From my earliest memories I remember standing on my Daddy's feet. His steps guiding me through the two step, the polka and free form. I have memories of Christmas where Pa would dance around the kitchen with Ma in his arms. Bing crooning White Christmas on the record player, and the lyrics dripping, like silk from Pa's lips. They would hoist me up into their arms and I would sit between them in a complete circle while my nonchalant older brother declared it lame (or the 70's version). In later years it was, my younger sisters sitting in their arms, but I gained the prime position in Pa's arms at family weddings and parties. Of course, when the smoochy numbers hit the decks Ma would be the only woman in his sights. But when the hits were playing he was all mine.
As I grew older I found favour in the arms of my dear and trusting cousins. One in particular would guide me around the dance floor and declare me the most beautiful girl in the room. I never felt more safe and cherished, except in my own Pa's arms. God bless you Simon. I now fully believe he was a very kind and proud cousin. He would not allow anyone near his Uncle Steve's girl! What a guy!
Still my Pa and I had the dance floor at weddings and parties. But I was now of an age where dancing all night involved girl friends and night clubs.
Jones and I would down a bottle of cheap plonk before we went out, due to our limited cash flow. Then we would hit the town, frequenting the "alternative" clubs. Those of you who have a history in Cardiff will know Bogies, The Square Club, Subways and of course Metro's. I spent many a drunken night there. Drunk and debauched! However, my night would consist of about three drinks and dancing all night with Jones to the music that "defined" us. Later there was the Hippo club. Again, all night dancing.
I don't think I have really realised how much of my life has been taken up with dance. All of this, so far has been nothing more than a way to entertain myself. I love to dance. Some say it is a way of self expression. Personally, I think it is more a way to loose yourself.
Then I come to later years. I have danced around he kitchen, living room and bedroom with my two children. In their early ears they have known what it is to follow a rhythm. They have been in a loving pair of arms and felt the flow of music. I do not feel they have missed out.
Then there is the later years. Just a few years before fibro I found a love and a need to study historic dance. I have danced on the high streets of towns, such as Carmarthen and Monmouth. I have led children by their thousands through the Pilgrim's brawl and the Horses brawl. I have taught drama students to Volta. I felt I had found my bliss. I love the way music can shape us. It can bring peace and harmony. Similarly it can stir the emotions. Music is the work of angels and I love it.
One thing I feel fibro has robed me of is dance!
DD does not dance. He does not feel comfortable dancing and it is not his forte. I cannot dance!
We have been, this evening, to a 40's night. We have had a wonderful time with our friends and neighbours. We took the cubs and they have had fun.
I have sat and watched people twice my age dance. Stepping gracefully and jauntily to 40's tunes with loved ones in their arms. I know that if I could hold myself up and tall long enough I could have led DD in a dance. We could of moved to the rhythm and cut a dashing image in the crowd.
Alas, no chance. My back is agony! I can't even walk up a fight of stairs without wheezing. A turn around the dance floor? You have to be joking!
Will this last forever? I bloody hope not!
Friday, 25 November 2011
Thursday, 17 November 2011
Bye bye fat!
It's time I lost this excess weight. It's causing huge (excuse the pun) problems. DD is ever supportive and lovely. He says the loveliest things. It may have escaped his attention, but more likely he is not shallow enough to care, but I was around 4 stone lighter when we met. I feel like I am trying to lug around an extra person all the time. It's a weird feeling to sit or lay and actually feel heavy. I don't know if this is a normal feeling for an overweight person or if it is the fibro making it worse. All I do know is it is uncomfortable and feels revolting. I don't have a particularly bad diet. I don't eat any refined sugar. I don't indulge in an excessively fatty diet.I know most of the weight went on when I changed meds. It is stated as a common side effect. However, I am hoping that removing that particular chemical from my body will allow my metabolism to recover.
I also need to exercise more. This however, brings it's own problems. It's a vicious circle. Need to exercise more, back and limbs hurt, less exercise, more weight piles on, more pain.
I'm aiming for a cut down of fat, cut out alcohol (not had much success in that one as yet) start to excercise more. All done little by little.
If I don't see a difference in a month I think it is time to join a slimming club.
I have a new dress sitting waiting for me to fit into it. I WILL wear it for christmas!
one step forward, two steps back.
 |
| harumph! |
Unfortunately, due to excessive weight and a deteriorated sacroiliac joint my back had other ideas. Even walking up and down the stairs today has been agony. So I meandered back to the comfort of my supporting pillow mountain with a book. I awoke a couple of hours later, specs on the end of my nose and book in my lap. Ever U2 on the ipod didn't keep be awake.
I know I just have to wait it out for the anti d's to leave my system but I felt I was getting somewhere yesterday. Today I am grumpy and fed up! This could be constant pain, poor sleep, pmt, or frustration at not being able to move forward with my retraining. All in all I'm possibly not the happiest of bunnies today
So today I am grumpy, shaky, tired, spotty, hurting, dizzy, have pins and needles in my hands and feet,
and feeling sick!
God damn you fibro!
Wednesday, 16 November 2011
Roast beef and Stained glass windows.
I am well aware of the sudden departure from sanity that removing anti d's from the system can produce. I have the slight jittery feeling and a multitude of other symptoms. However, all in all it is going rather well. I've not become paranoid or psychotic. My family have not felt the need to run for the hills to find peace and solace.The weirdest and possibly most entertaining of the symptoms are the odd dreams. I can't remember them all but those that feature most heavily are seared into my brain with clarity. Many people believe that dreams can mean something on a physic level. Some think it is the subconscious sorting through the days events to keep them ordered. Well, my learned friends I challenge you to make sense of this. Mainly because I have had the same dream three or four times now.
First I shall describe the setting. I am in a soaring beautiful cathedral. There are brilliant white walls and a shining marble floor. The altar is covered in the kind of tablecloth my Nanna would have favoured. Sort of orange and white seer sucker. Sat around the table are my family. My dear DD and the children. My Ma and Pa. My brother and two sisters (although they are children). There are a variety of childhood friends sat amongst my family.
They are sitting around the altar and it is laid for a sumptuous Roast Beef dinner. They are bathed in the jewel colours of the soaring stain glass window. The colour and pattern on this window seem to be of huge importance. When examined this window depicts scenes from my life. Childhood memories are picked out along with scenes of life changing events. The main central picture seems to be myself winning a children's school sports day race and I am bathed in sunlight.
My part for this dream is the cooking of this giant wholesome roast. I am cooking it on a old 70's style stove. the fact that there are only 3 burners is causing me some distress as I have to keep swapping the pans from ring to ring to make sure they are all cooked at the same time. However, I am infinitely pleased with the beef itself that is cooking perfectly in the gas oven. There is a feeling of festivity and celebration as my nearest and dearest chat among themselves. Every now and then one of them will raise their voice to include me in the conversation in a "remember when...." style.
While all this is going on I find that I am growing more and more aware that something has been forgotten. There is a person at the door trying to get in. they are stuck outside among the graves and I am content that that is where they stay. This person is someone from my past that I no longer have any use for (ex husband). I am being told he is there and various members are offering to deal with it for me and tell him he has no invite.
I become agitated that no one will listen to me when I am telling them that he is where he should be and is not the thing I have forgotten. However, I cannot tell them what it is I have forgotten as I have forgotten it!
When I wake up I have the weird sense that I have lost something.
My own interpretation?
Nothing more than dreams are weird and it is my body chemistry dealing with shedding it's toxins.
Monday, 14 November 2011
Ditching the anti ds.
The time has come my little ones to talk of other things...
Or at least to think about taking other things. The list of side effects of sertraline is staggering. Sertraline hydrochloride is an antidepressant of the selective serotonin reuptake inhibitor (SSRI) class. This type of Antidepressant is commonly prescribed to fibromyalgia sufferers. The theory is that it will “block” the pain receptors in the brain and lower the intensity of the pain. Of course there is also the depression that goes hand in hand with many chronic syndromes that it can prove affective against. For my own part I felt I could deal with “the blues” with St John's wort and diet. So the anti ds were there to deal with the pain.
I have got to the point where I feel they do not help one iota with pain or with insomnia. It has come to the point where I feel they are pointless. I can deal with any negative feelings due to constant pain with the support and care of my family and much friendlier natural remedies. I am fully aware of any contraindications in natural remedies. With synthetic medicines the side effects terrify me. They sate in the long list of Adverse effects such things as increased suicidal feelings, cancer and heart disease. I ask you! How is that good for you?
I feel less in control of my syndrome while I am relying on medication that I no longer feel is beneficial. I need to take control and plan to do so. This is quite a big step for myself and I am not expecting it to be an easy ride. One step at a time it the way forward.
Wish me luck. I may go slightly loopy in the next few weeks.
Or at least to think about taking other things. The list of side effects of sertraline is staggering. Sertraline hydrochloride is an antidepressant of the selective serotonin reuptake inhibitor (SSRI) class. This type of Antidepressant is commonly prescribed to fibromyalgia sufferers. The theory is that it will “block” the pain receptors in the brain and lower the intensity of the pain. Of course there is also the depression that goes hand in hand with many chronic syndromes that it can prove affective against. For my own part I felt I could deal with “the blues” with St John's wort and diet. So the anti ds were there to deal with the pain.
I have got to the point where I feel they do not help one iota with pain or with insomnia. It has come to the point where I feel they are pointless. I can deal with any negative feelings due to constant pain with the support and care of my family and much friendlier natural remedies. I am fully aware of any contraindications in natural remedies. With synthetic medicines the side effects terrify me. They sate in the long list of Adverse effects such things as increased suicidal feelings, cancer and heart disease. I ask you! How is that good for you?
I feel less in control of my syndrome while I am relying on medication that I no longer feel is beneficial. I need to take control and plan to do so. This is quite a big step for myself and I am not expecting it to be an easy ride. One step at a time it the way forward.
Wish me luck. I may go slightly loopy in the next few weeks.
Friday, 11 November 2011
A walk on the wild side.
After standing near the wine counters for around ten minutes in my wonderful killer red heels I started to gaze with longing at the central table and chairs. I dragged DD's ma, J, along with me on the pretext that she would be better off sitting while the men waited on us. Let's face it though. We all of us with fibro know it was an alternative motive that sent me tableward.
we settled ourselves down with out charts and glasses and the men fold did a sterling job of looking after us. (I'm not such a feminist that I can't accept help from my DD) Unfortunately we appeared to choose the table with the crazed drunken Irish woman sitting at it. There is always one and they always find me. She proceeded to tell us at least 30 times that she would never spend over £5 on a bottle of wine and she was only there for the craic. now is it genuine human nature for her to aggravate me like sand paper being rubbed over my teeth? Or was it the "aggravate everything" syndrome showing it's ugly head? Fortunately I have been raised to put on a polite mask and be nice so I didn't tell her to push off. To be honest she was vaguely amusing.
After our civilised gentle tipples we decided to go and find something to eat. We went to the Royal Hotel in Nottingham. It had all the ambiance of a morgue when we arrived. It was so empty they had shut the restaurant and just opened up a few tables in the lounge. Unfortunately I was finding the back pain caused by walking unbearable so we stayed and ate there. Luckily the ambiance picked up after half an hour or so as more people arrived and dinner was lovely. An evening meal that threatened to be a bit flat turned out to be very nice indeed. It irritated me somewhat the DD's older parents could have quite happily moved on to a better location but my pesky pain put a dampener on out hunt of a suitable eatery.
God damn you fibro. Stop making me look like I'm an aging cripple. I'm still in my 30's for goodness sake. Give me a break!
A fab evening with DD and co though :)
Rip Van Winkle
To aid the insomnia I thought it would be a good idea to try to reset my body clock with Nytol. Not a bad decision as I'm aching less and have caught up on some sleep. Unfortunately I don't think catching up on sleep at the rate of 14-16 hrs a night is idea. Yesterday I slept until 2pm. If that wasn't bad enough I halved the dose yet still slept a similar amount today. Where is my life going? I don't want a life of dreams and snoring. I want a normal sleep pattern.
Is that too much to ask?
I have my Ma and Pa visiting tomorrow and am growing concerned I may end up face down, snoring in my lunch.
I dearly hope I'm not going to wake up one morning and find that I've slept for 20 years and missed my children growing up or DD has moved on :0
Tuesday, 8 November 2011
Things that go bump in the night
and drip, drip, drip; meow; scratch scratch scratch; claw, claw, claw.
When one has a raging bout of insomnia even the most peaceful and restful place in the world can seem like the noisiest.
I am currently having a foul dose of insomnia. My body clock is kaput and I am exhausted.
My dear DD is a nocturnal rambler. This is actually not a problem and rather amusing. I do my best to remember all his quips about expendable legs and dreams about cat food for both of out amusement.
The problem is every little noise through the rest of the night. I have a beautiful pooch who snores like a warthog no to mention scratches in the middle of the night. And three cats. Slinky is a right obstreperous madam who has taken to knocking things off if they get in her way. Even at 3am! Harry is vocal at a variety of silly times and likes to announce when he is entering a room. And then Buffy who has taken to clawing the carpet to get attention. This works as she knows we will get up to stop her causing pounds worth of damage.
Then there is the condensation and.or guttering dripping in the rain. Drip, drip, drip. There is the flash of the carbon monoxide monitor that lights the room like a solar flair. The blinding glow of the clock and the sound of my own breathing.
Let's not forgo the sleep depriving agony. When asked how I feel I only ever tell DD the truth. But for you dear reader, here goes. Imagine you have just run the London marathon. With ten pond weights on each limb. Been hit by a buss on the way around and had someone pour acid into your muscles. Then you take a hot knife and slip it between your joints and prise them apart. Add in an excruciating headache and an inability to make your back work and bingo you are half way there.
Is it any wonder I can't sleep?
Don't get me wrong. It isn't always like this. Sometimes I feel fine.
One thing I will always try to do, though is stay sunny. I'm probably going to have times when I feel like this throughout my life so what would be the point in being miserable about it? I can't change who I am! I can however, try to control it and live a full and memorable life.
In the mean time. Sleep, perchance to dream!
When one has a raging bout of insomnia even the most peaceful and restful place in the world can seem like the noisiest.
I am currently having a foul dose of insomnia. My body clock is kaput and I am exhausted.
My dear DD is a nocturnal rambler. This is actually not a problem and rather amusing. I do my best to remember all his quips about expendable legs and dreams about cat food for both of out amusement.
The problem is every little noise through the rest of the night. I have a beautiful pooch who snores like a warthog no to mention scratches in the middle of the night. And three cats. Slinky is a right obstreperous madam who has taken to knocking things off if they get in her way. Even at 3am! Harry is vocal at a variety of silly times and likes to announce when he is entering a room. And then Buffy who has taken to clawing the carpet to get attention. This works as she knows we will get up to stop her causing pounds worth of damage.
Then there is the condensation and.or guttering dripping in the rain. Drip, drip, drip. There is the flash of the carbon monoxide monitor that lights the room like a solar flair. The blinding glow of the clock and the sound of my own breathing.
Let's not forgo the sleep depriving agony. When asked how I feel I only ever tell DD the truth. But for you dear reader, here goes. Imagine you have just run the London marathon. With ten pond weights on each limb. Been hit by a buss on the way around and had someone pour acid into your muscles. Then you take a hot knife and slip it between your joints and prise them apart. Add in an excruciating headache and an inability to make your back work and bingo you are half way there.
Is it any wonder I can't sleep?
Don't get me wrong. It isn't always like this. Sometimes I feel fine.
One thing I will always try to do, though is stay sunny. I'm probably going to have times when I feel like this throughout my life so what would be the point in being miserable about it? I can't change who I am! I can however, try to control it and live a full and memorable life.
In the mean time. Sleep, perchance to dream!
Valerian in the treatment of insomnia
Valerian in the treatment of insomnia
Kingdom: Plantae
Family: Valerianaceae
Genus: Valeriana
Species: Valeriana officinalis
Valerian (Valeriana officinalis) is a hardy perennial flowering plant, with heads of sweetly scented pink or white flowers which bloom in the summer months. Valerian flower extracts were used as a perfume in the sixteenth century.
Native to Europe and parts of Asia. Other names used for this plant include garden valerian , garden heliotrope (although not related to Heliotropium) and all-heal. The garden flower red valerian is also sometimes referred to as "valerian", but is a different species from the same family and not very closely related.
Actions
Uses
Insomnia
Valerian is a useful remedy against insomnia, whether caused by anxiety or overexertion and excitement. Valerian has an effect that is calming but doesn't cause sleepiness the following day. When used as a sleeping aid, valerian appears to be most effective on users who have difficulty falling asleep, however valerian has been shown to have positive results on users who wake up during the night. Valerian often seems only to work when taken over longer periods (several weeks), though many users find that it takes effect immediately.
Effective relaxant
Valerian relaxes overly contracted muscles, and is helpful in shoulder and neck tension, asthma, colic, irritable bowel syndrome, muscle spasms and menstrual pain.
High blood pressure
Valerian is used alongside other herbs in remedies for high blood pressure caused by stress and anxiety.
Large doses may result in stomach ache, apathy, and a feeling of mental dullness or mild depression. Because of the herb's tranquillizer properties, it may cause dizziness or drowsiness, effects that should be considered before driving or operating heavy or hazardous equipment. In some individuals, valerian can cause stomach ache, anxiety, and night terrors.
Though some people like the earthy scent, many others find it unpleasant, even comparing the odour to that of unwashed feet. In rare cases, valerian may cause an allergic reaction, typically as a skin rash, hives, or difficulty breathing.
Because the compounds in valerian produce central nervous system depression, they should not be used with other depressants, such as alcohol, benzodiazepines, barbiturates, or opiates. Long-term use in a male has also been associated with benzodiazepine-like withdrawal symptoms, resulting in cardiac complications and delirium.
The very limited animal and human data do not allow a conclusion as to the safety of valerian during pregnancy. Moreover, as a natural, unregulated product, the concentration, contents, and presence of contaminants in valerian preparations cannot be easily determined. Because of this uncertainty and the potential for cytotoxicity in the foetus and hepatotoxicity in the mother, the product should be avoided during pregnancy. The risk to a foetus from short-term or inadvertent use during any part of gestation, however, is probably low, if it exists at all.
Doseage
powder/capsules
For insomnia take 1-2, 500mg at night
Kingdom: Plantae
Family: Valerianaceae
Genus: Valeriana
Species: Valeriana officinalis
Native to Europe and parts of Asia. Other names used for this plant include garden valerian , garden heliotrope (although not related to Heliotropium) and all-heal. The garden flower red valerian is also sometimes referred to as "valerian", but is a different species from the same family and not very closely related.
Valerian has been used as a medicinal herb since at least the time of ancient Greece and Rome. Know to Dioscorides in the 1st century AD. Hippocrates described its properties, and Galen later prescribed it as a remedy for insomnia. In medieval Sweden, it was sometimes placed in the wedding clothes of the groom to ward off the "envy" of the elves. Valerian can also be consumed as a kind of tea.
The plant is grown from seed in spring and the root and rhizome of 2-year-old plants are unearthed in the autumn for pharmacological use.Actions
Sedative
Relaxant
Relieves muscle spasms
Relieves anxiety
Lowers blood pressure
In ayurveda, valerian is considered to work on the nervous, digestive, and respiratory systems as a stimulant, antispasmodic, stomachic, sedative, analeptic, carminative, and nervine.Insomnia
Valerian is a useful remedy against insomnia, whether caused by anxiety or overexertion and excitement. Valerian has an effect that is calming but doesn't cause sleepiness the following day. When used as a sleeping aid, valerian appears to be most effective on users who have difficulty falling asleep, however valerian has been shown to have positive results on users who wake up during the night. Valerian often seems only to work when taken over longer periods (several weeks), though many users find that it takes effect immediately.
Stress related disorders
Valerian reduces mental over-activity and nervous excitability, helping those who find it hard to relax and “switch-off”. It is beneficial to almost any stress related condition and generally has a calming rather than sedative effect on the mind.
Anxiety
Symptoms of anxiety, including tremors, panic, palpitations and sweating can be relieved with valerian.Effective relaxant
Valerian relaxes overly contracted muscles, and is helpful in shoulder and neck tension, asthma, colic, irritable bowel syndrome, muscle spasms and menstrual pain.
High blood pressure
Valerian is used alongside other herbs in remedies for high blood pressure caused by stress and anxiety.
Contraindication
Though some people like the earthy scent, many others find it unpleasant, even comparing the odour to that of unwashed feet. In rare cases, valerian may cause an allergic reaction, typically as a skin rash, hives, or difficulty breathing.
Because the compounds in valerian produce central nervous system depression, they should not be used with other depressants, such as alcohol, benzodiazepines, barbiturates, or opiates. Long-term use in a male has also been associated with benzodiazepine-like withdrawal symptoms, resulting in cardiac complications and delirium.
The very limited animal and human data do not allow a conclusion as to the safety of valerian during pregnancy. Moreover, as a natural, unregulated product, the concentration, contents, and presence of contaminants in valerian preparations cannot be easily determined. Because of this uncertainty and the potential for cytotoxicity in the foetus and hepatotoxicity in the mother, the product should be avoided during pregnancy. The risk to a foetus from short-term or inadvertent use during any part of gestation, however, is probably low, if it exists at all.
Doseage
powder/capsules
For insomnia take 1-2, 500mg at night
or
Tincture
20 drops in water.
Decoction
take 25-100 ml 20 mins before sleep.
A letter to the normals
Not written by myself but I relate in a very large way
These are the things that I would like you to understand about me before you judge me ...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing the five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend
some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FM then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro.If something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.
Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you - people who are not sick - for many things. But most importantly, I need you to understand me.
*by Jeanne Merrifield Graves, an FM Network Facebook Member
These are the things that I would like you to understand about me before you judge me ...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing the five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend
some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FM then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro.If something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.
Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you - people who are not sick - for many things. But most importantly, I need you to understand me.
*by Jeanne Merrifield Graves, an FM Network Facebook Member
one for the nonbeliever
If you were born with healthy genes, you may know me but you don't
understand me. I was not as lucky as you. I inherited the predisposition to
chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy, a malingerer, or simply ridiculous. If you have the time to read on, I
would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all,
and it isn't even new. In 1815, a surgeon at the University of Edinburgh,
William Balfour, described fibromyalgia. Over the years, it has been known
as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do
not have a known cause, but they do have a specific set of signs and
symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder. In
1987, the American Medical Association recognized FMS as a true physical
illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch
potatoes. They can be disabling and depressing, interfering with even the
simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation.
Taking your arthritis medication will not help me. I can not work my pain
out or shake it off. It is not even a pain that stays put. Today it is in my
shoulder, but tomorrow it may be in my foot or gone. My pain is believed to
be caused by improper signals sent to the brain, possibly due to sleep
disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally. If you saw me shopping in the mall
yesterday, but I can't help you with yard work today, it isn't because I
don't want to. I am, most likely, paying the price for stressing my muscles
beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a
crowd, I am not purposely targeting you. I do not have the muscle control
for that. If you are behind me on the stairs, please be patient. These days,
I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
drapes or listen to your child scream. I really can't stand it.
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in
the house or die. I have lost count of how many of Dr. Kevorkian's patients
suffered from FMS as well as other related illnesses. Severe, unrelenting
pain can cause depression. Your sincere concern and understanding can pull
me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appestat is broken, and nobody can tell
me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My
massage is not your massage. Consider how a massage would feel if that
charley horse you had in your leg last week was all over your body.
Massaging it out was very painful, but it had to be done. My body is
knot-filled. If I can stand the pain, regular massage can help, at least
temporarily.
11. My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks or even months. In fact, the good
days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means
I may not have all of the problems mentioned above. I do have pain above and
below the waist and on both sides of my body which has lasted for a very
long time. I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain,
your local bookstore, library and the internet have many good books and
articles on fibromyalgia
*http://www.ukfibromyalgia.com/forums/
understand me. I was not as lucky as you. I inherited the predisposition to
chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy, a malingerer, or simply ridiculous. If you have the time to read on, I
would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all,
and it isn't even new. In 1815, a surgeon at the University of Edinburgh,
William Balfour, described fibromyalgia. Over the years, it has been known
as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do
not have a known cause, but they do have a specific set of signs and
symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder. In
1987, the American Medical Association recognized FMS as a true physical
illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch
potatoes. They can be disabling and depressing, interfering with even the
simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation.
Taking your arthritis medication will not help me. I can not work my pain
out or shake it off. It is not even a pain that stays put. Today it is in my
shoulder, but tomorrow it may be in my foot or gone. My pain is believed to
be caused by improper signals sent to the brain, possibly due to sleep
disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally. If you saw me shopping in the mall
yesterday, but I can't help you with yard work today, it isn't because I
don't want to. I am, most likely, paying the price for stressing my muscles
beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a
crowd, I am not purposely targeting you. I do not have the muscle control
for that. If you are behind me on the stairs, please be patient. These days,
I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
drapes or listen to your child scream. I really can't stand it.
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in
the house or die. I have lost count of how many of Dr. Kevorkian's patients
suffered from FMS as well as other related illnesses. Severe, unrelenting
pain can cause depression. Your sincere concern and understanding can pull
me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appestat is broken, and nobody can tell
me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My
massage is not your massage. Consider how a massage would feel if that
charley horse you had in your leg last week was all over your body.
Massaging it out was very painful, but it had to be done. My body is
knot-filled. If I can stand the pain, regular massage can help, at least
temporarily.
11. My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks or even months. In fact, the good
days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means
I may not have all of the problems mentioned above. I do have pain above and
below the waist and on both sides of my body which has lasted for a very
long time. I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain,
your local bookstore, library and the internet have many good books and
articles on fibromyalgia
*http://www.ukfibromyalgia.com/forums/
What is fibromyalgia?
 |
| The location of the nine paired tender points |
Fibromyalgia is a syndrome
A syndrome is a collection of signs, symptoms and medical problems. A disease is a medical condition with defined causes and clear signs and symptoms.
The word fibromyalgia comes from the Greek myos meaning "muscle", Greek algos meaning "pain", and New Latin fibro meaning "fibrous tissue". fibromyalgia is often describerd as "A common syndrome of chronic widespread soft-tissue pain accompanied by weakness, fatigue, and sleep disturbances; the cause is unknown." Fibromyalgia is a common and chronic disorder. When a health illness or condition is chronic it means it is long-lasting.
Even though fibromyalgia is frequently referred to as an arthritis-related condition, it does not cause joint damage or inflammation, as arthritis does. Neither does fibromyalgia cause damage to muscle and other tissues. However, it is similar to arthritis because it causes severe pain and tiredness, and can undermine the patient's ability to go about his daily activities. Fibromyalgia is seen as a rheumatic condition. A rheumatic condition is one that causes joint and soft tissue pain.
Even though fibromyalgia is frequently referred to as an arthritis-related condition, it does not cause joint damage or inflammation, as arthritis does. Neither does fibromyalgia cause damage to muscle and other tissues. However, it is similar to arthritis because it causes severe pain and tiredness, and can undermine the patient's ability to go about his daily activities. Fibromyalgia is seen as a rheumatic condition. A rheumatic condition is one that causes joint and soft tissue pain.
There is more and more compelling evidence that fibromyalgia is in fact a neurological disorder. Caused by miss aligned pain signals being sent through the nervous system give false pain and discomfort. There is also evidence that fibromyalgia is closely connected to the Epstein-Barr virus.
What are the signs and symptoms of fibromyalgia?
- Morning stiffness
- Headaches
- Irregular sleep patterns
- IBS (irritable bowel syndrome)
- Painful menstrual periods (Dysmenorrhea)
- Hands and feet tingle and can feel numb
- Restless leg syndrome
- Sensitivity to cold or heat
- Fibro fog (memory problems, cognitive problems)
The following signs and symptoms are also possible
- Widespread pain
- Problems with vision
- Nausea
- Pelvic and urinary problems
- Weight gain
- Dizziness
- Cold/flu like symptoms
- Jaw pain and stiffness
- Skin problems
- Chest symptoms
- Depression
- Anxiety
- Myofascial pain syndrome (pain/tiredness in muscles and adjacent fibrous tissues)
- Breathing problems
Olive leaf extract
Kingdom: Plantae
Family: Oleaceae
Genus: Olea
Species: O. europaea
We are all familiar with olive oil and it's health benefits, but during my recent studied I have stumbled across olive leaf as a phytomedicine. It's properties and uses seem to make it an idea medicine for Fibromyalgia.
Olives are native to Asia Minor and Syria, but are cultivated in Mediterranean countries and also Chile, Peru and South Australia. Olive leaf was first used medicinally in Ancient Egypt and was a symbol of heavenly power. It was also used to mummify Pharaohs. More recent knowledge of the olive leaf's medicinal properties dates back to the early 1800s when pulverised leaves were used in a drink to lower fevers. A few decades later, green olive leaves were used in tea as a treatment for malaria.
Modern health professionals first started using Olive Leaf extract in 1995 when it first became available and although a long-term perspective is not yet possible, initial results are very positive. It is emerging as a very promising and unique herb with multiple applications. It shows considerable therapeutic action against many common conditions. Olive leaf extract is gaining recognition as a powerful defender against sickness, and numerous scientific studies have been conducted to investigate the extract's beneficial properties. The reported benefits of olive leaf extract's range from promoting increased energy and healthy blood pressure, to supporting the cardiovascular system, and the immune system.
Description
Evergreen tree growing to 30ft. Has deeply grooved grey trunk. Small leathery, lancedate leaves with an entire margin. Small greenish to white clusters of flowers. Green fruit ripening to black.
Active constituents
The primary medical constituents contained in unprocessed olive leaf is believed to be the antioxidants oleuropein and hydroxytyrosol, as well as several other polyphenols and flavonoids, including oleocanthal.
Uses
influenza, the common cold, candida infections, meningitis, Epstein-Barr virus (EBV), encephalitis, herpes I and II, human herpes virus 6 and 7, shingles (Herpes zoster), HIV/ARC/AIDS, chronic fatigue, hepatitis B, pneumonia, tuberculosis, gonorrhoea, malaria, dengue, severe diarrhoea, and dental, ear, urinary tract and surgical infections, improved psoriasis, normalisation of heart beat irregularities, diminished cravings, less pain from haemorrhoids, toothaches and chronically achy joints.None known
Method of administration
Olive leaf can be taken as a liquid concentrate, dried leaf tea, powder, or capsule. The leaf extracts can be taken in powder, liquid concentrate, or capsule form though the fresh-picked leaf liquid extracts are quickly gaining popularity due to the broader range of healing compounds they contain.
*With thanks to http://www.herbwisdom.com/herb-olive-leaf.html.
Sunday, 6 November 2011
phytomedication
here is a list of what is being taken at the moment.
Magnesium 750 mg a day
vit B complex 3 tabs a day
glucosamine sulphate 2000mg a day
omega 3 3000mg a day
occasionally siberian ginseng.
soon to be taking olive leaf.
Magnesium 750 mg a day
vit B complex 3 tabs a day
glucosamine sulphate 2000mg a day
omega 3 3000mg a day
occasionally siberian ginseng.
soon to be taking olive leaf.
A dynamic change.
Ok, so here I go.
I've decided to keep this blog because I want to see the difference and keep a not of the changes I make. I want to be able to look back to find inspiration and to see how I have made mistakes. I want a document of my journey with fibromyalgia.
I am currently at the worst (health wise) that I have ever been.
My home life is wonderful, my relationships with those I care about are giving and nurturing. I do have stressful aspects to my life. There are one or two loose ends that need to be tied up. I hope tying them will make a difference.
However, I feel a frank and honest account of my health and lifestyle can only be a good thing. In addition by having it on-line I hope others will find it helpful.
I am only 37 and feel about 80. I have a long life ahead of me (I hope and want to live it to the fullest. I want to have a life of creating wonderful memories and collecting cherished smiles. Both from myself and those around me.
My beautiful children deserve a childhood filled with joy and laughter, not a mother who is permanently in bed or in pain.
My darling A (the sparkle in my life) is a wonderful and giving human being. I will always do my best to keep our relationship happy and fulfilling. I will never take for granted how good he is at dealing with my illness and being understanding and caring. Due to all these qualities he deserves a partner he can share life and adventures with. We love the outdoors and he deserves to be able to enjoy them to the full extent rather than a touch towards it and tiny wary steps.
I plan to make some changes. Some of them big and some of them tiny. I plan to take them one step at a time.
I was once told by a very good friend the one teaspoon at a time a person can move a mountain. It's time to raid the cutlery draw and get on with it.
Wish me luck!
I've decided to keep this blog because I want to see the difference and keep a not of the changes I make. I want to be able to look back to find inspiration and to see how I have made mistakes. I want a document of my journey with fibromyalgia.
I am currently at the worst (health wise) that I have ever been.
My home life is wonderful, my relationships with those I care about are giving and nurturing. I do have stressful aspects to my life. There are one or two loose ends that need to be tied up. I hope tying them will make a difference.
However, I feel a frank and honest account of my health and lifestyle can only be a good thing. In addition by having it on-line I hope others will find it helpful.
I am only 37 and feel about 80. I have a long life ahead of me (I hope and want to live it to the fullest. I want to have a life of creating wonderful memories and collecting cherished smiles. Both from myself and those around me.
My beautiful children deserve a childhood filled with joy and laughter, not a mother who is permanently in bed or in pain.
My darling A (the sparkle in my life) is a wonderful and giving human being. I will always do my best to keep our relationship happy and fulfilling. I will never take for granted how good he is at dealing with my illness and being understanding and caring. Due to all these qualities he deserves a partner he can share life and adventures with. We love the outdoors and he deserves to be able to enjoy them to the full extent rather than a touch towards it and tiny wary steps.
I plan to make some changes. Some of them big and some of them tiny. I plan to take them one step at a time.
I was once told by a very good friend the one teaspoon at a time a person can move a mountain. It's time to raid the cutlery draw and get on with it.
Wish me luck!
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