and declare the results of amendment 15  which continues presumed NI for severely disabled young people allowing them to get contributory rate ESA.

For now, Becca