Therapy dog |
Thursday 30 June 2011
ME Symptom Diary: June 2011
Tuesday 31 May 2011
ME Symptom Diary: May 2011
Sunday, 1 May 2011
Monday, 2 May 2011
Tuesday, 3 May 2011
Wednesday, 4 May 2011
Thursday, 5 May 2011
Friday, 6 May 2011
Saturday, 7 May 2011
Sunday, 8 May 2011
Monday, 9 May 2011
Tuesday, 10 May 2011
Wednesday, 11 May 2011
Thursday, 12 May 2011
Friday, 13 May 2011
Saturday, 14 May 2011
Sunday, 15 May 2011
Monday, 16 May 2011
Tuesday, 17 May 2011
Wednesday, 18 May 2011
Thursday, 19 May 2011
Friday, 20 May 2011
Saturday, 21 May 2011
Sunday, 22 May 2011
Monday, 23 May 2011
Pain in neck increased again. Also very tired and have a sore throat again this morning. Reacted badly to the little activity I did yesterday, sorting stuff.
Tuesday, 24 May 2011
Only walked to the local Post Office and back yesterday, but woke up with the sore throat, feverishness, headache, pain and spasms in leg muscles that normally come after a much longer outing. Also being stressed out by mother’s constant melodrama and attention-seeking behaviour. Today the world was about to end because her hospital transport hadn’t arrived when she was ready. This was accompanied by highly dramatised exclamations of “Oh, I hope he hasn’t forgotten me” and “What am I going to do?”, while quivering her bottom lip and turning on the crocodile tears. Nothing, you say? Poor old dear, you think? She would want you to believe that I'm the one being unreasonable and unkind. NO. She knows what she’s doing. This is everyday. Besides she was ready ages before she needed to be and the lift wasn’t even due to arrive for some considerable time then, so he wasn’t late, so there wasn’t a problem in the first place. Pointed this out to her, but she feigned (became snotty, nose in the air, refused to respond ...) not being able to understand that logic. And jeez, it’s hard to be sympathetic when she disregards, denies and brushes off my illness and is clearly using these relentless melodramatic outbursts to ‘prove’ – at least in her own head – that she is SO much more unwell and important and deserving of sympathy.
Wednesday, 25 May 2011
Woke up with sore throat, exhausted and with pain in neck, back hips and legs as if I’d been on a major outing again and I’d only been as far as the local Post Office again yesterday.
Thursday, 26 May 2011
Bad pain and stiffness everywhere as weather turned to rainy and windy. Hurt my wrist trying to get out of bed. Legs barely work. Headache. Counselling appointment in the afternoon and the walk was difficult – not to mention wet - and was glad to come straight back again. Went straight to bed, exhausted.
Friday, 27 May 2011
Pain in hip and neck mostly, along with general stiffness and aches after outing yesterday, as well as exhausted after waking at 5am. Have been waking earlier and earlier lately because of the light mornings, despite blocking the glass above the door and buying a screen. These only help a little. Had to take some more items to the Post Office and do some shopping in the afternoon. Took the bus there – BIG mistake – and taxi back, but this was still exhausting and caused a lot of pain in my legs.
Saturday, 28 May 2011
Shoulders, back and legs all hurt and knees feel swollen. Arms and hands hurt. Writing hurts. Joints all clicking painfully. Headache. Exhausted. Woke up early. Nausea. Coughing, choking and wheezing with tightness and pain my chest again – this latter several times this week, but particularly bad this morning. Pain in my knees is excruciating. Every time I stand up, I feel overwhelmingly sick and have to lie back down again.
Sunday, 29 May 2011
Hands, neck and knees were worst affected with pain this morning. Bad attack of IBS again today has put me back in bed with a sore stomach, weak and general malaise, as well as back ache.
Monday, 30 May 2011
Tuesday, 31 May 2011
Saturday 30 April 2011
ME Symptom Diary: April 2011
Bristol Dental Hospital cc-by-sa/2.0 - © Thomas Nugent - geograph.org.uk/p/2597942 |
Friday, 1 Apr 2011
Saturday, 2 Apr 2011
Sunday, 3 Apr 2011
Monday, 4 Apr 2011
Tuesday, 5 Apr 2011
Wednesday, 6 Apr 2011
Thursday, 7 Apr 2011
Friday, 8 Apr 2011
Saturday, 9 Apr 2011
Sunday, 10 Apr 2011
Monday, 11 Apr 2011
Tuesday, 12 Apr 2011
Wednesday, 13 Apr 2011
Thursday, 14 Apr 2011
Friday, 15 Apr 2011
Saturday, 16 Apr 2011
Sunday, 17 Apr 2011
Monday, 18 Apr 2011
Tuesday, 19 Apr 2011
Wednesday, 20 Apr 2011
Thursday, 21 Apr 2011
Friday, 22 Apr 2011
Saturday, 23 Apr 2011
Sunday, 24 Apr 2011
Monday, 25 Apr 2011
Tuesday, 26 Apr 2011
Wednesday, 27 Apr 2011
Thursday, 28 Apr 2011
Friday, 29 Apr 2011
Saturday, 30 Apr 2011
Monday 4 April 2011
A morning ritual
The discomfort is so severe, it causes me to catch my breath and I have to concentrate hard to hold on just long enough to get my cup of coffee. The pain in my neck and back were already severe, but as I held the cup under the spout, my arm and shoulder started to go weak and hurt. It seems like it takes an eternity. It feels like torture. These days I use cups and saucers, not because I’m posh, but because after I’ve had to stand to get the coffee, I shake too much to carry it without spilling some. My balance is off, so I walk into walls and doorways and the increasing weakness in my arms makes even the smallest items too heavy.
Now that I’m lying down again, I’m having difficulty focusing my eyes, focusing my thoughts, composing these words – but I want to get it down immediately so that I capture the true horror – and I’m shaking even more from the exertion. Not a particularly marked shake, but still a discernable tremor in my hands. More apparent, to me, is the feeling that my brain is “shaking” – I assume this is actually pulsations as my heart overworks to get blood to my brain – inside my head, making me feel all the more sick and unsteady.
Yesterday morning it was sunny and so I decided to walk round to the local shop and get a sandwich for lunch. It’s only about 400-500 yards, but I get about a quarter of the way these days and wish I hadn’t started. It feels like climbing Everest: it seems to take forever, but I push myself on reluctantly, every step jarring my neck and sending sharp stabbing pains into my hip. I always get home exhausted. Yesterday was no exception. I ate my lunch. I didn’t even have the energy to eat the treats I’d bought myself too before I had to lie down, but I was in too much pain and beyond tired to be able to sleep, so I just had to lie there and try to find a comfortable enough position.
My neck and back hurt too much to sit up or even recline at a low angle. I had to be flat enough with just one pillow to support my neck and try to lie on my side so that I can still, just, watch TV on the Laptop, albeit that it appears at a 90 degree angle from true. It doesn’t really matter what’s on. But the pain in my legs has become so severe that I can’t lie like that. The pain in my knees, which feel swollen and almost like bruised, mean I cannot rest one leg on top of the other. The pain in my foot is so bad that I can’t bear to even lay that on the bedclothes. I try another pillow, another angle, dangling it off the side … nothing works. If I find something acceptable for my foot, it pulls on my hip joint and makes that even more painful. The painkillers I’ve taken make no difference. So I spend the rest of the day in a sort of trance, just trying to stay in a position that doesn’t hurt too much. I’m still not aware of what was on TV.
At about 8.30 p.m., I get up to get a cup of tea. I feel too ill and can’t stand long enough to get food, so I don’t bother. I come back to bed, take my medication, which means I will be able to get some sleep. That was my whole day.
Saturday 2 April 2011
Laziness versus Pacing
Laziness versus Pacing |
It suddenly struck me when I saw this LOLcat image that this is how others view us. Pacing: stopping well short of what you might be able to do to avoid exhaustion and flares is extremely important to sufferers of fibromyalgia and ME/CFS. My occupational therapist at the Pain Management Centre had spoken to me about it, saying I should aim to do half or two-thirds of what I think I can manage and gradually work up towards doing more. [No I shouldn't, but ...]
All of the rest of the time, at home, I’m either too exhausted to do anything, or I’m pacing well below my capabilities in order to save up some energy for the next outing; not fun ones, mostly just hospital and doctor’s visits.
This latter is called “laying around” to anyone else. They think it’s laziness.
They should try to live a day with the amount of pain and fatigue we have: they wouldn’t be pacing, they’d be demanding the euthanasia pills!
Thursday 31 March 2011
ME Symptom Diary: March 2011
Tuesday, 1 Mar 2011
Wednesday, 2 Mar 2011
Thursday, 3 Mar 2011
Friday, 4 Mar 2011
Saturday, 5 Mar 2011
Sunday, 6 Mar 2011
Monday, 7 Mar 2011
Tuesday, 8 Mar 2011
Wednesday, 9 Mar 2011
Thursday, 10 Mar 2011
Friday, 11 Mar 2011
Saturday, 12 Mar 2011
Sunday, 13 Mar 2011
Monday, 14 Mar 2011
Tuesday, 15 Mar 2011
Wednesday, 16 Mar 2011
Thursday, 17 Mar 2011
Friday, 18 Mar 2011
Saturday, 19 Mar 2011
Sunday, 20 Mar 2011
Monday, 21 Mar 2011
Tuesday, 22 Mar 2011
Wednesday, 23 Mar 2011
Thursday, 24 Mar 2011
Friday, 25 Mar 2011
Saturday, 26 Mar 2011
Sunday, 27 Mar 2011
Monday, 28 Mar 2011
Tuesday, 29 Mar 2011
Wednesday, 30 Mar 2011
Thursday, 31 Mar 2011
Wednesday 30 March 2011
Duvet days are necessary rest not laziness
Duvet days are often necessary rest |
Monday 28 February 2011
ME Symptom Diary: February 2011
Perch style bus stop: utter torture and adds inaccessibility to disabled people. |
Tuesday, 1 Feb 2011
Wednesday, 2 Feb 2011
Thursday, 3 Feb 2011
Friday, 4 Feb 2011
Saturday, 5 Feb 2011
Sunday, 6 Feb 2011
Monday, 7 Feb 2011
Tuesday, 8 Feb 2011
Wednesday, 9 February 2011
Thursday, 10 Feb 2011
Friday, 11 Feb 2011
Saturday, 12 Feb 2011
Sunday, 13 Feb 2011
Monday, 14 Feb 2011
Tuesday, 15 Feb 2011
Wednesday, 16 Feb 2011
Thursday, 17 Feb 2011
Friday, 18 Feb 2011
Saturday, 19 Feb 2011
Sunday, 20 Feb 2011
Monday, 21 Feb 2011
Same old, same old … Woke up with feverishness again. Shaky and nauseas as soon as I move to do anything. Neck hurting more than usual. Today, I had an appointment with the Rheumatologist. Decided to try the bus to get to the hospital. Sensibly took a soft collar to help avoid more neck pain. Walk to bus stop was too far and the seat in the bus shelter was more of a ledge and entirely unsuitable and just added to my discomfort. Even turning my head to be able to cross roads on the way to the bus stop or look for the bus approaching was unbearably painful and each time caused a severe shooting pain accompanied by more nausea. The long, jolting bus ride was tortuous. However, expecting the usual “we found nothing” result, I was quite shocked by the diagnosis of cervical spondylosis (arthritis of the spine). Mind you, because of ME and my usual issues with drug reactions, this will be difficult, if not impossible to treat.
Tuesday, 22 Feb 2011
Despite having been out yesterday, I went out again today to a talk to learn about myofascial release, in hopes that this may be able to help with my issues. The rheumatologist yesterday had said that I need to try to get the fibromyalgia under control in order to reduce the pain from the arthritis (not sure how). It was a good afternoon, but involved another, long, taxing journey by bus.
Wednesday, 23 Feb 2011
The result of two outings on the previous days – despite being relatively short and in any case merely for hospital and therapeutic reasons – was THE most excruciating pain all over, which showed no signs of abating all day. As well as unbelievable neck pain from the jolting of the bus journeys, all my joints were clicking painfully, my skin feels tender and bruised everywhere and my muscles as if strained. Was unable to get up even to make food as could not moved for the severe fatigue. Had to take a nap in the afternoon.
Thursday, 24 Feb 2011
Still feel sore and bruised all over from the outings. My joints all feel like they’re assembled wrong and I am still very fatigued – I mean more than normal. Unable to concentrate on anything. Staying on bed, as usual.
Friday, 25 Feb 2011
Feel absolute crap again. Still really sore overall and woke up with especially bad neck pain that continued throughout the day, making it once more impossible to sit up without cushions to support my neck to mitigate the pain, which does not respond to painkillers.
Saturday, 26 Feb 2011
Neck pain is not improving and is only partially relieved by immobilising it with neck cushions. Any movement, even light stretching, just causes an increase in the pain. My eyes are painful again and I am still more fatigued that usual. Pushed myself to fill in application for counselling.
Sunday, 27 Feb 2011
The neck pain still just won’t let up. I’ve tried gentle movements (exercises, stretches), but that currently just makes it worse. I’ve tried immobilising it, which does help, but only while I’m reclining – it doesn’t give any lasting relief and means starting again from scratch every time I’ve had to move to go to the loo, whatever. Maybe amputation would help? I am so tired and yawning today, it’s as if I hadn’t slept. Cannot concentrate at all.
Monday, 28 Feb 2011
Sunday 27 February 2011
Signs and Symptoms of Autonomic Dysfunction
For my own purposes, I’ve
Some of the listed symptoms are always present while others occur when a person with Autonomic Dysfunction has been standing or sitting too long:
- -Dizziness
- -Light-headedness
- -Vertigo (room spinning or the sensation of spinning)
- -Feeling faint (pre-syncope)
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Fainting (syncope) - -Chest pain or pressure
- -Excessive fatigue
- -Rapid heart rate (tachycardia)
- -Stomach pain
- -Intestinal cramping
- -Nausea
- -Vomiting
- -Retching
- -Exercise Intolerance: becoming short of breath on mild exertion, having chest pain or palpitations on mild exertion. Having excessive heart rate during or immediately after exercise. Leg cramps or numbness of arms and legs during or after mild exercise.
- -Visible pooling in arms and legs: Deep purple-red colour in fingers and toes.
- -White appearance of fingers. Some present with white patches of skin on arms and legs.
- -Extremely cold hands and feet.
- -Numbness of hands and feet.
- -Muscle weakness
- -Muscle and joint pain
- -Tremors or mild shaking of hands
- -Frequent headaches or migraine headaches
- -Irritability due to decreased blood flow to the brain
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-Feeling anxious/
Having panic attacksdue to increased production of adrenaline - -Mood changes
- -Forgetfulness
- -Inability to concentrate or remember (frequently referred to as "brain fog")
- -Inability to tolerate changes in temperature
- -Decreased sweating or excessive sweating
- -Abnormal deep tendon reflexes.
- -Basic neurological exam is normal.
- -Intelligence normal when receiving adequate cerebral perfusion.
Less frequently recognized signs and symptoms:
- -Insomnia
- -Disruption of sleep/wake cycle usually consisting of increased energy late in the evening and lowest energy level in the morning regardless of amount or quality of sleep.
- -Central sleep apnea
- -Need to sleep 12-14 hours in order to complete simple activities of daily living.
- -Anoxic or convulsive seizures that are not epileptic.
- -Frequent need to urinate at night.
- -Upon standing feels head is "heavy". This resolves with lying down or with walking around.
- -Decrease in (or absence of) lubricating tears in the eye.
- -Sensitivity to bright, florescent light and bright sunlight. Many patients report feeling pre-syncopal in large grocery stores and department stores that use excessive florescent lighting. Flashing lights and multi-coloured lighting can also produce symptoms.
- -Visual distortion: Television screens and computer screens can appear distorted, especially post-syncopal or pre-syncopal episode. Flat screens are recommended.
- -Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs, reaching for an object, etc.
- -Other visual disturbances include a greying out or blacking out of the visual field; either partially or completely.
- -Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because they did not perceive anyone or anything next to them.
- -Frequent "bumping into things". Attributed to a combination of visual and depth perception deficits.
- -Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds.
- -Sensitivity to odours, even pleasant smelling chemicals such as perfume. Odours such as cleaning products, gasoline, strong foods, etc. may cause extreme nausea, retching, vomiting, dizziness and headache.
- -Decrease production of saliva or excessive production of saliva.
- -Severe constipation and decreased gut motility.
- -Weight gain regardless of diet modifications.
- -Overall slowing of metabolism is common.
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Increased metabolism (rare) - -Excessive gut motility leading to chronic diarrhoea and weight loss. (less common)
- -Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain especially right after an episode or if the patient has not had enough sleep.
- -Decrease sensitivity to pain/touch in certain areas. If standing or sitting too long causes hands and feet to turn cold and blue, patient will have decreased sensation in these areas due to poor blood flow.
- -Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode.
- -Hair loss due to decreased blood supply to hair follicles.
- -Speech disturbances: Inability to finish an expressed thought, loss of train of thought, "spoonerisms", especially if up and about for 2 hours or more without lying flat and resting.
- -Comprehension difficulties. Inability to follow a conversation. May hear words but is unable to understand their context in the sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Losses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.
- -Memory recall deficits in long and short term memory. Improves with lying down and resting.
- -Abdominal migraines. Severe stomach pain triggered by large meal or by sitting or standing too long. Usually resolves if patient lies quietly.
- -Drifting to the right or left when walking. Most commonly patients report drifting to the left. Many patients report always fainting to the left as well. Appears to be unrelated to hand-dominance, but further research is needed.
- -Tend to have mild symptoms of Ehlers-Danlos, but do not necessarily test positive for the disease. This includes hypermobile joints, double joints, and soft, velvet-like skin that has little or no texture.
- -Often has another auto-immune disorder.
- -Family History of auto-immune disorder or symptoms that resemble autonomic dysfunction.
- -Appears to have more viral illnesses than general population. Often diagnosed with Chronic Fatigue Immune Dysfunction Syndrome.